A cross-sectional qualitative interview study reported that caregiving for patients with nonsense mutation Duchenne muscular dystrophy (nmDMD) has significant physical, social, and emotional impacts on the caregiver.
Physical impacts included exhaustion, tiredness, and back pain and sciatica from frequently lifting and carrying the patient. Emotional effects included worry, stress, anxiety, grief, sadness, feelings of hopelessness, loneliness, isolation, and guilt. These emotional impacts negatively affected the caregivers’ quality of sleep, and the patient waking up with leg cramping disrupted their sleep.
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Time was a major factor impacted by caregiving. These caregivers had to take time off from work or reduce their hours to make time for doctor or physical therapy appointments during the workweek, or to address their psychological and physical problems related to caregiving. Childcare was difficult to find for these caregivers; they lacked time for self-care, hobbies, or socializing, often canceling plans or avoiding social situations. The burden of caregiving stressed relationships between partners and with the caregivers’ family members and friends.
Support from family, friends, coworkers, and other caregivers faced with similar situations was a significant moderating factor for these caregivers. The ability to find childcare also reduced the caregiving burden. And access to services for themselves, as well as their child, helped caregivers to manage their situation. For example, physical therapy reduced back pain from the constant lifting and carrying.
Counseling helped with the emotional and psychological aspects of caregiving. Social services and medical assistance eased the physical demands as the individual with nmDMD grew older. Lastly, stress and anxiety decreased among caregivers when treatment with ataluren improved their child’s well-being.
The 10 participants in this study performed at least 50% of the primary caregiving requirements. Three interviewers collected the information by transcribing the interviews, as well as having caregivers fill out questionnaires. According to the questionnaire, 7 participants received caregiving assistance from a partner, family member, or paid assistant.
The authors wrote that the study “may provide valuable insight to clinicians and regulators and help the DMD community illustrate the breadth of impact of the disease, and the unmet needs of caregivers. These findings also provide some qualitative evidence to support the disutility associated with caring for an individual with DMD.”
Williams K, Davidson I, Rance M, Buesch K, Acaster S. A qualitative study on the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy. J Patient Rep Outcomes. 2021;5(1):71. doi:10.1186/s41687-021-00344-8