Psychosocial adjustment, experiences and views of fathers of sons with Duchenne Muscular Dystrophy

Abstract

Background Although Duchenne Muscular Dystrophy (DMD) is acknowledged to have an impact on families as a whole, few studies have investigated psychosocial aspects. Investigation of fathers in paediatric psychology literature is also neglected, and available DMD studies focus on maternal adjustment. This study addresses calls for both, research within the area of DMD and inclusion of fathers. Aims The overall aim was to investigate psychosocial adjustment, and experiences, of fathers of sons with DMD by studying associations between paternal adjustment and: • boys’ functioning (physical and psychological) • perceived paternal involvement in condition management • perception of support • fathers’ experiences of parenting a son with DMD Methods A mixed methods approach, incorporating questionnaires evaluating level of boys’ functional ability (Functional Disability Inventory) and psychiatric adjustment (Strengths and Difficulties Questionnaire); paternal involvement in condition management (Dads Active Disease Support Scale); paternal ratings of satisfaction, and paternal adjustment (General Health Questionnaire), was used. In-depth 2 interviews were also undertaken, and written accounts of experiences and views recorded. Results 50 fathers completed questionnaires and 48 provided written accounts, with a cohort of 15 participating in interviews. Paternal adjustment was comparable to that of mothers, as noted in previous studies, with 38% above cut off for risk of psychological problems. Predictors of paternal adjustment were boys’ psychosocial adjustment, perceived amount of involvement in condition management and perceived support from friends. Themes emerging from the qualitative strand were 1) loss and acceptance; 2) support versus isolation; 3) the fight for resources and 4) race against time. Conclusion Findings emphasise the need for bio-psychosocial interventions, acknowledging fathers’ needs, role, and involvement in their child’s condition. Alongside consideration of the family, the psychosocial impact for fathers should be acknowledged as being equally important to dealing with physical issues surrounding DMD. Professional awareness is needed of the emotional implications, and issues fathers face.