Towards an asset-based approach to promoting and sustaining well-being for people with aphasia and their families: an international exploratory study

ABSTRACT

Background: There is growing interest in interventions that promote positive outcomes and well-being for people with aphasia (PWA) and their families, but provision is inconsistent. An asset-based approach, based on the theory of salutogenesis, focuses on what makes you well rather than ill. This approach has been used successfully across a variety of research fields, including health and social care research and practice, and has the potential to provide coherent strategies to support people living successfully with aphasia.

Aim: To explore the relevance and potential of an asset-based approach to promoting and sustaining well-being for PWA and their families, across contexts and cultures.

Methods & procedures: Exploratory case studies were carried out in the United Kingdom (UK), Norway, Israel, Ireland, and Denmark in a variety of settings. Following an interpretative paradigm, we used qualitative methods including: interviews; appreciative inquiry; group discussions; and participatory action research. 95 PWA and 25 family members were asked to identify assets within themselves and their communities that promote, sustain and maintain well-being, by responding to: “What makes you feel good/well/healthy?” Data were analysed using thematic analysis.

Outcomes & results: An asset-based approach proved to be a powerful means for PWA and family members to explore what helps them live well with aphasia. Key themes were identified: (1) personal journey; (2) helping others; (3) connecting to self; (4) connecting to others; (5) recreation; and (6) personal attributes. Self-identification of assets, within the person and their community, and connections to these, helped PWA and their family members to maintain well-being, overcome barriers and regain confidence. Using this approach, focusing on the person’s recognition, activation and mobilisation of assets, could enhance the person’s understanding and restore meaning around the stroke and onset of aphasia.

Conclusion: This novel exploratory research demonstrates the relevance and potential across diverse cultural contexts of taking an asset-based approach to promoting and sustaining well-being for PWA and their families. Focusing on maintaining connections to these assets and developing meaning around the event, could prevent some of the negative sequela of stroke. The “patient–professional” relationship must transform into a collaborative partnership, with time and flexibility needed to introduce this approach. Further research should examine how service providers and PWA could develop and operationalise an asset-based approach in clinical and community settings and identify if there is an optimum timing for introducing this approach along the stroke pathway.

KEYWORDS:

• Aphasia
• stroke
• asset-based approach
• well-being
• salutogenesis

Acknowledgments

We acknowledge the invaluable contributions of people with aphasia and their family members: the Aphasia Research Collaboration (UEA); Speakeasy (Bury, UK); Aphasia United (conference delegates); CONNECTing group (TCD); Statped (Norway); and all participants in this research, as well as student and staff collaborators: Dr.Irene Walsh, Caoimhe Loftus and Emma Jones (Trinity College Dublin), Maja Højbjerg Horn and Anne Kirstine Frost Frederiksen (University of Southern Denmark), Felicity Stephenson, Nicola Milbourn, Olivia Pembery, Rachel Pillips, Tasnim Morrison, Zoe Mardell (University of East Anglia), Elizabeth O’ Brien and Clodagh Mc Greevy (National University of Ireland Galway), Mali Gil (Loewenstein Rehabilitation Hospital, Israel).

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. Afasi-hverdag (Aphasia in everyday life) is a Norwegian 20 min short video, where three young people with aphasia share their stories of life and living with aphasia. They discuss their challenges but also the activities they participate and roles they have after stroke: https://afasi.no/2012/09/09/filmen-afasihverdag/(Afasiforbundet i Norge, 2012).

2. Hygge is the practice of creating cosy and congenial environments that promote emotional well-being (Collins English Dictionary, 2018).

Additional information

Funding

This work was supported by the COST Cooperation in Science and Technology, Collaboration of Aphasia Trialists [(ISCH COST Action IS1208)]; Vibeke & Victor Bloch’s Foundation.