Researching the support needs of Pakistani families with disabled children in the UK

Abstract

Pakistani families living in the UK form one of the most disadvantaged sections of the society. Key issues faced relate to poverty, high unemployment, ill health, low levels of English proficiency, rising ‘Islamophobia’, men feeling misunderstood and misrepresented, and a lack of faith/culture appropriate facilities. When a disabled child is born, additional issues are added to this already challenging situation. These include a significantly higher incidence of disability, high costs of raising a disabled child, being less likely to receive benefits, poor access to health and social care, negative attitudes towards disability within the community and a high incidence of depression and anxiety among primary carers. Although a considerable body of research-based evidence has been available for well over a decade, no significant improvement in service provision to these families has been seen. The paper suggests that a critical paradigm of research, with emancipatory goals, is needed and that participatory action research be used to help Pakistani families gain better understanding of their own support needs and to provide better skills to be able to ensure that these needs will be met more effectively within the family, in the community and through mainstream services.