Sexuality and Disability

, Volume 36, Issue 2, pp 149–173 | Cite as

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

  • Brad English
  • Anna TickleEmail author
  • Roshan dasNair
Original Paper


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.


Intellectual disabilities Intimate relationships Romance Couples Metasynthesis United Kingdom 



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.


  1. 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. 2.
    McCarthy, M.: Sexuality and Women with Learning Disabilities. Jessica Kingsley Publishers, London (1999)Google Scholar
  3. 3.
    McRuer, R., Mollow, A.: Introduction. In: McRuer, R., Mollow, A. (eds.) Sex and Disability, pp. 1–34. Duke University Press, Durham (2012)CrossRefGoogle Scholar
  4. 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. 5.
    Wolfensberger, W.: The Principle of Normalisation. National Institute on Mental Retardation, Toronto (1972)Google Scholar
  6. 6.
    Wolfensberger, W.: Social role valorization: a proposed new term for the principle of normalization. Ment. Retard. 21(6), 234 (1983)PubMedGoogle Scholar
  7. 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)CrossRefPubMedGoogle Scholar
  8. 8.
    United Nations: Universal Convention on the Rights of Persons with Disabilities. United Nations, New York (2006)Google Scholar
  9. 9.
    Department of Health: Valuing People: A New Strategy for Learning Disability for the 21st Century. The Stationery Office, London (2001)Google Scholar
  10. 10.
    Department of Health: Valuing People Now: A Three-Year Strategy for People with Learning Disabilities. The Stationery Office, London (2009)Google Scholar
  11. 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)CrossRefPubMedGoogle Scholar
  12. 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)CrossRefPubMedGoogle Scholar
  13. 13.
    Futcher, S.: Attitudes to sexuality of patients with learning disabilities: a review. Br. J. Nurs. 20(1), 8–14 (2011)CrossRefPubMedGoogle Scholar
  14. 14.
    Löfgren-Mårtenson, L.: “May I?” About sexuality and love in the new generation with intellectual disabilities. Sex. Disabil. 22(3), 197–207 (2004)CrossRefGoogle Scholar
  15. 15.
    Ryan, D., McConkey, R.: Staff attitudes to sexuality and people with intellectual disabilities. Ir. J. Psychol. 21(1–2), 88–97 (2000)CrossRefGoogle Scholar
  16. 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)CrossRefGoogle Scholar
  17. 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)CrossRefGoogle Scholar
  18. 18.
    Bernert, D.J.: Sexuality and disability in the lives of women with intellectual disabilities. Sex. Disabil. 29(2), 129–141 (2011)CrossRefGoogle Scholar
  19. 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)CrossRefGoogle Scholar
  20. 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)CrossRefPubMedGoogle Scholar
  21. 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)CrossRefGoogle Scholar
  22. 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)CrossRefGoogle Scholar
  23. 23.
    Blanchflower, D.G., Oswald, A.J.: Money, sex and happiness: an empirical study. Scand. J. Econ. 106(3), 393–415 (2004)CrossRefGoogle Scholar
  24. 24.
    Brown, I.: Embracing quality of life in times of spending restraint. J. Intellect. Dev. Disabil. 24(4), 299–308 (1999)CrossRefGoogle Scholar
  25. 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)CrossRefGoogle Scholar
  26. 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. 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)CrossRefGoogle Scholar
  28. 28.
    Power, M., Green, A.: Development of the WHOQOL disabilities module. Qual. Life Res. 19(4), 571–584 (2010)CrossRefPubMedGoogle Scholar
  29. 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. 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)PubMedGoogle Scholar
  31. 31.
    Bayley, M.: What Price Friendship?: Encouraging the Relationships of People with Learning Difficulties. Hexagon Publishing, Wootton Courtenay (1997)Google Scholar
  32. 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. 33.
    Office for National Statistics: 2011 Census, Key Statistics and Quick Statistics for Wards and Output Areas in England and Wales. (2013). Accessed 24 June 2016
  34. 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)CrossRefPubMedGoogle Scholar
  35. 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)CrossRefGoogle Scholar
  36. 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)CrossRefGoogle Scholar
  37. 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)CrossRefGoogle Scholar
  38. 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. 39.
    Zigler, E.: A veteran worker urges renewed research on personality factors in mental retardation. Jpn. J. Special Educ. 39(6), 1–14 (2002)CrossRefGoogle Scholar
  40. 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. 41.
    McCarthy, M., Thompson, D. (eds.): Sexuality and Learning Disabilities: A Handbook. Pavilion Publishing, Brighton (2010)Google Scholar
  42. 42.
    Craft, A., Craft, M.: Handicapped Married Couples. Routledge & Kegan Paul, London (1979)Google Scholar
  43. 43.
    Koller, H., Richardson, S., Katz, M.: Marriage in a young adult mentally retarded population. J. Intellect. Disabil. Res. 32(2), 93–102 (1988)CrossRefGoogle Scholar
  44. 44.
    Mattinson, J.: Marriage and Mental Handicap. University of Pittsburgh Press, Pittsburgh (1971)Google Scholar
  45. 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)CrossRefGoogle Scholar
  46. 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)CrossRefGoogle Scholar
  47. 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)CrossRefPubMedGoogle Scholar
  48. 48.
    American Psychiatric Association (APA): Diagnostic and Statistical Manual of Mental Disorders, 5th edn. American Psychiatric Publishing, Arlington (2013)CrossRefGoogle Scholar
  49. 49.
    The Joanna Briggs Institute: The Joanna Briggs Institute Critical Appraisal tools for Use in JBI Systematic Reviews: Checklist for Qualitative Research. (2016). Accessed 13 July 2016
  50. 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)CrossRefPubMedGoogle Scholar
  51. 51.
    Booth, T.A., Booth, W.: Parenting Under Pressure: Mothers and Fathers with Learning Difficulties. Open University, Buckingham (1994)Google Scholar
  52. 52.
    Higgins, J.P., Green, S.M. (eds.): Cochrane Handbook for Systematic Reviews of Interventions. Wiley-Blackwell, Chichester (2008)Google Scholar
  53. 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)CrossRefPubMedGoogle Scholar
  54. 54.
    Noblit, G.W., Hare, R.D.: Meta-Ethnography: Synthesizing Qualitative Studies. Sage, London (1988)CrossRefGoogle Scholar
  55. 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)CrossRefGoogle Scholar
  56. 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. 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)CrossRefPubMedGoogle Scholar
  58. 58.
    Heyman, B.: Sexuality as a perceived hazard in the lives of adults with learning difficulties. Disabil. Soc. 10(2), 139–156 (1995)CrossRefGoogle Scholar
  59. 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)CrossRefGoogle Scholar
  60. 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)CrossRefGoogle Scholar
  61. 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)CrossRefGoogle Scholar
  62. 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)CrossRefGoogle Scholar
  63. 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)CrossRefGoogle Scholar
  64. 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. 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)CrossRefGoogle Scholar
  66. 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)CrossRefPubMedGoogle Scholar
  67. 67.
    Turner, G.W., Crane, B.: Pleasure is paramount: adults with intellectual disabilities discuss sensuality and intimacy. Sexualities 19(5–6), 677–697 (2016)CrossRefGoogle Scholar
  68. 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)CrossRefGoogle Scholar
  69. 69.
    Lesseliers, J.: A right to sexuality? Br. J. Learn. Disabil. 27(4), 137–140 (1999)CrossRefGoogle Scholar
  70. 70.
    Sandelowski, M., Docherty, S., Emden, C.: Qualitative metasynthesis: issues and techniques. Res. Nurs. Health 20, 365–372 (1997)CrossRefPubMedGoogle Scholar
  71. 71.
    Festinger, L.: A Theory of Cognitive Dissonance. Row, Peterson, Evanston (1957)Google Scholar
  72. 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)CrossRefPubMedGoogle Scholar
  73. 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)CrossRefGoogle Scholar
  74. 74.
    Jensen, L.A., Allen, M.N.: Meta-synthesis of qualitative findings. Qual. Health Res. 6(4), 553–560 (1996)CrossRefGoogle Scholar

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© Springer Science+Business Media, LLC 2017

Authors and Affiliations

  1. 1.Division of Psychiatry and Applied PsychologyUniversity of NottinghamNottinghamUK
  2. 2.C22, Institute of Mental HealthUniversity of NottinghamNottinghamUK

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