To carry out a narrative review of the literature on asset-based approaches in health and social care and specifically in life after stroke; identify key research questions and study methodology for an application for substantive research funding (e.g. to NIHR HS&DR); invite participation and seek the views of key stakeholders on the potential of asset-based approaches.
Health-related asset-based/focused approaches to supporting people to live well in the community long term have become an area of increasing interest in recent years (e.g. Hopkins & Ripon, 2015). Asset-based community development (ABCD), founded on the theory of salutogenesis (Lindstrӧm and Erikkson, 2006) – ‘what makes you feel well/healthy’ rather than what makes you feel ill/unwell – underpins such initiatives. However, work in this area in healthcare settings is in its infancy, with little or no systematic research in stroke. Asset-based/focused approaches offer very different ways of thinking about health and well-being, capitalising on personal (For example, courage and resourcefulness) and community (For example, public spaces and resources) assets to enable people to connect with one another. Such approaches have the potential to complement services provided by health and social care or third sector organisations, and indeed to provide alternative ways of thinking about how these services are provided. Good, systematic evidence on ways in which these contrasting approaches can co-exist in symbiotic relationships is lacking.
Each year, approximately 152,000 people experience a stroke for the first time in the UK, costing the National Health Service in excess of £3 billion annually (The Stroke Association, 2016; National Audit Office, 2010). Within this population, approximately one third of survivors experience a communication difficulty, such as aphasia (The Stroke Association, 2016). Between 30-43 per cent of people with aphasia (PWA) experience residual difficulties in the long term (Bakheit et al., 2007). Despite this, research has predominantly focused on the needs of stroke survivors in the acute or post-acute stages (Almborg et al., 2010; Grohn et al., 2012; Grohn et al., 2014; Hilari et al., 2010). Psychosocial sequelae of stroke and aphasia include depression and anxiety, social isolation and reduced participation in pre-stroke and daily activities, in addition to a reduced quality of life (Anderson and Whitfield, 2013; Ayerbe et al., 2013; Hilari, 2011; Lincoln et al., 2013).
Long-term support for the psychological impact of stroke has been reported as the least satisfactory aspect of services for stroke survivors (National Audit Office, 2010). Unmet needs and the impact of stroke are even more apparent for stroke survivors with aphasia, compared to those without (McKevitt et al., 2011). The impact of aphasia further extends to family members, who may experience a ‘third-party’ disability (Grawburg et al., 2014, p.1184) such as the development of depression or changes to roles such as becoming a care-giver or supporter of communication, in turn causing additional stress (Draper et al., 2007).
ABCD represents a radical shift in thinking from a pathogenic (For example, problem identification; problem solving top-down approach) model of healthcare, to one which views people and communities as co-producers and drivers in developing and sustaining good health and well-being (Foot and Hopkins, 2010; Mathie and Cunningham, 2003). As such any initiative which aspires to integrate ABCD-informed approaches with traditional health and social care services in stroke must include and involve a range of stakeholders in working towards a comprehensive understanding of perspectives and opportunities along the stroke care pathway. One approach to implementing ABCD is based on a systematic, four-stage ‘theory of change’ (Hopkins and Rippon, 2015): 1) reframing towards assets; 2) recognising assets; 3) mobilising assets and; 4) co-producing assets and outcomes. This approach acknowledges that first, a process of ‘reframing’ towards assets through understanding the theory and terminology, is necessary; this helps to increase asset-based dialogue and an awareness of the approach.
The proposed RCF-funded study would capitalise on existing work by the PI and Shiggins. The PI has been leading a Working Group funded through the European COST Collaboration of Aphasia Trialists [CATs] initiative, (http://www.aphasiatrials.org/index.php/working-groups/reintegration. This group brings together a set of small case studies from Israel, Norway, Denmark, UK (Manchester; Norwich) and Dublin, which have explored asset-based approaches for people with aphasia and their families. In particular, the work on ‘reframing towards assets’ carried out at UEA in 2015-16, supported by Shiggins, has enabled us to produce resources We will be able to deploy these in initiating productive asset-based conversations with stakeholders in health and social care sectors as well as patient and carer groups in the community, in order to prepare an application to NIHR.
1) Literature review: We will carry out a systematic narrative review of the literature on asset-based community development (ABCD) approaches in acquired brain injury; this will include studies of 'living well with stroke and aphasia', which may not explicitly reference asset-based/focused theory, but which may be implicitly informed by salutogenetic approaches.
2) Stakeholder discussions: To generate information to scope the design of a bid to NIHR. We will carry out group discussions and interviews (as appropriate) with members of clinical teams involved in stroke and aphasia care, including Early Supported Discharge, in-patient rehabilitation, community and specialist SLT, acute services, 3rd sector organisations (For example, Headway, Different Strokes), patient and carer groups (e.g. Norwich Aphasia Café, Thorpe Stroke Group), public health, adult social services and commissioners.
3) Observations: We will ask to ‘sit in on’ groups (For example, Aphasia Café, Thorpe Stroke Group) to produce data to complement interview/discussion data.
4) We will invite members of stakeholder groups to an end of project meeting in order to present a summary of initial findings and work through key ideas and themes to be taken forward.
Narrative review of the literature.
Stakeholder consultation: qualitative interviews; group discussions
Report to: Norfolk and Waveney CCGs
Principal Investigator: Dr Simon Horton, HSC, UEA
Dr Ciara Shiggins, HSC, UEA
Dr Fergus Gracey, MED, UEA
Mr Ian Duffy (Service User / expert by experience)
Funding:Norfolk and Suffolk Primary and Community Care Research Office for Research Capability Funding (RCF) from the pooled funds from the Norfolk and Waveney CCGs as part of the themed call “Supporting people to live well in the community throughout the life course”