The support needs of families raising children with intellectual disability

Abstract

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.

‘People don’t understand what we go through!’: Caregiver views on South Africa’s care dependency grant

“…Thus, CDG funds were commonly used to support the needs of the whole household, as is common for all of the grants available under SA's social assistance provisions Kelly 2016a;Kidd et al 2018;Lloyd-Sherlock & Agrawal 2014). As the caregivers whose narratives are shared in this article were based in peri-urban areas in Gauteng and the Western Cape, the most well-resourced provinces in the country, the situation for caregivers in other provinces and rural contexts is likely to be even more difficult and isolating (Duma et al 2021;Modula 2022). The revitalisation of and better linkage to existing services, or the initiation of new services to which these families are legally entitled, would greatly enhance the impact of the grant, allowing it to be more than just a basic survival mechanism.…”

“…According to international and regional conventions and local commitments to their civil rights, caregivers of children with disabilities in SA should have access to a wide range of interventions for social protection, including adequate and appropriate education and healthcare, assistive devices and spaces for play and recreation ). However, appropriate public services are generally insufficient, inaccessible or unavailable for many families, especially those who care for children with disabilities (Modula 2022;Philpott & Muthukrishna 2019;Tigere & Makhubele 2019). In practice, then, the CDG is SA's key (and often the only) intervention for the social protection of children with disabilities and their families.…”

Adapting Attachment and Biobehavioral Catch‐up for infants and young children with intellectual disabilities and developmental delays in South Africa: Reflections and recommendations from local stakeholders

“…The ABC—albeit indirectly—may have a role to play in counteracting the effects of stigma for parents and caregivers of children with ID/DD. Stigmatizing experiences in relation to their child's disability are commonly reported among caregivers in South Africa (Malatji & Ndebele, 2018 ; Mkabile & Swartz, 2021 ; Mmangaliso & Lupuwana, 2021 ; Modula, 2022 ) and other African contexts (Aldersey et al., 2018 ; Masulani‐Mwale et al., 2016 ; Oti‐Boadi, 2017 ; Tekola et al., 2020 ; Tilahun et al., 2016 ; Zuurmond et al., 2020 ). This may be particularly acute in township and rural communities where a combination of factors such as poor education, poverty, and unemployment may magnify stigmatizing experiences related to having a child with ID/DD (Rohwerder, 2018 ; Zuurmond et al., 2020 ).…”

Do children with disabilities have the same opportunities to play as children without disabilities? Evidence from the Multiple Indicator Cluster Surveys in 38 low and middle-income countries

“…This understanding becomes even more imperative when considering the intersection of gender and disability, especially for young children 24 . The unique experiences and challenges faced by girls and boys with disabilities can have an impact on their ability to fully participate in play activities and receive necessary support [25][26][27] . Moreover, there also needs to be a particular focus on LMICs as data is lacking [28][29][30][31] .…”