A new study reports that mothers of children with cerebral palsy in Nigeria face a multitude of psychosocial challenges that are often ignored. The researchers called for better education and programs to support these families.
The study, “Psychosocial problems among mothers of children with cerebral palsy attending physiotherapy outpatient department of two selected tertiary health centres in Ogun state: A pilot study,” was published in the journal AIMS Medical Science.
Cerebral palsy, like many chronic and disabling conditions, can come with a host of social and emotional (psychosocial) challenges, in addition to the health problems caused by the disease itself. Besides adding challenges for the person with the disease, that person’s caretaker may also have psychosocial struggles. For children with cerebral palsy, caretakers are often parents, but the emotional burden placed on these parents is seldom studied.
To gain insight into the challenges faced by parents of children with cerebral palsy, researchers held focus group discussions at two hospitals in Ogun state, Nigeria.
A total of seven (three and four in each of the two focus groups) mothers of children with cerebral palsy who were being treated at the hospitals participated; they were asked a predetermined series of questions about the kinds of psychosocial challenges they faced.
The researchers analyzed their responses qualitatively (noting what was said and not converting the information into numbers for analysis).
The mothers’ challenges covered a range of topics, from the emotional to the social to the financial.
Children’s dependence on their parents was a consistent theme that caused feeling of distress. “I am the only one that carries him, and this hinders me from going out,” one mother said.
Others spoke of not being able to go to work or having their sleep interrupted. One said, “I am not free.” This dependence also took a physical toll in the form of fatigue and back pain.
As the mothers were predominantly from lower socioeconomic backgrounds, financial burdens were also a major concern. Many reported being unable to afford medicines and other treatments, a problem compounded in some cases by being unable to work.
The mothers also reported feeling anxious about their children’s futures and how their children are perceived by society. Some report having relatives who won’t interact with the children for fear that cerebral palsy is contagious. In contrast, some mothers said that their neighbors prayed for their children.
This was generally indicative of a lack of understanding of the disease, which extended to the mothers themselves — some reported feelings of guilt, with an underlying assumption that they had somehow caused their children’s disease. To the researchers, these statements highlighted the need for better education about cerebral palsy, both for caregivers and for the public.
The results of this study “should be considered with caution. Small convenient sample of mothers of CP involved in the study may limit generalizability of the results to entire population,” the researchers stated.
However, the work provides preliminary information that may help policymakers and healthcare providers provide family-centered care, which according to researchers is crucial for “adequate care and support of both children with cerebral palsy and their families.”
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