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Health Care Analysis
Published in: Health Care Analysis 1/2018

Open Access 01-03-2018 | Original Article

Why Health and Social Care Support for People with Long-Term Conditions Should be Oriented Towards Enabling Them to Live Well

Authors: Vikki A. Entwistle, Alan Cribb, John Owens

Published in: Health Care Analysis | Issue 1/2018

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Abstract

There are various reasons why efforts to promote “support for self-management” have rarely delivered the kinds of sustainable improvements in healthcare experiences, health and wellbeing that policy leaders internationally have hoped for. This paper explains how the basis of failure is in some respects built into the ideas that underpin many of these efforts. When (the promotion of) support for self-management is narrowly oriented towards educating and motivating patients to adopt the behaviours recommended for disease control, it implicitly reflects and perpetuates limited and somewhat instrumental views of patients. It tends to: restrict the pursuit of respectful and enabling ‘partnership working’; run the risk of undermining patients’ self-evaluative attitudes (and then of failing to notice that as harmful); limit recognition of the supportive value of clinician-patient relationships; and obscure the practical and ethical tensions that clinicians face in the delivery of support for self-management. We suggest that a focus on enabling people to live (and die) well with their long-term conditions is a promising starting point for a more adequate conception of support for self-management. We then outline the theoretical advantages that a capabilities approach to thinking about living well can bring to the development of an account of support for self-management, explaining, for example, how it can accommodate the range of what matters to people (both generally and more specifically) for living well, help keep the importance of disease control in perspective, recognize social influences on people’s values, behaviours and wellbeing, and illuminate more of the rich potential and practical and ethical challenges of supporting self-management in practice.
Footnotes
1
The Institute of Medicine and this paper focus on the support given to people with long-term conditions by health professionals working in formal health services. We acknowledge that family members, friends and particularly ‘peers’ with experience of living with long-term conditions are often hugely important in supporting people to manage (with) their conditions, and in some respects, our points apply to these supporters too. However, the social positions and roles of health professionals generate some particular considerations, so we focus particularly on these.
 
2
We recognise concerns that support for self-management can be seen as a form of governmentality and/or as primarily oriented to cost-cutting in public services, and also concerns that support for self-management will not in practice achieve the kinds of cost saving that strategists hope for. We set these aside for now as we focus on questions about its potential to deliver the more positive gains in healthcare experience, health and wellbeing that are aspired to in policy rhetoric.
 
3
Both patient-centred and person-centred care are complex constructs that have been variously defined (see [17]). At core, their concern is to ensure patients are treated appropriately ‘as persons’—so roughly that they are respected and enabled as humans and moral agents [17].
 
4
Not all of these means of support fall within the usually accepted scope of health system action, although the problems they seek to address are relevant to health system goals.
 
5
These broader conceptions can also, arguably, respect and enable health professionals as human moral agents, but we do not have space to make that case here.
 
6
The inclusion of “(and die)” reflects the fact that long-term conditions are incurable. It provides scope to encourage/permit appropriate shifts to palliative goals.
 
7
We note that Jennifer Prah Ruger and Sridhar Venkatapuram have both made important contributions to thinking about health policy using a capabilities approach. Ruger focuses on two capabilities (to avoid premature death and escapable morbidity) as she makes the case for universal access to healthcare and more distributed forms of healthcare governance [44]. This focus removes the benefits that we derive from a more pluralistic capabilities-based account of living well. Venkatapuram develops an account of health justice based on a consideration of health as a socially influenced meta-capability that is also a means to achieving other capabilities [54]. His account is more compatible with ours, but for our purposes it is important to consider the capabilities associated with living well more generally (and to avoid narrowing these to a health-related subset): we are particularly keen to highlight the ways in which health care can have important implications beyond health.
 
Literature
1.
Atkin, K., Stapley, S., & Easton, A. (2010). “No one listens to me, nobody believes me”: Self-management and the experience of living with encephalitis. Social Science and Medicine, 71(2), 386–393.CrossRefPubMed
2.
Batalden, M., Batalden, P., Margolis, P., Seid, M., Armstrong, G., Opipari-Arrigan, L., et al. (2015). Co-production of healthcare service. BMJ Quality and Safety. doi:10.​1136/​bmjqs-2015-004315.
3.
Berwick, D. M., Nolan, T. W., & Whittington, J. (2008). The triple aim: Care, health, and cost. Health Affairs, 27(3), 759–769.CrossRefPubMed
4.
Boyle, D., & Harris, M. (2009). The challenge of co-production. London: NESTA.
5.
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4(2), 167–182.CrossRefPubMed
6.
7.
Carel, H. (2008). Illness: The art of living. London: Routledge.
8.
Coulter, A., Entwistle, V. A., Eccles, A., Ryan, S., Shepperd, S., & Pereira, R. (2015). Personalised care planning for adults with chronic or long-term health conditions. Cochrane Database of Systematic Reviews. doi:10.​1002/​14651858.​CD010523.​pub2.PubMed
9.
Davis, J. B. (2011). Individuals and identity in economics. New York: Cambridge University Press.
10.
Davis, J. B. (2013). Person-centred health care: Capabilities and identity. American Journal of Bioethics, 13(8), 61–62.CrossRefPubMed
11.
Department of Health. (2005). Self-care—A real choice. London: Department of Health.
12.
Dunston, R., Lee, A., Boud, D., Brodie, P., & Chiarella, M. (2009). Co-production and health system reform—from re-imagining to re-making. Australian Journal of Public Administration, 68(1), 39–52.CrossRef
13.
Easton, P., Entwistle, V. A., & Williams, B. (2013). How the stigma of low literacy can impair patient-professional interactions and affect health: insights from a qualitative investigation. BMC Health Services Research, 13, 319.CrossRefPubMedPubMedCentral
14.
Entwistle, V. A., Prior, M., Skea, Z. C., & Francis, J. J. (2008). Involvement in decision-making: A qualitative investigation of its meaning for people with diabetes. Social Science and Medicine, 66, 362–375.CrossRefPubMed
15.
Entwistle, V. A., Carter, S. M., Cribb, A., & McCaffery, K. (2010). Supporting patient autonomy: The importance of clinical relationships. Journal of General Internal Medicine, 25(7), 741–745.CrossRefPubMedPubMedCentral
16.
Entwistle, V. A., & Cribb, A. (2013). Enabling people to live well: Fresh thinking about collaborative approaches to care for people with long term conditions. London: The Health Foundation.
17.
18.
19.
Granger, B. B., Sandelowski, M., Tahshjain, H., Swedberg, K., & Ekman, I. (2009). A qualitative descriptive study of the work of adherence to a chronic heart failure regimen: Patient and physician perspectives. Journal of Cardiovascular Nursing, 24, 308–315.CrossRefPubMed
20.
Hibbard, J. H., Stockard, J., Mahoney, E. R., & Tusler, M. (2004). Development of the patient activation measure (PAM): Conceptualising and measuring activation in patients and consumers. Health Services Research, 39(4), 1005–1026.CrossRefPubMedPubMedCentral
21.
Higgins, R., Murphy, B., Worcester, M., & Daffey, A. (2012). Supporting chronic disease self-management: Translating policies and principles into clinical practice. Australian Journal of Primary Health, 18(1), 80–87.CrossRefPubMed
22.
Hughes, J. L. (2009). Chronic fatigue syndrome and occupational disruption in primary care: Is there a role for occupational therapy? British Journal of Occupational Therapy, 72, 2–10.CrossRef
23.
Institute of Medicine. (2003). Priority areas for national action: Transforming health care quality. Washington, DC: National Academies Press.
24.
Kennedy, A., Rogers, A., Chew-Graham, C., Blakeman, T., Bowen, R., Gardner, C., et al. (2014). Implementation of a self-management support approach (WISE) across a health system: A process evaluation explaining what did and did not work for organisations, clinicians and patients. Implementation Science, 9, 129.CrossRefPubMedPubMedCentral
25.
26.
Kroon, F. P. B., van der Burg, L. R. A., Buchbinder, R., Osborne, R. H., Johnston, R. V., & Pitt, V. (2014). Self-management education programmes for osteoarthritis. Cochrane Database of Systematic Reviews. doi:10.​1002/​14651858.​CD008963.​pub2.
27.
Lindemann-Nelson, H. (2001). Damaged identities: Narrative repair. New York: Cornell University.
28.
Long Term Conditions Alliance for Scotland. (2008). Gaun yersel: The self-management strategy for long-term conditions in Scotland. Edinburgh: The Scottish Government.
29.
Lorig, K., Chastain, R. R., Ung, E., Shoor, S., & Holman, H. R. (1989). Development and evaluation of a scale to measure perceived self-effficacy in people with arthritis. Arthritis and Rheumatism, 32(1), 37–44.CrossRefPubMed
30.
Lorig, K., Holman, H., Sobel, D., Laurent, D., Gonzalez, V., & Minor, M. (2006). Living a healthy life with chronic conditions (3rd ed.). Palo Alto: Bull Publishing.
31.
Mackenzie, C. (2014). The importance of relational autonomy and capabilities for an ethics of vulnerability. In C. Mackenzie, W. Rogers, & S. Dodds (Eds.), Vulnerability: New essays in ethics and feminist philosophy (pp. 33–59). New York: Oxford University Press.
32.
May, C., Montori, V. M., & Mair, F. S. (2009). We need minimally disruptive medicine. BMJ, 339, b2803.CrossRefPubMed
33.
McDonald, R., Rogers, A., & Macdonald, W. (2008). Dependence and identity: Nurses and chronic conditions in a primary care setting. Journal of Health Organization and Management, 22(3), 294–308.CrossRefPubMed
34.
McLeod, C. (2002). Self trust and reproductive autonomy. Cambridge: MIT Press.
35.
Mol, A. (2008). The logic of care: Health and the problem of patient choice. London: Routledge.
36.
Morgan, H. M., Entwistle, V. A., Cribb, A., Christmas, S., Owens, J., Skea, Z. C., et al. (2016). We need to talk about purpose”: A critical interpretive synthesis of health and social care professionals’ approaches to self-management support for people with long-term conditions. Health Expectations. doi:10.​1111/​hex.​12453.PubMedPubMedCentral
37.
Nussbaum, Martha C. (2011). Creating capabilities. Cambridge: Belknap Press.CrossRef
38.
Owens, J., & Cribb, A. (2013). Beyond choice and individualism: Understanding autonomy for public health ethics. Public Health Ethics, 6(3), 262–271.CrossRef
39.
40.
Reuben, D. B., & Tinetti, M. E. (2012). Goal-oriented patient care—an alternative health outcomes paradigm. New England Journal of Medicine, 366(9), 777–779.CrossRefPubMed
41.
Richards, D. A., Lankshear, A. J., Fletcher, J., Rogers, A., Barkham, M., Bower, P., et al. (2006). Developing a U.K. protocol for collaborative care: A qualitative study. General Hospital Psychiatry, 28(4), 296–305.CrossRefPubMed
42.
43.
44.
45.
46.
Sen, A. (1999). Development as freedom. New York: Oxford University Press.
47.
Sen, A. (2009). The idea of justice. Cambridge: The Belknap Press.
48.
Sinding, C., Miller, P., Hudak, P., Keller-Olaman, S., & Sussman, J. (2012). Of time and troubles: Patient involvement and the production of health care disparities. Health, 16, 400–417.CrossRefPubMed
49.
Smith, M. L., & Seward, C. (2009). The relational autonomy of Amartya Sen’s capability approach. Journal of Human Development and Capabilities, 10(2), 213–235.CrossRef
50.
Snow, R., Humphrey, C., & Sandall, J. (2013). What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: A qualitative patient-led study. BMJ Open. doi:10.​1136/​bmjopen-2013-003583.
51.
Snow, R., Sandall, J., & Humphrey, C. (2014). Use of clinical targets in diabetes patient education: Qualitative analysis of the expectations and impact of a structured self-management programme in Type 1 diabetes. Diabetic Medicine, 31(6), 733–738.CrossRefPubMed
52.
Taylor, S. J. C., Pinnock, H., Epiphaniou, E., Pearce, G., Parke, H. L., Schwappach, A. et al. (2014). A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS—Practical systematic review of self-management support for long-term conditions. Health Services and Delivery Research. 2(53). ISSN 2050-4349.
53.
Townsend, A., Wyke, S., & Hunt, K. (2006). Self-managing and managing self: Practical and moral dilemmas in accounts of living with chronic illness. Chronic Illness, 2(3), 185–195.CrossRefPubMed
54.
Venkatapuram, S. (2011). Health justice: An argument from the capabilities approach. London: Polity Press.
55.
Wagner, E. (1998). Chronic disease management: What will it take to improve care for chronic illness? Effective Clinical Practice, 1(1), 2–4.PubMed
56.
Wanless, D. (2002). Securing our future health: Taking a long term view. London: HMSO.
57.
Wolff, J., & De-Shalit, A. (2007). Disadvantage. Oxford: Oxford University Press.CrossRef
58.
World Health Organization. (2013). Global action plan for the prevention and control of non-communicable diseases 2013–2020. Geneva: World Health Organization.
59.
Zwerink, M., Brusse-Keizer, M., van der Valk, P. D., Zielhuis, G. A., Monninkhof, E. M., van der Palen, J., et al. (2014). Self-management for patients with chronic obstructive pulmonary disease. Cochrane Database of Systematic Reviews. doi:10.​1002/​14651858.​CD002990.​pub3.PubMed
Metadata
Title
Why Health and Social Care Support for People with Long-Term Conditions Should be Oriented Towards Enabling Them to Live Well
Authors
Vikki A. Entwistle
Alan Cribb
John Owens
Publication date
01-03-2018
Publisher
Springer US
Published in
Health Care Analysis / Issue 1/2018
Print ISSN: 1065-3058
Electronic ISSN: 1573-3394
DOI
https://doi.org/10.1007/s10728-016-0335-1

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