Judith McKenzie1,2, Roy McConkey3,4. 1. School of Health and Rehabilitation Sciences, Groot Schuur Hospital, Cape Town, South Africa. judith.mckenzie@uct.ac.za. 2. Disability Studies Programme, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa. judith.mckenzie@uct.ac.za. 3. Disability Studies Programme, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa. 4. Developmental Disabilities, University of Ulster, Newtown Abbey, UK.
Abstract
BACKGROUND: Internationally adults with intellectual disability are largely cared for by their families, especially in low- to middle-income countries (LAMIC). Compared to high-income countries, little is known about their experiences in LAMIC such as South Africa. METHODS: Focus group discussions were carried out with 37 family caregivers (FCGs) in the Cape Town metropole. These were transcribed and analysed thematically. Core categories were identified and validated through member checking. RESULTS: Family caregivers showed strong commitment to care despite the heavy responsibility and burden of care that women especially experience. They recognize the limited personal growth opportunities for people with intellectual disability that increases the caregiving burden. FCGs identify supports and resources in the community that assist them with their care responsibilities but often feel let down by services. CONCLUSIONS: Improved family supports appropriate to the resources in LAMIC are needed especially when existing carers are no longer able to provide care.
BACKGROUND: Internationally adults with intellectual disability are largely cared for by their families, especially in low- to middle-income countries (LAMIC). Compared to high-income countries, little is known about their experiences in LAMIC such as South Africa. METHODS: Focus group discussions were carried out with 37 family caregivers (FCGs) in the Cape Town metropole. These were transcribed and analysed thematically. Core categories were identified and validated through member checking. RESULTS: Family caregivers showed strong commitment to care despite the heavy responsibility and burden of care that women especially experience. They recognize the limited personal growth opportunities for people with intellectual disability that increases the caregiving burden. FCGs identify supports and resources in the community that assist them with their care responsibilities but often feel let down by services. CONCLUSIONS: Improved family supports appropriate to the resources in LAMIC are needed especially when existing carers are no longer able to provide care.
Authors: Stephanie Vanclooster; Stacey Bissell; Agnies M van Eeghen; Nola Chambers; Liesbeth De Waele; Anna W Byars; Jamie K Capal; Sebastián Cukier; Peter Davis; Jennifer Flinn; Sugnet Gardner-Lubbe; Tanjala Gipson; Tosca-Marie Heunis; Dena Hook; J Christopher Kingswood; Darcy A Krueger; Aubrey J Kumm; Mustafa Sahin; Eva Schoeters; Catherine Smith; Shoba Srivastava; Megumi Takei; Robert Waltereit; Anna C Jansen; Petrus J de Vries Journal: J Neurodev Disord Date: 2022-02-13 Impact factor: 4.025