|Title||The impact of the disability of a family member on the rest of the family in the Eastern Region of Nepal.|
|Authors||van den Berg I|
|Academic Department||Vrije Universiteit Amsterdam|
|Type of Work||Master Thesis|
|Year of Publication||2012|
|Number of Pages||73|
|Keywords||Disability, EMIC community scale, Family, Leprosy, Participation scale, Stigma|
Community-based rehabilitation programmes, aiming at reducing the impact of disability, include persons with disabilities as well as their families. However, little is known about the problems these families face due to the disability of their family member. The aim of this study was to gain more insight into the impact of having a family member with a disability on the rest of the family, including children, in the Eastern Region of Nepal. A total of 117 subjects were included in this study, divided into four groups, respectively adult family members of persons with disabilities, children with a person with a disability in their family, grandparents of persons with disabilities, and a control group drawn from the general population. Socio-demographics, participation restrictions, and perceived stigma were compared between adult family members of persons with disabilities and the control group. Participation restrictions were measured by means of the Participation Scale and perceived stigma was measured by means of the EMIC community scale. All family members of persons with disabilities were asked about their feelings, experiences, and resulting problems from the disability of their family member in semi-structured in-depth interviews. Results indicate that adult family members of persons with disabilities experience significantly more participation restrictions than people from the general population. Family income is significantly lower in families with persons with disabilities and perceived stigma in the investigated communities is high. Several different problems, of which the origin could be identified at the government level, the community level, the family level, and the individual level, were reported by family members of all three groups. In conclusion, it appears that the disability of a family member could have significant negative consequences on both adults and children within their families and to less extent on grandparents in families in the Eastern Region of Nepal. Additional research is needed to be able to support these families in the right way in the future.