htp://www.ajod.org Open Access
African Journal of Disability
ISSN: (Online) 2226-7220, (Print) 2223-9170
Page 1 of 13 Original Research
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Authors:
Julia Jansen-van
Vuuren
1
Solomon Dawud
2
Rosemary Lysaght
1
Beata Batorowicz
1
Heather M. Aldersey
1
Afliatons:
1
School of Rehabilitaton
Therapy, Faculty of Health
Sciences, Queen’s University,
Kingston, Canada
2
Community Based
Rehabilitaton, University of
Gondar, Gondar, Ethiopia
Corresponding author:
Julia Jansen-van Vuuren,
17jmjv@queensu.ca
Dates:
Received: 17 Aug. 2022
Accepted: 27 Oct. 2022
Published: 16 Feb. 2023
How to cite this artcle:
Jansen-van Vuuren, J.,
Dawud, S., Lysaght,
R., Batorowicz, B. & Aldersey,
H.M., 2023, ‘Family quality of
life and children with
disability in Ethiopia: The role
of support providers’, African
Journal of Disability 12(0),
a1124. htps://doi.
org/10.4102/ajod.v12i0.1124
Copyright:
© 2023. The Authors.
Licensee: AOSIS. This work
is licensed under the
Creatve Commons
Atributon License.
Introducton
Family quality of life (FQOL) as a construct of interest with regard to disability has developed in
recognition of the effect of disability on the collective family unit (Brown, Kyrkou & Samuel 2016;
Samuel et al. 2012). Zuna et al. (2010) defined FQOL as ‘a dynamic sense of well-being of the
family, collectively and subjectively defined and informed by its members, in which individual
and family-level needs interact’ (p. 262). Building on the theory and framework of Zuna and
colleagues, Chiu et al. (2013) updated the FQOL framework to emphasise family strengths as well
as needs. According to this FQOL theory, individual-member and family-unit factors interact with
each other and support factors (at individual and family levels) within the context of systems,
policies, programmes and societal values, to determine FQOL and other child outcomes.
Research on FQOL has primarily occurred in high-income contexts, even though globally, 80% of
children with disabilities live in low-income contexts (United Nations International Children’s
Emergency Fund [UNICEF] 2020). Contextual values, norms and environments play a critical role
in FQOL; therefore, understanding FQOL from specific cultures and contexts is crucial to
developing a global understanding of FQOL and providing appropriate support. In addition,
FQOL research originated with a focus on families of children with intellectual and developmental
disabilities (IDD) (Brown et al. 2016), and this continues to comprise the majority of FQOL literature.
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.
Keywords: family quality of life; families; children with disabilities; support providers;
Ethiopia; support; spirituality.
Family quality of life and children with disability in
Ethiopia: The role of support providers
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