Introduction

Traditionally, people with intellectual disability receive the same sexuality and relationship education as people without disability. This is modelled on a pedagogical structure that is authority-centered, with teachers posed as the authority figures and students the recipients of information [1]. This framework does not allow students to be part of the program development or have agency in their own learning [2]. The model is rarely appropriate for people with an intellectual disability nor are they offered enough access to specialised programs [3, 4]. People with intellectual disability often recount that the information presented in traditional sex education classes was difficult to understand and as a result, they have limited sexual knowledge compared to their peers [5,6,7].

Without an appropriate or reliable source of sexuality and relationship education, many people with intellectual disability rely on advice from friends, family, or the internet [8]. Research suggests that peers are a significant and often used resource [8,9,10]. Additionally, peers are perceived as a reliable source of information and some people are reluctant to talk to parents or teachers about topics of sex and relationships due to feelings of shame [10, 11]. However, the use of peers as a primary source of information without the addition of formal and regulated education poses the risk of exposure to misinformation [9].

Where sexuality and relationship education has been tailored to people with intellectual disability, it has historically been underpinned by conservative gendered objectives which focused on providing hygiene, contraceptive and abstinence advice for girls, and schooling boys regarding appropriate and inappropriate behaviour [8]. Rarely are people with intellectual disability acknowledged as having the right to love, desire, intimacy, and pleasure. This furthers negative and harmful stereotypes of people with intellectual disability as being incompetent or asexual [2].

Peer-learning can be a valuable tool for education programs in multiple settings and for various populations. It involves the use of peers in the delivery of informative content which allows students to become an integral part of the education process, to act as role models, and to share information in a way that is relatable and understandable to their peers [11]. Peer-learning is a commonly used resources in the field of health education, is cost effective, and can help to provide equal learning opportunities for hard-to-reach groups [11]. Early research suggests that peer-learning could be an effective resource for delivery of education programs to people with intellectual disability, with the potential to provide relatable content and an opportunity to share lived experiences [12].

In a seminal piece of work, Bullard and Wallace [13] report on a project conducted by the Human Sexuality Program at the University of California in San Francisco in 1976, they facilitated large scale sexuality education sessions to people with and without a disability. The sessions included presentations by people with disability who recounted their personal experiences. Feedback for the program reflected that the presentations were a significant factor in the program’s benefit and success [13]. As a result, the Human Sexuality Program was redeveloped to train people with disability to personally facilitate the sessions. Each participant underwent a year-long training process to become a socio-sexual educator-counsellor. Over three years, 30 individuals completed the training, of which 70% were themselves disabled. The sessions were designed to be presented to people with disabilities, their families, and health care providers. On reflection, a person who completed the Human Sexuality Program training detailed their experience, noting that the program addressed issues of intimacy, self-esteem, comfort level, validation, acknowledgment, personal preferences, and prejudices, as well as sexually related concerns. In reference to the peer-educator model, they said, “We don’t need to reinvent the wheel, we just need to use the wealth of resources we already have and attach it to a new motor.” [14].

The Human Sexuality Program paved the way for peer-educators to become an integral factor in the design of sex education for people with disability. However, this program was targeted towards people with a physical disability, rather than intellectual. Furthermore, there is a need for sex education programs to move beyond physical education to include that of relationships and sexuality, and to involve participants in the design of their own education programs [15]. In the past two decades, small but important advancements have been made to sexuality and relationship education for, and facilitated by, people with intellectual disability in the form of peer-learning.

The aim of this scoping review was to identify how peer-education models are being used in sexuality and respectful relationship education for people with an intellectual disability. It is hoped that the review may inform and promote the use of peer-learning programs and that such programs will benefit from the learnings explored herein. For the purpose of this review, the terms ‘peer-education’ and ‘peer-learning’ are used interchangeably, as are the terms ‘learning disability’ and ‘intellectual disability’ as both terms are prominent in the literature.

Method

An initial search of the literature was conducted with the intention of conducting a systematic literature review. However, after a surface appraisal of published and grey literature, the decision was made to conduct a scoping review due to the very limited resources and research on this topic and the varying study designs used by identified resources. This decision was informed by guidance published by Munn et al. [16].

The methodology of the scoping review conforms to the framework of the Joanna Briggs Institute (JBI), Methodology for Scoping Reviews [17]. The JBI scoping review process includes the extraction, analysis and presentation of results and is aligned with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses - Scoping Reviews (PRISMA-ScR) to enable comparable reporting [18]. This approach was chosen because it permits a broad exploration of the topic without restriction to study design or quality assessment, providing a comprehensive overview of the literature [19, 20]. Further, this methodology allowed inclusion of grey literature which provide a valuable insight into peer-education programs despite the absence of peer review publication.

The articles selected for review are heterogeneous in nature and include a range of research methodologies, therefore reporting of the data is achieved using narrative synthesis, a systematic and transparent method of analysis [21]. Quality assessment of sources was not required according to JBI scoping review methodology and the authors’ objective of assessing a diverse range of literature to identify the use of peer-education in this sector, rather than critique of program outcomes.

Data sources. A systematic and thorough online search was conducted in August 2021 using EBSCO, ERIC, Scopus, and Wiley databases. Search terms included “disability”, “peer”, “education”, “train*”, “teach*”, “sex”, “sexuality”, “intimacy*”, “relationship*”, “respect”, and their variations, directed by a Boolean search strategy whereby search terms were separated by “and” / “or”. In addition, a manual search was conducted using cite lists and reference lists of selected and relevent sources. Sources were limited to those written in English and written or published within the last 15 years (2006 to 2021). The search strategy yielded 1090 results (see Table 1).

Table 1 Databases used to search for relevant literature
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Study selection. Search results were screened for eligibility and all sources were required to meet three key eligibility criteria for inclusion in the review: (1) discuss and/or assess the use of peer-educator(s), (2) feature at least one person with a disability in a peer-educator role, and (3) include sexuality and/or respectful relationships as a focus of the education. Results were screened by title and abstract and duplicates and papers which failed the eligibility criteria were removed. Where two sources reported the same program, study, and results, only one was included with preference given to published or most recent literature. Reviews were excluded due to the potential replication of sources. The remaining papers were then screened using the full-text and selected sources were cross-checked by both authors to ensure consensus. The study selection process is demonstrated using the PRISMA flow chart [22](see Fig. 1). The study selection identified five papers for review.

Fig. 1
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PRISMA flow chart of search strategy

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Charting the data. Data were extracted from the selected sources to create a summary table under the following headings: study and location, aim, participants, methods, outcome measures, key findings. Results are presented in Table 2 in order of author alphabetical order. The location indicated the country where the program was conducted. The study methods were charted in terms of design, data collection and analysis.

Synthesizing and reporting the data. A narrative synthesis was used to create a broad overview of results. This is an iterative four-step process that can be completed in any order, and includes (1) deciding what sources will be included in the review, (2) developing a preliminary synthesis, (3) exploring the relationship between data, and (4) assessing the strength of the evidence [21]. This process was used to inform the results and discussion of the review and allowed for synthesis of heterogenous sources. Relationships between sources were explored in the context of intention, delivery, and outcomes. Finally, the quality of the studies was critiqued to assess the strength of the findings.

Table 2 Summary of the scoping review
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Results

A total of six sources met the screening criteria for inclusion in this scoping review. The sources were derived from projects or publications located in Australia (n = 3), the United Kingdom (n = 2) and the USA (n = 1). Five sources were published articles in peer-reviewed journals, while one was a dissertation in partial fulfilment of a Doctor of Philosophy degree (PhD). A heterogenous combination of analysis were used by the sources; three described a qualitative analysis, one a mixed method analysis, and two provided a program description and observations with no formal analysis. One source described a program which restricted the age of participants to 16 to 25 years while the other four did not restrict the age of participants. In total, four educational programs emerged from the sources. The programs are presented below under the following headings: Program 1: “Telling it like it is!”, Program 2: “Sexual Lives and Respectful Relationships”, Program 3: “Talking about sex and relationships: the views of young people with learning disabilities”, and Program 4: “Health, Safety & Sexuality Training for You & Me”.

Program 1: “Telling it like it is!”. The Telling It Like It Is (TILII) project is a values-based staff training program delivered by people with a learning disability. Black and Roberts [23] provide an independent evaluation of the pilot TILII program conducted over two years from 2005 to 2007. Participants of the program were required to have a learning disability, a desire to learn new things, like being in the company of others, and the ability to commit their time in a voluntary capacity. Recruitment was done through the network of the TILII Advisory Group and using a flyer distributed to partner groups and stakeholders. Nine people with a learning disability volunteered to become trainers. Two withdrew before the program began. Four male and three female participants completed the program, ranging in age from 24 to 41 years.

The program was facilitated by a person with social-work experience and split into two parts. In part one, participants with a learning disability were trained to become program trainers. They were consulted regarding the design of the program and spent time sharing their experiences of choice, rights, and respect, and participated in activities such as drawing, videorecording and role play, before undergoing formal training to increase their presentation skills. Initially the program to train the trainers was designed to be 12 half-day sessions, but this was extended to 20 sessions (60 h total) after revaluating the progress of participants part way through. Once they were proficient in delivering the presentation, it was advertised to local voluntary and statutory agencies. In part two of the program, the trainers delivered a total of 30 presentations to staff attendees, including social workers, service managers, healthcare workers, support workers, administrators, and students. Each presentation lasted for a duration of two hours.

Each trainer contributed to the presentation using Microsoft PowerPoint slides to illustrate the content clearly to the audience or recounted personal experiences through poems, photographs, and artwork. They explored themes such as privacy and wanting their own space, choice, and the ability to choose what to wear, where to go, and to have a romantic partner, respect and having equal rights, and they explained how difficult it was for people who cannot verbalise these choices. The attendees then split into smaller groups to complete workshop exercises facilitated by the trainers. At the end of the presentation attendees were invited to ask questions of the trainers. In total, 375 staff and members of the public attended a presentation.

Program 2: “Sexual Lives and Respectful Relationships”. Two sources described the “Sexual Lives and Respectful Relationships” program (SL&RR) [2, 24]. SL&RR is an abuse prevention program that uses peer education and life stories to acknowledge and prioritise the lived experience, sexual agency, and sexual rights of people with intellectual disability. The program was adapted from the Living Safer Sexual Lives (LSSL) program, an Australian education initiative developed in the early 2000’s. The LSSL program used the real-life stories of 25 individuals with an intellectual disability collected in prior research [7] to demonstrate sexuality and relationship education to staff, families, and individuals with an intellectual disability. However, adaptations of the program were completed to include a greater focus on respectful relationship education and violence prevention, to involve people with intellectual disability in the planning and delivery of the program, and to include a peer-education feature.

The program is delivered by eight networks across Australia. Participants include people with intellectual disability recruited from disability and mainstream sexuality and relationship services who are invited to undertake a 3 or 4-day training program to become peer-educators. The program includes four sessions, each focusing on a different theme: Talking about sexuality and relationships; Having rights and being safe; Respectful Relationships; Men and respectful relationships. Each training session uses a story to represent the session theme, includes facilitated discussion and has participants engage in an activity to demonstrate the learning objectives. Workshops are then facilitated by the peer-educators and attended by staff, families, and individuals with intellectual disability. The workshops explore key themes such as information about safe sex, sexual health, reproductive rights, decision making and privacy. Each workshop uses stories from the LSSL program to emphasise key messages and generate discussion. Thus far, the program has engaged more than 60 peer educators and 60 program partners. In addition, the program has been adapted to be presented to LGBTQIA + participants using more inclusive language and a greater focus on diverse sexuality [25]. Research by Marks et al. [25] reports that following the adapted program, some participants expressed an interest in becoming peer educators, resulting in welcome expansion of the peer-educator network.

Program 3: “Talking about sex and relationships: the views of young people with learning disabilities”. The “Talking about sex and relationships: the views of young people with learning disabilities” program, also called the “Sex and Relationships” program is a collaboration between CHANGE, a UK national organization focussed on the rights of people with a learning disability, and the Centre for Disability at Leeds University. The 3-year program was developed as a data collection tool to demonstrate the effect of using drama lessons to facilitate sex and relationship education, conducted from 2007 to 2010 [26]. A total of 20 participants with a learning disability aged 16 to 25 were recruited from schools and colleges to participate in the program. They were invited to attend weekly drama lessons facilitated by a volunteer with a learning disability and two drama coordinators for a period of 18 months. Drama experience was not a prerequisite to participation.

For the first 10 weeks, participants were assisted to develop skills in drama, after which they were introduced to the topic of sex and relationships and helped to act out scenarios and discuss the concepts presented. This included themes such as the different people who wanted relationships, were in relationships, wanted sex or information about sex and relationships, and educational topics including public and private spaces, body parts, sources of information, masturbation, periods, contraception, and abuse. Where appropriate, the class was separated into male and female groups to discuss sensitive topics.

Using the views and discussions put forward by the participants, a group of trained actors called the Rainbow Group (who also have learning disabilities) created a play about sex and relationships. The play was then performed to the participants. In this way, participants were able to see their own concepts performed back to them and to view the play from the perspective of an audience member. The participants then used the Rainbow Group’s play as inspiration to create their own play and at the end of the 18-month program had the opportunity to perform it.

Program 4: “Health, Safety & Sexuality Training for You & Me”. The “Health, Safety & Sexuality Training for You & Me” program is located at the Thomas Adventures in Lifelong Learning (TALL) Institute in Cincinnati, Ohio, USA. The program provides peer-to-peer safety and sexuality training for people with intellectual disability with the intention of decreasing participants vulnerability to abuse and consists of a training period where students were given the skills and resources to become peer-educators, followed by a series of workshops where the newly empowered peer-educators provide educational workshops for other people with intellectual disability. In her dissertation for the Doctor of Philosophy degree, Williams [27] described the program as a case study where 14 students, eight women and six men, completed the program in 2012. All participants were students of TALL.

The initial training period was conducted over three months and used a Film, Photography and Arts class and educational sessions with the program facilitator to present students with the curriculum. They covered topics such as vulnerability to abuse, types of abuse and safety planning, and students were given the opportunity to share their personal experiences. In its second year, the program was amended to also include professionally created skits acted out by the peer-to-peer trainers as a learning tool. The skits and personal stories were incorporated to create the safety and sexuality training presentations. The presentations were run by the peer-to-peer educators and a facilitator. They consisted of a 3-hour training program for other individuals with intellectual disability and were conducted at sheltered workshops, residential facilities, and other disability agencies.

Discussion

This scoping review aimed to identify how peer-education models are being used in sexuality and respectful relationship education for people with intellectual disability. It was apparent that very little research has been conducted looking at the combination of all three factors used as criteria for inclusion in this review: the use of peer-educator(s) (1) sexuality and/or respectful relationships education (2) for and by people with an intellectual disability (3). However, for the small number of studies or evaluations that have been conducted in this space, the results are optimistic and have positive implications for an alternative method of sexuality and relationship education for people with intellectual disability that puts them at the center of the design and delivery of programs.

Freire’s Pedagogy of the Oppressed [28] recognizes the potential of persons to shape their own education and advocate for their own rights. All programs reviewed align with Freire’s theory by including participants in the development and facilitation of the education model. Through shared experience and equitable transaction of knowledge the programs empower participants to champion for their right to equal education. All of the programs described herein also conform to the socio-political model of disability, where individuals with impairments are referred to as the experts of their own abilities and needs [29].

Both the SL&RR program [2] and the “Sex and Relationships” program [26] encountered the scenario of engaging participants from various cultural and minority groups. Garbutt [26] described the challenge of engaging participants from minority ethnic groups due to a dissonance between the content of the course and cultural and religious considerations. In comparison, Frawley and O’Shea [2] received positive feedback from participants that the SL&RR program allowed them to discuss topics that they would not have otherwise been able to discuss at home. The SL&RR program has also undergone multiple revisions, including an amendment to include people with an acquired brain injury. All revisions were completed in consultation with peer educators. The SL&RR program demonstrates how education can and should evolve to meet the needs of the target population and the potential for programs to evolve beyond their intended purpose.

The “Health, Safety & Sexuality Training for You & Me” program [27] and the “Sex and Relationships” programs [26] used drama as a communication and expression tool within the education process. The advantage of using drama is that it can be used by participants who have limited verbal or written abilities, enabling people with disability to express their ideas, experiences, and creativity [26, 30]. However, many of the program participants described physical and/or behavioural disabilities in addition to a learning disability [27]. This should be carefully considered in the design of any education program. For example, alternative activities may need to be made available where limited mobility or hearing is a factor for the participant [26, 27].

Three of the programs [2, 23, 24, 27] were designed so that people with an intellectual disability were empowered to discuss their experiences with people who do not have a disability. The program evaluations identified that a program about and presented by people with intellectual disability was a key factor to program success, and program benefits extended to people who do not have a disability, with participants reporting a greater understanding of the challenges and experiences of people with a disability. Black and Roberts [23] found that an overwhelming 98.3% of attendees found the program useful in their own work and quoted: “Very often carers and professionals ‘think’ they know what individuals want. It has highlighted that we all need to listen to people with a learning disability, to find out how they feel, what the issues are, and how we can help them to help themselves”. Black and Roberts [23] found that many attendees had underestimated the abilities of people with a learning disability and that the presentation changed this perception. The TILII program has since been expanded to other audiences outside of the social care sector and continues to break down barriers caused by misconceptions and stereotypes about people with learning disabilities [23].

Multiple sources [24, 27] identify that an ambitious and incredibly important intention of these education programs is to improve safety for people with intellectual disability through knowledge around correct and incorrect behaviour, signs, and types of abuse, and contribute to reducing the violent crime rate. Compared to the general population, research shows that women with intellectual disability are more likely to experience abuse [31], more likely to be sexually assaulted [32] and experience higher rates of unplanned pregnancies [33]. Additionally, men with intellectual disability have a higher rate of sexual offending [34] and have a high risk of poor sexual health including STI’s [35]. Further, low levels of sexual knowledge in people with intellectual disability is correlated with vulnerability to abuse [5]. The use of sex and relationship education to decrease vulnerability to and likelihood of abuse or offending is an established practice supported by researchers and practitioners [27, 36]. This is an incredible and worthwhile incentive to further explore the use of sex and relationship education programs for people with intellectual disability [27].

Future research. This scoping review was designed to describe the available literature rather than conduct a critique of the programs. Therefore, the review does not investigate the efficacy of program operation or outcomes. However, some differences exist between programs that should be acknowledged and further assessed in the future. Firstly, one of the primary program outcomes reported by these sources was an increase in confidence and communication skills for peer-educators [23, 26]. Garbutt [26] found that during training, it took one participant 24 sessions before they engaged with their peers, while at the two year follow up Black and Roberts [23] found that trainers still expressed an increase in confidence and competence due to the TILII program. These outcomes demonstrate the importance of building trust and confidence over time and allude to the robustness of potential personal changes in participants. However, the length of training provided by each program varied from 4 days [2, 24] to 18 months [26]. It would be interesting to explore how length of training impacts program outcomes in future.

Review limitations. There is a scarcity of peer reviewed research available to evidence the use of peer-educators in sexuality and/or respectful relationships education for people with an intellectual disability. Further, the heterogeneity of sources in this review makes it problematic to make comparison between programs or to critique the program outcomes. Upon assessment, it was found that some sources did not adequately detail their method of analysis or a theoretic framework for the choice of data collection strategy, where data collection was undertaken. Improved research practices will be essential to provide evidence of program efficacy in future in order to effect meaningful change in the experiences of people with intellectual disability undertaking sexuality and respectful relationship education.

Conclusions

The use of peer-education in the delivery of sexuality and respectful relationship education for people with an intellectual disability is an innovative and exciting concept that could effect widespread change in the way that education programs are developed. However, a substantial amount of research with thorough theoretical and methodological structure would greatly support this practice. This review highlights multiple approaches to program delivery and learnings from previous and ongoing programs which can be used by others to replicate and modify education models for people with intellectual disability. The sources included in this review feature authors who are pioneering this movement and the real life consequences for people with intellectual disability should not be underestimated in the persuit of better and more effective education models.