Chapter 19 Self-management
Introduction
The concept of self-management, including active involvement in decisions about care and shared responsibility with professionals has a confirmed place for many individuals living with the consequences of a long-term neurological condition (Department of Health (DoH), 2005b). Self-management not only involves the skills to cope with medical needs, such as dealing with self-catheterization or walking to reduce spasticity and stiffness, but also includes the emotional and social adjustments required by individuals over time. Although there is research on stages of adjustment and the development of self-management skills, this always has to be taken in the context of the nature of the neurological condition, which may be sudden as in the case of a spinal cord injury (see Ch. 4) or unpredictable in the case of multiple sclerosis (MS) (see Ch. 5).
Individuals and their families are often resourceful in the face of the challenges presented to them by their disability and frequently find solutions without the help of clinicians. However, for many individuals, the experience of a new neurological event such as stroke (see Ch. 2) or a changing disability such as MS requires guidance and support from a health professional. Yet the way in which the support is given, could have a profound effect on how successful a person is at being able to self-manage. As rehabilitation professionals, we have the opportunity to enable individuals to take control of their symptoms and develop a range of skills and strategies to live in an optimum way with their condition. We also have the potential to disempower and inhibit individuals’ abilities to develop self-management skills so that they become more reliant on our help and expertise. To facilitate a departure from help and reliance on an ‘expert physiotherapy clinician’ toward a more collaborative approach which will sustain successful self-management is not an easy or straightforward process.
The evidence relating to successful self-management programmes, demonstrates the value of an interactive process between the heath professional and individual with a focus on shared decision-making and problem-solving (Newman et al., 2004). This would suggest that success would not be achieved through such actions of the therapists as:
Self-management: what is it and why now?
In definitive texts on self-management there are often assertions concerning changing demographics associated with ageing in the developed world. As population death rates decline, more people are likely to be living with the consequences and challenges of a long-term condition (LTC); as such, demand on health care is likely to grow. Sceptics have suggested that the economic pressures associated with large numbers of people living longer and requiring health care drive the advancement and popularity of self-management programmes. In the UK, people with a chronic disease or disability account for one in three of the total population; people with neurological conditions account for 20% of all hospital admissions and such conditions are the third most common reason for seeing a general practitioner (DoH, 2005b). Individuals with neurological conditions will continue to be intensive users of health-care resources and this number is likely to grow, considering the number of neurological conditions that are more prevalent amongst people over 65 years, e.g. stroke.
In the UK, the NHS Improvement Plan (Department of Health, 2004) highlighted the growing concern about the increasing number of people living with a chronic condition and proposed three levels of management. The NHS Long Term Condition Model included at the ‘top level’ case management for people with more complex (including neurological) conditions. A new form of specialist clinician was introduced to deliver case management to those with complex needs. At the second level, the plan offered disease management for those with specific conditions, e.g. those individuals requiring effective medication alongside care. Finally, at the third level, and thought to constitute 60–70% of the overall patient population, are those individuals that could be helped by self-management programmes, such as those using trained lay leaders to deliver generic group-based programmes, e.g. the Expert Patient Programme (EPP) (DoH, 2001).
Defining self-management
Many definitions of self-management reflect both the medical and social aspects of living with and managing a long-term chronic condition. One commonly used definition is that given by Barlow et al. (2002) referring to self-management as:
Somewhat confusingly, the term ‘self-management’ is often used interchangeably with ‘self-care’. A comprehensive definition of self-care given by the Department of Health (2005a), shows similarities with Barlow’s definition but with a stronger focus on the medical aspects:
What these definitions both suggest is that self-management means greater responsibility on the part of the person for their own ongoing and, possibly, changing health needs. Self-management is seen as one aspect of the move towards encouraging patients to play a more active role in their own health, and aligns with other health-care policy in the UK, which emphasizes patient-centred care and engagement (Coulter & Ellins, 2006). But for individuals to become engaged in self-management practices it could be argued that there needs to be a greater concordance with the type of treatment being provided by health-care professionals. The transition towards successful self-management may also happen at different time points for each person; physiotherapists will therefore need to be able to assess an individual’s readiness to take on more responsibility. This flexibility may be difficult when the amount of treatment and timing is pre-determined. More involvement, self responsibility and shared decision-making may be key components of self-management but, in some cases, organizations and services are unable to adapt and respond to what is needed.
A focused ethnographic study of individuals attending a stroke club revealed that individualized needs were not addressed during the rehabilitation process and that services were insufficient to ease the transition to community living (Sabari et al., 2000). This suggests that therapy services were not adequately preparing individuals for the transition from regular treatment to self-management, a concern echoed by other authors (Cott et al., 2007; Rittman et al., 2004).
Experts on self-management may not fully agree on all its components, but most agree on what it is not. Self-management is not simply providing the information and expecting the patient to get on with it, nor can we expect patients to adjust to a new or changing condition at the same rates or time points. An individual’s involvement in self-management is (a) likely to fluctuate over time and (b) will depend on several factors (for example; the stage of life when a person receives their diagnosis, and knowledge that a neurological condition is only one part of a person’s life). This will doubtless influence how much time, priority and importance a person gives to self-management – indeed, what they can or want to do. People’s response to self-management is therefore unique (Corben & Rosen, 2005).
Self-management has also been defined according to a specified outcome, e.g. practicing specific health behaviours. It may be inhaler management in the case of people with asthma or controlling diet in people with diabetes (Newman et al., 2004). But the specific health behaviours needed to self-manage a neurological condition are more difficult to specify and generalize. This may be one reason why cohorts involved in research on generic self-management programmes rarely include participants with a neurological condition such as stroke.
Kate Lorig, the founder of a generic group-based programme known as the Chronic Disease Self-management Programme (CDSP), described self-management as distinct from medical care and involving the ‘learning and practicing skills necessary to carry an active and emotionally satisfying life in the face of a chronic condition’ (Lorig, 1993). What this definition adds is the aspect of learning, with the unique difference between self-management programmes and educational programmes being the need to facilitate behaviour change through different means. Clearly, much of health policy on self-management shows an emphasis on partnership and empowerment and this approach has been cited as one of the key components of a person-centred health service (DoH, 2000). But it has been argued that if self-management programmes are provided in clinical settings by health professionals, then the balance of power still lays with the professional not the individual (Wilson et al., 2007). It has also been suggested that implicit in many self-management programmes is an assumption that the best regimes are those suggested by a clinician and that the best outcome is achieved through optimum compliance (Kendall & Rogers, 2007).
Do therapists and patients see a good outcome in the same way, and does it always involve the individual adhering to advice and following treatment plans? Maclean et al. (2002) found that stroke patients perceived by health professionals to be highly motivated were more compliant with the aims and expectations of rehabilitation and more likely to understand and follow the advice of professionals. However, some patients perceived to have low motivation described the mixed messages given by therapists in discouraging their individual efforts. This raises some concerns about which patient is doing better and is more likely to learn the skills of self-management; the patient not complying with treatment and trying activities independently or the patient following advice and complying with rehabilitation (Maclean et al., 2002).
If an individual feels obliged to take part in and comply with a specified treatment strategy is this compliance a successful outcome? This could create a contradiction with the new group of self-managers, described as reflexive autonomous individuals and not passively accepting medical advice (Wilson et al., 2007). Against the rather negative predictions of the growing numbers of people living with a LTC likely to need medical care, there is also evidence from a recent survey that the majority of adults living with a LTC are comfortable taking responsibility for their condition (IPsos MORI for Department of Health, 2009). Again, it is worth remembering that many individuals self-manage without the support of a clinician or self-management training:
Lee, a 77-year-old stroke survivor, lives at home with his wife and no longer receives regular physiotherapy. He described his paretic leg as being unpredictable and no longer under his control, but he dealt with this by ‘learning not to panic, and rely so much on my powerful stronger leg’. He achieved this by setting small tasks where the likelihood of success was high ‘giving my leg a chance to succeed’ (Jones, 2004). Self-management strategies in Lee’s case, involve decision-making, setting targets, and reflecting on progress. He explained, ‘Doing more walking at home is my goal, you must have a goal, and have measures which you can check against which are fairly objective, and I do roughly do that, how many yards I have walked each day, and I use note books and diaries to record how I am doing’.
The key to incorporating shared decision-making into rehabilitation involves inviting the individual to participate in the decision-making and the problem-solving, and not asking the individual to comply with an exercise or treatment. One model used an approach in which the care was a question of gaining insight into the patient decisions rather than the opposite (Zoffman et al., 2008). Ellis-Hill has also highlighted the importance of the shared discourse between the therapist and patient, to facilitate self-discovery and problem-solving on behalf of the patient. In this way, the therapist is acting more as a guide or coach, rather than an expert. Using this model, the balance of power between professionals and patients is recognized. Ellis-Hill and colleagues developed their Life Thread Model (2008), based on narrative theory and focusing on interpersonal relationships. The model includes:
Self-management is not new
The paradox of this growing interest in self-management is the knowledge that it is not a new phenomenon. Individuals have always found ways of coping with their chronic condition, showing resourcefulness both at an individual and community level. Sociologists such as Mike Bury and others have highlighted that models of coping with a chronic long-term condition, based on resilience and self-responsibility, have existed for many decades. They also argue that health-care professionals would make a case that they have long promoted self-management (Bury et al., 2005). There are a great many examples of how people with a neurological condition self-manage, not only at a personal level but also at a more collective/societal level. Peer support is one way that people with the same neurological condition can exchange ideas, experiences and gain advice. Peer support can consist of groups held in local communities, such as a stroke club, and there is a growth of online support groups, particularly when the neurological condition is less common and individuals are not readily able to meet. A good example of this is the Virtual Ataxia Group (Table 19.1).
Table 19.1 The Virtual Ataxia Group
| Who for? | What is it? |
|---|---|
| People with hereditary or acquired ataxia | A group for people who have ataxia but may live in rural areas and cannot access local groups There are chat sessions online, and all members are encouraged to take an active role in the group Provides peer support and a forum for people with ataxia to exchange ideas, experiences and solutions about living with Ataxia http://www.ataxia.org.uk/page.builder/virtual_branch.html |
The starting point for many individuals living with a neurological condition may not always be a medical issue, such as impairment. Social isolation, family life, work and adjustment to the changes over time may be a far more important influence on self-management (Kendall & Rogers, 2007). If we are to integrate self-management principles into therapy programmes for people with neurological conditions, then an agreed definition of what self-management is and what it is not is needed first before exploring the key components and specific interventions. Furthermore, as a therapy profession providing a service for patients with many different neurological conditions, should we also question whether our start point always needs to be about health? After stroke, self-management behaviours are often promoted to prevent a second event and reduce risk factors through strategies such as increasing activity. But exercise and access to community groups can be challenging for stroke survivors who wish to adopt a healthier lifestyle (Rimmer et al., 2008). In this way, social isolation from an inaccessible environment may be more of a barrier to successful self-management. The role in the community played by both formal and informal self-help activities, such as stroke clubs, is also a vital aspect of a more collective approach to self-management (Ch’ng et al., 2008). But these groups are often not accessed by individuals with restricted mobility or communication impairments, or minority and ethnic groups, such as populations from Southern Asia (Davidson et al., 2008).
Individual responses to self-management programmes: theory and research
Understanding responses to neurological disability
Why is it important to gain more understanding of motivation, fears and beliefs? Before examining some of the theories underpinning self-management programmes, it is worth reviewing some of the findings from qualitative studies that have explored these concepts. Taking the experience of stroke as the main example, it could be argued that confidence and beliefs about self-management will be based on a diverse range of events occurring in the post stroke period. These may be personal experiences as a result of a change in independence and life circumstances, but equally could be shaped by external factors such as the environment and structure of rehabilitation and the nature of interactions with professionals and family (von Koch et al., 1998).
Fear and uncertainty perceived by individuals is also well documented in studies exploring the early poststroke period (Hafsteindóttir & Grypdonk, 1997; Robinson-Smith, 2002). Anxiety about bringing on a second stroke, or feeling out of control, may act as a barrier to setting goals and taking action. The sudden loss of independence and changes in identity associated with acute stroke also heighten individual concerns about potential losses and the restriction of future roles (Bendz, 2003; Faircloth et al., 2004). This early period of instability and uncertainty post stroke may have a profound influence on forming judgements and beliefs about the future. In addition, the high levels of depression and anxiety experienced by stroke survivors may be compounded by these feelings of dependency and loss of control (Hackett et al., 2005). Some of the practices in early stroke care can reinforce feelings of helplessness and dependency which would not be conducive to developing self-management skills (Andrews & Stewart, 1979; von Koch et al., 2000).
Another common theme in the literature is that individuals may not always follow well-defined stages of adjustment after stroke, and personal ‘readiness’ to take on concepts of self-management and self-responsibility may not coincide with the timing of rehabilitation. The perception of ‘recovery’ has been found to be personal to each individual taking into account a range of other factors such as age and previous health status (Faircloth et al., 2004). Some authors prefer to use the term ‘biographical flow’ to describe how individuals experience the stroke event in the context of their everyday lives. Stroke is not necessarily seen as a catastrophe, but part of a person’s ongoing life narrative with many individuals describing an implicit expectation about continuing to do the things that were done before the stroke (Faircloth et al., 2004).
Benchmarking used by individuals to measure their own progress and adjustment to stroke is also a common finding in qualitative research, and the recovery experience is often constructed by individuals in relation to the practical reality of living with a stroke on a daily basis (Dowswell et al., 2000; Gubrium et al., 2003; Jones et al., 2007). The knowledge and understanding of rehabilitation professionals about individual’s incentives and motivations relating to personal goals could also increase the likelihood of developing strategies and confidence to succeed. Higher levels of tenacious goal pursuit and flexible goal adjustment at 5 months has also been found to be a strong predictor of higher levels of quality of life at 12 months post stroke (Darlington et al., 2007).
Stroke is usually a sudden onset event, but with neurological conditions such as MS, the onset is more gradual but potentially less predictable (see Ch. 5). For many, diagnosis is a protracted experience with the challenge of making sense of the long-term implications of living with a changeable chronic condition. Focus groups carried out with people diagnosed with MS for 5 years or more to explore personal narratives and self-management strategies highlighted the key differences between the early and later stage experiences. The need to get a named diagnosis, lack of psychosocial support and concerns about the consequences in lifestyle dominated the early stages, along with stress and fear about the unpredictability and coping with major challenges. Nevertheless, after a period of time, individuals developed more proactive attitudes and strategies, gaining more knowledge about their own disease progression and accessing formal and informal support networks (Malcomson et al., 2008).
What these qualitative studies tell us is that whilst living with a neurological condition, individuals will experience a number of beliefs, emotional responses and barriers that could influence the successful rehabilitation and self-management (see Table 19.2).
Table 19.2 Factors influencing rehabilitation and self-management
| Belief/behaviour |
| Fear and uncertainty about a second event or dependency on others |
| Worry about unpredictability of disease |
| Recovery is personal and perceived within a personal narrative |
| Concerns for the future challenges |
| Feelings of discontinuity with previous life |
| Personal benchmarks which may not match therapy goals |
| Importance of hope and the possibility of further improvement |
(Sabari et al., 2000; Rittman et al., 2004; Jones et al., 2007; Bendz, 2003.)
Social Cognitive Theory and self-efficacy
What then is the best way of helping an individual to learn more about their own beliefs and responses to rehabilitation? Psychological theories provide a framework for understanding human behaviour, and many self-management interventions are now developed on the basis of different theories. The most commonly cited in the development of self-management programmes is Social Cognitive Theory (SCT), in which an individual’s belief in their own capability to produce a change in a specific behaviour (self-efficacy) is said to be critical to the success (Bandura, 1989; Bandura, 1997). Self-efficacy is a construct introduced by Bandura (1997), and has been defined as ‘people’s beliefs about their capabilities to produce designated levels of performance that exercise influence over events that affect their lives’ (Bandura, 1994, pp. 71). Self-efficacy beliefs can determine how people feel, think, motivate themselves and behave with regards to their health. For example, self-efficacy influences motivation and health behaviours, by determining the goals people set, how much effort they invest in achieving those goals, and their resilience when faced with difficulties or failure (Dixon et al., 2007). Individuals with strong self-efficacy tend to select challenging goals, and approach difficult tasks as challenges to overcome, rather than as threats to avoid. In the face of failure, such individuals may heighten and sustain their efforts, quickly recover their sense of efficacy, and even attribute failure to insufficient effort or deficient knowledge and skills that can be acquired (Bandura, 1994).
There are four main sources of self-efficacy (Bandura, 1997):
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