Equity and access to self-management support

"How wonderful that we have met with a paradox. Now we have some hope of making progress”

Niels Bohr

With over 60% of UK adults living with a long term condition, there is a great deal of interest in how best to support self-management [1]. We know from research that self-management can have a positive effect on clinical symptoms, quality of life, attitudes and behaviours and that it influences healthcare resource utilisation [1]. It also offers the potential to address some of the persistent inequalities which exist in healthcare, since those with lower health literacy and socio-economic status are disproportionately affected by long-term conditions [2].

And herein lies the paradox…there is evidence that those with greater need may be being excluded from self-management support programmes, despite potentially having the most to gain [1, 3].

Stroke survivors with cognitive and communication difficulties have been shown to be able to engage with self management support effectively [4]. A participant on Bridges training recently reflected on using the workbook with “J”, a stroke survivor who had significant cognitive impairments, including difficulties with insight and planning. She described “not being sure if he was ready”, but wondered if, with the support of friends and family, it could help him build some understanding and awareness.

Beginning with the “what I have achieved so far” section proved to be a positive experience for both “J” and his family, shifting the focus from what he couldn’t do to what he could do.   With increased motivation and engagement, he was able to go on to take an active role in goal-setting, and to develop his insight and self-awareness. His therapist is optimistic that he will be able to continue to work collaboratively with family and therapists to set targets and make decisions.

It appears that this example may be an exception to the rule. A recent study found that cognitively impaired patients, along with those with low mood, were being excluded from a self-management support programme, having been identified as “unsuitable” by therapists [3]. This is reflected across a number of stroke self-management studies, which have shown lower rates of recruitment to programmes from certain patient groups [1,3].

One size does not fit all in offering self-management support. In order to improve the accessibility and equity of self-management programmes, we need to improve our understanding of how to provide individualised support which is tailored to specific need.

We need insight into the basis of the decision-making processes which currently result in some individuals being characterised as “unsuitable” for self-management support. We need to learn from the experience of patients in how they were supported – or not – to self manage. We need to equip our healthcare professionals with the sophisticated communication skills needed to work with all patient groups.

My research interest is in using an ethnographic approach to explore how self-management is supported after stroke. This will involve observing rehabilitation sessions as well as interviewing therapists and patients about their beliefs, attitudes and experiences. The study will encompass a broad spectrum of individuals, including stroke survivors who have issues with their cognition and communication, and those who have experienced low mood. Findings will be discussed and refined with our stakeholder group, which includes representatives of different professions as well as lay members.

We hope that by understanding more about what helps and hinders self-management, we can learn how to adapt the ways in which we support people after stroke. If we can gain a greater understanding of how to work more effectively with different patient groups, we can begin working towards making access to self management support more accessible and equitable.

References:

(1) De Silva D. Helping people help themselves. 2011. The Health Foundation; London: London.

(2) Coulter, A, Roberts, S and Dixon, A. Delivering better services for people with long-term conditions. Building the house of care  2013 [cited 2015 Oct 19]; Available from: http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/delivering-better-services-for-people-with-long-term-conditions.pdf

(3) Jones F, Gage, H, Drummond, A, Bhalla, A, Grant, R , Lennon, S et al,. Self-management in stroke rehabilitation: A feasibility study of an integrated stroke self-management programme: a cluster randomised controlled trial. BMJ Forthcoming 2016

(4) Cadilhac, DA, Hoffmann, S, Kilkenny, M, Lindley, R, Lalor, E. Osborne, RH. A phase II multicentered, single-blind, randomized, controlled trial of the stroke self-management program. Stroke 2011;42(6): p. 1673.