Poster The Joint Annual Meeting of the Stroke Society of Australasia (SSA) and Smartstrokes 2023

Perspectives of Stroke Survivors and Carers Completing a Late-Stage Swallowing Rehabilitation Program for Severe Chronic Dysphagia: Implications for Clinical Practice and Service Development (#231)

Claire A LAYFIELD 1 , Kirrie J Ballard 2 , Kate L Anderson 3
  1. Linguistics, Macquarie University, Sydney, NSW, Australia
  2. Speech Pathology, The University of Sydney, Sydney, NSW, Australia
  3. Health and Social Development, Deakin University , Melbourne, Vic, Australia

Background: Research reporting on dysphagia outcomes rarely provides in-depth analysis of perspectives and experiences of individuals following stroke. Qualitative research allows for the analysis of systematically collected data reporting on the lived experience of clients and their carers following stroke. These methods create an opportunity to complement functional outcome measures with client and carer perspectives to capture a more holistic perspective of life after stoke.  

 Aims: This study aimed to evaluate client and carer perspectives of the lived experience of managing severe and chronic dysphagia following stroke.  It further explored the experiences of completing a late stage swallowing rehabilitation program. It aimed to provide insight into care received, future planning of service delivery and under-recognised burden of managing chronic post stroke dysphagia.

 Methods: A qualitative, constructivist grounded theory approach (Charmaz 2014) was utilised to investigate long-term dysphagia experiences for stroke survivors and their families.  Stroke survivors and their family members (n=8) participated in semi-structured interviews about their experience living with dysphagia and with the rehabilitation that they had received since their stroke. Stroke survivors had sustained strokes 17-47 months earlier and were dependent on enteral tube feeding.

 Results: Interview transcripts were coded and analysed for themes and sub-themes. Major themes included: the experience of stroke and its aftermath;  living with dysphagia and its implications; perspectives of the therapeutic experience post-stroke, both in the hospital system and as members of a community based rehabilitation program. Subthemes around the type of intervention, the clients themselves and the therapeutic approach are elucidated. 

Conclusion: Client and carer perspectives can provide insight to under-researched and under-reported aspects of the care continuum for people living with chronic post stroke dysphagia. Considerations for service planning and intervention delivery are identified.

  1. Charmaz, K. (2014). Constructing grounded theory. London. Sage.