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Coping with the Challenges of Caregiving: Exploring the Experiences of Family Caregivers of Children with Rare Diseases 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_ | 1867613783342448640 |
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| access_status_str | Open Access |
| author | Van Niekerk, Jodie |
| author2 | Pretorius, Chrisma |
| author_browse | Pretorius, Chrisma Van Niekerk, Jodie |
| author_facet | Pretorius, Chrisma Van Niekerk, Jodie |
| author_sort | Van Niekerk, Jodie |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
| description | Thesis (MA)--Stellenbosch University, 2025. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/134404 |
| institution | Stellenbosch University (South Africa) |
| language | English |
| last_indexed | 2026-06-10T12:41:37.777Z |
| 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:10019.1/134404 Coping with the Challenges of Caregiving: Exploring the Experiences of Family Caregivers of Children with Rare Diseases at Tygerberg Hospital Van Niekerk, Jodie Pretorius, Chrisma Moosa, Shahida Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Psychology. Thesis (MA)--Stellenbosch University, 2025. Van Niekerk, J. 2025. Coping with the Challenges of Caregiving: Exploring the Experiences of Family Caregivers of Children with Rare Diseases at Tygerberg Hospital. Unpublished masters thesis. Stellenbosch: Stellenbosch University [online]. Available: https://scholar.sun.ac.za/items/21a7f6bd-1c32-4ddb-89c8-2fa7700c6048 Rare diseases is an umbrella term for numerous chronic conditions which have low prevalence individually. These conditions usually affect children and severely impact their lives. Children with rare diseases are often cared for by family members, who are referred to as family caregivers. Family caregivers play an important role in the broader management of rare diseases and in their children’s lives. However, these caregivers face many challenges in their roles and frequently struggle to cope with the demands they face. This regularly has consequences for their physical and mental wellbeing, and quality of life, which can further hinder their ability to meet their children’s care needs. If meaningful changes are to be made to the benefit of this group, it is important to understand their needs. Unfortunately, caregivers’ experiences are understudied, especially within the South African context. Therefore, this study aimed to identify the challenges of family caregivers of children with rare diseases at Tygerberg Hospital, and to explore how they cope with these challenges. An exploratory qualitative approach was employed to investigate the experiences of 10 parents (aged 22-54) who were recruited using a convenience sampling strategy and interviewed thereafter. These interviews were analysed using reflexive thematic analysis. Deductive analysis was informed by the Multidimensional Model of Caregiver Process and Burden, however, inductive analysis was also used to develop themes. These themes highlight several significant dimensions of caregivers’ experiences. Firstly, uncertainty was a significant challenge, and some participants coped with elements of uncertainty by gaining knowledge. Secondly, whether experiences in healthcare settings were positively or negatively impactful depended on healthcare providers’ knowledge about rare diseases and how they communicated with caregivers. Thirdly, many challenges pertained to providing holistic care, which involved meeting children’s healthcare, social and emotional needs. Fourthly, acceptance was often facilitated by normalisation, and although acceptance was challenging it was important for participants’ coping. Fifthly, the socioeconomic context of care was significant because this influenced the availability of social support and the impact of financial challenges. Sixthly, various intrapersonal factors, such as religious beliefs, positivity and love for children, gave meaning to participants’ lives and thereby motivated them to persevere through challenges. Finally, participants experienced physical and psychological impacts due to the extensive burdens they bear. However, participants saw no choice but to carry on in their roles regardless of the challenges. Comparison of these themes to existing literature revealed that participants faced similar challenges to caregivers in other countries, and utilised coping strategies comparable to those found in previous research. However, these parents lacked some types of support commonly documented in the literature. It is imperative that family caregivers receive increased support and consideration in South Africa. Therefore, improved understanding about caregivers’ unique challenges and coping is required. Masters 2025-11-19T13:04:25Z 2025-11-19T13:04:25Z 2025-03 Thesis https://scholar.sun.ac.za/handle/10019.1/134404 en Stellenbosch University 203 pages application/pdf Stellenbosch : Stellenbosch University |
| spellingShingle | Van Niekerk, Jodie Coping with the Challenges of Caregiving: Exploring the Experiences of Family Caregivers of Children with Rare Diseases at Tygerberg Hospital |
| title | Coping with the Challenges of Caregiving: Exploring the Experiences of Family Caregivers of Children with Rare Diseases at Tygerberg Hospital |
| title_full | Coping with the Challenges of Caregiving: Exploring the Experiences of Family Caregivers of Children with Rare Diseases at Tygerberg Hospital |
| title_fullStr | Coping with the Challenges of Caregiving: Exploring the Experiences of Family Caregivers of Children with Rare Diseases at Tygerberg Hospital |
| title_full_unstemmed | Coping with the Challenges of Caregiving: Exploring the Experiences of Family Caregivers of Children with Rare Diseases at Tygerberg Hospital |
| title_short | Coping with the Challenges of Caregiving: Exploring the Experiences of Family Caregivers of Children with Rare Diseases at Tygerberg Hospital |
| title_sort | coping with the challenges of caregiving exploring the experiences of family caregivers of children with rare diseases at tygerberg hospital |
| url | https://scholar.sun.ac.za/handle/10019.1/134404 |
| work_keys_str_mv | AT vanniekerkjodie copingwiththechallengesofcaregivingexploringtheexperiencesoffamilycaregiversofchildrenwithrarediseasesattygerberghospital |