Suchergebnisse

Research was conducted on parents' experience of caring for a child living with Duchenne muscular dystrophy (DMD). The focus of this research was on the key psychological aspects of the process of adjustment to the illness of their child (family and spousal relationship, daily life, emotions, career, spirituality, and coping strategies). There was evidence throughout the study of gender‐specific differences in constructing the different aspects of the shared experience. The main findings included major differences in the initial reaction and coping styles between mothers and fathers. These differences could be perceived as a threat or could serve as a source of isolation between parents. Additional findings included the unequal sharing of caregiving tasks between partners: the primary caregiving role usually being assumed by the mother, with the father playing a supportive role. The unique contribution of this study in further describing the lived experience of parents of a child with DMD is its attention to the internal dynamic of the relationship between mothers and fathers. This dynamic is highly dependent on the respective roles of primary and secondary caregiver. This research has implications for the design and implementation of intervention strategies aimed at couples caring for a child with DMD, or with other severe, chronic, and uniformly fatal illnesses.