Skip to main content

Advertisement

SpringerLink
Log in

The Impact of Lifelong Family Care on Family Caregivers’ Perceptions of the Sexuality of Young Adults with Intellectual Disabilities in the Western Cape of South Africa

  • Original Paper
  • Published:
Sexuality and Disability Aims and scope Submit manuscript

Abstract

This paper presents findings of a constructivist grounded theory study conducted within the Western Cape Province of South Africa. The study explored how family caregivers respond to sexuality issues of their young adults with intellectual disabilities (ID). Indepth interviews and focus group discussions were used as methods of data collection. Twenty-five family caregivers participated in the study. The family caregivers’ perceptions highlight how the lifelong care relationship and the living arrangements attached to it may become a hindrance to people with ID exercising sexual autonomy. The family caregivers felt responsible for the young adults’ behavior and determined what was appropriate or not with regards to the young adults’ sexuality. Concerns about the young adults’ future care were central in the family caregivers’ responses. We conclude that without the appropriate forms of support for both the young adults and their caregivers, the young adults will continue to be policed by the family caregivers and not have choices and opportunities to enjoy and express their sexuality. The support interventions needed should alleviate the burden of care from the family caregivers and also ensure independent living and more choices for the young adults with ID.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Aldersey, H.M.: Family perceptions of intellectual disability: understanding and support in Dar es Salaam. Afr. J. Disabil. 1(1), 32 (2012). https://doi.org/10.4102/ajod.v1i1.32

    Article  PubMed  PubMed Central  Google Scholar 

  2. Aunos, M., Feldman, M.A.: Attitudes towards sexuality, sterilization and parenting rights of persons with intellectual disabilities. J. Appl. Res. Intellect. Disabil. 15(4), 285–296 (2002). https://doi.org/10.1046/j.1468-3148.2002.00135.x

    Article  Google Scholar 

  3. Barnett, D.: Constructing new theory for identifying students with emotional disturbance: a constructivist approach to grounded theory. Grounded Theory Rev. 11(1):47–58 (2012). http://www.sxf.uevora.pt/wp-content/uploads/2013/03/Barnett_2012.pdf. Accessed 12 Aug 2016

  4. Bleazard, A.V.: Sexuality and intellectual disability: perspectives of young women with intellectual disability. Ph.D. Thesis. Department of Educational Psychology, University of Stellenbosch, Cape Town, South Africa (2010)

  5. Block, P., Shuttleworth, R., Pratt, J., Block, H., Rammler, L.: Disability, sexuality and Intimacy. In: Pollard, N., Sakellariou, D. (eds.) Politics of occupation centred practice: reflections on occupational engagement across cultures, pp. 162–179. Wiley, West Sussex (2012)

    Google Scholar 

  6. Brown, R.D., Pirtle, T.: Beliefs of professional and family caregivers about the sexuality of individuals with intellectual disabilities: examining beliefs using a Q methodology approach. Sex Educ. 8(1), 59–75 (2008). https://doi.org/10.1080/14681810701811829

    Article  Google Scholar 

  7. Charmaz, K.: Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Sage Publications, London (2006)

    Google Scholar 

  8. Chou, Y.C., Lu, Z.Y.: Deciding about sterilization: perspectives from women with an intellectual disability and their families in Taiwan. J. Intellect. Disabil. Res. 55(1), 63–74 (2011). https://doi.org/10.1111/j.1365-2788.2010.01347.x

    Article  PubMed  Google Scholar 

  9. Clawson, R., Fyson, R.: Forced marriage of people with learning disabilities: a human rights issue. Disabil. Soc. 32(6), 810–830 (2017). https://doi.org/10.1080/09687599.2017.1320271

    Article  Google Scholar 

  10. Donald Beasley Institute. “I am here”. The Article 19 Project: Finding a place for the life stories of disabled people. http://www.ccsdisabilityaction.org.nz/assets/Uploads/article-19-research.pdf (2013). Accessed 20 Sept 2017

  11. Drummond, E.: Attitudes towards sexuality: a pilot study in Ireland. Learn. Disabil. Pract. 9(4), 28–34 (2006). https://doi.org/10.7748/ldp2006.05.9.4.28.c4283

    Article  Google Scholar 

  12. Dupras, A., Dionne, H.: The concern of parents regarding the sexuality of their child with a mild intellectual disability. Sexologies 23(4), e79–e83 (2014). https://doi.org/10.1016/j.sexol.2013.09.002

    Article  Google Scholar 

  13. Fitzmaurice, S.: Adventures in child-rearing: the sexual life of a child growing up with Down syndrome. Disabil. Stud. Q. 22(4), 28–40 (2002)

    Article  Google Scholar 

  14. Foley, S.: Reluctant ‘Jailors’ speak out: parents of adults with down syndrome living in the parental home on how they negotiate the tension between empowering and protecting their intellectually disabled sons and daughters. Br. J. Learn. Disabil. 41(4), 304–311 (2013). https://doi.org/10.1111/j.1468-3156.2012.00758.x

    Article  Google Scholar 

  15. Foley, S.: A Foucauldian reading of mothers’ views on the paternalism/autonomy debate in relation to the sexual practices of their intellectually disabled adult sons and daughters. Irish J. Sociol. 22(2), 64–85 (2014). https://doi.org/10.7227/ijs.22.2.4

    Article  Google Scholar 

  16. Gilmore, L., Cuskelly, M.: Vulnerability to loneliness in people with intellectual disability: an explanatory model. J. Policy Pract. Intellect. Disabil. 11(3), 192–199 (2014). https://doi.org/10.1111/jppi.12089

    Article  Google Scholar 

  17. Glaser, B.G., Strauss, A.L.: The discovery of grounded theory: strategies for qualitative research. Aldine Publishing Company, Chicago (1967)

    Google Scholar 

  18. Goodley, D.: Disability Studies: An Interdisciplinary Introduction. SAGE, London (2011)

    Google Scholar 

  19. Healy, E., McGuire, B.E., Evans, D.S., Carley, S.N.: Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives. J. Intellect. Disabil. Res. 53(11), 905–912 (2009). https://doi.org/10.1111/j.1365-2788.2009.01203

    Article  PubMed  Google Scholar 

  20. Kahonde, C.: A grounded theory study of family caregivers’ responses to the sexuality of young adults with intellectual disabilities. Ph.D. thesis, University of Cape Town, South Africa (2016)

  21. Kohn, N.A., Blumenthal, J.A., Campbell, A.T.: Supported decision-making: a viable alternative to guardianship? Penn. State Law Rev. 117(4), 1111–1158 (2013). https://doi.org/10.2139/ssrn.2161115

    Article  Google Scholar 

  22. Lafferty, A., McConkey, R., Simpson, A.: Reducing the barriers to relationships and sexuality education for persons with intellectual disabilities. J Intellect. Disabil. 16(1), 29–43 (2012). https://doi.org/10.1177/1744629512438034

    Article  PubMed  Google Scholar 

  23. Löfgren-Mårtenson, L.: The invisibility of young homosexual women and men with intellectual disabilities. Sex Disabil. 27(1), 21–26 (2009). https://doi.org/10.1007/s11195-008-9101-0

    Article  Google Scholar 

  24. May, D., Simpson, M.K.: The parent trap: marriage, parenthood and adulthood for people with intellectual disabilities. Crit. Soc. Policy 23(1), 25–43 (2003)

    Article  Google Scholar 

  25. Mckenzie, J.A.: Living options. In: Johns, R., Adnams, C. (eds.) Understanding Intellectual Disability: A Handbook for Families, Staff, Students and Professionals, pp. 96–100. Western Cape Forum for Intellectual Disability, Cape Town (2016)

    Google Scholar 

  26. Mckenzie, J.A., McConkey, R., Adnams, C.: Residential facilities for adults with intellectual disability in a developing country: a case study from South Africa. J. Intellect. Dev. Disabil. 39(1), 45–54 (2014). https://doi.org/10.3109/13668250.2013.865157

    Article  Google Scholar 

  27. Mckenzie, J.A., McConkey, R.: Caring for adults with intellectual disability: the perspectives of family carers in South Africa. J. Appl. Res. Intellect. Disabil. 29(6), 531–541 (2015). https://doi.org/10.1111/jar.12209

    Article  PubMed  Google Scholar 

  28. Pan, L., Ye, J.: Sexuality and marriage of women with intellectual disability in male squeezed rural China. Sex Disabil. 30(2), 149–160 (2011). https://doi.org/10.1007/s11195-0119232-6

    Article  Google Scholar 

  29. Pownall, J.D., Jahoda, A., Hastings, R., Kerr, L.: Sexual understanding and development of young people with intellectual disabilities: mothers’ perspectives of within family context. Am. J. Intellect. Dev. Disabil. 116(3), 205–219 (2011). https://doi.org/10.1352/1944-7558-116.3.205

    Article  Google Scholar 

  30. Pownall, J.D., Jahoda, A., Hastings, R.: Sexuality and sex education of adolescents with intellectual disability: mothers’ attitudes, experiences, and support needs. J. Intellect. Dev. Disabil. 50(2), 140–154 (2012). https://doi.org/10.1352/1934-9556-50.2.140

    Article  Google Scholar 

  31. Sait, W., Lorenzo, T., Steyn, M., van Zyl, M.: Nurturing the sexuality of disabled girls: the challenges of parenting for mothers. In: Steyn, M., van Zyl, M. (eds.) The Prize and the Price, Shaping Sexuality in South Africa, pp. 192–219. HSRC Press, South Africa (2010)

    Google Scholar 

  32. Shakespeare, T.: Disability Rights and Wrongs Revisited, 2nd edn. Routledge, New York (2013)

    Google Scholar 

  33. Strauss, A., Corbin, J.: Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 2nd edn. Sage Publications, Thousand Oaks (1998)

    Google Scholar 

  34. United Nations.: Convention on the Rights of Persons with Disabilities. http://www.un.org/disabilities/convention/conventionfull.shtml (2006). Accessed 13 Feb 2013

  35. Wilson, N.J., Jaques, H., Johnson, A., Brotherton, M.L.: From social exclusion to supported inclusion: adults with intellectual disability discuss their lived experiences of a structured social group. J. Appl. Res. Intellect. Disabil. 30(5), 847–858 (2017). https://doi.org/10.1111/jar.12275

    Article  PubMed  Google Scholar 

  36. World Medical Association: World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA 310(2), 2191–2194 (2013). https://doi.org/10.1001/jama.2013.281053

    Article  Google Scholar 

Download references

Acknowledgements

The study was funded by the Vera Grover Scholarship and Sponsorship Trust and University of Cape Town Spirit of 68 Award.

Author information

Authors and Affiliations

  1. Disability Studies Division, Department of Health and Rehabilitation Sciences, University of Cape Town, Cape Town, South Africa

    Callista K. Kahonde & Judith McKenzie

  2. Centre for Rehabilitation Studies, Department of Global Health, Stellenbosch University, Cape Town, South Africa

    Callista K. Kahonde

  3. School of Nursing and Midwifery, Western Sydney University, Richmond, NSW, Australia

    Nathan J. Wilson

Authors
  1. Callista K. Kahonde
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Judith McKenzie
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Nathan J. Wilson
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Callista K. Kahonde.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards [36].

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Kahonde, C.K., McKenzie, J. & Wilson, N.J. The Impact of Lifelong Family Care on Family Caregivers’ Perceptions of the Sexuality of Young Adults with Intellectual Disabilities in the Western Cape of South Africa. Sex Disabil 38, 95–105 (2020). https://doi.org/10.1007/s11195-019-09595-2

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11195-019-09595-2

Keywords

Search

Navigation