A “holistic approach” including training in managing children with CP along with “psychological interventions” would improve quality of life for these mothers, the researchers said.
The study, “Factors associated with quality of life among mothers of children with cerebral palsy,” was published in the International Journal of Nursing Practice.
Researchers in Iran asked mothers to complete a series of questionnaires to evaluate the impact of fatigue, depression, and burden of care on their quality of life (QoL).
“The burden of caregiving can adversely affect the physical, psychosocial, and mental health of caregivers, leading to poor quality of care and unmet patient need,” the researchers said.
Children with disabilities rely on their primary caregivers — often their parents — for assistance with daily life activities, treatment, financial and emotional support. The well-being of caregivers is closely linked to the well-being of the children they care for, so the disease burden can take a serious toll on their overall health.
The study included 203 mothers of children with spastic CP, ages 4-14. All mothers were asked to complete four different questionnaires: the Caregiver Difficulties Scale to assess burden of care; the Fatigue Severity Scale to assess fatigue; the Beck Depression Inventory-II to evaluate depression; and the World Health Organization‘s Quality of Life Questionnaire to evaluate their QoL.
Mothers’ level of education and employment status were found to be directly correlated with their QoL scores. Those who had a jobs and higher levels of education tended to have higher QoL scores than those who were unemployed or less educated.
Higher levels of education “help mothers come up with coping strategies to deal with difficulties,” the researchers said. And “having a job with a fair salary is associated with the psychological or physical well-being of parents,” which “results in fewer psychological life stressors and lower financial burden, and improves their psychological and physical health,” they said.
Training in techniques for tasks such as feeding, carrying, and managing the self-care of children could be given to help parents cope, they said.
More severe types of CP were associated with lower caregiver QoL scores, with mothers of children with tetraplegia (muscle impairment in all limbs) having lower scores than mothers of children with milder disabilities.
Fatigue, also associated with lower QoL scores, seemed to be mainly driven by physical tiredness, though the authors said psychological factors could also play a role. They found a similar relationship between depression and low QoL scores.
“In this study, the significant predictive power of caregivers’ burden, depression, and fatigue was confirmed, implying that interventions should lay emphasis on the empowerment of family caregivers by providing proper training, supporting them, and facilitating access to necessary resources in order for them to handle the burden of care better,” the researchers said.
“Future studies are needed to find and investigate practical interventions to improve the QoL of mothers,” they said.