Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study
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Date
2024
Authors
Modula, Mantji Juliah
Chipu, Mpho Grace
Journal Title
Journal ISSN
Volume Title
Publisher
BMC
Abstract
𝗕𝗮𝗰𝗸𝗴𝗿𝗼𝘂𝗻𝗱 Globally, families experience challenges caring for and raising children with intellectual disability (ID). Family caregivers in rural states are mostly known for lacking support resources, including information on understanding the care of ID. Lack of adequate information on understanding of ID compromises the provision of life-long care and support of the children with ID’s physical, emotional, psychological and social developmental well-being. The study aimed to explore the information needs of family caregivers regarding the care of children with ID in rural areas of Limpopo Province, South Africa.
𝗠𝗲𝘁𝗵𝗼𝗱𝘀 This qualitative explorative research conducted 16 in-depth individual interviews and one focus group discussion with ten family members. The participants shared their experiences of raising children with ID in rural communities. Inductive thematic analysis using Atlas Ti software categorised emerging themes and subthemes of this study from merged data sets on information needs regarding the care of children with ID among family caregivers.
𝗥𝗲𝘀𝘂𝗹𝘁𝘀 The findings highlighted the need for information regarding ID care among family caregivers raising children with ID in the home environment. The information challenges experienced by family caregivers include caring for the challenging behaviour of children with ID and available support resources and services for the children and their families. These challenges impact the care and support required to meet the developmental needs of children with ID. Furthermore, inadequate information on ID among family caregivers in rural communities with a lack of resources restricts the children from accessing required support services.
𝗖𝗼𝗻𝗰𝗹𝘂𝘀𝗶𝗼𝗻𝘀 Given the information challenges these families face on ID, the stakeholders must develop continuous training programmes that will equip, empower, and further monitor ID care and management among family caregivers to enhance care and the raising of children with dignity.
Description
Keywords
Caregivers, Children, Family, Information needs, Intellectual disability, Rural, South Africa
Citation
Modula, M. J., & Chipu, M. G. (2024). Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study. BMC Public Health, 24(1), 1139. https://doi.org/10.1186/s12889-024-18606-7