Resumo

JANSEN-VAN VUUREN, Julia et al. Family quality of life and children with disability in Ethiopia: The role of support providers. Afr. j. disabil. (Online) [online]. 2023, vol.12, pp.1-13. ISSN 2226-7220.  http://dx.doi.org/10.4102/ajod.v12i0.1124.

BACKGROUND: Family quality of life (FQOL) is an important outcome for families of children with disabilities globally and provision of support is associated with enhanced FQOL. However, FQOL research primarily focuses on conceptualisation and measurement, and originates from high-income contexts despite the fact that most children with disabilities live in low-income countries. OBJECTIVES: The authors examined how Ethiopian disability support providers practically contribute to meeting the needs of families of children with disabilities to enhance FQOL. METHOD: Building on a previous study exploring Ethiopian families' perspectives on FQOL, the authors used an exploratory descriptive qualitative approach to interview various support providers. Interviews were conducted virtually (because of the coronavirus disease 2019 [COVID-19] pandemic) in English or with interpreting assistance. Audio-recorded interviews were transcribed verbatim and analysed thematically. RESULTS: Support providers affirmed what families had described as important for FQOL - spirituality, relationships, self-sufficiency - and recognised their enormous support needs. They described various ways to support families - emotionally, physically, materially and informationally. They also expressed challenges and their need for support to meet families' needs. CONCLUSION: Ethiopian families of children with disabilities need holistic support that incorporates spirituality, the whole family's needs and disability awareness-raising. Collaborative and committed engagement from all stakeholders is necessary to support Ethiopian families to flourish. CONTRIBUTION: This study contributes to global understandings of FQOL and describes practical approaches to support families of children with disabilities in an African context. The findings of this study highlight the influence of spirituality, relationships, self-sufficiency, poverty and stigma and the need for holistic support and disability awareness-raising to enhance FQOL.

Palavras-chave : family quality of life; families; children with disabilities; support providers; Ethiopia; support; spirituality.

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