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 Manchester1

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 patient-

centredness 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-effectiveness22 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

Professional

Patient centredness and the doctor patient relationship

Context

Patient

Illness beliefs and lay epidemiology Emotional responses to long-term conditions

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

Organisation and provision of health services Social incentives and (recursivity) disincentives Material and community resources Collective support or barriers

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 non-

compliance’—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

literacy

Health

promotion

Self care Chronic

disease self-

management

Patient and

citizen

involvement

Fully

engaged

communities

Figure 3 A comprehensive approach to self care support (WISE model - www.npcrdc.ac.uk/WISEApproachSelf-management.cfm)

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

Recent models of self care such as WISE19 and the ecological model20 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.

This section presents a review of factors related to self care which have been described in the

literature.

Factors influencing self care

10

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

Level of self care behaviour at baseline

Self-efficacy

Medically unexplained condition

Female gender

Age

Number of chronic conditions

Condition MSK versus diabetes, cardiac, or ‘other’

Physical health

(0.33)

(0.39)

(0.27)

(-0.46)

(0.28)

(0.36) (-0.28)

(0.30)

(0.26)

(-0.18)

(-0.32)

(0.32)

(0.45)

(0.29)

(-0.29)

(-0.33)

(0.25)

(0.44)

Level of self care behaviour at six months

(0.54)

Mental health No qualifications versus degree

(0.37)

(0.19)

Sociodemographic Condition-related Health perception Self care behaviour

Figure 4. Model of the determinants of self care behaviour in patients recruited to the EPP

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 active34 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 self-monitoring 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 non-

allergenic 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 self-

management.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 knowledge78-81

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.’

Baker83 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 long-

term 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 professional-

patient relationships102 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 self-

help 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. Patient-

centredness 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-as-

person,’ 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 socio-

emotional 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

Reference List

1 Murray C, Lopez A. The global burden of disease: a comprehensive assessment of

mortality and disability from disease, injuries and risk factors in 1990. Boston. Harvard School of Public Health on behalf of the World Bank, 1996.

2 Epping-Jordan J, Pruitt S, Bengoa R, Wagner E. Improving the quality of health care for chronic conditions. Qual Saf Health Care 2004;13:299-305.

3 Wanless D. Securing our Future Health: taking a long term view. London. HM Treasury, 2002.

4 Weingarten S, Henning J, Badamgarav E, et al. Interventions used in disease management programmes for patients with chronic illness - which ones work? Meta-analysis of published reports. BMJ 2002;325:925

5 Wagner E, Austin B, Von Korff M. Organizing care for patients with chronic illness. Milbank Quarterly 1996;74:511-543.

6 Department of Health. Self care - a real choice: self care support - a practical option. London. Department of Health, 2005.

7 Department of Health. Research evidence on the effectiveness of self care support (http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_080689, accessed 28th May 2008). London. Department of Health, 2008.

8 Lee V, Kennedy A, Rogers A. Implementing and managing self-management skills training within primary care organisations: a national survey of the expert patients programme within its pilot phase. Implementation Science 2006;1:

9 NPCRDC. How has the EPP been delivered and accepted in the NHS during the pilot phase? University of Manchester. NPCRDC, 2005.

10 Lorig K, Hurwicz M, Sobel D, Hobbs M, Ritter P. A national dissemination of an evidence-based self-management program: a process evaluation study. Pat Educ Couns 2005;59:69-79.

11 Department of Health. Public attitudes to self care: baseline survey (http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4111263.pdf, accessed 28th April 2008). London. Department of Health, 2005.

12 Gochman D. Health behaviour research: definitions and diversity. In: D Gochman, ed. Handbook of health behaviour research: I Personal and social determinants. London: Plenum, 1997;3-20.

13 Mechanic D. Sociological dimensions of illness behaviour. Soc Sci Med 1995;41:1207-1216.

14 Greenhalgh T, Robert G, Macfarlane F, Bate P, Kyriakidou O, Peacock R. Storylines of research in diffusion of innovation: a meta-narrative approach to systematic review. Soc Sci Med 2005;61:417-430.

15 Barofsky I. Compliance, adherence and the therapeutic alliance: steps in the development of self-care. Soc Sci Med 1978;12:369-376.

34

16 Clark N, Becker M, Janz N, Lorig K, Rawkowski W, Anderson L. Self management of chronic disease by older adults: a review and questions for research. Journal of Aging and Health 1991;3:3-27.

17 Campbell R, Pound P, Pope C, et al. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med 2003;56:671-684.

18 Cayton H. The flat-pack patient? Creating health together. Pat Educ Couns 2006;62:288-290.

19 Kennedy A, Rogers A, Bower P. Support for self care for patients with chronic disease. BMJ 2007;335:968-970.

20 Fisher E, Brownson C, O'Toole M, Shetty G, Anwuri V, Glasgow R. Ecological approaches to self management: the case of diabetes. Am J Public Health 2005;95:1523-1535.

21 National Institute for Health and Clinical Excellence. Behaviour change at population, community and individual levels. http://www.nice.org.uk/PH006 (accessed 14th May 2008). National Institute for Health and Clinical Excellence, 2007.

22 Kennedy A, Reeves D, Bower P, et al. The effectiveness and cost effectiveness of a national lay led self care support programme for patients with long-term conditions: a pragmatic randomised controlled trial. J Epidemiol Community Health 2007;61:254-261.

23 Croyle R, Barger S. Illness Cognition. In: S Maes, H Leventhal, M Johnston, eds. International Review of Health Psychology. New York: John Wiley and Sons, 1993;29-49.

24 Lawton J. Contextualising accounts of illness: notions of responsibility and blame in white and South Asian respondents' accounts of diabetes causation. Sociology of Health and Illness 2007;29:891-906.

25 Kozyrskyj A, O'Neil J. The social construction of childhood asthma: changing explanations of the relationship between socioeconomic status and asthma. Critical Public Health 1999;9:197-210.

26 Sachs L. Causality, responsibility and blame -core issues in the cultural construction and subtext of prevention. Sociology of Health and Illness 1996;18:632-652.

27 Hunt K, Emslie C, Watt G. Barriers rooted in biography: how interpretations of family patterns of heart disease and early life experiences undermine behavioural change in mid-life. In: H Graham, ed. Understanding health inequalities. Buckingham: Open University Press, 2000;113-126.

28 Davison C, Davey Smith G, Frankel S. Lay epidemiology and the prevention paradox: the implications of coronary candidacy for health education. Sociology of Health and Illness 1991;13:1-19.

29 Frankel S, Davison C, Davey Smith G. Lay epidemiology and the rationality of responses to health education. Br J Gen Pract 1991;41:428-430.

30 Davison C, Frankel S, Davey Smith G. The limits of lifestyle: re-assessing 'fatalism' in the popular culture of illness prevention. Soc Sci Med 1992;34:675-685.

31 Emslie C, Hunt K, Watt G. 'I'd rather go with a heart attack than drag on.' Lay images of heart disease and the problems they present for primary and secondary prevention. Coronary Health Care 2001;4:1-8.

35

32 Anderson RJ, Freedland KE, Clouse RE, Lustman PJ. The prevalence of comorbid depression in adults with diabetes: a meta-analysis. Diabetes Care 2001;24:1069-1078.

33 Katon W, Ciechanowski P. Impact of major depression on chronic medical illness. J Psychosom Res 2002;53:859-863.

34 Von Korff M, Katon W, Lin E, et al. Potentially modifiable factors associated with disability among people with diabetes. Psychosom Med 2005;67:233-240.

35 Piette J, Richardson C, Valenstein M. Addressing the needs of patients with multiple chronic illnesses: the case of diabetes and depression. American Journal of Managed Care 2004;10:152-162.

36 Hitchcock P, Williams J, Unutzer J, et al. Depression and comorbid illness in elderly primary care patients: impact on multiple domains of health status and well-being. Ann Fam Med 2004;2:555-562.

37 Ciechanowski P, Katon W, Russo J, Hirsch I. The relationship of depressive symptoms to symptom reporting, self care and glucose control in diabetes. Gen Hosp Psychiatry 2003;25:246-252.

38 McKellar J, Humphreys K, Piette J. Depression increases diabetes symptoms by complicating patients' self care adherence. The Diabetes Educator 2004;30:485-492.

39 Lustman P, Clouse R, Ciechanowski P, Hirsch I, Freedland K. Depression related hypoglycemia in type 1 diabetes: a mediational approach. Psychosom Med 2005;67:195-199.

40 Sacco W, Wells K, Friedman A, Matthew R, Perez S, Vaughan C. Adherence, body mass index and depression in adults with type 2 diabetes: the mediational role of diabetes symptoms and self efficacy. Health Psychol 2007;26:693-700.

41 Jerant A, Kravitz R, Moor-Hill M, Franks P. Depressive symptoms moderated the effect of chronic illness self management training on self efficacy. Med Care 2008;46:523-531.

42 Conner M, Norman P. Predicting health behaviour: a social cognition approach. In: M Conner, P Norman, eds. Predicting Health Behaviour: Research and Practice with Social Cognition Models. Maidenhead: Open University Press, 2005;1-27.

43 Rose G. Sick individuals and sick populations. International Journal of Epidemiology 1985;14:32-38.

44 Lin E, Katon W, Rutter C, et al. Effects of enhanced depression treatment on diabetes self-care. Annals of Family Medicine 2006;4:46-53.

45 Wight D. Workers Not Wasters: Masculinity, Social Status and Respectability in Central Scotland. Edinburgh: Edinburgh University Press, 1994.

46 Albright T, Parchman M, Burge S, RRNeST Investigators. Predictors of self-care behavior in adults with type 2 diabetes: An RRNeST study. Fam Med 2001;33:354-360.

47 Wdowick M, Kendall P, Harris M. College students with diabetes: using focus groups and interviews to determine psychosocial issues and barriers to control. The Diabetes Educator 1997;23:558-562.

36

48 Jerant A, von Friederichs-Fitzwater M, Moore M. Patients' perceived barriers to active self-management of chronic conditions. Pat Educ Couns 2005;57:300-307.

49 Gregory S. Living with chronic illness in the family setting. Sociology of Health and Illness 2005;27:372-392.

50 Pescosolido B, Gardner C, Lubell K. How people get into mental health services: stories of choice, coercion and 'muddling through' from 'first-timers'. Soc Sci Med 1998;46:275-286.

51 Pescosolido B. The role of social networks in the lives of persons with disabilities. In: K Albrecht, K Seelman, M Bury, eds. Handbook of Disability Studies. London: Sage, 2001;468-489.

52 Sanders C, Rogers A. Theorising inequalities in the experience and management of chronic illness: bringing social networks and social capital back in (critically). Research in the Sociology of Health Care 2008;25:15-42.

53 Bandura A. Self-efficacy: the exercise of control. New York: W.H. Freeman and Company, 1997.

54 Lorig K, Seleznick M, Lubeck D, Ung E, Chastain R, Holman H. The beneficial outcomes of the arthritis self-management course are not adequately explained by behaviour change. Arthritis Rheum 1989;32:91-95.

55 Lorig K, Sobel D, Stewart A, et al. Evidence suggesting that chronic disease self management can improve health status while reducing hospitalisation: a randomized trial. Med Care 1999;37:5-14.

56 Nelson K, McFarland L, Reiber G. Factors influencing disease self management among veterans with diabetes and poor glycemic control. J Gen Intern Med 2007;22:442-447.

57 Sarkar U, Fisher L, Schillinger D. Is self efficacy associated with diabetes self management across race/ethnicity and health literacy? Diabetes Care 2006;29:823-829.

58 Parcel G, Swank P, Mariotto M, et al. Self management of cystic fibrosis: a structural model for educational and behavioural variables. Soc Sci Med 1994;38:1307-1315.

59 Blaxter M. Whose fault is it? People's conceptions of the reasons for health inequalities. Soc Sci Med 1997;44:747-756.

60 Khan N, Bower P, Rogers A. Guided self-help in primary care mental health: a meta synthesis of qualitative studies of patient experience. Br J Psychiatry 2007;191:206-211.

61 Prout A. Medicines and the maintenance of ordinariness in the household management of childhood asthma. Sociology of Health and Illness 1999;21:137-162.

62 Bury M. Chronic illness as biographical disruption. Sociology of Health and Illness 1982;4:165-182.

63 Bury M, Newbould J, Taylor D. A rapid review of the current state of knowledge regarding lay led self management of chronic illness: Evidence review. London. National Institute for Health and Clinical Excellence, 2005.

37

64 Williams G. The genesis of chronic illness: narrative re-construction. Sociology of Health and Illness. Sociology of Health and Illness 1984;6:175-200.

65 Corbin J, Strauss A. Managing chronic illness at home: three lines of work. Qualitative Sociology 1985;8:224-247.

66 Sanders C, Rogers A, Gately C, Kennedy A. Planning for end of life care within lay led chronic illness self management training: the significance of 'death awareness' and biographical context in participants' accounts. Soc Sci Med 2007;66:982-993.

67 Corbin J, Strauss A. A nursing model for chronic illness management based upon the trajectory framework. In: P Woog, ed. The Chronic Illness Trajectory Framework. New York: Springer, 1992;9-28.

68 Whitehead L. Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis. Soc Sci Med 2006;62:2236-2245.

69 Department of Health. Common core principles to support self care: a guide to support implementation (http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505, accessed 30th May 2008). London. Department of Health, 2008.

70 Herbert C, Visser A. Improving self management in patients with diabetes: knowledge is not enough. Pat Educ Couns 1996;29:1-3.

71 Coates V, Boore J. Knowledge and diabetes self management. Pat Educ Couns 1996;29:99-108.

72 Coulter A, Ellis J. Patient-focused interventions: a review of the evidence. http://www.pickereurope.org/Filestore/Publications/QEI_Review_AB.pdf. Picker Institute, 2006.

73 Dixon-Woods M. Writing wrongs? An analysis of published discourses about the use of patient information leaflets. Soc Sci Med 2001;52:1417-1432.

74 Grime J, Ong B. Constructing osteoarthritis through discourse - a qualitative analysis of six patient information leaflets on osteoarthritis. BMC Musculoskeletal Disorders 2007;8:

75 Cooper H, Booth K, Gill G. Patient's perspectives on diabetes health care education. Health Edu Res 2003;18:191-206.

76 Wiles R, Kinmonth A. Patients' understanding of heart attack: implications for prevention of recurrence. Pat Educ Couns 2001;44:161-169.

77 Protheroe J, Kennedy A, MacDonald W, Lee V, Rogers A. Engaging with information to support self-management from the patients' perspective: a qualitative synthesis. Implementation Science 2008;(in press)

78 Kennedy A, Robinson A. A handy guide to managing irritable bowel syndrome. Southampton: RTFB Publishing Limited, 2000.

79 Kennedy A, Robinson A. A handy guide to managing Crohn's Disease. Southampton: RTFB Publishing Limited, 2000.

80 Kennedy A, Lovell K. A handy guide to managing depression and anxiety. Southampton: RTFB Publishing Limited, 2002.

38

81 Kennedy A, Robinson A. A handy guide to managing ulcerative colitis. Southampton: RTFB Publishing Limited, 2002.

82 World Health Organisation. Health promotion glossary. http://www.who.int/hpr/NPH/docs/hp_glossary_en.pdf. World Health Organisation, 2008.

83 Baker D. The meaning and the measure of health literacy. J Gen Intern Med 2006;21:878-883.

84 Hibbard J, Stockard E, Mahoney E, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Servces Research 2004;39:1005-1026.

85 Ferris T. Supporting the patient in self-management and encouraging patient as a partner in care. Paper prepared for the Commonwealth Fund and The Nuffield Trust, 8th International Meeting on Quality of Health Care: Improving Transitions and Coordination of Care for People with Chronic Illness. Unpublished report, 2007.

86 Sheeran P, Milne S, Webb T, Gollwitzer P. Implementation intentions and health behaviour. In: M Conner, P Norman, eds. Predicting Health Behaviour. Maidenhead: Open University Press, 2006;276-323.

87 Bury M. The sociology of chronic illness: a review of research and prospects. Sociology of Health and Illness 1991;13:451-468.

88 Buetow S, Goodyear-Smith F, Coster G. Coping strategies in the self management of chronic heart failure. Fam Pract 2001;18:117-122.

89 Gately C, Rogers A, Sanders C. Re-thinking the relationship between long-term condition self-management education and the utilisation of health services. Soc Sci Med 2007;65:934-945.

90 Rogers A, Lee V, Kennedy A. Continuity and change?: Exploring reactions to a guided self-management intervention in a randomised controlled trial for IBS with reference to prior experience of managing a long term condition. Trials 2007;8:doi:10.1186/1745-6215-8-6

91 Prochaska J, DiClemente C. Stages and processes of self-change of smoking: toward an integrative model of change. J Consult Clin Psychol 1983;51:390-395.

92 Prochaska J, Velicer W, Rossi J, et al. Stages of change and decisional balance for 12 problem behaviours. Health Psychol 1994;13:39-46.

93 Riemsma R, Pattenden J, Bridle C, et al. A systematic review of the effectiveness of interventions based on a stages-of-change approach to promote behaviour change. Health Technol Assess 2002;6:

94 O'Connor P, Crabtree B, Yanoshik K. Differences between diabetic patients who do and do not respond to a diabetes care intervention: a qualitative analysis. Fam Med 2008;29:424-428.

95 Thorne S, Paterson B, Russell C. The structure of everyday self-care decision making in chronic illness. Qualitative Health Research 2003;13:1337-1352.

96 Radley A, Green R. Illness as adjustment: a methodology and conceptual framework. Sociology of Health and Illness 1987;9:179-207.

39

97 Higginbottom G. 'Pressure of life': ethnicity as a mediating factor in mid-life and older peoples' experience of high blood pressure. Sociology of Health and Illness 2006;28:583-610.

98 Seale C, Ziebland S, Charteris-Black J. Gender, cancer experience and internet use: A comparative keyword analysis of interviews and online cancer support groups. Soc Sci Med 2006;62:2577-2590.

99 Hunt K, Emslie C, Watt G. Lay constructions of a family history of heart disease: potential for misunderstandings in the clinical encounter? Lancet 2001;357:1168-1171.

100 Sanders C, Donovan J, Dieppe P. The significance and consequences of having painful and disabled joints in older age: co-existing accounts of normal and disrupted biographies. Sociology of Health and Illness 2002;24:227-253.

101 Pound P, Compertz P, Ebrahim S. Illness in the context of older age: the case of stroke. Sociology of Health and Illness 1998;20:489-506.

102 Pavalko E, Harding C, Pescosolido B. Mental illness careers in an era of change. Social Problems 2007;54:504-522.

103 Chapple A, Rogers A. 'Self-care' and its relevance to developing demand management strategies in primary care: a review of qualitative research. Health Soc Care Community 1999;7:445-454.

104 McDonald-Miszczak L, Wister A, Gutman G. Self-care among older adults: an analysis of the objective and subjective illness contexts. Journal of Aging and Health 2001;13:120-145.

105 Sandaunet A. The challenge of fitting in: non-participation and withdrawal from an online self-help group for breast cancer patients. Sociology of Health and Illness 2008;30:131-144.

106 Bayliss E, Steiner J, Fernald D, Crane L, Main D. Descriptions of barriers to self-care by persons with comorbid chronic diseases. Annals of Family Medicine 2003;1:15-21.

107 Stott N, Davis R. The exceptional potential in every primary care consultation. J R Coll Gen Pract 1979;29:201-205.

108 Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med 2000;51:1087-1110.

109 Michie S, Miles J, Weinman J. Patient-centredness in chronic illness: what is it and does it matter? Pat Educ Couns 2003;51:197-206.

110 O'Flynn N, Britten N. Does the achievement of medical identity limit the ability of primary care practitioners to be patient-centered? A qualitative study. Pat Educ Couns 2006;60:49-56.

111 Charles-Jones H, Latimer J, May C. Transforming general practice: the redistribution of medical work in primary care. Sociology of Health and Illness 2003;25:71-92.

112 MacDonald W, Rogers A, Blakeman T, Bower P. Practice nurses and the facilitation of self-management in primary care. J Adv Nurs 2008;62:191-199.

113 Department of Health. Support for self care in general practice and urgent care settings: a baseline study

40

(http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4139969, accessed 30th May 2008). London. Department of Health, 2006.

114 Blakeman T, MacDonald W, Bower P, Gately C, Chew-Graham C. A qualitative study of GPs' attitudes to self-management of chronic disease. Br J Gen Pract 2006;56:407-414.

115 Wilson P, Kendall S, Brooks F. Nurses' responses to expert patients: the rhetoric and reality of self-management in long-term conditions: a grounded theory study. Int J Nurs Stud 2006;43:803-818.

116 Heisler M, Vijan S, Anderson R, Ubel P, Bernstein S, Hofer T. When do patients and their physicians agree on diabetes treatment goals and strategies, and what difference does it make? J Gen Intern Med 2003;18:893-902.

117 Chin M, Drum M, Jin L, Shook M, Huang E, Meltzer D. Variation in treatment preferences and care goals among older patients with diabetes and their physicians. Med Care 2008;46:275-286.

118 Jones A, Pill R, Adams S. Qualitative study of views of health professionals and patients on guided self management plans for asthma. BMJ 2000;321:1507-1510.

119 van Dam H, van der Horst F, van der Borne B, Ryckman R, Crebolder H. Provider-patient interaction in diabetes care: effects on patient self-care and outcomes. A systematic review. Pat Educ Couns 2003;51:17-28.

120 May C, Allison G, Chapple A, et al. Framing the doctor-patient relationship in chronic illness: a comparative study of general practitioners' accounts. Sociology of Health and Illness 2004;26:135-158.

121 Willems S, De Maesschalck S, Deveugele M, Derese A, de Maeseneer J. Socio-economic status of the patient and doctor-patient communication: does it make a difference? Pat Educ Couns 2005;56:139-146.

122 Waitzkin H, Britt T. Processing narratives of self-destructive behavior in routine medical encounters: health promotion, disease prevention, and the discourse of health care. Soc Sci Med 1993;36:1121-1136.

123 Thorne S, Paterson B. Health care professional support for self-care management in chronic illness: insights from diabetes research. Pat Educ Couns 2001;42:81-90.

124 Lawton J, Peel E, Parry O, Araoz G, Douglas M. Lay perceptions of type 2 diabetes in Scotland: bringing health services back in. Soc Sci Med 2005;60:1423-1435.

125 Poland B, Green L, Rootman I. Settings for Health Promotion: Linking Theory and Practice. Thousand Oaks/Newbury Park, CA: Sage Publications, 2000.

126 Cattell V. Poor people, poor places, and poor health: the mediating role of social networks and social capital. Soc Sci Med 2001;52:1501-1516.

127 Lindsay S, Smith S, Bell F, Bellaby P. Tackling the digital divide. Exploring the impact of ICT on managing heart conditions in a deprived area. Information, Communication and Society 2008;10:95-114.

128 Shaw B, Gallant M, Riley-Jacome M, Spokane L. Assessing sources of support for diabetes self-care in urban and rural underserved communities. Journal of Community Health 2006;31:393-412.

41

129 Popay J. Should disadvantaged people be paid to take care of their health? No. BMJ 2008;337:a594

130 Cookson R. Should disadvantaged people be paid to take care of their health? Yes. BMJ 2008;337:a589

131 Jochelson K. Paying the patient: improving health using financial incentives. London. King's Fund, 2007.

132 O'Cathain A, Goode J, Luff D, Strangleman T, Hanlon G, Greatbatch D. Does NHS Direct empower patients? Soc Sci Med 2005;61:1761-1771.

133 Barnes C. Institutional discrimination against disabled people and the campaign for anti-discrimination legislation. Critical Social Policy 1992;34:22

134 Oliver M. Understanding disability: from theory to practice. London: Macmillan, 1996.

135 Finkelstein V. Emancipating disability studies. In: T Shakespeare, ed. The disability reader: social science perspectives. London: Cassell, 1998;28-49.

136 Brown P. Embodied health movements: new approaches to social movements in health. Sociology of Health and Illness 2004;26:50-80.

137 Arksey H. Expert and lay participation in the construction of medical knowledge. Sociology of Health and Illness 1994;16:448-468.

42

The University of Manchester in Collaboration with The University of York

NPCRDC5th Floor, Williamson BuildingThe University of ManchesterOxford Road M13 9PL

Telephone: 0161 275 7601Fax: 0161 275 7600

Centre for Health EconomicsThe University of YorkYork Y01 5DD

Telephone: 01904 321418/01904 321442Fax: 01904 321402