The experience of parents of adult sons with Duchenne muscular dystrophy regarding their prolonged roles as primary caregivers: a serial qualitative study

Abstract

Purpose: Mechanical ventilation has allowed a greater number of patients with Duchenne muscular dystrophy (DMD) to transition into adulthood. However, the role of a child’s parent as a caregiver lasts throughout the child’s lifetime. We explored parents’ experiences of prolonged caregiving using serial interviews, analyzed using constructivist grounded theory.

Materials and methods: Fourteen parents (average age 53.9 years) with sons with DMD (average age 23.2 years) were interviewed two to four times, over a 3-year period. Data were analyzed using a grounded theory approach.

Results: Two categories of responses were defined as strengths, and four as weaknesses. The strengths were related to family member support and confidence in parenting ability. The weaknesses were related to the anticipation of aging with the ongoing burden of caring for adult sons, regrets, sharing of responsibility versus having a fixed role as the primary caregiver, and economic burden. The weaknesses became more pronounced as the duration of caregiving increased. Parents’ acceptance of and immobilization in their role of primary caregiver led to prolonged derivative dependency.

Conclusion: Practical support for parental caregivers, who experience a marked increase in the duration of their caregiving role while facing their own aging-related challenges, are required.

Implications for Rehabilitation

• Children with DMD are living longer and are transitioning into adulthood; a successful transition involves becoming as independent as possible and maintaining a positive sense of personal identity.

• Despite entering adulthood, the parental caregiver’s caregiving role continues.

• Rehabilitation professionals, who are able to provide long-term, continued support from childhood into adulthood, should be aware that parental caregivers’ weakness are exacerbated as the duration of caregiving increases.

• Families affected by DMD require multifaceted support that should include support for the parental caregiver.

Keywords:

• Parenting
• disability
• care-dependent
• burden of care
• aging
• transition to adulthood

Acknowledgements

We are grateful to the parental caregivers who participated in this study. This work was supported by the Umi-Kinen Foundation Japan for the promotion of home medical care.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

This work was supported by the Umi-Kinen Foundation Japan for the promotion of home medical care.