A 'photo-phenomenological' investigation of caregiving burden amongst British mothers of daughters with Rett syndrome

Abstract

Background: Rett Syndrome is a rare, neurodevelopmental disorder causing severe physical and cognitive impairment which is found almost exclusively in girls. Caring for a child with Rett Syndrome is highly demanding yet relatively little research has been undertaken, especially in an European context, to explore caregivers' accounts of their experiences. Method; Eight mothers of a daughter with Rett Syndrome from various parts of the United Kingdom agreed to participate in a mixed methods study which combined two forms of qualitative data collection. Participants were asked to capture elements of their experience through taking and titling a series of photographs. These photographs were subsequently discussed in extended semi-structured interviews. Verbal and visual data were analysed together using interpretative phenomenological analysis. Findings: Three themes are presented and illustrated with a series of images and extracts. In 'catastrophic loss of identity' we outline how the women felt fused to their daughters and experienced an existential crisis. In 'insufficient time and inadequate support' we discuss some of the main day-to-day challenges of caregiving with a focus on challenges in both accessing and accepting help. Finally in 'managing stigma' we look at the strategies women use to protect themselves and their daughters from the disablist discrimination they encounter. Discussion: We discuss some of the challenges and opportunities of combining photographic and verbal data when exploring caregiving and disability.We offer some suggestions for how psychosocial support interventions might be developed to help parents of children with highly disabling conditions like Rett Syndrome.