9 September 2015
With ever more attention on the NHS and how many nurses and doctors are needed to give people the best care, one part of the health equation is going unnoticed – What attention is being paid to the role of the patient and their extended network of relationships? In early 70s West Coast America a piece of research by Anselm Strauss and colleagues examined a set of questions on ‘self-care’.
The study in hospitals in San Francisco talked about self-care as ‘work’ asking: What are the sources of patient’s work? What types of work do patients do? How does that work relate to the course of the illness and the phases?
Interestingly it also examined whether hospital or healthcare staff knew about the work or self-care the patient carried out, was it appreciated, did self-care change when a patient was in hospital?
Even after more than 30 years they are all still relevant questions now. Especially in the context of the Francis enquiry which found failings in staffing and formal systems of care in NHS hospitals. There is still a general focus in the media, NHS and academia on quantifying staffing levels to deliver safe care. Our own Theme 3 research is looking at this very issue. But my focus is on the role people and patients play in alternative and complimentary support to ensure patients get the compassionate and dignified care we would all want. What’s more, most of that care takes place outside the hospital, and the future of healthcare remains firmly fixed on the notion of delivering that care in the community or at someone’s home.
So what does this mean? How does a patient deliver their own care? Well for the team in Theme 5 it means: How they manage their long term condition (for example diabetes) by using their network of ties within their community - to help them use the resources and support they need. So for example getting a neighbour to pick up a prescription for them.
Traditionally academics and health professionals have looked at how to motivate patients to look after themselves – manage their long term condition. But that approach overlooks what exists in the community around that patient – their co-called health eco-system – and how that network of connections potentially helps people manage a condition. Those networks can differ according to the culture and members making up a personal community.
In my research theme (theme 5) we look at the full range of support, work, meaning and function of relationships and ties a patient may have in their community – and how that relates to the way they manage their illness.
Most of us would assume that intense close and intimate relationships provide the most support, most of the time. Say a partner looking after the patient. But we have found that those ‘weaker’ ties or less intense relationships are overlooked – they none-the-less are part of the system that helps patients manage their own condition.
Weaker ties like neighbours, friends and even pets look to be more durable over time because those patients with a long term condition feel it is more morally acceptable to have a reciprocal arrangement in this way.
In fact these ‘weak’ ties may be more important to self-managing a long term condition for a patient than the self-management support offered by a health professional.
We found that greater levels of social involvement in the community through a patients’ own network coincides with a happier patient, with more support to manage their illness. As a result they use the traditional health services much less.
So this makes me think that we need to focus more on increasing the capacity and diversity of support networks for patients – certainly from the evidence in our research so far it looks like this would be a more desirable and cost effective way of supporting people to manage their own long term condition. Complementing the traditional health services.
It would mean linking ways to help patients get a greater sense of control over their illness and investing in a broader and imaginative set of local wellbeing resources and relationships.
We need to go further in our understanding of how our culture of networks works, and how they become active to help people with a long term condition manage their health and wellbeing. We’ve moved a long way from Strauss’ first look at the ‘working’ patient in hospital, to wider questions about our culture, community and networks.
Reeves D, Blickem C, Vassilev I, Brooks H, Kennedy A, Richardson G, et al. (2014) The Contribution of Social Networks to the Health and Self-Management of Patients with Long-Term Conditions: A Longitudinal Study. PLoS ONE 9(6): e98340. doi:10.1371/journal.pone.0098340
Rogers A, Brooks H, Vassilev I, Kennedy A, Blickem C, et al. (2014) Why less may be more: a mixed methods study of the work and relatedness of ‘weak ties’ in supporting long-term condition self-management. Implement Science 9: 19. doi: 10.1186/1748-5908-9-19
Brooks HL, Rogers A, Kapadia D, Pilgrim J, Reeves D, et al. (2013) Creature comforts: personal communities, pets and the work of managing a long-term condition. Chronic Illness 9: 87–102. doi: 10.1177/1742395312452620
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