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Van Boekholt T.A.1, Meershoek A.1, Pokhrel S.2,3, Mareschal G.2, Retis C.4, Newar P.2
1Maastricht University, Maastricht, Netherlands, 2Handicap International Nepal, Kathmandu, Nepal, 3Nepal Physiotherapy Association, Kathmandu, Nepal, 4Handicap International, Phnom Penh, Cambodia
Background: It has been recognized that families are affected by the disability of the child they are living with. Therefore, family-centered interventions have been designed to address the needs of these families. In order to evaluate the effectiveness of these programs, family Quality of Life is measured as an outcome. However, assessment of family Quality of Life is mainly based on research in affluent countries and not in low resourced countries, such as Nepal, where specific cultural and socio-economic aspects influence the access to care and the lived experience and perception of families with children with disabilities.
Purpose: This study aimed to identify the domains of family Quality of Life in Nepal among families living with a child with disability and adjust the currently existing assessment tools to the local setting.
Methods: A qualitative design with focus groups and home visits was used to assess the perspectives of 19 families in 6 districts and 15 health care workers (e.g. physiotherapists, community workers) who are staff of local rehabilitation services supported by Handicap International in 3 districts. A purposive sampling method was used to ensure a maximum variation in role of family member, geography, kind and severity of disability of the child, religion, socio-economic status, level of education and casts. An inductive analysis method was used to identify all themes and subthemes of the topic.
Results: Family Quality of Life was mostly affected in domains such as family support and relations, community involvement and influence of values, (potential) career and financial status, disability specific support (rehabilitation), and concerns about the future in this sample. All domains were associated with mental stress, which in turn affected the Quality of Life of these families, in particular mothers. Several barriers such as language, translation issues and difficulties in understanding abstract and western concepts were identified while administrating the questionnaires, together with issues on privacy in interview settings.
Conclusion(s): The impact on a sample of families living with a child with disability is severe and justifies the adoption of a multi-disciplinary and systemic approach which includes families in the rehabilitation programmes. Considering the cultural and contextual barriers it could be argued whether using a family Quality of Life questionnaire is appropriate in assessing the impact of disability on families in Nepal. However, the identified domains of family Quality of Life can guide the design and provision of interventions to meet the needs of families. Further research is needed to explore factors influencing the identified domains and the linkages between them in similar settings.
Implications: The identification of domains and causes of dissatisfaction on poor family Quality of Life in Nepal can help adjust rehabilitation interventions and health and social policy frameworks. Interviewing in a secluded and safe environment could aid in getting more insight on the impact on the family relationships, and mothers specifically. Family-centered approaches should be used to address the issues encountered by families on a daily basis. Training health care workers, including physiotherapists, on the components of family quality of life and further developing family-centered approaches is necessary.
Funding acknowledgements: The authors would like to thank USAID who funds the project “Strengthening Rehabilitation In District Environs” and Maastricht University.
Topic: Professional issues
Ethics approval: Ethics approval for was obtained from the Nepal Health Research Council.
All authors, affiliations and abstracts have been published as submitted.
