African families’ and caregivers’ experiences of raising a child with intellectual disability: A narrative synthesis of qualitative studies

Mkabile, Siyabulela; Garrun, Kathrine L; Shelton, Mary; Swartz, Leslie

doi:10.4102/ajod.v10i0.827

Cited by 27 publications

(25 citation statements)

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“…Existing literature shows that caregivers of children with developmental disabilities report more negative experiences than caregivers of children without developmental disabilities, and that this is exacerbated in low-income settings [ 29 ]. This includes caregiver mental health problems such as depression and anxiety [ 30 – 33 ].…”

Section: Discussionmentioning

confidence: 99%

Early detection and intervention for young children with early developmental disabilities in Western Uganda: a mixed-methods evaluation

et al. 2022

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Background Early support for children with developmental disabilities is crucial but frequently unavailable in low-resource settings. We conducted a mixed-methods evaluation to assess the feasibility, acceptability, and impact of a programme of early detection and intervention for young children with developmental disabilities in Western Uganda. Methods Early child development training for healthcare workers (HCWs) was implemented in three rural districts, and attendance was tracked. HCW knowledge and confidence were assessed pre-/post-intervention, and referral numbers tracked to evaluate impact. Facilitators were trained and mentored to deliver a participatory, group, early intervention programme (EIP) for young children with developmental disabilities and their families. Facilitators were tracked as they were identified, trained, and delivered the intervention, and attendance of families was tracked. Pre−/post-intervention assessments evaluated changes in family quality of life (PedsQL 2.0, Family Impact Module), and child nutritional outcomes. Focus group discussions with stakeholders also assessed feasibility, acceptability and impact. Results Overall, 93 HCWs from 45 healthcare facilities received training. In the pre−/post-evaluation, median knowledge and confidence scores increased significantly (from 4.0 to 7.0 and from 2.7 to 4.7, respectively (p < 0.001)). HCWs reported feeling empowered to refer and offer care for families with a young child with disability. Referral rates increased significantly from 148 to 251 per annum (70%; p = 0.03). Eleven EIP facilitators were trained, and all delivered the intervention; 84 families were enrolled, of which 78% attended at least 6 out of 10 modules. Amongst those with paired pre−/post-intervention data (n = 48), total family quality of life scores increased significantly (21%, p < 0.001). Improvements were seen across all domains of quality of life, with the largest impacts on emotional functioning and social functioning (p < 0.001). The programme was acceptable to caregivers and facilitators. Caregivers reported improved knowledge, family relationships, hope, emotional wellbeing, and reduced self-stigma. Conclusions A programme of early detection and intervention for children with early developmental disabilities and their families was feasible and acceptable in a rural community-based Ugandan setting. HCW training positively impacted knowledge, confidence, attitudes, and referral rates. Families enrolled to the EIP reported significant improvements in quality of life. Important programmatic barriers identified included geographical spread, poverty, gender inequality, and stigma.

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Section: Discussionmentioning

confidence: 99%

Early detection and intervention for young children with early developmental disabilities in Western Uganda: a mixed-methods evaluation

et al. 2022

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“…Nevertheless, the rearing of any child by the family requires support and availability of resources (McKenzie & McConkey 2016 ). South Africa is one of the upper middle-income countries where the majority of black African families continue to live in poverty and lack of specialised services for ID (Mkabile et al 2021 ). Few studies have been conducted on support experiences of families of children with ID in South Africa and little is known about the survival of these families to cater for the needs of their children with ID.…”

Section: Introductionmentioning

confidence: 99%

The support needs of families raising children with intellectual disability

Modula

2022

African Journal of Disability

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Background: The deinstitutionalisation of children suffering from intellectual disability (ID) is a global phenomenon. Most families raising such children experience a range of difficulties and require supportive systems to cope with physical, social and mental demands in a home environment.Objectives: The aim of this study was to explore and describe the support needs provided to families raising children with ID in the Capricorn District of the Limpopo province, South Africa.Method: In-depth individual interviews and focus group discussions were conducted with 26 families directly affected by the experience of caring for and raising children with ID in Capricorn District of the Limpopo province. Inductive thematic analysis was used to identify, categorise and organise the responses of the participants converted into intelligible statements with the assistance of Atlas. Ti version 8.Results: Participants identified support needs on information regarding care and management of the children with intellectual disabilities, professional collaboration on safety of the children, community involvement on the rearing of the children and improvement of their living conditions as most of the families and households were female-headed, of low income and needed further monetary support. Overall, the totality of challenges, demands and inadequate support services coalesced in marginalisation of children with ID and their families.Conclusion: Families raising children with ID are diverse and complex with unique support needs. Therefore, a multilayered approach should be taken to address the concerns and improve the families’ quality of life. A foreseen challenge would be to secure the involvement of the stakeholders representing a variety of sectors, organisations and services.

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“…Despite substantial attention paid to stigma towards people with mental health conditions (Lauber et al, 2003; Morgan et al, 2018), equivalent research in the field of ID has been limited, particularly in low and middle‐income countries (Jansen‐van Vuuren & Aldersey, 2020; Scior, Potts, & Furnham, 2013; Wang et al, 2021). Cross cultural studies have exposed differences in the level of awareness of ID and desire of social distance among lay people from different sociocultural backgrounds (Jansen‐van Vuuren & Aldersey, 2020; McConkey et al, 2021; Mkabile et al, 2021). Research has suggested that stigmatisation is more prominent in cultures with a collectivist ethos that tend to avoid emotional expressions to maintain the family's reputation (Scior, Potts, & Furnham, 2013).…”

Section: Introductionmentioning

confidence: 99%

As far as possible: The relationship between public awareness, social distance, and stigma towards people with intellectual disability

Tenorio

Arango

Aparicio

et al. 2022

Policy Practice Intel Disabi

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Research shows that people with intellectual disability (ID) face public stigma. However, a recently published narrative review suggests that this phenomenon has not been explored in a Latin American country. This study fills the gap in our understanding of public stigma towards people with intellectual disability in Chile. 395 adults from the general population (18 to 78 years) participated in the survey. Using the Intellectual Disability Literacy Scale, adapted for Chile, we explored the participants' literacy about ID, their causal beliefs, and desire of social distance. Only 1.3% of the sample identified intellectual disability in the instrument's vignette. The most common causal attribution for the condition was environmental, followed by biomedical factors. Participants showed a high desire of social distance, with higher scores associated with more educated participants. Our findings show that low literacy about intellectual disability and a high desire for social distance are significant factors contributing to public stigma in Chile. These are tangible targets for change that can lead to increased social inclusion and participation of people with intellectual disability in Chile.Any such approaches are likely to be transferable to other Latin American countries and could help reduce public stigma for this population.

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African families’ and caregivers’ experiences of raising a child with intellectual disability: A narrative synthesis of qualitative studies

Abstract: African families' and caregivers' experiences of raising a child with intellectual disability: A narrative synthesis of qualitative studies', African Journal of Disability 10(0), a827.

Cited by 27 publications

References 48 publications

Early detection and intervention for young children with early developmental disabilities in Western Uganda: a mixed-methods evaluation

Early detection and intervention for young children with early developmental disabilities in Western Uganda: a mixed-methods evaluation

The support needs of families raising children with intellectual disability

As far as possible: The relationship between public awareness, social distance, and stigma towards people with intellectual disability

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