Relationships and Sex Education Outcomes for Students With Intellectual Disability: Protocol for the Development of a Core Outcome Set

Overview

Journal JMIR Res Protoc

Publisher JMIR Publications

Specialty General Medicine

Date 2022 Nov 7

PMID 36342756

Authors

Laura Paulauskaite

Vasiliki Totsika

Carol Rivas

Affiliations

Soon will be listed here.

Abstract

Background: People with intellectual disability are twice as likely to experience sexual abuse, unintended pregnancies, and sexually transmitted diseases as people in the general population. Despite this, very little is known about how to deliver relationships and sex education effectively to this vulnerable population, how to measure the impact of its delivery in schools, and what stakeholders perceive as important outcomes of this education.

Objective: To address these urgent issues, this study aims to develop a stakeholder consensus-based core outcome set of relationships and sex education for use in research and educational settings with students with intellectual disability.

Methods: The study will use a 2-stage mixed methods design. The first stage will involve a systematic review of relationships and sex education outcomes reported in the literature, followed by qualitative exploration with caregivers, teachers and school staff, policy makers, and researchers to investigate their perspectives of meaningful outcomes of this education. Students with intellectual disability will be enabled to take part to express their views on outcomes of importance to them. The second stage will use findings from stage 1 in a 2-round web-based Delphi study with caregivers, teachers and school staff, policy makers, and researchers to develop consensus on proposed outcomes for the evaluation of relationships and sex education with this population.

Results: As of September 2022, we have completed a systematic review and recruited 56 stakeholders (n=53, 95%, adults and n=3, 5%, students with intellectual disability) for the first stage of the study. We are still recruiting students with intellectual disability. Data analysis has not started yet. Recruitment for the second stage will commence in November 2022. We expect to complete the study by October 2023 and publish the results by the end of 2024.

Conclusions: The development of a core outcome set of relationships and sex education will provide a significant first step to assist the implementation, delivery, evaluation, and sustainability of relationships and sex education for students with intellectual disability. Key audiences will be teachers, researchers, policy makers, and decision makers.

Trial Registration: Core Outcome Measures in Effectiveness Trials 1787; https://www.comet-initiative.org/Studies/Details/1787.

International Registered Report Identifier (irrid): PRR1-10.2196/39921.

References

Buckley N, Glasson E, Chen W, Epstein A, Leonard H, Skoss R . Prevalence estimates of mental health problems in children and adolescents with intellectual disability: A systematic review and meta-analysis. Aust N Z J Psychiatry. 2020; 54(10):970-984. DOI: 10.1177/0004867420924101. View

Gokgoz C, Deliktas Demirci A, Kabukcuoglu K . Sexual behaviours and education in adolescents and young adults with Down syndrome: A grounded theory study of experiences and opinions of their mothers in Turkey. Res Dev Disabil. 2021; 112:103907. DOI: 10.1016/j.ridd.2021.103907. View

Gargon E, Gorst S, Matvienko-Sikar K, Williamson P . Choosing important health outcomes for comparative effectiveness research: 6th annual update to a systematic review of core outcome sets for research. PLoS One. 2021; 16(1):e0244878. PMC: 7802923. DOI: 10.1371/journal.pone.0244878. View

Jones L, Bellis M, Wood S, Hughes K, McCoy E, Eckley L . Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies. Lancet. 2012; 380(9845):899-907. DOI: 10.1016/S0140-6736(12)60692-8. View

Helleve A, Flisher A, Onya H, Mukoma W, Klepp K . South African teachers' reflections on the impact of culture on their teaching of sexuality and HIV/AIDS. Cult Health Sex. 2009; 11(2):189-204. DOI: 10.1080/13691050802562613. View

Rosas S, Kane M . Quality and rigor of the concept mapping methodology: a pooled study analysis. Eval Program Plann. 2012; 35(2):236-45. DOI: 10.1016/j.evalprogplan.2011.10.003. View

Barnard-Brak L, Schmidt M, Chesnut S, Wei T, Richman D . Predictors of access to sex education for children with intellectual disabilities in public schools. Intellect Dev Disabil. 2014; 52(2):85-97. DOI: 10.1352/1934-9556-52.2.85. View

Williamson P, Altman D, Bagley H, Barnes K, Blazeby J, Brookes S . The COMET Handbook: version 1.0. Trials. 2017; 18(Suppl 3):280. PMC: 5499094. DOI: 10.1186/s13063-017-1978-4. View

Brown M, McCann E, Truesdale M, Linden M, Marsh L . The Design, Content and Delivery of Relationship and Sexuality Education Programmes for People with Intellectual Disabilities: A Systematic Review of the International Evidence. Int J Environ Res Public Health. 2020; 17(20). PMC: 7589668. DOI: 10.3390/ijerph17207568. View

10.

Sherratt F, Bagley H, Stones S, Preston J, Hall N, Gorst S . Ensuring young voices are heard in core outcome set development: international workshops with 70 children and young people. Res Involv Engagem. 2020; 6:19. PMC: 7201753. DOI: 10.1186/s40900-020-00202-9. View

11.

Wissink I, van Vugt E, Moonen X, Stams G, Hendriks J . Sexual abuse involving children with an intellectual disability (ID): a narrative review. Res Dev Disabil. 2014; 36:20-35. DOI: 10.1016/j.ridd.2014.09.007. View

12.

Holloway K . Doing the E-Delphi: using online survey tools. Comput Inform Nurs. 2012; 30(7):347-50. DOI: 10.1097/NXN.0b013e31825e8923. View

13.

Menon P, Sivakami M . Exploring Parental Perceptions and Concerns About Sexuality and Reproductive Health of Their Child With Intellectual and Developmental Disability (IDD) in Mumbai. Front Sociol. 2021; 4:58. PMC: 8022999. DOI: 10.3389/fsoc.2019.00058. View

14.

Williamson P, Altman D, Blazeby J, Clarke M, Devane D, Gargon E . Developing core outcome sets for clinical trials: issues to consider. Trials. 2012; 13:132. PMC: 3472231. DOI: 10.1186/1745-6215-13-132. View

15.

Guyatt G, Oxman A, Kunz R, Atkins D, Brozek J, Vist G . GRADE guidelines: 2. Framing the question and deciding on important outcomes. J Clin Epidemiol. 2011; 64(4):395-400. DOI: 10.1016/j.jclinepi.2010.09.012. View

16.

Kirkham J, Davis K, Altman D, Blazeby J, Clarke M, Tunis S . Core Outcome Set-STAndards for Development: The COS-STAD recommendations. PLoS Med. 2017; 14(11):e1002447. PMC: 5689835. DOI: 10.1371/journal.pmed.1002447. View

17.

Schalock R, Luckasson R, Tasse M . An Overview of Intellectual Disability: Definition, Diagnosis, Classification, and Systems of Supports (12th ed.). Am J Intellect Dev Disabil. 2021; 126(6):439-442. DOI: 10.1352/1944-7558-126.6.439. View

18.

Oeseburg B, Dijkstra G, Groothoff J, Reijneveld S, Jansen D . Prevalence of chronic health conditions in children with intellectual disability: a systematic literature review. Intellect Dev Disabil. 2011; 49(2):59-85. DOI: 10.1352/1934-9556-49.2.59. View

19.

Tesfaye R, Courchesne V, Yusuf A, Savion-Lemieux T, Singh I, Shikako-Thomas K . Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities. Autism. 2019; 23(8):1882-1896. PMC: 6779014. DOI: 10.1177/1362361319831487. View

20.

Sankhla D, Theodore K . British Attitudes Towards Sexuality in Men and Women with Intellectual Disabilities: A Comparison Between White Westerners and South Asians. Sex Disabil. 2015; 33(4):429-445. PMC: 4643113. DOI: 10.1007/s11195-015-9423-7. View