Exploring the support needs of Pakistani families with disabled children: A participatory action research study

Abstract

Pakistani families with disabled children are among the most disadvantaged population groups in the UK. Previous research has indicated difficulties with accessing support services as well as problematic attitudes towards disability within the Pakistani community. As no substantial improvement in their situation was evidenced since early studies in the 1990s, a participatory action research study was undertaken with six Pakistani families to explore how an actionoriented, emancipatory approach could facilitate them to explore their support needs and how these might be met, in further depth. An occupational justice perspective was used to clarify how cultural and familial expectations influenced family members’ occupational balance and well-being. After an exploratory phase in which all family members were interviewed and family interactions observed in their own homes, three action research groups were formed for women, men and children respectively. Each group carried out their own action research around their chosen topic. Through participation in the project the participants gained important skills as well as a better understanding of their situation and how they could be more proactive in improving it. Furthermore, the fact that all family members were actively involved in the project helped them to start implementing changes in behaviour and communication at home. Key findings of the study were that the importance of faith in accepting the disabled child and dealing with negative community attitudes needs to be recognised and fostered; that the social model of disability needs to be more explicit about the influence of religion and culture on the lived experience of disabled people; that the central support need of parents is for practitioners to build up a supportive relationship with them as persons in their own right; and that (the lack of) belongingness had a very significant impact on the disabled child’s and their mothers’ well-being.