‘Support’ is a rich and multi-faceted concept. Most dictionaries offer a range of definitions of support that include terms such as ‘encourage’, ‘offer assistance’, ‘accept’, ‘hold up’, and ‘stop from falling’. Reflections on the kinds of support provided by parents, friends and peers further indicate that a plurality of practices can be intended and experienced as supportive, and that for many and complex reasons the intent and the experience of support do not always coincide.
Without implying that health services and professionals should offer the same kind of support as parents, friends or peers, we suggest that further reflection is warranted on the scope of support that they can (and should) offer people with long-term conditions. In the following sub-sections we illustrate how both the purposes of support for self-management and the means by which such support is (intended to be) provided and achieved can be more narrowly and more broadly conceived. We then explain why narrower conceptions are problematic, and argue that health services and professionals need broader conceptions of both purpose and means if they are to be in a position to respect and enable people and to improve experiences of health care and overall quality of life.
The Purpose of Support for Self-Management
Putting aside, as noted above, the policy purpose of reducing the demands on, and public costs of, formal health care provision, we now consider the question of what health service support for self-management is (or should be) trying to help people with long-term conditions achieve. This question is rarely critically examined, but the built-in answer of “self-management” needs some unpacking, and the easy consensus that can be gained with answers such as “better health or wellbeing” can hide problematic variants among the many interpretations that are possible within these.
In health service contexts, self-management usually refers to what people with health condition(s) do for themselves, perhaps with the help of family and friends, but in contrast to what health professionals do for them [
11]. Yet policy ambitions for support for self-management go beyond shifting work from health systems and professionals to patients and their families, and efforts are usually made to reassure patients that self-management does not mean doing without professional input altogether [
28]. Once it is recognized that people with long-term conditions have to manage them somehow, the purpose of support seems to be to enable them to manage better. This then begs the question of what counts as managing better. The possible answers have significant practical (and ethical) implications.
We have noted previously an important distinction between helping people to manage their health conditions well and helping people to manage well with their health conditions [
36]. When the focus is on the better management of health conditions, support is usually biomedically framed and relatively narrowly oriented to symptom and disease control. It aims typically to help people to slow the progression of disease, reduce the risk of complications and maximize length of life with as little disease as possible. There is often a strong emphasis on encouraging people to monitor symptoms and biomedical markers (e.g. blood pressure and blood glucose levels) and to adopt behaviours recommended to regulate these. In contrast, when the purpose of support is understood in terms of helping people to manage better with their long-term conditions, disease control can still be of interest, but services work with more expansive and more flexible aspirations for health, wellbeing and quality—not just length of life.
The Means of Support for Self-Management
When considering the means of support (how support is enacted), we suggest it is important to examine the aspects of a person’s (potential) state, agency or action that support is intended to bolster. These will usually be connected, both conceptually and in practice, to more ultimate (even if implicit) ideas about the intended purpose of support (as outlined above): a particular view of purpose will suggest that particular aspects of a person’s state, agency or action are more salient.
Many contemporary approaches enact support for self-management with an instructional-educational emphasis, and are targeted relatively narrowly to perceived deficits in people’s knowledge and skills. These approaches often view the means of support in terms of advice pertaining to diet, exercise, biomedical monitoring and/or medication regimes. The repertoire of means for supporting self-management has been broadened to some extent with attention to perceived shortfalls in people’s self-efficacy and motivation, and the associated introduction of various forms of confidence-building practices, motivational interviewing and personalized care planning. But the effective scope of these can be circumscribed by a continued focus on disease control and length of life goals [
8] and limited by the neglect of more social constraints on people’s behaviours [
16,
48].
Attention to the socio-economic and socio-cultural underpinnings of patients’ states, agency and action, and recognition that people’s abilities are sometimes significantly constrained by their practical and relational circumstances, bring a broader set of potential means of support into view. This includes, for example, the reduction or removal of financial charges for recommended medications and biomedical self-monitoring equipment, and initiatives to address the root causes of long-term food insecurity.
4
Attention to people’s emotional wellbeing and autonomy, and to the factors that influence these, can also increase the range of recognized means of support for self-management. In particular, it can highlight the potential significance of health professionals’ communicative behaviours and relational (interpersonal) attitudes, which people can experience as more or less supportive—or, indeed, as undermining of how they feel in and about themselves. It suggests that health professionals can sometimes support people by, for example: acknowledging their suffering and the difficulties of accepting and dealing with the various implications of long-term conditions [
18,
22]; providing the kind of “moral support” that reassures someone that they are not alone, are being taken seriously, and are not being unfairly and negatively judged; letting someone know that they are “there for you” (which does not necessarily imply being personally available 24/7); and communicating in the kinds of respectful, caring and affirmative ways that help people to retain/develop a valued self-identity, personal narrative and sense of meaning in their life in the face of a new diagnosis or the ongoing challenges and/or deterioration of lifelong conditions [
15,
27].
These ways of behaving and relating can support people in ways that go beyond (or do not involve) working directly to enable them to take a particular action or achieve a particular goal, but they have potential to leave people feeling better in or about themselves and to strengthen important aspects of their autonomy [
16,
31,
35].
Practical and Ethical Significance of Narrower and Broader Conceptions
The above characterizations inevitably raise some evaluative questions about the implications of adopting narrower or broader ideas about the purpose and means of support. We now consider which ideas are better, and argue that only broader conceptions can underpin the promotion of support that respects and enables patients as human moral agents.
5 We start by noting that while narrower views of purpose reflect some important considerations, they can also generate significant problems.
Supporting people to contribute to condition-management in the disease control sense can be extremely valuable in situations where people’s own actions can help avoid preventable outcomes that significantly undermine length and/or quality of life. Diabetes is perhaps the paradigm example of this: people strongly value, for example, not having hypo- or hyper-glycemic emergencies in the short term and not going blind, having feet/legs amputated, or being disabled by a stroke in the longer term, and most would rather (than not) be offered support to take action to avoid these complications. However, matters become much more complicated once we look beyond paradigm conditions or consider particular cases in greater depth.
There are several key considerations here. First, the behavioural regimes that are recommended for disease control, especially in the combinations that occur for people with multiple conditions, are not consistently effective (not everyone who acts as advised will achieve or sustain target biomedical goals) and they are not always particularly (or proportionately) feasible, acceptable or achievable in the first place [
32].
Second, disease control is not the only thing that matters for health and wellbeing. Studies show that people with long-term conditions are (sometimes more) concerned about having a normal life, maintaining social roles and respect, and maintaining or regaining identity and emotional balance [
1,
5,
7,
53]. A narrow focus on disease control can tend to squeeze these concerns out from consultation agendas.
Third, the narrow means of support that are used to encourage patients to act as recommended for disease control can become harmful in several respects. A focus on what are perceived to be patients’ psychological-behavioural deficits (as judged against biomedical ideals), combined with an emphasis on the evidence provided by biomedical and clinical epidemiological research, tends to reinforce (as well as reflect) a positioning of health professionals as experts. Some professionals use this in ways that introduce or perpetuate rather authoritarian hierarchical relationships that tend to preclude patients from functioning effectively as partners in their care [
33]. Further, when health professionals hold and express negatively judgmental attitudes towards patients who do not conform to disease control ideals (including for example, assumptions that they do not care about their own health or that deteriorating biomarkers give lie to their claims about their behaviours) they can leave people feeling anxious, hopeless, unnecessarily guilty, hard done to and disrespected [
14,
50,
51]. Any undermining of patients’ self-evaluative attitudes and sense of identity (especially their sense of themselves as self-authorised), as well as of their scope for self-governance and self-determination, can be understood as undermining of their autonomy [
31,
34].
Fourth, when healthcare systems or professionals view disease control as the main purpose of support for self-management, they at least implicitly position patients as means to that end. In effect, they are harnessing patients to work towards biomedical goals. Of course many people are keen to do what they can to work to limit disease progression and lengthen their lives, and most healthcare professionals aspire to work for the good of their patients and resist relating to them as mere means. Nonetheless, narrow views of the purpose of support for self-management can tend to foster instrumental views of patients, which in turn tend to foster disrespectful practices.
Fifth, narrow views of purpose have no built-in protection against the possibility that actions carried out in the name of support for self-management will, in practice, impair people’s autonomy, identity or other things that matter for their experiences of healthcare and for their overall wellbeing or quality of life. These kinds of harms tend to be neglected within narrow conceptions because they are not recognized as part of the purpose of support.
Sixth, some of the negative implications of narrow views of the purpose of support for self-management, (including potential harms to emotional wellbeing and autonomy, are perhaps less likely to be manifest among people whose high levels of education, material affluence and/or knowledgeable and influential social networks render the behaviours recommended for management of their conditions relatively straightforward and perhaps increase their resilience to off-putting comments. Narrow views are thus potentially likely to exacerbate social inequalities in experiences of healthcare and wellbeing.
We note that the promotion of potentially broader means of support is unlikely to suffice to avoid the problems that can arise with narrow views about the purpose of support. Unless a broad overall purpose is articulated as well, communication strategies which could be enacted in ways that reflect and encourage respect for and enablement of patients as human moral agents can too-readily be enacted in ways that co-opt them back to relatively restricted biomedical ambitions. This is illustrated by the example of health professionals who take up the idea of personalized care planning with patient-led goal setting, but do this within a biomedical frame. As mentioned above, they might offer patients a menu of potential areas of behaviour change and encourage them to develop their own goals, but their biomedical framing constrains the scope for patients to suggest goals in more personally relevant domains [
8].
Broader ideas about the purpose of support for self-management can signal more directly that support should contribute towards patients’: experiences of being respected and enabled as moral agents; scope to function as value-determining partners in their care, and; overall health, wellbeing and quality of life.
The idea of couching the purpose of support for self-management in terms of enabling people to live (and die)
6 well with their long-term conditions [
16,
36] seems particularly promising as a broad statement of purpose. It brings the person with long-term conditions more fully into view as an active moral agent, and one whose view of what counts as living well matters. It can incorporate aspects of healthcare experience, health, wellbeing and quality of life that go beyond those impacted in a knock-on kind of way by disease control.
Broader conceptions of the means of support can also reflect a more theoretically robust view of a person, give more recognition to the importance of relationships between health services or professionals and patients, and do more to illuminate the potential of these relationships to bolster (or undermine) people’s capacity and scope for autonomous agency.
We note as well, however, that taking a broad view of purpose can raise some practical and ethical challenges in support for self-management. It prompts important questions about the scope of health services’ and health professionals’ remits and also about the relative priority of the various aspects of healthcare experience, health, and wellbeing or quality of life that it encompasses. We consider these further in the Discussion.
In the following section, we introduce a capabilities approach and outline its potential for the development of a broad account of support for self-management.