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Community Nursing Care for Clients with Chronic and Complex Conditions Jane Cioffi, RN, PhD, MApplSc, DipEd(Nurs), BApplSc(Adv Nurs), School of Nursing, University Of Western Sydney, New South Wales Lesley Wilkes, RN, PhD, MHPEd, Grad.Dip Educ, BSc(Hons), School of Nursing, University Of Western Sydney and Sydney West Area Health Service, New South Wales Bronwyn Warne, RN, Grad.Cert.Geront.Nsg, Onc.Cert. BHSc, Grad.Cert.Workplace Relations, Kingswood Community Health Centre, Sydney West Area Health Service, New South Wales Kathleen Harrison, RN, MPHC, BHSc, Onc. Cert., Sydney West Area Health Service, New South Wales Oana Vonu-Boriceanu, Cert App Psy, University Of Western Sydney, New South Wales This study describes community-based clients with chronic and complex conditions and the nursing care they received from community nurses in an area health service in western Sydney. Information from an existing database of occasions of service was de-identified and analysed to identify client characteristics and types of nursing care, community nurses had provided in the period mid-2003 and mid-2004. Main findings were 77% of occasions of service were received by clients who were 60 years with 42% of these being to the 80 years and over age group; overall wound care was the most common occasion of service clients received with follow-up being markedly higher for clients 80 years and over. Clients with carcinoma received the most occasions of service with the palliative care specialist nurse providing more occasions of service to clients with chronic and complex than other specialist nurses. In conclusion, investigation is required to ascertain more definitively how health is addressed with clients with chronic and complex conditions and to clarify the role of the community nurse in the multidisciplinary team. Further, a more sensitive categorisation system that specifically describes the direct components of clinical care given by community nurses able to be accessed by client not just occasion of service needs to be developed and implemented. Keywords: community nurses, community nursing, chronic and complex, clients Correspondence to: Professor Lesley Wilkes Email: mcmanua@wahs.nsw.gov.au Acknowledgements: The authors wish to acknowledge the support from the University of Western Sydney and the Sydney West Area Health Service for providing the funding to carry out the study in the form of a Partnership Grant. Introduction Care of older clients in their homes is a key strategy of the Australian Government for managing its aging population. Many of these older Australians have chronic and complex conditions and are growing in number daily as survival rates increase and control of the progression of chronic disease, health status and health behaviour of new cohorts of elderly people improve (Robine & Michel, 2004). Community nurses are a key provider of health services to this growing group of clients with chronic and complex conditions. However, no study was found that addressed this group of community-based clients and the care they received from community nurses. This study identifies the care clients with chronic and complex conditions receive from community nurses. Background Community nursing services in Australia In Australia over the past decade or more as patterns of health and illness have changed, health costs and pressures on the acute system increased, and advances in treatment made, there has been a steady growth in the provision of community-based health services. Community nursing, part of these community-based services, provides both clinical and primary health care (Kemp, Harris & Comino, 2005) and develops in response to changes in the community and the community based population. A rapidly growing group in this community-based population is clients with chronic and complex conditions (Australian Institute of Health and Welfare [AIHW], 2004). As community nurses are main providers of care to this client group the increasing numbers of clients are and will continue to place high demands on community nursing services. Chronic conditions are estimated to be 70% of the burden of disease and expected to increase to 80% by 2020 (National Public Health Partnership, 2001). Clients with chronic Collegian Vol 14 No 4 2007 21

and complex conditions are clients who are usually characterized by complex causality, multiple risk factors, a long latency period, a prolonged course of illness, functional impairment or disability and in most cases, the unlikelihood of cure (National Public Health Partnership, 2001, p. 9). Community-based population of clients with chronic and complex conditions This community-based population with chronic and complex conditions is a major challenge. The challenge arises from the permanently altered health states and unresolved residual disability these clients have (Miller, 1992) and their ever present risk for decline on the health continuum. This decline is most usually associated with an increase in the number of co-morbidities that impact on clients well being and need for additional care (Williams & Botti, 2002). According to Robine and Michel (2004) as morbidity expands, mortality decreases and disability increases. These changes result in new demands on public health, health care and ageing services (Mokdad et al., 2004). Management of clients with chronic and complex conditions For the management of clients with chronic and complex conditions health services require an approach based on risk reduction that has recently been promoted with three levels of care aligned to different levels of disease complexity (National Health Priority Action Council, 2005). The levels of care for people with chronic illness are: Level One self management for 70-80% of chronic illness population; Level Two disease / care management for high risk clients with chronic disease; and Level Three Care coordination for high complexity clients with chronic disease (National Health Priority Action Council, 2005). This significant recent initiative in organizing health care for this client group reflects the fluctuating demands for care that clients with chronic conditions experience (Hutt, Rosen & McCauley, 2004). Holistic individualized care that includes psychological and social as well as medical aspects tailored to the needs of these clients is an imperative within this tiered structure (Hutt et al., 2004; Krause et al., 2006). This tiered system has implications for community nurses. Community nurses and clients with chronic and complex conditions In an Australian study a change was found in the care that community nurses were providing. This change showed there had been a shift to more acute client care (Kemp et al., 2005). These episodes of acute care were shorter, more intensive and involved more complex procedures with an increased number of adult clients between 1995 and 2000 (Kemp et al., 2005). In this five year period registrations of clients aged 60 years and over for services increased by 6% (Kemp et al., 2005). As chronic disease is strongly related to older age groups the increase in need for health care reflected in these registrations suggests a growing number of clients with chronic and complex conditions are requiring care from community nurses. As the nursing care received by these clients with chronic and complex conditions has not been investigated this study answers two questions. The research questions are, What are the characteristics of clients with chronic and complex conditions? and, What types of nursing care do clients with chronic and complex conditions receive from community nurses? Definition of terms Clients with chronic and complex conditions are those clients who are usually characterized by complex causality, multiple risk factors, a long latency period, a prolonged course of illness, functional impairment or disability and in most cases, the unlikelihood of cure (National Public Health Partnership, 2001, p.9). In the area health service where this study took place these types of clients were classified on the existing database using the following three groupings 1) frail aged and disabled 2) palliative care / oncology and 3) chronic care / wound management. Characteristics are the variables - age range, country of birth, gender, referral source, and primary medical condition. Nursing care involves clinical nursing procedures and management that community health nurses provide to chronic and complex clients, for example wound management. Methods Context of Study: This study investigates a community nursing service in an area health service in greater western Sydney in which 8.4% of the total population was aged. Community nursing services are mainly provided by teams in two distinct geographical sectors, upper and lower with a small number of clients being cared for in services peripheral to these two areas. Design: A descriptive study was designed to describe the characteristics of clients with chronic and complex conditions and identify the types of nursing care these clients received. A study of this design enables identification of the nature and attributes of the phenomenon (Chinn & Kramer, 1991). Approvals to carry out the study were obtained from the Human Research Ethics Committees of a university and an area health service. Sampling: The data source was the community health service client administrative database that held entries of all occasions of service for clients. An occasion of service is defined as a visit to the client by the community nurse to provide care. Occasions of service for clients who had chronic and complex conditions were categorized under three groupings 1) frail aged and disabled 2) palliative care / oncology and 3) chronic care / wound management on this data base. The study sample was formed by selecting all occasions of service for clients in these three groups held on the database for the period from July 2003 to June 2004 after they had been de-identified. De-identification of data entries was carried out by the database manager who extracted all details that could enable identification of clients and nursing staff such as names and addresses prior to forwarding the data in spreadsheets. The total number of occasions of service in the sample for the twelve month period was 147,126. The sample consisted of 71,224 occasions of service from the lower geographical area and 73,130 from the upper area of health service with 692 being from areas peripheral to these. 22 Collegian Vol 14 No 4 2007

Data collection and analysis: Data received on spreadsheets for all occasions of service to clients in the three groupings for the 12 month period from July 2003 to June 2004 inclusive were entered into a SPSS worksheet. The characteristics of clients with chronic and complex conditions and details of occasions of service were summarized using descriptive statistics to calculate frequencies and percentages and tabulate results. This was followed by content analysis of the nursing care reported in occasions of service to identify the main types of nursing care clients had received. The process of content analysis involved consultation with community nurses to ensure descriptors of care clients had received were interpreted and types identified accurately. The statistical analysis was carried out using SPSS version 12.0.1 (SPSS, 2003). Table 1: Frequencies and percentages for types of nursing care required by clients by occasions of service. Type of nursing care Occasions of service f= (%*) Wound Care 56,930 (39) Direct Care Activity 23,623 (16) Assessment 13,395 (9) Medication 3,330 (2) Intake/Triage 2,688 (2) Follow-up 2,538 (2) Stoma / Tube Care 2,217 (2) Case Management 1,088 (1) *All percentages have been rounded to whole numbers Results Community nurses provided 147,126 occasions of service over a 12-month period to community-based clients with chronic and complex conditions in a Sydney area health service. Seventy-seven percent of the clients who received these occasions of service were 60 years and over. Males (58%) received more services than females with three-quarters of the occasions of service being to clients born in Australia or an Oceania country. Slightly more than a third of the occasions of service resulted from referrals from public hospitals (37%) with the remaining being made mostly by community-based services. Ranked from highest to lowest the top ten primary diagnostic groups as assessed by occasions of service were carcinoma, skin disorders, frail age, central nervous system disorders, musculoskeletal disorders, respiratory disorders, renal & genitourinary, circulatory, gastrointestinal and endocrine disorders. With the most common diagnoses being dementia in the frail aged group, Multiple Sclerosis in CNS disorders, Chronic Airways Disease in respiratory disorders, and Diabetes Type 1in endocrine disorders. The most common nursing care received by all clients in this study consisted of wound care, a direct care activity or an assessment (See Table 1). Only 1% of care recorded was indirect. Clients with chronic and complex conditions who were 80 years and over received more occasions of service involving follow-up and case management with the 60 to 79 year age group receiving more occasions of service involving assessment, stoma / tube care and intake / triage (See Table 2). In combination the occasions of service of these two age groups were highest for the following: follow-up, Table 2: Frequencies and percent of occasions of service for age groups 60-79 years and 80 years and over for types of nursing care. Type of Nursing care Occasions of service Occasions of service Total occasions of service for clients 60-79 years for clients 80 years & over for clients 60 years and over f= (%*) f= (%*) f= (%) Wound care 24614 (43) 17401 (31) 42015 (74%) Direct Care Activity 11490 (49) 5520 (24) 17010 (73%) Assessment 6678 (50) 4872 (36) 11550 (86%) Medication 930 (28) 695 (21) 1625 (49%) Intake/triage 1350 (50) 745 (28) 2095 (78%) Follow-up 860 (34) 1594 (63) 2454 (97%) Stoma/tube care 1130 (51) 482 (22) 1612 (73%) Case management 294 (38) 387 (50) 681 (88%) * All percentages have been rounded to whole numbers Table 3: Frequencies of occasions of service for types of nursing care provided by general community, palliative, aged care, psychogeriatric and other nurses Type of Nursing care Nurse Nurse Nurse Nurse Nurse General Community Palliative Aged Care Psychogeriatric Other (f=) (f=) (f=) (f=) (f=) Wound Care 56778 89 10 0 53 Activity 20210 2713 562 23 115 Assessment 9704 1290 1366 117 918 Medication 3307 14 5 2 2 Intake/triage 2574 1 0 0 113 Follow-up 2199 4 320 8 7 Stoma/tube care 2186 8 0 0 23 Case management 366 11 638 54 19 Collegian Vol 14 No 4 2007 23

case management and assessment. Assessment frequency arises in part from a care protocol that requires some form of assessment be made of each client every three months as part of the client s revision of their clinical pathway. Community nurses provided the most wound care to clients with skin disorders and the frail aged; the most medication support to clients with CNS disorders and carcinoma and the most stoma / tube care to clients with CNS disorders and carcinoma. Beside community nurses providing general home-based nursing care other specialist nurses who cared for clients were in the main palliative and aged care and to a lesser degree psychogeriatric and others. Most frequently aged care nurses provided assessment, case management and direct care activities and palliative care nurses provided direct care activities and assessments. Psychogeriatric and other specialist nurses main occasions of service involved assessment (See Table 3). Discussion Main findings showed clients with chronic and complex conditions were referred for occasions of service from community-based agencies more than acute care facilities. Three quarters of occasions of service were received by clients who were 60 years and over with 42% of these being to clients 80 years and over. Clients with carcinoma received the most occasions of service. Overall, wound care was the most common occasion of service with follow-up being markedly higher for clients 60 years and over. The findings of this study show follow-up and case management are part of clinical management, which according to Wagner (2004) are key strategies for improving care of clients with chronic and complex conditions. For clients with chronic and complex conditions in this study the top four types of nursing care received were wound care, a direct care activity, assessment and medications. No other studies were found that identified types of nursing care received by community-based clients with chronic and complex conditions. However, one study in New South Wales, Australia of adult client registrations (aged 15 years and over) for community nursing care in an area health service found the four interventions most frequently received from community nurses were clinical management, assessment, support and counseling, and drug administration (Kemp et al., 2005). Another study in Victoria of services provided by RALLY Healthcare identified wound care, diabetes care, catheter care and medication administration as their top four (Royal District Nursing Service [RDNS], 2004). There are obviously differences in categorising community nursing care across these recent Australian studies suggesting some common system of categorising community nursing activity is required. Such a system could empower community nurses to demonstrate more reliably their contribution to health care services specifically the nature of the care of clients with chronic and complex conditions. Further, if the workload of the community nurse is to be understood for planning purposes the variance in dependency of community based clients with chronic and complex conditions also needs to be measured. The care received by clients was strongly clinically based involving assessment, intervention of pathology and treatment. Community nurses only formally reported providing education for a very small percentage of occasions of service (0.2%) though it is possible that nurses did provide education at other occasions of service as part of nursing care, for example medications. Hence this minimal educational support as shown in the data may be an artifact of reporting. However, the importance of education with supportive interventions has had positive effects associated with increases in clients knowledge, skills and confidence in managing their chronic conditions (Norris, Engelgau & Narayan, 2001; Von Korff, Gruman, Schaefer, Curry & Wagner, 1997); and the quality of care has been improved for clients with chronic and complex conditions with the implementation of a health-oriented approach. (Browne et al., 1999; Kendig, Browning & Young, 2000; Wagner, 2001). Hence, community nursing services for this client group should be health-oriented (Wagner, 2001) addressing well being and having health promotion activities as a key component of its service (MacDonald, 1991; Runciman, Atson, McIntosh & Tolson, 2006) The current model of community nursing in the area health service of this study consists mainly of two community-based teams of nurses not specifically educated to care for clients that are chronic and complex. However, some specialist nurses are available to augment care, for example palliative care, aged care and pyschogeriatric. The palliative care specialist nurse was found to be providing the most specialised occasions of service to these clients who have chronic and complex conditions. According to MacDonald (1991) an essential component of a service are staff qualifications and experience. It is not clear how well prepared community nurses are for their role of caring for clients with chronic and complex conditions. The adequate educational and clinical preparation of community nurses is essential to ensure chronic and complex community based clients receive care reflective of best practice and attain their optimal health outcomes. At present the age group 60-79 years consumes the highest percentage of care followed by the 80 and over age group. Over time the age group 80 years and over is expected to increase. It is predicted by 2011 the female population 85 years and over will be double the male population (AIHW, 2002) and by 2016 one in four Australians will be aged 80 and over (Commonwealth Department of Health and Ageing [DOHA], 2000). According to Courtney, Abbey and Abbey (2004) the need for care increases significantly with age and in older age groups disabling diseases are higher. Such clients have complex needs and nursing care is important (Brooke & Kendig, 2004). This will challenge existing services that need to prepare to meet this demand in the future. Health care to this client group is and will continue to remain at the forefront of health service delivery with no place for uncertainty, ambiguity and confusion in and around this service. Such care will depend on strong leadership, enhancements to service organisation, and sufficient clinical expertise to result in productive interactions between nurses, clients and carers that make a difference. The community nurse s role in risk reduction, the major platform for action, strategised within the tiered care system is occurring within service provision. Clients with chronic and complex conditions 24 Collegian Vol 14 No 4 2007

in this area health service have clearly articulated nurses were enabling them to avoid hospitalization (Cioffi, Wilkes, Warne, Harrison, & Vonu-Boriceanu, 2004). The risk reduction approach is gaining momentum and community nurses have a key role in the holistic individualized care that multidisciplinary teams deliver to these clients. Further clarification of the role of the community nurse in a multidisciplinary team for clients with chronic and complex conditions is needed to ensure optimal care of these clients. Further as information about services is critical to planning and effective care the availability of data is essential (National Public Health Partnership, 2001). The information available on the database used in this study in the form of occasions of service is a beginning point to the development of an effective clinical information system. According to Wagner, Bennett, Austin, Greene, Schaefer, & Von Korff (2005) client centred care requires the care team to collect clinical information about patients, categorise it in a useful way and be able to access it readily. The linkage of the system within and between services provided in the community health and acute care sectors could facilitate communications of benefit to both health professionals and their clients. In conclusion, the scope of care that community nurses provide to clients with chronic and complex conditions has been identified. However, an in-depth appreciation of the care clients received is limited by the data able to be accessed from the client information system. The care that is identified suggests acute care is being provided at the expense of a more health-oriented approach to care including health education, promotion and a more holistic approach to well being of clients. Limitations of the study Study limitations include the breadth of some nursing care categories, for example assessment had 57 subcategories and direct care activity had 56 subcategories. More specific categorisation of nursing care within these two categories for example is essential to gain increased insight into community nursing activities. The other major limitation of the study was the database only provided nursing care in occasions of service and not from the perspective of care received by each client. This prohibits to some degree interpretations of the care required by average clients with certain characteristics that can be most useful for designing nursing care delivery systems in communities. Recommendations The nursing care this group has been shown to receive requires carefully appraised for its quality including its adequacy, comprehensiveness and focus on self-management and health-orientation. The information database needs to be revised to enable key information to be captured more comprehensively so information is available from which to determine resource requirements, plan service upgrades and implement care improvements. Research into the role of the community nurse in a multidisciplinary team needs clarification to ensure effectiveness and it is essential community nurses are supported to acquire the additional knowledge and skills to provide comprehensive health-oriented care to chronic and complex clients. References Australian Institute of Health and Welfare. (2002). Older Australia at a glance. Australian Institute of Health and Welfare and Office of Aged Commonwealth Department of Health and Family Services. Canberra: Commonwealth of Australia. Australian Institute of Health and Welfare. (2004). Australia s health 2004. Canberra: Australian Institute of Health and Welfare. Brooke, L., & Kendig, H. (2004). Understanding community nursing for older individuals and carers. In R. Nay, & S. Garrat (Eds.), Nursing older people. Issues and innovations. (2 nd ed., pp. 103-119). Sydney: Churchill Livingstone. Browne, G., Roberts, J., Gafni, A., Byrne, C., Weir, R., Majumdar, B., & Wattt, S. (1999). Economic evaluations of community based care: Lessons from twelve studies in Ontario. Journal of Evaluation in Clinical Practice, 5, 367-385. Chinn, P., & Kramer, M. (1991). Theory & nursing: A systematic approach (3 rd ed.). St Louis: Mosby. Cioffi, J., Wilkes, L., Warne, B., Harrison, K., & Vonu-Boriceanu, O. (2004). Community nursing services for chronic and complex clients: a descriptive study. An unpublished report. Commonwealth Department of Health and Ageing. (2000). National strategy for an ageing Australia. Healthy ageing discussion paper, highlights sheet. Retrieved July 12, 2003, from http://www.ageing.health.gov.au/ofoa/posageing/hahilite.htm Courtney, M., Abbey, B., & Abbey, J. (2004). Funding and policy in residential care in Australia. In R. Nay, & S. Garrat (Eds.), Nursing older people. Issues and innovations (2 nd ed., pp. 3-30). Sydney: Churchill Livingstone. Hutt, R., Rosen, R., & McCauley, J. (2004). Case-managing long-term conditions. What impact does it have in the treatment of older people? London: King s Fund. Kemp, L. A., Harris, E., & Comino, E. J. (2005). Changes to community nursing in Australia: 1995-2000. Journal of Advanced Nursing, 49, 307-314. Kendig, H., Browning, C., & Young, A. (2000). Impacts of illness and disability on the well being of older people. Disability & Rehabilitation, 22, 15-22. Krause, C., Jones, C., Joyce, S., Kuhn, M., Murphy, L., Krause, C., Boan, B., & Lucas, D. (2006) The impact of a multidisciplinary approach on improving the health and quality of care of individuals dealing with multiple chronic conditions. American Journal of Orthopsychiatry, 76, 109-114. MacDonald, V. (1991). Home is where the heart is. 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Journal of Gerontology Series A: Biological Sciences & Medical Sciences, 59, 590-597. Royal District Nursing Service. (2004). RALLY health care client satisfaction survey, Inside, Quarterly news, Autumn. Runciman, P., Atson, H., McIntosh, J., & Tolson, D. (2006). Community nurses health promotion work with older people. Journal of Advanced Nursing, 55, 46-57. SPSS. (2003). SPSS 12.0.1 for Windows. SPSS Inc [Computer Software]. Von Korff, M., Gruman, J., Schaefer, J., Curry, S., & Wagner, E. (1997). Collaborative management of chronic illness. Annals of Internal Medicine, 127, 1097-1102. Wagner, E. (2001). Quality improvement in chronic illness: A collaborative approach. Joint Commission on Quality Improvement, 27, 63-80. Wagner, E. (2004). Chronic disease care. British Medical Journal, 328, 177-178. Wagner, E., Bennett, M., Austin, T., Greene, M., Schaefer, K., & Von Korff, S. (2005). Finding common ground: Patient-centredness and evidence based chronic illness care. The Journal of Alternative and Complementary Medicine, 11, Supplement 1 pp. S7-S15. Williams, A., & Botti, M. (2002). Issues concerning the ongoing care of patients with comorbidities in acute care and postdischarge in Australia: A literature review. Journal of Advanced Nursing, 40, 131-140. Collegian Vol 14 No 4 2007 25