Romantic Relationships and Sexuality of People with Intellectual Disabilities: A Systematic Literature Review

Abstract

Sexuality is a central dimension of people’s lives, but it is often overlooked and neglected in relation to people with intellectual disabilities. This Systematic Literature Review investigates the perceptions, attitudes, and experiences of people with intellectual disabilities, their families and professionals about their sexual and romantic lives. Specific databases were searched (PubMed, EBSCO, SCOPUS, APA PsyArticles, Cochrane, and gray literature), and a methodological quality assessment was carried out according to the Joanna Briggs Institute, resulting in the inclusion of 21 articles, published between 2018 and 2023, which met the established criteria. The results show that sexuality is essential for people with intellectual disabilities. The studies show that these people seek intimate relationships, but are limited by social norms, lack of support and inadequate sexual education. This directly affects their emotional well-being and personal satisfaction. Health professionals and caregivers have divergent attitudes towards the sexuality of people with intellectual disabilities, facing obstacles in sexuality education. Parents face a dilemma between promoting independence and protecting themselves from risks, which influences their children’s emotional balance. This highlights the need for personalized approaches to sex education, attention to specific needs and effective communication between health professionals, caregivers and families, with the aim of strengthening self-esteem and autonomy. The results show that researchers should understand the impact of different parenting approaches on the emotional health of individuals with intellectual disabilities. Future research should include all stakeholders, enabling a wider range of perspectives and stakeholder involvement in the formulation, implementation, and evaluation of personalized educational programs.

Keywords

Intellectual disability romantic relationships sexuality perceptions and attitudes love experiences emotional well-being

Introduction

The development of sexuality is crucial for all individuals, representing a fundamental facet of personality that profoundly influences thoughts, emotions, actions and interactions, as well as having an impact on physical and mental health.¹ This universal right to the healthy expression of sexuality is essential for autonomy and personal fulfillment, and is recognized as an integral part of the adult experience.² For people with intellectual disabilities, exploring sexuality faces unique challenges. Existing literature tends to focus predominantly on sex education, reproductive health and contraception, with little inclusion in general studies.^3,4 There is a predominant tendency to consider them asexual, which results in social isolation and significant limitations in personal development.⁵

These misperceptions are reinforced by overprotective attitudes that underestimate the genuine interest of people with intellectual disabilities in sexuality and in forming intimate relationships.⁶ Despite this, studies show that many adults with intellectual disabilities desire and seek sexual relationships, although they often face significant barriers due to a lack of knowledge and support.^7,8

The lack of adequate guidance can lead to unsatisfactory or harmful sexual interactions, highlighting the urgent need for inclusive policies and guidelines that promote the autonomy and sexual well-being of this population.⁹ Despite efforts to improve the quality of life of people with intellectual disabilities, a significant gap persists in understanding the complexities of their sexuality, requiring a more in-depth and targeted approach.¹⁰

This systematic review aims to fill this gap by examining the perceptions, attitudes and experiences related to sexuality and romantic relationships among people with intellectual disabilities. By shedding light on these areas, it seeks not only to inform more effective strategies, but also to defend the rights and dignity of these people through more inclusive and person-centered policies.

Method

Type of Study

This study consists of a Systematic Literature Review with a predominantly qualitative approach. To this end, we used the methodological guidelines of the Joanna Briggs Institute.¹¹

Objectives

The general aim of this study is to identify the perceptions, attitudes, and experiences in romantic relationships and sexuality of people with intellectual disabilities.

Its specific objectives are:

Analyzing the perceptions of individuals with intellectual disabilities: Identifying the subjective perceptions of individuals with intellectual disabilities themselves about their romantic relationships and sexuality, exploring their personal experiences and perspectives.

Assessing the attitudes of professionals working with people with intellectual disabilities: Examining the attitudes and approaches of health professionals and other professionals who deal with people with intellectual disabilities in relation to sexuality, identifying the barriers experienced and the strategies adopted.

Explore the experiences and concerns of caregivers/families: Identify the experiences, concerns and perspectives of caregivers/family members in relation to romantic relationships and the sexuality of people with intellectual disabilities, as well as the perceived influence of these relationships on the well-being and mental health of the individuals in their care.

Research Question

The research question formulated using the PICO method is presented in Table 1.

Table 1.

PICO Question Formulation.

PICO Question
Participants	People with intellectual disabilities, caregivers, health professionals (doctors, nurses, psychologists, occupational therapists), institutional professionals (social workers, teachers, monitors, assistants).
Interventions	N/A
Comparisons	Variations in the perspectives and experiences of people with intellectual disabilities, families and professionals
Results	Comprehensive characterization of the perceptions, attitudes, experiences and needs related to the romantic and sexual relationships of people with intellectual disabilities by the population in question and their families and professionals

Thus, the PICO question guiding this RSL is:

⇒ How are the perceptions, attitudes, and experiences regarding romantic and sexual relationships of people with intellectual disabilities characterized?

Inclusion and Exclusion Criteria

Based on the research question, inclusion criteria were defined for the studies in this systematic literature review. The type of participants, the type of intervention and the type of study were taken into account to define the inclusion criteria for this study (Table 2).

Table 2.

Inclusion and Exclusion Criteria for This RSL.

Inclusion and Exclusion Criteria
	Inclusion Criteria	Exclusion Criteria
Participants	Adults over 18 People with mild to moderate intellectual disabilities Caregivers/family members of people with intellectual disabilities Health professionals (doctors, nurses, psychologists, sexologists), institutional professionals (social workers, teachers, monitors, assistants).	Studies with adolescents (under 18 years of age) People with severe to profound intellectual disabilities
Types of studies	Complete studies of qualitative, quantitative or mixed designs in which the qualitative results are accessible. Conducted with people with intellectual disabilities, caregivers/families or professionals, on how they perceive the romantic and sexual relationships of people with intellectual disabilities, and how they support them.	Incomplete studies; Secondary studies. Studies that deal with other dimensions of the lives of people with intellectual disabilities, other than sexuality and romantic relationships.
Publication date	Between 2018 and 2023	Studies published before 2018
Language	Studies published in English and Portuguese	Other languages
Access	Open access articles with full reading	Incomplete and restricted access articles

Study Location and Selection Process

The search plan was developed and implemented in November 2023, using databases to locate relevant studies. The protocol was registered at our research center (CIEP: Center for Research in Education and Psychology of the University of Évora). Keywords were defined according to MeSH, CINAHL Headings, and DeCS indexed descriptors. Table 3 details the databases and Boolean phrases used in the search strategy:

Table 3.

Search Strategy in Each Selected Database.

Databases	Boolean Sentences
PubMed Search date: November 14, 2023	(((intellectual AND disability)) AND ((attitudes OR beliefs OR experience))) AND (sexuality OR love))
EBSCO Search date: November 17, 2023	“intellectual disability” AND attitudes or beliefs or experiences AND “romantic relationship” AND sexuality
Scopus Search date: November 17, 2023	“intellectual disability” AND attitudes AND “romantic relationship” AND sexuality
APA PsyArticles Search date: November 15, 2023	Field: “intellectual disability” AND Any Field: sexuality
Cochrane Search date: November 15, 2023	“intellectual disability” in Title Abstract Keyword AND “sexuality” in Title Abstract Keyword

Figure 1.

Article Selection Process According to the PRISMA Methodology.¹²

Gray literature was searched in OpenGrey, the OAIster→ database, and RCAAP, with no relevant articles found. Figure 1 presents the PRISMA flowchart detailing each review phase until the final article selection.

A systematic search of five databases (PubMed, EBSCO, SCOPUS, APA PsyArticles, Cochrane) and gray literature yielded 395 records. After removing 164 duplicates, 231 studies remained. Title and abstract screening excluded 118, leaving 113. Of these, 38 were reviews and removed. The remaining 75 underwent full reading, with 54 excluded for not meeting all inclusion criteria. Exclusion reasons included irrelevance, inappropriate publication type, mismatched population or intervention, duplicates, restricted access, out-of-range publication date, poor methodology, ineligible language, or unrelated results. The final review included 21 studies, organized using Mendeley software.

Methodological Quality of Included Studies

The methodological quality analysis assessed study design and execution. Table 4 presents the Joanna Briggs Institute’s evidence levels and quality scores for quantitative studies, while Table 5 does the same for qualitative studies. All three authors participated in each stage of the review process, independently screened and reviewed results, reaching agreement through discussion without external arbitration.The 21 studies on perceptions, attitudes, and experiences of sexuality and intellectual disability span the USA, Spain, Canada, China, South Africa, Norway, Sweden, Croatia, Israel, the UK, Finland, the Netherlands, and Portugal, reflecting diverse cultural and scientific contexts. The Joanna Briggs Institute scores indicate predominantly “High” methodological quality, ranging from 6 to 10, suggesting strong research rigor. The prevalence of qualitative studies provides deep insights but may limit generalizability due to subjectivity, context specificity, and the lack of representative samples or broader perspectives.

Table 4.

Level of Evidence and Methodological Quality Score Quantitative Studies.

Joanna Briggs Institute Criteria	Gil-Llario et al.¹³	Gutiérrez-Bermejo et al.¹⁴	Buljevac et al.¹⁵	Kammes et al.¹⁶	Pinto & Morgado¹⁷	Wit et al.¹⁸	Gil-Llario et al.⁸
1. The criteria for inclusion in the sample were clearly defined.	x	x	x	x	x	x	x
2. The subjects of the study and the environment have been described in detail.	x	x	x	x	x	x	x
3. Exposure was measured in a valid and reliable way.	x	x	x	x	x	x	x
4. Objective and standardized criteria were used to measure the condition.	x	x	x	x	x	x
5. Confounding factors were identified					x	x
6. Strategies for dealing with confounding factors were indicated.		x			x	x	x
7. The results were measured validly and reliably.	x			x	x	x	x
8. Appropriate statistical analysis was used.	x	x	x	x	x	x	x
Level of evidence and total methodological quality score	6	7	6	6	8	8	6

Table 5.

Level of Evidence and Methodological Quality Score Qualitative Studies.

Joanna Briggs Institute Criteria	Agaronnik et al.¹⁹	Charpentier & Carter²⁰	Hole et al.²¹	Horner-Johnson et al.²²	Kahonde & Johns²³	Lam et al.²⁴	Platero & Lopez-Saez²⁵	Svae et al.²⁶	Wickström et al.²⁷	Martino²⁸	O’Shea. & Frawley²⁹	Neuman²⁹	Carito et al.¹⁰	Matila et al.³⁰
1. There is congruence between the philosophical perspective and the research methodology.	x	x	x	x	x	x	x	x	x		x	x	x	x
2. There is consistency between the research methodology and the research question or objectives.	x	x	x	x	x	x	x	x	x	x	x	x	x	x
3. There is congruence between the research methodology and the methods used for data collection.	x	x	x	x	x	x		x	x	x	x	x	x	x
4. There is consistency between the research methodology and the interpretation of the results.	x	x	x	x	x	x		x	x	x	x	x	x	x
5. There is a statement that locates the researcher culturally or theoretically.	x	x	x	x	x	x	x	x	x	x	x	x	x	x
6. The influence of the researcher on the research, and vice versa, is addressed.					x	x	x		x			x	x
7. Participants and their voices are adequately represented.				x				x					x
8. The research is ethical according to current criteria or, for recent studies, and there is evidence of ethical approval by an appropriate body.	x	x	x	x	x	x	x	x	x	x	x	x	x	x
9. The conclusions of the research report derive from the analysis or interpretation of the data.		x	x	x				x	x			x	x
10. Appropriate statistical analysis was used.	x	x		x	x	x	x	x	x	x	x	x	x	x
Level of evidence and total methodological quality score	7	8	8	9	8	8	6	10	9	6	7	9	10	7

Results

Characteristics of the Studies

After the methodological analysis, 21 articles published in English and Portuguese between 2018 and 2023 were included (Table 6).

Table 6.

Summary of Included Articles (n = 21).

Study Citation and Country	Type of Study, Participants, Objectives and Methodology	Main Conclusions	Recommendations	JBI Score
1. Agaronnik et al.¹⁹	The qualitative, descriptive study investigated the views of 20 doctors on the provision of care through interviews and focus groups that were recorded and transcribed in full.	The importance of direct and visual communication in medical consultations. Challenges in carrying out preventive examinations and differing opinions on reproductive rights.	There is a need to reflect on and change doctors’ entrenched and stigmatized attitudes towards the reproductive rights of women with disabilities.	7
2. Charpentier & Carter²⁰	The qualitative, descriptive study investigated experiences of romantic relationships with 2 members of staff, 30 residents with ID, 40 student residents and 9 parents. Thematic analysis was followed by the transcripts.	Participants value romantic relationships for companionship, facing challenges such as limited interpersonal skills and incomplete sex education.	Adults with intellectual disabilities have the right to love. With adequate support, they can have safe romantic and sexual relationships, requiring additional training.	8
3. Gil-Llario et al.¹³	The quantitative and longitudinal study analyzed the sexual behavior of 253 people with mild intellectual disabilities through questionnaires and specific statistical analyses.	Common practice of masturbation, followed by oral and vaginal sex; irregular use of condoms in riskier practices.	Self-efficacy and knowledge about HIV transmission are associated with greater condom use; limited knowledge requires informed health strategies.	6
4. Gutiérrez-Bermejo et al.¹⁴	A quantitative study evaluated a program to promote responsible and consensual sexual relations in 44 participants with ID, using statistical methods such as frequencies, chi-square, and SPSS analyses.	The analysis revealed diversity in the participants’ sexual behavior, with items revealing difficulty and variation in discrimination. The intervention had a positive impact, especially among the less familiar participants.	The program was effective in improving responsible attitudes about sexuality, including knowledge, feelings and behavioral intentions; future interventions should focus on effective behavioral changes.	7
5. Hole et al.²¹	The qualitative, descriptive study investigated barriers to knowledge about sexual health in 19 individuals with ID, using semi-structured interviews and qualitative analysis with NVivo 11.	The participants revealed difficulties in accessing information and debate on sexual health, wishing for an approach more centered on relationships, communication and pleasure.	The participants recommended inclusive sex education, taught by qualified professionals and accessible to people with disabilities, with an emphasis on representation and active participation.	8
6. Horner-Johnson et al.²²	The aim of this qualitative and descriptive study was to understand the barriers to contraceptive decision-making among 17 adult women with ID, using focus groups and content analysis of the transcripts.	Participants pointed to barriers such as inaccessible information formats, lack of details about the side effects of contraceptives and taboos about sex.	There is an urgent need to improve access to inclusive information and guarantee the participation of women with disabilities in decisions about contraception.	9
7. Kahonde & Johns²³	The qualitative study explored the knowledge and awareness of sexual violence in 27 adults with ID through focus group interviews and thematic analysis.	The data revealed love experiences, awareness and history of abuse and limited knowledge about reporting, especially among women with disabilities.	The debates highlighted peer support, crucial education and preventive interventions against sexual violence, promoting participatory research and specific theoretical frameworks.	8
8. Lam et al.²⁴	A qualitative study looking at the experiences and attitudes of 7 health professionals through semi-structured interviews and interpretative phenomenological analysis of the resulting transcripts.	Professionals recognize the normal sexuality of people with disabilities, but face significant institutional and family barriers.	In order to promote an evidence-based sex education protocol, it is crucial to better understand the attitudes and skills of health professionals.	8
9. Platero & Lopez-Saez²⁵	A qualitative, longitudinal study analyzed the reactions of 50 people with ID from the LGBT+ community through group discussions, using thematic and inductive analysis of the transcribed recordings.	During lockdown, people with ID faced restrictions, anxiety and insomnia, hiding their LGBT+ identities due to discrimination and seeking support online.	The Diversxs program adapted well online, offering vital support during the crisis, but some participants faced digital fatigue.	6
10. Svae et al.²⁶	A quantitative study explored the perceptions, experiences and knowledge about sexuality of 7 people with mild ID, using semi-structured interviews and thematic analysis.	Themes were identified: the importance of relationships, lack of sexual knowledge, failure to report sexual abuse and the resulting trauma, highlighting the challenges and support needs.	The results highlight the need for research into police support for victims with intellectual disabilities and the impact of post-abuse trauma.	10
11. Wickström et al.²⁷	A qualitative study aimed to understand the experiences and perceptions of sexual health and reproductive rights of 20 support professionals, through interviews and content analysis.	Participants accept young sexuality with ID, but face challenges with reproduction and parenting, asking for more support and interprofessional training.	The results can guide policies and guidelines to support professionals working with young people with intellectual disabilities.	9
12. Buljevac et al.¹⁵	A qualitative study investigated discrimination in 25 people with intellectual disabilities through interviews and interpretative phenomenological analysis of the transcribed data.	The results highlight harassment, economic disadvantages, denial of intimate relationships and social exclusion among people with ID.	The research highlights the need for more studies and ongoing training to promote rights and combat discrimination.	6
13. Kammes et al.¹⁶	A mixed-methods, descriptive study examined parental experiences of sexuality in 50 parents of people with intellectual disabilities, using quantitative and qualitative analysis.	Parents influence sex education and the expression of sexuality, adapting to the needs of their children with ID.	The results highlight gaps in sex education for adults with ID, suggesting directions for future research and interventions.	6
14. Martino³¹	A qualitative study explored the influence of religion on the intimate lives of 46 adults with intellectual disabilities through interviews.	The research highlighted the impact of religion on relationships, partner choices, guilt and post-abuse comfort and imposed restrictions.	The study highlights the lack of research into the influence of religion on the sex lives of people with disabilities.	6
15. O’Shea & Frawle²⁸	A qualitative study analyzed how 6 young women with ID relate to discourses of gender and intellectual disability through narrative and ethnography.	The narratives reveal that women with ID discreetly navigate relationships through platforms like Facebook, despite family restrictions.	The study highlights the agency of women with ID, integrating gender perspectives and personal valorization.	7
16. Neuman¹⁶	A qualitative study explored the challenges and perceptions of 20 couples with ID through qualitatively analyzed thematic interviews.	Conditions for starting relationships: attractiveness of the partner, support from third parties and special circumstances. Obvious differences between the sexes.	Professionals must empower people with ID to lead dignified lives, healthy relationships and respected personal choices.	9
17. Charitou et al.¹⁰	A qualitative study explored the perspectives of 9 mothers on the romantic and sexual lives of their children with ID through semi-structured interviews.	The results highlighted mothers’ concerns about sexual knowledge, consent and emotional support in relationships with children with disabilities.	Parents influence the romantic experiences of their children with disabilities through social expectations and parenting practices.	10
18. Matilla³⁰	A qualitative study explored the love needs of 7 young adults with mild intellectual disabilities through semi-structured interviews and qualitative analysis.	Young adults with intellectual disabilities described love as emotional, practical and acquired through personal experiences.	The study considered reliability through the effectiveness of the interviews in capturing authentic opinions about love.	7
19. Wit et al.¹⁸	A qualitative study looked at the sexual health of 9 people with mild ID through focus groups and statistical analysis.	83 statements were grouped into five groups, highlighting dating norms, relationship behaviors and sexual diversity.	Future research should adapt support and education for the sexual health of individuals with ID, involving family and staff.	8
20. Pinto & Morgado¹⁷	Quantitative study explored associations between sexuality and well-being in 86 adults with moderate ID.	Little knowledge about STIs, contraception and pregnancy, lack of sex education, difficulties in dealing with abuse.	The implementation of sex education programs is crucial to protect people with ID from sexual vulnerabilities.	8
21. Gil-Llario et al.⁸	A quantitative study analyzed the sexuality of 360 adults with ID using the CUSEXDI Questionnaire with detailed statistical analyses.	Most adults with ID have sexual experiences, seek information, but face challenges such as abuse.	The study underlines the ongoing need for educational programs focusing on a gender approach.	6

The studies included are mainly exploratory qualitative, using interviews and focus groups to investigate the sexuality and relationships of adults with intellectual disabilities. Some quantitative longitudinal or exploratory studies used adapted assessment instruments and questionnaires. They address reproductive rights, perceptions of romantic relationships, sexual behaviors, intervention programs, experiences of discrimination, sexual needs and personal well-being in various global contexts. The adaptation of the data collection methods highlights the effort to ensure the participation and understanding of participants with intellectual disabilities. The sample of the 21 studies analyzed includes 49 support and health professionals, 68 family members (predominantly mothers, only 4 male fathers) and 1026 people with mild or moderate intellectual disabilities, mostly with comorbidities and aged between 18 and 55. Of these, 230 are in a romantic relationship, 40 have formalized their union through marriage or nonmarital partnership, 11 have divorced, and 5 have had children. This data highlights the predominance of women in the role of carers who took part in the studies and shows that, despite the barriers, many people with intellectual disabilities develop emotional relationships.

Thematic Analysis

Analysis of the data presented in these different studies reveals the existence of several themes:

Perceptions, attitudes, and experiences of people with intellectual disabilities.^{8,13,14,15,17,18,20,21,23,25,26,28,29,30}

Perceptions, attitudes, and experiences of caregivers/families.^10,16

Perceptions, attitudes, and experiences of health professionals and institutions.^19,22,24,27

Relationship between perceptions, attitudes, and experiences in romantic relationships and sexuality with satisfaction, well-being and mental health.^{8,10,13–16,18–21,23–30}

The Perceptions, Attitudes, and Experiences of People with Intellectual Disabilities

The experience of people with intellectual disabilities in their romantic and sexual relationships is a vast and complex area, highlighting difficulties such as a lack of interpersonal skills and limited sex education.²⁰ They reveal a gap in the consistent use of condoms¹³ while proposing programs to promote responsible sexual relationships.¹⁴ They point out gaps in sex education, such as the failure to address sexual diversity.²¹ They address sexual violence, highlighting limited knowledge and fear of reporting.^23,26 They analyze the discrimination faced, including harassment and social exclusion.^15,25 Explore the influence of religion on intimate experiences,⁸ while investigating the impacts of discourses on gender and disability.²⁸ Underline the importance of love and emotional relationships.^29,30 Discuss the need for sex education and educational programs.^18,17,27

These studies underline the importance of promoting an inclusive understanding of the sexuality of people with intellectual disabilities and the urgency of effective educational approaches and intervention programs.

The Perceptions, Attitudes, and Experiences of Caregivers/Families

The role of parents in the sexual education of adults with intellectual disabilities is highlighted by adapting information as necessary and monitoring to avoid abuse, which can restrict sexual experiences.²⁰ They show that parents are the main sex educators.¹⁶ They reveal that mothers of adults with intellectual disabilities are concerned about their children’s understanding of intimacy and fear exploitation due to vulnerability.²⁰ Both studies highlight parents’ concern for the protection and vulnerability of adults with ID.^16,20 They stress the active role of parents in sex education¹⁶ while pointing out the lack of open dialog, which affects autonomy.²⁰ The studies underline the importance of open dialogues and respect for autonomy to promote a healthy understanding of sexuality in adults with intellectual disabilities.^16,20

The Perceptions, Attitudes, and Experiences of Health Professionals and Institutions

Challenges in communication and sexual health care for people with disabilities are highlighted due to a lack of preparation and understanding of reproductive rights.¹⁹ The need to improve access to information and the inclusion of women with intellectual disabilities in contraceptive decision-making is highlighted.²² It is evident that health professionals recognize the sexuality of people with disabilities, but face institutional barriers and resistance from parents.²⁴ Similar challenges are identified among caregivers and professionals, emphasizing the need for clear guidelines and interprofessional support.²⁷

They stress the importance of clear guidelines, adequate training and professional support to meet the sexual needs of people with intellectual disabilities.^24,27

Relationship Between Perceptions, Attitudes, and Experiences in Romantic Relationships and Sexuality with Satisfaction, Well-being, and Mental Health

Research reveals significant gaps in sex education for people with intellectual disabilities, indicating an urgent need for more inclusive and adapted programs.^18,21 They point to barriers in forming healthy relationships and vulnerability to sexual abuse, with a negative impact on the mental health of these individuals.^20,23,26,29 They highlight obstacles in seeking intimate relationships due to social norms and a lack of support, affecting emotional well-being.^28,30 They address discrimination that limits the exploration of sexuality and gender identity, contributing to emotional distress.^15,25 They offer varied perspectives on condom use and the effectiveness of interventions, showing the complexity of individual needs.^13,14,17 Investigate the religious influence on intimate experiences, highlighting the importance of considering these dimensions for well-being.²⁰ They highlight the challenges in addressing sexual health and reproductive rights due to communication barriers and limited sex education.^19,24,27 They indicate the need for clear guidelines and interprofessional collaboration, point to positive attitudes, but with challenges regarding privacy and contraception, which affect the mental health of individuals with intellectual disabilities.^19,27,24 They highlight parental concerns that directly influence the well-being and mental health of individuals with intellectual disabilities.^16,20 Emphasizes open discussions, points to ambiguity, suggesting variations in support and guidance, with an impact on emotional health and autonomy.^16,20 They underline the need for open dialogues, adequate training and inclusive policies to promote the mental health and well-being of people with intellectual disabilities in their sexual and romantic experiences.

Discussion

The included studies highlight the growing recognition of the importance of romantic relationships and sexuality for individuals with intellectual disabilities, emphasizing their well-being and quality of life. They explore multiple aspects and stress the need for greater understanding, inclusive education, and effective intervention programs, affirming sexuality as a fundamental right.

This systematic review has notable strengths, providing a broad overview of perceptions, attitudes, and experiences related to sexuality and romantic relationships among individuals with intellectual disabilities, caregivers, and support professionals. Most studies received a “High” methodological quality rating, indicating strong research rigor. The geographical and temporal diversity of the studies reflects evolving methodological approaches and the prevalence of qualitative research, which offers rich, contextualized insights into the experiences of individuals, families, and professionals. This approach highlights cultural and social variations, valuing the voice of people with intellectual disabilities, and fosters a more humanized, inclusive perspective on the topic.

However, some limitations should be noted. The restriction to studies in English and Portuguese, with open access and full-text availability, may have limited the research scope, excluding relevant studies in other languages or with restricted access. The focus solely on adults may also be a limitation, as romantic and sexual experiences often begin in adolescence.

The predominance of qualitative studies with small, non-random samples confined to specific social contexts limits the generalizability of findings. The lack of longitudinal studies and intervention evaluations is another gap, as such research could provide deeper insights into changes in romantic and sexual experiences over time and the effectiveness of support programs. Additionally, few studies integrate the perspectives of individuals, families, and professionals simultaneously, limiting a comprehensive, holistic understanding of romantic relationships and sexuality in this population.

Conclusions

The importance of sexuality and appropriate sex education for people with intellectual disabilities is undeniable. Studies show a complex and multifaceted reality regarding the perspective of people with intellectual disabilities on their sexuality and romantic relationships, and the views of professionals, caregivers and parents on this crucial topic.

The results indicate a clear aspiration for intimate and romantic connections on the part of individuals with intellectual disabilities, although this search is hampered by restrictive social norms, a lack of support and difficulties in navigating these relationships. The lack of inclusive and adapted sex education contributes to the gap in understanding relationships and intimacy, directly impacting the emotional well-being and personal satisfaction of these individuals. Additionally, discrimination and limitations imposed by social norms create a challenging environment to explore sexuality and gender identity, resulting in emotional distress and a negative impact on mental health.

Studies on the attitudes of health professionals and support workers in institutions towards the sexuality of individuals with intellectual disabilities show divergences, ranging from recognition of the importance to the obstacles faced in providing comprehensive sex education. Issues such as communication barriers, privacy, contraception, and reproductive issues are significant challenges due to hesitation and difficulty in finding appropriate approaches.

Parents of these individuals face a delicate dilemma between encouraging independence and protecting against risks, which directly affects the mental well-being of their children with intellectual disabilities. Variations in parental approaches, between being outspoken or adopting an ambiguous stance, suggest different impacts on the support and guidance of individuals with intellectual disabilities.

In summary, the results highlight the need for a more comprehensive understanding that allows for a holistic view of how people with ID experience love relationships and express sexuality, personalized and inclusive approaches to sex education, careful attention to the specific needs of each person with an intellectual disability and more effective communication between professionals and parents. Strategies aimed at strengthening self-esteem, respecting privacy and promoting autonomy will be key. Future research should prioritize an integrated approach that simultaneously involves the perspectives of people with ID, their families and support professionals, allowing for a genuine vision and richer, more comprehensive understanding by all stakeholders of relational and affective dynamics, as well as enabling the development of educational and health programs that are more tailored to the specific needs of this group. Studies with larger samples, including adolescents, longitudinal analyses and quantitative investigations are essential to evaluate the effectiveness of interventions and understand the long-term impacts of these strategies.

The practical implications of this review highlight the potential to influence public policies, clinical practices and educational programs aimed at promoting the well-being and inclusion of people with ID. From a humanistic perspective, it is essential to empower these people to exercise their autonomy, experience healthy emotional relationships and have access to a dignified, supported, and fulfilling life in all its facets. By exploring an area that is still sensitive and little addressed, this article invites researchers to delve deeper into this topic, contributing to the construction of more informed and transformative interventions.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical Approval

Ethical permission was not applicable for this article, as this is a review article drafted from various research articles and not from patients directly.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Informed Consent

Consent was not applicable, as this is a review article compiled from various research articles and guidelines and not from patients directly.

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