Quality of life and caregiving burden associated with parenting a person with Duchenne/Becker muscular dystrophy in Poland

Abstract

Abstract Background Duchenne and Becker muscular dystrophies (DBMD) are rare progressive, X-linked diseases of muscle wasting characterised by the early onset and prognosis of premature death. The aim of this study was to evaluate the impact of providing care for a person with DBMD on caregivers’ quality of life, perceived burden and financial well-being. Results 202 Polish caregivers of a person with DBMD were included and completed a self-administered, computer-assisted online survey. Results show that DBMD affects the quality of life of caregivers who score significantly lower than the national average in every domain: 85.1% of DBMD caregivers scored below the national average in the physical health domain; in the environmental domain 83.7%; in the social relationships domain 82.2%; and in the psychological domain 72.3%. It also demonstrates that DBMD is a source of severe burden (mean score of 35.3). Finally, we report that while some dimensions of respondents’ quality of life and perceived burden were associated with patients’ age and caregivers’ educational status, financial well-being was the most important predictor of respondents’ quality of life and caregiving burden. Conclusions To improve DBMD caregivers’ quality of life and alleviate their burden, future intervention programs should promote resiliency and active coping and develop a social support system and respite care. Additionally, it is crucial to provide caregivers with adequate financial resources to fulfil their needs.

Keywords

• Becker muscular dystrophy
• Caregiving burden
• Duchenne muscular dystrophy
• Family caregivers
• Quality of life