OXFORD, Miss. – For parents of children with disabilities, finding time to focus on themselves may be difficult. However, a new study finds that the right coping strategies and resilience can significantly help manage the challenges of raising children with special needs.
That is the key finding from research published in the International Journal of Developmental Disabilities that studied families with neurodevelopmentally disabled children in Ghana to see what helps parents cultivate healthy, happy lives for themselves and their children.
“Our main interest was looking at how psychological distress and coping with stress impact these parents, their resilience and also their quality of life or well-being,” said Francis Boateng, University of Mississippi associate professor of criminal justice and legal studies.
“We know that it's not easy. These parents go through a lot of challenges.”
Despite the study being conducted overseas, the findings apply to all parents of neurodevelopmentally disabled children, Boateng said. Neurodevelopmental disabilities – which affect brain development and function – include conditions such as Tourette’s syndrome, autism spectrum disorder, attention deficit hyperactivity disorder and cerebral palsy.
Regardless of the severity of the child’s condition, any neurodevelopmental disability increases distress in the parent.
“Psychological distress predicted quality of life,” said Mabel Oti-Boadi, senior lecturer at the University of Ghana's Department of Psychology and lead author on the study. “When a parent has high levels of psychological distress, it reduces their quality of life, and there's also a direct effect on parents’ resilience.”
The researchers found that emotion-focused coping increases resilience in these parents. Emotion-focused coping is a strategy for managing stress by regulating a person’s emotional response as opposed to looking for ways to solve the problem directly. Having a child with a neurodevelopmental disability is out of the parent’s control, but the parent’s emotions surrounding that subject are not.
This approach is useful when dealing with circumstances that are beyond one's control, Boateng said.
"Prior studies have observed that this type of coping strategy does have a negative impact on their quality of life, but we didn't find any such results in our study, and that is surprising,” he said.
The researchers hope their results will inform decisions at the community and policy level to support parents of neurodevelopmentally disabled children.
In Ghana, many conditions that are considered neurodevelopmental disabilities are stigmatized, with parents bearing the brunt of the blame. The United States, too, still has vestiges of stigma surrounding disabled people and children with disabilities.
“In this part of our world, many have certain spiritual or cultural beliefs that these conditions are the result of some spiritual punishment and curse,” Oti-Boadi said. “That puts stress on these families because many feel isolated and are not able to have a job or use transportation, so they withdraw from everything.”
Instead, the researchers hope to foster social supports such as family, friends or the community. Group therapy sessions allow parents to connect with others like them and feel less alone, the researchers said.
“Parents are rising up above their problems, and they are bouncing back from the stresses they are going through," Oti-Boadi said. “They're creating awareness and hoping something good will come out of this for their families.
“Every one of us – whether you are in the West or in a developing country – we should all work together to help these families and build their resilience. When we are strong together, we can take on these problems.”
Journal
International Journal of Developmental Disabilities