Listening to Fathers of Sons with Duchenne Muscular Dystrophy.

Cunniff, Anna Louise; ChishoLm, ViVienne; Chouliara, Zo�

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.

Citation

Cunniff, A. L., ChishoLm, V., & Chouliara, Z. (2015). Listening to Fathers of Sons with Duchenne Muscular Dystrophy. New male studies an international journal, 4, 5-23

• Journal Article Type: Article
• Publication Date: 2015
• Deposit Date: May 26, 2015
• Publicly Available Date: Dec 31, 2015
• Print ISSN: 1839-7816
• Peer Reviewed: Peer Reviewed
• Volume: 4
• Pages: 5-23
• Keywords: Duchenne Muscular Dystrophy; experiences of fathers; qualitative research
• Public URL: http://researchrepository.napier.ac.uk/id/eprint/8322