The meaning of participation for children in Malawi: insights from children and caregivers

BACKGROUND Global rates of childhood disability are high and are estimated through tools that focus on impairment, functioning and activity. The International Classification of Functioning, Disability and Health has promoted a framework to define disability more broadly and to include participation. New outcome measures have now been created to assess participation of children with disabilities for use in research and clinical practice. In order to use these in other cultural contexts, the validity of concepts and tools developed should be evaluated prior to use. We aim to create a tool that would be relevant and valid to the cultural context of Malawi, but to do so, we first need to understand what participation means to children in Malawi. AIM The aim of this study is to explore what participation means for children (including those with and without disability) in rural Northern Malawi. METHODS We used semi-structured interviews, focus group discussions, participatory action research and direct observations. Sixty-four participants were involved including children (8-18 years) with (14) and without disabilities (17), carers of children with (8) and without (6) disabilities, community members (14) and professionals/healthcare workers (5). Data analysis was carried out using the 'framework' approach. RESULTS Activities reported by children, carers and community members fell within seven main themes or areas of participation. These include contribution to family life (chores and work), social activities (communicating and being with others), social activities (unstructured play), structured and organized activities, activities of daily living, education and schooling and entertainment (listening to and watching media). CONCLUSIONS This study provides concepts and ideas that may be utilized in developing a suitable measure of participation of children with disabilities for rural African settings. Many of the most important activities for all children relate to family and day-to-day social life.