P.073 Factors associated with fatigue in children and adolescents with Duchenne muscular dystrophy: A Canada-wide cross-sectional survey

El-Aloul, B; Wei, Yuanyuan; Speechley, Kathy N.; Campbell, C

doi:10.1017/cjn.2017.157

Cited by 1 publication

(1 citation statement)

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“…The life-limiting nature of DMD strongly affects both patients and parents, who are required to navigate numerous challenges, which may include: fatigue , which can be acute (e.g., following exertion) or chronic (El-Aloul & Campbell, 2017); pain , which is often linked to muscle cramps and joint pain (Jacques et al, 2019); discomfort and sleep disturbance from wearing night splints to manage limb contractures (Apkon et al, 2018); constipation , as a result of limited physical activity (Kraus et al, 2016); loss of ambulation , which occurs by 12 years (Gissy et al, 2017); and late symptoms, which may include difficulties with speech and swallowing (dysphagia) (Toussaint et al, 2016). Approximately 26% of individuals with DMD have an intellectual disability while prevalence rates of ADHD are around 32% (Colvin et al, 2018), and co-occurrence of Autism spectrum disorder (ASD) was found in 21% of cases by Ricotti et al (2016).…”

Section: Theoretical and Research Basis For Treatmentmentioning

confidence: 99%

CBT for Anxiety Related to Parenting a Child with a Life-Limiting Neuromuscular Condition: A Single Case Study

Birdsey

2020

Clinical Case Studies

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Caring for a child with a neuromuscular condition such as Duchenne muscular dystrophy (DMD) presents many challenges, including managing the emotional impact of the diagnosis, managing extended periods of profound uncertainty, navigating the complexities of the healthcare system, managing the child’s physical symptoms, and supporting their emotional needs. Although it is encouraging that there is a growing body of research seeking to better understand the medical and treatment needs of those with DMD, the psychosocial needs of individuals and their families have traditionally been considered as ancillary to the child’s physical health needs. Consequently, there is limited research investigating the psychological wellbeing of those with DMD, and even less is known about the psychological wellbeing and needs of caregivers, who play a critical role in supporting their child. Caregivers experience multiple stressors and often encounter caring burden and high prevalence rates of anxiety and depression. This paper aims to explore the use of cognitive behavioral therapy (CBT) for comorbid anxiety and low mood in a parent of a child with DMD using a single case design. Results suggest that in the context of multiple stressors and significant life events, CBT was effective in improving mood and reducing symptoms of anxiety. This case highlights the value in offering support to parents of children with DMD and may have clinical implications for other neuromuscular and life-limiting conditions.

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