Becoming a back-up carer: Parenting sons with Duchenne muscular dystrophy transitioning into adulthood

Abstract

The population of adults with Duchenne muscular dystrophy is increasing rapidly. However, information for individuals with DMD and their parents about the transition to adulthood is lacking; young adult sons and their parents may struggle to maintain smooth family functioning and well-being during this period. This study examined the process of change in parental behaviors during their son's transition. The participants were 18 parents with sons aged 15-30 years. Data were obtained from semi-structured interviews and analyzed using a grounded theory approach. Eleven categories of behaviors were identified across three domains: emotional, physical, and determination. The changes made by parents were directed toward becoming a back-up carer: letting go of some control but still being active participants in their sons' lives. We identified several issues important for well-being in the transition period: psychological support, the aging of the parents (the primary caregivers) and the concomitant emergency and specialized care needs, and parents' intervention in the self-determination of adult sons with DMD. The findings of this study may provide a rationale to advocate for policies to improve support for parents of sons with DMD transitioning to adulthood and provide information to help parents in their role as primary care providers.

The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions

“…Furthermore, DMD patients are known to have a greater risk of developmental and psychological problems (Banihani et al, 2015 ; Hinton et al, 2009 ; Ricotti et al, 2015 ; Steele et al, 2008 ). Therefore, it would be prudent to provide support in that area as well (Yamaguchi & Suzuki, 2015 ). Although patients experienced worry and anxiety in facing changes relating to the progression of DMD—perhaps because they did not want to face their current selves with the disease, or their future selves with a more advanced state—they did not reach out for information or support.…”

Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan

“…50 Without respite, family caregivers can experience loss in their personal life, leisure activities, and connections to the community. 51,52 Alternative providers should be instructed on daily routines and proper transfer techniques in anticipation of respite needs and emergency support.…”

Ableist Constructions of Time? Boys and Men with Duchenne Muscular Dystrophy Managing the Uncertainty of a Shorter Life

“…Boys and men living with DMD demonstrate the strengths and limitations of health, education and social care systems in the countries in which they live. Research, from a social science perspective about the experiences of boys, men and their families, suggests that there are considerable barriers to education, training, employment, accessible housing, integrated services, reliable social care support, and relationships, including romantic and sexual ones (Abbott, Jepson & Hastie 2016;Abbott et al 2019;Gibson et al 2007;Skyrme 2017;Yamaguchi and Suzuki 2015). These challenges often come to the fore as boys and young men make transitions between child and adult services and more broadly, at transitions over the life course relating to age, identity, and sense of self (Abbott and Carpenter 2014;Gibson et al 2014).…”