More frequent participation in social and leisure activities is associated with less caregiver burden and emotional distress for mothers of patients with spinal muscular atrophy (SMA), according to a Dutch study.
The research, “Participation and mental well-being of mothers of home-living patients with spinal muscular atrophy,” appeared in the journal Neuromuscular Disorders.
Prior studies have shown that parents of a child with SMA experience higher levels of burden and parental stress, which are worsened by factors such as greater disease severity and duration in their child, reduced social support, fewer family resources, and their older age.
Researchers at the University Medical Center Utrecht, The Netherlands, assessed the participation and mental well-being of parents of patients with SMA. Also, as professional care is organized differently for pediatric versus adult patients, the investigators compared the participation and mental well-being of caregivers in these two groups.
Participants were recruited through the Dutch national SMA registry, which contains data on medical history, disease severity, and current motor abilities. Specifically, parents of adults with SMA were recruited between September 2010 and December 2012, while parents of children with SMA were enrolled between December 2014 and October 2015. No patient had been treated with Spinraza (nusinersen, by Biogen), which was approved in 2016.
The analysis included mothers of 48 home-living patients (25 of them were male; 10 adults and 38 children), as they were the majority in the overall group of caregivers. The mothers’ mean age was 42.7 years.
Six mothers (13%) reported physical problems, most often reduced exercise capacity (in three cases).
Thirty-three patients (69%) had SMA type 2, five had SMA type 1, and 10 had SMA type 3. Patients’ mean age was 12.2 years — 8.9 years for children and 24.6 years for adults. Seven patients, including five children, needed assisted ventilation.
The mothers’ participation in daily life activities was tested using the Utrecht Scale for Evaluation of Rehabilitation-Participation, which assesses frequency, restrictions, and satisfaction associated with participation in work, social, and leisure activities.
Caregiver burden was evaluated using the Caregiver Strain Index questionnaire while emotional distress was analyzed with the Hospital Anxiety and Depression Scale. Patients’ SMA type, need for assisted ventilation, and motor function — as assessed with the Hammersmith Functional Motor Scale-Expanded — were also recorded.
Most mothers (77%) had paid work, while 38% had both paid and unpaid work activities. Also, 56% spent 25 or more weekly hours on household chores. All the mothers did not differ in scores of work-related and leisure activities, but mothers of adults engaged in outdoor activities more frequently, while those of children received more visits from family and friends.
The data further showed that most mothers (76%) reported a high level of caregiver burden — 73% for mothers of children and 88% for those of adults. However, these two groups did not statistically differ in their level of caregiver burden. Disturbed sleep, and the physical and time demands of caring for a patient with SMA were common complaints.
Twenty-five mothers had higher-than-normal emotional distress. Depression was experienced by 17 mothers, while 20 had anxiety symptoms.
Overall, mothers of patients with SMA were satisfied or very satisfied with their activities, especially with their relationships and contact with their partners, family, and friends. Mothers of children were more likely satisfied with going out than mothers of adults, while mothers of adults were more likely satisfied about going on day trips and other outdoor activities, and with leisure activities at home.
Importantly, higher caregiver burden and emotional distress significantly correlated with less frequent social/leisure activities. More frequent participation in such activities was also associated with higher levels of caregiver’s satisfaction.
“In conclusion, we found a high level of caregiver burden among mothers of patients with SMA,” the scientists wrote.
Social and leisure activities should be encouraged for mothers of patients with SMA, “in order to preserve or improve their well-being, and to enable them to continue to take care of their child,” they added.
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