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
Summary of Research
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.Summary of Results
This study explored how Duchenne muscular dystrophy (DMD) shapes the psychosocial experiences of siblings (how their emotions, relationships and everyday lives are affected) and how they cope with these experiences, from the perspectives of parents.What is Duchenne muscular dystrophy (DMD)?
Duchenne muscular dystrophy (DMD) is a rare genetic condition that mainly affects boys. It causes progressive muscle weakness, leading to increasing physical disability over time, including loss of mobility and later heart and breathing complications. DMD also affects psychological, cognitive and behavioural processes with there being a high co-occurring rate of neurodivergent diagnosis (e.g. Autism and attention deficit hyperactivity disorder), anxiety and learning difficulties. Although treatments have improved over time, DMD remains a life-limiting condition and there is currently no cure.Summary of results
Six parents from across the UK took part in interviews. Parents described three main ways DMD influenced siblings' experiences. Firstly, siblings were seen to be living in the shadow of DMD. Parents felt siblings often experienced reduced parental attention and that family activities were changed or cancelled because of their brother's needs. Although siblings often understood why this happened, parents felt they sometimes hid their own feelings to avoid upsetting others.Secondly, parents described siblings sacrificing their own needs to ‘keep the peace’ within the family. This included helping to care for their brother or giving up their own preferences to reduce conflict and protect other family members from additional stress.
Finally, parents described how siblings could not avoid learning about DMD through their everyday lives. As they became more aware of the condition and its progression, parents felt this could be emotionally difficult. Some siblings appeared to avoid talking about DMD as a way of coping with these feelings.
Overall, the findings suggest that siblings may benefit from opportunities to share their experiences, receive age-appropriate information about DMD at their own pace, and access support alongside their brother's care. The findings also highlight the importance of healthcare professionals routinely considering siblings' needs and recognising that some coping strategies, such as putting their own needs second may mask underlying distress. As these findings are based on parents' perspectives, future research should explore siblings' own experiences to help develop support that meets their needs.
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