What influences people to self care?

What influences people to self care? This report was prepared by the self management team at the National Primary Care Research and Development Centre, University of Manchester 1 1 Peter Bower, Tom Blakeman, Anne Kennedy, Joanne Protheroe, Gerry Richardson (York), Anne Rogers, Caroline Sanders 1

Summary Self care can make a significant contribution to health outcomes and quality of life Self care support schemes have been developed in the United Kingdom, including new technologies, information sources, skills training, support from health professionals, and self care support networks However, engagement with some of these schemes has been relatively low, with recruitment skewed towards certain socio-demographic groups Key barriers to engagement with self care from the patient s perspective include personal inconvenience (i.e. time and money), lack of information and lack of support from health professionals In the academic literature, there are a number of models from a variety of disciplines that describe factors that lead to health behaviours such as self care A review of these models was undertaken to identify key factors that might account for the low levels of engagement with supported self care and what interventions might work to secure that engagement Recent reviews have highlighted the importance of extending consideration beyond individual factors which determine self care, to examine wider influences such as the health service, the family and the wider social context At the patient level, key factors include illness beliefs and lay epidemiology; emotional responses to long term conditions; intentions to change behaviour (driven by perceived advantages and disadvantages, social influences, self efficacy, identity and self image); information and skills to support behaviour change; processes to implement and normalise behaviour change; level of disruption experienced with the onset of illness; stages of change; and pre-existing adaptations The nature of the professional-patient relationship and the degree of patientcentredness were identified as key factors influencing behaviour change. However, important contextual factors (e.g. the new GP contract) may constrain such behaviour At the level of context, key factors included the organisation of the health system; material and community resources; social incentives and disincentives; and collective support 2

Background The global burden of disease is shifting to long-term conditions, 1 and there is worldwide interest in the development of models of service delivery to manage these changing needs. 2 The influential Wanless report suggested that the future costs of health care were very much dependent on how well people become fully engaged with their own health. 3 NHS policy envisages care for long-term conditions based around three tiers: case management for patients with multiple, complex conditions; disease management for patients at some risk, through guideline-based programmes in primary care; 4,5 and self care support for low risk patients (70-80% of those with long-term conditions). Self care has been defined as the care taken by individuals towards their own health and well being: it comprises the actions they take to lead a healthy lifestyle; to meet their social, emotional and psychological needs; to care for their long-term condition; and to prevent further illness or accidents. 6 Self care support in England is being provided through a number of initiatives and interventions. These include the development of new technologies, information, skills training (such as the Expert Patients Programme) and support from health professionals, and self care support networks. 7 However, despite cost-effectiveness 22 the impact of the large scale self care support interventions designed as population level public health measures (such as the Expert Patients Programme) has been restricted by limited engagement from patients and professionals. A recent study reported high levels of course cancellation due to recruitment problems, 8 skewed recruitment to middle class respondents as a result of reliance of recruitment of patient support groups in the voluntary sector, a lack of reach into marginalised groups in the population, and a lack of integration with other long term condition initiatives. 9 Difficulties in recruitment are not specific to the UK. 10 In response, a recent survey conducted by the Department of Health examined public attitudes to self care. 11 Seventy-seven per cent of all respondents reported leading a healthy lifestyle, and 82% of those with long term conditions reported taking an active role in self care. Patients in deprived communities and ethnic minorities were less likely to self care, although there was no association between deprivation or ethnicity and self care in patients with long term conditions. However, there was some evidence of a gap between perception on the part of the Department of Health as to what constitutes self care and those of patients, as patients reported low levels of specific targeted self care behaviours (e.g. drinking water, eating five portions of fruit or vegetables, and participating in sport). This gap was present in patients with and without long-term conditions. However, all patients reported high levels of interest in 3

self care, including leading a healthy lifestyle, playing a greater role in treating minor ailments, and taking care of long term conditions. Respondents in this survey also reported on barriers to self care. The most important were time (18%) and money (14%). Other barriers included a lack of knowledge about health (8%); lack of equipment (7%); a lack of health or treatment information (6%); a lack of interest (6%); a lack of confidence (6%); a lack of training and skills (6%); complex or contradictory information (5%); and a lack of support from primary care professionals (5%) and specialists (5%). Those with poor health or long-term conditions were more likely to report that lack of support from professionals was the key barrier. In the opinion of patients, factors that would assist self care included better knowledge of conditions and their treatment (26%); more advice (20%) and encouragement from professionals (13%); more information (19%) or equipment (13%); and skills training (10%) and classes (8%). Respondents also indicated a perception of limited advantages to self care. Although 30% thought that it would lead to greater independence, 22% could see no advantages and 15% were not sure what those advantages would be. In conclusion, the report authors suggested that information and knowledge are likely to be key factors in any effort to increase self care behaviour among the public, supported by the work of health professionals. However, the report also highlighted inconsistencies in the data, such as the gap between the public s perception of their self care and their actual reports of specific self care behaviour. Making sense of these inconsistencies was difficult. Although a lack of information and encouragement are likely to be important, they are unlikely to be the sole causes of such complex health behaviour. Self care has been defined in a variety of ways. One such perspective is to see it as one aspect of wider behaviour around health and every day living. Health behaviour has been defined as those personal attributes such as beliefs, expectations, motives, values, perceptions and other cognitive elements; personality characteristics, including affective and emotional states and traits; and overt behaviour patterns, actions and habits that relate to health maintenance, to health restoration and to health improvement. 12 Illness behaviour refers to the varying ways in which individuals respond to bodily indications, how they monitor internal states, define and interpret symptoms, make attributions, take remedial actions and utilise various sources of formal and informal care. 13 A variety of academic disciplines have been used to understand health and illness behaviour. This report seeks to outline those different theories and present a synthesis which describes the key factors that may impact on engagement with self care. 4

Aims To understand why some people do not engage with supported self care and what interventions work to secure this engagement. Methods Systematically reviewing all the current empirical evidence concerning engagement in self care is beyond the resources available. Instead, this report reviews current models used to make sense of individual health behaviour (including self care) to provide a map of the barriers and facilitators to self care that might be relevant to policy makers. In addition, some empirical data from the Expert Patients Programme will also be reported. The research was conducted through a number of stages. 14 Planning phase The research team included the following disciplines: health services research, psychology, sociology, economics, academic nursing and academic general practice. The initial research question outlined by the client was discussed and developed over a series of face to face meetings between team members, and meetings were also held with the client during the research to feedback and receive further input. Search phase Because of the limited time scale, primary searching was restricted to focussed searches for relevant studies relating to health behaviour and self care in the UK and internationally. Mapping phase Initial discussions highlighted the following possible models of individual health behaviour: Macro sociology Micro sociology (sociology of long-term illness, culture, identity) Social psychological/social cognition Critical epidemiology/public health Education and health literacy 5

Based on the models, key concepts were identified and categorised according to three key levels of analysis (patient, professional and context). The map of concepts are shown in Figure 1. Each of the key concepts within each model will be summarised in turn, outlining their relevance to the adoption of self care and their amenability to intervention. 6

Figure 1 Conceptual map of influences on self care Context Organisation and provision of health services (recursivity) Material and community resources Social incentives and disincentives Collective support or barriers Patient Professional Illness beliefs and lay epidemiology Emotional responses to long-term conditions Patient centredness and the doctor patient relationship Developing intentions to change behaviour perceived advantages and disadvantages social influences self efficacy identity and self image Information and skills to support behaviour change Implementing and normalising behaviour change Stage models of behaviour change 7

What is self care? Self care has a number of different definitions. The Department of Health defines self care as: the care taken by individuals towards their own health and well being: it comprises the actions they take to lead a healthy lifestyle; to meet their social, emotional and psychological needs; to care for their long-term condition; and to prevent further illness or accidents. 6 Different types of self care have been described: 15 Regulatory self care (e.g. eating, sleeping and bathing) Preventive self care (e.g. exercising, dieting and brushing teeth) Reactive self care (e.g. responding to symptoms without a physician s intervention) Restorative self care (e.g. behaviour change and compliance with treatment regimens) Although different long-term conditions have different requirements in terms of their care and self care, across a number of long-term conditions several key tasks have been defined that are required for successful long term condition management: 16 Recognising and responding to symptoms Using medicine Responding to acute episodes and emergencies Managing nutrition and diet Maintaining exercise Giving up smoking Using relaxation and stress reduction Interacting with health care providers 8

Seeking information and using community resources Adapting to work Managing relations with significant others Managing emotions Although self care can be conceptualised as adherence to medical recommendations, that does not reflect the fact that self care is also related to patient empowerment. Recent qualitative work with patients with diabetes has suggested the importance of strategic noncompliance defined as the thoughtful and selective application of medical advice rather than strict adherence. Strategic non-compliance has been associated with being in control of diabetes, coping, achieving a balance between the quality of life and the illness, improved glucose levels and a feeling of well-being. 17 Therefore, it is important not to assume that increasing quality of self care simply involves increasing compliance with normative standards of behaviour. Achieving strategic non-compliance was associated with the following factors: The passing of time and development of experience of monitoring and observing one s body Developing trust in one s own actions and observations Developing a less subservient and more questioning approach towards care providers Developing knowledge of the mechanisms of diabetes Acknowledging the seriousness of diabetes Access to supportive care providers who supply information, help with monitoring and attempt to understand the person s self-care strategies rather than judging them Finally, although much of the focus of self care has been on individual behaviour, self care has also been viewed as a continuum, with basic skills at one end and shared and social activities at the other (see Figure 2). 18 Self care is thus related to broader issues of public engagement, and social capital. 9

Figure 2 Activities Supporting Self Care Basic Health Self care Chronic Patient and Fully health promotion disease self- citizen engaged literacy management involvement communities Recent models of self care such as WISE 19 and the ecological model 20 also highlight the fact that individual self care cannot be divorced from other levels, such as health services, family, wider community, and the physical and socio-cultural environment. According to the WISE model, supporting self care requires a comprehensive approach, involving changes at the level of the patient, the professional and the health system (Figure 3). 19 Figure 3 A comprehensive approach to self care support (WISE model - www.npcrdc.ac.uk/wiseapproachself-management.cfm) Similarly, the ecological approach to self care highlights the multiple levels which need to be considered in supporting self management. In addition, this model describes core resources and supports for self management (RSSM) which correspond to particular levels of the ecological model (Figure 4). The use of multiple levels to encourage behaviour change is also highlighted by the recent NICE guidelines on behaviour change. 21 Factors influencing self care This section presents a review of factors related to self care which have been described in the literature. 10

Figure 4. Model of the determinants of self care behaviour in patients recruited to the EPP Sociodemographic Condition-related Health perception Self care behaviour No qualifications versus degree (0.45) Mental health Age (0.36) (0.29) (0.26) (0.44) (0.30) Number of chronic conditions Condition MSK versus diabetes, cardiac, or other (-0.18) (-0.28) (0.25) (-0.32) (0.32) (0.28) Physical health Self-efficacy (0.27) Level of self care behaviour at baseline (0.54) Level of self care behaviour at six months (-0.46) (-0.33) (0.19) Medically unexplained condition (-0.29) (0.39) Female gender (0.33) (0.37) 11

Factors at the individual level Illness beliefs and lay epidemiology Ideas about illness are an important determinant of behaviour. Knowledge and beliefs derive from a number of sources (e.g. patient perceptions, information from social networks and health professionals, and the media). In psychological models, patient ideas about illness are generally described along five dimensions: 23 Illness identity: the label of the illness and the symptoms which are part of it Cause: views about what may have led to the problem (e.g. genetics, diet) Time-line: views about how long the problem will last (e.g. acute, chronic, episodic) Consequences: the expected effects and views on outcome. Cure/control: expectations about recovery from or control of the illness These representations have abstract and concrete forms. For example, a disease may have an abstract label (e.g. asthma) and specific symptoms (e.g. breathlessness). Coherence among these representations are important. For example, ideas about control may be derived from ideas about cause that also vary according to the wider social and cultural context. 24 The way patients respond to health education and promotion may be influenced by what they already know and understand about their illness. For example, professional ideas underlying an intervention (e.g. taking medication is important in the control of hypertension) may conflict with commonsense ideas (that medication is for disease, and hypertension has no symptoms and is therefore not a disease as such). Knowing that asthma is not viewed as a controllable disease by certain cultures may help explain why maintenance therapy with corticosteroids to prevent asthma attacks may fail. 25 Sociological work highlights the importance of lay perspectives in social context. Health promotion and prevention is founded on models about causal connections in illness and related notions of responsibility. The perceived ability of health services and the individual to take active steps towards keeping the body healthy is incorporated in the preventive message. Messages from preventive campaigns and information about health risks are interpreted by the recipients. 26 Ethnographic research suggests people sometimes have a well developed lay epidemiology which influences the plausibility of modern health promotion messages. For 12

example, there is the notion of the coronary candidate (the 'kind of person who gets heart trouble'). People pay attention to visible risk factors, such as smoking and weight, in explaining or predicting coronary events but are aware that these behavioural risk factors fail to explain some early deaths from coronary heart disease (in those with low risk lifestyles) and long survival (in those with high risk lifestyles). Individuals readily accommodate official messages concerning behavioural risks within ideas about luck and destiny. Violations of candidacy are particularly influential when they occur within people's families. Discussions of these paradoxes lead to doubts about advice on changing behaviour. 27-31 Thus lay epidemiology is both a rational way of incorporating potentially troublesome or paradoxical information, and a potential barrier to health education Emotional responses to long term conditions As well as developing ideas and beliefs about illness, there are emotional reactions to long term conditions, such as anxiety and depression. Evidence shows that the likelihood of depression is increased in the presence of a long-term condition such as diabetes, 32 as well as in the presence of other chronic disease. 33 People with both diabetes and depression are less physically and socially active 34 and less likely to comply with medical care than are people with diabetes alone. 35 The same may be true for people with depression and other chronic disease. 33 These behaviour changes are, in turn, associated with worse long term health outcomes in terms of disease complications and death. 35 Depression may have both a direct affect on health outcomes, and an indirect effect mediated through impaired patient self-care. 36,37 A path analysis study of the relationship between depressive symptoms, diabetes symptoms and self care in type 2 diabetes found that although depressive symptoms at baseline predicted change in diabetes outcomes one year later, this relationship was mediated by changes in self care behaviour, with little of the impact of depression directly influencing symptoms. 38 However, a second study of the mediating effect in type I diabetes found that self care minimally influenced the relationship between depression and diabetes outcomes, and thus did not support the idea that self care was a mediator. 39 Depression and other emotional problems may impact on self care through mechanisms such as hopelessness (which may influence feelings about treatment effectiveness), social isolation and lack of support, cognitive impairment and energy. However, alternative pathways may be possible. For example, self care behaviours may influence mood state, rather than vice versa. Failure to meet diet and exercise standards may increase negative thoughts about the self, increasing the likelihood of depressive symptoms. 40 The effects of chronic disease self management programmes may be moderated by depressive symptoms, such that those who are more depressed benefit more from programmes. 41 Developing intentions to change behaviour 13

Psychological models distinguish between motivation for a behaviour and its implementation. 42 For example, factors that determine whether a patient decides to change diet or increase exercise may be different from those that determine their success or failure in actually making this change. There are many models which seek to predict initial motivation to take up a particular behaviour. These include the health belief model, the health locus of control model, social cognitive theory, and the theory of reasoned action or planned behaviour. These models have been synthesised into an overarching model that provides a parsimonious explanation of motivation for health behaviour. 42 According to psychological theory, a key determinant of behaviour is intention, that is a person s readiness to perform a given behaviour. Several factors impact on the development of an intention to change behaviour. (i) Advantage and disadvantages of self care Intention is influenced by the balance between perceived advantages and disadvantages of behaviour change. Many interventions that aim to improve health may have relatively small perceptible benefits on personal health. In health promotion, for one person to benefit, many people have to change their behaviour even though they receive no benefit, or even suffer, from the change. This is the so-called prevention paradox (see Box 1) Box 1 The prevention paradox 'A preventive measure which brings much benefit to the population offers little to each participating individual'. This has been the history of public health of immunization, the wearing of seat belts and now the attempt to change various life-style characteristics. Of enormous potential importance to the population as a whole, these measures offer very little particularly in the short term to each individual; and thus there is poor motivation of the subject. We should not be surprised that health education tends to be relatively ineffective for individuals and in the short term. Mostly people act for substantial and immediate rewards, and the medical motivation for health education is inherently weak. Their health next year is not likely to be much better if they accept our advice or if they reject it. Much more powerful as motivators for health education are the social rewards of enhanced self esteem and social approval. 43 Public awareness of this paradox means that supposed benefits from a population programme (such as self care) may appear exaggerated. While the benefits of self management in terms of medical parameters or longevity may be difficult for patients to identify, the costs and disbenefits may be much more obvious. Box 2 describes a study from the United States looking at interventions for patients with depression 14

and diabetes and highlights the potential costs of self care for both disorders which may lead to low levels of engagement. Box 2 The personal costs of self care For example, from a patient s perspective, diabetes self-management is no small task. It has been estimated that about 2 hours each day is required for performing the American Diabetes Association recommended self-care tasks among patients taking oral hypoglycemic agents. Physical activity and healthy nutrition are the most time-consuming daily tasks. This challenge was suggested by the unexpected results of Lustman and colleagues that adding cognitive behavioral therapy to diabetes education had a significantly deleterious effect on selfmonitoring of blood glucose during the 10-week treatment period. They postulated that perhaps cognitive behavioral therapy homework, such as recognizing maladaptive thought patterns on top of an already complex diabetes education regimen for self-management, was more than the patients could handle. Our finding that, during enhancement of depression management, intervention patients showed lower adherence to oral hypoglycemic medicines also highlights the complexity and challenge patients face in managing multiple medical conditions on a daily basis. 44 Encouraging self care such as exercise and healthy eating also has additional perceived costs in terms of leisure and pleasure. Behaviours which are seen from the outside as negative or unhealthy by policy makers and health professionals may be judged differently by lay people. The difficulty for those charged with changing behaviour is overcoming the fact that many people prefer the rewards and pleasures of unhealthy habits and behaviours. For example, a key component of self care support is advice about healthy eating. Notions of food and eating in everyday language across cultures are often filled with expressions of epicurean enjoyment. In the context of traditional working class households a good table is one that is well stocked rather than one which displays the virtues of abstinence. 45 (ii) Social influences As noted above in Box 1, social influences may be important. In psychological models, patients perceptions of social pressure to perform the behaviour are an important determinant. These pressures may derive from friends or family, work colleagues, or health professionals. There is evidence that the degree to which a patient perceives that their family understand their condition is related to self care behaviour. 46 Social influences can have a positive influence or a negative one, as concerns about stigma and the reactions of others in the social network can act as a barrier to self care. 47 The immediate social context of close personal relationships (such as those with friends and family) have been found to be particularly important in the management of long term conditions, particularly within family contexts. Family members may fail to legitimize illness, or 15

may refuse to make changes to issues such as meals, or fail to support exercise and weight loss. 48 A study focused on dietary demands of managing specific long-term conditions (coronary heart disease and coeliac disease) found that new practices were assimilated into family life in ways that promoted a sense of continuity with normal life (see section below on implementing behaviour change). 49 As well as influencing self-management activities within home settings, close personal relationships have also been found to be important in influencing pathways into and through formal health care for people with long term conditions. In mental health, even where people report that they made an expressed choice to seek formal care, they were often supported in such choices through their social networks. 50 This example highlights the importance of social networks for the management of long term conditions within whole systems, where relationships with professionals within organisational and material contexts are important in addition to close personal relationships. 51,52 Issues concerning the effects of professionals and wider organizational and social context will be dealt with in later sections. (iii) Self efficacy Self efficacy is seen within the psychological literature as a key determinant of motivation for change. Self efficacy relates to a belief that people can produce a desired effect by their actions. 53 This concept underlies the delivery of the CDSMP and EPP self management programs, 54,55 but is a more generic psychological factor that has been shown to be important in the uptake of self care. For example, among veterans with Type 2 diabetes where levels of self care behaviour were low (despite physician advice), the best predictor of self care behaviour was self efficacy to undertake those behaviours. 56 This finding was replicated in another study of diabetic patients, 57 (where it was found that self efficacy was important irrespective of ethnicity and health literacy)and in cystic fibrosis self care. 58 (iv) Identity and self image Motivation for behaviour change is more likely when patients perceive that the behaviour is consistent with their self-image. This in turn requires some appraisal of patients social position. Respondents in difficult life situations may see active health promotion as a luxury which they cannot afford and which runs counter to the way in which people in their situation get by in their every day lives. Unhealthy behaviours such as smoking or a junk diet may be presented as an inevitable response to their particular circumstances. Negative attitudes may be expressed towards those who are seen to need to engage in health-promoting activity that requires special equipment or activity (see Box 3). 16

Box 3 Self care and everyday life plenty of exercise, I don't mean jogging, but I mean walking, doing housework. Housework keeps you fit anyway. And when you've got kids that will keep you fit, because you're on the go all the time and it's as simple as that 59 This in turn suggests a need to incorporate self care activities into peoples domestic and social contexts. 60 Similarly, although some segments of the population are comfortable with notions of mind-over-matter and self-efficacy, others perceive stress associated with structural factors (e.g. poverty, unemployment) as a more important cause of illness than health behaviours. Therefore some supposed drivers of self care (e.g. self efficacy) may be unlikely to engage those in most need. Work in the area of childhood asthma highlights the importance of issues of identity. Parents and children s accounts suggest that asthma management involves attempts to maintain a sense of their own ordinariness. Paradoxically, medicines, especially inhalers, were the main resource for the accomplishing this goal because they supported the ordinariness of the child and the family far more readily than other preventive measures, because these devices have been developed precisely to be convenient for users. In contrast, other preventive measures create potential breaches in ordinariness by calling for significant changes in lifestyle. 61 Measures of the type advocated by the National Asthma Campaign (such as buying nonallergenic bedding and carpets or special vacuum cleaners, taking peak flow readings or drawing up a self management plan) were rarely mentioned amongst families. Guidelines and educational materials on asthma management attempt to construct a link between biomedicine and the household on a number of different fronts via varied elements such as medicines, information, trigger avoidance, non-allergic households, self-management plans. However, attempts to package both medicinal and non-medicinal elements together poses a difficulty because families select from different elements those which best serve their own specific interests and goals. 61 Being diagnosed with a long-term condition involves disruption to the normal life course, changes to self-perception, adaptation to the social world, re-definition of people's competence as social actors and the protection of self-identity from the threat of stigma. 62,63 The impact of illness on the self has been conceptualized as a biographical disruption, 62 where the taken for granted aspects of life are undermined by the onset of illness and people struggle to come to terms with it. 62 Attempts to reframe perceptions of the past, present and the future to make sense of the illness experience in the context of other aspects of life have been conceptualised in terms of narrative reconstruction 64 and biographical work. 65 A 17

number of studies have focused on identity work, for example in viewing illness as a vehicle for personal transformation through self-change narratives. 66 This is also evident in other work discussing the reconstruction of biographical narratives as a means of making sense of and adapting to the changed and changing situation of living life with a long-term condition. 64,67 Other authors have noted a trajectory of narrative types which are deployed as means of coping. For example, living with chronic fatigue syndrome may start with a restitution narrative, move to a chaos narrative before returning to narratives of restitution and quest. 68 Information and skills to support behaviour change (i) Information As well as intention, patients need the necessary skills, resources and other prerequisites to perform self care behaviour. The Department of Health baseline self care survey identified information as one of the key perceived barriers to self care, 11 and provision of information is one of the core principles underlying the delivery of self care. 69 Although information is a key aspect of current policy around self care and may be a necessary driver of change, many models of health and illness behaviour do not see it as sufficient. 70,71 Although there is evidence that provision of information can improve knowledge (especially when personalized), the evidence for other beneficial effects (e.g. on health behaviour, utilization or outcomes) is more limited. 72 The way that information is provided is important. It has been suggested that a lot of patient education is based on a mechanistic model of communication, where information is channelled from professional and patient in as simple a manner as possible to maximise recall and impact. This model portrays patients as passive and open to manipulation. 73 This model ignores models of education which see learning as a more active process, where learners learn through their own experience and reflecting on that experience, and where active participation in learning is required. The failure to ground information in the lived experience of patients has also been identified as a second major weakness in patient information leaflets designed to aid patient selfmanagement. 74,75 How and who provides information and the point at which it is introduced are likely to be salient factors in uptake. 76 A recent qualitative synthesis conducted at NPCRDC examined patient engagement with and use of information in their management of long term conditions. 77 Two important issues were the effect of disorders that were uncertain (in terms of diagnoses, outcome or legitimacy), and the experience of the condition in everyday life. This, coupled with access to and experience of traditional health services shaped the engagement with and use of information 18

to support self-care. Five key concepts were found which were related to influences on engagement with information. These were: Perception and awareness of alternative self-care possibilities. Information was more likely to impact in medically unexplained conditions Prior extent and nature of engagement with information. Patients are less likely to seek out information on certain conditions (such as those that are stigmatised) Extent of and ability to self-care. Some conditions are highly suited to self care, whereas others require more interaction and brokerage with a health professional Opportunities for use of the information and the stage of the illness career. Certain conditions may benefit from information at an early stage of development, whereas other episodic conditions may utilise information where necessary Congruence and synergy with the professional role. Professional support is necessary to encourage the use of self care in some conditions The information sources developed by the WISE (Whole system informing self-management engagement) 19 group at NPCRDC have a common aim to produce information that is: Relevant Accessible Uses lay and traditional evidence based knowledge 78-81 The WISE self-management research group has found that engaging people with written information for self care may be more successful if an approach is used which is tailored to the type of condition and illness stage. People with different conditions appear to respond to self-care information in different ways and it is important to acknowledge the status of the condition, and its impact on everyday life. Health care professionals provide legitimacy to the use of self care information. More considered use of information (how it is provided, by whom and at which point it should be introduced) is key to facilitating patients engagement with and use of information to support self-care. (ii) Health literacy Another important reason for the failure of information to lead to greater engagement with self care is health literacy. 19

The World Health Organisation states that: Health literacy implies the achievement of a level of knowledge, personal skills and confidence to take action to improve personal and community health by changing personal lifestyles and living conditions. Thus health literacy means more than being able to read pamphlets and make appointments. By improving people s access to health information, and their capacity to use effectively, health literacy is critical to empowerment. 82 Being able to obtain, process, interpret and understand information includes knowing whether to seek professional help, where to seek help, and how to ask the right questions, and follow treatment regimes. The skills necessary to fulfil this definition go beyond cognitive processes and include complex social skills. The above definitions have presented health literacy as a set of competencies or individual capacities, which could be considered to be relatively stable over time, although they may be improved with educational interventions or deteriorate with declining cognitive function. 83 Baker commented in his paper: it must depend upon characteristics of both the individual and the health care system. From this perspective, health literacy is a dynamic state of an individual during a health care encounter. An individual s health literacy may vary depending upon the medical problem being treated, the health care provider, and the system providing the care. Baker 83 has developed a conceptual model of health literacy with 3 levels (Box 4) Box 4 Types of health literacy Individual capacity: personal resources to deal effectively with health information, personnel and the health system. These have sub-domains, reading fluency (ability to process written material and form new knowledge) and prior knowledge, which includes vocabulary, and conceptual knowledge of health and health care. Health-related print literacy: ability to understand written health information. Health-related oral literacy: ability to orally communicate about health. Both the latter two domains depend upon an individuals health related reading fluency, health related vocabulary, familiarity with health concepts (verbal or written) and the complexity of printed and spoken messages that a person encounters in the health care environment. 83 20

Health literacy (alone or in combination with other factors) may place a limit on the ability of patients to engage with self care. For example, unpublished data from the United States suggests that phone based self care interventions were optimally used with those with moderate levels of activation. 84 Patients with very low levels of skills and motivation benefit little from the interventions. 85 Despite the potential importance of health literacy, there is a lack of research into ways of improving it, especially in the United Kingdom. However, there is some evidence that interventions targeted at groups with low literacy can be effective. 72 Implementing and normalising behaviour change Strong intentions do not always lead to behavioural change. Goal intentions refer to the intentions to perform a behaviour. Implementation intentions refers to how goal intentions are translated into behaviour i.e. when, where and how a new behaviour is attempted. Psychological models suggest that implementation intentions can be stimulated by if-then plans that connect opportunities to act with cognitive or behavioural activities that will be effective in accomplishing goals i.e. if situation Y occurs, that I will initiate goal-directed behaviour Z. Goal intention indicates what one will do, an implementation intention specifies the when, where and how of what one will do. 86 Forming an if-then plan means that the person commits himself or herself in advance to acting as soon as certain contextual constraints are satisfied. From a psychological perspective, developing self care thus requires active development of implementation intentions to make new behaviours automatic and routine. Sociological models also highlight the importance of routine, although the emphasis is very different. According to these models, motivation is intrinsically linked to past behaviour and adaptation. Following the onset of a long-term condition, attempts are made to negotiate a new personal and social equilibrium. Essential aspects of this process are coping (i.e. learning how to tolerate the effects of illness), strategies (what actions people do in response to illness) and style (different ways of responding to the illness or its management). 87 For example, patients with heart failure may respond through avoidance (deliberately avoiding information about their condition), disavowal (acknowledging the reality of the condition while positively reconstructing its personal significance) or acceptance (accepting the diagnosis without attempt to reconstruct it). 88 Whereas psychological models would suggest that implementing self management requires active development of new intentions, from the sociological perspective many self care support interventions (e.g. guided self management courses such as EPP) fail to work 21

because of a lack of continuity with existing routines and prior ways of managing and accessing resources and systems of support. Rather than the development of new implementation intentions to encourage behaviour change, the implication is that there is a need to ground self care support in the ways in which people already manage, and their biographical and social context. 89 For example, changing the management of irritable bowel syndrome from a condition managed unsatisfactorily by medicine to one successfully managed within the everyday life of individuals depends on the integration of self care support into patients' everyday lives. In this way, participation in self care support interventions are part of a process of continuity as well as change. Understanding the prior experience of managing illness and contact with health services will increase the acceptability of complex interventions in patients' everyday lives. 90 Intervening to improve health can have negative consequences if it fails to take account of existing views and ways of managing. An analysis of responses to end of life issues raised during the Expert Patients Programme demonstrated that many participants were unprepared to face issues raised by some material as it disrupted some aspects of illness adaptation and existing views about illness, death and dying. This response highlights the complexities and sensitivities of engaging people with self care support and has implications for future educational interventions of this type. 66 Stage models of behavior change Stage models are based on the theoretical assumption that there may be different stages in the initiation and maintenance of health behaviour and that different cognitions are important and influence different stages in promoting health behaviour. The best known model applied to health behaviour is the Transtheoretical Model of Change (http://www.uri.edu/research/cprc/transtheoretical.htm). 91,92 This model identifies five stages of change and individuals are seen to progress through each stage to achieve successful maintenance of a new behaviour. Pre-contemplation: no intention to change Contemplation: starts thinking about changing behaviour Preparation: intention and starts to make plans Action: active attempts to change Maintenance: defined as six months of successful change As well as the stages of change, other important aspects of the transtheoretical model include: Decisional balance, which relates to the pros and cons of changing behaviour 22

Confidence and temptation. Confidence is similar to self efficacy described above, and refers to confidence that one can carry out behaviour in difficult situations, whereas temptation refers to a desire to carry out unhealthy or unhelpful behaviours Processes of change of change refer to the experiential and behavioural processes people go through to process through the stages. These include consciousness raising, counter conditioning, dramatic relief, environmental re-evaluation, helping relationships, reinforcement management, self-liberation, self-re-evaluation, social liberation, and stimulus control One of the key proposed strengths of this model is that it potentially allows interventions to be developed specifically for people at each stage to change their behaviour and move them to later stages. However, the empirical evidence that such targeted interventions are more effective than untargeted interventions is unclear. A recent review suggested that there was little evidence that stage based interventions were superior to non-stage based interventions, or that they were consistently superior to no intervention. 93 This may mean that stage based models are flawed, or that the particular concepts underlying the transtheoretical model are problematic. Others have argued that, rather than moving through a continuum of stages, effective longterm condition management is dependent on conversion experiences, where a sudden change of perspective occurs that leads patients to view their long-term conditions (such as diabetes) as a significant threat to health. 94 Work with patients identified as good self managers indicated a key decision point in patients where they decide to take control (see Box 5) Box 5 The decision to assume control All participants shared a commitment to controlling the disease rather than being controlled by it. They all recalled having taken a conscious decision in this regard at an early point in their illness trajectory and associated that decision with several key insights. These included recognizing that their disease was chronic and would be a feature of their remaining lives, that textbook interventions were either ineffective or problematic, that they did, in fact, have some relevant bases on which to make decisions in relation to their own disease management, and that if they did not assume control, no one else would assume that responsibility on their behalf. 95 Sociological approaches are not prescriptive regarding stages of change but rather outline several aspects of adaptation to illness. Coping, strategy and style (defined above) are linked concepts used to understand the processes of adaptation for those with long-term conditions and disability. Coping refers to cognitive and emotional mechanisms, that spill over into the 23

strategies that people adopt in managing the problems associated with their condition. 87 Style draws attention to variations in narrative representations of illness experience within interactional contexts. Such styles develop as a means of preserving or re-forming personal identity, and are symbolic means by which people present the self in social life. 96 The emphasis is on understanding context including biographical context. For example, in relation to self care in hypertension, migration and cultural adaptation may contribute to the disruption of an individual's life trajectory, so that subsequent diagnoses of long-term conditions are relative to an individual's response and adaptation to issues of discrimination and racism. 97 Studies have also drawn attention to variations in illness experience and management according to gender, 98 class, 99 and age. 100,101 Conceptualising the course of an illness in terms of the illness career also draws attention to organisational factors and professionalpatient relationships 102 highlighting the importance of matching interventions to the stage people have reached. 103 However, it is difficult to make predictions about stages, which need to be understood in context and in relation to the personal biography of the patient. This limits the degree to which such models provide guidance on macro-level interventions, as linking interventions to the trajectories of individual patients requires an understanding of the individual in context. This highlights the importance of the professional-patient relationship (see below). Condition related factors It has been suggested that different long-term conditions are associated with different drivers for self care. For example, long term conditions such as arthritis are often associated with pain, which means that patients experience specific indicators of health and illness. This relates to findings about the importance of body listening. 95 However, other conditions such as hypertension or heart problems are less likely to be associated with overt symptoms. There is evidence that the self care in the former is more likely to be related to illness factors (such as severity) and specific illness beliefs, whereas in the latter generalised beliefs are more likely to be relevant (e.g. self efficacy and general well being). 104 Different types of self care may be more or less relevant to different conditions. Patients with certain long term conditions (such as joint pain, immobility and fatigue) find even simple, low intensity exercises problematic. 48 There is evidence that patients with diabetes are less likely to continue in self help and support groups beyond the initial information phases, whereas those with disorders such as multiple sclerosis are more likely to actively seek out ongoing contact with others with similar conditions. 95 24

This may relate to whether or not people find it helpful to actively think about their illness or share it with others in the same situation. For example rapid dropout from an online self care support group was found to be associated with a need to avoid painful details about cancer, not being 'ill enough' to participate, and illness phases that did not act as motivators for selfhelp group participation. 105 The prevalence of co-morbidity and multi-morbidity is also high. Combinations of long-term conditions may cause particular problems for self management, over and above the combined individual burden of single conditions. These barriers include the compound effects of conditions, competing or contradictory demands of self care in different conditions, multiple medication issues and the burden of caring for a single dominant condition. 106 Professional level influences Patient centredness Since the exceptional potential of the general practice consultation has been recognised, 107 there has been a focus on the communication behaviour of general practitioners and other professionals as a mechanism to improve patient satisfaction and quality of care and encourage relevant behaviour change. Poor communication with professionals is perceived by patients to be a major barrier to self care. 48 Much of the focus has been on the need for patient-centred consultations. Patientcentredness has a number of facets, including: 108 biopsychosocial perspective patient-as-person sharing power and responsibility therapeutic alliance doctor-as-person Although there has been a significant focus on the first two aspects of patient-centredness, evidence suggests that change in patients may be more likely when professionals activate patients by sharing power and responsibility rather than seek to be patient-centred by taking the patient s perspective. 109 However, an exploration of GP and nurse management of menstrual disorders suggested that the professional view of being a patient-centred practitioner is limited to focusing on the dimension of seeing the patient-as-person rather than also sharing power and responsibility. 110 Decisions concerning biomedical aspects of care were seen as the responsibility of the clinician: medical practitioners in primary care may 25

accept the ideology of patient-centredness but currently require the exercise of the biomedical approach to achieve their professional identity. A study on the redistribution of medical work within primary health care teams and its impact on professional identity found that the work of the general practitioner has shifted towards the management of chronic disease and that in the process, the re-organisation of primary care has become focused on managerial systems of increased efficiency and accountability. 111 However, a consequence of this active management of general practice and delegation of responsibility is that both GP and nurse identity is moving away from the patient-centred perspective. Instead, the GP is being reconfigured as the biomedical specialist and the consultant in primary care. Furthermore, they suggest that instead of seeing the patient-asperson, the individual patient is becoming more of a biomedical diagnosis to be managed in the system. Another study explored practice nurse involvement in the facilitation of self-management of long-term conditions. 112 Key findings suggested that current ways of working are likely to be insufficient to support patient s self care. Nurses were confident in dealing with patients in the early stages of the illness trajectory during which there was a tendency to dichotomise patients into being good or bad at self care. However, as relationships developed and became more complex, nurses appeared to lack other resources to encourage self care beyond strategies developed on the basis of personal experience. This is in line with other work suggesting that formal training in self care support skills is very rare. 113 The study highlighted that nurses were expected to work with patients over a long period during which they had to manage feelings of frustration if a patient was stuck. It was suggested that early categorization of patients into good or bad self-managers may contribute to these frustrations and there were indications that they resorted to didactic information giving in these circumstances. The study also suggested that working in a context driven by targets may mean that the requirement to measure biomedical parameters may take precedence over the need to understand complex patient problems, exacerbating the frustrations being experienced. Although GPs value increased patient involvement, it is not necessarily prioritized. 114 This is because supporting self care clashes with other important values of professional responsibility and accountability. GPs own sense of responsibility is reflected in professional concerns being expressed that without guidance and follow up, patients might lose enthusiasm, might use medication inappropriately, may not recognize warning signs, or may obtain incorrect information from other sources. There is evidence that nurses feel vulnerable in their dealings with expert patients, partly due to concerns about litigation. 115 Treatments goals of patients and professionals are often not aligned. 116,117 26

Findings from a qualitative study indicated that most patients with asthma were managed in general practice by a process of monitoring or policing. 118 The use of self care plans did not fit with this way of working. Resonating with the tensions highlighted above, concern was expressed that patients would rely on a guided self management plan and not return for regular review. 118 The findings suggested that while a biomedical discourse prevails, then it is unlikely that self care plans will be accepted or become a routine part of everyday practice. Overall, analysis of professional accounts indicate that barriers to self-care support relate to the lack of effective consultation skills to facilitate patient involvement; conflict between values of professional responsibility and increased patient control; and contextual barriers such as current incentive schemes that reinforce biomedical care. These studies suggest that all these factors may need to be addressed in order to for self care support to become normalized into general practice. 114 Even if that occurs, there is some evidence that the effectiveness of interventions on self care and outcomes is greater when they are directed at patients rather than professionals, 119 which suggests that the optimal type of self care support from professionals may not have been identified. Influence of the professional patient relationship It is expected that self care support will be attractive for only a proportion of patients. Those who have developed or prefer passive relationships with professionals may seek to minimise changes in health behaviour and may focus more on the traditional medical management of illness. Peoples own expertise may be an unattractive alternative to medical expertise in a society where people are rewarded according to skills and expertise. Those who have experienced medically unexplained symptoms over a long period of time may feel frustrated and unsupported when they have no clear diagnosis - in such cases GPs might attempt to frame illness in holistic terms that are rejected by patients seeking a biomedical explanation for their symptoms. 120 There may be deficits in existing health communication styles that require compensating for prior to referral to self care. For example, patients from lower social classes receive less positive socio-emotional utterances and a more directive and less participatory consulting style, characterised by significantly less information giving, less directions and less socioemotional and partnership building. 121 In health promotion and prevention, contextual issues are often be largely ignored, even though they may be key drivers of health behaviour. 122 This may be one of the factors that means that expert information provided by health professionals fails to have an impact, because it ignores contextual constraints that might preclude change. 123 Equally, health professional support needs to take account of the trajectory of the illness, and the different support needs at different points in that trajectory. For example, where external factors are prominent (during times of great stress, such as bereavement) it might be necessary for relatively expert self carers to take a break from 27

responsibility for their illness. However, such a sensitive and patient-centred approach to self care support may be increasingly difficult in health systems where rapid access is being prioritised over continuity and co-ordination of care. Contextual influences Recursivity and the impact of service organization Understanding self care behaviour requires an understanding of the recursive relationship between services and patient illness beliefs and behaviour. Recursivity refers to the way contact with services reinforces or changes illness-related activities. Contact with services causes individuals to change their ideas about illness and the best way to manage it. 124 A qualitative study that explored newly diagnosed type 2 diabetes patients perceptions of their disease and the health services they received at a time of service restructuring found that patient s perceptions of disease and health service delivery were found to be mutually influencing. Different types of health service delivery influenced the ways in which patients thought about and managed their disease, and patients disease perceptions also informed their expectations of, and preferences for, diabetes services. 124 For example, receiving diabetes services in primary care led to the assumption by patients that the condition was not serious. In addition, for those patients that wished to downplay their identity as a diabetic patient, a preference for care to remain in general practice helped to support that goal. Recent empirical work by the Department of Health also identified evidence of these effects. Professionals interviewed in relation to self care support suggested that the policy focus on rapid access led to expectations among patients that de-emphasised the importance of self care. 113 Additionally, where there is a language of empowerment underlining self care, this may have the paradoxical effect of denying the need to be dependent. In the language of empowerment there may be no place for the ill, vulnerable and anxious. A state of empowerment can be viewed as being forced upon people (see Box 6). 28

Box 6 Empowerment Empowerment in the context of NHS Direct has been associated with self care as a way of reducing 'unnecessary' demand on health services. However, health professional and patient perspectives on what is considered necessary demand differ, and in certain contexts, patient empowerment may involve service use as well as self care. Further, our data reveal the context-dependent nature of a concept like empowerment. For example, when people are ill, in pain, or anxious about a loved one. they may value being cared for more than being empowered. Our research suggests that, in addition to its other functions, NHS Direct is also valued as contributing to a sense of being cared for. 132 Similarly, there is a paradox that NHS Direct was set up to assist in self care, but in some cases it acts as a service where patients need to contact one health professional (i.e. the NHS Direct call handler) to determine whether they need to contact another health professional (i.e. an out of hours service or A&E). Material and community resources The context in which people live has important implications for self care activity and the adoption of health behaviours more generally. For example, where agencies charged with bringing about change in areas undergoing regeneration (e.g. police and housing authorities) are perceived to be ineffective, this may be linked to personal coping styles characterised by avoidance and containment strategies. 125 Whilst living in an unfavourable environment was linked to stress, depression, and poor physical health, regeneration has also been perceived as making a positive difference through boosting of morale which may lead to conditions necessary to view health in a more positive light and thus more motivated to change behaviour: deprivation can be both a cause of hopelessness and a spur to social action. 126 In some cases new technological interventions to improve self-management of long-term conditions have been targeted in deprived communities. For example, facilitated access to the internet may improve the capacity of older men living in a deprived inner city area to manage their heart conditions. 127 The relevance of place for the experience and management of long-term illness and disability has been highlighted in an examination of self-care support for people with diabetes in two contrasting and medically underserved communities (one rural and one urban). 128 The study examined the amount of support provided by key sources (including family and friends, community organisations, neighbours and neighbourhood, and resources in the wider community), and the associations between support from these sources and adherence to recommended diabetes self-care behaviours. Findings revealed different problematic health behaviours for the two communities with low rates of exercise in rural residents that was 29

strongly associated with lack of neighbourhood resources. Community based interventions designed to improve diabetes self-care behaviour in underserved communities may be most effective if they include a focus not only on support from family and friends, but also on enhancing neighbourhood resources and creating links between adults with diabetes and relevant community organisations. 128 Social incentives and disincentives There has been recent interest in the effects of directly paying patients to undertake health behaviours. 129,130 Current evidence suggests that financial incentives may be effective when behaviour is relatively simple and time limited (such as keeping appointments), but that maintenance of behaviour change is more problematic. 131 Social and health care structures and policies sometimes reinforce an illness in the foreground perspective, requiring that people who still wish to work instead take disability and unemployment benefits. Obtaining access to these resources requires a need to justify the need for home care by focusing on limitations, symptoms and disability not wellness. Collective support and collective barriers As noted earlier in the section on the definitions, self care does not have to be seen as a purely individual issue. The collective experience of those with long-term conditions is important. The disability movement within the UK and elsewhere has done much to draw attention to barriers to self care. This has been achieved by highlighting the disabling barriers within the environment that limit physical access to social spaces and more generally limit societal participation. 133,134 Attention has also been drawn to lack of equal opportunities for employment and access to appropriate welfare benefits. 135 The latter has often been criticised for being subject to professional (essentially medical) control. The collective action of disabled people has been successful in facilitating policy and legislative changes to enable disabled people to live more independently. There has been a growing acknowledgement of collective support for those with long-term conditions (where people may define themselves as ill and/or disabled). Specific interest groups formed around a specific disease or impairment have been conceived of as health social movements, 136 and they may differ from disability groups in that they may be seeking a greater degree of medical intervention rather than fighting against too much medical intervention. Brown et al give further examples of specific health movements that address disease, disability and illness experience by challenging science on aetiology, diagnosis treatment and prevention. Such movements often involve activists collaborating with scientists 30

and health professionals in pursuing treatment, prevention, research and expanded funding. 137 A study examined community activism concerning health inequalities associated with asthma. 136 Using examples from two community environmental justice organisations, they discuss common approaches to address asthma in poor and minority communities such as challenging racism, employing an environmental justice perspective, and using education to empower community members. They also explored how issues raised in terms of asthma and the environment lead to a politicised and collective framing of illness, whereby personal experience of asthma is transformed into a collective identity focused on discovering and eliminating the social causes of asthma. This links to the citizen involvement and community engagement levels described earlier. 18 31

Summary and implications The preceding work highlights the complexities associated with changing health behaviour and encouraging self care. The different models in the literature have different emphases and present a wide range of factors of relevance. There are a number of key findings of the review which are relevant for understanding engagement with supported self care. Although information may be important, it is unlikely to be a sufficient factor to encourage engagement with self care. Information strategies (such as the Patient Prospectus) need to be augmented by other approaches. There are a range of psychological factors that could encourage engagement, including changing attitudes to the costs and benefits of self care and increasing self efficacy. However, one of the major problems with such approaches is that the best way of intervening to improve self efficacy requires face to face methods (e.g. guided mastery) which are difficult to employ with patients who have yet to engage with self care. The effectiveness of more global approaches to changing attitudes to self care (e.g. mass media campaigns) is unknown. There may be limits to the proportion of patients who have the health literacy, skills and motivation to become effective at self care. It is important that such patients are not stigmatised by communications about self care nor denied the necessary support that they need. Changing self care behaviour may require targeting of interventions at different groups. For example, it is important to distinguish interventions to motivate patients to self care from those which support self care behaviours in those who have already begun to change behaviour. Other ways of distinguishing important groups include socio-demographic variables, types of long-term condition, and stage of the illness. A failure to recognise the adaptive strategies already adopted by individuals and the need for self care to fit in with normal routines is an important barrier to successful self care support. Experiences outside long term conditions are important for understanding why people may marginalise health concerns, and may need more emphasis at the level of individual negotiations with health professionals and campaigns targeted at the population level. Although consultations with professionals may only reflect a small amount of the time patients spend caring for their long term conditions, they may be effective platforms for encouraging self care. Primary care professionals are in a position to target interventions to individual 32

patients because of their knowledge of patient biography and illness trajectory. It is possible that this will be more effective than more general approaches. However, although professionals may be broadly supportive of self care, their support is limited by concerns about the effectiveness of self care and issues of clinical responsibility. Professionals also lack training to engage people effectively with self care and other behaviour change strategies. These limitations are compounded by current incentives which prioritise biomedical parameters of care. As well as impacting on the delivery of self care support by professionals, contextual influences may be an important driver of patient behaviour. Interventions to change patient behaviour need to take account of relevant social, financial and environmental barriers such as poverty, employment or education issues, and the impact of the health service in encouraging or discouraging self care. 33

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