Relatives’ experiences of family members’ eating difficulties

Abstract

Patients with stroke or traumatic injury often suffer from eating disorders. This study describes relatives’ experiences of their next of kin's eating and swallowing disorders. A strategic sample was obtained, and nine informants were interviewed. Using a constant comparative approach for data analysis, three themes emerged: provider for health and well-being, sensitive attitudes about the next of kin's changed appearance, and adaptation to the new situation. The informants’ roles included qualities of caring and concern. Food preparation was crucial, with more time spent on cooking than previously. Combined with circumstantial eating, it dominated the working hours. The informants expressed emotional reactions to eating behaviour. In particular the loss of good, proper eating and affinity during meals left them feeling sad. Strategies such as dinner arrangements and shared responsibility guided the informants in adapting to a new situation. In clinical practice it is important to support informal caregivers, to provide adequate information, and to share responsibility. In occupational therapy one intervention could be to help clients find a balance in activities of work, leisure, and rest.

• Activity
• dysphagia
• eating behaviour
• eating and swallowing disorders
• informal caregivers
• occupational therapy
• support