Social networks and the patient work of chronic illness management : what can this approach add?

1. Social networks and the patient  work of  chronic illness management : what can this approach add? Anne Rogers Self-Management Team, Community Based Medicine, University of Manchester

2. Aims and Context • critique of individualistic approach self- management for long-term conditions. • need to acknowledge everyday living, peoples social contexts and networks.   • social networks are central to the mobilising resources in chronic condition management. • this presentation aims to describe concepts informing a programme of research/implementation and explores emergent findings.  A focus on the place of pets  illuminates the potential of this approach.

3. People with Long Term Conditions Resources for self care support:Manchester Research Objectives : • Explore the experience and self-care support needs and practices of socially and health disadvantaged people living with kidney disease, diabetes and/ or heart disease. • Identify the nature and types of networks relevant to chronic illness management. • Assess lay peoples’ systems of support and access to resources (particularly social networks and social capital) which influence support strategies. • Modify existing models create new interventions and assessing the ways it can be used in collaboration with professionals. • Evaluate these in ‘real life’ domestic and community settings of people living with these conditions. • Evaluate the effectiveness cost-effectiveness of this for the service and for individuals.

4. Kaiser Triangle NHS Improvement Plan: Division of Labour

5. Fashioning of individual to undertake self-management • “….a shift which will encourage and enable patients to take an active role in their own care…. to use their own skills and knowledge to take effective control over life with a chronic illness” (Donaldson, L. 2001) • The Chronic Disease Self Management training delivers “confident, knowledgeable patients practicing self-management who will experience improved health status and will utilise fewer health care resources”

6. Results of CDSMP “Damned by faint praise”

7. Impact of focus on the psychological • Existing ways of doing things ignored or seen as Maladaptive • Presumed deviancy and formulaic stage of change (Prochaska,1994) • Psychological models attributions to individual behaviour at the expense of other variables (Bloor, 1986) • Peoples’ need not adequately dealt with, no engagement with material and social needs (Kennedy et al.) • Social comparisons/inequalities, group-based programs for mediating self-efficacy, can have a negative effect if positive comparisons by individuals cannot be made (Gately et al, 2009).

8. Patients Everyday strategies for dealing with Chronic Conditions You've just got to laugh about it… A good way to be, you've got to be, haven't you. You've just got to laugh about it 'cos otherwise I'd (run?) myself into the ground getting upset, so you do just make a bit of fun about it. But I do get a bit upset, you know, about my stomach being the way it is, but I just think, well, it could be worse. Trial and error. It was very new to me so it was a case of trying things off the shelf, the peppermint tablets and that kind of thing and then really identifying food that triggered it but, more often than not it was stress related so it's very much kind of stress management thing. I just tried everything really. 

9. HUR BY HUR CARE F DIABETES

10. Re-Focusing on the chronic illness work of patients and social networks: Corbin and Strauss (1985) identified three types of work: • Illness work (concerned with symptom management); • Everyday life work (the practical tasks such as housework, caring, paid employment); • Biographical work (the reconstruction of the ill person's biography). • Articulation work (keeping things on track) • Emotional Sentimental work etc • Invisible work etc.

12. What is the nature and type of knowledge needed to do the work? • “They (lay people) can often be plain wrong about the causes, course and management of common forms of disease and illness “. (Prior 2003) • Lay Knowledge about health illness and its management: alternative systems of treatment and management help to understand the bases of work undertaken • Lay knowledge provides the bases of emergent practices. (Romme Hearing Voices) • The experience of illness prompts in some a desire to acquire detailed knowledge of aetiology, prognosis and entitlement to service provision. (Ziebland 2004)

13. Patient focussed work: Two settings help seeking, shared decision making, adaptations interactions patients make withinthe organisational set up of health services closed 'isolated') system is one which for has become isolated from its wider context. part of the routine work that patients undertake in the form of self-management outsideof formal health settings - and/or open systems, part of theirwider context, being both influenced by that context and contributing to its character (in Marxian terms dialectically)

14. The work of patients in interaction with health services: Health Service Utilisation • I didn't go as often as I should do. And in fact I've absolutely stopped doing everything that I was supposed to do, because I should really have a weekly blood test, and I haven't. Some of the medication that I was on I stopped taking. • I thought, 'Well what's the point in going?' You know, nobody's following me up, so why would it matter if my potassium level was on the floor, you know.

15. Nature of the Consultation A meeting between experts' situation in which patients were viewed as experts by virtue of the experience of living with an illness. Tuckett et al 1985. Patient centredness referred to 5 dimensions. (Mead & Bower 2000) • the biopsychosocial perspective • 'patient-as-person' • sharing power and responsibility • therapeutic alliance • 'doctor-as-person'.

18. Working alone or with others: The importance of social networks • The notion of work draws attention to the role or others and a division of labour. • Evidence that Professionals and Patients view self management as work Granger et al 2009 • Aspects of work done at individual level rely on the self. • Collective work: family members form the focus of what goes on often dyadic, sons and mothers, wife and husband. (Bury, Gregory). • 'Networks of networks' (Group + Family personal communities) (Vassilev et al 2011)

19. Networks, structure, effectiveness in Chronic Illness Management • Behaviours as collective phenomena in adopting seemingly unhealthy behaviours and in behavioural change • Nicolas Christakis - weight gain in one person is associated with weight gain in others in networks (friends). • Smoking behavior spreads through close and distant social ties, groups of interconnected people stop smoking in concert • Applied to genesis of chronic illness but not management • In CIM Strategies of networking to affirm deny self and identity

20. The social context of illness management Kleinman model of the structure of health care systems (1976) • Popular sector • Individual-based • Family-based • Social-nexus based • Community based Beliefs Choices and decisions Roles Relationships Interaction settings Institutions Folk sector Professional sector

21. Patient work on line Substituting Informal Support: • Those dark hours are the most lonely. I find that when I can't sleep, I often email people. It gives me something to focus on other than the pain while I wait for the painkillers to kick in. Also, you can chat away for free, get some catching up done and you are not disturbing anyone. Better than phoning your best mate at 3am asking to chat! (ID 1406, class 68, W, endometriosis) • 1406, the net is probably the main thing that keeps me sane some days! And support groups which have an email component to them are very helpful at those times. (ID 1405, class 68, W, endometriosis and chronic pain)

22. What about the workers? • What social networks are implicated in LTCM? • How are different networks implicated and what are their functions? • How do different networks work, what is specific about them and what are their properties? • For whom do different networks work and in what circumstances? • Why do they work for some people and not others, why under some circumstances but not others, and what are the underlying mechanisms that are implicated?

24. Methods Administered qualitative interview Network diagram (including quality/ type of contact) Topic schedule (‘Types of Work’) YOU Pahl & Spencer, 2004

25. JD’s Network

26. The Work Undertaken12 members: 1 spouse, 3 health professionals, 3 friends, 2 grandchildren, 1 religious group, 2 voluntary groupsDIETHusband ‘The watcher’ “if he sees me stumbling a little bit when we’re out walking he’ll say ‘café,’ you know go get a coffee and a toast because he knows the sugars are dropping” (TRANSLATION, MEDIATION, EMBODIMENT) ‘The chef” “We’ve changed too, John, he became quite a chef and got a book for homemade soups. Because we started reading the labels when we went supermarket shopping, there’s a lot of sugar…I bought a book and quite often John will just buy some ingredients and make soups and put them in the freezer… “ (TRANSLATION, MEDIATION, EMBODIMENT)Julie ‘The super-sub’ “when we go out Julie will ask me every so often ‘are you okay? do you need to go into a café?’, (do you need to take any tablets?), and when we go on holiday Julie kind of takes over from John” (TRANSLATION, MEDIATION, EMBODIMENT) ‘The nag’ (buys her cook books) “she’s always on at me to… eat healthy food”. She does this ‘nicely’ and “most of it is welcome”. (TRANSLATION, MEDIATION, EMBODIMENT)Carol and Winn ‘The mates’ – wrap up bread rolls on holiday (TRANSLATION, MEDIATION, EMBODIMENT)Lunch groupMake her a sandwich if she feels low (TRANSLATION, MEDIATION, EMBODIMENT)EXERCISEJohn ‘The companion’ – Tai Chi partner (EMOTIONAL WORK) ‘The compromiser’ “we went out on Saturday… and there was a canal there and we set off walking up it but after we’d gone about 10 minutes I said I think you’d better turn

27. Net Draw diagrams Cat Emma John Kate N2 Jane N1

29. 300 people with a long-term health condition participated in the study and of these, 18% owned 1 or more pets. Pets have unique qualities and are not simply substitutes for human to human relationships in long-term illness management. The data suggests that they are able to mediate relationships through very weak ties with others in domestic and community settings and Undertake aspects of long-term illness work which is overlapping but not convergent with support from other network members.

30. Key Themes • Pets v humans generated positive support BUT less negative work than any other type of network member. • Emotional work. Pets did significantly higher amounts of emotional work than friends (p<0.05), medical professionals (p<0.001) and groups (p<0.05). The only members doing a significantly higher amount of emotional work in the networks than pets were partners/ spouses (p<0.001).

31. Creature comforts: • pets offer a unique and distinct role, are a constant and reliable source of support and companionship, fell out-with the norms associated with companionship provided by human to human contact. • I: Oh yes, he does. He comes and gets on me knee. In fact before he goes out every night, he always comes and has half an hour on me knee and we talk, I talk to him. I think people would think I’m a bit cracked but he’s company. You know he’s company for me and he’s my little boy (laughs). • (ID349, Female, cat owner, 86 years, CHD) • .

32. difference between pets and other relationship types ‘unconditional’ support provided from pets and idea of reciprocity • sense that relationships with pets could be fashioned require fewer negotiations were straight forward, simple relationships (i.e. free of negotiations about identity and status). Relationships expressed as one of continuity and consistency when compared with relationships with family, friends or health professionals. • mediate social relationships ‘very weak ties’

33. Interventions? • Are their typologies of networks of chronic illness management? • Health care professionals might use the knowledge in negotiating what needs to be done and by whom, added dimension to patient centredness? • Network based interventions – isolated people reconnecting with others (though some are happy on their own ) • Identify patients at risk