Barriers and facilitators affecting the social activities of people with congenital physical and communication disabilities are well documented. However, little is known of their experiences of developing sexual and intimate relationships. This study conducted a systematic review of the literature to address this gap in knowledge. Ten online databases were searched for relevant papers between 1990 and 2014. In addition, hand searches of Augmentative and Alternative Communication Journal and the Sexuality and Disability Journal were conducted. Fifteen papers were identified and appraised. The thematic coding approach identified six principal themes. However, the content analysis revealed that the majority of the literature focused on the social needs of people with physical and communication disabilities. Despite evidence that people with disabilities are sexually active, there is little focus on the experiences of people with disabilities developing intimacy and expressing sexuality. The few references to sexuality in the relevant literature focused on protection from abuse, though some researchers called for improved counseling on sexuality and relationships, and improved access to sexual health services. Further research is required to focus on practical and theoretical outcomes to enhance social relationships and sexuality, and offer lovers who use AAC real advice in their search for intimacy.
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Butler, J.: Gender Trouble: Feminism and the Subversion of Identity. Routledge, London (2002)
McCabe, J., Holmes, D.: Nursing, sexual health and youth with disabilities: a critical ethnography. J. Adv. Nurs. 70(1), 77–86 (2014). doi:10.1111/jan.12167
Valvano, A.K., West, L.M., Wilson, C.K., Macapagal, K.R., Penwell-Waines, L.M., Waller, J.L., Stepleman, L.M.: Health professions students’ perceptions of sexuality in patients with physical disability. Sex. Disabil. 32(3), 413–427 (2014)
McCabe, M., Taleporos, G.: Sexual esteem, sexual satisfaction, and sexual behavior among people with physical disability. Arch. Sex. Behav. 32(4), 359–369 (2003). doi:10.1023/A:1024047100251
United Nations: Convention on the rights of persons with disabilities. http://www.un.org/disabilities/default.asp?id=259 (2013). Accessed 04 Mar 2014
Wiegerink, D., Roebroeck, M., Bender, J., Stam, H., Cohen-Kettenis, P.: Sexuality of young adults with cerebral palsy: experienced limitations and needs. Sex. Disabil. 29(2), 9 (2011). doi:10.1007/s11195-010-9180-6
Shikako-Thomas, K., Bogossian, A., Lach, L.M., Shevell, M., Majnemer, A.: Parents’ perspectives on the quality of life of adolescents with cerebral palsy: trajectory, choices and hope. Disabil. Rehabil. 35(25), 2113–2122 (2013). doi:10.3109/09638288.2013.770083
Vaughn, M., Silver, K., Murphy, S., Ashbaugh, R., Hoffman, A.: Women with disabilities discuss sexuality in San Francisco focus groups. Sex. Disabil. 33(1), 19–46 (2015). doi:10.1007/s11195-014-9389-x
Light, J., McNaughton, D.: Designing AAC research and intervention to improve outcomes for individuals with complex communication needs. Augment. Altern. Commun. 31(2), 85–96 (2015). doi:10.3109/07434618.2015.1036458
Collier, B., Mcghie-Richmond, D., Self, H.: Exploring communication assistants as an option for increasing communication access to communities for people who use augmentative communication. Augment. Altern. Commun. 26(1), 48–59 (2010). doi:10.3109/07434610903561498
Collier, B., McGhie-Richmond, D., Odette, F., Pyne, J.: Reducing the risk of sexual abuse for people who use augmentative and alternative communication. Augment. Altern. Commun. 22(1), 62–75 (2006). doi:10.1080/07434610500387490
Schlosser, R.W., Koul, R., Costello, J.: Asking well-built questions for evidence-based practice in augmentative and alternative communication. J. Commun. Disord. 40(3), 225–238 (2007). doi:10.1016/j.jcomdis.2006.06.008
Oudekerk, B.A., Allen, J.P., Hessel, E.T., Molloy, L.E.: The cascading development of autonomy and relatedness from adolescence to adulthood. Child Dev. 86(2), 472–485 (2015). doi:10.1111/cdev.12313
Simon, V.A., Aikins, J.W., Prinstein, M.J.: Romantic partner selection and socialization during early adolescence. Child Dev. 79(6), 1676–1692 (2008). doi:10.1111/j.1467-8624.2008.01218.x
Harden, A.: Mixed-methods systematic reviews: integrating quantitative and qualitative findings. In: Focus: A Publication of the National center for the Dissemination of Disability Research (NCDDR) Technical Brief (25) (2010)
Joanna Briggs Institute: Joanna Briggs Institute reviewers’ manual. The Joanna Briggs Institute. http://www.joannabriggs.org/assets/docs/sumari/ReviewersManual_Mixed-Methods-Review-Methods-2014-ch1.pdf (2014). Accessed 22 Mar 2016
Letts, L., Wilkins, S., Law, M., Stewart, D., Bosch, J., Westmorland, M.: Critical Review Form—Qualitative Studies (Version 2.0). McMaster University, Hamilton (2007)
Law, M., Stewart, D., Pollock, N., Letts, L., Bosch, J., Westmorland, M.: Critical Review Form—Quantitative Studies. McMaster University, Hamilton (2007)
Dixon-Woods, M., Agarwal, S., Young, B., Jones, D., Sutton, A.: Integrative Approaches to Qualitative and Quantitative Evidence. Health Development Agency, London (2004)
Moher, D., Liberati, A., Tezlaff, J., Altman, D.G.: Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. J. Clin. Epidemiol. 62(10), 7 (2009). doi:10.1016/j.jclinepi.2009.06.005
Viera, A.J., Garrett, J.M.: Understanding interobserver agreement: the kappa statistic. Fam. Med. 37(5), 360–363 (2005)
Anderson, K., Balandin, S., Clendon, S.: “He cares about me and I care about him”. Children’s experiences of friendship with peers who use AAC. Augment. Altern. Commun. 27(2), 77–90 (2011). doi:10.3109/07434618.2011.577449
Angelo, D., Kokoska, S., Jones, S.: Family perspective on augmentative and alternative communication: families of adolescents and young adults. Augment. Altern. Commun. 12(1), 13–22 (1996). doi:10.1080/07434619612331277438
Ballin, L., Balandin, S.: An exploration of loneliness: communication and the social networks of older people with cerebral palsy. J. Intellect. Dev. Disabil. 32(4), 315–327 (2007). doi:10.1080/13668250701689256
Cooper, L., Balandin, S., Trembath, D.: The loneliness experiences of young adults with cerebral palsy who use alternative and augmentative communication. Augment. Altern. Commun. 25(3), 154–164 (2009). doi:10.1080/07434610903036785
Dattilo, J., Estrella, G., Estrella, L.J., Light, J., McNaughton, D., Seabury, M.: “I have chosen to live life abundantly”: perceptions of leisure by adults who use augmentative and alternative communication. Augment. Altern. Commun. 24(1), 16–28 (2008). doi:10.1080/07434610701390558
Davis, E., Shelly, A., Waters, E., Mackinnon, A., Reddihough, D., Boyd, R., Graham, H.K.: Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents. Dev. Med. Child Neurol. 51(3), 193–199 (2009). doi:10.1111/j.1469-8749.2008.03194.x
Dew, A., Llewellyn, G., Balandin, S.: Exploring the later life relationship between adults with cerebral palsy and their non-disabled siblings. Disabil. Rehabil. 36(9), 756–764 (2014). doi:10.3109/09638288.2013.816786
Howland, C.A., Rintala, D.H.: Dating behaviors of women with physical disabilities. Sex. Disabil. 19(1), 41–70 (2001). doi:10.1023/A:1010768804747
Lilienfeld, M., Alant, E.: The social interaction of an adolescent who uses AAC: the evaluation of a peer-training program. Augment. Altern. Commun. 21(4), 278–294 (2005). doi:10.1080/07434610500103467
Murphy, K.P., Molnar, G.E., Lankasky, K.: Employment and social issues in adults with cerebral palsy. Arch. Phys. Med. Rehabil. 81(6), 807–811 (2000). doi:10.1016/S0003-9993(00)90115-1
Rintala, D.H., Howland, C.A., Nosek, M.A., Bennett, J.L., Young, M.E., Foley, C.C., Rossi, C.D., Chanpong, G.: Dating issues for women with physical disabilities. Sex. Disabil. 15(4), 219–242 (1997). doi:10.1023/A:1024717313923
Shuttleworth, R.P.: The pursuit of sexual intimacy for men with cerebral palsy. Doctoral Dissertation in Medical Anthropology, University of San Francisco and University of California, Berkeley. https://www.academia.edu/1017671/The_Pursuit_of_Sexual_Intimacy_for_Men_with_Cerebral_Palsy_PhD_dissertation_2000_ (2000). Accessed 12 Oct 2014
Shuttleworth, R.P.: The search for sexual intimacy for men with cerebral palsy. Sex. Disabil. 18(4), 263–282 (2000). doi:10.1023/A:1005646327321
Thirumanickam, A., Raghavendra, P., Olsson, C.: Participation and social networks of school-age children with complex communication needs: a descriptive study. Augment. Altern. Commun. 27(3), 195–204 (2011). doi:10.3109/07434618.2011.610818
Andersson, K., Bellon, M., Walker, R.: Parents’ experiences of their child’s return to school following acquired brain injury (ABI): a systematic review of qualitative studies. Brain Injury 30(7), 829–838 (2016). doi:10.3109/02699052.2016.1146963
Alwell, M., Cobb, B.: Social and communicative interventions and transition outcomes for youth with disabilities: a systematic review. Career Dev. Except. Individ. 32(2), 94–107 (2009). doi:10.1177/0885728809336657
The paper forms a part of the doctoral studies of the first author, under the primary supervision of the second author, and the secondary supervision of the third author. The authors extend their special thanks for the support of Raechel Damarell, Senior Liaison Librarian for Medicine, Nursing and Health Sciences of Flinders University for her expertise and time in the development of the search criteria. Thanks are also extended to Claire Hutchinson for her editorial and formatting assistance.
Conflict of interest
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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Sellwood, D., Raghavendra, P. & Jewell, P. Sexuality and Intimacy for People with Congenital Physical and Communication Disabilities: Barriers and Facilitators: A Systematic Review. Sex Disabil 35, 227–244 (2017). https://doi.org/10.1007/s11195-017-9474-z
- Communication disability
- Physical disability
- Augmentative and alternative communication
- Systematic review