Exploring the perspectives of young adults with developmental disabilities about sexuality and sexual health

Journal article


Coulter, Daina, Lynch, Claire and Joosten, Annette V.. (2023). Exploring the perspectives of young adults with developmental disabilities about sexuality and sexual health. Australian Occupational Therapy Journal. 70, p. 380–391. https://doi.org/10.1111/1440-1630.12862
AuthorsCoulter, Daina, Lynch, Claire and Joosten, Annette V.
Abstract

Background
Sexuality is important in everyday lives; it contributes to a sense of self. Everyone has a right to access sexual experiences, form relationships, and obtain sexual health education. There is limited literature from the perspective of people with developmental disabilities about their sexuality and particularly how, or if, societal attitudes influence their sexuality and their opinions about sexual health education. The aim of this study was to explore the experiences of young adults with developmental disabilities about their sexuality, their perceptions about how their sexuality was viewed by the community, and about the sexual education that is required and how it should be delivered.

Method
A qualitative interpretative phenomenological approach using a purposive sample was used to explore the perspectives of young adults, aged between 18 and 32 years old with developmental disabilities, to explore their perspectives on their sexuality, societal attitudes, and access to sexual health education. Seven semi-structured interviews were conducted and analysed using an interpretative phenomenological approach.

Results
Five main themes were developed from the data: (1) sexuality is multidimensional and important, (2) the challenges and fear of expressing sexuality, (3) societal views need to change, (4) close support enables sexuality, and (5) sexual health education needs to be individualised.

Conclusion
Participants suggested that sexuality was important to them, and they had the same expectations about sexuality and relationships as many young adults. However, their autonomy and self-determination to set sexuality goals were constrained by societal attitudes. Supportive family and friends enabled opportunities, but they believed the knowledge and attitudes about disability, and about disability and sexuality, of community members, service providers, funders, and educators needed to change to enable increased opportunity to express their sexuality. Participants reported a need for individualised sexual health education provided by professionals with expertise.

Keywordsdevelopmental; disabilities; education; intellectual; occupational therapy; sexual health; sexuality
Year2023
JournalAustralian Occupational Therapy Journal
Journal citation70, p. 380–391
PublisherJohn Wiley & Sons Australia, Ltd
ISSN0045-0766
Digital Object Identifier (DOI)https://doi.org/10.1111/1440-1630.12862
Scopus EID2-s2.0-85147996407
Web address (URL)https://onlinelibrary.wiley.com/doi/10.1111/1440-1630.12862
Open accessOpen access
Research or scholarlyResearch
Page range380–391
Publisher's version
License
File Access Level
Open
Output statusPublished
Publication dates
Online13 Feb 2023
Publication process dates
Accepted15 Jan 2023
Deposited26 May 2023
Additional information

© 2023 The Authors.Australian Occupational Therapy Journalpublished by John Wiley & Sons Australia, Ltd on behalf of Occupational Therapy Australia.

This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, providedthe original work is properly cited.

Permalink -

https://acuresearchbank.acu.edu.au/item/8z0zz/exploring-the-perspectives-of-young-adults-with-developmental-disabilities-about-sexuality-and-sexual-health

Download files


Publisher's version
Coulter_2023_Exploring_the_perspectives_of_young_adults.pdf
License: CC BY 4.0
File access level: Open

  • 92
    total views
  • 33
    total downloads
  • 2
    views this month
  • 3
    downloads this month
These values are for the period from 19th October 2020, when this repository was created.

Export as

Related outputs

Sexuality and ageing : A mixed methods explorative study of older adult’s experiences, attitudes, and support needs
Portellos, Amelia, Lynch, Claire and Joosten, Annette. (2023). Sexuality and ageing : A mixed methods explorative study of older adult’s experiences, attitudes, and support needs. British Journal of Occupational Therapy. 86(7), pp. 515-526. https://doi.org/10.1177/03080226231164277
Closing the gap between theory and practice : Conceptualisation of a school-based intervention to improve the school participation of primary school students on the autism spectrum and their typically developing peers
Hodges, Amy, Cordier, Reinie, Joosten, Annette and Bourke-Taylor, Helen. (2022). Closing the gap between theory and practice : Conceptualisation of a school-based intervention to improve the school participation of primary school students on the autism spectrum and their typically developing peers. Journal of Autism and Developmental Disorders. 52, pp. 3230-3245. https://doi.org/10.1007/s10803-021-05362-5
Evaluating the feasibility, fidelity, and preliminary effectiveness of a school-based intervention to improve the school participation and feelings of connectedness of elementary school students on the autism spectrum
Hodges, Amy, Cordier, Reinie, Joosten, Annette, Bourke-Taylor, Helen and Chen, Yu-Wei. (2022). Evaluating the feasibility, fidelity, and preliminary effectiveness of a school-based intervention to improve the school participation and feelings of connectedness of elementary school students on the autism spectrum. PLoS ONE. 17(6), p. Article e0269098. https://doi.org/10.1371/journal.pone.0269098
Exploring the implementation of the restraint and seclusion school policy with students with disability in Australian schools
Sexton, Georgia, Brown, Cherylee, Joosten, Annette and Hayward, Brent. (2022). Exploring the implementation of the restraint and seclusion school policy with students with disability in Australian schools. International Journal of Inclusive Education. pp. 1-19. https://doi.org/10.1080/13603116.2022.2150789
Experience of recently graduated occupational therapists in addressing sexuality with their clients
Spaseska, Claudia, Lynch, Claire, Joosten, Annette and Areskoug Josefsson, Kristina. (2022). Experience of recently graduated occupational therapists in addressing sexuality with their clients. Sexuality and Disability. 40, pp. 769-783. https://doi.org/10.1007/s11195-022-09762-y
Addressing sexuality : The comfort and preparedness of occupational therapy students
Lynch, Claire and Joosten, Annette V.. (2022). Addressing sexuality : The comfort and preparedness of occupational therapy students. Journal of Occupational Therapy Education. 6(1), pp. 1-16. https://doi.org/10.26681/jote.2022.060107
Occupational therapy practice contexts
Joosten, Annette, Darzins, Susan, Pépin, Geneviève, Roche, Natalie, Cahill, Liana and Harrington, Rosamund. (2021). Occupational therapy practice contexts. In In Brown, Ted, Bourke-Taylor, Helen M., Isbel, Stephen, Cordier, Reinie and Gustafsson, Louise (Ed.). Occupational therapy in Australia : Professional and practice issues pp. 305-323 Routledge.
Expert consensus on the development of a school-based intervention to improve the school participation and connectedness of elementary students on the autism spectrum : A delphi study
Hodges, Amy, Cordier, Reinie, Joosten, Annette and Bourke-Taylor, Helen. (2021). Expert consensus on the development of a school-based intervention to improve the school participation and connectedness of elementary students on the autism spectrum : A delphi study. Focus on Autism and Other Developmental Disabilities. 37(1), pp. 13-23. https://doi.org/10.1177/10883576211030483
Can we play together? A closer look at the peers of a peer-mediated intervention to improve play in children with autism spectrum disorder
Kent, Cally, Cordier, Reinie, Joosten, Annette, Wilkes-Gillan, Sarah and Bundy, Anita. (2021). Can we play together? A closer look at the peers of a peer-mediated intervention to improve play in children with autism spectrum disorder. Journal of Autism and Developmental Disorders. 50(8), pp. 2860-2873. https://doi.org/10.1007/s10803-020-04387-6
Can I learn to play? Randomized control trial to assess effectiveness of a peer-mediated intervention to improve play in children with autism spectrum disorder
Kent, Cally, Cordier, Reinie, Joosten, Annette, Wilkes-Gillan, Sarah and Bundy, Anita. (2021). Can I learn to play? Randomized control trial to assess effectiveness of a peer-mediated intervention to improve play in children with autism spectrum disorder. Journal of Autism and Developmental Disorders. 51, pp. 1823-1838. https://doi.org/10.1007/s10803-020-04671-5
Scoping review on noticing concerns in child development : A missing piece in the early intervention puzzle
Cuomo, Belinda, Joosten, Annette and Vaz, Sharmila. (2021). Scoping review on noticing concerns in child development : A missing piece in the early intervention puzzle. Disability and Rehabilitation. 43(18), pp. 2663-2672. https://doi.org/10.1080/09638288.2019.1707296
Mind the gap : Comparing perspectives of service providers to the needs of people with dementia living in the community
Morrisby, Claire, Ciccarelli, Marina and Joosten, Annette. (2020). Mind the gap : Comparing perspectives of service providers to the needs of people with dementia living in the community. Dementia. 20(4), pp. 1425-1441. https://doi.org/10.1177/1471301220947837
A systematic review and meta-analysis of interventions to improve play skills in children with autism spectrum disorder
Kent, Cally, Cordier, Reinie, Joosten, Annette, Wilkes-Gillan, Sarah, Bundy, Anita and Speyer, Renée. (2020). A systematic review and meta-analysis of interventions to improve play skills in children with autism spectrum disorder. Review Journal of Autism and Developmental Disorders. 7(1), pp. 91-118. https://doi.org/10.1007/s40489-019-00181-y
Can I join in? Multiple case study investigation of play performance generalisation for children with autism spectrum disorder from dyad to triad
Kent, Cally, Cordier, Reinie, Joosten, Annette, Wilkes-Gillan, Sarah and Bundy, Anita. (2020). Can I join in? Multiple case study investigation of play performance generalisation for children with autism spectrum disorder from dyad to triad. Australian Occupational Therapy Journal. 67(3), pp. 199 - 209. https://doi.org/10.1111/1440-1630.12635
School participation: The shared perspectives of parents and educators of primary school students on the autism spectrum
Hodges, Amy, Joosten, Annette, Bourke-Taylor, Helen and Cordier, Reinie. (2020). School participation: The shared perspectives of parents and educators of primary school students on the autism spectrum. Research in Developmental Disabilities. 97, pp. 1 - 12. https://doi.org/10.1016/j.ridd.2019.103550
Peer's pragmatic language outcomes following a peer-mediated intervention for children with autism: A randomised controlled trial
Parsons, Lauren, Cordier, Reinie, Munro, Natalie and Joosten, Annette. (2020). Peer's pragmatic language outcomes following a peer-mediated intervention for children with autism: A randomised controlled trial. Research in Developmental Disabilities. 99, p. Article 103591. https://doi.org/10.1016/j.ridd.2020.103591
The feasibility and appropriateness of a peer-to-peer, play-based intervention for improving pragmatic language in children with autism spectrum disorder
Lauren Parsons, Reinie Cordier, Natalie Munro and Annette Joosten. (2019). The feasibility and appropriateness of a peer-to-peer, play-based intervention for improving pragmatic language in children with autism spectrum disorder. International Journal of Speech-Language Pathology. 21(4), pp. 412-424. https://doi.org/10.1080/17549507.2018.1492630
A randomized controlled trial of a play-based, peer-mediated pragmatic language intervention for children with autism
Lauren Parsons, Reinie Cordier, Natalie Munro and Annette Joosten. (2019). A randomized controlled trial of a play-based, peer-mediated pragmatic language intervention for children with autism. Frontiers in Psychology. 10(1960), pp. 1-15. https://doi.org/10.3389/fpsyg.2019.01960
Needs of people with dementia and their spousal carers: A study of those living in the community
Morrisby, Claire, Joosten, Annette and Ciccarelli, Marina. (2019). Needs of people with dementia and their spousal carers: A study of those living in the community. Australasian Journal on Ageing. 38(2), pp. 43 - 49. https://doi.org/10.1111/ajag.12609
The impact of carer status on participation in healthy activity and self-reported health among Australian women over 50 years
Farrugia, Teagan Jade, Hewitt, Alana, Bourke-Taylor, Helen and Joosten, Annette V.. (2019). The impact of carer status on participation in healthy activity and self-reported health among Australian women over 50 years. Australian Occupational Therapy Journal. 66(1), pp. 23 - 32. https://doi.org/10.1111/1440-1630.12491
Preparing children with autism for transition to mainstream school and perspectives on supporting positive school experiences
Larcombe, Tegan J., Joosten, Annette V., Cordier, Reinie and Vaz, Sharmila. (2019). Preparing children with autism for transition to mainstream school and perspectives on supporting positive school experiences. Journal of Autism and Developmental Disorders. 49, pp. 3073 - 3088. https://doi.org/10.1007/s10803-019-04022-z
Applying Item Response Theory (IRT) modeling to an observational measure of childhood pragmatics: The Pragmatics Observational Measure-2
Cordier, Reinie, Munro, Natalie, Wilkes-Gillan, Sarah, Speyer, Renee, Parsons, Lauren and Joosten, Annette. (2019). Applying Item Response Theory (IRT) modeling to an observational measure of childhood pragmatics: The Pragmatics Observational Measure-2. Frontiers in Psychology. 10(408), pp. 1 - 17. https://doi.org/10.3389/fpsyg.2019.00408
Applying an occupational lens to thinking about and addressing sexuality
Lynch, Claire and Fortune, Tracy. (2019). Applying an occupational lens to thinking about and addressing sexuality. Sexuality and Disability. 37, pp. 145 - 159. https://doi.org/10.1007/s11195-019-09566-7
Factor structure of the social communication questionnaire in preschool aged autistic children
Grove, Rachel, Paynter, Jessica, Joosten, Annette, Vivanti, Giacomo, Dissanayake, Cheryl and Eapen, Valsamma. (2019). Factor structure of the social communication questionnaire in preschool aged autistic children. Journal of Child and Family Studies. 28, pp. 3385 - 3391. https://doi.org/10.1007/s10826-019-01519-0
A play-based, peer-mediated pragmatic language intervention for school-aged children on the autism spectrum: Predicting who benefits most
Parsons, Lauren, Cordier, Reinie, Munro, Natalie and Joosten, Annette. (2019). A play-based, peer-mediated pragmatic language intervention for school-aged children on the autism spectrum: Predicting who benefits most. Journal of Autism and Developmental Disorders. 49, pp. 4219 - 4231. https://doi.org/10.1007/s10803-019-04137-3
Do services meet the needs of people with dementia and carers living in the community? A scoping review of the international literature
Morrisby, Claire, Joosten, Annette and Ciccarelli, Marina. (2018). Do services meet the needs of people with dementia and carers living in the community? A scoping review of the international literature. International Psychogeriatrics. 30(1), pp. 5 - 14. https://doi.org/10.1017/S1041610217001491
Intergenerational mentoring at Men's Sheds: A feasibility study
Wilson, Nathan J., Cordier, Reinie, Ciccarelli, Marina, MacCallum, Judith, Milbourn, Benjamin, Vaz, Sharmila, Joosten, Annette, Buchanan, Angus, Mcauliffe, Tomomi and Stancliffe, Roger J.. (2018). Intergenerational mentoring at Men's Sheds: A feasibility study. Journal of Applied Research in Intellectual Disabilities. 31(1), pp. 105 - 117. https://doi.org/10.1111/jar.12338
Assessing motor skills to inform a fetal alcohol spectrum disorder diagnosis focusing on persons older than 12 years: A systematic review of the literature
Safe, Bernadette, Joosten, Annette and Giglia, Roslyn. (2018). Assessing motor skills to inform a fetal alcohol spectrum disorder diagnosis focusing on persons older than 12 years: A systematic review of the literature. Canadian Journal of Clinical Pharmacology. 25(1), pp. 25 - 38. https://doi.org/10.22374/1710-6222.25.1.3
Factors associated with stress in families of children with autism spectrum disorder
Sim, Angela, Vaz, Sharmila, Cordier, Reinie, Joosten, Annette, Parsons, Dave, Smith, Cally and Falkmer, Torbjörn. (2018). Factors associated with stress in families of children with autism spectrum disorder. Developmental Neurorehabilitation. 21(3), pp. 155 - 165. https://doi.org/10.1080/17518423.2017.1326185
iPad applications that required a range of motor skills promoted motor coordination in children commencing primary school
Axford, Caitlin, Joosten, Annette V. and Harris, Courtenay. (2018). iPad applications that required a range of motor skills promoted motor coordination in children commencing primary school. Australian Occupational Therapy Journal. 65(2), pp. 146 - 155. https://doi.org/10.1111/1440-1630.12450
Peer-mediated intervention to improve play skills in children with autism spectrum disorder: A feasibility study
Kent, Cally, Cordier, Reinie, Joosten, Annette, Wilkes-Gillan, Sarah and Bundy, Anita. (2018). Peer-mediated intervention to improve play skills in children with autism spectrum disorder: A feasibility study. Australian Occupational Therapy Journal. 65(3), pp. 176 - 186. https://doi.org/10.1111/1440-1630.12459
Using Rasch Analysis to evaluate the reliability and validity of the Swallowing Quality of Life Questionnaire: An Item Response Theory approach
Cordier, Reinie, Speyer, Renee, Schindler, Antonio, Michou, Emilia, Heijnen, Bas Joris, Baijens, Laura, Karaduman, Ayse, Swan, Katina, Clavé, Pere and Joosten, Annette Veronica. (2018). Using Rasch Analysis to evaluate the reliability and validity of the Swallowing Quality of Life Questionnaire: An Item Response Theory approach. Dysphagia. 33, pp. 441 - 456. https://doi.org/10.1007/s00455-017-9873-4
Evaluating the psychometric quality of school connectedness measures: A systematic review
Hodges, Amy, Cordier, Reinie, Joosten, Annette, Bourke-Taylor, Helen and Speyer, Renee. (2018). Evaluating the psychometric quality of school connectedness measures: A systematic review. PLoS ONE. 13(9), pp. 1 - 27. https://doi.org/10.1371/journal.pone.0203373
A systematic review of pragmatic language interventions for children with autism spectrum disorder
Parsons, Lauren, Cordier, Reinie, Munro, Natalie, Joosten, Annette and Speyer, Renee. (2017). A systematic review of pragmatic language interventions for children with autism spectrum disorder. PLoS ONE. 12(4), pp. 1 - 37. https://doi.org/10.1371/journal.pone.0172242
Utilisation of evidence-based practices by ASD early intervention service providers
Paynter, Jessica M., Ferguson, Sarah, Fordyce, Kathryn, Joosten, Annette, Paku, Sofia, Stephens, Miranda, Trembath, David and Keen, Deb. (2017). Utilisation of evidence-based practices by ASD early intervention service providers. Autism. 21(2), pp. 167 - 180. https://doi.org/10.1177/1362361316633032
Gaze and visual search strategies of children with Asperger syndrome/high functioning autism viewing a magic trick
Joosten, Annette, Girdler, Sonya, Albrecht, Matthew A., Horlin, Chiara, Falkmer, Marita, Leung, Denise, Ordqvist, Anna, Fleischer, Håkan and Falkmer, Torbjorn. (2016). Gaze and visual search strategies of children with Asperger syndrome/high functioning autism viewing a magic trick. Developmental Neurorehabilitation. 19(2), pp. 95 - 102. https://doi.org/10.3109/17518423.2014.913081
Contemporary occupational therapy: Our occupational therapy models are essential to occupation centred practice
Joosten, Annette. (2015). Contemporary occupational therapy: Our occupational therapy models are essential to occupation centred practice. Australian Occupational Therapy Journal. 62(3), pp. 219 - 222. https://doi.org/10.1111/1440-1630.12186
Parents' Perspectives on Inclusive Schools for Children with Autism Spectrum Conditions
Falkmer, Marita, Anderson, Katie, Joosten, Annette and Falkmer, Torbjörn. (2015). Parents' Perspectives on Inclusive Schools for Children with Autism Spectrum Conditions. International Journal of Disability, Development and Education. 62(1), pp. 1 - 23. https://doi.org/10.1080/1034912X.2014.984589
Management strategies of mothers of school-age children with autism: implications for practice
Joosten, Annette and Safe, Anneleise P.. (2014). Management strategies of mothers of school-age children with autism: implications for practice. Australian Occupational Therapy Journal. 61(4), pp. 249 - 258. https://doi.org/10.1111/1440-1630.12116
Visual search strategies during facial recognition in children with ASD
Albrecht, Matthew A., Foster, Joanne, Joosten, Annette, Falkmer, Marita, Tang, Julia, Leung, Denise, Ordqvist, Anna and Falkmer, Torbjorn. (2014). Visual search strategies during facial recognition in children with ASD. Research in Autism Spectrum Disorders. 8(5), pp. 559 - 569. https://doi.org/10.1016/j.rasd.2014.01.014
Does video training increase adult and child joint attention and improve child outcomes? Two individual case studies in children with autism spectrum disorder
Benson, Rhianna L. and Joosten, Annette V.. (2014). Does video training increase adult and child joint attention and improve child outcomes? Two individual case studies in children with autism spectrum disorder. Journal of Intellectual and Developmental Disability. 39(4), pp. 301 - 314. https://doi.org/10.3109/13668250.2014.940861
Investigating the experiences in a school-based occupational therapy program to inform community-based paediatric occupational therapy practice
Rens, Lezahn and Joosten, Annette. (2014). Investigating the experiences in a school-based occupational therapy program to inform community-based paediatric occupational therapy practice. Australian Occupational Therapy Journal. 61(3), pp. 148 - 158. https://doi.org/10.1111/1440-1630.12093
The experiences of mothers of children with autism: Managing multiple roles
Safe, Anneleise P., Joosten, Annette V. and Molineux, Matthew. (2012). The experiences of mothers of children with autism: Managing multiple roles. Journal of Intellectual and Developmental Disability. 37(4), pp. 294 - 302. https://doi.org/10.3109/13668250.2012.736614
The motivation of stereotypic and repetitive Behavior: Examination of construct validity of the Motivation Assessment Scale.
Joosten, Annette and Bundy, Anita. (2008). The motivation of stereotypic and repetitive Behavior: Examination of construct validity of the Motivation Assessment Scale. Journal of Autism and Developmental Disorders. 38(7), pp. 1341 - 1348. https://doi.org/10.1007/s10803-007-0523-9