The lived experience of hope among parents of a child with Duchenne muscular dystrophy: perceiving the human being beyond the illness

Abstract

Objectives: Duchenne muscular dystrophy (DMD) is genetically determined, progressive and incurable. Our study's primary objective was to describe the lived experience of hope among parents of a child with DMD.

Methods: Semi-structured interviews were conducted with 12 parents having a child with DMD. A qualitative/ phenomenological approach was utilized to analyse the essential aspects of this experience.

Results: We show that the experience of parental hope emerges from the cognitive appraisal of DMD. The child's illness can be perceived in three ways: as a severe loss, a call to adapt or a way to rediscover the child. Each of these appraisals leads to different ways of hoping. Parents can hope for a cure, the child's well-being or to see their child becoming a whole person. Hope can help parents absorb the initial crisis, sustain their adaptation or prepare for the fatal outcome.

Discussion: Previous research has demonstrated that cognitive appraisal plays a central role in psychosocial adaptation to illness. Our research indicates that perception can also shape the nature of hope and suggests that health professionals should pay particular attention to the nature of parental hope. The fabric of parental hope can give an indication of how parents are coping and adjusting.