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.

Parenting children with intellectual disabilities in Malawi: the impact that reaches beyond coping?

BACKGROUND: Rates of disability are high in resource poor settings with 85% of children with disabilities living in these settings. Long-term caregiving for disabled children is associated with fatigue, financial difficulties, parenting distress and other psychological issues. While such parents of children have repeatedly highlighted their feelings of discrimination, stigma and exclusion, leading to mental health issues, there is little research from the developing world addressing these issues. RESEARCH OBJECTIVES: This study aims to explore psychological experiences of parents caring for children with intellectual disabilities; understand their mechanisms of coping and their psychosocial needs in Malawi. METHODOLOGY: This study used a qualitative phenomenological design. We purposively sampled parents who had children diagnosed with intellectual disability from two clinics in two cities in Malawi. Between January 2015 and March 2015, we conducted 10 focus group discussions and four in-depth interviews. All ethical study procedures were carefully followed. All interviews were tape-recorded, transcribed and translated from vernacular to English. Thematic approach of data analysis was adopted to understand the data. FINDINGS: Caring for intellectually disabled children comes with a number of challenges. Parents have limited access to services for their children let alone for their own psychological issues; they experience stigma and discrimination, have mental health issues resulting from the caring role, have suicidal ideas and in some cases have even been coerced by neighbours to kill their disabled child. To manage these issues, most parents cope through their spirituality. DISCUSSION AND RECOMMENDATION: Apart from suicide and filicide, the findings of this study are similar to those performed in other countries. It is recommended that parents' psychological issues be managed concurrently when providing services for their children. There is also a need to develop psychosocial training interventions to address the needs of the parents of these children.