Living and coping with adult-onset myotonic dystrophy type 1 from the perspectives of caregivers.

Abstract

To investigate experiences and perspectives of caregivers of people with adult-onset myotonic dystrophy type 1 (DM1) on living and coping with DM1 to inform future targeted rehabilitation services. Qualitative study using the Interpretive Description methodology and Herbert Blumer's Symbolic Interactionism as the theoretical lens. Data was generated through four focus group interviews and two individual interviews, with a total of 13 caregivers. The analysis identified three categorical themes and five subthemes on how caregivers understand living and coping with adult-onset DM1: 'Continuous reflections on everyday life as a caregiver', 'Being a part of the disease trajectory', and 'Changes in social relations when living with a person with DM1'. The findings provided insights into how caregivers found meaning in and handled everyday life, which might be influenced by social interactions when living with a person with adult-onset DM1. The progressive changes in functioning caused by DM1 led the caregivers to make constant adaptations to their everyday lives. The findings illustrate how caregivers can play an important role in their close ones' disease trajectory when addressing biopsychosocial needs that arise in everyday life.