Needs of families of children with intellectual and developmental disabilities in Addis Ababa

Aldersey, Heather Michelle; Ahmed, Ansha N; Tesfamichael, Haben N; Lotoski, Natasha

doi:10.4102/ajod.v9i0.735

Cited by 8 publications

(4 citation statements)

References 36 publications

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“…Boehm (2022) argues that a theological reflection on FQOL is necessary (but overlooked) because relationship with God gives all humans value and meaning and is important for flourishing. This study confirms other FQOL research in African contexts where spiritual beliefs are pervasive and critical for families' well-being and a major source of support for coping with the challenges of raising children with disabilities (Ajuwon & Brown 2012;Aldersey et al 2020;Jansen-van Vuuren et al 2022). In Ethiopia, religion and spirituality are inherent to cultural identity and influence views on child rearing, disability, health and well-being (Berie et al 2020;Kahissay, Fenta & Boon 2018).…”

Section: Spirituality and Family Quality Of Lifesupporting

confidence: 84%

Family quality of life and children with disability in Ethiopia: The role of support providers

Vuuren¹,

Dawud²,

Lysaght³

et al. 2023

Afr. j. disabil.

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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.

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Section: Spirituality and Family Quality Of Lifesupporting

confidence: 84%

Family quality of life and children with disability in Ethiopia: The role of support providers

Vuuren¹,

Dawud²,

Lysaght³

et al. 2023

Afr. j. disabil.

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“…Psychoeducational support is essential to equip families with the knowledge to care, train and support their children with ID and enable them to learn self-care strategies [56]. Consistent with other low-resource environments, families' cultural beliefs may impact how they raise children with ID [56,57], as highlighted through our qualitative finding that (some) participants associated ID with supernatural causes and beliefs.…”

Section: Discussionmentioning

confidence: 74%

Supporting Depressed Mothers of Young Children with Intellectual Disability: Feasibility of an Integrated Parenting Intervention in a Low-Income Setting

Chaudhry,

Sattar,

Kiran

et al. 2023

Children

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As a lifelong condition, intellectual disability (ID) remains a public health priority. Parents caring for children with ID experience serious challenges to their wellbeing, including depression, anxiety, stress and health-related quality of life. Integrated parenting interventions, which have been well evidenced for depressed mothers, may also effectively support depressed parents with a child with ID in low-resource settings such as Pakistan, and in turn optimise child outcomes. We conducted a mixed-method rater-blind feasibility randomised controlled trial, which assessed the feasibility and acceptability of the Learning Through Play in My Own Way Plus (LTP-IMOW Plus) intervention. Mothers who screened positive for depression (n = 26) with a young child (age 3–6 years) with ID were recruited from two low-resource community settings. Participants in the intervention arm (n = 13) received 12 group sessions of LTP-IMOW Plus and others (n = 13) received routine care. The intervention was feasible and acceptable with 100% retention and 100% session attendance. The intervention improved depression, anxiety, parenting stress and child socialisation score outcomes relative to the routine care arm. The framework utilised to analyse the qualitative interviews with seven participants at pre-intervention identified a range of struggles experienced by the mothers, and at post-intervention, found improved knowledge of child development and practices, improved mother–child relationships, recommendations for the intervention and perceived practical barriers and facilitators. The findings highlight the prospects for a clinical and cost-effective trial of an integrated parenting intervention to manage long-term parental mental health needs and improve child outcomes.

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“…Reddy et al, 2019; Woodgate et al, 2008) and their needs (e.g. Aldersey et al, 2020). However, as anthropological studies (e.g.…”

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confidence: 99%

“…In Ethiopia, there is a paucity of published literature on DD. The few published studies on DD conducted in Ethiopia highlighted lack of health and educational services for children with DD (Tekola et al, 2016; Zeleke et al, 2018), lack of awareness about DD (Tekola et al, 2016; Tilahun et al, 2016), unmet needs of families (Aldersey et al, 2020) and high level of stigma (Tekola et al, 2020a; Tilahun et al, 2016).…”

mentioning

confidence: 99%

The experiences of parents raising children with developmental disabilities in Ethiopia

Tekola

Kinfe

Bayouh

et al. 2022

Autism

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The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. Parents’ lived experiences can provide insights into local conceptualizations of developmental disabilities, challenges children and their families face and their needs. This study explores the experiences of parents (14 mothers and 4 fathers) raising children with developmental disabilities in urban and rural Ethiopia using in-depth interviews. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple and intersecting struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed. Lay abstract The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. We interviewed 14 mothers and 4 fathers in Addis Ababa and the rural town of Butajira to explore what life is like for parents caring for children with developmental disabilities in Ethiopia. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed.

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Needs of families of children with intellectual and developmental disabilities in Addis Ababa

Cited by 8 publications

References 36 publications

Family quality of life and children with disability in Ethiopia: The role of support providers

Family quality of life and children with disability in Ethiopia: The role of support providers

Supporting Depressed Mothers of Young Children with Intellectual Disability: Feasibility of an Integrated Parenting Intervention in a Low-Income Setting

The experiences of parents raising children with developmental disabilities in Ethiopia

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