A Mixed Methods Study to Design and Test Effectiveness of a Psycho-social Training Intervention on Psychological Health of Parents for Intellectually Disabled Children in Malawi

Background Information and Introduction:

It is argued that 85% of children with disability live in resource poor countries where there are few available disability services. A majority of these children, including their carers, suffer the double burden of disability and its associated stigmatization, leading to a marginalized life.

There has been an increase in disability prevalence in Malawi over the past three decades A 1983 National Statistical Office Survey of Handicapped Persons in Malawi, using head count and snowball sampling placed the rate of disability in the population at 2.9% and 10 years later it was estimated at 2%. However in a recent prevalence study in Mzuzu city, it was found that 154 out of the 780 children sampled (aged 0-18 years) have at least some kind of disability according to the Ten Question Questionnaire (a screening tool for disability in low income settings comprising five questions on cognitive development; two questions on motor development; and one question each regarding vision, hearing and seizures), representing 19.7% prevalence. The low prevalence in the earlier surveys may not have addressed multiple disabilities unlike in this study where a variety of disabilities including physical, intellectual and self-care were studied. In Mzuzu a significant burden of care was found among guardians of these children. Much of this related to stigma and cultural misconceptions about disability and its causes. Physical, social and psychological burdens were reported leading to children being locked up for fear of carrying heavy weight on the back as well as stigma; marriage disruptions and divorces between carers ; and general distress as a result of having a disabled child.

It is also clear therefore that in addition to the high burden of disease from childhood disability, mental health problems (in particular - depression) in carers only add to this burden of disease. To add on the issue of disability, asserts that depressive disorders are the leading causes of years lost due to disability in 2004.

There is no cure for most disabilities, including intellectual disabilities, but psycho-social interventions can help parents and carers of children with intellectual disabilities. Traditionally, researchers have believed that parenting these children has negative impacts on carers. These include increased psychological and physical health problems for carers; and physical, social, and financial distress to the whole family. This impact most on parents, as they are virtually the only constant carers; leading often to increased divorce rates. Recent studies from high income settings have demonstrated that these negative impacts are not as severe as once thought. A recent 35-year long study, found no significant differences between parents of adult children with and without intellectual disabilities on measures of psychological well-being, depression, physical health, and divorce.