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Growing Up in a Rare Disease Family: The Perspective of Adolescent and Young Adult Siblings in Cape Town, South Africa
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_ | 1867613960519286784 |
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| access_status_str | Open Access |
| author | Goosen, Melissa |
| author2 | Pretorius, Chrisma |
| author_browse | Goosen, Melissa Pretorius, Chrisma |
| author_facet | Pretorius, Chrisma Goosen, Melissa |
| author_sort | Goosen, Melissa |
| collection | Thesis |
| dc_rights_str_mv | Stellenbosch University |
| description | Thesis (MA)--Stellenbosch University, 2025. |
| format | Thesis |
| id | oai:scholar.sun.ac.za:10019.1/134230 |
| institution | Stellenbosch University (South Africa) |
| language | English |
| last_indexed | 2026-06-10T12:44:25.612Z |
| 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:10019.1/134230 Growing Up in a Rare Disease Family: The Perspective of Adolescent and Young Adult Siblings in Cape Town, South Africa Goosen, Melissa Pretorius, Chrisma Moosa, Shahida Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Psychology. Thesis (MA)--Stellenbosch University, 2025. Goosen, M. 2025. Growing Up in a Rare Disease Family: The Perspective of Adolescent and Young Adult Siblings in Cape Town, South Africa. Unpublished masters thesis. Stellenbosch: Stellenbosch University [online]. Available: https://scholar.sun.ac.za/items/92a767c5-23da-4dc6-a64f-4dab735ea5cb Rare diseases, which individually affect less than 1 in 2000 citizens in a country, encompass a heterogeneous set of diseases that can affect any system of the body. While they each affect a small number of individuals, their collective impact is much greater. A vast amount of research has investigated the effect that rare diseases have on those diagnosed and their caregivers. However, the ramifications of a rare disease extend beyond the individual who has been diagnosed, as the lives of all family members are affected. Siblings, who are often overlooked in research, face many challenges associated with having a brother or sister with a rare disease. However, our understanding of the experiences of siblings of an individual with a rare disease is limited, especially within the South African context. In this study I aimed to explore the experiences of adolescent and young adult siblings of an individual with a rare disease in Cape Town, South Africa. Specifically, I explored the challenges posed by having a sibling diagnosed with a rare disease, explored how siblings navigate these challenges and examined how family organisation, such as communication processes, influence the experiences of siblings. I used an exploratory, qualitative research design with a phenomenological strategy of inquiry. Using purposive sampling, I recruited eight adolescent and young adult siblings from Tygerberg Hospital in Cape Town, Western Cape to participate in semi-structured, individual interviews. During these interviews, siblings shared insightful and in-depth narratives of their experiences. By using the Revised Theory of Creating a Tenuous Balance as a theoretical point of departure, I conceptualised and explored the experiences of siblings, using reflexive thematic analysis. The following key themes emerged, encompassing the experience of having a sibling with a rare disease: a) siblings as adjunct caregivers, b) lack of information on rare diseases, c) family communication, d) important relationships, e) sibling relationship, f) emotional responses, g) coping strategies, and h) need for social support. These findings suggest that having a brother or sister with a rare disease has extensive implications for the emotional and social wellbeing of siblings. Siblings play an integral role in providing care for an individual diagnosed with a rare disease and should, thus, be considered as being integral to the caregiving unit. Paired with a lack of information available and limited communication in rare disease families, siblings are left to navigate feelings of sadness, anger and worry in their daily life. However, siblings lack sufficient support from parents and peers and rely on passive coping strategies to navigate the complexities of their experiences. This study is the first to explore the experiences of having a sibling with a rare disease in South Africa. The findings in this study are valuable in addressing this gap in literature and could aid future research on the impact of rare diseases on families and, more specifically, siblings. Masters 2025-10-24T12:55:07Z 2025-10-24T12:55:07Z 2025-03 Thesis https://scholar.sun.ac.za/handle/10019.1/134230 en Stellenbosch University 228 pages application/pdf Stellenbosch : Stellenbosch University |
| spellingShingle | Goosen, Melissa Growing Up in a Rare Disease Family: The Perspective of Adolescent and Young Adult Siblings in Cape Town, South Africa |
| title | Growing Up in a Rare Disease Family: The Perspective of Adolescent and Young Adult Siblings in Cape Town, South Africa |
| title_full | Growing Up in a Rare Disease Family: The Perspective of Adolescent and Young Adult Siblings in Cape Town, South Africa |
| title_fullStr | Growing Up in a Rare Disease Family: The Perspective of Adolescent and Young Adult Siblings in Cape Town, South Africa |
| title_full_unstemmed | Growing Up in a Rare Disease Family: The Perspective of Adolescent and Young Adult Siblings in Cape Town, South Africa |
| title_short | Growing Up in a Rare Disease Family: The Perspective of Adolescent and Young Adult Siblings in Cape Town, South Africa |
| title_sort | growing up in a rare disease family the perspective of adolescent and young adult siblings in cape town south africa |
| url | https://scholar.sun.ac.za/handle/10019.1/134230 |
| work_keys_str_mv | AT goosenmelissa growingupinararediseasefamilytheperspectiveofadolescentandyoungadultsiblingsincapetownsouthafrica |