Advertisement

Understanding Sexuality and Disability: Using Interpretive Hermeneutic Phenomenological Approaches

  • Tinashe DuneEmail author
  • Elias Mpofu
Reference work entry

Abstract

Disability, and those who live with disability, has been researched widely by scholars across a number of fields. However, there has been relatively little research on how people with cerebral palsy (CP) construct their own sexuality and the importance of the sexual scripts involved in this process. Given that sexuality is a fundamental human right with links to identity, health, and belonging, it is important for researchers in this area to engage deeply with understandings of how people with CP construct, understand, and experience their sexuality. This chapter introduces readers to researching constructions, understandings, and experiences of sexuality by applying an Interpretive Hermeneutic Phenomenological Approach (IHPA) with people with moderate to severe CP. It discusses the rational and processes for applying IHPA to engage participants in these sensitive and complex discussions on their lived experiences of understandings of sexuality. The chapter also provides procedural guidelines for applying IHPA to studying sexuality with CP in addition to the strengths and limitations of this approach. IHPA provides a unique advantage to studying heath issues with hidden populations or socially sensitive topics with the general population.

Keywords

Physical disability Sexuality Hermeneutic phenomenology Qualitative methodology Trustworthiness 

References

  1. Alvarelhão J, Lopes D. A Guttman scale to assess knowledge about sexually transmitted diseases in adults with cerebral palsy. Sex Disabil. 2016;34(4):485–493.CrossRefGoogle Scholar
  2. Atkinson R, Flint J. Accessing hidden and hard-to-reach populations: snowball research strategies. Soc Res Updat. 2001;33(1):1–4.Google Scholar
  3. Corbin J, Strauss A. Grounded theory research: procedures, canons and evaluative criteria. Z Soziol. 1990;19(6):418–27.Google Scholar
  4. Dune T. Making sense of sex with people with cerebral palsy. Unpublished PhD thesis, University of Sydney, Sydney. 2011.Google Scholar
  5. Dune T. Understanding experiences of sexuality with cerebral palsy through sexual script theory. Int J Soc Sci Stud. 2012a;1(1):1–12.CrossRefGoogle Scholar
  6. Dune TM. Sexuality and physical disability: exploring the barriers and solutions in healthcare. Sex Disabil. 2012b;30(2):247–55.  https://doi.org/10.1007/s11195-012-9262-8.CrossRefGoogle Scholar
  7. Dune TM. Re/developing models for understanding sexuality with disability within rehabilitation counselling. Electron J Hum Sex. 2013;16(April). http://www.ejhs.org/volume16/Disability.html.
  8. Dune T. Conceptualizing sex with cerebral palsy: a phenomenological exploration of private constructions of sexuality using sexual script theory. Int J Soc Sci Stud. 2014a;2(2):20–40.CrossRefGoogle Scholar
  9. Dune T. Sexuality in chronic illness and disability. In: Johnson A, Chang E, editors. Chronic illness and disability: principles for nursing practice. 2nd ed. Milton: Wiley; 2014b. p. 115–32.Google Scholar
  10. Dune T. “You just don’t see us”: the influence of public schema on constructions of sexuality by people with cerebral palsy. In: Romaniuk SN, Marlin M, editors. Development and the politics of human rights. Roca Raton: CRC Press – Taylor and Francis Group; 2015. p. 223–48.CrossRefGoogle Scholar
  11. Dune T, Mpofu E. Evaluating person-oriented measures to understand sexuality with cerebral palsy: procedures and applications. Int J Soc Sci Stud. 2015;3(4):145–56.CrossRefGoogle Scholar
  12. Dune TM, Shuttleworth RP. “It’s just supposed to happen”: the myth of sexual spontaneity and the sexually marginalized. Sex Disabil. 2009;27(2):97–108.  https://doi.org/10.1007/s11195-009-9119-y.CrossRefGoogle Scholar
  13. Edley N. Analysing masculinity: interpretive repertoire, subject positions and ideological dilemmas. Discourses as data: a guide for analysis. London: Sage; 2001.Google Scholar
  14. Eide P, Kahn D. Ethical issues in the qualitative researcher – participant relationship. Nurs Ethics. 2008;15(2):199–207.CrossRefGoogle Scholar
  15. Emerson C. The outer word and inner speech: Bakhtin, Vygotsky, and the internalization of language. Crit Inq. 1983;10(2):245–64.CrossRefGoogle Scholar
  16. Emmel N, Hughes K, Greenhalgh J, Sales A. Accessing socially excluded people – trust and the gatekeeper in the researcher-participant relationship. Sociol Res Online. 2007;12(2).  https://doi.org/10.5153/sro.1512., http://www.socresonline.org.uk/12/2/emmel.html.CrossRefGoogle Scholar
  17. Esmail S, Huang J, Lee I, Maruska T. Couple’s experiences when men are diagnosed with multiple sclerosis in the context of their sexual relationship. Sex Disabil. 2010;28(1):15–27.CrossRefGoogle Scholar
  18. Heidegger M. Being and time (trans: Macquarrie J, Robinson E). New York: Harper & Row; 1962.Google Scholar
  19. Heracleous L. Discourse, interpretation, organization. Cambridge: Cambridge University Press; 2006.CrossRefGoogle Scholar
  20. Husserl E. Ideas pertaining to a pure phenomenology and to a phenomenological philosophy. Second Book. 1952.Google Scholar
  21. Husserl E. Phantasie, bildbewusstsein, erinnerung zur phänomenologie der anschaulichen vergegenwärtigungen. 1980.Google Scholar
  22. Jackson S, Scott S. Faking like a woman? Towards an interpretive theorization of sexual pleasure. Body Soc. 2007;13(2):95–116.CrossRefGoogle Scholar
  23. Jones K, Wilson B, Weedon D, Bilder D. Care of adults with intellectual and developmental disabilities: cerebral palsy. FP Essent. 2015;439:26–30.Google Scholar
  24. Koch T. Interpretive approaches in nursing research: The influence of Husserl and Heidegger. J Adv Nursing. 1995;21(5):827–836.CrossRefGoogle Scholar
  25. Laverty SM. Hermeneutic phenomenology and phenomenology: A comparison of historical and methodological considerations. International journal of qualitative methods. 2003;2(3):21–35.CrossRefGoogle Scholar
  26. Liamputtong P. Performing qualitative cross-cultural research. Cambridge: Cambridge University Press; 2010.CrossRefGoogle Scholar
  27. Liamputtong P. Qualitative research methods. 4th ed. Melbourne: Oxford University Press; 2013.Google Scholar
  28. Lincoln YS, Guba EG. Naturalistic inquiry, vol. 75. New York: Sage; 1985.Google Scholar
  29. Linton KF, Rueda HA. Dating and sexuality among minority adolescents with disabilities: an application of sociocultural theory. J Hum Behav Soc Environ. 2015;25(2):77–89.CrossRefGoogle Scholar
  30. Mayoux L. Quantitative, qualitative or participatory? Which method, for what and when. Doing Dev Res. 2006:115–29.Google Scholar
  31. McCabe MP, Taleporos G. Sexual esteem, sexual satisfaction, and sexual behavior among people with physical disability. Arch Sex Behav. 2003;32(4):359–69.CrossRefGoogle Scholar
  32. McKiernan M, McCarthy G. Family members’ lived experience in the intensive care unit: a phemenological study. Intensive Crit Care Nurs. 2010;26(5):254–61.CrossRefGoogle Scholar
  33. Oskoui M, Coutinho F, Dykeman J, Jetté N, Pringsheim T. An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol. 2013;55(6):509–19.CrossRefGoogle Scholar
  34. Patton MQ. Two decades of developments in qualitative inquiry: a personal, experiential perspective. Qual Soc Work. 2002;1(3):261–83.CrossRefGoogle Scholar
  35. Polkinghorne D. Methodology for the human sciences: systems of inquiry. New York: Suny Press; 1983.Google Scholar
  36. Ramberg B. Hermeneutics. In: The Stanford encyclopedia of philosophy. Stanford, California: Center for the Study of Language and Information (CSLI), Stanford University, Stanford, California; 2008. http://plato.stanford.edu/archives/sum2008/entries/hermeneutics.
  37. Robards B. Friending participants: managing the researcher–participant relationship on social network sites. Young. 2013;21(3):217–35.CrossRefGoogle Scholar
  38. Shakespeare T. ‘Losing the plot’? Medical and activist discourses of contemporary genetics and disability. Sociol Health Illn. 1999;21(5):669–88.CrossRefGoogle Scholar
  39. Shakespeare T. The social model of disability. Disabil Stud Read. 2006;2:197–204.Google Scholar
  40. Shakespeare T. Disability rights and wrongs revisited. New York: Routledge; 2013.Google Scholar
  41. Shuttleworth RP. The search for sexual intimacy for men with cerebral palsy. Sex Disabil. 2000;18(4):263–82.CrossRefGoogle Scholar
  42. Shuttleworth R. Critical research and policy debates in disability and sexuality studies. Sex Res Soc Policy. 2007;4(1):1–14.CrossRefGoogle Scholar
  43. Shuttleworth R, Russell C, Weerakoon P, Dune T. Sexuality in residential aged care: a survey of perceptions and policies in Australian nursing homes. Sex Disabil. 2010;28(3):187–94.  https://doi.org/10.1007/s11195-010-9164-6.CrossRefGoogle Scholar
  44. Silverman D. Doing qualitative research. New York: Sage; 2009.Google Scholar
  45. Simon W, Gagnon JH. Sexual scripts: permanence and change. Arch Sex Behav. 1986;15(2): 97–120.CrossRefGoogle Scholar
  46. Simon W, Gagnon JH. A sexual scripts approach. In: Geer JH, O’Donohue WT, editors. Theories of human sexuality. New York: Plenum; 1987. p. 363–83.Google Scholar
  47. Simon W, Gagnon JH. Sexual scripts: origins, influences and changes. Qual Sociol. 2003;26(4): 491–7.CrossRefGoogle Scholar
  48. Simon W, Gagnon JH. Sexual conduct: the social sources of human sexuality. Piscataway: Transaction Publishers; 2011.Google Scholar
  49. Taleporos G, McCabe MP. Physical disability and sexual esteem. Sex Disabil. 2001;19(2):131–48.CrossRefGoogle Scholar
  50. Taleporos G, McCabe MP. Body image and physical disability – personal perspectives. Soc Sci Med. 2002a;54(6):971–80.CrossRefGoogle Scholar
  51. Taleporos G, McCabe MP. The impact of sexual esteem, body esteem, and sexual satisfaction on psychological well-being in people with physical disability. Sex Disabil. 2002b;20(3):177–83.CrossRefGoogle Scholar
  52. Taleporos G, McCabe MP. Relationships, sexuality and adjustment among people with physical disability. Sex Relatsh Ther. 2003;18(1):25–43.CrossRefGoogle Scholar
  53. Van Manen M. Researching the experience of pedagogy. Educ Can. 2002;42(4):24–39.Google Scholar

Copyright information

© Springer Nature Singapore Pte Ltd. 2019

Authors and Affiliations

  1. 1.Western Sydney UniversitySydneyAustralia
  2. 2.University of SydneyLidcombeAustralia
  3. 3.Educational Psychology and Inclusive EducationUniversity of JohannesburgJohannesburgSouth Africa

Personalised recommendations