Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy

Abstract

Care guidelines for Duchenne/Becker muscular dystrophy (DBMD) include recommendations for assessment of caregivers of patients with DBMD followed by proactive psychosocial interventions. To inform clinical assessment, this study described appraisals of psychosocial needs and caregiving facilitators of mothers of individuals with DBMD. Two hundred and five mothers completed an online survey. More than 50% endorsed unmet needs for managing uncertainty about the future and managing DBMD fears. Higher levels of unmet need were associated with less disease progression/earlier stage of DBMD (rho = -0.166 p = 0.02). Twenty-one percent regularly used respite care and 57% worried about allowing others to care for their child. Highly-endorsed care facilitators included partner relationships (63%), child's approach to life (59%), and family relationships (49%). Our findings highlight the importance of psychological and social support for caregivers. Starting when children are young, clinicians should assess caregivers' unmet psychological needs, particularly uncertainty and fear. Exploring needs and facilitators may allow clinics to target and customize interventions that build upon existing strengths and supports. Our findings have implications for efforts to promote early diagnosis and newborn screening, in that increased needs in mothers of younger children should be anticipated and built into counseling. Further research can assess whether and how unmet needs change as new therapies become available.

Psychosocial Management of the Patient With Duchenne Muscular Dystrophy

“…Physicians and the care coordinator should be in regular contact with caregivers at this stage and project a message of hope as well as caring, empathy, and teamwork. 17,21 Caregiver interventions focused on enhancing the mother's resilience and social support as well as enhancing positive perceptions of the impact of disease have been found to be the most beneficial. 21 -23 Genetic counseling also may play an important role but should be done with consideration of the psychological impact of a carrier diagnosis on the mothers and grandmothers of children with DMD, which may include profound, long-lasting guilt and a strong sense of responsibility for the genetic variants' occurrence in the family.…”

An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne’s Muscular Dystrophy

“…Psycho-social support should start when the child is young, and those involved in caring for families should assess unmet needs. Being proactive in identifying the need for help and understanding the family's fears and uncertainty also helps in the identification of resources needed to prioritize and customize interventions building on family strengths [29].…”

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

“…Although there is recognition in the predominantly medical literature that DMD causes significant emotional and caring burden on caregivers (Peay et al, 2015), with high levels of unmet psychosocial needs amongst mothers in particular (Peay et al, 2018), there is an absence of psychological literature addressing recommended interventions for those caring for individuals with DMD. Consequently, when referrals are made for psychology support, clinicians do not have specific guidance on how best to treat the psychological distress of caregivers of children with neuromuscular conditions.…”