Full Text Available
Note: Clicking the button above will open the full text document at the original institutional repository in a new window.
A grounded theory study of family caregivers' responses to the sexuality of young adults with intellectual disabilities
Globally, people with intellectual disabilities are not afforded equal opportunities to express and enjoy their sexuality on par with their peers. Although most of them remain under the lifetime custody of family caregivers for care and support, a knowledge gap exists in understanding the role of th...
Saved in:
| Main Author: | |
|---|---|
| Other Authors: | |
| Format: | Thesis |
| Language: | English |
| Published: |
Department of Health and Rehabilitation Sciences
2017
|
| Subjects: | |
| Tags: |
No Tags, Be the first to tag this record!
|
| _version_ | 1867613263668183040 |
|---|---|
| access_status_str | Open Access |
| author | Kahonde, Callista Kanganwiro |
| author2 | McKenzie, Judith |
| author_browse | Kahonde, Callista Kanganwiro McKenzie, Judith |
| author_facet | McKenzie, Judith Kahonde, Callista Kanganwiro |
| author_sort | Kahonde, Callista Kanganwiro |
| collection | Thesis |
| description | Globally, people with intellectual disabilities are not afforded equal opportunities to express and enjoy their sexuality on par with their peers. Although most of them remain under the lifetime custody of family caregivers for care and support, a knowledge gap exists in understanding the role of the family caregivers in the sexuality issues of people with intellectual disabilities, especially in developing countries like South Africa. The present study is the first of its kind that employed an exploratory, theory generating methodology, the constructivist grounded theory methodology, to seek understanding of how family caregivers in the Western Cape Province of South Africa respond to sexuality of young adults with intellectual disabilities. Data were gathered through in-depth and focus group interviews with 25 family caregivers and further confirmatory interviews with nine service providers of young adults with intellectual disabilities. The study generated a substantive grounded theory, the Theory of Contained Sexuality, to explain the responses of family caregivers to the sexuality of young adults with intellectual disabilities. The study found that the family caregivers' thoughts, emotions, actions and behaviour towards the sexuality of the young adults with intellectual disabilities are influenced by what the family caregivers see as implications of the young adults' sexual expression and behaviour on both of them. The family caregivers do not completely suppress or restrain the sexuality of the young adults with intellectual disabilities but they support with 'containment', that is they try to confine the sexuality within boundaries that they can control and manage within their lifelong caring role. Ultimately, what the findings of this study point towards is the impact of lifelong family care on realisation of sexual rights by people with intellectual disabilities. Hence, the study concluded that, without the appropriate forms of support and probably alternative forms of care, the human rights framework as embodied within the United Nations Convention on the Rights of Persons with Disabilities and local policies informed by it is insufficient as a tool for sexual emancipation of people with intellectual disabilities. Therefore, a relational moral theory - the ethics of care - is proposed as appropriate to complement the human rights framework in both research and practice around sexuality of people with intellectual disabilities living under family care. The study also highlights the imperative for further studies that investigate the impact of lifelong family care on other aspects of the lives of people with intellectual disabilities and promote theorisation of lifelong care within such studies. |
| format | Thesis |
| id | oai:open.uct.ac.za:11427/24508 |
| institution | University of Cape Town (South Africa) |
| language | eng |
| last_indexed | 2026-06-10T12:33:21.255Z |
| license_str | Not specified — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from UCTD — University of Cape Town Open Access Repository |
| publishDate | 2017 |
| publishDateRange | 2017 |
| publishDateSort | 2017 |
| publisher | Department of Health and Rehabilitation Sciences |
| publisherStr | Department of Health and Rehabilitation Sciences |
| record_format | dspace |
| source_str | UCTD — University of Cape Town Open Access Repository |
| spelling | oai:open.uct.ac.za:11427/24508 A grounded theory study of family caregivers' responses to the sexuality of young adults with intellectual disabilities Kahonde, Callista Kanganwiro McKenzie, Judith Wilson, Nathan Disability Studies Globally, people with intellectual disabilities are not afforded equal opportunities to express and enjoy their sexuality on par with their peers. Although most of them remain under the lifetime custody of family caregivers for care and support, a knowledge gap exists in understanding the role of the family caregivers in the sexuality issues of people with intellectual disabilities, especially in developing countries like South Africa. The present study is the first of its kind that employed an exploratory, theory generating methodology, the constructivist grounded theory methodology, to seek understanding of how family caregivers in the Western Cape Province of South Africa respond to sexuality of young adults with intellectual disabilities. Data were gathered through in-depth and focus group interviews with 25 family caregivers and further confirmatory interviews with nine service providers of young adults with intellectual disabilities. The study generated a substantive grounded theory, the Theory of Contained Sexuality, to explain the responses of family caregivers to the sexuality of young adults with intellectual disabilities. The study found that the family caregivers' thoughts, emotions, actions and behaviour towards the sexuality of the young adults with intellectual disabilities are influenced by what the family caregivers see as implications of the young adults' sexual expression and behaviour on both of them. The family caregivers do not completely suppress or restrain the sexuality of the young adults with intellectual disabilities but they support with 'containment', that is they try to confine the sexuality within boundaries that they can control and manage within their lifelong caring role. Ultimately, what the findings of this study point towards is the impact of lifelong family care on realisation of sexual rights by people with intellectual disabilities. Hence, the study concluded that, without the appropriate forms of support and probably alternative forms of care, the human rights framework as embodied within the United Nations Convention on the Rights of Persons with Disabilities and local policies informed by it is insufficient as a tool for sexual emancipation of people with intellectual disabilities. Therefore, a relational moral theory - the ethics of care - is proposed as appropriate to complement the human rights framework in both research and practice around sexuality of people with intellectual disabilities living under family care. The study also highlights the imperative for further studies that investigate the impact of lifelong family care on other aspects of the lives of people with intellectual disabilities and promote theorisation of lifelong care within such studies. 2017-06-06T09:46:53Z 2017-06-06T09:46:53Z 2016 Doctoral Thesis Doctoral PhD http://hdl.handle.net/11427/24508 eng application/pdf Department of Health and Rehabilitation Sciences Faculty of Health Sciences University of Cape Town |
| spellingShingle | Disability Studies Kahonde, Callista Kanganwiro A grounded theory study of family caregivers' responses to the sexuality of young adults with intellectual disabilities |
| thesis_degree_str | Doctoral |
| title | A grounded theory study of family caregivers' responses to the sexuality of young adults with intellectual disabilities |
| title_full | A grounded theory study of family caregivers' responses to the sexuality of young adults with intellectual disabilities |
| title_fullStr | A grounded theory study of family caregivers' responses to the sexuality of young adults with intellectual disabilities |
| title_full_unstemmed | A grounded theory study of family caregivers' responses to the sexuality of young adults with intellectual disabilities |
| title_short | A grounded theory study of family caregivers' responses to the sexuality of young adults with intellectual disabilities |
| title_sort | grounded theory study of family caregivers responses to the sexuality of young adults with intellectual disabilities |
| topic | Disability Studies |
| url | http://hdl.handle.net/11427/24508 |
| work_keys_str_mv | AT kahondecallistakanganwiro agroundedtheorystudyoffamilycaregiversresponsestothesexualityofyoungadultswithintellectualdisabilities AT kahondecallistakanganwiro groundedtheorystudyoffamilycaregiversresponsestothesexualityofyoungadultswithintellectualdisabilities |