Family carers’ experiences of dysphagia after a stroke: An exploratory study of spouses living in a large metropolitan city

Abstract

Background
People with post-stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube-feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored.

Aims
To explore family members’ experiences of living with a spouse with post-stroke dysphagia.

Methods & Procedures
This exploratory qualitative study used one-to-one semi-structured interviews to explore family members’ experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio-recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members’ experiences.

Outcomes & Results
Five spouses aged 70–93 years participated. Their relatives’ strokes happened 3 months to 3 years before the interview. Five themes were identified: ‘I do all of it’; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle.

Conclusions & Implications
It is important to consider family members’ perspectives as they often provide vital care to loved-ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better-targeted support.