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Exploring the Experiences of Caregivers of Children with Rare Diseases in South Africa: A WhatsApp-Based Study Informed by Participatory Principles
Thesis (MA)--Stellenbosch University, 2026.
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| Format: | Thesis |
| Language: | English |
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Stellenbosch : Stellenbosch University
2026
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| _version_ | 1867614015358763008 |
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| access_status_str | Open Access |
| author | Neuhoff, Hannah Marielese |
| author2 | Snow, Megan |
| author_browse | Neuhoff, Hannah Marielese Snow, Megan |
| author_facet | Snow, Megan Neuhoff, Hannah Marielese |
| author_sort | Neuhoff, Hannah Marielese |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
| description | Thesis (MA)--Stellenbosch University, 2026. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/136102 |
| institution | Stellenbosch University (South Africa) |
| language | English |
| last_indexed | 2026-06-10T12:45:19.124Z |
| license_str | Other — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from SUNScholar — Stellenbosch University Repository |
| publishDate | 2026 |
| publishDateRange | 2026 |
| publishDateSort | 2026 |
| publisher | Stellenbosch : Stellenbosch University |
| publisherStr | Stellenbosch : Stellenbosch University |
| record_format | dspace |
| source_str | SUNScholar — Stellenbosch University Repository |
| spelling | oai:scholar.sun.ac.za:10019.1/136102 Exploring the Experiences of Caregivers of Children with Rare Diseases in South Africa: A WhatsApp-Based Study Informed by Participatory Principles Neuhoff, Hannah Marielese Snow, Megan Gush, Marianne Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Psychology. Thesis (MA)--Stellenbosch University, 2026. Neuhoff, H. M. 2026. Exploring the Experiences of Caregivers of Children with Rare Diseases in South Africa: A WhatsApp-Based Study Informed by Participatory Principles. Unpublished masters thesis. Stellenbosch: Stellenbosch University [online]. Available: https://scholar.sun.ac.za/items/b31da474-fe58-40fd-9aa0-23b6b28356de Rare diseases (RDs) collectively affect millions worldwide yet remain profoundly under-recognised within public health systems, particularly in low- and middle-income contexts such as South Africa (SA). Families of children with rare or undiagnosed conditions often navigate fragmented healthcare services, pervasive uncertainty, and limited psychosocial support. This study explored the experiences of caregivers of children with rare or undiagnosed conditions in SA, with the aim of understanding the psychosocial, emotional, and practical dimensions of caregiving and how caregivers adapt and find meaning within these challenges. This qualitative study was guided by participatory research (PR) elements, positioning caregivers as active contributors to knowledge production. Data was collected through semi-structured intake interviews with caregivers (primarily mothers) recruited from the Paediatric Genetics Clinic at Tygerberg Hospital, followed by four weeks of WhatsApp-based engagement involving voice notes, text reflections, videos, and shared images. This multimodal design enabled caregivers to narrate their experiences in accessible, flexible, and contextually meaningful ways. Data was analysed using reflexive thematic analysis (RTA), complemented by polytextual thematic analysis of visual material, allowing for a nuanced understanding of caregivers’ emotional and embodied experiences. Five themes emerged: (1) Uncertainty of Caregiving – the pervasive ambiguity surrounding diagnosis, prognosis, and treatment; (2) Cost of Caring (An All-Consuming experience) – the physical, emotional, and financial demands that structure caregivers’ daily lives; (3) Social Perceptions and Stigma – the tension between visibility and isolation in community and familial contexts; (4) Navigating the Healthcare System – caregivers’ dual roles as advocates and experts in under-resourced medical settings; and (5) Coping, Meaning-Making, and Adaptation – the centrality of faith, advocacy, knowledge-seeking, and technology in sustaining resilience. Rolland’s Family Systems-Illness Model (FSIM) provided the theoretical lens through which these findings were interpreted, situating caregivers’ experiences within three interrelated dimensions: illness type (the chronic and uncertain nature of RDs), time phases (ongoing adaptation across diagnostic and care trajectories), and family system variables (relational, cultural, and belief structures). This framework illuminated how caregiving for a child with a RD is not a static role but a dynamic, evolving process shaped by both individual agency and systemic constraints. The findings highlight critical implications for policy and practice. There is a need for integrated psychosocial support services within genetic healthcare, improved communication between families and professionals, and greater investment in community-based and digital support mechanisms. Future research should expand participatory, technology-enabled methodologies to amplify caregiver voices and inform policy reform aimed at improving diagnostic access, funding for genetic testing, and sustained psychological support for families affected by RDs in SA. Masters 2026-04-22T10:05:17Z 2026-04-22T10:05:17Z 2026-03 Thesis https://scholar.sun.ac.za/handle/10019.1/136102 en Stellenbosch University 176 pages application/pdf Stellenbosch : Stellenbosch University |
| spellingShingle | Neuhoff, Hannah Marielese Exploring the Experiences of Caregivers of Children with Rare Diseases in South Africa: A WhatsApp-Based Study Informed by Participatory Principles |
| title | Exploring the Experiences of Caregivers of Children with Rare Diseases in South Africa: A WhatsApp-Based Study Informed by Participatory Principles |
| title_full | Exploring the Experiences of Caregivers of Children with Rare Diseases in South Africa: A WhatsApp-Based Study Informed by Participatory Principles |
| title_fullStr | Exploring the Experiences of Caregivers of Children with Rare Diseases in South Africa: A WhatsApp-Based Study Informed by Participatory Principles |
| title_full_unstemmed | Exploring the Experiences of Caregivers of Children with Rare Diseases in South Africa: A WhatsApp-Based Study Informed by Participatory Principles |
| title_short | Exploring the Experiences of Caregivers of Children with Rare Diseases in South Africa: A WhatsApp-Based Study Informed by Participatory Principles |
| title_sort | exploring the experiences of caregivers of children with rare diseases in south africa a whatsapp based study informed by participatory principles |
| url | https://scholar.sun.ac.za/handle/10019.1/136102 |
| work_keys_str_mv | AT neuhoffhannahmarielese exploringtheexperiencesofcaregiversofchildrenwithrarediseasesinsouthafricaawhatsappbasedstudyinformedbyparticipatoryprinciples |