Listening to Fathers of Sons with Duchenne Muscular Dystrophy

Abstract

Duchenne Muscular Dystrophy (DMD) affects the entire family, however, most studies concern maternal adjustment with fathers' adjustment largely overlooked. To investigate experiences of fathers of sons with Duchenne Muscular Dystrophy (DMD) interviews were held with 15 fathers of a son with DMD, from across the UK. 55 fathers from an associated study also provided written accounts. Grounded theory methodology was used to evaluate the data. Four key themes emerged: 1) loss and acceptance; 2) support versus isolation; 3) fight for resources and 4) race against time. Fathers described the impact of emotional/behavioural factors, which were not routinely addressed by professionals. Findings emphasise importance of person-centred care, indicating how needs could be met, from fathers' perspectives.