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Exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital
Thesis (MA)--Stellenbosch University, 2025.
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| Format: | Thesis |
| Language: | English |
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Stellenbosch : Stellenbosch University
2025
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| _version_ | 1867613858699411456 |
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| access_status_str | Open Access |
| author | Hendricks, Aspen |
| author2 | Pretorius, Chrisma |
| author_browse | Hendricks, Aspen Pretorius, Chrisma |
| author_facet | Pretorius, Chrisma Hendricks, Aspen |
| author_sort | Hendricks, Aspen |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
| description | Thesis (MA)--Stellenbosch University, 2025. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/134235 |
| institution | Stellenbosch University (South Africa) |
| language | English |
| last_indexed | 2026-06-10T12:42:49.487Z |
| license_str | Other — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from SUNScholar — Stellenbosch University Repository |
| publishDate | 2025 |
| publishDateRange | 2025 |
| publishDateSort | 2025 |
| publisher | Stellenbosch : Stellenbosch University |
| publisherStr | Stellenbosch : Stellenbosch University |
| record_format | dspace |
| source_str | SUNScholar — Stellenbosch University Repository |
| spelling | oai:scholar.sun.ac.za:10019.1/134235 Exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital Hendricks, Aspen Pretorius, Chrisma Moosa, Shahida Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Psychology. Thesis (MA)--Stellenbosch University, 2025. Hendricks, A. 2025. Exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital. Unpublished masters thesis. Stellenbosch: Stellenbosch University [online]. Available: https://scholar.sun.ac.za/items/47de1426-031d-4471-9bed-c3eb6d20b925 Rare diseases are conditions that affect less than one in 2000 people in a population and millions of people are affected by them worldwide. Rare diseases are predominantly diagnosed in children and a parent is therefore most likely to become their caregiver. Caregivers of children with rare diseases may experience many challenges, especially in the South African context. These challenges in combination with the added responsibilities that accompany the caregiver role may have an impact on caregivers’ mental health. This study aimed to explore the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital in Cape Town, South Africa. This study utilised an explorative qualitative research design. Moreover, convenience sampling was utilised to obtain 10 participants (aged 31 to 55 years) for this study. These participants were identified as caregivers of children with rare diseases. A semi-structured interview was conducted with each of the 10 participants. Thematic analysis was then utilised to analyse collected data and to generate themes and sub-themes from the semi-structured interviews conducted with participants. The Multidimensional Model of Caregiving proposed by Raina et al. (2004) was adapted and utilised to guide the exploration of participants’ experiences regarding their mental health. This conceptual model was used within the process of analysing, organising, reporting, and discussing the data collected for this study. A total of 11 themes relating to various factors that impact the mental health of caregivers of children with rare diseases were generated. These themes included medical-related background, the household, economic situation, child’s functioning and behaviour, stress and strain, caregiver impact, uncertainty, unexpected aspects of the caregiver journey, support, coping mechanisms, and mental health and associated emotions. The findings of this study suggest that although each participant had unique circumstances, it is evident that caregivers of children with rare diseases experienced an impact on their mental health due to caregiving. Moreover, this impact was also reported to occur due to the caregiving role in combination with other additional stressors and responsibilities. Factors such as financial difficulty, employment, the child’s functioning, the child’s behaviour, siblings of the child with a rare disease, and the partner of the caregiver were reported to have an impact on caregivers’ mental health. Participants also reported on how the hospital and medical staff, diagnostic journey, some rare diseases being hereditary, feelings of uncertainty, unexpected aspects of the caregiver journey, lack of rest, and ill-physical health have also impacted their mental health. These factors reported on were mostly stated to be factors that may hinder positive mental health outcomes at times. Some participants also reported their thoughts about different types of support and coping mechanisms that they would like to or have utilised. Most responses regarding support and coping mechanisms indicate that they are seen to be advantageous for better mental health outcomes. This study also identified and highlighted some interesting findings that have been reported on less frequently, or not at all, in the available literature on the mental health of caregivers of children with rare diseases. This includes a paucity of research on faith being used as a coping mechanism to gain positive mental health outcomes for caregivers of children with rare diseases. Furthermore, no literature is available on the mental health of caregivers of children with rare diseases who considered terminating their pregnancy but did not pursue it. Thus, future researchers are encouraged to build on this study’s findings and to investigate these less-developed research areas relating to the mental health of caregivers of children with rare diseases. Masters 2025-10-27T06:04:04Z 2025-10-27T06:04:04Z 2025-03 Thesis https://scholar.sun.ac.za/handle/10019.1/134235 en Stellenbosch University 166 pages application/pdf Stellenbosch : Stellenbosch University |
| spellingShingle | Hendricks, Aspen Exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital |
| title | Exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital |
| title_full | Exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital |
| title_fullStr | Exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital |
| title_full_unstemmed | Exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital |
| title_short | Exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at Tygerberg Hospital |
| title_sort | exploring the impact of caregiving on the mental health of caregivers of children with rare diseases who are being treated at tygerberg hospital |
| url | https://scholar.sun.ac.za/handle/10019.1/134235 |
| work_keys_str_mv | AT hendricksaspen exploringtheimpactofcaregivingonthementalhealthofcaregiversofchildrenwithrarediseaseswhoarebeingtreatedattygerberghospital |