Listening to fathers of sons with Duchenne Muscular Dystrophy

Anna Cunniff, Vivienne Chisholm, Zoe Chouliara

Research output: Contribution to journalArticle

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 [IDENTIFIABLE]. 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.
Original languageEnglish
Pages (from-to)5-23
Number of pages19
JournalNew Male Studies: An International Journal
Volume4
Issue number2
Publication statusPublished - 25 May 2015
Externally publishedYes

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