"At the end of the day we're kind of motoring along on our own": Investigating the views of people with aphasia, their family, and SLTs on the need, value, and challenges of providing family therapy after stroke.

Abstract

Background Stroke significantly impacts the lives of both the person who sustained the stroke and their entire family unit, often profoundly changing the roles and dynamics within families. Aphasia, a communication disability that can occur post stroke that affects language comprehension and expression, can exacerbate the changes within a family unit, with both persons with aphasia and families experiencing social isolation, loneliness, and depression. Although family therapy can help to address the changes and support family members during adjustment periods after significant events, there is a lack of research on the use of family therapy when one person has aphasia.

Aims This study aimed to address the following question: What are the experiences and perceptions of people with aphasia, their family members and speech and language therapists on the need, value, and challenges of providing family therapy in contexts where one member of the family has aphasia?

Method and Procedures This research was of a qualitative design utilising an exploratory-experiential approach. Eight individual semi-structured in-depth communication-supported interviews were conducted with PwA and their family members. Two focus group discussions were held with seven speech and language therapists. Reflexive thematic analysis was applied to systematically code interview and focus group data in order to explore patterns in meaning from multiple stakeholder perspectives.

Outcome & Results Five themes were generated through the analysis process: (1) That?s it. You?re on your own; (2) Psychosocial challenges faced by PwA ? diverse solutions for a diverse disability; (3) The cautious boundaries of SLTs working with families; (4) Doing my best and imagining what?s possible: SLT roles in family therapy; and (5) "There is just so much going on? - The luxury of time and timing. Theme 1 focuses on the intense period of change that occurs after stroke, especially when people are discharged from acute care. Theme 2 centres on some of the reasons why there are limited supports available to families where one person has aphasia. Theme 3 highlights the perspective of SLTs and their role in supporting PwA and their families after stroke. Theme 4 identifies the resources SLTs need to support PwA and their families to negotiate familial changes. Theme 5 represents how both families and SLTs lack the time to support changes in familial relationships and identified when might be `right time? for family therapy to occur, and in what context.

Conclusions This study provides evidence that there is a need for communication accessible family therapy services for PwA and their families after stroke. Systemic change is needed within the healthcare system to meet the needs of families adjusting to post-stroke aphasia. Better coordination and integration between healthcare services in the context of family therapy could provide an opportunity for joint working between SLTs and family therapists.