Psychosocial needs of siblings of individuals with Duchenne
Research type
Research Study
Full title
The psychosocial functioning and coping strategies of siblings of individuals with Duchenne muscular dystrophy.
IRAS ID
334886
Contact name
Rosie Locke
Contact email
Sponsor organisation
Newcastle University
Duration of Study in the UK
1 years, 3 months, 3 days
Research summary
There is a lack of understanding of the support needs of siblings of individuals with Duchenne Muscular Dystrophy. This is despite the patient community highlighting the need for more support. To date only two studies have been conducted with siblings, both of which highlighted elevated distress and reduced well-being (Read et al. 2010; Read et al. 2011). This research is over a decade old and in this time, changes have been made to the medical care of Duchenne Muscular Dystrophy meaning the needs of siblings might have changed. In addition, conclusions were drawn based on caregiver-proxy ratings as opposed to sibling self-report. A mismatch has been found between caregiver-proxy and self-report ratings (Houtzager et al., 2005), calling in to questions the validity of the results and highlighting the need for up-to-date research. In their 2011 study Read et al. found siblings utilised a variety of coping mechanisms to mange the daily stress of having a sibling with Duchenne Muscular Dystrophy. Whilst they did not formally investigate this, based on theoretical frameworks and current research, conclusions were drawn about the potential protective affect adaptive coping strategies might have on siblings’ wellbeing. It therefore is an important area to investigate. Siblings are often viewed as the ‘unaffected’ ones when it comes to Duchenne Muscular Dystrophy. This research wants to understand this by investigating whether the quality of life of siblings is affected by Duchenne Muscular Dystrophy, whether sibling self-reported quality of life differs from caregiver-proxy ratings and whether adaptive coping strategies are protective. Participants will be undiagnosed siblings and caregivers of individuals with Duchenne Muscular Dystrophy. They will be recruited through the John Walton Muscular Dystrophy Research Centre in Newcastle-upon-Tyne and via online groups/forums (e.g. Action Duchenne), that are dedicated to families of individuals with Duchenne Muscular Dystrophy.
REC name
London - Chelsea Research Ethics Committee
REC reference
24/PR/0918
Date of REC Opinion
5 Sep 2024
REC opinion
Further Information Favourable Opinion