Sexual Health Literacy Among Adults With Intellectual Disabilities: A Scoping Review

ABSTRACT

Background

Although sexual health literacy is recognised as critical to sexual health and well‐being, little is known about how people with intellectual disabilities acquire or use sexual health literacy skills. This scoping review examined research to explore what is known about sexual health literacy among adults with intellectual disability.

Method

We used Arksey and O′Malley's scoping framework to guide our review. We searched five electronic databases and reference lists of full‐text articles. Inclusion criteria included (i) original research in peer reviewed journals; (ii) published in English; (iii) addressed perspectives or experiences of people with intellectual disabilities regarding sexual health literacy or related topics. Findings were reported according to the Preferred Reporting Items for Systematic Reviews and Meta‐analyses extension for scoping reviews (PRISMA‐Scr). All text labelled ‘results’, ‘findings’ or ‘discussion’ was subjected to interpretive content analysis.

Results

The search strategy identified 5447 records, 102 met all eligibility criteria and were included for review. A conceptual framework to understand factors shaping sexual health literacy was developed. In this framework, sexual health literacy is underpinned by two fundamental pillars: sexual knowledge and sexual autonomy. The availability of sexual knowledge and sexual autonomy is threatened by several factors in the social environment: presumed sexual vulnerability and sexual incompetence, and expectations of heteronormativity and asexuality. Combined these factors reduce opportunities for acquisition of sexual knowledge and enactment of sexual autonomy and ultimately appear to limit sexual literacy among people with intellectual disabilities.

Conclusion

Sexual health literacy is critical for people with intellectual disabilities to enjoy full sexual citizenship. Despite this limited attention has been paid to supporting people with intellectual disabilities to acquire and use sexual health literacy skills. Comprehensive education programs are needed to address this gap and ensure the rights of people with intellectual disabilities to engage in safe, pleasurable sexual experiences and enjoy good sexual health are upheld.

1. Introduction

Sexual health is a state of physical, emotional, mental and social well‐being in relation to sexuality. Good sexual health requires appropriate sexual health literacy, the ability to obtain sexual knowledge and use it to make personal decisions about one's own sexual behaviour (Graf and Patrick 2015). Sexual health literacy is therefore dependent on (i) access to comprehensive, high‐quality information about sex and sexuality; (ii) knowledge about individual risk and vulnerability to adverse consequences of unprotected sexual activity; (iii) ability to access appropriate and timely sexual health care and (iv) an environment that recognises the right to sexual freedom and promotes sexual health (World Health Organisation 2023).

Sexual health literacy is important for all people regardless of the presence of illness or disability (World Health Organisation 2015). Failure to develop sexual health literacy is associated with sexual dysfunction and sexual dissatisfaction (Schnitzler et al. 2023) as well as contributing to poorer overall health and well‐being (World Health Organisation 2010). Despite the importance of sexual health literacy, limited attention has been paid to how it is acquired or used, particularly among people with intellectual disabilities (Colarossi et al. 2023), who Schalock, Luckasson and Tasse (2021) define as people who experience “significant limitations both in intellectual functioning and adaptive behaviour” (p.3). These difficulties in both functioning and behaviour are intricately related to the acquisition and execution of sexual health literacy, making this lack of attention even more potentially harmful.

This lack of attention to the acquisition and use of sexual health literacy among people with intellectual disabilities in the literature likely reflects social norms which confine sexuality and sexual expression to healthy, non‐disabled persons (Pebdani and Tashjian 2022), leading to lack of access to sex education, sexual and reproductive health services, and accessible sexual and reproductive health resources for people with intellectual disability (Carter et al. 2022). Failing to adequately support people with intellectual disabilities to acquire sexual health literacy places them at increased risk for sexually transmitted infection (Parekh, Gimm, and Kitsantas 2023; Woodhead and Hibberd 2024) and sexual abuse (Tomsa et al. 2021), in addition to the broader impacts of sexual dysfunction and dissatisfaction and poorer health and well‐being (Schnitzler et al. 2023; World Health Organisation 2010). This also contributes to failure to uphold Articles 23 (right to home and family) and 25 (right to health) of the Convention on the Rights of Persons with Disabilities (2006) by constricting access to parenthood and to accessible sexual and reproductive health, respectively.

Some attempts have been made to address this gap in our understanding of sexual health literacy among people with intellectual disabilities (Tepper 2000). Recent reviews suggest that sexual education for people with intellectual disabilities can improve outcomes relating to sexual knowledge and safe sexual behaviour (Schmidt, Brown, and Darragh 2020; Hui 2023). However, most of the studies included in Schmidt, Brown, and Darragh (2020) review recruited participants with autism spectrum disorder rather than intellectual disability. While there are likely similarities between the sexual health literacy needs of people with autism spectrum disorder and those who live with intellectual disability it is likely that programs designed for people with autism spectrum disorder will differ to those designed for people with intellectual disabilities. Hui (2023) focused on educational interventions to address sexual knowledge and sexual behaviours among adolescents with intellectual disabilities; however, this review did not incorporate the views or experiences of people with intellectual disabilities. Furthermore, it was not clear how these education programs contributed to acquisition of higher‐level sexual health literacy skills which move beyond the knowledge acquisition stage to include interactive and critical sexual health decisions—the combination of which are necessary for sexual health literacy. Such higher order health literacy has been identified as leading to greater autonomy and personal empowerment (Nutbeam 2000). Given the connection between a lack of sexual health literacy and poor health and well‐being, sexual dysfunction and dissatisfaction, and dangerously—sexually transmitted infections and sexual abuse, it is essential that the field recognise the intersection of knowledge and behaviour and seeks to improve sexual health literacy for people with intellectual disability.

Existing reviews have not always included the perspective of people with intellectual disabilities (Borawska‐Charko, Rohleder, and Finlay 2017; Hui 2023; Schmidt, Brown, and Darragh 2020). To ensure future policy and practice in this area is informed by the needs of people with intellectual disabilities, a comprehensive understanding of current knowledge relating to sexual health literacy, based specifically on the perspective of people with intellectual disabilities is needed. Including the voices and experiences of people with intellectual disabilities is particularly important as historically this group have frequently been excluded from issues relating to sexuality. This study seeks to address these knowledge gap by answering the following question: What is known about how people with intellectual disabilities understand and experience sexual health literacy?

2. Methods

A scoping review, informed by Arksey and O'Malley's (2005)) methodological framework, along with Johanna Briggs guidelines (Peters et al. 2022) was well‐suited to the study aims and allowed us to source the perspectives and experiences of people with intellectual disabilities across a wide body of literature. We used interpretive content analysis (Drisko et al. 2015) to enable us to summarise a large body of literature and to make inferences about how sexual health literacy has been experienced by people with intellectual disabilities based on both the manifest and latent content of previously conducted research. The review protocol was prospectively published (Chong, McGrath, and Pebdani 2022). A three‐step search strategy (Peters et al. 2022) was developed with support from an academic liaison librarian. During step 1 a preliminary search was conducted in PubMed and SCOPUS to identify a combination of MeSH terms and keywords relevant to sexual health literacy and people with intellectual disabilities (see Figure 1). A full search strategy for PubMed is presented in Appendix S1. Preliminary searches were conducted between March and July 2022. This was followed by step 2 which consisted of comprehensive systematic searches conducted in May 2024 using CINAHL, Embase, PubMed, Medline, ProQuest Central and Scopus. No date restrictions were imposed. Finally, in step 3, citation snowballing was used to identify additional relevant texts by examining references cited in the included articles.

FIGURE 1.

Preliminary development of the search strategy.

Papers were eligible for inclusion if they reported original research, were published in peer‐reviewed journals and included perspectives or experiences of people with intellectual disabilities regarding sexual health literacy or related topics. We did not include grey literature due to acknowledged difficulties in systematically searching for such material (Saleh, Ratajeski, and Bertolet 2014). Intellectual disability was defined according to Schalock et al.'s description of significant limitations in intellectual function and adaptive behaviour. Papers were excluded if they were published in languages other than English, involved non‐human subjects, or included participants with and without intellectual disability in which responses from people with intellectual disabilities were not separated. Given the wide range of study types and consistent with scoping review methods (Peters et al. 2022) we did not conduct a quality appraisal of included studies, nor did we exclude studies based on research quality.

The authors used Covidence™ to manage the review, selection, and data extraction process. Two authors independently completed each stage of screening, and data extraction and any conflicts were resolved in consultation with a third author by returning to the original text. There was substantial agreement between the reviewers as measured by the Kappa Coefficient for interrater reliability score of 0.72 and 0.7, respectively for abstract and full text screening. The data extracted included lead author, publication year, study location, study population including age range, gender and sexual orientation, study aims, study design, dimensions of sexual health literacy addressed, and key findings. We were unable to extract data relating to the level of intellectual disability as this was reported inconsistently or not at all. Texts were subject to interpretive content analysis (Drisko et al. 2015). All text labelled ‘results’, ‘findings’ or ‘discussion’ was subjected to line‐by‐line coding. Line‐by‐line coding was initially completed by three authors separately, then coding was compared. Inconsistency between authors was resolved through discussion and by returning to the original text. After the tenth text there was consistency between all three authors. Following three authors each independently coded one‐third of the texts. During this process, the authors met regularly to discuss the wording of codes, for clarity of interpretation and to ensure consistency across the texts. During coding of the final 15 texts no new codes were found, indicating that those codes identified adequately represented the existing literature. The process of coding was managed using QSR NVIVO™. Following this, codes were categorised into components of sexual health literacy and the relationships between categories identified. Understanding gleaned from this process led to the development of a conceptual model of sexual health literacy for people with intellectual disabilities, which is depicted visually in Figure 2.

FIGURE 2.

Conceptual model of sexual health literacy for people with intellectual disabilities.

2.1. Reflexivity

As interpretive content analysis involves some level of subjective interpretation, the worldviews and experiences of the authors influenced the interpretations of the text. None of the authors have intellectual disability and all are heterosexual women. The authors have diverse ethnic backgrounds representing Ireland, China, Persia, and Australia and come from different disciplinary backgrounds: occupational therapy, rehabilitation counselling and sociology. Two authors have clinical or casework experiences that inform their practice in supporting people with intellectual disabilities to achieve sexual health. All authors are committed to a rights‐based approach to sexual health and well‐being. Reflexivity was practised through regular discussions, where differing views were shared, and common understandings reached.

3. Results

Initial searches yielded 5447 papers. An additional 43 papers were identified through citation snowballing. Following removal of duplicates, 4251 papers were screened for inclusion. Ultimately, 102 papers were included. A detailed account of the literature screening process is illustrated in Figure 3 while an overall summary of included literature is provided in Table 1.

FIGURE 3.

Flow of studies into and out of the review.

TABLE 1.

Overview of included studies (n = 102).

Lead author (Year)	Location	Research design (data collection method)	n a	Gender b	Sexual orientation	Aspects of sexuality addressed
(Abbott 2013)	United Kingdom	Qualitative (Interviews)	11	Men	Lesbian/Gay Bisexual	Sexual orientation Sexual expression Sexual discrimination Sexual abuse/violence
(Abbott and Burns 2007)	United Kingdom	Qualitative (Interviews)	20	Men Women Transgender	Lesbian/Gay Bisexual	Sexual orientation Relationships/pleasure Sexual discrimination
(Aderemi, Pillay, and Esterhuizen 2013)	Nigeria	Quantitative (Cross‐sectional)	300	Men Women	Not reported	Sexually transmitted infections
(Aderemi and Pillay 2013)	Nigeria	Quantitative (Cross‐sectional)	300	Men Women	Not reported	Sexual expression
(Ashworth and Carton 2022)	United Kingdom	Quantitative (pre‐post within group comparison)	14	Women Men	Not reported	Sexual expression Relationships/pleasure
(Azzopardi‐Lane and Callus 2015)	Malta	Qualitative (Participatory)	40	Men Women	Not reported	Sexual expression Relationships/pleasure
(Bernert and Ogletree 2013)	United States	Qualitative (Interviews, observations)	14	Women	Heterosexual	Sexual expression Relationships/pleasure
(Bernert 2011)	United States	Qualitative (Interviews, observations)	14	Women	Not reported	Sexual expression
(Brantlinger 1985)	United States	Qualitative (Interviews)	13	Men Women	Not reported	Sexual orientation Sexual expression Relationships/pleasure Reproduction Contraception
(Brkić‐Jovanović et al. 2021)	Serbia	Quantitative (Cross‐sectional)	100	Men Women	Not reported	Sexual expression Sexual abuse/violence
(Cambridge 1996)	United Kingdom	Quantitative (Cross‐sectional)	34	Men	Heterosexual Lesbian/Gay	Sexual orientation Relationships/pleasure Sexually transmitted infections Sexual abuse/violence
(Caspar and Glidden 2001)	United States	Quantitative (Non‐randomised experimental)	12	Men Women	Not reported	Sexual expression
(Chou et al. 2020)	Taiwan	Mixed Methods	87	Men Women	Not reported	Sexual expression Reproduction Contraception
(Chou, Lu, and Pu 2015)	Taiwan	Mixed Methods	100	Men Women	Not reported	Sexual expression
(Conder et al. 2011)	New Zealand	Qualitative (Interviews)	19	Men Women	Heterosexual	Relationships/ Reproduction Contraception
(Coulter, Lynch, and Joosten 2023)	Australia	Qualitative (interviews)	2	Women Men	Heterosexual	Relationships/pleasure Sexual expression
(David, Smith, and Friedman 1976)	United States	Qualitative (Interviews)	35	Men Women	Not reported	Reproduction Contraception
(Dawood et al. 2006)	South Africa	Quantitative (Cross‐sectional)	90	Men Women	Not reported	Sexual expression Sexually transmitted infections
(de Wit, Roeg, and Embregts 2023)	The Netherlands	Qualitative (concept mapping)	9	Women Men	Not reported	Sexual expression Relationships/pleasure Sexual orientation
(Dotson, Stinson, and Christian 2003)	United States	Qualitative (Interviews)	7	Women	Heterosexual	Sexual expression Reproduction Contraception
(Drew et al. 2023)	United States	Quantitative (Quasi experimental)	7	Women Men	Not reported	Sexual orientation Relationships/pleasure Reproduction Contraception
(Eastgate et al. 2011)	Australia	Qualitative (Interviews)	9	Women	Heterosexual	Sexual expression Relationships/pleasure Sexual abuse/violence
(Edwards 2021)	United States	Quantitative (Cross‐sectional)	Not reported	Men Women	Not reported	Sexual expression Sexually transmitted infections Sexual abuse/violence
(Estruch‐García, Gil‐Llario, and Fernández‐García 2024)	Spain	Quantitative (Cross‐sectional)	142	Women Men	Heterosexual Bisexual Homosexual	Sexual orientation Sexual expression Relationships/pleasure Contraception Sexual abuse/violence
(Fitzgerald and Withers 2013)	United Kingdom	Qualitative (Interviews)	10	Women	Heterosexual	Sexual orientation Sexual expression
(Frawley and Wilson 2016)	Australia	Qualitative (Focus groups)	25	Men Women	Not reported	Sexual expression
(Gil‐Llario et al. 2023)	Spain	Quantitative (Cross‐sectional)	208	Men Women	Not reported	Sexual orientation Sexual expression Relationships/pleasure Contraception Sexual abuse/violence
(Gil‐Llario et al. 2023)	Spain	Quantitative (cross‐sectional)	330	Women Men	Not reported	Reproduction Contraception Sexually transmitted infections
(Gil‐Llario et al. 2022)	Spain	Quantitative (Cross‐sectional)	253	Men Women	Heterosexual Lesbian/Gay Bisexual	Sexual expression Contraception
(Gil‐Llario et al. 2018)	Spain	Quantitative (Cross‐sectional)	360	Men Women	Heterosexual Lesbian/Gay	Sexual expression Contraception Sexual abuse/violence
(Green 2001)	United Kingdom	Qualitative (Case report)	1	Women	Heterosexual	Sexual abuse/violence
(Hays et al. 2007)	United Kingdom	Qualitative (Interviews)	16	Men	Not reported	Sexual abuse/violence
(Healy et al. 2009)	Ireland	Qualitative (Focus groups)	32	Men Women	Not reported	Sexual expression
(Hemati Alamdarloo et al. 2023)	Iran	Quantitative (Randomised)	30	Women	Not reported	Sexual expression Relationships/pleasure Contraception Sexual abuse/violence
(Heyman 1995)	United Kingdom	Qualitative (Interviews)	20	Men Women	Not reported	Sexual expression Relationships/pleasure
(Hickman & Morris, 2022)	United Kingdom	Quantitative (Cohort)	16	Men	Not reported	Sexual abuse/violence
(Hole, Leyton, and Cantle 2022)	Canada	Qualitative (Interviews)	19	Men Women	Not reported	Sexual expression Relationships/pleasure
(Hollomotz & The Speakup Committee, 2009)	United Kingdom	Qualitative (Focus groups, Participatory research)	15	Not reported	Heterosexual	Sexual expression
(Horner‐Johnson et al. 2022)	United States	Qualitative (Focus groups)	4	Women	Not reported	Reproduction Contraception
(Isler et al. 2009)	Turkey	Quantitative (Cross‐sectional)	60	Men Women	Not reported	Sexual expression
(Jahoda and Pownall 2014)	United Kingdom	Quantitative (Cross‐sectional)	30	Men Women	Not reported	Sexual expression
(Janeslätt et al. 2019)	Sweden	Quantitative (Feasibility)	6	Men Women	Not reported	Reproduction
(Kurt and Kurtuncu 2024)	Turkey	Quantitative (Randomised Controlled Trial)	48	Men Women	Not reported	Sexual expression
(Kurt and Kurtuncu 2023)	Turkey	Quantitative (cross sectional)	350	Men Women	Not reported	Sexual abuse/violence
(Kijak 2013)	Poland	Quantitative (Cross‐sectional)	133	Men Women	Not reported	Sexual expression Relationships/pleasure Reproduction Contraception
(Konstantareas and Lunsky 1997)	Canada	Qualitative (interviews)	16	Men Women	Not reported	Sexual expression
(Langdon et al. 2007)	United Kingdom	Quantitative (Cross‐sectional)	34	Men	Not reported	Sexual abuse/violence
(Lesseliers and Van Hove 2002)	Belgium	Qualitative (Interviews)	34	Men Women	Not reported	Sexual expression Relationships/pleasure Sexual abuse/violence
(Lindsay et al. 1992)	United Kingdom	Quantitative (Non‐randomised experimental)	60	Men Women	Not reported	Sexual expression Reproduction Contraception
(Liou 2022)	Taiwan	Quantitative (Cross‐sectional)	181	Men	Not reported	Relationships/pleasure Sexually transmitted infections
(Löfgren‐Mårtenson 2012)	Sweden	Qualitative (Interviews)	16	Men Women	Heterosexual Lesbian/Gay	Sexual expression Relationships/pleasure Sexually transmitted infections
(Löfgren‐Mårtenson 2009)	Sweden	Qualitative (Interviews)	13	Men Women	Not reported	Sexual orientation Sexual expression
(Löfgren‐Mårtenson 2004)	Sweden	Qualitative (Interviews, observation)	13	Men Women	Not reported	Sexual orientation Sexual expression Relationships/pleasure
(Long, Krawczyk, and Kenworthy 2013)	United Kingdom	Mixed Methods	16	Women	Heterosexual Lesbian/Gay Bisexual Asexual	Sexual orientation Contraception Reproduction Relationships/pleasure
(Lumley et al. 1998)	United States	Quantitative (non‐randomised experimental)	6	Women	Not reported	Sexual abuse/violence
(Lunsky et al. 2007)	Canada & United States	Quantitative (Cross‐sectional)	96	Men	Not reported	Sexual expression Sexual abuse/violence
(Mansell, Sobsey, and Calder 1992)	Canada & United States	Quantitative (Cross‐sectional)	119	Men Women	Not reported	Sexual abuse/violence
(Mayes, Llewellyn, and McConnell 2006)	Australia	Qualitative (Interviews)	17	Women	Heterosexual	Reproduction
(McCabe, Cummins, and Deeks 1999)	Australia	Mixed Methods	55	Men Women	Not reported	Sexual expression Contraception Reproduction Relationships/pleasure
(McCabe 1999)	Australia	Quantitative (Cross‐sectional)	60	Men Women	Not reported	Sexual expression Contraception Reproduction Relationships/pleasure
(McCabe and Cummins 1996)	Australia	Quantitative (Cross‐sectional)	30	Men Women	Not reported	Sexual expression Contraception Reproduction Relationships/pleasure
(McCabe, Cummins, and Reid 1994)	Australia	Quantitative (Cross‐sectional)	30	Men Women	Not reported	Sexual abuse/violence
(McCarthy 2010)	United Kingdom	Qualitative (Interviews)	23	Women	Not reported	Contraception
(McCarthy 2009b)	United Kingdom	Qualitative (Interviews)	23	Women	Not reported	Contraception
(McCarthy 2009a)	United Kingdom	Qualitative (Interviews)	23	Women	Not reported	Contraception
(McDermott et al. 1999)	United States	Quantitative (non‐randomised experimental)	252	Women	Not reported	Sexual expression Relationships/pleasure Reproduction Contraception Sexually transmitted infections Sexual abuse/violence
(McGillivray 1999)	Australia	Quantitative (Cross‐sectional)	60	Men Women	Not reported	Contraception Sexually transmitted infections
(Michie et al. 2006)	United Kingdom	Quantitative (Cross‐sectional)	68	Men	Not reported	Sexual orientation Sexual expression Relationships/pleasure Reproduction Contraception Sexually transmitted infections
(Middleton et al. 2021)	United Kingdom	Qualitative (Focus groups)	25	Men Women	Heterosexual Bisexual	Sexually transmitted infections
(Murphy et al. 2007)	United Kingdom	Quantitative (non‐randomised experimental)	10	Men	Not reported	Relationships/pleasure Sexual abuse/violence
(Murphy and O'Callaghan 2004)	United Kingdom	Quantitative (Cross‐sectional)	60	Men Women	Not reported	Relationships/pleasure Sexual abuse/violence Contraception
(Neuman and Reiter 2017)	Israel	Mixed Methods	80	Men Women	Not reported	Relationships/pleasure
(Oakes & Thorpe, 2019)	United States	Qualitative	4	Men Women	Not reported	Sexual expression
(Olaleye et al. 2007)	Nigeria	Quantitative (Cross‐sectional)	10	Men Women	Not reported	Sexual expression Relationships/pleasure Reproduction Contraception Abortion Sexually transmitted infections Sexual abuse/violence
(Ousley and Mesibov 1991)	United States	Quantitative (Cross‐sectional)	20	Men Women	Not reported	Sexual expression Relationships/pleasure
(Pownall, Wilson, and Jahoda 2020)	United Kingdom	Quantitative (Cross‐sectional)	29	Men Women	Not reported	Relationships/pleasure Reproduction Contraception
(Rojas, Haya, and Lázaro‐Visa 2016)	Spain	Qualitative (Interviews)	16	Men Women	Not reported	Sexual expression Relationships/pleasure
(Rushbrooke, Murray, and Townsend 2014)	United Kingdom	Qualitative (Interviews)	9	Men Women	Heterosexual Lesbian/Gay Bisexual	Sexual expression Relationships/pleasure
(Schaafsma et al. 2017)	Netherlands	Qualitative (Interviews)	20	Men Women	Not reported	Sexual orientation Sexual expression Relationships/pleasure Reproduction Contraception Sexually transmitted infections Sexual abuse/violence
(Servais et al. 2002)	Belgium	Quantitative (Cross‐sectional)	397	Women	Not reported	Contraception
(Siebelink et al. 2006)	The Netherlands	Quantitative (Cross‐sectional)	76	Men Women	Not reported	Sexual expression Relationships/pleasure
(Stoffelen et al. 2017)	The Netherlands	Qualitative (Content analysis)	187	Men Women	Not reported	Sexual expression Relationships/pleasure
(Stoffelen et al. 2013)	The Netherlands	Qualitative (Interviews)	21	Men Women	Lesbian/Gay	Sexual orientation Sexual expression
(Stromsness 1994)	United States	Qualitative (Interviews)	27	Men Women	Not reported	Sexual abuse/violence
(Svae, Blixt, and Søndenaa 2022)	Norway	Qualitative (Interviews)	7	Men Women	Not reported	Relationships/pleasure Sexual abuse/violence
(Szollos and McCabe 1995)	Australia	Quantitative (Cross‐sectional)	25	Men Women	Not reported	Sexual expression Contraception Reproduction Sexually transmitted infections Sexual abuse/violence
(Tanabe et al. 2015)	Kenya Nepal Uganda	Qualitative (Interviews, Focus groups)	51	Men Women	Not reported	Reproduction Contraception Sexually transmitted infections Sexual abuse/violence
(Tang and Lee 1999)	Hong Kong	Quantitative (Cross‐sectional)	77	Women	Not reported	Sexual abuse/violence
(Thompson 1994)	United Kingdom	Qualitative (Interviews)	19	Men	Not reported	Sexual orientation Sexual expression Sexual abuse/violence Sexually transmitted infections
(Timmers, Ducharme, and Jacob 1981)	United States	Mixed Methods	25	Men Women	Not reported	Sexual expression Relationships/pleasure Contraception Sexually transmitted infections
(Turner and Crane 2016b)	United States	Qualitative (Interviews, Observations)	5	Men Women	Heterosexual	Sexual expression Relationships/pleasure
(Turner and Crane 2016a)	United States	Qualitative (Interviews, Observations)	5	Men Women	Not reported	Sexual expression
(Valenti‐Hein, Yarnold, and Mueser 1994)	United States	Quantitative (Randomised controlled trial)	27	Men Women	Not reported	Relationships/pleasure
(van den Toren et al. 2022)	Netherlands	Mixed Methods	249	Women	Not reported	Sexual expression Contraception Sexually transmitted infections Sexual abuse/violence
(van Schrojenstein Lantman‐de Valk, Rook, and Maaskant 2011)	Netherlands	Quantitative (Cross‐sectional)	112	Women	Not reported	Contraception
(Verbeek et al. 2023)	Netherlands	Quantitative (cross sectional)	120	Men	Not reported	Sexual orientation Sexual expression Relationships/pleasure Sexual discrimination Sexual abuse/violence
(Walmsley et al. 2016)	United Kingdom	Qualitative (Interviews)	19	Women	Not reported	Contraception
(Wells, Clark, and Sarno 2014)	United States	Quantitative (non‐randomised experimental)	37	Men	Heterosexual Lesbian/Gay Bisexual	Sexually transmitted infections
(Wells, Clark, and Sarno 2012)	United States	Mixed Methods	25	Women	Not reported	Sexually transmitted infections
(Wilbur, Poilapa, and Morrison 2022)	Vanuatu	Qualitative (Interviews, observation, Photovoice)	17	Women	Not reported	Menstruation
(Wilkinson, Theodore, and Raczka 2015)	United Kingdom	Qualitative (Interviews)	4	Men Women	Not reported	Sexual orientation Sexual expression
(Yacoub and Hall 2009)	United Kingdom	Qualitative (Interviews)	17	Men	Heterosexual Lesbian/Gay	Sexual orientation Sexual expression Relationships/pleasure Contraception Sexually transmitted infections

^a Only participants with intellectual disability are included in this count.

^b Only Abbott and Burns (2007) stated that they included transgender participants.

Most of the included literature emerged from the United Kingdom (n = 27, 26.5%), the United States of America (USA) (n = 20, 19.6%) and Australia (n = 10, 9.8%). This was followed by the Netherlands (n = 8, 7.8%), Spain (n = 6, 5.9%), Sweden (n = 4, 3.9%), Nigeria (n = 3, 2.9%), Taiwan (n = 3, 2.9%) and Turkey (n = 3, 2.9%). Two papers each were included from Belgium, and Canada (2%). One paper was included from each of Hong Kong, Iran, Ireland, Israel, Malta, New Zealand, Norway Poland, Serbia, South Africa, and Vanuatu (0.98%, respectively). Three papers (2.9%) included collaborators from multiple countries (two from the USA and Canada and one from Kenya, Nepal, and Uganda).

Among the included papers, there were 45 qualitative studies (44%), 47 quantitative studies (46%) and 10 mixed methods studies (9.8%). Among qualitative studies, the most frequently reported approach to data collection was interview (n = 36, 80%), followed by focus group (n = 7, 15.5%) and participant observation (n = 6, 13.3%). Most quantitative studies were observational (n = 35, 74.4%) with the remaining studies being experimental and quasi experimental designs (n = 12, 25.5%).

Combined, the studies captured the perspectives of 6422 adults with intellectual disabilities. Across all studies, one participant identified as transgender (0.01%), although it is not clear if this question was asked of all participants. Participants' ages ranged from 18 to more than 65 years and most studies included participants across the lifespan. Participant sexual orientation was reported in 32 studies (31%) and was predominantly heterosexual, with 12 studies (11.7%) including participants who identified as lesbian/gay, bisexual, or asexual.

None of the included studies explicitly addressed sexual health literacy, instead they focused on a range of sexual health topics. The sexual health aspects addressed included sexual expression (n = 62, 61%), relationships/pleasure (n = 44, 43%), contraception (n = 37, 36.3%), sexual abuse (n = 32, 31%), reproduction (n = 22, 21.6%), sexually transmitted infections (n = 21, 20.6%), sexual orientation (n = 19, 18.6%), sexual discrimination (n = 3, 2.9%) and abortion (n = 1, 0.9%), with some papers addressing multiple aspects of sexual health.

3.1. Sexual Health Literacy

Our interpretive content analysis led to the development of a conceptual framework to understand experiences of sexual health literacy among people with intellectual disabilities (Figure 3). At the core of this framework are two fundamental pillars of sexual health literacy: sexual knowledge and sexual autonomy. Access to sexual education and opportunities to acquire accurate, timely and comprehensive sexual knowledge is a critical step to achieving sexual health literacy. This is closely linked to sexual autonomy through which people with intellectual disabilities are supported and enabled to make choices relating to sexuality including, but not limited to, choices about participating in sexual activity, forming intimate relationships and reproductive decisions. In the absence of either sexual knowledge or sexual autonomy, people with intellectual disabilities are limited in their capacity to acquire and/or use sexual health literacy skills.

The availability of sexual knowledge and sexual autonomy is shaped by the social environment in which people with intellectual disabilities are situated. Several factors were identified which influenced how people with intellectual disability navigated sexuality in this environment. These are presumed sexual vulnerability and sexual incompetence, expectations of heteronormativity and non‐sexuality. Combined, these factors cast a long shadow over opportunities for acquisition of sexual knowledge and enactment of sexual autonomy and ultimately appear to limit sexual literacy among people with intellectual disabilities.

3.2. Sexual Knowledge

People with intellectual disabilities had limited opportunity to obtain sexual knowledge and most studies report that people with intellectual disability have poor knowledge and understanding of sexuality (Aderemi and Pillay 2013; Aderemi, Pillay, and Esterhuizen 2013; Ashworth and Carton 2022; Bartsch et al. 2016; Brantlinger 1985; Cambridge 1996; Chou, Lu, and Pu 2015; Conder et al. 2011; Drew et al. 2023; Eastgate et al. 2011; Fitzgerald and Withers 2013; Frawley and Wilson 2016; Gil‐Llario et al. 2022; Jahoda and Pownall 2014; Long, Krawczyk, and Kenworthy 2013; Lumley et al. 1998; McCabe 1999; McCabe and Cummins 1996; McCabe, Cummins, and Deeks 1999; McCarthy 2009a, 2009b; McGillivray 1999; Michie et al. 2006; Middleton et al. 2021; Murphy and O'Callaghan 2004; Olaleye et al. 2007; Pownall, Wilson, and Jahoda 2020; Siebelink et al. 2006; Stoffelen et al. 2013; Svae, Blixt, and Søndenaa 2022) For most people with intellectual disability access to reliable, accurate sexual education was not easy, with many relying on information gleaned from television programs (Dawood et al. 2006; Frawley and Wilson 2016; Heyman 1995; Hole, Leyton, and Cantle 2022; Jahoda and Pownall 2014; Michie et al. 2006; Turner and Crane 2016b), friends (Eastgate et al. 2011; Frawley and Wilson 2016; Isler et al. 2009; Jahoda and Pownall 2014), the internet (Frawley and Wilson 2016) and pornography (Brantlinger 1985; Frawley and Wilson 2016). This is exemplified by comments such as

“he stated that he learned how to have sex from movies.” (Turner and Crane 2016a) p.687

and

“a mate he saw at drag races who ‘told him stuff’ but he was unsure of the reliability of this information” (Frawley and Wilson 2016)(p.475)

Where formal sexual education was provided, it typically occurred in the context of a school, post‐school or training environment (Dotson, Stinson, and Christian 2003; Drew et al. 2023; Eastgate et al. 2011; Frawley and Wilson 2016; Healy et al. 2009; Isler et al. 2009; Jahoda and Pownall 2014; Liou 2022; Stoffelen et al. 2017), with some people with intellectual disability reporting having received additional formal education from disability services (Healy et al. 2009; McCarthy 2009b). Evaluation of these education programs indicates that education improved sexual knowledge (Caspar and Glidden 2001; Chou et al. 2020; Edwards 2021; Gil‐Llario et al. 2023; Hemati Alamdarloo et al. 2023; Kurt and Kurtuncu 2024; Lindsay et al. 1992; Liou 2022; Lumley et al. 1998; Murphy et al. 2007; Valenti‐Hein, Yarnold, and Mueser 1994; van den Toren et al. 2022; Wells, Clark, and Sarno 2014; Wells, Clark, and Sarno 2012). However, in most cases education appeared to adopt a risk management perspective, focusing on issues such as prevention of disease transmission and pregnancy rather than adopting a positive perspective of sexuality and sexual health. For example (Rojas, Haya, and Lázaro‐Visa 2016) note that

“the subjects tackled were always the same: the reproductive organs, sexually transmitted disease and contraception” (p. 60)

Formal sexual education was also primarily focused on heterosexual sexual activity and rarely included discussion about diverse sexual identities or practices (Cambridge 1996; Löfgren‐Mårtenson 2009). This had the impact of reducing formal education to focusing on physical aspects of heterosexual activity and meant that there was limited opportunity for people with intellectual disability to discuss their sexual identity or talk about relational or sexual feelings (Dotson, Stinson, and Christian 2003; Fitzgerald and Withers 2013; Hole, Leyton, and Cantle 2022; Lesseliers and Van Hove 2002). In some instances, sexual education was not routinely provided to all people with intellectual disabilities but was only offered when it became evident that sexual activity was occurring, usually through an unplanned pregnancy (Frawley and Wilson 2016; McCarthy 2009a), acquisition of sexual transmitted disease (Wilkinson, Theodore, and Raczka 2015), (Wilkinson, Theodore, and Raczka 2015) or through concerns relating to potential for sexual abuse (Ashworth and Carton 2022). Furthermore, the emphasis on risk prevention and the failure to include discussion of sexual pleasure and sexual rights meant that, for many people sexuality, was understood as something to be feared, as noted by Frawley and Wilson (2016)

“the overwhelming message was that sex and sexual relationships were something to be concern or scared about” (p.482)

Sexual education was typically delivered in formal time limited programs (Ashworth and Carton 2022; Drew et al. 2023; McDermott et al. 1999; Murphy and O'Callaghan 2004) and ongoing discussions of sexuality were not always facilitated by service providers. The absence of opportunities for ad hoc discussion meant that if people with intellectual disability encountered challenges or wanted to seek advice about relationships or intimacy, they had limited opportunities to do so,

“one woman reported that she did not know whom she could talk to if she had a problem or question about her body or her health” (Dotson, Stinson, and Christian 2003)(p. 201)

This contrasted with a whole‐of‐service approach to normalising sexuality of people with intellectual disabilities which provided opportunity for regular discussions with keyworkers and educators about sexuality and meant people with intellectual disability,

“willingly discussed whom they liked; and the staff were supportive in discussing sensitive topics with them” (Chou et al. 2020) (p.1211)

This approach, while atypical, allowed people with intellectual disabilities to initiate conversations with staff and each other in an informal way, which supported them to build trust and confidence to express their concerns or ask questions.

3.3. Sexual Autonomy

People with intellectual disabilities view themselves as sexual beings and were often sexually active with similar desires to those without disability (Aderemi and Pillay 2013; Brkić‐Jovanović et al. 2021; Cambridge 1996; Dotson, Stinson, and Christian 2003; Frawley and Wilson 2016; Gil‐Llario et al. 2018; McGillivray 1999; Olaleye et al. 2007; Svae, Blixt, and Søndenaa 2022; Turner and Crane 2016a, 2016b; van Schrojenstein Lantman‐de Valk, Rook, and Maaskant 2011). Romantic relationships were a common aspiration (Abbott 2013; Azzopardi‐Lane and Callus 2015; Chou et al. 2020; Chou, Lu, and Pu 2015; Eastgate et al. 2011; Frawley and Wilson 2016; Gil‐Llario et al. 2018; Healy et al. 2009; Heyman 1995; Hollomotz 2009; Lesseliers and Van Hove 2002; Löfgren‐Mårtenson 2004; McCabe 1999; Neuman and Reiter 2017; Rojas, Haya, and Lázaro‐Visa 2016; Siebelink et al. 2006; Stoffelen et al. 2013; Stoffelen et al. 2017; Stromsness 1994; Svae, Blixt, and Søndenaa 2022; Thompson 1994; Turner and Crane 2016a; Yacoub and Hall 2009), with participants in the studies experiencing or wanting to experience fulfilling relationships. Long‐term relationships including marriage (Chou et al. 2020; Chou, Lu, and Pu 2015; Frawley and Wilson 2016; Healy et al. 2009; Heyman 1995; Konstantareas and Lunsky 1997; Lesseliers and Van Hove 2002; Neuman and Reiter 2017; Stoffelen et al. 2013; Stoffelen et al. 2017; Szollos and McCabe 1995) and children (Brantlinger 1985; Chou, Lu, and Pu 2015; Dotson, Stinson, and Christian 2003; Healy et al. 2009; Janeslätt et al. 2019; Konstantareas and Lunsky 1997; Lesseliers and Van Hove 2002; Rojas, Haya, and Lázaro‐Visa 2016; Stoffelen et al. 2017; Turner and Crane 2016b) represented a desirable and normative adult milestone. For example, a participant in Rojas, Haya, and Lázaro‐Visa (2016) reported:

(…) because I want (to have a partner), and I see that in my family they are married and have children and all that … well it makes me cry, but my great hope is to have a house, a partner and to have a daughter. (p.60)

Moreover, participants with experience of intimate relationships reported that being in a relationship provided positive benefits including companionship (Healy et al. 2009; Lesseliers and Van Hove 2002; Neuman and Reiter 2017; Rojas, Haya, and Lázaro‐Visa 2016; Turner and Crane 2016b; Yacoub and Hall 2009), security (Healy et al. 2009; Neuman and Reiter 2017) and improved self‐esteem (Chou et al. 2020; Gil‐Llario et al. 2018; Healy et al. 2009; Neuman and Reiter 2017; Stoffelen et al. 2013; Turner and Crane 2016a, 2016b; Yacoub and Hall 2009). Despite this, people with intellectual disabilities had fewer romantic and sexual experiences than their non‐disabled peers (Aderemi and Pillay 2013; Aderemi, Pillay, and Esterhuizen 2013; Lesseliers and Van Hove 2002; McCabe 1999; McCabe and Cummins 1996; McGillivray 1999; Pownall, Wilson, and Jahoda 2020; Rojas, Haya, and Lázaro‐Visa 2016) and in many cases sexuality and sexual expression were looked upon negatively. These negative views included the idea of sexuality being taboo, (Chou et al. 2020; Chou, Lu, and Pu 2015; Jahoda and Pownall 2014; Tang and Lee 1999; Thompson 1994; Turner and Crane 2016a), being dirty or wrong (Brantlinger 1985; Chou, Lu, and Pu 2015; Dotson, Stinson, and Christian 2003; Fitzgerald and Withers 2013; Gil‐Llario et al. 2018; Hays et al. 2007; Heyman 1995; Hole, Leyton, and Cantle 2022; McCabe 1999; McCabe and Cummins 1996; Pownall, Wilson, and Jahoda 2020), shameful and embarrassing (Azzopardi‐Lane and Callus 2015; Chou et al. 2020; Chou, Lu, and Pu 2015; Conder et al. 2011; Isler et al. 2009; Lesseliers and Van Hove 2002; Rojas, Haya, and Lázaro‐Visa 2016; Stoffelen et al. 2013; Turner and Crane 2016a; Wilkinson, Theodore, and Raczka 2015; Yacoub and Hall 2009) and something to be feared (Healy et al. 2009; Isler et al. 2009; Rojas, Haya, and Lázaro‐Visa 2016; Stoffelen et al. 2013).

In certain instances, people with intellectual disabilities were directly punished for expressions of sexuality (Abbott 2013; Cambridge 1996; Chou, Lu, and Pu 2015; Lesseliers and Van Hove 2002; Turner and Crane 2016a). These punishments were significant events which stayed with participants; for example, a woman punished for waiting for a boy that she liked outside his building reported that:

“Ow, they made me remember that day, we were punished the whole day although we did nothing wrong. I will never forget that day” (p. 75) (Lesseliers and Van Hove 2002)

In addition to direct punishment, caregivers used a range of methods to discourage people with intellectual disabilities from exploring their sexuality. Lack of privacy was highlighted in many studies (Azzopardi‐Lane and Callus 2015; Bernert 2011; Healy et al. 2009; Heyman 1995; Lesseliers and Van Hove 2002; Löfgren‐Mårtenson 2004; McCabe and Cummins 1996; Middleton et al. 2021; Stoffelen et al. 2013; Yacoub and Hall 2009), regardless of whether people with intellectual disabilities were living in a private home or an institutional setting. Even where people had private rooms, they often could not lock doors or had their locks removed (Hollomotz 2009), and were regularly checked on by caregivers and parents (Healy et al. 2009; Hollomotz 2009; Middleton et al. 2021; Rojas, Haya, and Lázaro‐Visa 2016; Szollos and McCabe 1995). As described by participants in Yacoub and Hall (2009) this meant “I had my room but not my privacy” (p.9).

Rules were also imposed upon people with intellectual disabilities who were in a relationship, impacting romantic and sexual experiences with partners (Azzopardi‐Lane and Callus 2015; Chou, Lu, and Pu 2015; Fitzgerald and Withers 2013; Hollomotz 2009; Löfgren‐Mårtenson 2004; Stoffelen et al. 2013; Turner and Crane 2016a). These rules determined the level of sexual intimacy people with intellectual disability were permitted. For example,

She [A participant] felt the staff ‘allowed’ her and her boyfriend to ‘be a couple’ and to ‘kiss and cuddle’ but she did not think they would ‘allow’ her to have sex with him. (Fitzgerald and Withers 2013) (p. 9)

This extended to restricting their opportunities for dating or marriage (Abbott 2013; Bernert 2011; Healy et al. 2009; Heyman 1995; Lesseliers and Van Hove 2002; Rojas, Haya, and Lázaro‐Visa 2016). Even if people with intellectual disability did not agree with the restrictions imposed by others, they perceived themselves to have limited options but to comply with the rules lest additional restrictions be imposed.

“I'm scared of you (the caregiver), afraid that you will not let us live together. Do not take him away from me.” (Neuman and Reiter 2017) (p. 142)

For some people, these restrictions led to use of secrecy and deception in their sexual expression to avoid punishment (Bernert 2011; Chou et al. 2020; Healy et al. 2009; Heyman 1995; Hollomotz 2009; Lesseliers and Van Hove 2002; Stoffelen et al. 2013; Thompson 1994). This meant taking up opportunities for sexual activity away from the surveillance of others.

At the centre we are not allowed to kiss and cuddle, but we still sneak one in when nobody is looking. (Heyman 1995)(p. 148):

Avoiding discovery by others meant that sexual activity was often furtive and rushed. To ensure the secrecy was maintained, sexual activity often occurred late at night within the institution or at locations such as carparks or behind a shed (Hollomotz 2009), public washrooms (Cambridge 1996; Thompson 1994; Yacoub and Hall 2009) and nearby gardens and forests (Heyman 1995; Stoffelen et al. 2013).

In addition to restrictions on sexual activity, women with intellectual disability also experienced lack of autonomy over reproductive decision‐making. Many women reported that decisions about contraception were made by others including family members, doctors and professional staff (Dotson, Stinson, and Christian 2003; Fitzgerald and Withers 2013; Frawley and Wilson 2016; Gil‐Llario et al. 2018; Gil‐Llario et al. 2022; Horner‐Johnson et al. 2022; McCarthy 2009a, 2009b, 2010; Middleton et al. 2021; van Schrojenstein Lantman‐de Valk, Rook, and Maaskant 2011; Walmsley et al. 2016). Contraceptive medication was routinely prescribed to women as a means of menstrual management, (Frawley and Wilson 2016; Gil‐Llario et al. 2018; McCarthy 2009a, 2009b; Szollos and McCabe 1995; van Schrojenstein Lantman‐de Valk, Rook, and Maaskant 2011; Walmsley et al. 2016), but in many cases the women were unaware of the impact of medication on their reproductive possibilities (Gil‐Llario et al. 2018; Szollos and McCabe 1995; Turner and Crane 2016b; Walmsley et al. 2016). Even where there were no menstrual concerns and women were not sexually active, contraceptive medication was frequently encouraged, seemingly on a ‘just in case’ basis (McCarthy 2009a; Servais et al. 2002; van Schrojenstein Lantman‐de Valk, Rook, and Maaskant 2011; Walmsley et al. 2016). Women were rarely included in the decision‐making process either about the necessity for, or type of, contraception (Gil‐Llario et al. 2018; McCarthy 2009a, 2010; Servais et al. 2002) and, in some cases were prescribed contraceptive medication against their wishes:

“they forced me to have an implant when I was in the care home. They said if I do not have the implant they'd throw me out (p.31) (Walmsley et al. 2016)

4. Influencing Factors in the Social Environment

4.1. Sexual Vulnerability

The potential vulnerability of people with intellectual disabilities to sexual exploitation was frequently identified in the literature (Aderemi and Pillay 2013; Azzopardi‐Lane and Callus 2015; Bernert 2011; Chou, Lu, and Pu 2015; Eastgate et al. 2011; Fitzgerald and Withers 2013; Heyman 1995; Lesseliers and Van Hove 2002; Löfgren‐Mårtenson 2004, 2009; McCabe, Cummins, and Reid 1994; McCarthy 2009a, 2009b; Middleton et al. 2021; Murphy and O'Callaghan 2004; Olaleye et al. 2007; Rojas, Haya, and Lázaro‐Visa 2016; Stoffelen et al. 2017; Stromsness 1994; Tang and Lee 1999; Turner and Crane 2016b; van Schrojenstein Lantman‐de Valk, Rook, and Maaskant 2011; Wilbur, Poilapa, and Morrison 2022; Wilkinson, Theodore, and Raczka 2015; Yacoub and Hall 2009). Many studies reported that people with intellectual disabilities are more likely to be victims of sexual exploitation and sexual abuse than their non‐disabled peers (Aderemi, Pillay, and Esterhuizen 2013; Azzopardi‐Lane and Callus 2015; Bernert 2011; Chou, Lu, and Pu 2015; Gil‐Llario et al. 2018; Lesseliers and Van Hove 2002; Lindsay et al. 1992; Löfgren‐Mårtenson 2004; McCabe, Cummins, and Reid 1994; Murphy and O'Callaghan 2004; Rojas, Haya, and Lázaro‐Visa 2016; Stromsness 1994; van Schrojenstein Lantman‐de Valk, Rook, and Maaskant 2011). Sexual abuse was frequently reported by people with intellectual disabilities (Aderemi, Pillay, and Esterhuizen 2013; Eastgate et al. 2011; Gil‐Llario et al. 2018; Green 2001; Lumley et al. 1998; Mayes, Llewellyn, and McConnell 2006; Stromsness 1994; Yacoub and Hall 2009) and this was compounded by a pervasive belief that sex crimes against people with intellectual disabilities were unlikely to be prosecuted (Cambridge 1996; Eastgate et al. 2011; Gil‐Llario et al. 2018; Green 2001; Stromsness 1994; Tang and Lee 1999)

They figure a person who is handicapped with retardation is not going to testify or even tell and anyway if they did tell, the system would just ignore the complaint because this person is retarded or handicapped. (Stromsness 1994) p.146

The increased likelihood of people with intellectual disabilities being a victim of sex crimes was frequently attributed to their lack of knowledge about matters relating to sexuality including difficulties distinguishing between health and unhealthy relationships (Ashworth and Carton 2022; Brkić‐Jovanović et al. 2021; Cambridge 1996; Heyman 1995; Stoffelen et al. 2017; van Schrojenstein Lantman‐de Valk, Rook, and Maaskant 2011) and lack of knowledge and understanding of healthy and safe sexual activities (Eastgate et al. 2011; Heyman 1995; McCabe, Cummins, and Reid 1994; Olaleye et al. 2007). However, being classified as vulnerable did not trigger additional support for people with intellectual disabilities that would increase their prospects for positive sexual experiences. Instead, the label of vulnerability resulted for the most part in their capacity to make choices about sexual activity being questioned (Murphy and O'Callaghan 2004; Wilkinson, Theodore, and Raczka 2015) and attempts by parents and caregivers to remove opportunities for learning about sexuality, sexual exploration or expression (Abbott 2013; Brantlinger 1985; Chou, Lu, and Pu 2015; Healy et al. 2009; Hole, Leyton, and Cantle 2022; Jahoda and Pownall 2014; Mayes, Llewellyn, and McConnell 2006; Turner and Crane 2016b).

4.2. Sexual Incompetence

The perception that people with intellectual disabilities are vulnerable is related to a view that they lack competence or ability to navigate the (adult) world of desire and sexuality (Bernert 2011; Chou, Lu, and Pu 2015; Hollomotz 2009; Stromsness 1994) and that their sexual lives need to be closely monitored or supervised by others. Many studies reported on high levels of surveillance and supervision of sexual expression among people with intellectual disabilities (Abbott 2013; Bernert 2011; Cambridge 1996; Chou et al. 2020; Dotson, Stinson, and Christian 2003; Frawley and Wilson 2016; Heyman 1995; Pownall, Wilson, and Jahoda 2020; Rojas, Haya, and Lázaro‐Visa 2016; Stoffelen et al. 2013; Szollos and McCabe 1995) whereby people with intellectual disabilities were closely observed in their interactions with others and where evidence of sexual expression was identified i.e. perceived sexual interest in others, sexual behaviour, etc. this was closely regulated thus acting to reduce opportunities for sexual expression and sexual freedom.

4.3. Non‐sexuality

Closely related to perceived absence of sexual competence was the view that people with intellectual disabilities lack sexuality. This perspective was held by those in their immediate social networks as well as by the wider community (Cambridge 1996; Gil‐Llario et al. 2018; Heyman 1995; Hollomotz 2009; Neuman and Reiter 2017; Stoffelen et al. 2013; Turner and Crane 2016b; Wilkinson, Theodore, and Raczka 2015). In many instances this belief was grounded in a view of people with intellectual disabilities as being eternally childlike or existing in a state of suspended adolescence (Bernert 2011; Cambridge 1996; Fitzgerald and Withers 2013; Heyman 1995; Hollomotz 2009; Jahoda and Pownall 2014; Rojas, Haya, and Lázaro‐Visa 2016; Szollos and McCabe 1995; Wilkinson, Theodore, and Raczka 2015) and even when they expressed sexual desires these were dismissed or reinterpreted.

He likes to cuddle; this is not something sexual for him but rather has to do with attention and attachment (Stoffelen et al. 2013) (p. 1121)

For some people with intellectual disabilities, this external denial of sexuality was internalised leading to hiding or suppression of sexual desires (Bernert 2011; Lesseliers and Van Hove 2002; Turner and Crane 2016a).

4.4. Heteronormativity

Even if the possibility of sexuality was acknowledged, research points to an underlying assumption of heteronormativity applied to people with intellectual disabilities. This resulted in denial of the opportunities for people with intellectual disabilities to understand (Fitzgerald and Withers 2013; Löfgren‐Mårtenson 2009; Thompson 1994; Turner and Crane 2016b; Verbeek et al. 2023; Yacoub and Hall 2009) or claim a queer identity (Cambridge 1996; Löfgren‐Mårtenson 2009; Stoffelen et al. 2013; Thompson 1994) and in some cases, re‐interpretation of queer sexual behaviour as sexual experimentation or platonic friendship

there cannot be any homosexuals, right? (Laughter). In any case not in the sense of ‘sex’. Maybe a guy will be really, really close friends with a boy rather than a girl … that is possible (Löfgren‐Mårtenson 2009) (p. 23)

For people with intellectual disabilities, pervasive heteronormativity and the denial of queer sexuality by others were frequently internalised leading to stigmatising attitudes towards diverse sexualities (Brantlinger 1985; Dotson, Stinson, and Christian 2003; Fitzgerald and Withers 2013; Healy et al. 2009; Hole, Leyton, and Cantle 2022; Löfgren‐Mårtenson 2004, 2009; Murphy and O'Callaghan 2004; Stoffelen et al. 2013; Thompson 1994; Wilkinson, Theodore, and Raczka 2015) As one person with an intellectual disability notes

“Gay was bad and going to gay clubs was bad.” (Hole, Leyton, and Cantle 2022) (p. 457)

5. Discussion

Sexual health literacy is critical to exercising sexual health rights (Graf and Patrick 2015). Sexual health literacy is closely linked to sexual health and well‐being and has been found to influence overall quality of life (World Health Organisation 2023). This review aimed to explore how people with intellectual disabilities experience sexual health literacy.

Despite the importance of sexual health literacy, our review demonstrates an absence of targeted approaches to developing or supporting sexual health literacy among people with intellectual disabilities. No papers were identified which specifically focused on sexual health literacy among people with intellectual disabilities indicating an absence of research on this topic. The findings of our review suggest that sexual health literacy among people with intellectual disabilities is underpinned by opportunities to acquire sexual knowledge and express sexual autonomy, however we were unable to identify any studies where people with intellectual disabilities reported experiencing both concepts simultaneously. Instead, much of the research was focused almost entirely on sexual health education or on the other hand negotiation of sexual expression leading to limited opportunities for people with intellectual disabilities to integrate both components to attain a high level of sexual health literacy.

Our review suggests that sexual knowledge is a fundamental component of sexual health literacy. However, while we identified a number of programs designed to improve sexual knowledge among people with intellectual disabilities, focusing only on sexual knowledge acquisition fails to acknowledge the need for skills and opportunities to apply this knowledge (Martin 2017). Sexual health literacy is a complex skill which involves managing sexual relationships and healthcare, negotiating sexual pressures, employing protective strategies, and managing the moral stigma of sexually transmitted infection, sexual identities and social norms and expectations regarding acceptable sexual behaviour (Graf and Patrick 2015). If adults with intellectual disabilities are to be supported to acquire sexual health literacy, then it is essential that a comprehensive approach to sexual education is adopted.

Furthermore, our review indicates that in its current format sexuality education offers little support for developing relational aspects of sexuality and fails to promote a positive view of sexuality and sexual expression among people with intellectual disabilities. Instead, service providers and policy makers appear to have primarily focused on anatomy, puberty, menstruation, contraception, and sexually transmitted infections. While these topics are important, they do not reflect a comprehensive approach to sexuality. Furthermore, in many instances education was delivered as a once off intervention rather than being provided throughout childhood and adolescence. This approach is in stark contrast to the United Nations' technical guidance on sexual education which proposes that a comprehensive sexuality education goes beyond education about reproduction, risks and disease and should be consistently delivered to learners over time, in an age and developmentally appropriate way (United Nations Population Fund 2018).

In addition to sexual knowledge, our findings indicate that sexual autonomy is needed to enact sexual health literacy. Although some included studies described attempts by people with intellectual disabilities to enact their sexual autonomy, findings from our review suggest that for the most part, the capacity for adults with intellectual disabilities to be sexual beings is denied through the actions and attitudes of those around them. Acknowledgment of people with intellectual disabilities as sexual beings, who have capacity to make informed decisions about sexual expression, and who have the right to sexual autonomy is a critical step in developing sexual health literacy. However, our findings suggest that socio‐environmental factors of assumed sexual vulnerability, sexual incompetence, non‐sexuality and heteronormativity act to reduce opportunities for people with intellectual disabilities to be acknowledged as sexual beings.

The assumption of sexual vulnerability identified in the literature may be related to research which demonstrates that people with intellectual disabilities are at disproportionate risk of sexual abuse relative to other members of the community (Tomsa et al. 2021). However, we suggest that this data should not be used to support the denial of the right to sexual expression and sexual health. Instead, research and practice should focus on supporting people with intellectual disabilities to acquire knowledge and skills which enables them to successfully navigate relationships with others and identify the difference between healthy and non‐healthy sexual experiences.

Our findings also indicate a pervasive view of people with intellectual disabilities by others as lacking sexual competence and a strong suggestion that people with intellectual disabilities are simply without sexuality. These beliefs are concerning since they contribute to a social and policy environment which enables the sexual health literacy needs of people with intellectual disabilities to be deprioritised and excluded from mainstream services and support making it even more difficult for people with intellectual disability to acquire the knowledge and skills needed to navigate this aspect of daily life. Unless and until policy makers, service providers and professionals accept that people with intellectual disability both have the capacity and desire to express their sexuality it seems likely that sexual health literacy will remain a ‘nice to have’ rather an essential component of services for people with intellectual disability.

Finally, our review suggests that many people assume that people with intellectual disabilities are heterosexual. Similar assumptions have been made regarding people living with physical disability and chronic disease and are associated with sexual health services and sexual health education programs which do not meet the needs of the community (Kokay, Power, and McGrath 2023). Furthermore, for people with intellectual disabilities who often rely on disability support staff to facilitate connections with wider communities the denial of sexual and gender diversity can result in missed opportunities to access LGBTQI peers and education making it difficult to explore and develop LGBTQI identity.

5.1. Implications for Practice and Research

Our research suggests that sexual health literacy requires both sexual knowledge and sexual autonomy. Our review points to the need for professionals to adopt a comprehensive approach to sexual health literacy for people with intellectual disabilities and to ensure that they are supported to explore and express their sexuality across the lifespan. Our review also highlights several unhelpful attitudes towards sexuality among people with intellectual disabilities and points to the need for widespread social and cultural change to ensure that people with intellectual disabilities have the opportunity to exercise their rights to sexual health and well‐being. This reflects previous research which indicates the significant role played by public attitudes in determining opportunities for sexual expression among people with intellectual disabilities (Correa, Castro, and Barrada 2022). Such general attitudes influence and shape behaviours and attitudes of health professionals and so, it is important that educators explicitly address these attitudes when providing training and education for professionals. Failure to do so may mean that professionals working with people with intellectual disabilities continue to focus on sexual risk (de Wit, van Oorsouw, and Embregts 2022) rather than taking a more positive approach to facilitating acquisition of sexual health literacy skills. For researchers, there is a need to consider how sexual health literacy might be best developed across the lifespan. Existing work has largely focused on knowledge acquisition but programs which enable people with intellectual disabilities to develop skills and practice in applying this knowledge in everyday life are needed. Programs should be developed in collaboration with adults with intellectual disabilities and should pay particular attention to adopting an inclusive approach to sexual and gender identity.

5.2. Strengths

Sexual health literacy is an important but neglected concern for people with intellectual disabilities (Eastgate 2008). This review provides new insights on a critical component of sexual health: sexual health literacy. It also sheds light on significant gaps in research and practice and identifies key priorities to inform future work in this area. We systematically searched the electronic databases in collaboration with a health sciences information specialist and followed the PRISMA Scoping Review Guidelines in reporting our scoping review (Tricco et al. 2018). Our team brought diverse disciplinary and professional perspectives towards interpretation of texts, and we used regular team meetings to examine plausible alternative interpretations.

5.3. Gaps and Deficiencies

Most of the research included in our review was conducted in high‐income countries, and while there was some evidence of cultural diversity, most research involved people with intellectual disabilities in Western contexts. While our inclusion criteria specifically focused on people with intellectual disability many included studies did not report on the severity levels of intellectual disability among participants. This limits the generalisability of the combined study results given the strong influence of culture on how sexuality is expressed and experienced (Atallah and Redón 2023) and how intellectual disability is understood and may shape experiences of sexuality (Allison and Strydom 2009). In addition, there was limited evidence of sexual or gender diversity among participants in the original studies. Only 12 studies included people who identified as a non‐heterosexual and most studies did not provide information about participants' gender identities. People who identify as being from a sexual and gender minority are likely to have different sexual health literacy needs to heterosexual people. Future research should therefore attempt to recruit more diverse samples of people with intellectual disabilities. While our search strategy was systematic and included a wide range of databases, we did not search the grey literature. It is possible that had we included grey literature we may have uncovered additional insights into approaches to support people with intellectual disabilities to develop and use sexual health literacy skills. Future reviews should consider broadening the inclusion criteria to take into account unpublished material such as service design and evaluation reports which may provide relevant information.

6. Conclusion

Despite international commitments to the rights of individuals with intellectual disability to engage in safe, pleasurable sexual experiences and to enjoy good sexual health (United Nations 2006; World Health Organisation 2015) historically the sexual health rights of people with intellectual disability have been ignored (Schmidt et al. 2022). One approach to changing this situation is to support people with intellectual disabilities to acquire and use sexual health literacy. To date limited attention has been paid to supporting people with intellectual disability to acquire sexual health literacy skills. Future research should focus on design of comprehensive education which provides opportunity for people with intellectual disabilities to develop knowledge, skills relating to sexuality while also identifying opportunities to apply these skills in everyday life.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Appendix S1 Supporting Information.

McGrath, M. , Chong, L. , Collings, S. , and Pebdani, R. (2025) Sexual Health Literacy Among Adults With Intellectual Disabilities: A Scoping Review. Journal of Intellectual Disability Research, 69: 345–369. 10.1111/jir.13217.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.