Promoting self-management and patient independence

Transcription

1 CONTINUING PROFESSIONAL DEVELOPMENT By reading this article and writing a practice profile, you can gain a certificate of learning. You have up to a year to send in your practice profile. Guidelines on how to write and submit a profile are featured at the end of this article. Promoting self-management and patient independence Promoting self-management and patient independence pages Multiple choice questions and submission instructions page 54 Practice profile assessment guide page 56 NS268 Hughes SA (2004) Promoting self-management and patient independence. Nursing Standard. 19, 10, Date of acceptance: April Aim and intended learning outcomes The aim of this article is to guide the reader to reflect on the factors affecting patient independence and the nurse s role in encouraging patients to manage their own care. The article explores the concept of the expert patient (Department of Health (DoH) 2001), self-management and empowerment (Cooper 2001). It focuses on the importance of understanding the patient s agenda and patient-centred rather than service-led care. After reading this article, you should be able to: Define independence, the expert patient and self-management. Explain the concept of power in relation to health care, the nurse-patient relationship and current political perspectives. Discuss the factors affecting health behaviour and the importance of understanding the patient s needs and beliefs. Identify skills required in coaching a patient towards independence and/or self-management. Reflect on your own practice in relation to communication, understanding of power and promoting independence. Independence and autonomy Roy (1976) described the nature of independence as the ability to achieve, make decisions and initiate actions by oneself. Her adaptation model for nursing describes the balance between dependence and independence and stresses the importance of being able to stand alone while still being able to share and live with others (Roy 1976). The Collins Concise Dictionary (1989) defines independence as freedom from control in action or not being dependent on anything for function; autonomy is defined as having the freedom to determine or choose one s actions. Davies et al (1997) suggest that independence is associated with the ability to perform activities of daily living unaided, but they emphasise that an autonomous person might choose to be dependent for several reasons; for example, he or she might need companionship rather than care. Orem (1980) focuses on self-care, placing emphasis on autonomy and the promotion of patients ability to meet their own care needs wherever possible. The ability to be independent may also affect the degree of autonomy a person is given to be independent; for example, a person who has learning difficulties may wish to decline regular screening, but his or her choice and autonomy may be affected by the carer s perception of his or her understanding of the need for screening. Informed consent is not discussed in this article but is an important part of any healthcare intervention. TIME OUT 1 Consider a patient in your area of practice who was dependent on others for care and support. What made that person dependent physically, psychologically and/or socially? For example, was he or she mechanically ventilated, coping with a chronic disease or disabled and receiving community support? Did the patient have extensive needs, was he or she patient physically or emotionally vulnerable or unable to cope? Did the patient believe that he or she could or would be able to manage his or her health and/or social needs? In brief Author Sarah A Hughes RN, RSCN, BA(Hons), DN, is a holistic health coach and an associate lecturer for the Open University Pre-registration Nursing Programme. sarahlifecoach@waitrose.com Summary This article explains the importance of patient-centred care, and explores the factors affecting self-management and patient independence. Key words Expert patients Patient-centred care Patients: empowerment These key words are based on subject headings from the British Nursing Index. This article has been subject to double-blind review. Online archive For related articles visit our online archive at: and search using the key words above. november 17/vol19/no10/2004 nursing standard 47

2 Box 1. A vision of success More patients with chronic disease improve, remain stable or deteriorate more slowly More patients manage specific aspects of their condition, for example, pain Patients are less severely incapacitated by fatigue, sleep deprivation, low levels of energy and the emotional consequences of illness Patients are effective in accessing health and social services appropriately, and gaining and retaining employment More patients are well informed about their condition and medication, feel empowered in their relationship with healthcare professionals and have higher self-esteem People with chronic diseases contribute their skills and insights for further improvement of services (DoH 2001) Promoting independence Promoting and encouraging patient independence in health care has been defined as improving health: advancing, supporting, encouraging and placing [health] higher on personal and public agendas (Ewles and Simnett 1992). Patients are expected to take more responsibility for their own health (Davies et al 1997). The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century (DoH 2001) a programme designed to empower people with long-term medical conditions such as asthma, diabetes and arthritis recommends redefining the patient s role, by encouraging patients to take more control of their health (Box 1). However, there is conflict as to whether this is a result of the need to make effective use of healthcare resources or a shift in the autonomy of patients (Wilson 2001). The incidence of chronic diseases is rising in association with the ageing population, and affects about two-thirds of people over the age of 75, and mental health problems such as depression are also increasing (DoH 2001). Gray (2003) states that health and health care in Europe will increasingly concern human behaviour and its modification. Patient choice is another important issue. The themes that have emerged from the National Consultation on the Expansion of Choice include professionalpatient partnerships and the quality of this relationship, individuality and the entire episode of care, information and equity and access to services (Grant 2003). TIME OUT 2 Ben aged 19 has been told he has diabetes mellitus. He has a low income, a wife and two children and lives with his mother, who also has diabetes. What issues do you think will affect Ben s choice and his ability to manage his condition independently? Expert patients and self-management Cooper and Clark (1999) defined the term selfmanagement as a structured way of giving a patient skills and knowledge to manage a particular medical condition. This could also include managing the emotional and social issues surrounding longterm illness. Expert patient initiatives seek to empower those with chronic health needs to take control of their own care but also recognise the importance of ongoing professional support and expertise in maintaining that independence. The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century (DoH 2001) aims to further develop partnership between patients and professionals. It identifies the patient as an expert in his or her own experience who has coping strategies to manage long-term illness, working in partnership with the professionals involved in his or her care, who have expertise and knowledge. The Living with Long-term Illness (Lill) project was funded by the DoH, the King s Fund and Glaxo- SmithKline (Box 2). This project aimed to evaluate lay-led self-management interventions, based on American self-management programmes (Lorig and Holman 1993) to develop a chronic disease selfmanagement programme (CDSMP) (Cooper 2001). These self-management programmes were delivered to patients with special conditions such as arthritis and depression, during six weekly sessions of two-and-a-half hours. They focused on drug and symptom management, psychosocial consequences, lifestyle, social support, communication and other strategies, for example, career planning. Many of the organisations involved in the project contributed to the work of the task force. The pilot phase of the project is currently under way, and is evaluating local projects. The task force has proposed that the lay-led self-management programmes are incorporated into mainstream NHS services by Barlow et al (2000) suggests that self-management approaches produce better outcomes than other more traditional approaches. Partnership is cited by Cooper (2001) as a key component in the successful management of long-term illness. Selfdevelopment programmes aim to encourage or coach patients to manage their own care, by supporting and influencing health behaviour and increasing knowledge of specific aspects of care, for example, medication, pain and symptom control. The lay-led programmes put each member of the group on an equal power base, as participants often have different health issues, and concentrates on the participants progress in managing their care (Cooper 2001). The self-care model for nursing is not a new concept. Orem (1980) describes how nursing can help people to meet self-care needs using an educative or supportive role, teaching and guiding in a supportive environment. Orem (1980) developed a model based on self-care requisites (Box 3), that is all people need to balance self-care demands and their ability to meet those needs to optimise health. She describes how illness, life cycle changes and the environment, for example, poor living conditions and deprivation could affect a person s ability to selfcare, resulting in a self-care deficit. According to Orem (1980), the aims of nursing are to reduce selfcare demands, for example, the need to carry out personal care such as hygiene, to increase the patient s (carer s) ability to care for him or herself and to give care directly if the patient is not able to do so. One criticism of this model is that, although it is needs-based, it focuses on illness rather than the achievement of a wider perspective on health. Although the CDSMP is based on a medical paradigm, it aims to develop five core self-management skills for life: 48 nursing standard november 17/vol19/no10/2004

3 Problem solving. Decision making. Resource use. Effective partnerships. Taking action. Nurses are in a position to offer holistic support not only to patients who are becoming more independent and self-managing but also to those who are difficult to reach. Every contact with a patient is an opportunity to promote self-management in care and to build trust and partnership. Issues surrounding power and control in the nurse-patient relationship must be fully understood to support and empower the patient in this process. TIME OUT 3 What aspects of self-care do you think Ben would like to address? Consider what skills he would need to manage his life with diabetes. Empowerment Gilbert (1995) suggests that the term empowerment is used frequently in the health professions but that the concept of power is little understood although it is central to nursing practice. The practitioner holds power in so far as the patient approaches him or her for help, information and support, and society places great value on this role. However, patients expectations are changing, with the internet providing easy access to information and this could be perceived as a threat to the practitioner s sense of power. Foucault (1973) suggested that society values people who are productive in the economy, thus giving practitioners power in their ability to help someone to become able and to maintain the population s health. Now that the government is asking patients to become their own experts, how will this effect the perceived power of practitioners and will it cause them to use other aspects of power? Foucault (1973) also discusses the power of the institutions and practices in which practitioners work and their role as gatekeepers to other healthcare resources. In empowering patients, it is important to understand the power of the healthcare economy, consumerism and its place in the nurse-patient relationship. Buchmann (1997) advocates the use of referent power, that is, benevolence and caring, and acting as a frame of reference for another person. He describes the importance of helping patients to increase their knowledge to attain a level of expert power, increasing their self-efficacy. Nine attributes of the nurse-patient relationship using referent power are outlined (Box 4). If patients are to take more responsibility or feel more empowered, they need to feel that they have the power to change their behaviour (self-efficacy) and that it is in their best interests to do so. However, Box 2. Living with long-term illness (Lill) project September 1998 to February 2001 Aimed to: Increase knowledge about lay-led self-management programmes and to increase the number of programmes available Create a self-management information sharing network The project was developed using a well-researched patient education intervention that used the experiences of people living with long-term illness as its starting point. Run in the community setting, it was delivered by volunteer lay tutors, all of whom were living with a long-term illness (Cooper 2001) Box 3. Orem s self-care requisites Maintenance of a sufficient intake of air, water and food Provision of care associated with the elimination of body waste Maintenance of a balance between activity and rest Maintenance of a balance between solitude and social interaction Prevention of hazards to human life, human functioning and human wellbeing Promotion of human functioning and development in social groups in accordance with human potential (Orem 1980) some patients may not choose to take responsibility for their health and professionals need to value their right to choose. The patient needs to grant power to the relationship, rather than the professional (Figure 1), as granting power to other individuals will dilute the patient s own power to change and move forward. The power within the nursepatient relationship should serve the patient and his or her health agenda (Whitworth et al 1998). Self-efficacy, locus of control and compliance Self-efficacy, locus of control and compliance are important components of patient independence, and the nurse needs to understand how these effect individual patients. Bandura (1977) describes selfefficacy as a person s belief in his or her ability to accomplish a given task. Perceived capability influences people s choices in their environment and behaviour, and will dictate whether they will avoid a situation that they feel will place them outside their capability, or increase persistence and effort towards a goal that they feel is achievable. In a study designed to measure self-efficacy, Anderson et al (1995) found that those patients with higher levels of self-efficacy reported less intense pain, increased perception of control, less emotional distress and higher activity levels. Locus of control concerns the relationship perceived by a patient between actions and their impact on outcomes, that is, belief about whether outcomes result from his or her actions or behaviour november 17/vol19/no10/2004 nursing standard 49

4 Box 4. Referent power in the nurse-patient relationship Acceptance Benevolence Building a sense of personal responsibility Gaining patient commitment Including norms of a respected secondary group Maintaining positive regard Planning for the termination of care from the outset Selective positive feedback Self-disclosure (Buchmann 1997) Figure 1. The nurse-patient relationship (internal) or occur because of external factors. Selfefficacy relates to whether the patient believes he or she is able to produce the desired action (Maibach and Murphy 1995). Compliance is the willingness to follow or consent to the wishes of another person (Buchmann 1997). To promote independence or self-management, the expert patient initiative suggests that concordance is more appropriate (DoH 2001) (Box 5). This raises the question: should patients be compliant with a plan of treatment that they did not contribute to equally, or should we, as health professionals, be compliant to the needs of patients? TIME OUT 4 Consider how you view the nursepatient relationship, outlining your values and beliefs. What factors would be important in building an effective relationship with Ben? Health and healthy behaviour The American Holistic Health Association (2003) describes optimum health as the achievement of wellness, rather than curing illness, balancing the whole person physically, emotionally, mentally, and spiritually. This is an ongoing process, which integrates all aspects of life. Our belief system is built on experiences, feedback from other people and the culture in which we live (Rogers 1951). It affects the way we view our environment and, more importantly, how we view ourselves. If the patient does not feel his or her diet needs to be adjusted, or that he or she will be able to maintain particular health behaviours, it is less likely he or she will follow that plan of care independently. Research on orthopaedic patients showed that patients often reflect on aspects of care that healthcare staff might not have considered problematic (Edwards 2003). For example, one patient wanted to know why she needed to have a general anaesthetic before she would consent to surgery. Only the patient (or carer) will know the realities of his or her lifestyle, what aspects of health are out of balance and where he or she may require help. It is important for the nurse and patient to Nurse-patient relationship explore what the patient wants and expects to achieve in relation to health and wellbeing. Culture and communication also have an impact on health in relation to health beliefs and understanding. Roger s (1975) motivation theory describes four factors affecting health behaviour: severity, susceptibility, response and self-efficacy. Many years later he added an additional factor, which was fear (an emotional response) (Rogers 1983). How a person thinks a disease will affect him or her is determined by his or her previous knowledge or experience of the severity of the disease as well as fear of the consequences of having that disease (threat appraisal). Belief that a change would improve coping strategies (response effectiveness) and that a patient has the power to undertake that change (self-efficacy) affects the patient s coping appraisal. Thus a patient s ability to cope is affected by his or her beliefs and experiences, and is influenced by external information. The nurse can support, teach and coach the patient to identify positive beliefs, skills and his or her ability to cope. It is important for the nurse to understand the beliefs, experiences and social network of a patient to help him or her use information and gain support for independent living skills. The Health Belief Model (Rosenstock 1966) suggests that health behaviour is predicted by a similar set of core beliefs relating to susceptibility, severity of illness, costs of changing or carrying out a healthy behaviour, benefits of the new behaviour and cues either internal (symptom) or external (information leaflet) to undertake the behaviour. Understanding a patient s core beliefs can help the nurse to devise ways to offer support. First, information about the disease and consequences of action or non-action can be made specific. Second, evidence can be presented that a specific health behaviour will improve the patient s ability to be more symptom-free, prevent further problems or to be more independent. Third, the patient can be taught to recognise when he or she can influence or take control of his or her care, or when he or she needs to seek help. One of the visions of the expert patient s initiative was that patients with long-term medical conditions should be able to use health resources appropriately (DoH 2001). TIME OUT 5 Ben s mother also has diabetes. She has a history of poor blood glucose control, impaired vision and recently had her leg amputated. How do you think this has affected Ben s beliefs and how it might affect the way in which he views the progress of the condition? Write a plan of care that would support his learning needs. Patient Nurse Promoting core skills for self-management The core skills necessary for self-management are problem solving, decision making, accessing resources, 50 nursing standard november 17/vol19/no10/2004

5 identifying effective partnerships and taking action. The nurse is the key professional in helping patients to develop these skills. Problem solving Kline (2002) suggests that to learn to problem solve people need to be encouraged to think for themselves. The nurse can facilitate this process initially by listening. Effective listening is not passive hearing. It involves close, directed attention, taking notice of what is and is not being said, and interpreting what is heard. Attention Kline (2002) identifies ten elements of a thinking environment that enhance listening (Box 6). Attention is an important skill of an effective listener. The way in which a nurse focuses attention on the patient is key to maintaining equality in the nurse-patient relationship. Rapport, eye contact and body language also reflect the quality of attention being given. Listening with respect and without interruption provides a rich listening environment (Kline 2002). However, there are times when intruding on the patient s dialogue can be important in getting to the real issue in a short time, especially if the patient is stuck in a negative pattern of reflection and action. Impact Listening is an essential skill for nurses to develop. However, it is also important to understand how a nurse s behaviour affects listening. The nurse may choose in which direction to focus the patient, and this can be done by: articulating (paraphrasing), clarifying, providing a meta-view (focusing the big picture), using metaphors, acknowledgement and appreciation. Nursing models and assessment tools, for example, Orem (1980) or Neuman (1980), can be used to focus on what is an issue for the patient. Neuman s (1980) nursing assessment tool focuses on what the patient feels is his or her main problem, how it is affecting his or her life and how he or she coped previously. Orem (1980) gives more structure by providing headings for the patient and nurse for guidance (Box 3). Assessment tools can also be used to identify what problems might arise and to help the patient identify ways and resources in which to address them. Decision making This is an important aspect of problem solving in self-management, as decision making enables the patient to take ongoing action towards maintaining health. The nurse can support the patient in making decisions and learn what other decisions will need to be made in future episodes of ill-health; for example, when to take medication and the consequences if the patient chooses not to take it (Hughes 2003). As a nurse, your duty of care is to ensure the safety of patients (Nursing and Midwifery Council (NMC) 2002). Coaching can make clear the appropriate level of responsibility a patient can take on a skill which is important when working with patients with fluctuating capacity, or with children and young people. The nurse should have a good awareness of his or her ability to assess the competence of patients and carers to maintain patient safety while maximising independence. Resource use Since access to the internet has been widely available, patients have been able to gather information much more easily. It is important that, as health professionals, we teach patients how to get accurate and appropriate information. Written information about an illness and what to do when new problems arise is also invaluable to patients. Patient choice is a part of the current government agenda; nurses can help patients to examine local provision depending on their needs. There are many aspects of life that may be affected by health issues and many care options that could be investigated, depending on the patient s needs and preferences. Current resources available to patients can be explored through discussion, including their intrapersonal (internal coping skills), interpersonal (relationship with others) and extrapersonal (outside support network) skills. Solutions, services and lifestyle information can be found in a variety of settings: the NHS, local authorities and private or voluntary sectors. Effective partnerships One of the visions of the expert patient initiative encompasses the effective use and appropriate accessing of healthcare services (DoH 2001) (Box 1). In the author s experience, a patient is more likely to self-manage his or her care if he or she understands his or her illness, knows his or her limitations and has a good relationship with those (carers, GPs or specialist nurses) who can help when he or she has problems that are outside his or her area of competency. This assumes that the carer or practitioner respects the timeliness of the intervention needed. Problems can then be overcome quickly and self-care can be re-established without loss of confidence. Taking action Coaching is one way of promoting learning and self-management skills (Hughes 2003). In coaching, the two main elements of helping someone to achieve his or her goals are awareness and commitment (Whitmore 2002). The nurse can promote patient awareness through teaching and reflection with the patient, and demonstrate his or her commitment to any care plan. It is the goal setting and the commitment of patient and practitioner to subsequent action, identified in the patient s plan of care, that make the difference in terms of learning and self-management. Supporting expert patients In a study of expert parents, that is, those who competently took on tasks that would usually be undertaken by nurses, caring for children with complex needs, Kirk and Glendinning (2002) describe three dimensions of support that were most appreciated: emotional support, practical help and information. The emotional support involved being there, listening, counselling and promoting self-confidence Box 5. Concordance Concordance is an agreement reached after negotiation between a patient and a healthcare professional that respects the wishes and beliefs of the patient in determining whether, when, and how medication is taken, or care given. Concordance assures the patient of a proactive role in treatment decisions. A central theme in the partnership with the prescriber and pharmacist is an understanding of the patient s beliefs and expectations for the treatment (DoH 2001) Box 6. Elements that are important in creating a listening environment Attention Insightful questioning Equality Appreciation Ease Encouragement Feelings Information Location Diversity (Kline 2002) november 17/vol19/no10/2004 nursing standard 51

6 Further information Long-Term Medical Conditions Alliance (LMCA) Unit 212, 16 Baldwins Gardens, London EC1N 7RJ Telephone: and self-efficacy. Practical help ranged from advocacy and organisation of resources to hands-on care. Resources included aids to independence, medical equipment and services such as home care and meals on wheels. The information dimension encompassed advice and information, teaching and giving feedback, which was perceived as valuable. This helped the parents to increase their knowledge and skills, providing the confidence and determination to work through setbacks. TIME OUT 6 How could you assist Ben in developing self-management skills? What openended questions (see examples) or activities could you use to help him develop confidence and competence? Problem solving: for example, how else might you change your lifestyle? Decision making: for example, what would be important in deciding how much insulin to give? Use of resources: for example, what else do you need? Effective partnerships: for example, who else could help you in managing your diabetes in the long term? Taking action: for example, what will you do this week? TIME OUT 7 What qualities or skills do you think are important in promoting independence? Perform a strengths, weaknesses, opportunities and threats (SWOT) analysis of your skills in relation to promoting independence. Conclusion This article has provided an overview of patient independence, encompassing the concepts of the expert patient and self-management. The power balance in the nurse-patient relationship has been explored and the importance of working in partnership with patients has been discussed. The government has emphasised choice and self-management as important elements in modernising health care. Nurses are in an excellent position to support patients to take up this challenge through listening and reflection, joint problem solving and promoting understanding and learning TIME OUT 8 Now that you have completed the article, you might like to write a practice profile. Guidelines to help you are on page 56. REFERENCES American Holistic Health Association (2003) Wellness from Within: The First Step. Anaheim CA, AHHA. Anderson K et al (1995) Development and initial validation of a scale to measure self-efficacy beliefs in patients with chronic pain. Pain. 63, 1, Bandura A (1977) Self-efficacy: toward a unifying theory of behavioral change. Psychology Review. 84, 2, Barlow J et al (2000) Self-management Literature Review. Coventry, Psychological Research Centre, Coventry University. Buchmann W (1997) Adherence: a matter of self-efficacy and power. Journal of Advanced Nursing. 26, 1, Collins Concise Dictionary (1989) Collins Concise Dictionary. London, Collins. 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Wilson P (2001) A policy analysis of the expert patient in the UK: self-care as an expression of pastoral power? Health and Social Care in the Community. 9, 3, nursing standard november 17/vol19/no10/2004