The psycho-social and emotional experience of physical disablement for children and their families in Malawi
Lorna Bourke, Liverpool Hope University
Co-author(s):
Gary Sharp
Abstract
The purpose of the study is to advance understanding of the psycho-social and emotional impact of disablement for children with physical disabilities and their families who are reliant on the support of Community-Based Rehabilitation (CBR) programes which are provided as low-cost health-care within collective communities in developing countries such as Malawi. CBR is a strategy that undertakes to not only provide a therapeutic environment but to actively engage in changing prevailing attitudes that promote physical, psycho-social and emotional barriers to the inclusion of people with disabilities into mainstream community activity (ILO, WHO, UNESCO, 1994; Thomas & Thomas, 2003; WHO, 2001). Notably, Swain, Finkelstein, French & Oliver (1993) argued that it is unlikely the wider constraints generated by the political, cultural and social environment could be accounted for adequately within the medical rehabilitative approach.
Nine children with physical impairments participated, as well as five parents, one caregiver and three professional medical clinicians. A qualitative methodology was employed and thematic analyses conducted on the interview data. Four superordinate themes emerged to encapsulate the beliefs and experiences of the participants. They include; limitations to daily living skills; social-emotional support; parental interaction with child; inclusion in education. The findings suggest there are tensions between the aims of medical rehabilitative health-care, how far the families can be responsible for them and the way in which the children want and need to live their lives.
The children emphasised the importance of their social relationships and either their potential for or lack of involvement in play activities. They were much less likely to provide detailed reports of their concerns regarding their functional limitation in terms of the four daily living skills (UN, 1993) or their engagement in physiotherapy/occupational therapy. In attempting to assist children to reach a stage of optimum functioning where they believed they could participate in education and community activity, the CBR team did not necessarily minimise the exclusionary and discriminatory practices the children and their families were subjected to. CBR is required to prepare children and the prevailing Malawian society for both independence and interdependence. In order for this to occur, this research supports the conclusions drawn by Boyce & Paterson (2002), that suggest more politicised and community focused involvement should be the main starting point to the rehabilitation services provided.