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Views and Experiences of People with Intellectual Disabilities Regarding Intimate Relationships: A Qualitative Metasynthesis

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Abstract

The aims of this review were to systematically identify, critically appraise and synthesize the results of existing qualitative literature exploring the views and experiences of intimate relationships amongst people with intellectual disabilities. Fourteen peer-reviewed articles were identified through a systematic search of eight databases, reference lists, citations, and relevant journals. The identified articles were appraised for quality, then synthesized using a metaethnography approach. No study met all quality criteria and references to ethical approval were often lacking. Interpretation of the findings suggested three key themes: the meaning of intimate relationships, external constraints and facilitators, and managing external constraints. Though many people with intellectual disabilities desire and benefit from intimate relationships, they experience restrictions that others do not, which can lead to isolation and loneliness. Intimate relationships are not always necessarily linked with sexual behavior; therefore, intimate relationships warrant their own focus in future research, as well as in education and training for people with intellectual disabilities and their caregivers. Within this, a commitment to transparency over research processes is needed, in particular with reference to how ethical approval was obtained, since this has been a shortcoming of research with this focus to date.

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Notes

  1. Command line syntax and reserve words adapted to meet the requirements of each database.

  2. Those who appear to meet the current diagnostic criteria [48].

References

  1. Drew, C.J., Hardman, M.L.: Mental Retardation: A Lifespan Approach to People with Intellectual Disabilities. Prentice Hall, New Jersey (2004)

    Google Scholar 

  2. McCarthy, M.: Sexuality and Women with Learning Disabilities. Jessica Kingsley Publishers, London (1999)

    Google Scholar 

  3. McRuer, R., Mollow, A.: Introduction. In: McRuer, R., Mollow, A. (eds.) Sex and Disability, pp. 1–34. Duke University Press, Durham (2012)

    Chapter  Google Scholar 

  4. Szollos, A.A., McCabe, M.P.: The sexuality of people with mild intellectual disability: perceptions of clients and caregivers. Aust. N. Z. J. Dev. Disabil. 20(3), 205–222 (1995)

    Google Scholar 

  5. Wolfensberger, W.: The Principle of Normalisation. National Institute on Mental Retardation, Toronto (1972)

    Google Scholar 

  6. Wolfensberger, W.: Social role valorization: a proposed new term for the principle of normalization. Ment. Retard. 21(6), 234 (1983)

    PubMed  Google Scholar 

  7. Thompson, J.R., Hughes, C., Schalock, R.L., Silverman, W., Tassé, M.J., Bryant, B., Craig, E.M., Campbell, E.M.: Integrating supports in assessment and planning. Ment. Retard. 40(5), 390–405 (2002)

    Article  PubMed  Google Scholar 

  8. United Nations: Universal Convention on the Rights of Persons with Disabilities. United Nations, New York (2006)

    Google Scholar 

  9. Department of Health: Valuing People: A New Strategy for Learning Disability for the 21st Century. The Stationery Office, London (2001)

    Google Scholar 

  10. Department of Health: Valuing People Now: A Three-Year Strategy for People with Learning Disabilities. The Stationery Office, London (2009)

    Google Scholar 

  11. Rushbrooke, E., Murray, C.D., Townsend, S.: What difficulties are experienced by caregivers in relation to the sexuality of people with intellectual disabilities? A qualitative meta-synthesis. Res. Dev. Disabil. 35(4), 871–886 (2014)

    Article  PubMed  Google Scholar 

  12. Evans, D., McGuire, B., Healy, E., Carley, S.: Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives. J. Intellect. Disabil. Res. 53(11), 913–921 (2009)

    Article  PubMed  Google Scholar 

  13. Futcher, S.: Attitudes to sexuality of patients with learning disabilities: a review. Br. J. Nurs. 20(1), 8–14 (2011)

    Article  PubMed  Google Scholar 

  14. Löfgren-Mårtenson, L.: “May I?” About sexuality and love in the new generation with intellectual disabilities. Sex. Disabil. 22(3), 197–207 (2004)

    Article  Google Scholar 

  15. Ryan, D., McConkey, R.: Staff attitudes to sexuality and people with intellectual disabilities. Ir. J. Psychol. 21(1–2), 88–97 (2000)

    Article  Google Scholar 

  16. Brown, H.: ‘An ordinary sexual life?’: a review of the normalisation principle as it applies to the sexual options of people with learning disabilities. Disabil. Soc. 9(2), 123–144 (1994)

    Article  Google Scholar 

  17. Wilkinson, V.J., Theodore, K., Raczka, R.: ‘As normal as possible’: sexual identity development in people with intellectual disabilities transitioning to adulthood. Sex. Disabil. 33(1), 93–105 (2015)

    Article  Google Scholar 

  18. Bernert, D.J.: Sexuality and disability in the lives of women with intellectual disabilities. Sex. Disabil. 29(2), 129–141 (2011)

    Article  Google Scholar 

  19. Cuskelly, M., Bryde, R.: Attitudes towards the sexuality of adults with an intellectual disability: parents, support staff, and a community sample. J. Intellect. Dev. Disabil. 29(3), 255–264 (2004)

    Article  Google Scholar 

  20. Murphy, G.H., O’Callaghan, A.: Capacity of adults with intellectual disabilities to consent to sexual relationships. Psychol. Med. 34(07), 1347–1357 (2004)

    Article  PubMed  Google Scholar 

  21. Beail, N., Williams, K.: Using qualitative methods in research with people who have intellectual disabilities. J. Appl. Res. Intellect. 27(2), 85–96 (2014)

    Article  Google Scholar 

  22. Fitzgerald, C., Withers, P.: ‘I don’t know what a proper woman means’: what women with intellectual disabilities think about sex, sexuality and themselves. Br. J. Learn. Disabil. 41(1), 5–12 (2013)

    Article  Google Scholar 

  23. Blanchflower, D.G., Oswald, A.J.: Money, sex and happiness: an empirical study. Scand. J. Econ. 106(3), 393–415 (2004)

    Article  Google Scholar 

  24. Brown, I.: Embracing quality of life in times of spending restraint. J. Intellect. Dev. Disabil. 24(4), 299–308 (1999)

    Article  Google Scholar 

  25. Morentin, R., Arias, B., Jenaro, C., Rodríguez-Mayoral, J., McCarthy, M.: Love and loving relationships in people with learning disabilities: a scientific approach. Tizard Learn. Disabil. Rev. 13(2), 33–41 (2008)

    Article  Google Scholar 

  26. Brown, R.I.: Quality of life issues in aging and intellectual disability. Aust. N. Z. J. Dev. Disabil. 18(4), 219–227 (1993)

    Google Scholar 

  27. Cummins, R.A., Lau, A.L.: Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. J. Appl. Res. Intellect. 16(2), 145–157 (2003)

    Article  Google Scholar 

  28. Power, M., Green, A.: Development of the WHOQOL disabilities module. Qual. Life Res. 19(4), 571–584 (2010)

    Article  PubMed  Google Scholar 

  29. Schalock, R.L.: Reconsidering the conceptualisation and measurement of quality of life. In: Schalock, R. (ed.) Quality of Life: Conceptualisation and Measurement, vol. 1, pp. 123–139. American Association of Mental Retardation, Washington, DC (1996)

    Google Scholar 

  30. Newton, J.S., Horner, R.H., Ard, W.R., LeBaron, N., Sappington, G.: A conceptual model for improving the social life of individuals with mental retardation. Ment. Retard. 32(6), 393 (1994)

    PubMed  Google Scholar 

  31. Bayley, M.: What Price Friendship?: Encouraging the Relationships of People with Learning Difficulties. Hexagon Publishing, Wootton Courtenay (1997)

    Google Scholar 

  32. Emerson, E., Malam, S., Davies, I., Spencer, K.: Adults with Learning Disabilities in England 2003/4. London. Health and Social Care Information Centre, London (2005)

    Google Scholar 

  33. Office for National Statistics: 2011 Census, Key Statistics and Quick Statistics for Wards and Output Areas in England and Wales. http://webarchive.nationalarchives.gov.uk/20160105160709/ http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77-286348 (2013). Accessed 24 June 2016

  34. Robertson, J., Emerson, E., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A., Linehan, C.: Social networks of people with mental retardation in residential settings. Ment. Retard. 39(3), 201–214 (2001)

    Article  PubMed  Google Scholar 

  35. Forrester-Jones, R., Carpenter, J., Coolen-Schrijner, P., Cambridge, P., Tate, A., Beecham, J., Hallam, A., Knapp, M., Wooff, D.: The social networks of people with intellectual disability living in the community 12 years after resettlement from long-stay hospitals. J. Appl. Res. Intellect. 19(4), 285–295 (2006)

    Article  Google Scholar 

  36. Williams, F., Scott, G., McKechanie, A.: Sexual health services and support: the views of younger adults with intellectual disability. J. Intellect. Dev. Disabil. 39(2), 147–156 (2014)

    Article  Google Scholar 

  37. Frawley, P., Bigby, C.: “I’m in their shoes”: experiences of peer educators in sexuality and relationship education. J. Intellect. Dev. Disabil. 39(2), 167–176 (2014)

    Article  Google Scholar 

  38. Zigler, E.: Looking back 40 years and still seeing the person with mental retardation as a whole person. In: Switzky, H.N. (ed.) Personality and Motivational Differences in Persons with Mental Retardation, pp. 3–55. Lawrence Erlbaum, Mahwah (2001)

    Google Scholar 

  39. Zigler, E.: A veteran worker urges renewed research on personality factors in mental retardation. Jpn. J. Special Educ. 39(6), 1–14 (2002)

    Article  Google Scholar 

  40. Kitson, D.: Concerns about people with learning disabilities being sexually abused. In: McCarthy, M., Thompson, D. (eds.) Sexuality and Learning Disability: A Handbook, pp. 125–140. Pavillion Publishing, Brighton (2010)

    Google Scholar 

  41. McCarthy, M., Thompson, D. (eds.): Sexuality and Learning Disabilities: A Handbook. Pavilion Publishing, Brighton (2010)

    Google Scholar 

  42. Craft, A., Craft, M.: Handicapped Married Couples. Routledge & Kegan Paul, London (1979)

    Google Scholar 

  43. Koller, H., Richardson, S., Katz, M.: Marriage in a young adult mentally retarded population. J. Intellect. Disabil. Res. 32(2), 93–102 (1988)

    Article  Google Scholar 

  44. Mattinson, J.: Marriage and Mental Handicap. University of Pittsburgh Press, Pittsburgh (1971)

    Google Scholar 

  45. Grieve, A., McLaren, S., Lindsay, W., Culling, E.: Staff attitudes towards the sexuality of people with learning disabilities: a comparison of different professional groups and residential facilities. Br. J. Learn. Disabil. 37(1), 76–84 (2009)

    Article  Google Scholar 

  46. Shaw, R.L., Booth, A., Sutton, A.J., Miller, T., Smith, J.A., Young, B., Jones, D.R., Dixon-Woods, M.: Finding qualitative research: an evaluation of search strategies. BMC Med. Res. Methodol. 4(1), 1 (2004)

    Article  Google Scholar 

  47. Liberati, A., Altman, D.G., Tetzlaff, J., Mulrow, C., Gøtzsche, P.C., Ioannidis, J.P.A., Clarke, M., Devereaux, P.J., Kleijnen, J., Moher, D.: The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. J. Clin. Epidemiol. 62(10), e1–e34 (2009)

    Article  PubMed  Google Scholar 

  48. American Psychiatric Association (APA): Diagnostic and Statistical Manual of Mental Disorders, 5th edn. American Psychiatric Publishing, Arlington (2013)

    Book  Google Scholar 

  49. The Joanna Briggs Institute: The Joanna Briggs Institute Critical Appraisal tools for Use in JBI Systematic Reviews: Checklist for Qualitative Research. http://joannabriggs.org/assets/docs/critical-appraisal-tools/JBI_Critical_Appraisal-Checklist_for_Qualitative_Research.pdf (2016). Accessed 13 July 2016

  50. Hannes, K., Lockwood, C., Pearson, A.: A comparative analysis of three online appraisal instruments’ ability to assess validity in qualitative research. Qual. Health Res. 20(12), 1736–1743 (2010)

    Article  PubMed  Google Scholar 

  51. Booth, T.A., Booth, W.: Parenting Under Pressure: Mothers and Fathers with Learning Difficulties. Open University, Buckingham (1994)

    Google Scholar 

  52. Higgins, J.P., Green, S.M. (eds.): Cochrane Handbook for Systematic Reviews of Interventions. Wiley-Blackwell, Chichester (2008)

    Google Scholar 

  53. Dixon-Woods, M., Sutton, A., Shaw, R., Miller, T., Smith, J., Young, B., Bonas, S., Booth, A., Jones, D.: Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. J. Health Serv. Res. Policy 12(1), 42–47 (2007)

    Article  PubMed  Google Scholar 

  54. Noblit, G.W., Hare, R.D.: Meta-Ethnography: Synthesizing Qualitative Studies. Sage, London (1988)

    Book  Google Scholar 

  55. Bane, G., Deely, M., Donohoe, B., Dooher, M., Flaherty, J., Iriarte, E.G., Hopkins, R., Mahon, A., Minogue, G., Donagh, P.M., Doherty, S.O., Curry, M., Shannon, S., Tierney, E., Wolfe, M.: Relationships of people with learning disabilities in Ireland. Br. J. Learn. Disabil. 40(2), 109–122 (2012)

    Article  Google Scholar 

  56. Bates, C., Terry, L., Popple, K.: Partner selection for people with intellectual disabilities. J. Appl. Res. Intellect. (2016). doi:10.1111/jar.12254

    Google Scholar 

  57. Healy, E., McGuire, B., Evans, D., Carley, S.: Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives. J. Intellect. Disabil. Res. 53(11), 905–912 (2009)

    Article  PubMed  Google Scholar 

  58. Heyman, B.: Sexuality as a perceived hazard in the lives of adults with learning difficulties. Disabil. Soc. 10(2), 139–156 (1995)

    Article  Google Scholar 

  59. Johnson, K., Frawley, P., Hillier, L., Harrison, L.: Living safer sexual lives: research and action. Tizard Learn. Disabil. Rev. 7(3), 4–9 (2002)

    Article  Google Scholar 

  60. Kelly, G., Crowley, H., Hamilton, C.: Rights, sexuality and relationships in Ireland: ‘It’d be nice to be kind of trusted’. Br. J. Learn. Disabil. 37(4), 308–315 (2009)

    Article  Google Scholar 

  61. Knox, M., Hickson, F.: The meanings of close friendship: the views of four people with intellectual disabilities. J. Appl. Res. Intellect. 14(3), 276–291 (2001)

    Article  Google Scholar 

  62. Lafferty, A., McConkey, R., Taggart, L.: Beyond friendship: the nature and meaning of close personal relationships as perceived by people with learning disabilities. Disabil. Soc. 28(8), 1074–1088 (2013)

    Article  Google Scholar 

  63. Lesseliers, J., Van Hove, G.: Barriers to the development of intimate relationships and the expression of sexuality among people with developmental disabilities: their perceptions. Res. Pract. Pers. Sev. D. 27(1), 69–81 (2002)

    Article  Google Scholar 

  64. Neuman, R., Reiter, S.: Couple relationships as perceived by people with intellectual disability—implications for quality of life and self-concept. Int. J. Dev. Disabil. (2016). doi:10.1080/20473869.2016.1173422

    Google Scholar 

  65. Rushbrooke, E., Murray, C., Townsend, S.: The experiences of intimate relationships by people with intellectual disabilities: a qualitative study. J. Appl. Res. Intellect. 27(6), 531–541 (2014)

    Article  Google Scholar 

  66. Sullivan, F., Bowden, K., McKenzie, K., Quayle, E.: ‘Touching people in relationships’: a qualitative study of close relationships for people with an intellectual disability. J. Clin. Nurs. 22(23–24), 3456–3466 (2013)

    Article  PubMed  Google Scholar 

  67. Turner, G.W., Crane, B.: Pleasure is paramount: adults with intellectual disabilities discuss sensuality and intimacy. Sexualities 19(5–6), 677–697 (2016)

    Article  Google Scholar 

  68. White, E., Barnitt, R.: Empowered or discouraged? A study of people with learning disabilities and their experience of engaging in intimate relationships. Br. J. Occup. Ther. 63(6), 270–276 (2000)

    Article  Google Scholar 

  69. Lesseliers, J.: A right to sexuality? Br. J. Learn. Disabil. 27(4), 137–140 (1999)

    Article  Google Scholar 

  70. Sandelowski, M., Docherty, S., Emden, C.: Qualitative metasynthesis: issues and techniques. Res. Nurs. Health 20, 365–372 (1997)

    Article  PubMed  Google Scholar 

  71. Festinger, L.: A Theory of Cognitive Dissonance. Row, Peterson, Evanston (1957)

    Google Scholar 

  72. Lloyd, V., Gatherer, A., Kalsy, S.: Conducting qualitative interview research with people with expressive language difficulties. Qual. Health Res. 16(10), 1386–1404 (2006)

    Article  PubMed  Google Scholar 

  73. Estabrooks, C.A., Field, P.A., Morse, J.M.: Aggregating qualitative findings: an approach to theory development. Qual. Health Res. 4(4), 503–511 (1994)

    Article  Google Scholar 

  74. Jensen, L.A., Allen, M.N.: Meta-synthesis of qualitative findings. Qual. Health Res. 6(4), 553–560 (1996)

    Article  Google Scholar 

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Acknowledgements

This work was supported by the Trent Doctoral Training Programme in Clinical Psychology, Division of Psychiatry and Applied Psychology, University of Nottingham, YANG Fujia Building, B Floor, Jubilee Campus, Wollaton Road, Nottingham NG8 1BB. The author would like to thank Dr Jennifer Clegg (Institute of Mental Health, University of Nottingham) for her advice.

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  1. Division of Psychiatry and Applied Psychology, University of Nottingham, Yang Fujia Building, B Floor, Jubilee Campus, Wollaton Road, Nottingham, NG8 1BB, UK

    Brad English, Anna Tickle & Roshan dasNair

  2. C22, Institute of Mental Health, University of Nottingham, Jubilee Campus, Nottingham, NG8 1BB, UK

    Roshan dasNair

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  1. Brad English
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  2. Anna Tickle
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  3. Roshan dasNair
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Correspondence to Anna Tickle.

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English, B., Tickle, A. & dasNair, R. Views and Experiences of People with Intellectual Disabilities Regarding Intimate Relationships: A Qualitative Metasynthesis. Sex Disabil 36, 149–173 (2018). https://doi.org/10.1007/s11195-017-9502-z

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