Sexual Lives of Individuals with Mental Disability: A Consideration from Parents’ Perspectives

Year 2023, Issue: 58, 2577 - 2614, 27.12.2023

İrem Bülbül , Kasım Karataş

https://doi.org/10.53444/deubefd.1291527

Abstract

In this study, it was aimed to reveal the perspectives and experiences of parents on the sexual life of their children with mental disabilities. In this study, in which qualitative phenomenological research method was used, direct statements of parents who participated as participants were included. Individual semi-structured interviews were conducted with 15 parents. Parents’ experiences were analyzed under four themes. In the theme of "Perspective on sexual behavior: The situation is so dire!", statements in which parents put forward their children’s perspectives on sexual behavior were included. In the theme of “The topic unspoken: Sexuality…”, the sexual behaviors that parents observed in their children, the emergence of sexuality, and parental fears were examined. “Remedy for Sexual Expression: What do I do?”, ways of coping with the sexual behavior of individuals, deficiencies and needs of the parents are mentioned. “Social barriers in sexual life”, discriminatory and supportive life experiences of parents in society are included. As a result, parents saw their children’s sexuality as sudden, unexpected, problem, burden, injustice, need. They were in an effort to harmonize their children’s sexual behavior with the norms in the society. Lack of resources and professionals supporting individuals and parents about sexuality is the most obvious problem for parents. Parents define the reason for their children’s difficulties in sexuality as the perspective of the society. Rights-based psycho-education, health services and public awareness activities regarding the sexual life of individuals with mental disabilities and their families must be developed.

Keywords

Intellectual Disability, Sexuality, Discrimination, Parental Perspective

Zihinsel Yetersizliği Olan Bireylerin Cinsel Yaşamları: Ebeveynlerin Bakış Açısından Bir Değerlendirme

Abstract

Bu çalışmada ebeveynlerin zihinsel yetersizliği olan çocuklarının cinsel yaşamlarına bakış açılarını ve deneyimlerini ortaya koymak amaçlanmıştır. Nitel fenomenolojik araştırma yöntemi kullanılan bu araştırmada katılımcı olarak yer alan ebeveynlerin doğrudan anlatımlarına yer verilmiştir. 15 ebeveyn ile bireysel yarı yapılandırılmış görüşme yapılmıştır. Ebeveynlerin deneyimleri dört tema altında incelenmiştir. “Cinsel davranışa bakış açısı: Durum o kadar vahim ki!” temasında, ebeveynlerin çocuklarının cinsel davranışına karşı ortaya koydukları ifadelere yer verilmiştir. “Konuşulmayan konu: Cinsellik…”, temasında ebeveynlerin çocuklarında gözlemledikleri cinsel davranışlar, cinselliğin ortaya çıkışı ve ebeveynleri korkuları incelenmiştir. “Cinsel ifadeye çare arama: Ne yapacağım?”, bireylerin cinsel davranışları karşısında ebeveynlerin başa çıkma yollarından, ebeveynlere göre eksikliklerden ve ihtiyaçlardan bahsedilmiştir. “Cinsel yaşamdaki toplumsal bariyerler”, ebeveynlerin toplumdaki ayrımcı ve destekleyici yaşam deneyimlerine yer verilmiştir. Sonuç olarak ebeveynler zihinsel yetersizliği olan çocuklarının cinselliğini ani, beklenmedik, yük, haksızlık, ihtiyaç olarak görmekteydiler. Ebeveynler çocuklarının cinsel davranışlarını toplumdaki normlara uyumlu hale getirme çabası içindeydiler. Cinsellik hakkında zihinsel yetersizliği olan bireyleri ve ebeveynleri destekleyen kaynak, profesyonel yokluğu ebeveynler için en belirgin ihtiyaçtır. Ebeveynler, cinsellikte zihinsel yetersizliği olan çocuklarının yaşadıkları zorluğun nedenini toplumun bakış açısı olarak tanımlamaktadır. Zihinsel yetersizliği olan bireylerin ve ailelerinin cinsel hayatına yönelik hak temelli psiko-eğitim, sağlık hizmetleri ve toplumu bilinçlendirme çalışmaları geliştirilmelidir.

Keywords

Cinsellik, Ayrımcılık, ebeveyn bakışaçısı, zihinsel yetersizliği olan birey

References

• Abbott, D. & Howarth, J. (2007). Still off‐limits? Staff views on supporting gay, lesbian and bisexual people with intellectual disabilities to develop sexual and intimate relationships?. Journal of Applied Research in Intellectual Disabilities, 20(2), 116–126.
• American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing.
• Ariadni, D. K., Prabandari, Y. S. & Dw, S. (2017). Parents’ perception having children with intellectual disability providing sex education: A qualitative study in Yogyakarta. Indonesian Nursing Journal of Education and Clinic, 2(2), 164-169.
• Ballan, M. S. (2001). Parents as sexuality educators for their children with developmental disabilities. Sex Information and Education Council of the United States, 29(3), 14-19.
• Ballan, M. S. (2012). Parental perspective of communication about sexuality in families of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 676-684.
• Bartin, L., Gür, Ç. & Nuri, C. (2021). Examining the views of parents with special needs children regarding their children’s sex education (North Cyprus sample). Turkish International Journal of Special Education and Guidance & Counselling, 10(2), 125-140.
• Bilge, A., Çeber, E., Demirelöz, M. & Akmeşe, Z. (2013). Zihinsel engellilerin ebeveynlerine verilen cinsel sağlık ve üreme sağlığı eğitiminin zihinsel engelliler için etkinliğinin belirlenmesi. Türkiye Klinikleri, 33(3), 648-655.
• Birt, L., Scott, S., Cavers, D., Campbell, C. & Walter, F. (2016). Member checking: A tool to enhance trustworthiness or merely a nod to validation? Qualitative Health Research, 26(13) 1802–1811.
• Biswas, S., Tickle, A., Golijani-Moghaddam, N. & Almack, K. (2017). The transition into adulthood for children with a severe intellectual disability: Parents’ views. International Journal of Developmental Disabilities, 63(2), 99-109.
• Boyacıoğlu, N., Karaçam, Z., Özcan, N. & Sert, O. (2021). Parents’ attitute towards the sexuality of their adolescents with mental deficiency: A qualitative research. Journal of Psychiatric Nursing, 12(3), 216-226.
• Braun, V. & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589-597.
• Brown, M. & McCann, E. (2018). Sexuality issues and the voices of adults with intellectual disabilities: A systematic review of the literature. Research in Developmental Disabilities, 74, 124-138.
• Brown, R. D. & Pirtle, T. (2008). Beliefs of professional and family caregivers about the sexuality of individuals with intellectual disabilities: Examining beliefs using a q-methodology approach. Sex education, 8(1), 59-75.
• Byrne, G. (2018). Prevalence and psychological sequelae of sexual abuse among individuals with an intellectual disability: A review of the recent literature. Journal of Intellectual Disabilities, 22(3), 294–310.
• Candela, A. G. (2019). Exploring the function of member checking. The Qualitative Report, 24(3), 619-628.
• Carew, M. T., Braathen, S. H., Swatz, L., Hunt, X. & Rohleder, P. (2017). The sexual lives of people with disabilities within low and middle-income countries: A scoping study of studies published in English. Global Healty Action, 10(1), 1-7.
• Chapman, J. & Pitceathly, A. (1985). Sexuality and mentally handicapped: People: Issues of sex education, marriage, parenthood, and care staff attitudes. Australia and New Zealand Journal of Developmental Disabilities, 10(4), 227-235.
• Cheng, M. M. & Udry, J. R. (2003). How much do mentally disabled adolescents know about sex and birth control?. Adolescent and Family Health, 3, 28–38.
• Cinsel Eğitim Tedavi ve Araştırma Derneği [CEDAT], (2006). Cinsel yaşam ve sorunları. Cinsel Eğitim Tedavi ve Araştırma Derneği.
• Creswell, J. W. (2013). Qualitative inquiry research design (3rd ed.). Sage.
• Cuskelly, M. & Bryde, B. (2004). Attitudes towards the sexuality of adults with an intellectual disability: Parents, support staff, and a community sample. Journal of Intellectual and Developmental Disability, 29(3), 255–264.
• Cuskelly, M. & Gilmore, L. (2007). Attitudes to sexuality questionnaire (individuals with an intellectual disability): Scale development and community norms. Journal of Intellectual & Developmental Disability, 32(3), 214–221.
• Çelik, Ö. (2023). Zihinsel yetersizliği olan çocukların cinselliği hakkında annelerinin görüşleri. Turkish Studies, 12(18), 211-234.
• Darragh, J., Reynolds, L., Ellison, C. & Bellon, M. (2017). Let’s talk about sex: How people with intellectual disability in Australia engage with online social media and intimate relationships. Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 11(1), 1-17.
• Doyle, S. (2007). Member checking with older women: A framework for negotiating meaning. Health Care for Women International, 8, 888–908.
• Drummond, E. (2006). Attitudes towards a pilot study in Irland. Learning Disability Practice, 9(4). 28-34.
• Eastgate, G. (2011). Sex and intellectual disability: Dealing with sexual health issues. Australian Family Physician, 40(4), 188-191.
• Eastgate, G., Scheermeyer, E., Van Driel, M. & Lennox, N. (2012). Intellectual disability, sexuality and sexual abuse prevention: A study of family members and support workers. Australıan Famıly Physıcıan, 41(3), 135-139.
• Evans, D. S., McGuire, B. E., Healy, E. & Carley, S. N. (2009). Sexuality a personal relationship for people with an intellectual disability. Part II: Staff and family carer perspectives. Journal of Intellectual Disability Research, 53(11), 913-921.
• Eyres, R. M., Hunter, W. C., Happel-Parkins, A., Williamson, R. L. & Casey. L. B. (2022). Important conversations: exploring parental experiences in providing sexuality education for their children with intellectual disabilities. American Journal of Sexuality Education, 17(4), 490-509.
• Fitzgerald, C. & Withers, P. (2011). ‘I don’t know what a proper woman means’: What women with intellectual disabilities think about sex, sexuality and themselves. British Journal of Learning Disabilities, 41(1), 5-12.
• Fobat, L. & Henderson, J. (2005). Theoretical and practical reflections on sharing transcripts with participants. Qualitative Health Research, 15(8), 1114-1128.
• Frank, K. & Sandman, L. (2019). Supporting parents as sexuality educators for individuals with intellectual disability: The development of the home B.A.S.E. curriculum. Sexuality and Disability, 37, 329-337.
• Gil-Llario, M. D., Morell-Mengual, V., Fernandez-Garcia, O., Castro-Calvo, J. & Ballester-Arnal, R. (2020). Developmental and psychometric properties of an instrument for the assessment of sexual behaviour and knowledge of people with intellectual disability. Sexual Abuse, 32(7), 850-877.
• Goodwin, J., Swaab, L. & Campbell, L. E. (2020). “She’ll be able to live independently... As long as I’m around”: The “lived” experience of parenting a child with 22q11.2 deletion syndrome in the transition to adulthood. Journal Applied Research in Intellectual Disabilities, 33(3), 565–573.
• Gürol, A., Polat, S. & Oran, T. Y. (2014). Views of mothers having children with intellectual disability regarding sexual education: A qualitative study. Sexuality and Disability, 32(2), 123-133.
• Haynes, A. (2016). An investigation into parental attitudes about sexuality and children with intellectual disabilities. [Doctoral dissertation]. City University of Seattle.
• Hazar, Z. & Ayhan Bütün A. (2022). Ergenlik döneminde zihinsel engelli çocuğu olan annelerin deneyimlerinin incelnemesi. International Journal of Human Studies, 5(9), 216-238.
• Healy, E., McGuire, B. E., Evans, D. S. & Carley, S. N. (2009). Sexuality and personal relationships for people with an intellectual disability. Part I: Service-user perspectives. Journal of Intellectual Disability Research, 53(11), 905-912.
• Hole. R., Schnellert, L. & Cantle, G. (2022). Sex: “What is the big deal? Exploring individuals” with intellectual disabilities experiences with sex education. Qualitative Health Research, 32(3), 453–464.
• Hosseinkhanzadeh, A. A., Taher, M. & Esapoor, M. (2012). Attitudes to sexuality in individuals with mental retardation from perspectives of their parents and teachers. International Journal of Sociology and Anthropology, 4(4), 134-146.
• İşler, A., Beytut, D., Taş, F. & Conk, Z. (2009). A study on sexuality with the parents of adolescents with intellectual disability. Sexuality and Disability, 27, 229–237.
• Kahonde, C.K., McKenzie, J. & Wilson, N. J. (2019). Discourse of needs versus discourse of rights: family caregivers responding to the sexuality of young South African adults with intellectual disability. Culture, Health & Sexuality, 21(3), 278–292.
• Kamaludin, N.N., Muhamad, R., Mat Yudin, Z. & Zakaria, R. (2022). Barriers and concerns in providing sex education among children with intellectual disabilities: Experiences from Malay mothers. International Journal of Environmental Research and Public Health, 19(3), 1070.
• Karaca, S. N. & Çiçek, A. U. (2022). Zihinsel engelliliği olan ergenlerde cinsel davranışların değerlendirilmesi. Gaziosmanpaşa Üniversitesi Tıp Fakültesidergisi, 14(3), 166-180.
• Kempton, W. & Kahn, E. (1991). Sexuality and people with intellectual disabilities: A historical perspective. Sex and Disability, 9(2), 93-111.
• Kök, G. & Akyüz, A. (2015) Evaluation of effectiveness of parent health education about the sexual developments of adolescents with intellectual disabilities. Sexuality and Disability, 33, 157-174.
• Lafferty, A., McConkey, R. & Simpson, A. (2012). Reducing to the barriers to relationships and sexuality education for persons with intellectual disabilities. Journal of Intellectual Disabilities, 16(1), 29-43.
• Lam, A., Yau, M. K., Franklin, R. C. & Leggat, P. A. (2022). Voices from parents on the sexuality of their child with intellectual disabilities: A socioemotional perspective in a Chinese context. British Journal of Learning Disabilities, 51(1), 13-23.
• Manor-Binyamini, I. & Schreiber-Divon, M. (2019). Parental perceptions of the sexuality of adolescents with intellectual disabilities. Sexuality and Disability, 37(4), 599-612.
• McGuire, B. E. & Bayley, A. A. (2011). Relationships, sexuality and decision-making capacity in people with an intellectual disability. Current Opinion in Psychiatry, 24(5), 398-402.
• Meaney‐Tavares, R. & Gavidia‐Payne, S. (2012). Staff characteristics and attitudes towards the sexuality of people with intellectual disability. Journal Intellectual Developmental Disability, 37(3), 269–273.
• Menon, P. & Sivakami, M. (2019). Exploring parental perceptions and concerns about sexuality and reproductive health of their child with intellectual and developmental disability (IDD) in Mumbai. Frontiers in Sociology, 4(58), 1-13.
• Miles, M. B. & Huberman, A. M. (1994). Qualitative data analysis (2nd ed.). Sage.
• Murphy, N. A. & Elias E. R. (2006). Sexuality of children and adolescents with developmental disabilities. Pediatrics, 118(1), 398-403.
• National Information Center for Children and Youth with Disabilities (NICHCY). (1992). Sexuality education for children and youth with disabilities. NICHCY News Digest, 1(3), 1-28.
• Öncü, E., Aktaş, G., Köksoy- Vayısoğlu, S. & Karakuş, E. Zihinsel engelli ergenlerin cinsel gelişim özellikleri ve ailelerin yaşadığı güçlükler: tanımlayıcı çalışma. Mersin Üniversitesi Sağlık Bilimleri Dergisi, 12(3), 413-425.
• Paterson, L., McKenzie, K. & Lindsay, B. (2012). Stigma, social comparison and self‐esteem in adults with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 25(2), 166–176.
• Patton, M. Q. (2018). Nitel araştırma ve değerlendirme yöntemleri. (Çev. M. Bütün, S. B. Demir). PEGEM Akademi Yayıncılık.
• Pownall, J. D., Jahoda, A., Hastings, R. & Kerr, L. (2012). Sexual understanding and development of young people with intellectual disabilities: Mothers’ perspectives. American Journal on Intellectual and Developmental Disabilities, 116(3), 205–219.
• Pryde, R. & Jahoda, A. (2018). A qualitative study of mothers’ experiences of supporting the sexual development of their sons with autism and an accompanying intellectual disability. International Journal of Developmental Disabilities, 64(3), 166-174.
• Rook-Ellis, D., Jones, B., Sulinski, E., Howorth, S. & Achey, N. (2000). The effectiveness of a brief sexuality education intervention for parents of children with intellectual and developmental disabilities. American Journal of Sexuality Education, 15(1), 1-21.
• Rottenberg, R. C. (2012, 18 July). Caught inside a paradox: How cultural representations perpetuate disability stigma. http://www.disabilityandrepresentation.com/caught-inside-a-paradox-how-cultural-representations-perpetuate-disability-stigma/
• Rushbrooke, E., Murray, C. D. & Townsend, S. (2014). What difficulties are experienced by caregivers in relation to the sexuality of people with intellectual disabilities? A qualitative meta-synthesis. Research in Developmental Disabilities, 35(4), 871-886.
• Saini, R. & Nazli, W. A. (2021). Awareness among parents of individuals with intellectual disability about sexual healthy education. Industrial Psychiatry Journal, 30(2), 224-229.
• Sarı, H. & Pürsün, T. (2022). Attitudes of Turkish parents toward sex education of their ıntellectual disability children. Makara Journal Health Research, 26(1), 36-43.
• Schaafsma, D., Kok, G., Stoffelen, J. M. T. & Curfs, L. M. G. (2017). People with intellectual disabilities talk about sexuality: Implications for the development of sex education. Sexual Disability, 35(1), 21-38.
• Shakespeare, T. (2000). Disabled sexuality: Toward rights and recognition. Sexuality and Disability, 18(3),159–166.
• Stahl, N. A. & King, J. R. (2020). Expanding approaches for research: Understanding and using trustworthiness in qualitative research. Journal of Development Education, 44(1), 26-28.
• Stein, S., Kohut, T. & Dillenburger, K. (2017). The importance of sexuality education for children with and without intellectual disabilities: What parents think. Sexuality and Disability, 36(2), 141-148.
• Tamas, D., Jovanovic, N. B., Rajic, M., Ignjatovic, V. B. & Prkosovacki, B. P. (2019). Professionals, parents and the general public: Attitudes towards the sexuality of persons with intellectual disability. Sexuality and Disability, 37, 245-258.
• Tong, A., Sainsbury, P. & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19, 349–357.
• Walker, J. L. (2001). A qualitative study of parents’ experiences of providing sex education for their children: The implications for health education. Health Education Journal, 60(2), 132–146.