A multi-context, multi-method assessment of the contribution of nurses to chronic disease management.

Transcription

1 A multi-context, multi-method assessment of the contribution of nurses to chronic disease management. Report for the National Institute for Health Research Service Delivery and Organisation programme June 2010 Prepared by Professor Alison While Dr Angus Forbes Dr Freda Mold Ms Billie Coomber King s College London Florence Nightingale School of Nursing and Midwifery Address for correspondence Professor Alison While King s College London Florence Nightingale School of Nursing and Midwifery 57 Waterloo Road, London, SE1 8WA alison.while@kcl.ac.uk Queen's Printer and Controller of HMSO

2 Contents Acknowledgements...5 Abstract Introduction, Aims and Objectives Background Chronic disease management Chronic disease management and nurses The tracer disorders (Diabetes, MS & COPD) Nursing roles and levels Study aim and objectives Summary Methods Initial conceptualisation Stage 1- Theory development Literature review National participative events National postal survey Stage 2- Case-studies Setting and participants Data collection Data analysis Synthesis Ethics Findings Data sources Literature items National participative events National postal survey Nurse participants case study interviews Patient participants patient survey Carer participants Assessment Literature review findings- assessment National participative events - assessment National Postal survey Nurse interviews & questionnaires - assessment Patient perspectives assessment themes...57 Queen's Printer and Controller of HMSO

3 3.3 Health Promotion Literature review findings - health promotion National participative events - health promotion Nurse interviews & questionnaires - health promotion Patient perspectives - health promotion themes Clinical care Literature review findings - clinical care National participative events - clinical care Nurse interviews & questionnaires - clinical care National participative events clinical care Patient perspectives - clinical care Care organisation Literature review findings - care organisation National participative events - care organisation National participative events - changes to nursing roles National postal survey - care organisation Nurse interviews & questionnaires - care organisation Patient perspectives - care organisation themes Service Development Service development - literature review Service development - nurse interviews Impact of the nursing contribution to care Literature review findings - impact of contribution National participative events impact Nurse interviews & questionnaires - impact Patient perspectives - impact of contribution Discussion Assessment synthesis Patient views and experience of assessment Recommendations Health promotion synthesis Patient views and experiences of health promotion Recommendations Clinical care synthesis Patient views and experience of clinical care Recommendations Care organisation synthesis Patient views and experience of care organisation Recommendations The impact of the nursing contribution Nursing roles Recommendations Limitations of the study Conclusion and Recommendations Queen's Printer and Controller of HMSO

4 5.1 Recommendations for policy Recommendations for the workforce and education Recommendations for future research References Queen's Printer and Controller of HMSO

5 Acknowledgements This research project benefitted from the generous support of nurses who contributed in various ways to the data set for which the research team are most grateful. We are also most grateful to the key contacts at the general practices and community specialist teams for all their help throughout the patient element of this project. We wish to thank them for enabling access to their patient groups, without which we would have been unable to explore and acknowledge patients experiences. We would also like to thank the users and patients who gave of their time through participating in the national participative events and completing questionnaires. These data were crucial to understanding the patient perspective of the nurse s contribution. Finally, we would like to thank the members of the project Advisory Group for their valuable contributions throughout the research project. The members included: Professor Patrick White King s College London Professor Martin Gulliford King s College London Mr Bill Dakin Breathe Easy Representative Dr Eileen Turner Diabetes Centre King s College Hospital Ms Nicola Russell MS Trust Ms Caron Furnival The MS Society Ms Samantha Prigmore The British Thoracic Society Ms Jacqui Fenton Respiratory Ward King s College Hospital Ms Catherine Kelly British Lung Foundation Queen's Printer and Controller of HMSO

6 Abstract SDO Project (08/1605/119) Background: Nurses are the largest component of the qualified workforce. Understanding of the contribution of nurses to chronic disease management (CDM) in light of the growing health burden of long term conditions is important if limited resources are to be directed effectively and efficiently. The study aimed to define the nature of the nursing contribution to chronic disease management and to provide some assessment of the impact or effect of that contribution. Method: A multi-method study was conducted comprising a literature review; four national participative events; a national postal survey of nursing service leads across 100 acute hospitals and 100 primary health care organisations and 35 teaching hospitals; interviews with 61 nurses across the range of nurse roles and clinical grades in nine case study sites from within the Thames region and a large postal survey of patients registered on local service databases focusing upon three disorders: diabetes, COPD and MS as exemplars of long term conditions. Results: There was variability in the quantity and quality of care across the selected disorders care systems studied. Nurses were found to contribute to care assessment, clinical care and have multiple functions within the organisation of chronic disease management. Nurses contribute to assessment throughout the disease trajectory which patients value. However, the nursing contribution to health promotion was not strongly identified in terms of primary prevention and was focused upon patient education delivered through both individual and group strategies to promote self-care support behaviours and healthy life-styles for those with an identified health problem. The nursing contribution to clinical care identified fell into four areas: continuing management; clinical interventions; psychosocial interventions; patient involvement; and patient safety. Nurses were often the central point of reference for the patient in shaping their day-to-day care. The contribution of nurses to the care organisation increased health care access; improved continuity of care; maintained care system regulation; and improved cross-boundary working. Conclusion: The study identified new insights into how nursing roles are evolving in CDM. The study also provided insights regarding the contribution of nurses across the domains of the initial conceptual model (assessment, health promotion, clinical interventions and care organisation). However, further enquiry is needed regarding the different models of CDM and the impact of the nursing contribution on CDM. Queen's Printer and Controller of HMSO

7 The Report 1 Introduction, Aims and Objectives Nurses are the largest component of the health care workforce. Nurses play a central role in chronic disease management (CDM) and as such they are key to the success of most CDM systems. Therefore, understanding the contribution of nurses to the development and delivery of CDM and their impact on care processes and outcomes is important. This report sets out the findings of a study examining the contribution of nurses to the care of patients with diabetes mellitus, multiple sclerosis (MS), and chronic obstructive pulmonary disease (COPD). Multiple data sources were used to provide an insight into the nature of the nursing contribution (conceptualisation) and its impact on CDM. 1.1 Background Long-term conditions have been defined as: illnesses that are prolonged, do not resolve spontaneously, and are rarely cured completely (US Centre for Disease Control and Prevention, 2004). The prevalence of long-term conditions is rising significantly with increasing obesity levels, smoking and the growing number of older people being the principle drivers. The WHO (2006) forecasts that by % of all deaths in Europe would be the consequence of a long-term condition. In the UK it has been estimated that 17.5 million people (or 6 in 10 adults) are living with a long-term condition and in over half of these cases the patient s life is severely disrupted (DoH, 2005a). Long-term conditions are very costly to manage. It is estimated that diabetes alone accounts for 5% of all health care expenditure and only 10% of patients account for over half of the total NHS bed occupancy (DoH 2005b). Therefore, the need to develop cost-effective systems for CDM has become an imperative for health care providers, managers and politicians. This sense of urgency is further heightened by demographic changes in the workforce with a large number of current health professionals approaching the age of retirement. While there are currently two workers for each retired person, in the near future there will soon be one worker for each two retired people in the UK (United Nations, 2000) Chronic disease management CDM has traditionally been organised in horizontal systems with patients being transferred between primary care and specialist hospital services. However, the level of service integration has often been weak as a result of the focus on the needs of the organisations rather the patient. This poor integration, Queen's Printer and Controller of HMSO

8 together with a failure to involve patients in their care, has created what has been described as a quality chasm in CDM (Institute of Medicine, 2001). Modern approaches to CDM seek to bridge this chasm by focussing on three core elements namely: Patient involvement Successful outcomes in CDM are dependent on patients performing a range of complex self-care behaviours (taking medication correctly, monitoring fluctuations in their health and maintaining a healthy lifestyle). The emphasis on self-care places the patient, rather than the health professional, at the centre of the care system. This patient focus has led to the adoption of new consultation strategies based on a partnership between the patient and the professional, the so-called empowerment model (Funnell & Anderson, 2004). This model emphasises patient choice, shared decision making and the psychosocial aspects of care delivery. Vertical integration Vertical integration recognises that patients with differing levels of disease severity or disease progression will need different approaches to their care. Secondary prevention of health problems and the identification of more complex patients should minimise inappropriate health care. One of the most widely adopted vertically integrated models is that of the US health provider Kaiser Permanente (Ham et al, 2004). The model proposes three vertically integrated levels: Level 1, Self-care Support (70-80% of patients) which focuses on screening, education and patient empowerment; Level 2, Assisted Care (15% of patients) which focuses on high risk patients needing active clinical management; and Level 3, Intensive Management (5% of patients) which focuses on patients with complex needs, often accompanied by multiple-pathology. Health promotion is important at each level. Primary prevention and case-finding are also important elements in vertically integrated systems. Care system integration Care system integration aspires to make better use of the resources through horizontal integration of care providers and systems as in Wagner s Chronic Care Model (Bodenheimer et al, 2002). The importance of community resources and policies (the local network of resources available to practitioners in implementing care measures), health care organisation (factors such as service access and integration), self-management support (the systems used to support patients in acquiring and maintaining self-care skills), delivery system design (including development of care providers so that they have the knowledge and skills necessary to provide appropriate care and to design and maintain the care management system); decision support (e.g. the development and implementation of evidence-based guidelines), and clinical information systems (e.g. electronic records with built-in prompting systems) are acknowledged. Both the Kaiser and Wagner models have been adapted Queen's Printer and Controller of HMSO

9 and incorporated into the NHS and Social Care Long Term Conditions Model (DoH, 2005a). Therefore, modern CDM is complex demanding an integration of services and expertise, explicit care systems and high levels of patient involvement Chronic disease management and nurses Defining the contribution of nurses to chronic disease is challenging because nursing activities in CDM are very broad, poorly defined and multifaceted. The nursing contribution can be viewed both horizontally (managing patients through and between care systems) and vertically (providing preventative health care; providing self-care support and education; identifying problems and complications; managing problems and optimising therapies; and providing case-management in more complex cases with multiple needs). Nursing activities are also often associated with attempts to increase patient participation through: the adoption of a more holistic approach; services targeted at marginalised or excluded groups; and the introduction of nurse-led patient education or psychological interventions. However, while nursing activities are incorporated into a range of different CDM systems, the way in which the activities work and what they contribute specifically is not well articulated either theoretically or empirically. There is much emphasis on a holistic perspective but its constituents and impact upon the patient are not well demonstrated. Furthermore, the nursing contribution cannot be isolated from that of the wider multidisciplinary team because CDM often involves the crossing of strong organisational and professional boundaries in complex patient journeys. Therefore, it is difficult to distinguish between: the independent contribution of nurses to patient care; the shared contribution within the multidisciplinary team; and the independent contribution of other team members. In addition, as the qualified nurse workforce has become more specialised, and sometimes fragmented, there is the added dimension of intra-professional working with different groups of nurses contributing to patients during the disease process. Further variation is evident between different countries. While there has been a common trend in developed countries towards more advanced practice roles for nurses, different terms and labels are used to describe the roles with little evidence of the principles upon which these roles are based. Current developments in CDM raise some important questions about the nature of nursing in the 21st century. Nursing has evolved from a discipline concerned with managing the care system (the Nightingale legacy) in the form of the hospital ward environment, through a period where nurses were viewed largely as the doctor s handmaiden (Sweet and Norman, 1995) prior to the current diversification of nursing roles. However, this was not a linear evolution as these different constructions of nursing still have currency within CDM both at the level of the individual patient and the care system. The contribution of nurses to CDM can be expressed as: Queen's Printer and Controller of HMSO

10 nurse delivered care (the nurse provides care under the direction of others, a more advanced nurse or a doctor; dependent nursing practice). nurse-led care (the nurse identifies the needs and then organises a care package or refers to others; independent nursing practice); nurse-led and nurse delivered care (the nurse identifies the needs and manages the problem herself; independent nursing practice); However, the challenge is to identify the distinctive elements (core principles and key activities/ interventions) that form the nursing contribution to CDM. In addition to this lack of conceptual clarity, there is the more fundamental question of how effective nurses are in providing CDM. Do nurses provide equivalent care to that of physicians? Is nursing care cheaper and more effective? What is the added value of nursing for the patient? These questions relate to the impact of nurses upon the care of patients with a long-term condition. To answer these questions it is necessary to consider more than the reported effects of nurses on patient care or their equivalence to other workers and to consider the specific types of nursing practices used in assessing needs, promoting health, meeting clinical needs and in contributing to the organisation of care. It requires a teasing out of the mechanisms of nursing agency within the care systems The tracer disorders (Diabetes, MS & COPD) Three tracer disorders were chosen to provide a focus for the study in addressing the complex nature of the nursing contribution to CDM in different clinical settings. The three disorders were: diabetes; multiple sclerosis (MS); and chronic obstructive pulmonary disease (COPD). They fulfil Kessner and Kalk's (1973) criteria for selecting tracer conditions which are: they are easy to define; they are amenable to improvement (there are clear care objectives for each disorder); there are criteria for distinguishing between good and bad care (each disorders has nationally identified protocols to determine the quality of both care processes and outcomes); and non-medical factors can be identified (each disorder is associated with a range of psychosocial effects). While there is a degree of commonality and some interaction between these disorders, there are also contrasts between them in relation to: the needs of the user populations; the way in which CDM has developed (e.g. high and low levels of clinical infrastructure); clinical contexts (e.g. primary, secondary and tertiary care); the roles undertaken by nurses (e.g. different grades and levels of specialisation, including doctor substitution models and 'community matron' roles); and the levels of cross-boundary working. The similarities and differences between the disorders are illustrated when mapped against the Kaiser model of CDM, their respective patient journeys and in terms of the place of care. These similarities and differences are useful in expressing different facets of the nursing contribution. The different features of each disorder in relation to the four main levels of the Kaiser CDM model are set out in Table Queen's Printer and Controller of HMSO

11 Table CDM levels by disorder Disorder CDM levels Primary prevention Level 1 Self management Level 2 Care management Level 3 Case management Diabetes Health promoting interventions to reduce obesity Interventions to support diet and lifestyle change, home blood glucose monitoring and therapy adherence Targeting patients with poor metabolic control and/or complications for more intensive care management to prevent further end-organ damage Patients with more advanced disease (e.g. endstage renal failure), comorbidity (e.g. heart failure) or additional frailtyold age MS Primary prevention of MS is not possible Self-care interventions to help patients minimise the effects of symptoms (fatigue) Managing increasing disability and more complex symptoms with a rehabilitation focus Management of those with advanced disease patients may require intensive nursing and social care support COPD Health promoting interventions for smoking cessation Smoking cessation; selfmanagement plans/strategies self-care exacerbations: diet and lifestyle change; and treatment adherence rapid response to exacerbations avoiding unnecessary hospital admissions, minimising lung damage and identifying underlying problems High functional dependence, some of whom will be technology dependent (oxygen and ventilation) & palliative care in end-stage disease The patient journeys for the disorders have common phases with variations in relation to the speed and course of the disorders. Table sets out those common phases together with the main underlying focus in each phase. In terms of pre-diagnosis there is a concern with preventing the disease (not possible in MS) and finding patients with the disease (early recognition and/or screening). The diagnostic phase is clearly a profound transition point bringing with it a mixture of feelings for the patient, ranging from relief to despair at knowing what is wrong with them. In all the diseases there is some complexity to the diagnostic process, although in MS the diagnostic phase is often the most protracted. Queen's Printer and Controller of HMSO

12 Table Patient journeys by disorder Disorder Prediagnosis Diagnostic phase Early disease Disability & complications End-stage disease Diabetes Prevention (obesity) & screening Psychological adjustment & initiation treatment Continuous management/ complication screening Complication management Sudden mortality, comorbidities & frailty MS Early disease recognition Psychological adjustment confirmation of diagnosis Minimal disability & disease modification Advancing disability health and social care needs Total care needs technology dependent COPD Prevention (smoking) & screening Psychological adjustment & preventative treatment Continuous management prevention of crises Increasing disability and technology dependence Total technology dependence Events Crises Disease Life New New (physical/psychological) changes/progression changes complications services/ professionals A key consideration in the patient journey is not just the sequences of advances in disease progression but also the patient s experience of different events along that journey These events are potentially destabilising episodes in the journey with patients experiencing acute relapses and emergencies and/or changes in their ability to cope with their disease. This instability raises issues to do with both crisis prevention and management (anticipatory care). Events also include changes in care (both formal and informal) and in the range of services involved in the patient s care with the introduction of new care arrangements raising issues relating to continuity. While advances in disease are associated with increased dependence and disability, in diabetes they are also associated with the increased risk of sudden death. There are variations in place of care both between and within the disorders (Table 1.1.3). Most diabetes care is managed in primary care while most MS care is managed between specialist neurological or neuro-rehabilitation services. In COPD primary care plays a central role in the early stages of the disease with specialist services in the form of either hospital outreach or community based services managing more complex cases. While in diabetes and COPD there is a trend toward more primary care based management, the prevalence of MS is so low that it is not well suited to management in primary care. Variations in the type and stage of the disease often influence the place of care. Thus Type 1 diabetes care is mainly managed by specialist hospital diabetes centres while Type 2 diabetes care is mainly managed in primary Queen's Printer and Controller of HMSO

13 care. In the early stages of MS disease management is centred in specialist neurological services focussing on disease modification and relapse management, with the transition into rehabilitative services occurring when disabilities and functional deficits become the primary focus of health care. In COPD there has been an increasing focus on home care services. This focus has in part been driven by costs as patients with COPD occupy a disproportionate number of hospital beds. The NICE guidelines for COPD (NICE 2004) provide some criteria for selecting hospital or home based care considering factors such as: level of breathlessness; the patient s general condition; level of activity; presence of cyanosis; worsening peripheral oedema; level of consciousness; social circumstances; acute confusion; rapid rate of onset; significant co-morbidity; and oxygen depletion level. Rehabilitative services also play a role in COPD with both physiotherapists and occupational therapists providing important contributions to the management of functional adaptation. Continuing care arrangements are relevant to all the disorders but are particularly important in MS and COPD as the patient s level of care needs are often extensive requiring total nursing care. Given that advanced age is a major risk factor for diabetes, there are many older frail people in continuing care settings who have diabetes. Palliative care is also an important element of care in all three disorders, although only MS and COPD have specific Queen's Printer and Controller of HMSO

14 palliative care services. Finally, it is important to remember that across the UK there are large variations in the way in which services are structured Nursing roles and levels Nursing roles are well established in all three conditions and are generally located in three main nurse groups: specialist disease nurses; primary care nurses, and general nurses. Specialist disease nurses Each condition has an associated specialist nursing workforce. The specialist nursing roles evolved to address the complex self-care needs of patients and the wide range of different physical and emotional problems which they encounter. The specialist nursing roles have been established longest in diabetes because patients with diabetes have required a high level of ongoing professional guidance in managing their condition (lifestyle and insulin) for longer (insulin became routinely available after World War II). The MS specialist nurse role was first established in North America in the 1970s. In the UK in 1999 there were only 40 MS specialist nurses employed in the NHS, however, funding from charities and the pharmaceutical industry (to support disease modifying therapies) has seen this figure rise to just under 200. COPD specialists emerged in the 1980s and, as in MS, their numbers have also steadily increased again with some charitable support. Each disorder has its own specialist nurse association: UK Association of Diabetes Specialist Nurse; the United Kingdom MS Specialist Nurse Association; and the Association of Respiratory Nurse Specialists. Initially specialist nurses were traditionally employed in specialist hospital settings, however, their roles have now diversified and can be found in primary care, rehabilitation and palliative care settings. The focus of their roles has also shifted with cross-boundary working, particularly supporting primary and continuing care settings, being increasingly central. Primary care nurses Following the shift of CDM from hospital to primary care, the role of practice nurses has expanded rapidly. This role is well advanced regarding diabetes and practice nurses are taking an increasingly active role in COPD. However, practice nurses have not developed a role with MS because of its low prevalence. District nurses (and now community matrons) play a role with all the disorders, particularly with those with more advanced disease and palliative care needs. Additionally palliative care nurses are often involved in end-stage management. District nurses have additional roles in diabetes care by extending care to the housebound and in wound care management. Queen's Printer and Controller of HMSO

15 General nurses Patients with all three disorders may require general nursing care at some point either due to acute episodes or in advanced disease states. Patients with MS and COPD may experience relapses when the patient requires total nursing care. Patients may also experience general nursing care either at home, in nursing homes and hospices. Nursing levels In addition to the diversity of context, there is also diversity in the level of the nursing role. While there is clearly a distinction between the general registered nurse and the disease specialist nurse, the distinction between specialist and primary care nurses is less defined as both are senior nursing roles. Indeed, the use of the term specialist has become confused with its use in relation to a number of other groups of practitioners working mainly in primary care, such as district nurses and health visitors (UKCC, 1998). The UKCC (1998) specified 3 levels of nursing practice: professional practice (which includes all qualified nurses); specialist practice (nurses working in a speciality area of practice for which they have undertaken additional training); and advanced practice. The term advancing practice was coined by Wilson-Barnett et al (2001) to describe practitioners who are leading care provision. Currently this term would include nurse consultants, but it may also apply to other specialist and primary care based nurses who have pioneered a particular service or intervention. The level of practice in terms of the responsibilities placed on nurses is continually shifting. Nurses are providing an increasing amount of doctor substitution work, a trend that is set to continue with the expansion of nonmedical prescribing. Nurses are also expanding the range of therapies which they provide, specialising in areas such as self-care support and symptom alleviation. Further distinctions in role levels have come from two sets of nursing competency documents developed for MS and diabetes. The UK MS Specialist Nurse Association (UKMSNA) (2001; 2003) has published guidance on both developing the specialist nurse role and a competency framework defining practice at the novice, competent and expert levels. The UK Association of Diabetes Specialist Nurse and the RCN (2005) have published a similar document for diabetes nurses. The document detailed a range of role competencies at five levels: the unregistered practitioner (e.g. health care assistant); competent nurse; experienced/proficient nurse; senior practitioner/expert nurse; and nurse consultant. Example 1 provides an outline of competencies related to the different levels. The introduction of clinical banding introduces fine grain distinctions between what nurses working at different band points contribute to care. Queen's Printer and Controller of HMSO

16 Example 1. Self-management competencies diabetes 1. Unregistered practitioner support the person to develop self-management skills supervised by a registered nurse observe and report any concerns that might affect the ability of the person to selfcare. 2. Competent nurse As 1, and: assess ability to self-care and work with the person with diabetes and significant others to optimise self-care skills direct people to information and support to encourage informed decision-making about living with diabetes in a range of areas including: driving; employment; eating out and drinking alcohol; smoking; and changes in circumstances. 3. Experienced proficient nurse As 2, and: assess the person with diabetes and significant others and provide tailored education to optimise self-care skills and promote informed decision-making about lifestyle choices provide information and support to encourage the person with diabetes to make informed choices about controlling and monitoring their own diabetes including: choice of treatment and follow-up; risk reduction; monitoring control; and complications organise psycho-social care to support self-management of diabetes. 4. Senior practitioner/ expert nurse As 3, and: demonstrate knowledge of theoretical frameworks and educational philosophies underpinning behaviour change demonstrate knowledge and understanding of biophysical and psycho-social factors affecting self-management demonstrate knowledge and skills to facilitate behaviour modification develop and ensure delivery of educational material, supportive networks and models of diabetes care that foster empowerment and life-long learning about work with the person with diabetes to facilitate lifestyle adjustment in response to changes in diabetes and/or circumstances. 5. Consultant nurse As 4, and: identify service shortfalls and develop strategic plan for the service work in collaboration with higher educational institutes and other education providers to meet educational needs initiate and lead research and promote evidence-based practice develop best practice e.g. through leadership and consultancy. An Integrated Career and Competency Framework for Diabetes Nursing. (2005) A collaborative project led by the Diabetes Nursing Strategy Group. London: UK Association of Diabetes Specialist Nurses and Royal College of Nursing. Queen's Printer and Controller of HMSO

17 1.2 Study aim and objectives Aims: To define the nature of the nursing contribution (conceptualisation) to CDM and to provide some assessment of the impact or effect of that contribution on clinical care in different CDM systems and patient populations. Objectives: 1. To identify the nature of the nursing roles in CDM. 2. To identify current role developments in CDM. 3. To identify the contribution of nurses to assessment, health promotion, clinical care and care organisation within CDM. 4. To identify factors that enable or inhibit the contribution of nurses. 5. To identify commonalities and differences between the disorders. 6. To provide a preliminary evaluation of the impact of the nursing contribution within different CDM systems in terms of the patient and carer experience of care. 7. To provide guidance for the future development of the nursing contribution to CDM. 1.3 Summary The need to manage an ever increasing number of people with long-term condition, in the face of rising health care costs and a diminishing workforce requires a new approach to health care delivery. To meet this challenge the CDM systems are becoming more sophisticated using a range of health technologies and models of care. Nurses are the largest professional component of the workforce involved in CDM systems. Therefore, the success of any strategy in tackling CDM must consider how best to deploy this resource. This study considers the contribution of nurses to CDM by exploring that contribution in three tracer disorders: diabetes, MS and COPD. Each of these disorders highlights both common and distinctive components of the contribution that are generalisable to other settings. Queen's Printer and Controller of HMSO

18 2 Methods The study involved a multi-method approach divided into two stages. Stage 1 (theory development) focussed on conceptualising the nursing contribution and stage 2 (case studies) explored the conceptual models in different CDM systems. The methods for each stage are described within this chapter as follows: Initial conceptualisation for the study Stage 1- Theory development Literature review National participative events and postal survey Stage 2- Case studies Case study selection Synthesis Nurse interviews Patient and carer survey 2.1 Initial conceptualisation An initial conceptual framework mapping out the key dimensions of the contribution of nurses to CDM was used to guide the study (see Figure 2.1). This is a modified version of framework developed in a previous project (Forbes et al, 2007). The framework identifies a number of domains: variations in the nursing role; the contribution of nurses to care delivery (assessment, health promotion and clinical interventions); the contribution of nurses to the health care organisation; the impact of enabling and inhibiting factors; and the relationship between patient/carer and service related outcomes. The framework was used to guide data collection, organisation, analysis and synthesis. The framework was applied flexibly in the analysis and synthesis to ensure that additional insights were not overlooked. Queen's Printer and Controller of HMSO

19 Forbes et al Stage 1- Theory development In this stage of the study the focus was on identifying the underlying elements within the nursing contribution to CDM. The intention was to identify the detail of the nursing contribution in the context of national trends and perspectives. The output from Stage 1 was used to guide the Stage 2 inquiry Literature review Identification and retrieval of items Given the topic complexity and board focus of the review, a blend of protocol based searching, snowballing and personal knowledge were used to identify the material for the review (Greenhalgh and Peacock, 2005): Protocol searches were undertaken independently in each disorder. The searches were conducted on the following databases: Cochrane Library including the Cochrane Central Register of Controlled Trials, Medline, CINAHL, and EMBASE. The search strategies were reviewed within the team and developed with that assistance of an information technologist (Caspian Dugdale). Full details of the search strategies are presented in Appendix 1. The personal knowledge of the expert panel was also used to identify key papers and other sources of literature. Snowballing was employed to expand the searches in some areas which involved hand searches of specialist practice journals and the pursuit of secondary references. Queen's Printer and Controller of HMSO

20 Types of materials inclusion criteria To be included the item needed to provide information on the contribution of nurses to CDM an explicit and unambiguous way, within one of the target disorders. No methodological criteria were stipulated to ensure that the review was populated with a broad range of material detailing examples of the nursing contribution to CDM. The focus of the searches was to identify UK material, although material that had a potential clinical relevance to the UK was also included. The abstracts identified via the protocol search strategies were screened independently by two reviewers (FM and AF). Articles were rejected if both reviewers determined from the title and abstract that the article did not report any nursing practice in CDM within the target disorders. The reviewers met to discuss any uncertainty or disagreements. The level of agreement was assessed at 0.90 using the Cohen s kappa statistic (Landis & Koch, 1977). Full copies of all identified items were retrieved. There were some differences in the range and type of material utilised between the disorders. The MS review was limited to compensate for the fact that there have been two systematic reviews of the impact of nursing in MS, one undertaken by the project team (De Broe et al, 2001; Forbes et al, 2003b). Therefore, papers already incorporated into these reviews were excluded. The MS review was also able to draw on unpublished material from the two largest UK studies exploring the role and contribution of nurses in MS (Forbes et al, 2003a; While et al, 2009). The COPD review had to accommodate a recently completed expanded systematic review of the effectiveness of nurse interventions in COPD commissioned by the SDO (Candy et al, 2005). The aim of the Candy et al review was to systematically review relevant quantitative and qualitative studies involving nurse services for people with COPD who normally live in the community. They identified 7,000 citations and following full text retrieval 40 papers remained eligible; of these 13 were randomised controlled trials and two were systematic reviews. They divided the studies into two distinct groups: CDM type interventions for patients with COPD and interventions for acute exacerbations of COPD. The review also had a survey element which mapped the current provision of specialist nurse service for patients living in the community with COPD in England and Wales. The survey identified 234 specialist nurse-led services in England and Wales for patients with COPD in the community. As with the MS review, duplications were excluded and handled within the context of the review. Queen's Printer and Controller of HMSO

21 Data extraction and quality appraisal Extraction was facilitated by use of an extraction instrument embedded with an electronic database developed using the preliminary conceptual framework detailed earlier. The extraction tool was developed and refined through pilot searching. The extraction tool covered the following areas: Item details (type of item e.g. descriptive, evaluative, review etc.); Role attributes (type, level, setting, exact title, general description, novelty and substitution); Contribution to assessment (aim, method, focus, target and output); Contribution to health promotion (intervention type, level and outcomes); Contribution to clinical care (intervention areas, types and levels); Contribution to health care organisation (workforce development, management of care systems, health promoting systems, service development, care environment, user involvement, evidence-based care, continuity, and improved access to services); Contribution to CDM vertical structure (levels 1-3 of Kaiser model); enablers and inhibitors (factors recorded as enabling or inhibiting the contribution); and Details of any measured outcomes clinical, quality of life, health and wellbeing, service use and others (empirical studies). While the extraction tool provided a degree of prior structure in determining what was collected and how the data were organised, each section had open categories to enable other material to be identified beyond the original conceptualisation. Formal critical appraisal was undertaken for all research based items. The appraisal guidelines were based on the CASP guidelines for reviews of quantitative and qualitative research. It was then possible to assess each study as being weak, moderate or strong. Randomised controlled trials were graded against the following criteria: 1. Randomisation and adequate concealment 2. 80% follow-up 3. Intention to treat analysis 4. Outcome assessment blind Based on these criteria, studies were broadly subdivided into the following three categories: strong, all quality criteria met = low risk of bias; moderate, criteria 1 and 2 met = moderate risk of bias; and weak, high risk of bias. Queen's Printer and Controller of HMSO

22 Synthesis The extracted materials from each review were synthesised using narrative, tabulated and theoretical synthesis (Forbes and Griffiths, 2002). Narrative synthesis was used to provide a general commentary on the material, capturing trends in areas such as role development and practice innovations. The narrative was structured around the conceptual framework used to guide the data extraction, with examples being used to illustrate specific aspects of the contribution. The primary function of this synthesis was to confirm and extend the initial conceptualisation and to provide a platform to support the empirical inquiry. Tabulated synthesis was primarily used to express the frequency and strength of the extracted content. Thus it was possible to identify the range of effects of the nursing contribution on care structures processes and outcomes in CDM in relation to the strength of the underpinning evidence. This synthesis provides an overall pattern of the types of effects that nurses have been shown to have on CDM. Theoretical synthesis involved an interpretation of the collective material to generate novel insights into the nature of the nursing contribution to CDM. These insights were generated by analysing the underlying mechanisms involved in the different models of CDM presented within the material National participative events This element was informed by the output from Element 1 and aimed to develop further the theoretical models of the contribution of nurses to CDM through stakeholder consultation. Stakeholder consultation Participative conferences with no attendance fee were held in four regions (Newcastle [North East], Manchester [North West], London [South East] and Bristol [South West]) during February March The participative conference method builds upon the World Café method (Brown & Isaacs 2005) in which parallel table-top discussions are conducted using a focus group format (Morgan & Krueger 1998). Ethical approval was gained from MREC prior to recruitment. A number of strategies were employed to recruit conference participants. Efforts were made to gain a balanced representation regarding both geographical boundaries including rural and urban settings, the range of nursing roles and users across the three selected disorder groups (diabetes mellitus, MS and COPD). Information was sent to heads of nursing in Hospital Trusts and Primary Care Trusts inviting participation of qualified staff together with direct invitations to nurse leads in National Health Service (NHS) Trusts who had participated in the parallel survey of service leads together with professional opinion leaders identified through the disorder related Queen's Printer and Controller of HMSO

23 professional organisations (eg RCN, MSSN network). Recruitment through the snowballing technique (Atkinson & Flint 2001) became a prominent method in locating interested potential participants. Users were recruited through local health services and related local user groups supported by the disorder specific voluntary groups (MS Society, Diabetes UK, Breath Easy [British Lung Foundation]). Users were offered reimbursement for all their participation costs and the venues were selected to ensure easy geographical and disabled access. User participants were given detailed information relating to the conferences and their location to enable their participation. Users were recruited across the selected disorders and represented the various stages of the disease trajectories (COPD n=18; diabetes n=12; MS n=9; user representatives n=2). Each nurse participant was asked to identify their specialism and care was taken to recruit good representation across the disorders at each event. Participants were asked to confirm their intention to attend the events in an attempt to minimise last minute non-attendance as there was no cost attached to a conference place. Cancellations notified at least a week in advance were replaced by those who had expressed interest in participation on the waiting list where possible. Nurse participants were allocated to separate discussion tables according to disorder group and the user participants were located at user discussion tables but there was no attempt to separate the users by disorder group. The purpose of the table-top discussions was outlined, namely, to draw upon their experience and knowledge as stakeholders regarding the contribution of nurses to disorder health care both uniquely and with others. The value of all contributions to discussions however diverse was emphasized together with the importance of confidentiality and respect within groups. The World Café method emphasizes the power and importance of creating a hospitable space to promote collaborative dialogue and active engagement so that participation is encouraged and diverse perspectives can emerge to enrich discussions (Brown & Isaacs 2005). Each table-top discussion group was limited to a maximum of seven participants all of whom had the same focus, namely, nurse supporting a particular disorder or user. The table top discussions groups were limited in size to facilitate discussion and to promote maximum engagement and involvement in the data generation. Therefore the number of table-top discussion groups varied in number and composition across the data collection sites. Each discussion group was asked to provide up to 10 examples of actual nurse contributions to different stages of disease trajectories (at diagnosis; when new events occur or when there is a sudden change in a patient s condition; on-going care) both to the patient and their carer drawing upon their experience of practice. The participants were also asked to identify what Queen's Printer and Controller of HMSO

24 difference the nurse contribution makes at different stages of disease trajectories. Discussions relating to the different stages of the disease trajectory were allocated 50 minutes followed by a refreshment break. During the last period of the table-top discussions the nurse participants were asked to consider enablers and inhibitors to the performance of their roles while the users were asked to consider possible changes to the current nurse role (what nurses could give up and what they would like nurses to do). The groups were asked to record their data on a specially designed feedback sheet which was reviewed for clarity at the end of the discussion session by a researcher. Facilitation of the table-top discussions comprised clarification of the task set, answering queries and reminder of time with the addition of transcribing for user groups who needed support. The table-top discussions were not supervised by researchers but lead by participants themselves. The nurse groups were much more confident in completing the group discussion feedback sheets in comparison to the user groups. The data on the feedback sheets were subject to content analysis and classification using a framework approach (Ritchie and Spencer, 2002) derived from the theoretical models generated by the literature analysis. The data were coded by AW and ambiguous data items were discussed with the research team prior to the data coding National postal survey A cross-sectional survey comprising postal questionnaires was mailed after verbal contact with participants with follow-up (r ing) occurring at week 3 and week 6 as necessary. Mailing was managed in batches with data collection taking place May January Sample The Statistical Package for the Social Sciences (SPSS) randomly selected 100/116 of hospitals (Acute Hospital Trust [AHT]) and 100/303 of primary health care organisations (referred to as Primary Care Trusts [PCT]) from the full list of NHS Trusts (publicly funded health care organisations) in England. All teaching hospitals (Teaching Trusts [TT]) were selected due to the small number (n= 35). Sample participants (maximum three per health care organisation; nursing service leads for each tracer disorder of diabetes mellitus, MS and COPD) were identified through use of organisational websites, s, Directors of Nursing or Heads of Nursing, telephoning relevant departments of hospitals with clarification from specialist nurses regarding the service lead or most appropriate nursing lead to invite to participate. There was overlap between hospitals and primary health care organisations particularly for MS services. In some organisations it was Queen's Printer and Controller of HMSO

25 reported there was no nursing service for either diabetes, MS or COPD, or it was not possible to identify a named nurse lead (particularly within primary care). To increase the representation of primary health care organisations, advertisements were placed on specialist websites and s sent to professional groups resulting in an additional 23 participants (7.7% total sample, 35.0% PCT sample). Ongoing organisational turmoil especially within primary care added to the complexity of identifying potential participants and conducting a survey yielding an adequate response rate. Data collection instrument The questionnaire (Appendix 2) drew upon literature (DoH 1999, 2001b, 2005b) and comprised closed and open items to collect descriptive and categorical data. The following topics were addressed: nursing service offered (diagnosis, initial treatment, long-term treatment, management of complications and advanced disease care); nursing positions focusing or contributing to disorder care; existence of strategic plans, care pathways and multi-disciplinary care protocols; importance given to aspects of nursing care (medicines management; emotional support; clinical assessment; managing the care environment; information provision; symptom control; service development; care co-ordination); numbers of nurse prescribers; examples of cross-boundary working (maximum of 5 examples involving nurses); measurement of quality nursing care; maintenance of quality nursing care; and details of CDM initiatives developed within the health care organisation or local geographical area involving nurses. Data analysis The data were analysed using SPSS version 15. Descriptive statistics were used to analyse the data by tracer disorder and health care organisation type. One-way analysis of variance by ranks (Kruskal-Wallis test), Friedman s test, univariate analysis of variance and Kendall s coefficient of concordance test were applied to the ranking question. Qualitative data (responses to open questions) were coded by two members of the research team (BW & AW) and descriptive statistics reported on the frequency of categories generated by the content analysis. Ethical considerations Research ethics permission was sought and the study was deemed a service evaluation and therefore exempt from formal ethical approval. Queen's Printer and Controller of HMSO

26 2.3 Stage 2- Case-studies The study used a contrasting case study design to explore the contribution of nurses working in defined CDM systems (within the three tracer disorder areas) and to provide in-depth accounts of their contribution to the care system. A case was defined as a CDM system that had an explicit nursing component. Following the method of Yin (1994) multiple contrasting casestudies were selected to explore and extend the theoretical models of the nursing contribution developed in Stage 1. The specific objectives of this element of the study were: To describe the different contexts in which nurses undertake CDM, To explore the nursing contribution to CDM in relation to the following areas: Assessment Health promotion Clinical interventions Health care organisation, To explore the contribution of nurses to CDM in different clinical settings, and To explore different nursing roles in CDM Setting and participants The case-study sites were identified from within the Thames region. The sites served socio-economically and culturally diverse populations within inner-city, urban, suburban and semi-rural settings. The sites included care systems that operated within specialist, primary and continuing care settings. Table gives a brief description of each of the sites. Table Site description Disorde Site Description r Diabetes A B C MS COPD A B C A B C Tertiary diabetes centre (inner-city urban) Specialist diabetes centre (urban) Primary care based diabetes centre (sub-urban, semi-rural) Primary/secondary care MS service (inner city, urban, sub-urban) Specialist neurological/community rehabilitation MS service (inner city, urban) Tertiary MS specialist centre (inner-city urban) Tertiary COPD centre (inner-city urban) Specialist COPD team primary care (urban) COPD Specialist primary care (sub-urban, semi-rural) Queen's Printer and Controller of HMSO

27 A theoretically sampling frame was used to guide the selection of systems within each site, based on the patient journey and the vertically integrated Kaiser model (see Table 2.6). The systems were identified through an initial mapping exercise with the lead nurses for diabetes, MS and COPD in each of the study sites. Each nurse gave details of the different CDM systems in their areas. The lead nurses identified other nurses within each system who were recruited to the study for interview. Additional systems were identified through the other nurses recruited to the study following a cascade model (see Figure 2.4). Recruitment ceased once the theoretical sampling plan was populated. Queen's Printer and Controller of HMSO

28 Figure 2.2 SYSTEM CASCADE Nurse participants Nurse participants were recruited in each of the systems identified, again following a cascade model. The number of participants varied between systems depending on the numbers of nurses working within those systems. Patient and carer participants Patients were recruited from the participating CDM systems by invitation to complete a postal survey questionnaire. The patient s details were taken from the databases of the participating services. These databases contained patients who had contact with nurses for CDM and those who had no contact. They included hospital specialist services and primary care (general practice) database. Patients were also recruited via local patient groups within the south Thames region. In the patient s questionnaire they were asked to identify whether they had a carer or not and whether that carer was willing to participate Data collection Nurses The nursing data were collected through interviews and questionnaires. The interviews were digitally recorded with consent in the professional s workplace and lasted from 40 minutes - 2 hours. The interviews followed a topic guide, Queen's Printer and Controller of HMSO

29 based on the original conceptual framework and the themes identified in the literature review and from the stakeholder events. The topic guide comprised open ended questions to ensure that the issues of interest were addressed and to allow interviewees to raise issues that were of central concern to them. The topic guide for nurses aimed to explore the contribution of nurses to CDM and encompassed six core areas: 1. An account of their role within the care system (role evolution, service description, and main areas of function); 2. Their contribution to clinical assessment (assessing individual patients, initiation and methods of assessment, assessing risk, using technologies and patient & carer/family involvement); 3. Their contribution to health promotion (primary prevention, health education, facilitating self-care skills, public health and health promotion initiatives); 4. Their contribution to clinical interventions (medications and modulating therapies, social/ psychological interventions, carer involvement, prescribing issues and their contribution to facilitating the care system); 5. Their contribution to the health care organisation (including workforce development, management of care system, access to services, use of health technologies, service development initiatives, personal and service continuity); and 6. Their interactions and working relationships with other services in the care system, including level and context of cross-boundary working. The topic guide was tested prior to data collection; the length of the interviews was raised as a potential issue. All the participating nurses were asked to complete a questionnaire detailing their: professional background; qualifications; interactions with other professionals; education and teaching; caseload; links with other professionals; range/type of care provided; and interaction style with patients (see Appendix 3). The questionnaire was tested prior to data collection resulting in the reduction of its length with the removal of job satisfaction and organisational commitment measurement which the pilot study revealed were potentially contentious topics. Research ethics permission was sought. This element of data collection was considered a service evaluation Research and Development approval was gained prior to data collection. Patients and carers All the participating patients completed a survey questionnaire. The patient questionnaire comprised of the following question sets and standardised instruments: demographic items; disease specific items (duration and severity); Queen's Printer and Controller of HMSO

30 patient s experiences and views of nurses (mixture of Likert scales and open questions); their experience and views on the care that they received for their disorder (care availability, continuity, involvement in care and co-ordination), including a care satisfaction measure, the Client Satisfaction Questionnaire (CSQ_8) (Attkinsson & Larsen, 1990); items relating to self-care competence, behaviour (this included a scale measuring self-care, namely, mastery of self-care and engagement with care); and a measure of medication adherence (MARS, the Medication Adherence Rating Scale, Horne et al 1999); The carer questionnaire comprised: demographic items; items about care-giving activities; standardised measures of carer burden (Given, 1992) the impact of care on physical and mental wellbeing (including the SF36 physical function scale; and the HADS) (Zigmond & Snaith (1983); carer s experiences and views of nurses (mixture of Likert scales and open questions); their experience and views on the help and support they receive in relation to their caring role, including the CSQ_8 (Larsen et al 1979). Both questionnaires were tested prior to data collection resulting in reduction in their lengths and exclusion of economic data collection. Complete versions of both the patient and carer questionnaires can be found in Appendix 5. Research ethics permission was sought and gained as was Research and Development approval prior to data collection Data analysis Nurse interview data The digital recordings were transcribed in full. The transcripts were anonymised and the text data were imported into a qualitative data management package (Nvivo v.7) for data analysis. Nvivo was used because it promotes consistent categorisation of data (Lathlean, 2006) thereby facilitating transparency and rigour in the stages associated with data analysis (Welsh, 2002). The analysis followed a step-wise approach based on the procedures described by Mayring (2000, 2004). Step 1 An initial coding framework was defined based on the findings of the literature review. Queen's Printer and Controller of HMSO

31 Step 2 Each transcript was read and re-read transcripts and coded into thematic categories, following an iterative process to develop and expand the initial coding framework. Step 3 After all transcripts had been initially coded, a second stage of coding was undertaken within categories. Secondary coding was based on the specific actions that nurses were reported to perform within each element of CDM care. Each level of coding entailed reading and re-reading transcripts and the generation of new thematic categories. Nvivo s memo function was used throughout the coding in order to explain complex segments of the text, to note a possible relationship between codes, or to note as point of reference interesting and ideal quotes. Codes evolved over the course of primary and secondary coding, as familiarity and understanding of concepts and ideas grew. At this stage existing codes were scrutinised leading to segmentation and merging of codes or alternatively refined or development into new codes and thematic categories. The coding was undertaken by one researcher (FM), with another member of the team (AF) regularly verifying codes and categories. The generation of new themes ceased once thematic saturation was achieved. The final iteration involved a careful review of the relationships between themes and their underpinning codes and text segments, based on discussion and debate between (FM & AF). During this analysis the nurses accounts were compared and contrasted to identify shared and divergent relationships both in and between thematic categories, nursing groups and settings. The analysis of data then considered whether the themes raised in nurse interviews matched the original theoretical model from which the case was identified. Explanations for the lack of fit, if any, from within the data were sought and the original theory was developed accordingly. Nurse questionnaire data The questionnaires were analysed using SPSS version 15. The closed and fixed response item data were used to compile descriptive statistics on participants and their activities in CDM. For categorical and ordinal data this involved counts/percentages and median/inter-quartile range; and for continuous variables the mean and standard. Data reduction using factor analysis was performed to identify underpinning constructs within the questionnaire data. Questionnaire items were attributed to a construct if the factor loading score >0.4. The internal consistency of the constructs was assessed using Cronbach s alpha, the minimum acceptable level of reliability was Comparisons were made between the disorder groups to test if there were differences in the types of activities performed. Queen's Printer and Controller of HMSO

32 Patient and carer data The patient/carer questionnaire data were analysed to yield descriptive statistics detailing: patient characteristics; disease severity; level of physical disability; quality of health care provided; self-care performance; their experience of nurses and details of the care they provided. Data reduction was performed to provide summary scales for some of the question banks within the questionnaire, following the same approach as outlined for the nurse questionnaire data. Open responses were imported into SPSS version 15 and was subject to content analysis following Mayring (2004) inductive category formation approach. This involved: 1. Forming general definition of categories. This stage was defined by the core themes raised from the case studies, these were; health assessments, health promotion, clinical intervention and health care organisation. 2. Gradual category formation from the material including formation of new categories and revision of old categories. This stage involved coding open response data which represented units of meaning according to descriptions and narratives of patients / carers experiences (Miles and Huberman, 1994). 3. Revision of categories and check of consistency of coding frame throughout coding process. At this stage existing codes were scrutinised leading to segmentation and merging of codes or alternative refinements or development into new codes according to emergence of new themes. 4. Final processing of material including check of category summative reliability Some specific segments of text were not coded because their meaning was unclear or ambiguous. Statements that did not offer any contextual meaning or were ambiguous included statements such as help, and she gives me all important things. Finally, category frequencies were generated enabling comparison for data between disease groups using SPSS version 15. In addition to the production of descriptive data the analysis also addressed the following specific questions: Where there differences between disorders? Where there differences between those who had or had not seen a nurse? Where there differences between specialist and non-specialist nurse? Where there differences in relation to primary and secondary (specialist outpatient) care? Queen's Printer and Controller of HMSO

33 The analysis was data specific with comparisons of: categorical and ordinal data were compared using either Chi-squared or Kruskal Wallis tests; and continuous variables were compared using either t-tests or analysis of variance (ANOVA). A minimum standard 0f 5% significance was observed throughout the analysis. 2.4 Synthesis The process of synthesising the collective data streams was driven by the underpinning conceptualisation defined in Figure 2.1. This model influenced both data collection and analysis. The synthesis developed new theoretical insights within this broad conceptual model. The multiple data sources were used to confirm and/or challenge those insights building from the literature review, through the nurse accounts to the patient s experience. The synthesis integrates the data sets to provide accounts of the nursing contribution in terms of: Assessment; Health promotion; Clinical interventions; Care organisation; Impact on care. In the next chapter the findings of the study are presented as synthesis in relation to the above domains. The data from each theme are presented discretely with an overarching commentary and summary of the integrated findings. 2.5 Ethics The study had full ethical approval and honorary contacts were secured by each member of the research team who undertook data collection. Each stage of the study was approved by a different Multi-centre Research Ethics Committee. Honorary Contracts and Research Passports were secured by each member of the research team who undertook data collection. All data were anonymised and the voluntary nature of the study emphasised. Data was storied in accordance with the Data Protection Act (Office of Public Sector Information1998) ( and College guidelines. Substantial delays in the intended timetable were incurred while securing he required approvals and honorary contracts. Queen's Printer and Controller of HMSO

34 3. Findings The findings are presented from the different data sources following the integrated conceptual model detailed in Chapter Data sources The multi-method approach generated different data streams, including: literature items; nurse data; patient and carer data Literature items In total 160 items were included in the main review. The number and sources of materials are identified in Figure 3.1. Full details of each review are presented in Appendices 6-8. Overall, most items were evaluative in nature; although this was largely because of the high proportion of evaluative studies in the diabetes review (see Table 3.1.1). The lower proportion of evaluative studies in MS and COPD was related to the exclusion of studies from the established reviews (see section 2.2.1). Queen's Printer and Controller of HMSO

35 The majority of the material was from the UK (see Table 3.1.2). The high proportion of UK literature in the COPD review was again related to the exclusion of studies already included in the previous COPD. Role type, level & setting The main type of role found within the literature was that of the disease nurse specialist (see Table 3.1.3). This finding was consistent in all three disorders. Practice nurse roles were mainly identified in relation to diabetes, with some examples in the COPD literature and none in the MS literature. There were no examples of the community matron role and all the case-manager examples were found in non-uk literature, although there were a few examples of the district nursing contribution. The lack of such examples reflects the novelty of the role and that the community matron role is largely generic and not disease specific. There were a small number of examples from other specialist level nurses (continence, palliative care and psychiatric) and a few accounts of the work of general nurses. Queen's Printer and Controller of HMSO

36 Table Role type n (%) Specialist nurse 75 (47) Practice nurse 21 (13) Nurse practitioner 7 (4) District nurse 5 (3) General nurse 3 (2) Nurse consultant 5 (3) Case-manager* 5 (3) Nurse educator* 4 (3) Multiple roles 4 (3) Continence nurse Community nurse Staff nurse (2) (1) (1) Palliative care nurse 1 (1) Psychiatric nurse 1 (1) Not specified 22 (13) Total 160 (100) *= roles not specific to UK The majority of the roles were classified at the specialist disease level, reflecting the dominance of the specialist nurse roles in the literature (see Table 3.1.4). The generic roles comprised mainly practice nurses in COPD and diabetes, with a very small number of examples at the registered nurse level. In terms of place of care there were examples in all settings except for continuing care (see Table 3.1.5). It was also necessary to add an additional category of tele-care. This category was created to accommodate a couple of examples from the diabetes search that involved a nurse-led telephone followup service (Kim and Oh 2003; Kim et al. 2005). Queen's Printer and Controller of HMSO

37 * Two items from COPD were not attributed due to multiple places of care National participative events Stakeholder consultation sample Table presents a summary of conference participants. Table Summary of stakeholder conference participants Capacity/ Total number invited Venue Diabetes MS COPD Service Users/Other Total 50/73 Manchester Thursday 15 th February Manchester Non-Attendees/ Cancellations /80 London Friday 16 th February London Non-Attendees/ Cancellations /63 Bristol Friday 23 rd February Bristol Non-Attendees/ Cancellations /71 Newcastle Friday 2 nd March Newcastle Non-Attendees/ Cancellations Queen's Printer and Controller of HMSO

38 Figure 3.2. NURSE PARTICIPANTS AT STAKEHOLDER EVENTS There was a good geographical coverage of users representing the three disorders at all the data collection sites as can be seen in Figure 3.2. However, unlike the nurse table-top discussion groups, the users groups were mixed in terms of disorders and included user representatives where they were present. Overall the data recorded on the specially designed feedback sheets was limited in comparison to the nurse table-top discussion groups perhaps reflecting the challenge of reaching a conclusion within a group of people who had never previously met and a reticence to record views. In some cases it appeared that the data represented the view of an individual rather than a group. Queen's Printer and Controller of HMSO

39 Figure 3.3. SERVICE USERS PARTICIPANTS AT STAKEHOLDER EVENTS National postal survey Sample The final sample size comprised 421 individual participants from 190 different health care organisations across England. The response rates for each health care organisation are set out in Table The responses to 3 follow-up mailings are set out in Table Job titles of participants are listed in Appendix 4. Queen's Printer and Controller of HMSO

40 Table 3.1.7: Total distribution and response to postal survey Diabetes MS COPD Total response Total sent Response rate PCT (21.8%) % Teaching Trust (19.8%) % Acute Hospital Trust (58.4%) % Totals % (34.9%)* (25.2%)* (39.6%)* * (Percentage) = Responses Table 3.1.8: Responses to 3 mailings Primary response Follow-up 1 Follow-up 2 Total response (week 3) (week 6) n=210 (70.5%) n=55 (18.5%) n=33 (11.0%) n=298 (100.0%) Nurse participants case study interviews Sixty one nurses were identified and interviewed during the case-study stage of the study. The types of nurses interviewed (by disorders) are detailed in Table The majority of participants were either practice nurses (except for MS) or specialist nurses, with community nurses, non-disease specialist nurses and general nurses also being represented. Queen's Printer and Controller of HMSO

41 Only 40 (66%) of those interviewed completed the questionnaire. The characteristics of those nurses who completed a questionnaire are detailed in Table Queen's Printer and Controller of HMSO

42 3.1.5 Patient participants patient survey Of the 3086 patients invited to participate in the survey 1017 responded yielding 816 completed questionnaires (see Table ). The response rate was consistent between disorders and settings, although the response level was higher from voluntary group networks and slightly lower in primary care. The demographic characteristics of the participants are set out in Table There were more female participants, a difference that was largely explained by the inherent gender split in MS which is 30 :70 (male : female). Queen's Printer and Controller of HMSO

43 Participants were generally middle-aged, although the MS population was significantly younger, again reflecting the typical demography of these diseases. Black and Asian participants contributed over 20% of the sample, with most of these being patients with diabetes. A higher proportion of patients with COPD lived alone and had been widowed reflecting the older age of this group. Patients with MS and diabetes tended to have higher educational levels than the COPD population, again reflecting the age difference. The clinical characteristics of the participants are set out in Table Overall the participants had been diagnosed for more than 10 years (range 0 to 52 years), although the COPD sample had had their disease for slightly less time. The majority of patients regarded their disease as being moderate in terms of its severity, with patients with diabetes being significantly more likely to describe their disease as being mild in nature. Physical disability in terms of mobility was highest in the MS participants and lowest in those with diabetes. In terms of the disease specific descriptors, the majority of those with diabetes were not treated with insulin. Two thirds of patients with diabetes had had their glycated haemoglobin (HbA1c) assessed in the last 12 months, although 30% (n=96) of patients did not know whether they had had HbA1c done or not. The mean HbA1c for those who could recall was 7.4 (SD1.9, range 5-18) suggesting that the majority, were relatively well controlled. The MRC respiratory scale (Fletcher et al 1959) data suggested that the COPD participants had quite severe disease. The data from the MSIS_29 (Hobart et al 2001) suggested that MS had a moderate impact on patients both physically and psychologically. The location of care divided relatively equally between primary and secondary care with a smaller proportion receiving shared care and a few reporting receipt of domiciliary care. The diabetes care was biased toward primary care and MS towards specialist care with COPD dividing more or less equally between the two. Queen's Printer and Controller of HMSO

44 Queen's Printer and Controller of HMSO

45 Queen's Printer and Controller of HMSO

46 3.1.6 Carer participants Unfortunately only 29 carers returned completed questionnaires with none from people with diabetes (see Table ). Hence any meaningful assessment of the contribution of nurses to carers was not possible. Queen's Printer and Controller of HMSO

47 3.2 Assessment Literature review findings- assessment Fourteen themes that define the function and performance of the assessment contribution were identified from the literature. Case-finding and screening Nurses are involved in identifying patients who: are at risk of a disorder; are currently undiagnosed; have been incorrectly diagnosed; have a particular disease related problem; or have a particular (inappropriate) treatment regime. In one COPD example patients were screened for accelerated respiratory decline and targeted with smoking cessation support (see Example 1). Example 1. Screening for loss of lung function 141 patients registered with a general practice known to be current smokers but with no major mental or physical illness were telephoned and 22 agreed to participate in the study. Initial assessment comprised: smoking history, GHQ 28, carbon monoxide level in expired air, FEV1. Repeat measurements were taken at 3 months and 12 months. The study showed that it was feasible to screen smokers of working age in a nurse-run respiratory clinic. Wells, S. & de Lusignan, S. (2003) Does screening for loss of lung function help smokers give up? British Journal of Nursing. 12 (12): Supporting the diagnosis There was only one explicit example from a non-uk COPD study in which nurses were actively diagnosing patients. However, nurses were involved in collecting the data necessary to provide or confirm a diagnosis and in the diagnostic process, both in supporting patients during the diagnosis and in assessing problems and needs arising from the diagnosis (information and psychological support, see Example 2). Queen's Printer and Controller of HMSO

48 Example 2. Nurse-led diagnostic clinic. A diagnostic clinic is nurse coordinated comprising neurologists and nurses and access to all relevant diagnostic tests on the same day as the clinic visit. There is access to test results within 4 weeks, emotional support from the nursing team and long-term provision of education and advice. The clinic has good links with community based services and has direct access referrals to other members of the MDT eg continence nurse, physiotherapist and occupational therapist. Porter, B & Keenan, E. (2003) Nursing at a specialist diagnostic clinic for multiple sclerosis. British Journal of Nursing. 12: Allocation to care Nurses were involved in allocating patients to different care management systems and a range of other services and professionals. Nurses were also involved in deciding the frequency and intensity of follow-up. Nurses were also allocating care across the nursing workforce referring patients to other nurses. For example, the practice nurse may refer the patient to the specialist disease nurse or to a generic nurse specialist such as a continence nurse. Confirming events and problems Nurses confirm for patients whether a particular event or problem has occurred (e.g. relapse or hypoglycaemic episode). Nurses were involved in confirming the nature of different problems (symptoms, complications and side effects) and the level (grading) of the problem. Such assessments were often made with reference to the multidisciplinary team and management guidelines. Evaluating progress Nurses are involved in the on-going monitoring of patients to determine changes (worsening and improvement) in the patient s condition, their responsiveness to therapy, concordance with therapy and the adoption of self-care behaviours. However, there was variation in the level of involvement in the assessment from simply recording the data to interpreting the meaning of the data with the patient and to establishing treatment modulation. Evaluating safety Nurses are involved in monitoring and/or assessing the safety of the care and therapy provided which included functions such as checking treatment regimes (drug interactions) and the performance/maintenance of equipment. Queen's Printer and Controller of HMSO

49 Multi-faceted assessments Nurses in CDM are generally involved in collecting a broad range of data. The areas encompass: physical, psychological and social functioning; clinical data (BP, blood results etc.); self-care behaviours (lifestyle, concordance); medical history; symptoms; disease specific problems; and social support (see Example 3). However, there were very few details and much variation in the assessments reported. No material reporting a standardised approach to assessment was identified. Example 3. A typical nurse-led general diabetes assessment. A nurse-led assessment is described comprising: Physical and biochemical components (noting of osmotic symptoms, BMI, BP, HbA1c, total cholesterol, HDL: cholesterol ratio, smoking habits, renal and liver function tests if necessary) Lifestyle assessment (diet, activity, adherence to medication, smoking cessation) Knowledge assessment (understanding of disease processes) Wallymahmed, M., McCrimmon, R. & Woodward, A. (2003) Intensive intervention in specialist nurse-led clinics. Journal of Diabetes Nursing. 7(9) Ownership of data levels of interpretation It was not always fully clear for whom the assessment data were intended. While in some examples the data were collected to inform nursing decisions and care, in other the data seemed to being collected to feed the clinical system. The distinction here is between the nurse as a simple data clerk and the nurse as an independent data synthesiser and risk assessor. There is also the question of how nurses work with other professionals to interpret data as each may have different views on the same data within the context of a particular patient. The threshold of the nursing influence within the assessment process may be related to other factors such as the level of skills, expertise and experience of the nurse. An issue to consider is the nursing voice (volume and tone) within the context of the assessment process and how that voice is responded to by others. The context of the work may also be important, in some situations the system becomes dominant and the need to put information on the system may outweigh an interest in interpreting the data. This situation can occur in general practice where data maintenance is important for payment under the Quality Outcomes Framework (QOF) (NHS Employers 2009). A key consideration is, therefore, the extent to which the nurse is alienated from the overall purpose and product of the assessment. Queen's Printer and Controller of HMSO

50 Common assessment different approach In the diabetes review one item highlighted that, while nurses and doctors can collect similar data as part of an assessment, the approach that they adopt is distinct (see Example 4). While nurses tend to emphasise the patient s subjective experience, doctors emphasise the clinical detail. Example 4. Doctors and nurses consultation styles. 100 recorded consultations were analysed and revealed that nurses and doctors consultations had distinct features. Nurses communication was characterised by eliciting the patient s perspective of their responsibility and behaviour and encouraging patient participation. In contrast doctors tended to begin from a more medical point of view with an emphasis upon seeking clinical solutions and intervention to the neglect of patient behaviour. Patients tended to reveal more of their understanding to nurses. Collins, S. (2005) Explanations in consultations: the combined effectiveness of doctors and nurses communication with patients. Medical Education. 39: Assessment Technology The level of technology used by nurses to support assessments is extensive. Technologies operate both at the patient interface (communication technology) and in the physical parameters of data collection (data collection technology). In some cases the technology involved both the communication and collection of data. For example, in COPD nurses were supervising patients using continuous monitoring devices linked via computers (internet) and telephone systems enabling central monitoring and rapid detection of problems (see Example 5). However, it is not clear the extent to which technologies are used or the extent to which nurses are involved in the design and use of such technologies. There were no specific examples of how technologies (e.g. scoring systems or computer models) were used to perform specific risk assessments. Example 5. Tele-monitoring of patients A study of a tele-monitoring adjunct to a home visiting service is described (n=121 home hospitalisation intervention; n=101 conventional care). The home hospitalisation care model comprised: home visits supported by a chronic care management centre which collects clinical information and provides telephone support to patients. Clinical data were collected and delivered to the monitoring centre via the telephone for on-going monitoring of clinical status. Additionally patients had access to 24 hour telephone support either through telephone operators or an automated system during out of hours. The pilot data suggested that the intervention was effective in decreasing hospital admissions and increasing quality of life during the first year. Alonso, A. (2004) A new model for home care for COPD. Studies in Health Technology & Informatics. 103, Queen's Printer and Controller of HMSO

51 Assessment level, depth and frequency It was clear in all the reviews that the level of assessment provided by nurses varies greatly within and between disorders (see Example 6). Such variation is unsurprising given the broad range of practice and the highly individual nature of patient needs (varying from the management of multiple and complex disease related to problems to the need to have their visual acuity checked). Nonetheless, questions remain regarding what is the optimal threshold for assessment for sub-groups of patients in terms of the frequency and level of regular follow-up assessments. Example 6. Assessment practices of MS nurses (n=22) from the MSSNFP evaluation Physical assessment: most of the assessments were based on ADL models using a checklist approach. Physical assessments were generally based on an oral history with few physically examining the patient. A few MS nurses were also undertaking doctor substitution roles either by performing full neurological assessments or by assessing patients fitness for steroids. Psychological assessment: these assessments tended to be informal based on the development of a relationship with the patient. Very few nurses used any formal or structured tools to assess depression or anxiety, most said they new how to recognise mood changes. Half of the nurses assessed the psychological state of carers independently to the patient. Social assessment: most of the nurses provided some assessment of employment issues with benefits and housing assessments being more variable. Overall there was much variability in the type level and frequency of assessments, this variation was related to the context in which the nurses worked particularly between those working in neurology settings and those working in community rehabilitation. Forbes, A., While, A., Mathes, L. & Dyson, E. (2003a) The MS Society Nurse Funded Programme (MSSNFP) Evaluation Final Report. MS Society, London Marginalised patient populations There were a number of examples of nurses extending care systems to patients from marginalised populations (specifically older people and minority ethnic groups). In some of the examples this meant an adjustment in the assessment approach to accommodate the different needs of those populations (see Example 7). Example 7. Needs Assessment. An integrated clinic in a general practice was established to address identified inequalities in the patient population based in a rural area with limited public transport. An agreed protocol set out a consultation pathway involving different members of the primary care team. All patients were seen at the multi-disciplinary annual review clinic and notes were shared to promote continuity of care. The evaluation was positive. Hollick, J. (1999) A model of integrated diabetes care in primary care. Journal of Diabetes Nursing. 3(2): Queen's Printer and Controller of HMSO

52 Association between assessment and therapy The connection between the assessment and the subsequent action may be important for the validity of the assessment. The danger of not linking assessment and action was highlighted in the diabetes review by a case that showed how, despite identifying patient needs, little progress in clinical care was made because the intervening party (the doctor) did not act on the assessment (Forbes et al, 2004). Patients preference for nurse assessment In the MS review one study suggested that patients value the assessment of a nurse compared to other health professionals (Forbes et al 2003b). Therefore, exploring patients preferences for assessment by different professionals may reveal much about what nurses add to the assessment process in CDM National participative events - assessment At diagnosis The data relating to the contributions of nurses at diagnosis are set out in Table There was some consistency both across disorders and sites regarding some contributions, however, there were also some variations. Thus nurse participants reported consistent contributions to supporting the diagnosis, building the clinical picture and assessment of health information needs. However, the reported use of assessment tools and assessment of carer/family needs varied. When new events occur The data relating to the contributions of nurses when new events occur or when there is a sudden change in the patient s condition are set out in Table There was some consistency both across disorders and sites regarding some contributions, however, there were also some variations. Thus nurse participants reported consistent contributions which included building the clinical profile and referral to others. However, reported contributions to on-going assessment and assessment of information needs varied both across the disorders and data collection sites. On-going care of patients The data relating to the contributions of nurses to the ongoing care of patients are set out in Table The nurse participants reported consistent contributions to the ongoing care of patients which included monitoring patients and referral to others. Reported risk assessment varied both across the disorders and data collection sites. Queen's Printer and Controller of HMSO

53 Table The contributions of nurses at diagnosis Assessment Sub-themes Data example Identified MS DM COPD S1 S2 S3 S4 Pre-diagnosis Opportunistic/annual screening. Pre-diagnostic testing. Screening early diagnosis. Supports diagnosis Build clinical profile Uses assessment tools Assess health beliefs/information needs Assesses impact on family/carers Referral to others Making diagnosis & differential diagnosis. Confirm diagnosis by checking results, investigations and history. Taking & ordering appropriate tests. Diagnostic testing. History taking. Multi-system, holistic history taking. Advanced skills to assess. Advanced individual assessment. Psychological assessment. Identify unmet needs. Foot assessment. Blood glucose monitoring. Clinical aspects of spirometry. Assessment including tools. Varied assessment tools ie Guy s, fatigue, spasticity, mood, continence etc Identify preconceived ideas. Working within people s health beliefs to tailor information and support. What they already know. Assessing knowledge base of condition. Referrals to young carers support, carer support. Time for relatives to ask questions/express fears/concerns find out what they want to know Signposting to other services. Identify if patient would benefit from input of carer agencies. Refer to support groups. Referrals to MDT. Queen's Printer and Controller of HMSO

54 Table When new events occur or when there is a sudden change in the patient s condition Assessment Sub-themes Data example Identified MS DM COPD S1 S2 S3 S4 Undertakes triage Ability to triage. Speedy referral. Telephone advice/triaging. Build clinical profile Ongoing assessment Assesses health beliefs/information needs Referral to others Recognise problem. Physical and psychological assessment of event. Nurse often identifies the event. Assessment for recognition of differential diagnosis. Order X ray. Investigations eg CXR. Identify comorbidities. Expertise that allows determination and cause of problem. Follow up and monitor. Knowledge of patient s stable condition. Knows when to change treatment or refer on. Reassessment. 6/12 review. DMT monitoring. Monitoring potential complications. (Check) patients understand condition and know when to recognise changes and know how to deal with it Rapid access to appropriate HCP. Signpost if required. Refer patient onto other professional services. Signposting to appropriate service eg podiatrist if foot ulcer. Referrals. Queen's Printer and Controller of HMSO

55 Table On-going care of patients Assessment Sub-themes Data example Identified MS DM COPD S1 S2 S3 S4 Expert assessment Expert diagnostic skills leading to early detection of problems. Expert assessment. Expert knowledge of what is MS and what is not. Differential diagnosis. Holistic assessment. Complex patient review. Knows when to change treatment. Identify co-morbidities. Monitoring Reassessment. Regular review. On-going assessment. 6/12 review. Disease modifying therapy monitoring. Monitoring potential complications/crises. Continuing core assessments. Nebuliser assessment. Six monthly reviews or more often according to patient needs. Uses assessment tools Depression scores. Risk assessment Referral to others Complex risk assessment. Identification of patients at risk of complications. Referrals. Signposting to other agencies. Refer on. Signpost to appropriate professional. Queen's Printer and Controller of HMSO

56 3.2.3 National postal survey Importance of particular aspects of nursing Clinical assessment was ranked as the most important overall contribution followed by symptom control and emotional support. There were statistically significant differences in the rankings for symptom control by organisation type (Kruskal-Wallis H=0.045) with acute hospital trusts reporting this as having more importance (mean 2.86, SD 1.69) than in primary care trusts (mean 3.33, SD 1.98) or teaching trusts (mean 3.90, SD 2.11). Despite concordance tests indicating a low level of agreement across health care organisations and tracer disorder groups, the aspects of nursing related to the individual patient were consistently ranked above aspects relating to the care environment. The rankings are set out in Table Table Importance of aspects of nursing care by Trust type (disorders combined) Key: HCO Health Care organisation PCT Primary Care Trust TT Teaching Trust AHT Acute Hospital Trust % within each HCO Queen's Printer and Controller of HMSO

57 Table Importance of aspects of nursing care by disorder SDO Project (08/1605/119) Nurse interviews & questionnaires - assessment The participating nurses rated the strength (mean score and standard deviation, scale 0-100) of their assessment activity as: 78 (SD19) for selfcare behaviour assessment; 78 (19) for care effectiveness and quality assessment; 78 (SD21) for risk assessment; 66 (SD25) for carer assessment; 54 (SD22) for clinical nursing assessment (pressure areas, continence, nutrition); 53 (SD21) for psychosocial assessment; and 49 (SD28) for preliminary screening and diagnosis. There were significant differences between the disorder groups with the diabetes nurses rating their assessment contribution lower in relation to clinical, psychosocial and carer assessment (see Figure 3.4). Queen's Printer and Controller of HMSO

58 Figure 3.4 NURSING ASSESSMENT The nurses also rated how frequently they used specific assessment approaches (see Table 3.2.6). The data showed that the assessment of activities of daily living was the most frequently used method. There were some significant differences between the disorder groups in the methods used: patient dairies were more common in diabetes (this would include blood glucose monitoring) while physical examination was more common in MS. Table Assessment methods (0-never to 4-always) Method Median IQR Daily living schedule 4 0 General health data (e.g. weight) 4 1 Patient diary 4 1 Clinical measures (e.g. BP) 4 1 Clinical blood tests 3 1 Standardised test physical function 3 1 Pressure risk scale 3 2 Patient data record 2 1 Check list 2 2 Benefits schedule 2 2 Social coping scale 2 3 Standardised tests mental function 1 2 Anxiety and depression measures 1 2 Risk assessment protocol 1 3 Physical examination 0 2 Queen's Printer and Controller of HMSO

59 The interview data both confirmed and extended the themes identified in the literature review. The themes are summarised in Figure 3.5 with a full overview of the themes being found in Appendix 9. While the themes were discrete, there were also interrelated. In relation to initial assessment, the clinical profile building theme was related to finding underlying problems. The nurses described assimilating a wide range of clinical facts with the patient s experience and story to identify the key areas that they and the patient needed to work on. Similarly, the confirmation of diagnosis (mainly COPD and diabetes) was related to the need to discuss and explain the diagnosis. In relation to ongoing assessment the pattern was for both strategic (systematic) reviews of patients (this is a very established part of diabetes care) clinical needs and for ongoing assessment to identify and monitor specific complications and issues. The identification of problems sometimes requires additional assessment to determine the suitability for referral to other services, for example, whether a patient with diabetes required referral to the podiatrist or a specialist foot clinic. The nurses described how they used a wide variety of technology to support their assessments which included the use of specific devices to measure physiological processes (e.g. bladder function) or clinical data (e.g. blood glucose). In addition, nurses reported using psychological screening tools to measure depression and anxiety. Clinical templates are very influential in guiding nursing assessments in CDM, particularly in diabetes where clinical data are complex. Queen's Printer and Controller of HMSO

60 Figure 3.5 SUMMARY OF ASSESSMENT THEMES SDO Project (08/1605/119) Queen's Printer and Controller of HMSO

61 In addition to the technologies available to support nurses in CDM, the nurses also reported relying upon good communication (conversational skills) and observation (reading the patient s response) to determine patient needs and priorities. These skills may also help uncover underlying or hidden problems. In COPD and diabetes identifying at risk patients or those in early clinical disease is an important objective and nurses reported contributing to this area of care: So we re looking at the smokers first because obviously they re more at risk but there s still a snapshot, a group of patients, probably about 200 who are on inhalers and we still haven t got a diagnosis for them (Practice Nurse, COPD). Involving carers and family members in the assessment process was not one of the strongest themes. However, in all disorders there was some reference to the inclusion of family and carers in identifying issues and concerns, although overall the nurses referred to involving the family members to determine the needs of the patient rather than independently assessing their own needs Patient perspectives - assessment themes Patients were asked to identify the most import thing that nurses do for them and the one thing that they would like nurses to do more of and less of (a full overview of what patients reported is presented in Appendix 10). The assessment themes from those questions are detailed below: The one most important thing that the nurse does for you? Ninety five patients reported that the most important thing that the nurse contributed to their care were assessment related activities, such as conducting patient s assessments (n=47); multi-faceted assessments (n=39); evaluating progress (n=7) and managing assessment technology (n=2) The one thing that you would like the nurse to do more of? Only twenty four patients reported wanting nurses to do more assessment related activities, such as conducting patient s assessments (n=12), and multi-faceted assessments (n=8). Queen's Printer and Controller of HMSO

62 3.3 Health Promotion Literature review findings - health promotion Health promotion was evident at all levels in the reviews, although in MS primary prevention is clearly not possible. In each disorder nurses were key providers of patient information and self-care support. The role of nurses in primary prevention and within wider public health initiatives was not well reported in the literature. The themes that emerged from the reviews in relation to the health promoting interventions provided by nurses are detailed below: Primary prevention Overall there was a very limited account in the reviews of nurses leading or delivering primary prevention interventions or any interventions at the population level. Examples included vaccination, smoking cessation and promoting awareness of preventive measures across a community (see Example 1). Example 1. Primary prevention. A diabetes centre was established in an inner city PCT to provide a base for all PCT and out-patient services using Neighbourhood Renewal Fund monies with the following aims: to raise awareness of diabetes in community ethnic groups; to raise awareness of how to prevent diabetes through exercise and healthier lifestyles; to help in the establishment of local Expert Patient groups and to help achievement of NSF standards 1,2 and 3. Over 30 group education sessions have been held in many different locations, some with lay teachers speaking different languages including Turkish, Gujarati, Hindi and Urdu. Screening for diabetes was also offered. After 6 months it was reported to be a successful initiative which has raised awareness of diabetes and how it may be prevented. Jesson, A-M., Kara, P. & Sanal, E. (2005) Coping with diabetes project Practical Diabetes International. 23(2): Health education Nurses deliver to patients the on-going information that they needed to manage their disorder on a daily basis. Much of this support was unstructured and responded to patient needs and problems. Nurses were also involved in tailoring education to meet the needs of different groups of patients, such as those from a particular ethnic background. However, the extent to which patients value this support, how effective it is and how it is modulated to meet the needs of individual patients was unclear. Queen's Printer and Controller of HMSO

63 Group education In addition to individual education, nurses are involved in delivering group education sessions (see Example 2). There were no specific details in the material indicating the benefits and applications of group or individual education. Example 2. Getting to grips course 'Getting to Grips with MS' courses normally consist of one session a week for four to six weeks. It is for people newly diagnosed and their partners/carers or friends. The objectives of the course are: Provide knowledge and understanding of the nature of the condition Explain how MS affects different people in different ways Explain where to get help and information Explain how to access services and likely waiting times Discuss treatment and management issues Help people develop coping strategies Establish a group that is mutually beneficial and supportive Getting to grips courses are usually held in the evenings as many of the attendees are still working. Health education - structured The materials contained a number of examples of more structured approaches to patient education based on formal curricula (see Example 3). Nurses are being trained to deliver these programmes and some are also being quality assured. In diabetes these approaches have been tested in clinical trials and show clinical benefits. There is also an emphasis in ensuring that all patients are given the opportunity to attend such programmes. In many cases these programmes are multidisciplinary. Queen's Printer and Controller of HMSO

64 Example 3. DAFNE (Dosage Adjusted For Normal Eating) Diabetes nurses play a key role alongside dieticians and diabetologists in delivering this structured patient centred education programme. The underlying assumption of the approach was that Type 1 diabetes should be managed by insulin replacement as needed and not by dietary manipulation to fit in with set amounts of prescribed insulin. The course provides patients with the skills necessary to enable patients to replace insulin by matching it to carbohydrate in a free diet on a meal-by-meal basis. The course last 5 days is based on adult learning principles and is often led by diabetes nurse specialists. The programme has been the subject of a RCT and after 6 months, those who had attended the DAFNE training courses had experienced a fall in their HbA1c of 1% compared to the control group, although at 1 year this slipped a little, the HbA1c was still 0.5% lower in the DAFNE group (a clinically important difference). DAFNE Study Group (2002) Training in flexible, intensive insulin management to enable dietary freedom in people with type 1 diabetes: dose adjustment for normal eating (DAFNE) randomised controlled trial. BMJ; 325: 746. Psychological education In addition to having a more structured and systematic approach to patient education, there is an increasing emphasis on involving patients based on adult learning models (patient participation). Involving psychological theory is also becoming important with empowerment based models in which the patient identifies the main problems to work on. In some cases programmes have been developed that are based on specific psychological approaches such as self-efficacy, motivational interviewing and cognitive behavioural therapy. The latter two are particularly well developed in diabetes. Information support Information provision was a strong theme of activity across all three reviews. In the MS review, information provision was a particularly strongly represented in the material with quite sophisticated strategies responding to a range of needs at different points in the disease trajectory. Involving family and carers Some of the initiatives encouraged family, partners and carers to attend education sessions. While the processes and mechanisms for this involvement are not clearly identified, an underlying premise was that family members and carers are important in the successful adoption of positive self-care behaviours. Queen's Printer and Controller of HMSO

65 Developing self-care behaviours The major intention of the education provided by nurses was to develop self-care behaviours which include: lifestyle (diet and exercise); managing therapy (concordance); using services effectively; and being able to understand their symptoms and problems and respond appropriately to them (see Example 4). Example 4. A group education based fatigue management programme Fatigue is a disabling symptom for many people with MS and a major reason for unemployment. A fatigue management programme comprising weekly sessions over 7 weeks was established facilitated by an OT and MS specialist nurse. Baseline data were collected from 7 participants using MFIS, MS Impact Scale and Canadian Occupational Performance Measure (COPD). At 3 months post-course the MFIS scores indicated that the patients were experiencing a reduction in their fatigue levels & COPD scores indicated overall increase in performance and satisfaction in activities of daily living. Ward, N. & Winters, S. (2003) Results of a fatigue management programme in multiple sclerosis. British Journal of Nursing. 12: National participative events - health promotion At diagnosis The data relating to the contributions of nurses at diagnosis are set out in Table There was some consistency both across disorders and sites regarding some contributions, however, there were also some variations. Thus nurse participants reported consistent contributions to providing selfcare support. Approaches to health promotion varied across disease groups and sites in terms of health education in groups, general health promotion (health lifestyles), health promotion to carers and community health promotion. When new events occur The data relating to the contributions of nurses when new events occur or when there is a sudden change in the patient s condition are set out in Table There was some consistency both across disorders and sites regarding some contributions, however, there were also some variations. Providing self-care support was the main focus of health promotion activity with other reported contributions promoting health varying both across the disorders and data collection sites. Queen's Printer and Controller of HMSO

66 On-going care of patients The data relating to the contributions of nurses to the ongoing care of patients are set out in Table There was some consistency both across disorders and sites regarding some contributions, however, there were also some variations with the provision of self-care support as an important focus of activity. Queen's Printer and Controller of HMSO

67 Table The contributions of nurses at diagnosis Health promotion Sub-themes Provides self-care support Data example Self-management information. Written patient information. Discuss self-management. Expert patient and self-care. Expert patient programme. Giving information eg Hypos. Initial dietary advice. Identified MS DM COPD S1 S2 S3 S4 Provides health education in groups General health promotion healthy lifestyle Provides health promotion to carers Community health promotion Getting to Grips course. Newly diagnosed course. Offer DESMOND. Offer DAFNE. Lifestyle advice eg smoking/exercise/diet. Health promotion advice to stop smoking. Life style coach/consultant. Impact on health of other family members eg children of PWMS education programmes. Residential education for families. Public awareness campaign. Identification and register of at risk patients and implementing prevention strategies. Queen's Printer and Controller of HMSO

68 Table When new events occur or when there is a sudden change in the patient s condition Health promotion Sub-themes Data example Identified MS DM COPD S1 S2 S3 S4 Provides self-care support Provides health education in groups General health promotion healthy lifestyle Community health promotion Encourage self-efficacy. Patient is empowered with more knowledge and coping mechanisms. Re-education/development of new skills. Provide advice on what to do when exacerbation occurs. Reinforce self-management and health promotion. Self-management. Educating patients in how to recognise changes in their condition. Promotion of self-care. Expert patient. Encourage patient participation in groups Smoking cessation. Recognition of disease in wider community. Education of general public. Queen's Printer and Controller of HMSO

69 Table On-going care of patients Health promotion Sub-themes Provides self-care support Data example Expert education to patient. Promotion of self-care/expert patient. On-going education of patient. Patient to understand condition and know when to recognise changes and know how to deal with it. Encourage self-management. Identified MS DM COPD S1 S2 S3 S4 Provides health education in groups General health promotion healthy lifestyle Encourage patient participation in groups. Group education. Recognition of disease in wider community. Smoking cessation. Provides health promotion to carers Expert education to their family, carers. Education of family to recognise own need for respite. Ongoing education of family. Queen's Printer and Controller of HMSO

70 3.3.3 Nurse interviews & questionnaires - health promotion The participating nurses rated the strength (mean score and standard deviation, scale 0-100) of their health promoting activity as: 93 (SD13) for secondary prevention; 88 (SD13) for self-care support; 54 (SD34) for primary prevention; and 44 (SD18) for public health initiatives. The only significant difference between the disorder groups was a low level of primary prevention for MS which would be expected. The nurses also rated how frequently they used specific methods of health promotion (see Figure 3.6). Figure 3.6 HEALTH PROMOTION METHODS The data showed that the principle methods of education were one to one and group education supplemented by printed materials. Psychological interventions such as motivational interviewing and CBT were less common reflecting that they need specific skills and training and are not suited to all patients. There were no differences reported between the disorders. Queen's Printer and Controller of HMSO

71 The themes from the nurse interviews relating to health promotion are summarised in Figure 3.7. It was recognised that there was a significant overlap between patient education and self-care support (with the latter being classified as a clinical intervention). Hence, it was very difficult to separate health promoting education from the delivery of clinical care and technology. The key areas of contribution were: advising on and promoting lifestyle change (directly or through others); providing formal and informal education to support patients at different points in the disease trajectory (structured education is emphasised in diabetes); and development of community resources. Queen's Printer and Controller of HMSO

72 Queen's Printer and Controller of HMSO

73 3.3.4 Patient perspectives - health promotion themes The health promotion themes from the open patient questions are detailed below: The one most important thing that the nurse does for you? Seventy patients reported the importance of nurses contribution to health promotion with self-care support (n=33) and information (n=25) being the most common. Only patients with diabetes reported the importance of nurses being involved in lifestyle support (n=7) perhaps indicating the need for patients with diabetes to sustain healthier lifestyles (diet and exercise). Two COPD patients noted the importance of the nurse identifying and promoting risk prevention strategies, largely focusing on smoking cessation. The one thing that you would like the nurse to do more of? Thirty three patients wanted nurses to contribute more to health promotion including providing self-care advice (n=13), lifestyle (n=9) and information support (n=6). Queen's Printer and Controller of HMSO

74 3.4 Clinical care Literature review findings - clinical care Disorder management and symptom alleviation were the most common areas of clinical care (see Figure 3.8). Figure 3.8 Items (%) *intervention areas * disorders Care co-ordinating interventions were common in the diabetes and MS reviews but not COPD; and rehabilitation and palliation were more common in COPD and MS than in diabetes. Unsurprisingly there were no examples of curative intervention and only a very limited number of examples relating to personal care, family care and protection. These variations were consistent with the underlying nature of the disorders where secondary prevention is dominant in diabetes; and rehabilitation and palliation are stronger in COPD and MS where there is a higher level of chronic disability and a prolonged end-stage period. The reviews identified a wide range of different clinical care interventions (see Figure 3.9). Queen's Printer and Controller of HMSO

75 Figure 3.9 Items (%) *intervention types * disorders Self-care advice Many interventions echoed those identified in health promotion and were related primarily to supporting appropriate, effective and safe use of health technologies (see Example 1). Queen's Printer and Controller of HMSO

76 Example 1. Wyre Forest Respiratory Service, Kidderminster Hospital NHS Acute Trust The Wyre Forest Respiratory Service is run by one full time respiratory nurse. The service provides a clinic service, home visits and telephone access for: health and safety, and assessment prior to and after installation of oxygen therapy ongoing oxygen assessment nebulised therapy/inhale therapy breathlessness management nutritional advice exercise emotional support assessment referral to other agencies such as occupational therapy, physiotherapy, housing, and social services. Candy, B. (2005) Evaluating the effectiveness of innovations involving nurses for people in the community with chronic obstructive airways disease. Cochrane Database of Systematic Reviews. Report for the National Coordinating Centre for NHS Service Delivery and Organisation R&D (NCCSDO), London. Onward referral Reflecting the gateway function regarding the assessment involved in referring people to other professionals, services or other types of nurses. Initiate health technology While there were no specific examples of nurse prescribers in any of the reviews, there were examples of nurses working to care protocols to advise GPs regarding drug treatment (see Example 2). Example 2. Nurse-led COPD care The Plymouth community based service comprises regular home visits by nurse specialists to COPD patients to support and educate patients and carers regarding medication, smoking cessation and other health issues with the aim of hospital admission avoidance and maximising of quality of life. Following a detailed patient assessment, the specialist nurses use a detailed protocol to implement standardised care management which includes advising GPs regarding drug treatment prescription or for patient referral to hospital for treatment where necessary. Barnett, M. (2003) A nurse-led community scheme for managing patients with Queen's Printer and Controller of HMSO

77 There was also a very limited account of nurses using or introducing other technologies such as aids and adaptations (see Example 3). Example 3. Helping patients regarding inhaler technique Poor inhaler technique is a recognised problem especially among children and the elderly who find it particularly difficult to coordinate the different actions required for effective drug delivery. Poor technique is associated with reduced therapeutic effect owing to poor drug delivery to the lungs. Good professional practice comprises: regular assessment of inhaler technique; demonstration of good technique; support for the acquisition of the skills necessary; and an understanding of the various devices and how they operate so that the correct device is recommended. Nurses have a major role in promoting good, safe inhaler technique and are the most frequently identified professional for this role. Coakley, A-L. (2001) Helping patients to master correct inhaler techniques: nursing role. British Journal of Nursing. 10 (7): Manage health technology The management of health technology was the most commonly identified type of intervention after self-care advice. A very diverse range of complex technologies were being used across the disorders, for example, in diabetes the intensive support required for insulin; in MS disease modifying therapies; and in COPD inhalers, oxygen therapy and more complex health technologies such as non-invasive ventilation. The nursing contribution was not restricted to helping patients use such technologies but also comprised moderating (adjusting) their dosage and ensuring that the technology was being used efficiently and safely. Specific nursing care Traditional nursing care was the least evident area of intervention, with no examples in diabetes. In the COPD and MS reviews nursing care was more important as patients suffer deficits in activities of daily living. In MS there were examples of practices targeting specific nursing problems such as nutrition, constipation and continence. The relationship between nursing care and other problems was also highlighted with hygiene and pressure area care being important in the management of spasticity. In the COPD review there was a very detailed account of the nursing delivering personal care (bathing and dressing) which illustrated the high level of skill required in performing such care (see Example 4). Queen's Printer and Controller of HMSO

78 Example 4. Undertaking personal care in COPD A study of 12 cases of nurse-patient interaction using participant observation, interviews with nurses and patients, and measurement of perceived breathlessness before and after assisted personal care found that those with severe COPD require complex sensitive care delivery to maximise their comfort and well-being. Skilled nurses use curtailing within a collaborative effort. Skilled care delivery comprises: successful timing, creating a caring atmosphere and the gentle use of instruction and information. Attention to breathlessness, essential curtailing of activity, pauses, skilled communication, and economizing the patient s energy were hallmarks of good practice and was valued by patients. Lomborg, K. & Kirkevold, M. (2005) Curtailing: handling the complexity of body care in people hospitalized with severe COPD. Scandinavian Journal of Caring Sciences. 19 (2): Psychological support Psychological support is central to CDM as patients often have high levels of depression and anxiety and in conditions like MS they may also experience cognitive dysfunction. Psychological support or care is somewhat ubiquitous in nursing accounts of CDM, often with very limited details. Psychological support is poorly defined and ranges from just being in the same physical space as the patient (hand holding or presence) to formal psychological interventions. It is important to distinguish psychological interventions from information giving and education. In the diabetes review psychological interventions were distinguished from educational interventions where there was a therapeutic alliance rather than didactic information giving. Distinctions are more difficult where psycho-educational models are used, with a psychological model being used to underpin an educational initiative (e.g. self-efficacy). Nurses are increasingly using more formal psychological techniques such as: individual and family assessment; counselling; psycho-pharmacological interventions; exercise; relaxation; behaviour modification programmes; cognitive behavioural therapy; and self-efficacy training. While the patient empowerment model is being suggested as an advance on the traditional professional centred approach, there is no clear evidence to support such an approach and it was also noted that nurses often give primacy to physical events or risks over psychological considerations. Case management Case management was not well defined in the material and some aspects of the case management role were implicit rather than explicit. There were also distinctions both within and between the disorders in the way in which Queen's Printer and Controller of HMSO

79 case-management was used. In diabetes care the case-management role was based on a comprehensive care approach (therapy intensification and monitoring) rather than a brokerage model. While in COPD and MS care the case management activity was more fragmented and determined by patient events or advancing disease. Thus in some cases the case management was short term to resolve a problem such as a relapse or a hospital admission; while in others it was longer term with regular review to anticipate and prevent problems. The impact of these different models was not well defined, although the COPD review highlighted some potential benefits (reduced hospital admission and rapid discharge) and the diabetes review highlighted improved patient satisfaction with care. There were also differences in the underpinning responsibilities for case management. In diabetes there are clear drivers setting out the responsibility for long-term co-ordination with practice nurses increasingly expected to lead Type 2 diabetes care (supported episodically by specialist nurses) with specialist nurses remaining in control with Type 1 diabetes care. However, in both MS and COPD care the lines of responsibility, particularly for longer-term coordination, are much less clear. The focus of the service in which the post is located appears to be an important determinant. Posts in an in-patient or specialist centre tend to focus on short-term case management whereas community, rehabilitative and palliative care posts tend to be more orientated to long-term case management. However, it is important to note that there was a high degree of interaction between these different practices. For example, self-care advice was often related to the safe and effective use of health care technology (managing health technology) National participative events - clinical care At diagnosis The data relating to the contributions of nurses at diagnosis are set out in Table There was some consistency both across disorders and sites regarding some contributions, however, there were also some variations with nurse participants reporting consistent contributions to providing disorder and treatment information and providing psychological support (no mention of psychological interventions). When new events occur The data relating to the contributions of nurses when new events occur or when there is a sudden change in the patient s condition are set out in Table There was some consistency both across disorders and sites regarding some contributions, however, there were also some variations with nurse participants reporting consistent contributions which included managing symptoms and complications, technical nursing care, prescribing and supporting carers. However, reported contributions to providing Queen's Printer and Controller of HMSO

80 psychological support and managing the care plan, varied both across the disorders and data collection sites. On-going care of patients The data relating to the contributions of nurses to the ongoing care of patients are set out in Table There was some consistency both across disorders and sites regarding some contributions, however, there were also some variations with consistent contributions to the ongoing care of patients which included managing symptoms and complications, technical nursing care and carer support. Contributions in terms of clinical interventions alongside those to the health care organisation formed the majority of reported contributions. However, reported psychological support varied both across the disorders and data collection sites. Queen's Printer and Controller of HMSO

81 Table Nurses contribution to care at diagnosis Clinical intervention Sub-themes Data example Identified MS DM COPD S1 S2 S3 S4 Disorder & treatment information Management of symptoms & complications Management of technology Technical nursing care Explaining diagnosis at appropriate level. Explain what it means to be diagnosed with COPD. Concordance. Specialist knowledge and skills of disease. Help interpret information. Clarifying misconceptions. Dispelling myths around diabetes. Symptom management. Counselling re. treatment options. Medicine management. Investigating treatments. Technical advice re. inhalers. Optimise medication - especially inhaler technique. Equipment. Start treatment pharmacological; non-pharmacological. Disease modifying therapies. Early treatment to prevent acute admission. Prescribing Prescribe and monitor treatment. Prescribing treatment. Psychological support Give time. Provide support by giving contact details. Reassurance and psychological support. Promote therapeutic health professional relationship. Counselling. Confidence/relationship building. Process of adjustment. Psychosocial advice. Emotional support. Ongoing depending on individual needs. Breaking bad news skilfully. Helping patients deal with feelings. Queen's Printer and Controller of HMSO

82 Management of care plan Advocacy Planning/implementation. Flexibility to adapt care provision to individual needs. Agreed action plan with person with MS. Advocacy relating to work issues, study, housing, treatments, financial & relationships. Carer support Family support. Support to carers. Young carers support. Table When new events occur or when there is a sudden change in the patient s condition Clinical intervention Sub-themes Disorder & treatment information Data example Explanation of why event happened. Informing patient of what is happening. Education. On-going education. Treatment options. Identified MS DM COPD S1 S2 S3 S4 Management of symptoms & complications Management of technology Prevent further occurrences. Rapid resolution of symptoms. Acute intervention. Anxiety and depression management. Adaptive strategies to manage transitional phases of disease progression. Sexual counselling. IV steroids Queen's Printer and Controller of HMSO

83 Technical nursing care Prescribing Psychological support Management of care plan Take action. Record it. Starting insulin. Support during the acute phase recognition of patient s deteriorating condition. Instigate appropriate treatment. Commence palliative care. Change insulin dose. Prescribing quick treatment. Change the prescribed treatment accordingly. Prescribe acute medication. Psychological reassurance. Ability to build trust. Reflection with patient. Reassure patient. Psychological counselling. Time. Emotional support/psycho-social. Revisit management plan. Instigate management plan. Admitting/discharging. Case management. Advocacy Patient advocate. Advocacy when in-patient. Support of carers Informing carer of what is happening. Reassure.. carers. Ongoing education of family. Support of the end stage COPD patient and their family. Telephone helpline. Working with family in preventative care. Table On-going care of patients Clinical intervention Sub-themes Data example Identified MS DM COPD S1 S2 S3 S4 Disorder & treatment information Education and information. Information giving. Queen's Printer and Controller of HMSO

84 Management of symptoms & complications Management of technology Technical nursing care Expert management. Medication review. Administration of medical treatments. Symptom management. DMT advice. Management of disease as it progresses. Application of evidence based care eg O2, medication management of anxiety and depression. On-going management. Clinical decision making and changing treatments in line with current practice. Deep Brain Stimulation. Baclofen pumps. Inhaler technique. Ensuring equipment is appropriate for the patient and working accurately. Palliative care. Working on the wards. Support of end-stage COPD. Instigate appropriate treatment/intervention. Addressing patients immediate needs. Provision of treatment eg dressings, giving insulin. Prescribing Nurse prescribing. Psychological support Management of care plan Advocacy Carer support Counselling. Emotional support. Complex management. Advocacy for vulnerable adults. Patient advocate. Helping patients with self-advocacy. Empowerment of patient. Support family. Support residential and nursing home care. Working with family. Support carers. Queen's Printer and Controller of HMSO

85 3.4.3 Nurse interviews & questionnaires - clinical care The participating nurses rated the strength (mean score and standard deviation, scale 0-100) of their clinical care activity as: 88 (SD16) for onward referrals; 84 (SD16) for self-care behaviour support; 72 (22) for lifestyle interventions and support; 63 (SD18) for case-management; 56 (SD28) for psychosocial interventions; 49 (SD23) for social support interventions; and 33 (SD21) for traditional nursing care activities (i.e. dressing, toileting, eating and mobilising). There were significant differences between the disorder groups with the diabetes nurses rating their contribution to psychological care lower than the MS or COPD nurses. The MS nurses also rated their contribution to casemanagement as greater than the diabetes and COPD nurses (see Figure 3.10). Figure 3.10 DIFFERENCES IN CLINICAL INTERVENTIONS There was also a trend (p=0.06) to suggest that MS nurses (mean 46, SD 29) were more involved in nursing care than COPD (33, 20) or diabetes (mean 27, SD17) nurses. The themes from the nurse interviews relating to clinical interventions are summarised in Figure The key areas of contribution in terms of clinical interventions were: the management of co-morbidities; the management of complications; managing disease progression; management of emergencies; general health care; management of therapy; risk management; the patient therapy interface; medicines management; and psychological therapies. Queen's Printer and Controller of HMSO

86 Figure 3.11 SUMMARY OF CLINICAL INTERVENTION THEMES Queen's Printer and Controller of HMSO

87 Queen's Printer and Controller of HMSO

88 Queen's Printer and Controller of HMSO

89 3.4.4 National participative events clinical care User Views Many reported that diagnosis occurred within the hospital setting and there was limited recall relating to the contributions of nurses at diagnosis with the centrality of the doctor being emphasised rather than a nurse role. Where the nurse was recalled as being present, the emphasis was upon information giving both verbal and written materials. Typical data were: Did not see nurses at diagnosis. Would have helped ; Nothing (11 years ago) apart from urine test (Site 1); None at diagnosis (Site 3); For most patients initially little was done (Site 4); Respiratory nurse at hospital gave most information on medication and dealing with condition. Informed about Breath Easy group best bit of advice given (Site 2); and Advice and help with diet (Site 3). There were more reports of the nurse contributions when new events occur or when there is a sudden change in the patient s condition although some users reported managing through the general practitioner with little reference to nurses. Nonetheless there was recall of contributions to assessment, health promotion, clinical interventions and health care organisation although the data may have represented individual experiences rather than experiences across the discussion group. Examples of data were: In Site 3 nurses were reported as managing access to appointments, medication and equipment: Nurses provide 90% of the work and being Responsive and that the nurse Makes a lot of difference not just (being) a number. Other examples of data were: Specialist nurse will get the ball rolling ; As the front link in the chain they can judge how and where your help should come from (Site 4); The MS nurse listens, can go directly to consultant, is contactable on the phone, is very supportive ; (in hospital) There have been instances of mistakes being made by nurses eg glucose drip to diabetes patient later corrected by another nurse (Site 1); Mobile phone numbers given out to patients ; (the) Immediacy of contact is reassuring ; Develops relationship and trust ; and Not being left in limbo until next consultant appointment (Site 2). A variety of nurse contributions were reported regarding on-going care. Again the data may have represented individual experiences rather than experiences Queen's Printer and Controller of HMSO

90 across the different discussion groups, however, there was remarkable similarity across the different data collection sites. Thus there were reports of contributions to assessment, clinical interventions and health care organisation across all the data collection sites although some users reported little contact with nurses (Site 3). Typical data were: Provides regular check up ; Takes blood pressure ; Support and information ; Give professional advice when necessary ; Changes catheter ; Liaison between doctors and myself (Site 1); For all of us, monitoring is the first start to ongoing treatment. For some it will be by the practise (sic) nurse, for some it is the hospital nurse. Will congratulate or gently chide ; Specialist Nurse will provide ongoing updated education on your condition. Can advise on medication, lifestyle changes etc (Site 4); Asthma nurse makes sure we can use our inhalers correctly ; Keeps us up to date with equipment ; Tells us anything new ; She gives us confidence that we are coping with our condition. Makes us feel things are OK and we are doing alright (Site 3); Annual check-ups at clinic ; Booklets and information ; Contact outside groups that you can become a member of ; If you have a problem they are the first port of call and can give you information on who to contact or get them for you ; Can get in touch with other professionals or GP to get help you may need (Site 2) Users views regarding carers Many users reported that the nurse contribution to carer support at diagnosis was very limited. Typical data were: Nothing ; Did not meet relatives (Site 1); On own as carer ; Hospital nurse (through Breath Easy group) got husband into rehab class that relieved pressure, provides support..reassurance (Site 2). Carers left to flounder (Site 3); Nothing!! ; Little done to identify carers ; Assumption made that other family members will automatically be the patient carer (Site 4); As at diagnosis, many users reported that the nurse contribution to carer support was limited when new events occurred or when there was a sudden change in the patient s condition. Typical data were: Carers are forgotten about (Site 4) and Nothing (Site 1) although also at Site 1 it was reported that the nurse Listens and advices (sic). Contrasting views were also expressed at Site 2: Queen's Printer and Controller of HMSO

91 Hospital wards are not geared up for chronic conditions Family, if you have any, do most of (the) work. If you have no one there s very little left to help us and Explains things with carers and recognise carers role. A more positive view was expressed at Site 3: Nurse will request that wife is present on home visit. Again as at other periods of the disease trajectory, many users reported that the nurse contribution to carer support was limited during the on-going care of the patient. Typical data included: Not applicable (Sites 1 and 3) and 7/8 carers get none (Site 4) while in Site 2 there was differentiation between specialist and practice nurses: Be there for advice (specialist nurse) ; and Practice nurses very little. Some users reported that nurses were: Available for help and advice when needed (Site 1). One user was more positive: Nurse gave peace of mind. Talked through not to panic when X was gasping for breath (Site 3) Patient perspectives - clinical care The clinical intervention themes from the open patient questions are detailed below: The one most important thing that the nurse does for you? A total of two hundred and thirty patients reported the importance of nurses contributing to clinical interventions. Psychological support (n=149) was the most frequently cited important thing that the nurse does for them, followed by medication management (n=23); managing health technology (n=14); technical nursing care (n=11); education and information support (n=9); management of acute events (n=9); management of complications (n=8); and shared decision making (n=7). The one thing that you would like the nurse to do more of? Fifty nine patients reported their wish for nurses to contribute more to clinical interventions which included: psychological support (n=28) (listening to patients, promoting confidence, giving reassurance and problem solving); shared decision making (n=8), patients wanting nurses to be more involved in the discussion of individual care plans, and supporting and facilitating treatment decisions. Other areas included more support with: medicines management (n=5); managing complications (n=5); managing health technologies (n=3); education and information needs (n=3); and management of acute events (n=3). Queen's Printer and Controller of HMSO

92 3.5 Care organisation Literature review findings - care organisation The contribution of nurses to the health care organisation was evident in a number of different facets of care organisation. Workforce development The most evident theme in this facet was the role of specialist nurses in providing education to other health professional and care workers. This education was both formal (teaching sessions) and informal (ad hoc or opportunistic education and information sharing) (see Example 1). These initiatives were being used to improve the quality of care provided and to enable an expansion in care provision (e.g. enabling people with MS to receive their I/V steroids at home). However, there were no accounts of the nursing contribution to workforce at a more strategic level. Example 1. The education of care home staff by diabetes specialist nurses An educational intervention comprising two 2 hour sessions was delivered to 12 staff in a care home. Despite the small sample there was a significant difference in the preand post-intervention knowledge scores both after a week and after 12 months. Additionally changes made to the programme of care of diabetic residents was also maintained at 12 months. Deakin, T.A. & Littley, M.D. (2001) Diabetes care in residential homes: staff training makes a difference. Journal of Human Nutrition and Dietetics. 14: Management of care systems The reviews revealed that the nursing role is an integral component of the care system with the nurse performing a number of key functions: Finding patients (screening and case finding); Assessing patients and admitting/entering them into the care system; Organising and collating patient information; Managing their progress in the care system (process and outcome); Developing management plans; Ensuing regular reviews; Managing crises either unpredicted events or relapses; Discharging patients from the care system; Queen's Printer and Controller of HMSO

93 Triage- controlling and rationing access to services; Referring patients onto other care systems; Monitoring the quality of the care provided; Ensuing that patients understand their role in their own care and what is going on with their care management; Enforcing the care system (implementing guidelines and treatment protocols). The nursing contribution to the management of the care systems operated at both a macro and micro level. At the macro level the nurse contributes to the general organisation of care across the caseload; and at the micro level the nurse contributes to management of the bio-psycho-social needs of the individual patient. Health technology The review contained many accounts of the nurses using a wide range of technology to support their work. The review highlighted some important areas in which technologies are utilised: Managing patient performance both at the individual and group levels. Both computerised and non-computerised information technology is being used to manage and monitor patient performance. These systems are largely based on defined protocols that collate patient data to give individual and group level summaries of risk (clinical factors), service use or progress (e.g. eye screening uptake), and follow-up priority (targets and appointments). Systems to measure care performance. Information systems are being used to assess the quality of the care provided at the level of the individual practitioner, the care team and the overall service. Such systems are also being used to determine financial rewards particularly in primary care as with the new Quality and Outcomes Framework (QOF). Patient centred technology. One of the key foci in current CDM has been patient involvement. Only one specific example of a patient centred technology (the patient-held record in the diabetes review) was identified. Therefore, the extent to which self-monitoring technologies are being used to support patient participation is unclear. Interface technologies. It was evident that nurses are increasingly using a variety of technologies to interact with patients (telephone, , text messaging). Regular communication is a central facet of CDM and these technologies are being used to enable more flexible and extensive Queen's Printer and Controller of HMSO

94 communication with patients. Such technologies mean that patients no longer need to attend a specific location to have contact with the nurse. An interface technology common to all three reviews was the telephone. However, the way in which the telephone is utilised varies. This variation can be mapped along two intersecting continua regarding the level of structure and interaction in the telephone (or any electronic) communication. See Figure Figure 3.12 THE TELEPHONE CONSULTATION AS A NURSING INTERVENTION. Structured Clinical data inputting follow- up - education Organised counselling follow-up Didactic Interacti v Prescriptive advice from SN Responsive discussion with a specialist nurse. Unstructured Telephone use can be didactic and structured (nurse in central monitoring role detects changes and contacts patient to advise them to increase medication) or interactive and unstructured (nurse contacts for general assessment) (Madonna & Keating 1999, Kim & Oh 2003, Stuifbergen 2003, Alonso 2004, Burgess 2005, Kim et al. 2005, Wong et al 2005). The use of the more structured approaches was found in the diabetes review where the disease parameters are more modifiable. In contrast unstructured responsive communication was the dominate mode of telephone interaction in the MS review, although there were examples of the telephone being used to deliver specific psychological interventions (counselling and self-efficacy follow-up). This unstructured approach is suited to MS because the disease parameters are more complex. The MS review also contained an example of how the telephone was being used to respond quickly to patients who might be experiencing a relapse and was a means of counselling and organising treatment if required. The dual benefits of such an approach were in attending immediately to the patient s anxiety and in organising a swift intervention if appropriate. Some of the most sophisticated Queen's Printer and Controller of HMSO

95 examples of technology use were found in the COPD review which included the use of tele-enabled equipment to monitor the patient s blood pressure, oxygen saturation, temperature, pulse and breathing delivering data back to a central monitoring point manned by nurses. Health promoting systems The key health promoting functions identified were: Developing and managing case-finding and screening services. Using screening tests to identify those at risk of problems and then provide preventive advice (smoking and obesity). Organising (recruiting patients, resourcing, planning and running) health education programmes. Developing and distributing health education materials and information resources. Involving patients in the development of information and health education provision. Cross-boundary working The reviews contained many examples illustrating how nurses contributed to cross-boundary working: Nurse/doctor interface. The reviews contained a number of examples of how doctors and nurses worked together. While there were a few examples of nurses providing elements of doctor substitution, full substitution was uncommon. The examples related to integrating work to avoid duplication and improve administration rather than a role swap. In the MS review while there were examples of nurses taking on medical roles, the driver was not only the shortage of doctors but also to change the way in which care was delivered with the patient rather than the system at the centre of the care process. Matheson and Porter (2006) in their account of a nurse-led relapse service described it as a patient-led, responsive service that challenged the medical model delivery p184. Primary/secondary care interface. Nurses were involved in many schemes integrating primary and secondary care. These schemes involved: hospital out-reach (specialist nurses supporting patients in the community); community in-reach (community nurses enabling patients to be discharged from hospitals more rapidly); and the transference of expertise with specialist nurses supporting generic practitioners in primary care (see Example 2). Queen's Printer and Controller of HMSO

96 Example 2. Inter-professional (nurse-physiotherapist) and cross-boundary (primary/secondary care) working The Colchester COPD team leadership comprises full time H Grade nurse and physiotherapist posts which are filled by two job sharers who bring their skills from practice nursing and hospital respiratory care to the roles. Their combined skills have enabled better continuity of care for patients through early supported discharge and post-discharge follow-up across the PCT. The team now employs 4.2 WTE nurses which delivers care during office hours. The Colchester PCT re-admission rate is 5% in contrast to the national figure of 27%. Smy, J. (2004) Exchanging expertise in COPD care. Nursing Times.100 (37) Nurse/therapist interface. The COPD review contained examples of nurses working with therapists (OTs and physiotherapists). The relationship between these therapists varied with either the nurse leading a service with some therapy input or the therapist prescribing an intervention for nurses to deliver. Nurse/nurse interface. All the reviews highlighted that intra-nursing communication is an important part of cross-boundary working. This reflects the increasing range of nurse specialisations within care management and the general complexity of CDM so that within and between care episodes nurses are needed to integrate and/or instigate the care of other nurses. This may reflect the complexity of a particular problem (e.g. a referral to a continence nurse), a lack of clinical expertise (e.g. practice nurse takes advice from a diabetes nurse) or the patient s changing needs (specialist nurses refers patient on to a palliative care nurse). Additionally cross-boundary working occurs at the interface with social services, formal carers and continuing care settings although this was not well represented in the literature. Care environment The care environment in CDM is diffuse with much of the care performed by the patient themselves. The nursing role is therefore to ensure that the patient has the appropriate information, resources and equipment to enable this care. The environment can also be defined in terms of the care system and is therefore both real and virtual (ensuring that information is exchanged, appointments are made and patients are followed up). Other important facets of the nursing contribution to the care environment were to: ensure patient safety (medicines management, infection control); and maintain equipment (efficacy and safety). Queen's Printer and Controller of HMSO

97 User involvement There were examples of nurses involving users in their care which can be categorised into the following themes: Facilitating the use of empowerment models of communication; Equipping patients with self-care skills that they need to manage and adjust to life with disease; Involvement of patients in service organisation and planning. Improved access to services Access to an appropriate care system is vital in effective CDM. Nurses contributed to improving patient access by: Developing specific services to facilitate access for particular patient groups (e.g. older people, minority ethnic etc); Active case finding of patients (see Example 3); Improved management processes to ensure rapid and timely access to services. Example 3. Nurse-led clinic to improve access A nurse-led multi-disciplinary clinic was set up to provide access to specialist MS care management for those who had not had contact with a specialist neurologist for many years. After an appointment a MDT care plan is agreed with a MS specialist home visit for complex cases. Referrals come via various sources. After 18 months an additional 80 people with MS from the local population have been identified and can now locate their support services. Patient satisfaction with the clinic is high; 77% reported the clinic to be of great benefit to them, 30% were pleased to have seen a specialist neurologist and 30% pleased that they could see the whole MDT during a single visit. D Arcy, C. (2005) Managing multiple sclerosis: working in partnership. Nursing Management. 12 (6): Continuity None of the reviews identified items that explicitly examined the impact of nurses on continuity, although there were items that described implicit and explicit practices by nurses which contributed to some of the different dimensions of continuity (see Table 3.5.1). Queen's Printer and Controller of HMSO

98 Table Continuity examples *disorder Continuity Dimension Diabetes MS COPD Experienced continuity- Patient more satisfied with nurse-led and co-ordinated care Patient felt satisfied with nurse-led and co-ordinated care Inconsistencies in care and professional advise Continuity of information- Nurses contribute through: patient-held records; computerised data management systems; and interface technologytelephone MS nurses were very active in providing consistent information for patients Discharge planning and information sharing Crossboundary and team continuity Examples of nurses working across and between services to help integrate care Depends on the number of professionals and services available Much movement across boundaries (acute to primary care) Flexible continuity Nurse acting as a lubricant in the care system by taking on multiple roles No examples No examples Longitudinal continuity Nurse-led care means that patient has care co-ordinated by one person through time. Once specialist nurse has made contact it is usually maintained Fractures in longitudinal care some discharge some continue Relational or personal continuity Patients feel that they can have a more expansive discussions with nurses Depth of relationship influenced by number of patients Building up trust with the patient important in reducing anxiety There are clearly similarities and differences between the disorders, however, while nurses can contribute to all the dimensions of continuity that contribution is determined by the underpinning care structure, the level of the nursing resource (against the demand) and the availability of services. Evidence based care The function of nurses in supporting evidence-based care was only identified in the diabetes review, with the key exemplars being: The adoption of evidence-based guidelines. Transferring evidence to patients and other professionals through case support, education and role modelling. Queen's Printer and Controller of HMSO

99 It was noted, however, that the evidence-based practices were not derived from nursing knowledge but from medically constructed models drawing on data from large clinical trials. This highlights the relationship between the nurse and the care system and suggests a role limited to the technology and technologist models (1 and 2) National participative events - care organisation At diagnosis The data relating to the contributions of nurses at diagnosis are set out in Table There was some consistency both across disorders and sites regarding contributions to enabling health care access and wide variations in other reported contributions to the health care organisation. When new events occur The data relating to the contributions of nurses when new events occur or when there is a sudden change in the patient s condition are set out in Table The nurse participants reported consistent contributions when new events occur or when there is a sudden change in the patient s condition which included promoting health care access, promoting a high quality care experience, managing the care system and cross-boundary working. However, reported contributions to service and workforce development varied both across the disorders and data collection sites. On-going care of patients The data relating to the contributions of nurses to the ongoing care of patients are set out in Table The nurse participants reported consistent contributions to the ongoing care of patients which included managing the care system, cross-boundary working, service and workforce development. Contributions in terms of the health care organisation alongside clinical interventions formed the majority of reported contributions. However, user involvement and research involvement varied both across the disorders and data collection sites. Queen's Printer and Controller of HMSO

100 Table Nurses contribution to care at diagnosis Health care organisation Sub-themes Access Data example Explanation of the role of the nurse and what they can offer. Offering an accessible, timely, responsive, seamless service. Nurse-led clinics. Contact point/point of safety/security. Telephone support point of contact. Obesity clinics. Provision of named person. Identified MS DM COPD S1 S2 S3 S4 User involvement & choice Promoting joint decision making Care experience (quality) Management of care system Providing continuity of care acute to community interface. Followup individualised to patient need. NSF and NICE. Challenging traditional practice and using evidence based practice. Maintain register of diabetics. Cross-boundary working Communication to MDT. Consultancy for GPs/other MDTs. Integrated care with social services. Service development Standardising diagnosis and treatment. Cost-saving nurse can do jobs of several people (phlebotomist, dietician, GP) Queen's Printer and Controller of HMSO

101 Workforce development Professional network UKMSSNA. Education and training. Training other HCPs to diagnose correctly. Research Trials Table When new events occur or when there is a sudden change in the patient s condition Health care organisation Sub-themes Access Data example Expertise in clinical skills. Ensure easy access to the service. Rapid access clinics nurse-led. Knowing who to contact in the case of new events. Visit patient rapidly/bring to out-patients. Rapid access. Telephone advice. Less waiting time. 1 st point of contact. Identified MS DM COPD S1 S2 S3 S4 User involvement & choice Joint decision making with patient. Provide individualised care. Care experience (quality) Management of care system Continuity. Co-ordinated care. Prevent admission from home. Prevent hospital admission if appropriate. Facilitate early discharge where appropriate. Use of evidence based knowledge. Audit. Provide evidence based care. Facilitation of appropriate intervention, Pathway protocol development. Queen's Printer and Controller of HMSO

102 Cross-boundary working Service development Workforce development Nurse is hub of the MDT. Communication with other health professionals/agencies. Communication with primary care. Coordinate care so other members of MDT are mobilised. Social Services assessments - advise on packages of care. Multi-agency working. Cross-boundary working. Inter-agency working. Save costs eg early insulin initiation in GP practice rather than referral to hospital. Highlight gaps in the service. Influence future Quality Outcomes Frameworks. Process mapping. Education of other health care workers. Working with pharmaceutical companies to enhance educational opportunities. Educating prescribers. Educating other health/social professionals. Research Sound qualitative research on COPD care. Table On-going care of patients Health care organisation Sub-themes Access User involvement & choice Data example Developing one stop shops. Nurse-led clinics. Instant access to all disciplines. Telephone helpline for patients/relatives. Home visit. OPD. Phone support. One stop shop. Source of contact/named nurse. Quick access for crisis management. Individual care. Adopt service needs specific to the patient. Provide individualised care. Flexibility of nurses [provides choice for patients. Identified MS DM COPD S1 S2 S3 S4 Queen's Printer and Controller of HMSO

103 Care experience (quality) Management of care system Cross-boundary working Service development Workforce development Research Moving appropriate care from secondary to primary care. Continuity of access. Consistency of care provider. Patient held records promotes continuity of care. Role in commissioning. Care management. Appropriate banding for service provision. Complex case management; liaison with community matron. Case manager. Management. Local guidelines. Application of evidence based care. Caseload lead. Involvement in guidelines/protocols/policy. Disseminate best practice. Audits. Monitor how pharmaceutical reps give incentives for prescribing practice. Joint care planning. Developing protocols. Reports to panels/continuing care/dla. Working across boundaries. Influencing medical staff to move from medical to social model. Consultant for wider care providers. Cross-boundary working. Support for residential and nursing home care. Inter-agency working. Working with MDT. Bridge gap between 1º, 2 º and tertiary care. Act as a resource/central point for others eg GPs. Multi-disciplinary clinic. Social services assessments advise on packages of care. Sampler of service delivery. Development of health care policy. Designing new models of care embracing technology. Championing service. Care pathway for dying. Identify gaps in service. Raise profile of COPD patients at service design level. Redesign service. Process mapping. Service improvement. Expert education to PAMs/social care employers. Education of care homes. Professional development. Education and information for HCP. Educating other health/social professionals. Increase awareness that services are also available for COPD. Working with pharmaceutical companies to enhance educational opportunities. Role as researcher. Clinical trials. Sound qualitative research on COPD care. Research. Queen's Printer and Controller of HMSO

104 Enablers/inhibitors to nurse role delivery The nurse participants identified a number of enablers and inhibitors of their roles many of which reflected those reported in the literature review. Thus presence of good management, sufficient staffing for the service, adequate clerical support, a work environment with good IT and office facilities, opportunities to access education and development opportunities, a supportive and well functioning multi-disciplinary team together with clear agreed roles and guidelines were identified as enablers but their absence were also inhibitors. Additionally personal attributes were identified as enablers to role delivery and included expert knowledge, leadership skills, personal motivation and drive. Additional inhibitors identified were related to the wider health care policies with particular reference to service targets, continual changes and concern about job security and the lack of other services with their absence yielding an increased workload for the health services. A personal attribute identified as an inhibitor was a fear of change and its impact upon the ability to be flexible (see Appendix 11) National participative events - changes to nursing roles Possible changes to nurse role Both the nurse and user participants were asked about possible changes to the nurse role. The nurse participants were universal in their identification of nonnursing administrative work as work which could be undertaken by others. Additionally, the time consuming nature of letter writing, referrals and telephoning were areas of concern. A range of other work was identified as having potential to be undertaken by others and included: management data collection for audit and financial purposes (Sites 1, 2, 3); stock control (Sites 1, 2, 4) and clinical activities relating to routine patient reviews (eg venepucture, weighing patients, urine testing, 24 hour blood pressure measurement, lung function tests etc) (Sites 1, 2, 3, 4). The nurse participants also provided extensive lists of what should be retained within the nurse role if there were to be changes. The lists echoed many of the activities identified in the earlier discussions relating to nurse contributions at different points of the disease trajectories, however, the common themes related to advanced and specialist practice nursing roles and adequate patient contact time to enable high quality care. Service user views The users generally viewed everything as important and necessary especially time for listening to patients although Site 2 identified that nurses could give up: Weight, height measurements, blood pressure, paperwork, admin to other staff. Indeed, Sites 2, 3 and 4 users identified that pharmacist support and health care assistants could contribute to health care delivery while Site 1 users identified Auxilliary and admin (sic) staff as potential contributors to health Queen's Printer and Controller of HMSO

105 care delivery. Users at all data collection sites expressed the desire for greater access to nurses which included: Time set aside to talk to patients. Also for nurses to talk to patients relatives (Site 1); Having time to talk and spend time with patients/carers (Site 2); Greater access to nurse so that Dr is not bothered unless needed (Site 3); Nursing staff to take responsibility for all patients either in hospital or the community on a rotation basis within the specialism to allow them to know the patients in order to cover leave, sickness (Site 4). A common theme was a desire for more nurses across all sites which was summed up in Site 4: There should be no reduction in specialist nurses or general nurses. There should be more nurses to provide a Gold Standard in every health care institution However, there was some anxiety expressed about the use of unqualified staff: An unqualified person who refers you to another is more frightening than a nurse saying the same thing (Site 3). While some users expressed the desire for a return to earlier images of nursing: Bring back Matrons discipline and cleanliness (Site 2); and Would like nurses to wear uniforms because it differentiates them Do not like plastic aprons (Site 3), there was a common view that: Nurses play an important role caring for patients (Site 1) National postal survey - care organisation Nursing contribution to health care delivery Nurses across all health care organisations reported minimal (33.1%, n=97), major (32.1%, n=94) and nurse-led (29.0%, n=85) contributions in the disorder-specific diagnosis service. The differences between organisation types were not statistically significant (p=0.213). Major (35.4%, n=104) or nurse-led (46.9%, n=138) contributions were most frequently reported regarding initial treatment delivery with no significant differences between organisation type (p=0.338). Respondents from health care organisations reported major (31.1%, n= 91) and nurse-led (64.8%, n=190) contributions to long-term treatment. Major (43.2%, n=127) and nurse-led (42.5%, n=125) contributions to the management of complications were reported across organisation types (p=0.947) and similarly major (37.4%, n=108) and nurse-led (44.3%, n=128) contributions to advanced disease care were reported across health care organisations (p=0.135). Queen's Printer and Controller of HMSO

106 Table Nursing contribution to health care delivery SERVICE HCO None Minimal Major Nurse-led Total % n % n % n % n n Diagnosis PCT TT AHT Total Initial treatment PCT TT AHT Total Long-term treatment PCT TT AHT Total Management of complications PCT TT AHT Total Advanced disease care PCT TT AHT Total Key: HCO Health care organisation PCT Primary health care organisation TT Teaching hospital AHT - Acute hospital % within each HCO Queen's Printer and Controller of HMSO

107 Nursing positions Nurse consultant positions were reported in PCTs (6.2%, n=4), acute hospital Trusts (AHT) (15.3%, n=12) and teaching Trusts (TT) (7.0%, n=12) (p=0.108). See Table Nurse specialists focusing on the disorder were widely reported (PCTs 80.0%, n=52; TT 93.2%, n=55; AHT 85.5%, n=147) (p=0.106). The range of nurse specialists present (n= 0-10) with mean of 2.343, SD was calculated from 209 responses [number of incorrect responses (indicated existence of nurse specialist but no numbers disclosed =87)]. Palliative care nurses were reported as focusing on the tracer disorders within the organisations (PCT 15.4%, n=10; TT 10.2%, n=6; AHT 5.2%, n=9) range 0-4, mean = 0). Two responses reported four palliative care nurses focusing on a disorder, both were in DM care at a PCT (n=285/296). Just over a third of respondents (35.5%, n=105) reported community nurses focusing on the tracer disorders (PHCO 27.7%, n= 18; TH 45.8%, n= 27; AH 34.9%, n=60). The maximum number reported (n=1) was 21 community nurses focusing on the disorder within DM care at a PCT. Range = 0-21, mean = 0.699, SD (261/296). A minority of respondents (14.5%, n=43) indicated senior nurses to be focusing on the tracer disorders throughout each type of health care organisation (PCT 13.8%, n=9; TT 16.9%, n=10; AHT 14.0%, n=24). Junior nurses were infrequently reported to be focusing on one of the tracer disorders within PCT (3.1%, n=2), TT (3.4%, n= 2) and AHT (7.0%, n=12). The majority of reported community matrons were located within PCTs (PCT 30.8%, n=20; TT 16.9%, n= 10; AHT 14.5%, n=25; p=0.015). Respondents from all organisations reported that generic nurses contributed in some way to disorder care (PCT 20.0%, n=13l; TT 37.3%, n=22; AHT 25.9%, n=45). Overall 52.3% (n= 34) PCT respondents reported generic specialists, such as district nurses, as contributing to disorder care in some way. Acute Hospital Trusts respondents reported a disorder-specific specialist contributing in some way (17.2%, n= 30) which may be partly due to the difference in titles of specialist nurses for those within COPD care (i.e. respiratory nurse specialist title rather than COPD nurse specialist). Queen's Printer and Controller of HMSO

108 Table Nursing positions focusing on tracer disorder HCO Nurse consultant Nurse specialist Palliative care nurse Community nurse Senior nurse Junior nurse Community matron % n % n % n % n % n % n % n PCT TT AHT Total Key: HCO Health care organisation PCT Primary Care Trust TT Teaching Trust AHT Acute Hospital Trust % within each HCO Queen's Printer and Controller of HMSO

109 Strategic plans Strategic plans for nursing were reported by 43.3% (n=125) of respondents overall. No statistically significant differences were found between health care organisations (TT 51.7%, n=30; PCT 48.3%, n=29; AHT 38.6%, n=66). (p=0.147). Many of the examples given involved descriptions of enhanced working between primary and secondary care. Nursing care pathway/algorithm Nearly half of the sample (46.3%, n=137) reported the existence of a specific nursing care pathway or algorithm for their tracer disorder (PCT 49.2%, n=32; TT 41.4%, n=24; AHT 46.8%, n=81). They had been in place from one month to 20 years, with TT more frequently reporting a longer duration (TT mode = months). Examples of care pathways were wide ranging and included: TT (MS): relapse, disease-modifying therapy, fatigue, pain, spasticity, continence/bladder; TT (DM): pregnancy care, emergency admissions, diabetic ketoacidosis; AHT (COPD) care pathway across primary and secondary care; exacerbation treatment/management/self-management plans; PCT (MS): initiating disease-modifying therapy; spasticity; depression care. Nearly half of the sample (46.9%, n=137) reported a multi-disciplinary care protocol/algorithm involving nurses. TT reported such protocols or algorithms with 39.7% (n=23) of respondents indicating the presence of a multidisciplinary protocol delivered in part by nurses (PCT 46.9%, n=30; AHT 49.4%, n=84). Nurse prescribers Between one and 5+ prescribers were reported within each health care organisations (overall 51.8%, n=150). See Table Prescribers were located within AHT (n=1, 32.6%; n=2, 3 or 4, 18.0%; n=5+, 2.9%), PCT (n=1, 22.0%; n=2, 3 or 4, 18.6%; n=5+, 15.3%) and TT (n=1, 10.2%; n=2, 3 or 4, 27.1%; n=5+, 5.1%) (p=0.001). One respondent reported 50 prescribers contributing to COPD care in a PCT. MS nurse respondents most frequently reported no prescribers present in the nursing service (68.5%, n=50) with DM respondents frequently reporting multiple prescribers in each health care organisations ( %, n=32; %, n=11). Results are set out in Table Queen's Printer and Controller of HMSO

110 Table Numbers of prescribers by health care organisation Prescriber numbers Unknown 0 1 2, 3, or 4 5+ Total HCO PCT Count Teaching Trust % within PCT Count 16.9% 27.1% 22.0% 18.6% 15.3% 100.0% % within TT 5.1% 52.5% 10.2% 27.1% 5.1% 100.0% Acute Hospital Trust Count % within AHT % 44.2% 32.6% 18.0% 2.9% 100.0% Total Count % of Total 5.9% 42.4% 25.9% 20.0% 5.9% 100.0% Measurement and maintenance of nursing quality Respondents from all health care organisations and all tracer disorders combined reported clinical audit (72.5%, n=216) and patient surveys (60.4%, n=180) as the most frequent means of measuring quality of nursing care. There was a statistically significant difference (p=0.012) between health care organisations regarding the monitoring of patient outcomes against desired norms, with 56.9% PCT (n= 37) suggesting this was undertaken compared to 40.7% TT (n=24) and 35.6% AHT (n=62). A statistically significant difference was also found with the measurement of the quality of nursing care by patient surveys, with PCT more likely to report undertaking these (PCT 73.8%, n=48) than TT or AHT (TT 59.3%, n=35; AHT 55.7%, n=97; p=0.038). Respondents from all health care organisations reported common strategies for actively maintaining the quality of nursing: Regular clinical supervision (53.7%, n=160); team development (78.2%, n=233) and clinical skills training (78.9%, n=235). Disorder-specific competency frameworks were less frequently reported by respondents as a method of maintaining quality (PCT 15.4%, n=10; TT 18.6%, n=11; AHT 13.2%, n=23). Statistically significant differences were found between health care organisations for clinical skills training with respondents from PCT more Queen's Printer and Controller of HMSO

111 frequently reporting this method of maintaining the quality of nursing (PCT 93.8%, n=61; TT 83.1%, n=49; AHT 74.1%, n=125; p=0.001). Nursing initiatives Over three quarters of respondents (78.5%, n= 234) reported that recent nursing innovations or initiatives had occurred within their health care organisation or local geographical area (PCT 83.1%, n=54; TT 86.4%, n=51; AHT 74.1%, n=129; p=0.083). Some examples are set out in Table Table Examples of reported nursing initiatives or innovations PCT DM Re-development of Type 2 DM education programmes. Start of DAFNE (Dose Adjustment For Normal Eating)-style programme for Type 1 DM patients. 3-month on group sessions after insulin started MS Nurse-led clinics Support groups, education programmes, etc. COPD In the early stages of developing self-management with telemedicine TT DM Hypobox & education NHS innovations award-winning idea for treatment of in-patient hypos MS Development of a care plan for people commencing diseasemodifying therapies. Development of protocol for relapsing patients and use of steroids COPD COPD action plans Case review team Admission avoidance AHT DM Multiprofessional adolescent service Acupuncture clinic Perioperative clinics Nurse-led smoking cessation clinics MS Rapid access relapse clinic run by MS nurse and GP with special interest in MS COPD Development of rapid response COPD service which is a nurseled service. The aim is for same day or early discharge for patients who have been admitted exacerbation of COPD. Assessment & decision re: discharge is undertaken by the Respiratory Nurse Specialists Key: PCT Primary Care Trust TT Teaching Trust AHT Acute Hospital Trust DM Diabetes mellitus MS Multiple sclerosis COPD Chronic obstructive pulmonary disease Queen's Printer and Controller of HMSO

112 Cross-boundary working The data were combined from the national participative events and the national survey. The nurse participants at the participative events were asked to list up to 10 examples of cross-boundary working involving nurses within their table top discussion groups and respondents to the questionnaire were asked to identify up to five examples of cross-boundary working involving nurses. The data were subject to content analysis and classification along a continuum of cross-boundary working to explore its nature and extent within current health service provision (While et al, 2006). The following definitions were used: intraprofessional (nurses working across and between these disciplines), interprofessional (nurses working with other professionals), intra-organizational (nurses working across different components of the health service), interagency (nurses working across and between different agencies) and transdisciplinary (nurses working within integrated services involving different agencies). Two researchers (AW & BC) coded the data independently and any disagreements were reviewed and the data recoded. A large range of cross-boundary working activity (n= 805 responses) was reported. The extent of reported intra-professional (inter-disciplinary nurse to nurse), inter-professional (nurse to other health care professional), intraorganisational (across parts of the health service) and inter-agency working varied both across disorder care group and health care organisational type (Tables 3.5.9, & ). The survey data were echoed in the stakeholder conference data providing a validity check. There were only two examples of trans-disciplinary working. Examples of cross-boundary working included both patient (eg referral, discharge planning, multi-disciplinary clinics) and organisational focused activities (eg clinical protocol development, clinical networking) in addition to generic activities such as team-working. Queen's Printer and Controller of HMSO

113 Table Cross-boundary working Queen's Printer and Controller of HMSO

114 Table Summary of categories by participative events and survey data Queen's Printer and Controller of HMSO

115 Table Cross-boundary working by type of health care organisation (HCO type not collected from participative events attendees) NB. Multiple response therefore numbers may exceed totals in each category Queen's Printer and Controller of HMSO

116 3.5.5 Nurse interviews & questionnaires - care organisation The participating nurses rated the strength (mean score and standard deviation from scale 0-100) of their contribution to the health care organisation as: 78 (SD22) for maintaining a safe care environment; 77 (SD18) for providing an educational resource; 71 (SD16) for cross-boundary working; 67 (SD21) for quality assurance; 61 (25) for caseload management; 55 (SD30) for patient participation initiatives; and 48 (SD23) for workforce development. There were no differences between disorder groups. The themes from the nurse interviews relating to health care organisation are summarised in Figure 3.7. The key areas of contribution in relation to the health care organisation were: facilitating access to services; continuity (information, team, relational and longitudinal); cross-boundary working (intra-professional; inter-professional; inter-organisational; inter-agency; and trans-disciplinary); information systems; tele-care (telephone, internet and ); and management of the care system. Queen's Printer and Controller of HMSO

117 Figure 3.13 SUMMARY OF HEALTHCARE ORGANISATION THEMES Queen's Printer and Controller of HMSO

118 Queen's Printer and Controller of HMSO

119 Overall pattern of care To establish the overall pattern of the different elements of contribution, the nurses identified the proportion of the time that they spent on health promotion, assessment, clinical care and the organisation of care (see table Overall clinical assessment was the largest element of contribution, closely followed by clinical care. Health promotion was also a significant component of activity. The smallest reported component was related to the health care organisation. Table Proportion % of activity *site Site Health promotion Assessment Clinical care Health care organisation Diabetes MS COPD Overall Patient perspectives - care organisation themes The clinical organisation themes from the open patient questions are detailed below: The one most important thing that the nurse does for you? Over one hundred comments related to health care organisation (n=127).the majority of these patients (n=70) thought improving access to nurses was the most important thing that the nurse does for them, followed by: management of their care (n= 26); support with technology (n=18); co-ordinating between professionals (n=7); and continuity of information (n=3). The one thing that you would like the nurse to do more of? Patients identified a wide range of issues that they thought nurses could do more of including: improving patients access to nurses (n=55); increasing nurse disease knowledge; better support with health technology (n=9); developing the wider workforce (n=6); interpersonal skills development (n=5); and improvements to services (n=4). Queen's Printer and Controller of HMSO

120 What one thing would you like nurse to do less of? The majority of patients who responded to this question specified themes which emphasised health care organisation and workforce issues rather then specific nursing activities. However, over half of patients responses (n=26) emphasised the need for nurses to develop their interpersonal skills, including their communication and listening skills. Eleven patients (n=11) remarked on care system failures such as volume of nurse administration and delays with appointments and treatments. Three patients (n=3) commented that nurses needed to develop their knowledge about treatments and available services. Other comments included: ensuring that nurses were more proactive and less reactive in facilitating patients care (n=2); nurse appointment times were short and nurses were not readily available (n=2); and finally, one patient (n=1) who thought that nurses stood, behind policy barriers (Patient with diabetes). 3.6 Service Development Service development was identified as an important element in the nursing contribution both in the literature review and the nurse interviews Service development - literature review The reviews identified many examples of services which had been established or developed by nurses, particularly specialist nurses. These developments were often undertaken following an audit or need analysis highlighting systems failures or lack of provision. The examples included: Work-force development (particularly education of other professionals). Providing more flexible services. Creating new clinics to meet particular needs. Therapy innovations (particularly education and psychological) Setting up patient groups Developing information resources. Developing interfaces between services Improving access to services; Setting-up patient databases; Monitoring service quality; Developing new care systems; Developing patient support systems to target the needs of particular populations; Creating innovative communication methods; Raising general awareness about the needs of the disorder. Queen's Printer and Controller of HMSO

121 3.6.2 Service development - nurse interviews The participating nurse gave multiple examples of service development across the following areas: Development of community support groups and networks Development of lifestyle and self-care groups (e.g. weight-loss and fatigue management groups). Specialist input into the development of new services (e.g. new clinics). Supporting transitional infrastructure (e.g. transition from primary to secondary care). Developing guidelines & protocols (e.g. writing hyperglycaemia management guidelines). Research and audit activity. Developing cross-boundary structures (e.g. building links to social care into the CDM). Acquiring funding from external sources in order to develop areas of current provision. Developing and supporting user involvement groups and consultation events. Workforce and team development was the final area of nurses actual contribution to service change. Nurses contributed to both intra and inter professional knowledge development via courses, programmes and education days in order to improve CDM knowledge. This education was performed both at a formal and informal level. See Figure 3.14 for a summary of service development themes. Queen's Printer and Controller of HMSO

122 Figure 3.14 SUMMARY OF SERVICE DEVELOPMENT THEMES Queen's Printer and Controller of HMSO

123 3.7 Impact of the nursing contribution to care Literature review findings - impact of contribution The review identified some evidence showing the impact of nursing on care structures, processes, outcomes and cost. Care structures Overall there were few empirically based examples detailing the effect of nurses on service structures (see Table 3.7.1). Table Role effects on structure*evidence Effect Positive Neutral Negative Str. Med. Weak Str. Med. Weak Str. Med. Weak STRUCTURE Cross-boundary working Educating professionals Education nonprofessional carers Access & service use Developing care system Strength of evidence: Str.=strong; Med= medium; and Weak. The most common effect of nurses was in improving access to services, particularly for vulnerable or difficult to reach groups. The nursing role can be positioned to alter the focus of care-giving thereby providing flexibility regarding the place and time of care. There were fewer studies that directly explored the impact of nurses on cross-boundary working or in educating other Queen's Printer and Controller of HMSO

124 members of the workforce. One study in the COPD review highlighted a potentially negative effect of nurses on cross-boundary working by increasing the workload of doctors by identifying more problems (Laurant et al 2004). The structural effects identified were similar for each of the disorders. While there was a very poor yield of structural material in the COPD review, there were many examples from the survey component of the previous Candy et al (2005) systematic review of the centrality of nursing to service structure. The impact of nurses on service structures is well illustrated by an example from the diabetes literature in which the nursing role was used to bridge two services completely altering the care system (see Example 1). Example 1. Cross-boundary and service development A diabetes specialist nurse (DSN) based in secondary care worked alongside the ophthalmic team offering a diabetic eye screening clinic. She reviewed all referrals and undertook a clinical assessment comprising a detailed patient interview and clinical measurement (blood pressure, HbA1c, and cholesterol). The study found that a significant proportion of the patients had sub-optimal treatment. The DSN improved communication between primary and secondary care and highlighted treatment needs to general practitioners. The patient interviews provided patient education and reinforced good self-management practices. Southgate, D. & Clark, J. (2003) Impact of having a DSN working in the diabetic eye screening clinic. Journal of Diabetes Nursing. 7(2): Care processes The different process areas identified in the three reviews were grouped thematically under the following headings: care experience; continuous support; event support; information support; and assessment (see Table 3.7.2). Queen's Printer and Controller of HMSO

125 The strongest and most consistent (across disorders) impact was on patient behaviour, particularly self-care behaviours. This theme included impacts on psychological process such as perceived self-efficacy and ability to cope with the disorder. The impact on quality-of-life was inconsistent. While nurses showed positive effects on disease specific quality-of-life measures, studies reported consistently little or no impact on general quality of life. This may be a phenomenon of the nature of these measures (a lack of sensitivity and specificity) and/or related to the overriding effect of the disease on the patient s assessment of their quality-of-life. Overall the data suggested a generally positive impact on physical problems both in relation to disease outcomes and symptoms. However, the effect on disease outcomes was only evident in the diabetes studies. While some of this difference may be a consequence of more diabetes studies (and the use of the two previous reviews in MS and diabetes), there may also be a more fundamental reason. The lack of benefit in COPD and MS (particularly the latter) may be because patients problems generally worsen despite care input. In diabetes the nursing contribution can be clearly linked to clinical effects largely because diabetes is a disease with very modifiable risk factors while the scope for disease modification is more limited in both MS and COPD. However, the positive effect on disease symptoms and problems is more consistent between the disorders with consistent evidence showing the positive Queen's Printer and Controller of HMSO

126 effects of nurses on psychological well-being. There is only a very limited evidence for the impact of nurses on social needs. Identifying clear outcome effects in a broad review is challenging as there are a number of confounding factors to consider: some of the studies compared nurses with doctors where the desired outcome is no difference (equivalence); the COPD and MS reviews both contained prior systematic reviews which were handled as single studies with variable interpretation; the very broad definition of the nursing contribution (high level of heterogeneity); variations between disorders; and the lack of evidence from high quality trials. Therefore, the material provides a broad pattern of the impact of nurses on CDM and it is not possible (or intended) to derive any precise estimates of effect from the material. The review also highlights the difficulty of comparing outcomes between disorders. Cost-effectiveness The identified impact of nursing on care costs is set out in Table The two main areas of economic effect were in reducing hospital admissions and in reducing the length of hospital stay in hospital. There was also some evidence to show that nurses can alter consultation rates either increase (better use of services for secondary preventative of more costly problems) or decrease (stop inappropriate use of services or reduce doctor time) for cost savings. Although there were little data to support the former and the latter can be reversed with increased referral rates. While some of the studies identified substantial savings, few provided a full economic appraisal. One of the stronger examples was found in the diabetes review where a admissions were reported to be 436 cheaper when patient was seen on the ward by a diabetes specialist nurse (Davies et al, 2001). In the COPD review there were similar examples (see Example 3). Queen's Printer and Controller of HMSO

127 Example 3. A nurse-led acute respiratory assessment service reduces hospital in-patient stays This nurse-led initiative based in an acute hospital. Patients were referred either by their GP, A&E, the medical wards or self-referral. Nurses visited patients intensively at home for three days and then depending on need. Nurse could adjust medication to protocols. Their care packages, which were managed by the nurse, comprised: high dose inhaled or nebulised therapy; oxygen; antibiotics; steroids and information leaflets. If the patient s condition exacerbated there was a care pathway through which the nurses could organise a direct admission. Following discharge patients were followed-up with regular telephone contact to discuss any problems. Two hundred and eighteen patients were followed-up, three quarters of whom had severe COPD. Pre-test the average length of admission for these cases was 8 days, post-test it was 3.8 days. Gibbons, D. (2001) A nurse-led pulmonary rehabilitation programme for patients with COPD. Professional Nurse. 17(3): These examples suggest that, while preventing hospital admissions is desirable (e.g. the community matron), having specialist nurses rapidly assess and coordinate in-patient care may substantially reduce the use of hospital beds a key target for government policy National participative events impact Nurses perspectives The nurse participants reported that their contributions yielded benefits to the patients, families/carers and the health service at different points of the care trajectory. Reported benefits to the patients exceeded those reported regarding the family/carer and the health service. At diagnosis improved psychological well-being of patients was a major theme and included adjustment to the disease process, reduced anxiety, reduced isolation and experience of empathy. Improved understanding of their condition was another important theme and included enabling the patient to take control of their disease, becoming an expert patient and improved self-care capacity and adherence which was thought to result in less complications (or earlier identification of comorbidities) and longer employment. A number of reported benefits related to the patient experience and included individualisation of care, informed choice, continuity of care experience and relational continuity. A number of benefits were reported regarding the family/care and included a reduced impact on family, fewer relationship breakdowns thus preserving family integrity and reassurance of carers. The nurse contributions were also reported to yield service benefits which included the appropriate (reduced) use of health care, a good interface between primary and secondary care, voluntary and social services departments, improved primary care and use of evidence based guidelines ensuring better outcomes. Queen's Printer and Controller of HMSO

128 The nurse participants also reported that their contributions when new events occur or when there is a sudden change in the patient s condition yielded benefits to the patients and the health service. Reported benefits to the patients exceeded those reported regarding the health services; remarkably there were no reported benefits to the family/carer. Improved psychological well-being was again a major theme and included feelings of security and confidence and less isolation. Improved self-management and care management was another major theme and included patient empowerment, improved symptom management, better medicine management, improved adherence, early intervention, prevention of crises, reduced complications and identification of other illnesses. Aspects of the care experience were also a theme and included informed choice, continuity of care experience, patients feeling treated as individuals, improved patient satisfaction as most patients prefer to stay at home. The nurse contributions were also reported to yield service benefits which included improved health care access, good continuity between primary and secondary care, appropriate location of care, reduced hospital use (in-patient and out-patient; early discharge; reduction in crossinfection) and reduced GP consultations. The nurse participants reported that their contributions to the on-going care of patients yielded benefits to the patients and the health service. Remarkably there were no reported benefits to the family/carer. Improved psychological well-being was again a major theme and included improved confidence, less isolation, reduced anxiety, empowerment, coping strategies and preparing for an active death. Improved quality of life was a major theme and included maintenance of independent living, living to the full potential and vulnerable adult protection. Another major theme was improved care experience which included patient satisfaction, continuity of care and choice of place of care. Improved health outcomes were also identified as a benefit and comprised improved self-care; concordance; reduction in complications/symptoms and longevity of life. The nurse contributions were also reported to yield service benefits which included improved health care access, continuity of care across health and social care, improved service delivery including correct management, consistent care, evidence-based guidelines/protocols and cost savings through reduced hospital use (in-patient and out-patient). Service users perspectives The users reported that the nurse contributions at diagnosis yielded some benefits which included: Someone to talk to and being there ; In A & E most helpful thing was reassurance ; Felt as though disorder is being managed (Site 1); Allaying fears (Site 3); For some of us the practice nurse was able to help, advise and encourage ; Specialist nurses allowed patients to express emotion (cry) (Site 4); and Queen's Printer and Controller of HMSO

129 However, the benefit was not clear to the users at Site 2: Learnt more through support group and mutual support. The users reported that the nurse contributions when new events occur or when there is a sudden change in the patient s condition yielded some benefits which included: Referrals and access to equipment (Site 3); Specialist nurses will give reassurance, listen, will try and give confidence to patient especially if they are on their own (Site 4); Provide information of what is happening, answer any questions or doubts you have and Provide tea (Site 1); Follow-up after change in medication, and: Signposting to other organisations (Site 2). The users reported that the nurse contributions relating to on-going care yielded benefits which included: Support and information ; Provide human element ; Update with latest developments (Site 1); Specialist Nurses make a whole world of difference by being friend, Mother, Mate and most importantly give confidence and friendship to patients (Site 4); Provides continuity, it is usually the same nurse ; Availability ; Gives us confidence that what we are doing is OK (Site 3); They are someone you can trust to know what s your problem and give you the right information ; Speak in a language you understand ; and Speed processes ie referral to other services (Site 2) Nurse interviews & questionnaires - impact The nurses rated the extent to which they believed their care activities impacted on different patient outcomes and needs (0= no difference, 1 = a little, 2= some, and 3 = a great deal of difference) (see Figure 3.15). Overall the nurses believed that their activities had a medium to strong influence on most patient needs and outcomes with the exception of crises prevention. Queen's Printer and Controller of HMSO

130 Figure 3.15 THE AREAS THAT NURSES BELIEVE THEY MAKE THE MOST IMPACT (MEDIAN AND IQR) Patient perspectives - impact of contribution Perceived benefits of contact More than two thirds of participants (70%) had been seen by a nurse in the past 12 months for some support with their disorder. The two groups of nurses of greatest importance to the participants were the specialist nurse and the practice nurse. Overall the specialist nurses were given the highest rating with a significantly strong rating in MS. The data for diabetes and COPD suggested the practice nurse also has an important role to play (see Table 3.7.4). In terms of what the nurses did (nurse activity scale), the strongest area of activity was condition support (e.g. support with day-to-day management of condition), followed by care co-ordination; psychosocial support; and lifestyle help (e.g. diet, smoking exercise). The weaker areas of activity were support with activities of d aily living and family support (see Table 3.7.6). These findings were consistent between conditions with the exception of lifestyle support which was significantly higher in COPD than in the other conditions (probably due to the precedence given to smoking in this disorder). The input of nurses into care co- Queen's Printer and Controller of HMSO

131 ordination was significantly lower in COPD. MS patients gave significantly stronger activity rating for nurses in relation to psychological and family support. Patients who had had contact with a specialist nurse reported significantly (p<0.01) higher levels of nurse activity for all categories with the exception of lifestyle support. However, this difference was largely contributed by the MS specialist nurses with differences being less marked between the patients in the COPD and diabetes subsets. This difference may be explained by MS care generally not being provided by other nurses such as practice nurses. In comparing specialist and primary care the nurse activity levels were significantly (P<0.05) stronger for psychological support in the specialist centres (a mean of 69 (SD27) compared to 63 (SD29) in primary care) and stronger for lifestyle in primary care (a mean of 70 (SD31) compared to 61 (SD32) in primary care). The importance of the specialist nurse to these patients is consistent when compared to other health professionals and sources of support (see Table 3.7.5). Specialist nurses are perceived to be the most helpful provider of health care support for their condition across the disorders. Family and friends are also identified as being helpful with the exception of diabetes. Consultants were consistently identified as being helpful across the disorders. Primary care professionals including GPs and practice nurses were more strongly rated by patients with COPD or diabetes. Therapists were more helpful for patients with COPD and MS. NHS Direct was the weakest area of support, although patients with COPD reported finding the service more helpful. Queen's Printer and Controller of HMSO

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134 Further comparisons with other professionals in relation to specific areas of CDM confirms the strength of the nurses contribution in providing practical help, self-care support and support with day-to-day living (3.7.6). There are some differences between disorders with the patients with MS most strongly identifying the nurse as the person who is most helpful. In diabetes the doctor was also rated quite highly and in COPD the doctor was consistently rated as being more helpful than the nurse. It is also clear from these data that patients do not perceive that any of these professionals provides help for their families. Patients views of their health care Overall satisfaction with health care was quite high with a mean of 74 (SD 23) on the CSQ_8 satisfaction scale (Attkinsson CC & Larsen 1990) (this scale scores from 0 to 100). However, there were significant differences between the disorder groups with patients with diabetes (80, SD 20) patients being the most satisfied followed by those with MS (73, SD 22) and COPD (67, SD 27) (F=25, df=2, p>0.001). A similar pattern emerged when patients were asked about how frequently (never, rarely, sometimes, usually, always) that they felt their care was: available to them when they needed it; whether they were involved in their care; whether they experienced care continuity; and whether their care was co- Queen's Printer and Controller of HMSO

135 ordinated. These scales are identified in Table (score 0 to 33= never to rarely, 34 to 66 = sometimes, >66 = usually to always). The data show that patients generally can access care, feel involved in their care, experience continuity and co-ordinated care most of the time. The patients with COPD reported a poorer experience compared to those with diabetes or MS. Table displays the proportion of people who were very satisfied and who usually perceived that care was available, that they were involved in their care; and that it was co-ordinated. Again the patients with COPD reported poorer satisfaction with care than other patients. Impact of nursing Satisfaction was strongly related to contact with a nurse. In patients who had contact with a nurse for their disorder in the last 12 months (n=465), 79% had a high level of satisfaction compared to 49% (n=198) in those with no contact ( =60, 2 df, P=0.001). This effect was consistent across all the disorders with difference being 35, 25 and 33 % higher in the nurse contact groups for MS, COPD and diabetes respectively. There was also a difference in the level of satisfaction when the contact was compared between specialist disorder nurses and other nurses. Care availability (79% v 63%), involvement (89% v 70%), continuity (75% v 54%), and co-ordination (82% v 66%) were also strongly related to contact with a nurse compared to no contact (p<0.05). These effects varied between disorders and between contact with specialist and non-specialist nurses. The difference by nurse contact was only significant in continuity for the patients with MS and COPD (31% greater for contact in MS and 28% in COPD). There was a slight difference between specialist (n=378) and non-specialist nurses (n=101) for continuity with a small number in the lowest level of continuity group (2% v 10%) (p=0.03). Queen's Printer and Controller of HMSO

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137 Care co-ordination varied little between the disorder groups with all having significantly higher levels of experienced co-ordination when the patient reported contact with a nurse. However, there was no difference between specialist and non-specialist nurses. Involvement in care followed a similar pattern as for co-ordination between disorders, although there was a difference between specialist and non-specialist nurses. There were 12% more highly involved patients who had input from specialist nurses (n= 381) compared to non-specialist nurses (n=99) (p=0.001). In relation to availability this effect was only significantly different in the MS group and there were no differences for specialist nurse contact. Managing own care needs Overall patients reported high levels of self-care behaviours in terms of mastery (confidence in managing their own care) and in adherence with medications. However, the level of engagement in their care (such as attending reviews, carrying information about there condition, acting on health care advice) was lower (see Table 3.7.9). There were differences between the disorders with patients with diabetes being more engaged in their self-care than those with MS or COPD, although the patients with COPD were more likely to be adherent with their medications. Table Self-care behaviour Overall (n=766) Diabete s (n=322) MS (n=304) COPD (n=142) Difference mean (SD) mean (SD) mean (SD) mean (SD) ANOVA Mastery (0-100) Engagement (0-100) 75(19) 75(19) 76(18) 75(20) NS 62(22) 67(21) 58(22) 59(24) P<0.001 MARS (0-100) 88.5(14.7 ) 86(15) 89(14.5) 91(14) P<0.001 Impact of nursing In terms of mastery, more patients who had had contact with a nurse in the last 12 months (n=523) for support with their disorder reported a high level mastery (score >66) compared to those who did not reported contact (n=218), (76% v 65% respectively). This proportion was higher in patients who had input from a specialist nurse (n=415) at 79% compared to the non-specialist nurse (n=108) at 67%. There was no difference in nurse contact regarding selfcare engagement or for reported medication adherence (MARS). Queen's Printer and Controller of HMSO

138 What one thing would most meet your current needs? Finally patients were asked to identify the one thing that would most meet there current needs. Two hundred and eighty five patients (34.9%) responded to the question. The responses were analysed thematically and mapped to the conceptual model where they were suggestive of activities related to the nursing contribution: Assessment Regular assessment of needs (n=10) Health promotion Lifestyle support (n=13) Self-care support (n=5) Clinical interventions Education & information related to disorder (n=22) Support in managing complications (n=16) Provision of psychological support (n=15) Support with medication use and health technology (n=14) Health care organisation Need for educated and informed nurses in community & acute settings (n=23) Greater nurse accessibility & availability (n=13) Better working between agencies and professionals (n=11) A number of the responses did not map to the nursing contribution these are presented below: A cure (n=30) To be involved in patient support groups/ networks (n=5) To be supported in employment (n=4) Changes in social care services/ benefits (n=17) Additional access to treatments & services (n=13) Regular contact & involvement with medical staff (n=7) Additional access to exercise, leisure & sports services (n=5) Amendments to care system failures (i.e. appointment cancellations) (n=5) A full overview of the themes can be found in Appendix 10. Queen's Printer and Controller of HMSO

139 4. Discussion This chapter presents a synthesis of the multiple data sources presented in Chapter 3. This synthesis brings the different data sources together to identify the nature and extent of the nursing contribution to CDM and suggestions for policy, workforce development and research that might extend the nursing contribution to CDM. The limitations of the study are also outlined. 4.1 Assessment synthesis The different data sources suggested that nursing contribution to assessment is complex and multi-dimensional. However, the data also made it possible to distinguish the contribution of nursing to care assessment in relation to the stage, function and form of assessment. Stages of assessment The assessment contribution of nurses was identified at all the different stages of the disease trajectory: the preliminary screening of patients prior to diagnosis and diagnosis itself; initial assessments which included support during diagnosis; ongoing assessment including monitoring the disease progress; event management including the identification of changes in health status and circumstances. These stages were evident both in the literature, the national participative events and the nurse interviews. There was variation in the way that nurses contributed to the assessment at these stages both between and within the selected disorders. Each disorder appears to have its own pattern of assessment which is shaped by the nature of the disease and its event profile (frequency and severity of change), although some form of regular review was a common component across all the disorders. Function of assessment Clinical profiling and monitoring disease progression were the most common foci of assessments undertaken by nurses. There was an emphasis on synthesis both in terms of creating and confirming a clinical profile of the patient and a wider picture of the patient within a psychosocial context (adjustment to disease, social resources and support). Key functions of the assessments were also to address risk and promote patient safety. The assessment of risk involved not only identifying those at immediate risk but also sought to identify patients with early warning signs of problems so that risk could be anticipated. Queen's Printer and Controller of HMSO

140 While the literature review questioned the extent to which nurses actually owned the assessment outputs (that is, nurses simply collect data for others), the nurse data indicated that nurses owned the assessment outputs, although this may have been because the majority of study participants had more advanced nursing roles. There was limited evidence relating of the extent that patients were involved in the assessment process which is advocated as an important part of CDM (DoH, 2008a). Form of assessment The form (method) of assessment was not well specified. The most consistently identified method of assessment was based around an Activities of Daily Living assessment, supplemented by the use of other more specific assessment tools encompassing both clinical data and the use of standardised measures for psychological assessment. The variety of assessment tools to collect data for the same purpose was noteworthy across the disorders suggesting that the reliability and validity of different assessment models needs to be evaluated to ensure more optimal data collection and synthesis and improved standardisation of nursing practice. However, the multi-faceted multi-levelled nature of the assessments reflects the multiple issues that affect people with chronic diseases both clinically and psychosocially Assessment form is also expressed in terms of disease monitoring regularity which is a central feature of patient care management. The regularity is partly embedded in routine assessment such as annual checks and partly in the wider CDM system, enabling patients or other professionals to action an assessment on demand. The efficiency of these regular assessments was not identified in the data. An evaluation of the optimum regularity of disease monitoring with reference to efficiency and effectiveness is needed to inform best practice. Technology shaped the form of the assessment contribution of nurses. The nurses accounts concurred with the literature findings to show that nurses used a variety of technologies both to shape data collection and to record and organise data. Data collection technologies included diagnostic equipment such as bladder scanning devices and clinical tools such as screening instruments and tests. Technology in the form templates was also being used to collate data with such data being used for audit and proofing purposes. However, while the literature review suggested that tele-care methods were extending the monitoring capacity of nurses, there was little reference by either patients or nurses to these technologies suggesting that such methods are not yet widely used within current service provision. Further inquiry into the potential utility of these methods will be important both from a service perspective (will they improve demand management) and a patient perspective. Queen's Printer and Controller of HMSO

141 4.1.1 Patient views and experience of assessment The patient accounts and views on the assessment contribution of nurses indicated that patients accept and value the assessment of nurses in relation to most aspects of their condition. Indeed, many patients would prefer more assessment by nurses undertaken more frequently. The patients appeared to value multiple elements of the assessment, especially feedback regarding their overall health status (how well they are doing) and in relation to their self-care performance. The data revealed some variation in the quality of assessment, with variations being related to the context of care (general encounter or focussed assessment), the nurse (level knowledge and skill) and the point in the patient journey (there seemed to be more variation at diagnosis). The assessment and inclusion of carers in the assessment process was not evident and is a potential area of weakness in care delivery. Some patients expressed concern over care from non-qualified health care workers and valued exposure to nurses with high levels of competence and expertise Recommendations An assessment of the reliability and validity of different assessment tools is needed so that there is some standardisation of nursing assessment procedures undertaken for the same purpose. Disease monitoring is a central feature of CDM but little is known about the efficiency of regular assessment. A cost-effectiveness assessment of regular assessments undertaken by nurses would be useful to inform best practice. The use of tele-care to extend the capacity of nurses is being promoted but little is known about whether it will improve demand management and its acceptability to patients. With most CDM now delivered in the home setting and with an increasing reliance upon carers to support patients with their self-care, greater inclusion of carers within the assessment process will be important especially if the National Carers Strategy (DoH, 2008c) is to become a reality. 4.2 Health promotion synthesis The different data sources suggested that health promotion is not focused across the spectrum of primary, secondary and tertiary prevention despite current health policy initiatives (DoH, 2005a). Primary prevention Primary prevention was not strongly identified in the data although it may be the case that the focus of this study failed to capture adequately the nursing contribution in this area. Further, while this type of prevention is not universally applicable for the selected disorders of MS or Type 1 diabetes, it should be a Queen's Printer and Controller of HMSO

142 priority in areas where disease prevention is possible. Indeed, much public effort is being devoted to weight management (DoH, 2008b) and smoking cessation (HMG, 2010) in order to reduce the overall health burden. Additionally programmes like the current Vascular Assessment programme (DoH, 2008d, NHS Health Check Programme, 2009), which is being delivered by practice nurses needs to be assessed to determine whether it is effective in achieving its stated aims. Secondary and tertiary prevention Patient education delivered through both individual and group strategies with an emphasis upon promoting self-care support behaviours and healthy lifestyles were the focus of the nursing contribution. While there is evidence that structured group programmes have some impact (eg. DAFNE Study Group 2002), the effect of both individual and group strategies needs clarification so that nursing practice is targeted to yield maximum effect. Identifying which type of strategies is most effective in providing self-care support would be helpful Patient views and experiences of health promotion The patient accounts and views on the health promoting contribution of nurses suggested that self-care support and the provision of information by nurses are important to patients. But the patients also indicated that they want greater consistency and access to educational and information resources Recommendations Primary prevention is a key component of the public health role of all nurses; however, it is not clear how effective current primary prevention initiatives delivered by nurses are. An assessment of the cost-effectiveness of this activity is needed. Much nursing time is spent promoting self-care support behaviours, however, little is known about the relative effectiveness of the different approaches to patient education to inform best practice. An assessment of the effectiveness of the different approaches is needed. 4.3 Clinical care synthesis The study data identified the contribution of nurses to clinical care across four areas: continuing management; clinical interventions; psychosocial interventions; patient involvement; and patient safety. Continuing management The data showed that nurses (particularly practice and specialist nurses) in each disorder were often the central point of reference for the patient in shaping their day-to-day care. A model was developed from the literature review that positioned the nurse at the centre of a care triangle, managing interactions between: a) changes in the disease or patient (gradual or acute); b) changes in therapy (and its effects); and c) self-care behaviours Queen's Printer and Controller of HMSO

143 The model relates the specific functions of the nurse in educating patients, interpreting the meaning of events and medical instructions, monitoring treatment effects, modulating therapy and referring or conferring with other professionals and services. Thus the nurse functions either as the direct adjuster of these therapies (patient or nurse identifies significant change and nurse tells patient what to do) or as educator (nurse educates patient so that they can adjust therapy for themselves) in managing the relationship between the changing disease state and the therapy. Figure 4.1 CONTINUING The model was confirmed across the nursing data sources with each of the composite themes being identified in the nurse interviews. The nurses felt that their contribution was strongest regarding onward referral and self-care support. The nurse interviews provided multiple examples of this model in both the assessment and clinical care themes. Identifying clinical needs, introducing and managing therapies and supporting self-care behaviours were common within all the selected disorders. This level of contribution was most apparent in relation to specialist nurses, although there was some evidence in practice nursing across the three disorders. Evolving care The process of continuing care support is continually evolving with the patient s needs. There were some differences between the disorders in the way in which care evolved. While in part those differences relate to the natural history of the selected disorders, they also reflected differences in the way in which care is organised. Two distinct patterns were observed. In diabetes care evolution was defined in terms of gradualism (the nursing approach is consistent over time Queen's Printer and Controller of HMSO

144 and moves with the changing patient health status). In contrast in MS the pattern was defined as punctuated equilibrium (the nursing approach and roles changes with the patient state). In this latter model care evolves in steps: manage diagnosis; attempts to modify the disease; solve acute problems; prevent/manage symptoms; and then manage disability. At each stage a different service or nursing role may be introduced which includes the use of specialist nurses with generic responsibilities (such as incontinence or pain specialist nurses). The model set out in Figure 4.2 emphasises the involvement of the patient which is discussed later. Thus to understand the contribution of nurses to CDM in terms of clinical care it is important to reconcile the differences between disorders and care contexts. This may be somewhat at odds with the movement towards more generic care pathways for those with chronic diseases. Figure 4.2 CONTRIBUTION OF NURSES WITHIN THE CDM SYSTEM Clinical interventions The data provided a limited account of specific nursing interventions despite much clinical intervention activity being reported. While the data contained multiple examples of nurses initiating and supporting the use of different therapies, there were few examples of therapies that were centred in the nursing domain (with the exception of psycho-educational interventions which are discussed independently). Indeed, nursing care was weakly identified in both the literature review and the nursing data. The nursing contribution Queen's Printer and Controller of HMSO

145 appeared to support the delivery of care and work with patients to accommodate health technologies and their self-care practices. However, the independent contribution of nurses may increase with the expansion of nonmedical prescribing, although the data from the national survey suggested that non-medical prescribing is still in its infancy in terms of the volume of nurses actively prescribing within CDM. Psychosocial interventions The nursing contribution both in the accounts of the nurses and the patients emphasises the importance of the psychological support. Patients consistently identified this as one of the most important elements of their interaction with nurses and generally wanted more of it. Most of the psychological interventions described by the nurses appeared to be relational rather than modelled on any particular explicit method. While there were examples of nurse delivered therapies including motivational interviewing and CBT in the literature review, these practices did not appear to be part of current mainstream provision within the case study sites. The psychological care in this study data comprised the identification of psychological morbidity and onward referral to formal psychological services or to others to instigate appropriate therapies. Therefore, the contribution to psychological care in CDM by nurses is largely implicit within the clinical relationship that they have with patients and in the informational/educational functions that they perform. The patients referred to listening to them, giving them confidence, reassuring them and allowing them to problem solve. This care also relates to the interpreting function set out in Figure 4.1 in which nurses help patients understand what is happening to them and why; a function that is inherently psychologically active (reducing anxiety). However, as more is understood about both the prevalence of psychological morbidity within CDM and its effect on self-care performance, it is likely that nurses will need more specific skills to manage these problems. Greater understanding of the use of psychological therapies within CDM and their use by nurses would be useful to develop nursing practice and care delivery. There were limited accounts of social interventions in the literature review and social support was one of the lowest aspects of clinical care activity reported in the nursing data. Some activities included the development of social networks and onward referral to social services departments. Given the impact of chronic disease upon the social domain of people s lives (family, employment, housing and social welfare), it may be important to develop this aspect of the nursing contribution further, or at least ensure that there is sufficient understanding of the social care resources available to support patients and their families. Patient involvement A key area identified by the nurses that defined their contribution was the support of patients to be more active in their care. This included involving them Queen's Printer and Controller of HMSO

146 in decision making, allowing them an opportunity to describe their own problems and concerns and encouraging them to self-care. Further it was noted that patients reported that they would like to be more involved in their care. With the development of initiatives such as co-creating health (Health Foundation, 2008) and expert patient (DoH, 2001b) programmes, it is important that nurses are properly supported and trained in developing patient involvement within CDM. The patient data showed that patients who had had contact with a nurse experienced significantly higher levels of involvement in their care. Patient safety CDM is often complex with multiple risks to patients both from disease complications and from therapies. The nursing data suggested an important function of the nursing contribution is to ensure that therapies are used safely and efficiently. Therapies such as inhalers, insulin and disease modifying therapies in MS require continuous management if they are to be used safely. This can involve: interpreting clinical effects (noting changes in blood results which may lead to hazard); ensuring the therapy is given with a good technique (avoiding injury or distortions in effect); and how to adjust therapies when circumstances change or events occur (e.g. inter-current illness) Patient views and experience of clinical care The patient accounts and views on the clinical care contribution of nurses suggested that patients value the psychological support that they receive from nurses, especially specialist disorder nurses, and the support that they receive from nurses in managing the health technologies required for their care. Patients who had greater contact with nurses reported being more involved in their care. Patients would like nurses to involve them more in the care process and share decision making with them Recommendations Two care pathways are emerging within CDM; the generic care pathways versus disorder care pathways. It will be important to compare the relative merits of the different care pathways. Reflecting the emergent care pathways, was evidence of variability in both the quantity and quality of care delivery within the selected disorders which needs addressing if there is to be High Quality Care for All (DoH, 2008e) The study data indicated that much of the nursing contribution to CDM is shared with others because nurses are dependent upon others to prescribe treatments. The expansion of non-medical prescribing will enable the independent contribution of nurses to CDM. Patients value their involvement in decision-making about their care but evidence of patient involvement in all aspects of their care delivery was limited. Additionally, while the lives of patients and their families are greatly changed by the experience of a long term disorder, there was limited Queen's Printer and Controller of HMSO

147 evidence of nurses offering social interventions. Nurses need development to improve their involvement of patients in decision-making and their delivery of social care support. Psychosocial interventions by nurses form a major component of the nursing contribution to CDM and were highly valued by patients. However, these interventions are mainly within the clinical relationship and their effect upon clinical outcome has not been assessed. There was limited evidence of the use of formal psychological interventions by nurses despite the growing recognition of the value of CBT and motivational interviewing in helping people manage challenges in their lives. An assessment of which psychological therapies yield benefit to clinical outcomes would be helpful to inform best practice. 4.4 Care organisation synthesis The study identified multiple functions of nursing within the organisation of CDM. While the nurses suggested that care organisation was the smallest element of their contribution (relative to assessment, health promotion and clinical care), this may be because the contribution is more implicit in the things that they do rather than as a designated role. Key elements of the nurse contribution across the data sources were: improved access; continuity of care; care system regulation; cross-boundary working and tele-care. Access Access was identified as an important function of the nursing contribution across the different datasets. Nursing both enabled initial access to care either proactively (by finding patients unknown to services) or reactively (being a point of reference for people or professionals to access care). Nursing also provided a mechanism for continuing access by being the first point of call for patients for support with their disorder. This function was particularly strong in supporting people with MS because they did not have access to appropriate support in primary care. This function was strongly supported by the patient data, which showed that the availability of care was significantly greater for patients who were in contact with a nurse for their disease management, an observation that was much stronger with the MS patients. Continuity While relational continuity within care appeared to be important to patients, the contribution of nursing to continuity was not isolated to relational continuity. There were examples of nursing contributions to experienced, informational, cross-boundary and longitudinal continuity (Freeman et al, 2000) across the data sources. However, these examples were not universally positive with some patients reporting that nurses did not always provide consistent information. Hence the nursing contribution can have negative consequences when the quality and consistency of the contribution is compromised. Overall, however, Queen's Printer and Controller of HMSO

148 patients who had nursing input within their CDM reported significantly higher levels of continuity compared to those without nursing input. It appeared that specialist nurses had the strongest effect on continuity. Care system regulation Care systems in CDM are increasingly being regulated (standardised) by: evidence based protocols and guidelines; clinical objectives (what is intended to be achieved with the patient); information management demands; quality assurance and accounting procedures; and definitions of organisational priority. The reviews highlighted some important differences in these care system regulating mechanisms between the selected disorders. A key difference was the extent to which the care system and the action of the nurses within that system could be regulated by guidelines. Diabetes is the most distinct as much of the management by nurses is highly regulated by clinical guidelines (NICE 2002a-d) and clinical objectives with diabetes care being largely targeted towards common, specific and highly modifiable clinical objectives (glycaemic control, blood pressure etc). In contrast the care objectives for MS care are diverse (at both the macro- and micro-problem levels) and may include management of non-specific symptoms (e.g. problems like fatigue) or may be very individual to the patient s presentation and point in the disease trajectory. Many of the problems confronting people with MS are not easy to modify. The COPD guidelines (NICE, 2004) are also less useful in care system regulation because the patient s symptoms are likely to be more acute, rapid and unpredictable in onset in contrast to diabetes where they tend to be more insidious and follow a linear model of progression. The care systems are also becoming more technologically complex following informatics models. While nursing clearly contributes much to the collection of data and monitoring data within these systems, it is otherwise unclear to what extent nurses are influencing the development of either the care system or the technologies that they incorporate. There appear to be four different models describing the relationship between nursing and these system technologies 1. The nurse as technology: in this model the nurse functions as a technical interface (or as a technology) feeding the system with the information required for others to interpret; 2. The nurse as technologist: in this model the nurse acts as an output analyst (monitoring patient progress through determining, directing and meeting care needs). 3. The nurse as system engineer: in this model the nurse acts as the system manager and contributes to the way that the care is organised to fulfil the overall purpose of the care system thereby shaping the care system to improve its efficiency. 4. The nurse as architect: in this model the nurse contributes to the primary system design by deciding factors such as inclusion criteria for the service, Queen's Printer and Controller of HMSO

149 treatment processes and other structural components that define the care system. All these models were identified in different elements of the study with Models 1 and 2 being the most common. However, a number of system development initiatives were identified which are consistent with Models 3 and 4. The models are not mutually exclusive with the nurse functioning within all the models. However, in Model 1 the nurses are alienated from the overall purpose of the system and are passive (responding to developments by others) rather than active (challenging, questioning and contributing knowledge) in developing and managing the care system. Importantly these models may define professional power so that, unless nurses engage themselves at all these levels, they will be (remain) subordinate within the application of clinical activity. In part the limited involvement in care system design may reflect a lack of health informatics training for nurses working in CDM. Cross-boundary working The contribution of nursing to cross-boundary working was identified by both patients and nurses as being important. This contribution drives developments in other services through the professional education function of the nurses and through the development of shared working practices between different groups/services. There was also much intra-professional cross-boundary working, both laterally (specialist nurses support practice nurses in disease based decision-making) and vertically (specialist nurse educates ward nurses on aspect of care). From the patient perspective contact with the nurse was associated with significantly higher levels of care co-ordination suggesting that managing crossboundary issues is part of the nursing contribution and impacts positively upon experienced continuity. Virtual care Virtual care relates to the relational care identified previously and the expansion of tele-care and e-health strategies in which nursing is involved. The care setting in CDM is in many ways virtual (centred upon a relationship between the patient and the care system) rather than place centred (hospital ward or clinic).traditionally care organisation could be defined by the activity (the hernia repair) or the building (the A&E department) with the place and time of care being clearly defined. In CDM the place and time are more complex, with events or activities being continuous and care occurring in many different settings. Part of the nursing contribution is providing the place of care in a virtual sense with nurses being the care interface through which patients experience care thereby forming part of the structure for the organisation of Queen's Printer and Controller of HMSO

150 care. Thus the nurse becomes the central reference point, the building block, of the service structure creating a virtual care centre used by the patient and other professionals. The electronic media allow that interaction to occur at a distance and more flexibly, depending upon the availability of the service. This is an important area of development in CDM. Developing virtual management systems to support the nursing contribution to CDM may help in managing the growing population of patients with chronic disease Patient views and experience of care organisation The patient accounts and views on the care organisation contribution of nurses suggested that nursing is important in helping patients to access information, care and services and contributes to the integration of care between professionals, services (primary and secondary) and organisations. The data indicated that, where patients have nursing input to their care, they experienced greater access, care continuity and care co-ordination Recommendations Universal good information transfer still needs attention as failures to deliver information in a timely manner impedes high quality care delivery and is a source of patient dissatisfaction. The development of information technology systems to enable information exchange would be useful. CDM is increasingly delivered across settings and time with nurses providing the place of care as the access point to care delivery. The use of electronic media and development of virtual management systems have the potential to enhance the contribution of nurses to CDM. However, there is limited evidence of nurses acting as care system managers and as system designers which may limit their future contribution to CDM. Improved education of nurses in health informatics may enable their involvement in care system management and system design. The development of virtual integrated systems of care may promote improved continuity of care experience and trans-disciplinary working across the different care providers. 4.5 The impact of the nursing contribution The impact of the nursing contribution was considered in relation to care structures, processes, and outcomes. Care structures The literature review found evidence of impact in relation to: health care access; cross-boundary working; education of other professionals; and care system development. The collective data from across the study elements confirmed those observations and found that the nursing contribution included activities that: enhance accessibility and care co-ordination. The data sources Queen's Printer and Controller of HMSO

151 also reported examples of nurse-led service development and nurse contributions to the education of other professional and health care workers. Care processes The literature review showed small positive effects on the care experience, continuous support, event support, information provision, and assessment. The patient data confirmed the impact on care experience with significant contributions to care satisfaction, co-ordination and continuity. Information provision and patient involvement in care were associated with nursing input but there was no association between nursing input and concordance with therapy. Assessment was also one of the most important care elements related to the input of nurses. Care outcomes The literature review identified variable modest effects on patient behaviours (self-care); quality of life; physical, psychological and social problems. While the study was not able to measure specific outcomes, the patient data showed that those in contact with a nurse had higher levels of self-care mastery, particularly in relation to contact with specialist nurses Nursing roles The impact of the nursing contribution is contingent on the nature of the nursing role. The data suggested that specialist nurses within single disorders included in this study were seen as very important by patients both compared to other professionals and types of nurses. Additionally generic specialist level nurses such as practice nurses were seen as more important when care is shared with primary care. The material from across the data sources highlighted a number of different facets of nursing role developments in CDM reflecting the expansion of the nursing role in CDM over the last thirty years. This expansion can be broadly categorised as being either hierarchical (role developments that expand the levels of the contribution) or lateral (across clinical boundaries or settings). The data sources also highlighted a number of other themes related to role developments in nursing which included: developmental drivers; role stability; role heterogeneity; invisibility of traditional nursing; sub-specialisation; and pattern of contact. Hierarchical expansion The hierarchical expansion was evident in the national survey in all three disorders with the development of the specialist nurses and more recently the hierarchical expansion was evident in the national survey in all three selected disorders with the development of the clinical nurse specialists and more recently the nurse consultant role. The nurse consultant role was instigated to Queen's Printer and Controller of HMSO

152 provide clinical leadership similar to that provided by medical consultants with an emphasis on: expert practice; professional consultancy; practice and service development; and research and evaluation (Wallymahmed, 2003). While few in number, nurse consultants are increasingly represented across the nursing workforce in all health care organisations to lead the development of services and support other nurses in their delivery of the service. Lateral Expansion Lateral expansion was evident in three interrelated areas: doctor substitution; boundary expansion and advanced nurse roles. 1. Doctor substitution: The data sources provided many examples of how nurses are increasingly undertaking work previously undertaken by doctors. This work included: identifying disease; diagnosis; the initiation of therapies including prescribing; and the independent management of acute episodes of care. A number of studies comparing nurses and doctors have reported nurses being associated with either better or equivalent clinical outcomes, psychological well-being and care satisfaction (Horrocks et al. 2002). However, some of the studies also suggested that nurse provision was more expensive and did not necessarily reduce the workload of the medical practitioner but this may be explained by the nurses identifying previously unmet needs and their limited ability to deal independently with problems creating a knock-on effect for the medical practitioner. The patients in this study reported support for this transfer of work especially where it enabled improved access to health care. 2. Boundary expansion: Nurses are broadening their focus within CDM management. In diabetes there was a general expansion of the contribution in primary and community care settings following the shift to a more primary care based management of Type 2 diabetes. While the literature detailed the expansion of the practice nurse role, in the other data sources there was also evidence that specialist diabetes nurse roles were being relocated into community settings. COPD nurses are operating across services in an attempt to prevent hospital admission through intensive home-based support or community services providing continuing specialist resources in the home setting. In contrast there was no substantial shift in MS care into primary care but there were initiatives aimed at providing more flexible care across boundaries such as the provision of domiciliary IV steroids. 3. Advanced practice: As described in Chapter 1 advanced practice relates to a level of practice in which nurses have strong leadership over the direction of care (Wilson-Barnett, 1994). Advanced practice subsumes both doctor substitution and boundary expansion (as illustrated in Figure 4.3). While nurses are taking on work previously undertaken by doctors, their contribution is distinctive with pure doctor-substitution work in CDM being uncommon. Indeed, the rationale for nurses undertaking some medical tasks such as prescribing is to enable them to improve service access through the provision of Queen's Printer and Controller of HMSO

153 one-stop clinics and complete episode care rather than to simply replace standard medical care. Thus nurses are advancing their role in managing both the individual patient and the overall CDM system to improve service delivery. Drivers for role change The nursing role development in CDM is being driven by a number of factors. Some of the factors identified in the literature review were: the increasing complexity of both clinical and organisational management; the increased emphasis upon self-care behaviours and patient empowerment; the expansion of clinical guidelines, enabling nurses to take on new roles in delivering those guidelines; workforce changes, particularly in MS where the shortage of neurologists was a factor in role expansion; economic factors and the need to minimise unnecessary or costly health care use such as acute admissions; and the desire of patient groups (most notably charities) who see nurses (specifically specialist nurses) as a means to improve access to health care. While this list is not exhaustive and there was evidence in the nursing data of these drivers for role developments both between and within the selected disorders, with many new roles evolving to meet needs within particular clinical settings and across health care organisations Queen's Printer and Controller of HMSO

154 Role stability SDO Project (08/1605/119) The literature indicated that the stability of roles through time varied between the selected disorders. In diabetes there were no accounts of role variation while in both COPD and MS the role was quite dynamic. In both these disorders specialist nursing services appeared more vulnerable, with the service being dependent upon one nurse and/or short-term funding. Indeed, stability of funding for MS nurses in particular was identified in the nursing data which suggests a lack of structural stability with local care needs and funding arrangements influencing how or whether nursing roles evolve, rather than an evidence base. Role heterogeneity Role heterogeneity was evident in all the selected disorders, although the differences were less marked in diabetes. In both COPD and MS there were differences between specialist nurses who were based in acute or secondary care and those based in community or rehabilitative services. Further, in MS there are large discrepancies in the background, training and clinical experiences of the specialist nurses (Forbes et al 2003). A further difference between the disorders contributing to role heterogeneity is funding. In COPD and MS charities (such as the British Lung Foundation, MS Society) have been involved in funding specialist nurse posts. The pharmaceutical industry has also sponsored posts in the three disorders outside of mainstream NHS funding. Disease versus generic specialisation There is an important distinction between generic and disease specialist nurses with variation over who is responsible for what. The generic specialist role is dominated by practice nurses in diabetes and COPD. Community matrons and district nurses were identified as deliverers of specialist care to patients with more advanced disease supplementing the evidence from the literature where there were few examples of these roles. There is a debate about whether specialist disease nurses or specialist generic nurses are more efficient at delivering care, in the same way as the GP and the consultant. For example, the competencies for community matrons in relation to MS include: relapse recognition; the assessment of physical function; and knowledge of the aetiology, progression and interventions for the disease (DoH 2005a). These competencies are similar to those of the specialist MS nurse, although it is questionable whether a community matron could carry such in-depth knowledge across a range of disorders. Other generic specialists are nurses who provide problem related services such as continence, pain, tissue viability and stoma care. Indeed the data showed that the disease specialist nurse was highly regarded by patients as the primary source of support with their disorder, although it is acknowledged that this may in part be attributable to some selection bias in the data set. Queen's Printer and Controller of HMSO

155 Invisibility of traditional nursing Both COPD and MS require high levels of traditional nursing care (support with daily living needs) during the end-stages of the disorders. However, there were very few accounts of this type of care in the literature although there was some evidence of the delivery of traditional nursing care when needed within the nursing data of the study. Whether this reflects a bias in the literature (many of the examples were based on specialist level practice) and changes in registered nurse practice or a genuine shift in nursing away from traditional caring roles is unclear. While et al (2009) noted this potential drift along the labour continua in MS with registered nurses increasingly leaving the dirty work and high physical labour to unqualified staff in contrast to high intellectual, technical, higher responsibility, interdisciplinary communication and emotional labour which is increasingly claimed by registered nurses. Thus there may be a trend to fragment the nursing workforce between different areas of care delivery. The patients in this study appeared to continue to value the traditional caring role of nurses. Sub-specialisation There was evidence in the literature review and nursing data that specialist nurses are developing further sub-specialisations. Thus MS nurses are specialising in specific services targeting areas such as the management of fatigue and spasticity. This also appears to be occurring in diabetes with nurses sub-specialising in areas such as psychological interventions and intensive insulin therapy (pumps) and in COPD with nurses specialising in breathlessness and rehabilitation. The development of such sub-specialisations reflects the increasing complexity of the care required by patients, but also suggests further fragmentation in the nursing workforce. Pattern of contact The frequency and place of contact varies between disorders and during the disease trajectory. There are also variations in the stage at which different groups of nurses become involved in care provision. The model depicting MS care (Figure 4.4) highlights a number of different features in the relationship between nurses and people with chronic disease. Firstly, there is the distinction between continuing support and episodic support. Continuing support relates to the routine contact with patients for regular reviews and monitoring while episodic support relates to the management of events or crises arising when a patient develops a new problem or requires hospital admissions. Secondly, the model illustrates how the pattern of contact varies between the disease stages and the type of nursing input (practice, specialist or district nurse). Thirdly, the model illustrates the importance of other professionals including the GP who for many patients is the constant and central health care professional. Indeed, the importance of the GP to many patients was clear in the study data. Queen's Printer and Controller of HMSO

156 4.5.2 Recommendations SDO Project (08/1605/119) Economic and other factors are driving changes in CDM service delivery models with new roles evolving to meet care needs. There is little evidence regarding the comparative efficiency of disease versus generic specialist nurses or the optimal blend of high skill and low skill nurses within different CDM models to inform best practice although patients appear to value both specialist nurses and the traditional caring role of nurses. Further patient preferences for different skill mix models of nursing have not been explored. The funding of specialist nurse posts especially in COPD and MS were reported to be uncertain leading to service instability so that the evidence base does not provides the impetus for service development. Clarification of nurse funding would therefore be helpful. Queen's Printer and Controller of HMSO

157 Figure 4.4 Nursing roles and frequency of care input Queen's Printer and Controller of HMSO