Abstract
The sexual agency of youth with physical disabilities is often unacknowledged and underdeveloped. Concerned adults often make decisions about sexual and reproductive care for youth with physical disabilities to protect them from adverse outcomes, such as sexual abuse. Additionally, sexuality resources available to youth with physical disabilities are often not specific to their disability, which may limit their ability to foster positive sexuality. We conducted a systematic review to understand the knowledge created through qualitative inquiry on the sexuality of youth with physical disabilities. We considered qualitative or mixed-method studies published between 1999 and 2021. The electronic databases MEDLINE, PsycINFO, CINAHL, Dissertations and Theses Global were searched, as well as the DuckDuckGo search engine for grey literature. Nineteen peer-reviewed studies and 10 grey literature sources were included. Six themes were identified: (1) Sexuality resources did not adequately support the sexual rights of youth with physical disabilities, (2) Parents of youth with disabilities feared their child was sexually vulnerable, (3) Many healthcare providers felt unprepared to discuss sexuality with youth with disabilities, (4) Youth with physical disabilities experienced discrimination related to their sexuality, (5) The sexual agency of youth with physical disabilities was often unrecognized, and (6) Youth with physical disabilities had diverse sexual experiences and identities. This review revealed the complex, intersecting, and diverse experiences of youth with physical disabilities when it comes to their sexuality. Recommendations call on parents/caregivers, healthcare providers, researchers, and society at large, to combat systemic misconceptions and recognize the sexual agency of youth with physical disabilities.
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Notes
We acknowledge that people with disabilities and disability communities have different preferences and justifications for using person-first (youth with physical disabilities) and identity-first language (physically disabled youth). We used person-first language in this review for consistency and because it is preferred by our study collaborators who are people living with disabilities.
We acknowledge that some youth with physical disabilities identify as asexual, and these findings should not detract from the validity of their identities and experiences.
Please note that the perspectives of healthcare providers are predominantly expressed in this section as there was only one study that included teachers as participants. However, a few youth with physical disabilities spoke about their teachers as well.
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Acknowledgements
We acknowledge Vincci Lui, Public Health Librarian at the University of Toronto Gerstein Library for her assistance in the database search. We acknowledge the youth collaborator and study consultants, who are people living with disabilities, that help guide Madison L Giles’ doctoral research.
Funding
Madison L Giles is funded by the Vanier Canada Graduate Scholarship with the Social Sciences and Humanities Research Council (#416498) and the Connaught PhD for Public Impact Fellowship.
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All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by MLG, CJ-P, ACM, and DG. The first draft of the manuscript was written by MG and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Appendices
Appendix
Appendix 1: Search strategy
MEDLINE (OVID)
Search terms |
|---|
sexualit*.tw,kf. OR Sexuality/ OR sexual subject*.tw,kf OR (sexual adj2 (health or well*)).tw,kf. OR Sexual Health/ OR LGB*.tw,kf. OR "Sexual and Gender Minorities"/ OR sexual orientation*.tw,kf. OR (sexual adj2 (behaviour* or behavior*)).tw,kf. OR coitus/ or courtship/ or masturbation/ or sex work/ or safe sex/ or sexual abstinence/ or sexual harassment/ or sexuality/ or unsafe sex/ OR (gender adj2 (identit* or express*)).tw,kf. OR Gender Identity/ OR sexual abuse*.tw,kf. OR Child Abuse, Sexual/ OR psychosexual behavio*.tw,kf. OR sexual health education.tw,kf. OR Sex Education/ OR sex education.tw,kf. OR sex ed.tw,kf. OR (sex* adj2 positiv*).tw,kf. OR (sexual adj3 (develop* or harassment or partner* or dysfunction*, function* or attitude* or resilienc*)).tw,kf. OR sexual maturation/ OR puberty/ OR Sexual Harassment/ OR Sexual Partners/ Sexual Dysfunctions, Psychological/ sexting.tw,kf. OR sexual reproduction.tw,kf |
((physical* or mobilit*) adj3 (disabilit* or disabled or impairment*)).tw,kf. OR amputees/ OR disabled children/ OR para-athletes/ OR persons with hearing impairments/ OR visually impaired persons/ OR (disabled adj2 (person or people* or population* or group* or communit* or child* or youth* or adolescen* or "young people")).tw,kf. OR wheelchair.tw,kf. OR special need*.tw,kf. OR spina bifida.tw,kf. OR Spinal Dysraphism/ OR cystic fibrosis.tw,kf. OR Cystic Fibrosis/ OR cerebral palsy.tw,kf. OR Cerebral Palsy/ OR spinal cord injur*.tw,kf. OR Spinal Cord Injuries/ OR musculoskeletal disease*.tw,kf. OR Musculoskeletal Diseases/ OR multiple sclerosis.tw,kf. OR Multiple Sclerosis/ OR ((acquired or traumatic) adj2 brain injur*).tw,kf. OR Brain Injuries/ OR muscular dystroph*.tw,kf. OR Muscular Dystrophies/ OR amputee*.tw,kf. OR Amputees/OR scoliosis.tw,kf. OR Scoliosis/ OR neurological disorder*.tw,kf. OR Nervous System Diseases/ OR (little adj2 (person or people*)).tw,kf. OR Dwarfism/ OR dwarf*.tw,kf |
(teen* or youth* or adolescen* or juvenile* or (young adj2 (adult* or person* or individual* or people* or population* or man or men or wom#n)) OR youngster* OR first-grader* OR second-grader* OR third-grader* OR fourth-grader* OR fifth-grader* OR sixth-grader* OR seventh-grader* OR highschool* OR college* OR ((secondary or high*) adj2 (school* or education))).tw,kf. OR OR Adolescent/OR Young Adult/ |
((("semi-structured" or semistructured or unstructured or informal or "in-depth" or guide* or structured) and (interview* or discussion* or questionnaire*)) OR ("focus group" or "focus groups" or qualitative or ethnograph* or fieldwork or "field work" or "key informant")).tw,kf.OR qualitative research/OR Interviews as Topic/ OR Narration/ OR Focus Groups/ OR personal narratives as topic/ OR (art* adj3 (research or method*)).tw,kf |
APA PsychINFO (OVID)
Search terms |
|---|
sexualit*.tw,id. OR sexuality/ OR sexual subject*.tw,id. OR (sexual adj2 (health or well*)).tw,id. OR sexual health/ OR LGB*.tw,id. OR LGBT/ OR sexual minority groups/ OR sexual orientation*.tw,id. OR (sexual adj2 (behaviour* or behavior*)).tw,id. OR cybersex/ OR "erection (penis)"/ OR human courtship/ OR hypersexuality/ OR infidelity/ OR masturbation/ OR orgasm/ OR pornography/ OR promiscuity/ OR safe sex/ OR seduction/ OR sex/ OR sex roles/ OR sex work/ OR sexual abstinence/ OR sexual arousal/ OR sexual health/ OR sexual orientation/ OR sexual risk taking/ OR virginity/ OR affection/ OR asexuality/ OR professional client sexual relations/ OR romance/ OR sexual attitudes/ OR sexual attraction/ OR sexual development/ OR sexual fantasy/ OR sexual partners/ OR sexual satisfaction/ OR sexualization/ OR sociosexual orientation/ OR (gender adj2 (identit* or express*)).tw,id. OR gender identity/ OR sexual abuse*.tw,id. OR incest/ OR rape/ OR anatomically detailed dolls/ OR child abuse/ OR domestic violence/ OR intimate partner violence/ OR patient abuse/ OR pedophilia/ OR professional client sexual relations/ OR sexual harassment/ OR psychosexual behavio*.tw,id. OR sexual health education.tw,id. OR sex education/ OR sexual health/ OR sex ed.tw,id. OR (sex* adj2 positiv*).tw,id. OR (sexual adj3 (develop* or harassment or partner* or dysfunction*, function* or attitude* or resilienc*)).tw,id. OR sexual development/ OR puberty/ OR sexual partners/ OR sexting.tw,id. OR physiological processes/ OR reproductive health/ |
((physical* or mobilit*) adj3 (disabilit* or disabled or impairment*)).tw,id. OR "physical disabilities (attitudes toward)"/ OR (disabled adj2 (person or people* or population* or group* or communit* or child* or youth* or adolescen* or "young people")).tw,id.OR wheelchair.tw,id. OR mobility aids/ OR special need*.tw,id. OR special education/ OR individual education programs/ OR physical disorders/ OR spina bifida.tw,id. OR spina bifida/ OR cystic fibrosis.tw,id. OR cystic fibrosis/ OR cerebral palsy.tw,id. OR cerebral palsy/ OR spinal cord injur*.tw,id. OR spinal cord injuries/ OR musculoskeletal disease*.tw,id. OR musculoskeletal disorders/ OR multiple sclerosis.tw,id. OR multiple sclerosis/ OR ((acquired or traumatic) adj2 brain injur*).tw,id. OR traumatic brain injury/ muscular dystroph*.tw,id. OR muscular dystrophy/ OR amputee*.tw,id. OR scoliosis.tw,id. OR neurological disorder*.tw,id. OR nervous system disorders/ OR (little adj2 (person or people*)).tw,id. OR Dwarf*.tw,id |
(teen* or youth* or adolescen* or juvenile* or (young adj2 (adult* or person* or individual* or people* or population* or man or men or wom#n)) OR youngster* OR first-grader* OR second-grader* OR third-grader* OR fourth-grader* OR fifth-grader* OR sixth-grader* OR seventh-grader* OR highschool* or college* OR ((secondary or high*) adj2 (school* or education))).tw,id. OR adolescent development/ OR adolescent attitudes/ OR adolescent behavior/ OR (adolescence 13 17 yrs or young adulthood 18 29 yrs).ag |
((("semi-structured" or semistructured or unstructured or informal or "in-depth" or guide* or structured) and (interview* or discussion* or questionnaire*)) OR ("focus group" or "focus groups" or qualitative or ethnograph* or fieldwork or "field work" or "key informant")).tw,id. OR qualitative methods/ OR data collection/ OR focus group interview/ OR semi-structured interview/ OR interpretative phenomenological analysis/ OR narrative analysis/ OR participant observation/ OR thematic analysis/ OR (art* adj3 (research or method*)).tw,id |
CINAHL (EBSCO)
Search terms |
|---|
TI (sexuality* OR "sexual subject*" OR (sexual N2 (health OR well*)) OR LBGT* OR "sexual orientation*" OR "sexual and gender minorit*" OR (gender N2 (identity OR expression OR "non-binary")) OR (sexual N3 (behavio* OR attitude* OR development* OR harassment OR abuse OR "child abuse" OR partner* OR dysfunction* OR function*)) OR puberty OR "psychosexual behavio*" OR "sexual health education" OR "sex education" OR "sex ed" OR (sex* N2 positiv*) OR "sexual resilienc*" OR "sexting" OR "sexual reproduction")) OR ( AB ((sexualit* OR "sexual subject*" OR (sexual NEAR/4 /2 (health OR well*)) OR LBGT* OR "sexual orientation*" OR "sexual and gender minorit*" OR (gender NEAR/4 /2 (identity OR expression OR "non-binary")) OR (sexual NEAR/4 /3 (behavio* OR attitude* OR development* OR harassment OR abuse OR "child abuse" OR partner* OR dysfunction* OR function*)) OR puberty OR "psychosexual behavio*" OR "sexual health education" OR "sex education" OR "sex ed" OR (sex* NEAR/4 /2 positiv*) OR "sexual resilienc*" OR "sexting" OR "sexual reproduction")) OR (MH "Sexual Behavior") OR (MH "Sexual Orientation") OR (MH "Sexual Partners") OR (MH "Sexual Satisfaction") OR (MH "Sexual and Gender Minorities") OR (MH "Child Abuse, Sexual") OR (MH "Sex Education") OR (MH "Puberty") |
TI (((physical* OR mobility) N2 (diabilit* OR disabled OR impairment*)) OR wheelchair OR "mobility device*" OR "special need*" OR "spina bifida" OR "cystic fibrosis" OR "cerebral palsy" OR "spinal cord injur*" OR "musculoskeltal disease*" OR "multiple sclerosis" OR ((acquired OR traumatic) N2 "brain injur*") OR "muscular dystroph*" OR amputee* OR scoliosis OR "neurological disorder*" OR (little N2 (person OR people*)) OR dwarf*)) OR ( AB (((physical* OR mobility) N2 (diabilit* OR disabled OR impairment*)) OR wheelchair OR "mobility device*" OR "special need*" OR "spina bifida" OR "cystic fibrosis" OR "cerebral palsy" OR "spinal cord injur*" OR "musculoskeltal disease*" OR "multiple sclerosis" OR ((acquired OR traumatic) N2 "brain injur*") OR "muscular dystroph*" OR amputee* OR scoliosis OR "neurological disorder*" OR (little N2 (person OR people*)) OR dwarf*)) OR (MH "Child, Disabled") OR (MH "Students, Disabled") OR (MH "Spina Bifida") OR (MH "Cerebral Palsy") OR (MH "Cystic Fibrosis") OR (MH "Spinal Cord Injuries") OR (MH "Multiple Sclerosis") OR (MH "Muscular Dystrophy") OR (MH "Amputees") |
TI (teen* OR youth* OR adolescen* OR juvenile* OR (young N3 (adult* OR person* OR individual* OR people* OR population* OR man OR men OR woman OR women)) OR youngster* OR "first-grader*" OR "second-grader*" OR "third-grader*" OR "fourth-grader*" OR "fifth-grader*" OR "sixth-grader*" OR "seventh-grader*" OR highschool* OR college* OR ((public OR secondary OR high*) N3 (school* OR education)))) OR ( AB (teen* OR youth* OR adolescen* OR juvenile* OR (young N3 (adult* OR person* OR individual* OR people* OR population* OR man OR men OR woman OR women)) OR youngster* OR "first-grader*" OR "second-grader*" OR "third-grader*" OR "fourth-grader*" OR "fifth-grader*" OR "sixth-grader*" OR "seventh-grader*" OR highschool* OR college* OR ((public OR secondary OR high*) N3 (school* OR education)))) OR (MH "Adolescence") OR (MH “Young Adult”) |
TI (("semi-structured" OR semistructured OR unstructured OR informal OR "in-depth" OR guide OR structured) AND (interview OR questionnaire OR "focus group*")) OR (qualitative OR ethnography OR fieldwork OR "field work" OR "key informant" OR "qualitative research")) OR (art* N3 (research OR method* OR methodolog*)) OR AB ((("semi-structured" OR semistructured OR unstructured OR informal OR "in-depth" OR guide OR structured) AND (interview OR questionnaire OR "focus group*")) OR (qualitative OR ethnography OR fieldwork OR "field work" OR "key informant" OR "qualitative research")) OR (art* N3 (research OR method* OR methodolog*)) OR (MH "Qualitative Studies") OR (MH "Focus Groups") OR (MH "Interviews") OR (MH "Narratives") |
Dissertations and Theses Global (ProQuest)
Search terms |
|---|
sexualit*.tw,id OR "sexual subject*".tw,id OR sexualit*.tw,id OR ("sexual subject*".tw,id) OR ((sexual adj2 (health or well*)).tw,id) OR LGB*.tw,id OR "sexual orientation*".tw,id OR ((sexual adj2 (behaviour* or behavior*)).tw,id) OR ((gender adj2 (identit* or express*)).tw,id) OR (sexual abuse*.tw,id) OR (psychosexual behavio*.tw,id) OR (sexual health education.tw,id) OR "sex ed".tw,id OR ((sex* adj2 positiv*).tw,id) OR ((sexual adj3 (develop* or harassment or partner* or dysfunction*, function* or attitude* or resilienc*)).tw,id) OR sexting.tw,id OR mainsubject.Exact("sexuality") OR mainsubject.Exact("sexual health") OR mainsubject.Exact("lgbtq students" OR "lgbtq community" OR "lgbtq people") OR mainsubject.Exact("homosexuality" OR "sexual disorders" OR "sexual health" OR "sex discrimination" OR "sexual intercourse" OR "sexual orientation" OR "child sexual abuse" OR "sexual harassment" OR "heterosexuality" OR "bisexuality" OR "sex education" OR "sexual behavior" OR "sex roles" OR "asexuality" OR "sexual orientation discrimination" OR "sexual consent" OR "sexism" OR "disorders of sex development" OR "sexually transmitted diseases—std”) OR mainsubject.Exact("gender identity") OR mainsubject.Exact("puberty") |
(((physical* or mobilit*) adj3 (disabilit* or disabled or impairment*)).tw,id) OR ((disabled adj2 (person or people* or population* or group* or communit* or child* or youth* or adolescen* or "young people")).tw,id) OR wheelchairs.tw,id OR "mobility aid*".tw,id OR (special need*.tw,id) OR "physical disorder*".tw,id OR (spina bifida.tw,id) OR (cystic fibrosis.tw,id) OR (cerebral palsy.tw,id) OR (spinal cord injur*.tw,id)727 (musculoskeletal disease*.tw,id) OR "multiple sclerosis".tw,id OR (((acquired or traumatic) adj2 brain injur*).tw,id) OR "muscular dystroph*".tw,id OR amputee*.tw,id OR scoliosis.tw,id OR (neurological disorder*.tw,id) OR ((little adj2 (person or people*)).tw,id) OR Dwarf*.tw,id4562 mainsubject.Exact("wheelchairs")76 mainsubject.Exact("spina bifida")53 mainsubject.Exact("cerebral palsy")232 mainsubject.Exact("spinal cord injuries")212 mainsubject.Exact("multiple sclerosis")321 mainsubject.Exact("muscular dystrophy")86 |
((teen* or youth* or adolescen* or juvenile* or (young adj2 (adult* or person* or individual* or people* or population* or man or men or wom#n)) OR youngster* OR "first-grader*" OR "second-grader*" OR "third-grader*" OR "fourth-grader*" OR "fifth-grader*" OR "sixth-grader*" OR "seventh-grader*" OR highschool* OR college* OR ((secondary or high*) adj2 (school* or education))).tw,id) OR ((adolescence 13 17 yrs or young adulthood 18 29 yrs).ag) OR mainsubject.Exact("youth") OR mainsubject.Exact("adolescents") |
((("semi-structured" or semistructured or unstructured or informal or "in-depth" or guide* or structured) and (interview* or discussion* or questionnaire*)) OR ("focus group" or "focus groups" or qualitative or ethnograph* or fieldwork or "field work" or "key informant")).tw,id. OR qualitative methods/ OR data collection/ OR focus group interview/ OR semi-structured interview/ OR interpretative phenomenological analysis/ OR narrative analysis/ OR participant observation/ OR thematic analysis/ OR (art* adj3 (research or method*)).tw,id |
DuckDuckGo
Search terms | |
|---|---|
Sexuality + physical disability + youth |
Appendix 2: Critical appraisal of eligible peer-reviewed studies
Study | Q1 | Q2 | Q3 | Q4 | Q5 | Q6 | Q7 | Q8 | Q9 | Q10 | Total criteria met |
|---|---|---|---|---|---|---|---|---|---|---|---|
Akre, Light, Sherman, Polvien & Rich | Y | Y | N | Y | Y | N | N | Y | Y | Y | 7/10 |
Bahner | Y | Y | Y | Y | Y | N | N | Y | Y | Y | 8/10 |
Bollinger & Cook | N | Y | Y | N | Y | Y | Y | Y | Y | Y | 8/10 |
Chappell | Y | Y | Y | Y | Y | N | Y | Y | Y | Y | 9/10 |
Earle | N | N | Y | N | N | N | N | Y | N | Y | 3/10 |
East & Orchard | Y | Y | Y | Y | Y | N | N | Y | Y | Y | 8/10 |
East & Orchard | Y | Y | Y | Y | Y | N | N | Y | Y | Y | 8/10 |
Gray et al | N | Y | Y | Y | Y | N | N | Y | Y | Y | 7/10 |
Haegele, Yessick & Zhu | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | 10/10 |
Kazmerski et al | N | Y | Y | Y | Y | N | N | Y | Y | Y | 7/10 |
Kupfert Heller et al | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | 10/10 |
Mills | Y | Y | Y | Y | Y | N | N | Y | Y | Y | 8/10 |
Secor-Turner, McMorris & Scal | N | Y | Y | Y | Y | N | N | Y | Y | Y | 7/10 |
Shpigelman & Vorobioff | Y | Y | Y | Y | Y | N | N | Y | Y | Y | 8/10 |
Streur et al | Y | Y | Y | Y | Y | Y | N | Y | Y | Y | 9/10 |
van Amsterdam, Knoppers & Johnman | Y | Y | Y | Y | N | Y | Y | Y | Y | Y | 9/10 |
Wazakili, Mpofu & Devlieger | N | Y | Y | Y | Y | Y | N | Y | Y | Y | 8/10 |
Willis, Miller & Wyn | N | Y | Y | Y | Y | N | N | Y | Y | Y | 7/10 |
Zamboni | N | Y | Y | Y | Y | N | N | Y | Y | Y | 7/10 |
Study totals | 11/19 | 18/19 | 18/19 | 17/19 | 17/19 | 6/19 | 5/19 | 19/19 | 18/19 | 19/19 |
Appendix 3: Characteristics of included peer-reviewed studies
Author(s) | Methodology | Method | Participants | Phenomena of interest | Author conclusions |
|---|---|---|---|---|---|
Akre, Light, Sherman, Polvien & Rich | Grounded theory | Visual narratives/Video Intervention- Prevention Assessment (VIA) | 14 participants aged 13–28 years old with spina bifida | Sexual knowledge and concerns and needs of youth with spina bifida | Youth with spina bifida have shared concerns, questions and challenges regarding sexuality. Youth wanted sexuality information, specifically from their physicians but were not receiving it, leaving gaps in their sexual knowledge. Healthcare providers can help address this gap and help empower youth with spina bifida to make informed decisions about their sexuality |
Bahner | Critical disability studies and crip theory | Interviews and focus groups | 6 young people with mobility impairments aged 18 and 4 college staff | Sexuality and relationship education for young people with mobility impairments | The student participants (young people with mobility impairments) have additional concerns related to sexuality and relationship education, including how to handle de-sexualising attitudes, possible sexual practices, and how reliance on assistance impacts upon privacy. The student’s experienced disablist and heteronormative practices, resulting in feeling like their sexuality challenges were ‘personal shortcomings’. The authors present cripistemologies to disrupt take for granted dis/ability and sexuality divides |
Bollinger & Cook | Critical disability studies | Peer research using in-depth interviewers | 5 young people living with congenital physical aged 21–25 | The experiences of sexuality education for young people living with congenital physical impairments in mainstream schools in New Zealand | Sexuality education has failed to support the creation of a positive disabled identity for young people with congenital impairments. The absence of representations of disability in school sexuality education has a negative impact on young people’s negotiation of disability as part of their sexuality and sexual experiences. The authors recommend providing young people with individual disability specific sexuality information through the disability community and the medical profession and ensure representation of people living with impairments and other diverse groups in all school sexuality education |
Chappell | Participatory action research | Interviews and focus groups | 22 Zulu-speaking youth with physical and visual disabilities aged 15–20 | Youth with physical and visual disabilities understandings of love and relationships in constructing their sexual identities | Young people with disabilities are similar to other non-disabled youth in the way they construct their sexual identities. The young participants constructed discursive truths surrounding disability, culture and gender through their discussions of love and relationships. The authors argue that the sexual identities of young people with physical and visual disabilities actually emerge within the intersectionality of identity discourses |
Earle | Feminism | In-depth interviews | 11 participants – 6 students with physical or sensory impairments aged 18–52 and 3 personal assistants aged 21–24 | The way disabled students and personal assistants attempt to negotiate the moral boundaries surrounding facilitated sex | Disabled students define their sexuality as a `need’, but personal assistants are more inclined to define is as a `want’ and conflate physical impairment with either asexuality or a limited potential for sexual activity. The authors suggesting that the issue of facilitated sex is morally complex, but the sexual needs of disabled people are more likely to be met if the issues of sexuality and facilitated sex can be discussed and negotiated, in a frank and open manner |
East & Orchard | Qualitative constructivism and sexual citizenship and Goffman’s theory of stigma | In-depth interviews and focus groups | 12 participants—4 youth with physical disabilities aged 15–20, 4 parents and 4 healthcare providers | Experiences, barriers and challenges associated with sex education for youth with physical disabilities from the perspectives of young people themselves, their parents and the health professionals who work with them | Parents, educators and health professionals to place the responsibility of delivering sex education to young people with physical disabilities on someone else who they believe to be more appropriately qualified to handle these types of situations. As a result, the findings illustrate that adolescents with physical disabilities do not always receive the necessary combination of comprehensive sex education within school environments, specialized information from health professionals, and informal sex education from family and peers that they require in order to gain the knowledge and skills needed to understand their own sexual capabilities and make informed decisions about their sexual health and intimate relationships |
East & Orchard | None stated but used sexual citizenship and Goffman’s theory of stigma | Semi-structured interviews and focus groups | 4 youth with cerebral palsy or spina bifida aged 15–20 | The development and challenges associated with emergent sexuality, identity formation, and self-image among Canadian adolescents with physical disabilities | Youth with physical disabilities face the same challenges related to identity, self-image, and social acceptance as their able-bodied peers. However, for adolescents with physical disabilities, many of these pertinent issues are often ignored or overlooked by the adults in their lives. The authors suggest to hear from youth who have physical limitations about the significant aspects of their psychosocial development in order to fill in the current knowledge gaps and widespread societal misconceptions related to these issues, but it also help to respect and legitimize the sexual and emotional needs of young people living with physical disabilities |
Gray et al | Phenomenology | In-depth interviews | 9 parents of young females who had combined diagnoses of cerebral palsy and intellectual disability | The experiences of parents of young females with disabilities at the onset of puberty | There was marked variation in parental perception of the significance of puberty for their daughters. Families often learned about reproductive health from informal social networks. Although families acknowledged the need for sexual abuse screening, there was little consensus about how to do it, and most denied that their own daughter could ever be abused. The authors report that parents of young females with CP and intellectual disability have diverse reproductive health beliefs that healthcare providers must explore in order to provide appropriate recommendations for management of puberty |
Haegele, Yessick & Zhu | None stated but used an intersectional approach | Interviews and reflective field notes | 8 young women with visual impairments aged 21–30 | The embodied experiences of individuals identifying as female and as having a visual impairment in school-based physical education | Participants reported limited participation in physical education activities and discussed the influence of their disability and gender on their participation. The participants expressed frustration with gendered expectations, which were clearly influenced by their physical educators’ understanding of “common sense” gender ideals. They also reflected on the complex and complicated nature of what they believed constructed their physical educators’ low expectations of their performance. These low expectations were reproduced by peers and may have contributed to their experiences of being bullied during physical education. The authors state that multiple identities (femaleness, visual impairment) of young women with visual impairments influenced their embodied and gendered experiences, resulting in disadvantages in physical education contexts |
Kazmerski et al | None stated | In-depth interviews | 38 participants—22 young women with cystic fibrosis aged 18–30 and 16 cystic fibrosis program directors | The attitudes, preferences, and experiences of patients with cystic fibrosis and cystic fibrosis providers toward sexual and reproductive healthcare | Both patients and providers recognize the importance of sexual and reproductive health care, discomfort as a barrier to sexual and reproductive health care and the need for educational resources and provider training to improve care. Providers highlighted the lack of standardization around sexual and reproductive health care. Patients desired sexual and reproductive health educational resources coupled with early discussions initiated by their provider |
Kupfert Heller et al | Phenomenology | Semi-structured interviews | 11 young people with spina bifida aged 16–25 years | How young people with spina bifida think about and discuss sexuality with their sexual and romantic partners in the context of their disability | Participants had mixed views on the importance of disclosing their disability to partners. While some participants strongly believed that their disability was important to share with partners, others worried that potential partners would focus on the disability rather than the person. Participants reported challenges about the timing of disclosure, lack of confidence in their abilities to express their sexual needs, and fears of rejection. After disclosure, however, participants often experienced increased confidence in themselves and their relationships. Participants identified a lack of SB-specific sexual education and a desire to learn more from their health care providers. The authors emphasize the importance of empowering young people to become more confident talking about their disability, especially in the context of sexual and romantic relationships. Being able to discuss their abilities, needs and desires could potentially facilitate the development of healthy relationships during their transition to adulthood |
Mills | Not stated but used Social Cognitive Theory | In-depth interviews | 25 deaf participants aged 15–19 years | The knowledge and experiences of deaf adolescents in a residential school in Ghana regarding sexual and reproductive health | Some of the participants reported abstaining from sex despite pressure from peers, others disclosed that they had sexual experiences, both consensual and non-consensual. Sexual and reproductive health behaviors were influenced by participants’ personal and environmental factors. Participants mentioned talking to teachers, peers, health professionals, parents and siblings about their sexual and reproductive health issues, but findings revealed challenges and reservations about communication with these groups of people in their social environment. The author recommends that sexual and reproductive health intervention strategies for deaf adolescents should focus on enhancing communication opportunities (especially with Sign Language) with parents and health professionals as they are critical elements in their environment for promoting healthy sexual and reproductive health behaviors |
Secor-Turner, McMorris & Scal | Mixed methods | Key informant interviews and secondary data analysis of survey data | 347 participants – 337 young adults with mobility limitations aged 16–24 and 10 healthcare professionals | Experiences of sexual health services for youth with mobility impairments and challenges to providing services from healthcare providers and experts perspectives | Challenges to providing sexual health services to youth with mobility impairments included not talking about sex, managing sexual development, adaptation and instruction, parent roles, and safety. Survey data showed that youth with mobility impairments are diverse in their experiences with sexual behavior and sources of sexual health information. Although connected with primary care providers, few received information about sexual health. Qualitative interview data with healthcare professionals suggest that although sexual development is recognized as an important part of adolescent development, there was a generalized lack of discussion regarding sexuality with youth with mobility impairments. Limited discussion may focus on safety and managing sexual development for young women with mobility impairments The authors recommend interventions to improve youths’ well-being that include comprehensive care and education that promotes and supports healthy sexual development |
Shpigelman & Vorobioff | Phenomenological -constructivism | In-depth interviews | 24 Jewish and Arab participants with visual impairments aged 18–40 | Romantic experiences of young adults with visual impairment from various cultural backgrounds and the implications for their psychological wellbeing | Singlehood seemed to be a distressing situation for the Muslim female participants compared to the Jewish participants. Having a romantic partner contributed to the participants’ self-acceptance and psychological well-being, especially for Muslim individuals. The authors highlight the intersection of lifelong disability, gender, and culture in the context of romantic relationships. The authors call to support the romantic opportunities and experiences of young individuals with visual impairment, especially those from Arab society |
Streur et al | Grounded theory | In-depth interviews | 25 women with spina bifida aged 16–52 | The sexuality experiences and questions and sexual health needs of women with spina bifida | Women with spina bifida are sexual beings, but perceived as asexual by providers, which prevents them from getting adequate sexual health education and leaves them with misconceptions, unanswered questions, and vulnerable to sexual abuse. Women’s loneliness, desire to be loved, the lack of sex education by providers, and desire to be seen as sexual beings made them vulnerable. The authors identify the importance of recognizing that all women are sexual and therefore need sexual health education in order to prevent potentially harmful misconceptions, address concerns specific to their disability, and optimize their sexual experiences and self-confidence |
van Amsterdam, Knoppers & Johnman | Feminist poststructuralism | Interviews and focus groups | 4 physically disabled Dutch youngsters aged 12–18 | Embodiment of physical disabled youngsters. How disabled students in an ableist context discursively construct and position themselves in relation to dominant discourses that mark their bodies as abnormal and deviant | Although dominant societal discourses construct disabled bodies as deviant, vulnerable, lacking, and ‘abnormal’, the youth participants constructed the self as ‘normal’. One of the interviewees used the alternative discourse ‘everyone is different, everyone is normal’ to position her disabled self as different and normal simultaneously. Others normalized their disabled bodies by attempting to pass as able-bodied. They tried to minimize and/ or hide their disability. Our interviewees also engaged in various performative acts of resistance. They challenged these dominant discourses by strategically using the possibilities a different/disabled self provided them |
Wazakili, Mpofu & Devlieger | Not stated | In-depth interviews and focus groups | Sixteen young people with physical disabilities aged 15–24 | Disabled young people’s experiences regarding sexuality and HIV and AIDS and the role of rehabilitation professionals | Sexuality and HIV and AIDS matters were not part of the rehabilitation process for most participants. Their limited factual knowledge about sexuality and HIV and AIDS issues did not persuade them to change their sexual behaviour or take preventive measures against contracting HIV infection. The participants reported that parents often collaborate with teachers and health workers in special schools to force disabled young women to use contraceptives to prevent pregnancy. Yet no effort is taken to educate them on sexuality or prevent coercion or rape and the risk of contracting sexually transmitted diseases, including HIV and AIDS. The authors recommend that rehabilitation professionals need to widen their scope of practice to include the promotion of good sexual and reproductive health for disabled young people |
Willis, Miller & Wyn | Social constructivism | Semi-structured interviews | 40 young people with cystic fibrosis aged 16–20 | Gendered embodiment and survival for young people with cystic fibrosis | A theory of gendered embodiment is proposed to explain the differential life expectancy for young men as against young women suffering from cystic fibrosis. The social construction of masculinity and femininity as social practices resulted in the former being more conducive to survival than the latter in this case. These young people socially constructed their identity firstly as young men and women, and only secondly as people living with CF. The consequence was attempts at adherence to the prescriptions of normative masculinity and femininity. Our research showed systematic differences in young men and women’s experience of CF. The young men were likely to maintain a more positive attitude in their everyday experience of living with the disease and engage in physical activity, following masculine ideals to not be emotional and be strong, which helped to maintain health. Young women were likely to be more passive and want to obtain the attractiveness of a slender bodyshape, following feminine ideals. The lack of physical activity and the need to look attractive rather than be active had a powerful effect on morbidity. One of the consequences of gendered embodiment is that it legitimates behaviour for young men that is conducive to their health while at the same time tending to involve practices for young women that endanger their health, reducing their life expectancy |
Zamboni | Not stated | Online survey with open ended questions | 300 individuals with skeletal dysplasia aged 18–81 | The experiences of sexual health education among individuals with skeletal dysplasia | Many participants felt their sex education neglected their specific minority needs. These needs may include body image concerns, medical considerations in sex or pregnancy, and logistics of physically having sex. The author stated that both the general public and professionals may contribute to feelings of marginalization among individuals in this population. This makes it more difficult for individuals with skeletal dysplasia to develop a health body image and feel entitled to being sexual individuals. The author calls for healthcare systems and communities of individuals with skeletal dysplasia to work together to increase their access to sexual health education |
Appendix 4: Characteristics of included grey literature
Author(s)/Organization | Title | Type of information | Audience | Phenomena of interest | Authors conclusions |
|---|---|---|---|---|---|
Advocates for Youth | Sexual Health Education for Young People with Disabilities – Research and Resources for Educators | Summary of information and sexuality resources by a community -based organization | Educators and young people with disabilities | Sexual health education for young people with disabilities | Accurate and developmentally appropriate sexual health education, which acknowledges and affirms all people’s sexuality, is necessary for young people with disabilities to learn about self, relationship safety, and responsibility. Often when a person with a disability does express their sexuality they are considered ‘hypersexual’ and have ‘uncontrollable urges’. Young people with disabilities may need reassurance that they can have satisfying sexual relationships and practical guidance on how to do so. For youth with physical disabilities, it may be useful to use stories and examples of others with similar disabilities who have loving, satisfying intimate relationships |
United Kingdom National Health Services | Common issues with physical disabilities and sexuality | Government report | Government, general public | Sexuality and physical disabilities | With any type of disability, sexual relationships and pleasure are possible. However, the disability needs to be taken into consideration and the mechanics of it all – creativity and flexibility are essential. When delivering sex education to students with physical disabilities consider: 1. Lack of privacy & independence in daily living, 2. They may have missed out on formal & informal sex ed, 3. Lack of social opportunities and obstacles to forming friendships, 4. Disabled youth may be at greater risk of exploitations & abuse due to their vulnerability, 5. Make sure that there is access to the facility where the education takes place, 6. Make sure there are resources available to aid the visually impaired students, 7. Make sure there are resources to aid the hard of hearing students, and 8. Have referrals on hand |
United States National Sexual Violence Resource Center | Teenagers & Sexual Violence | Factsheet from government organization | General public | Sexual violence among teenagers | Sexual violence does not happen in isolation. Oppression (racism, classism, heterosexism, ableism, etc.) is one of the root causes of sexual violence. Youth of color, homeless youth, and LGBTQ youth are more likely to experience sexual violence. Over 25% of girls with a physical disability experienced contact sexual violence. Over 18% of boys with a physical disability have experienced contact sexual violence. In one study over 22% of physically disabled youth experienced contact sexual violence—this is 1.74 times higher than able bodied youth. Over 40% of physically disabled youth experienced non-contact sexual violence |
Dickens & Sturtz | Growing Up with Spina Bifida—What We Have Learned | Narrative story and research summary | Healthcare providers and educators | Quality of life of young people with spina bifida | The ability to love and to be loved does not change when a person has spina bifida. Provide information for the elementary school-aged child through the teen years regarding sexuality. Find accurate general information, books, and resource centers that can answer your child’s questions in an age-appropriate way regarding topics such as maturing bodies, intimacy, dating, pregnancy, and sexually transmitted diseases. There will be some issues that are common to all youth, while teens with spina bifida may have some specialized concerns regarding their disability and sexuality. Begin teaching the child with spina bifida about his/her disability, as early as the preschool years. As the child matures, continue to update and review. The individual with spina bifida should be aware of any danger signs, such as latex allergy or shunt malfunction. Adolescents and young adults with spina bifida can take on a more independent role to monitor their body functions and stay updated on current information about their disability |
Oregon Health Authority | Preconception Health Recommendations for Young Adults with Disabilities | Government report | Healthcare providers | Preconception health for young adults with physical and developmental disabilities | Young adults with disabilities are a silent minority, not often considered in terms of sexual and preconception health. Yet they have much to say on this topic and often are not asked for their opinions, nor are they offered information that meets their needs. While data indicate that they are as sexually active as their non-disabled counterparts, they experience higher instances of bullying, harassment, and intimate partner violence. From the perspective of those with a disability, they report that they are not included in decision making about their own sexuality, and feel overly protected by those around them. Their disability is often not seen as part of the natural human condition, and is not a consideration in the life process. The preconception health recommendations that currently exist, do not always apply easily to young adults with disabilities |
IncludeNYC | Puberty, sexuality, and behavior: How to guide young people with disabilities | Summary of information and sexuality resources by a community-based organization | Parents | Puberty, sexuality, and behavior for young people with disabilities | Children with disabilities have fewer opportunities than peers to observe, develop and engage in appropriate social and sexual behavior; fewer opportunities to acquire information from peers (often held back by social isolation as well as functional limitations). Social-sexual education has been found to have positive impacts and is important for individuals with disabilities. For example: decreases the likelihood of abuse, combats myths and misinformation, promotes social skills, personhood, pleasure, reduces fear, anxiety, worry, increases self-awareness, gender comfort, allows for maturity and healthy relationships. Parents are concerned about: Overt signs of sexuality, Physical development during puberty, Genital hygiene, Fears of unwanted pregnancy, STI’s, Embarrassing or hurtful situations, Fear that their child will be unable to express sexual impulses appropriately, and Targets of sexual abuse or exploitation |
Sexual Health Victoria | Physical Disability and Sexuality | Government report | Government, general public | Sexuality of people with physical disabilities | People with physical disability can express their sexuality in satisfying ways. The attitudes and support of other people are essential in enabling people of all abilities to have healthy personal and sexual relationships. Sexual abuse or exploitation is always wrong and should be treated as a very serious matter. Sexuality is a key part of human nature. People with physical disability experience the same range of sexual thoughts, attitudes, feelings, desires, and fantasies as anyone else. To understand and enjoy sexuality, everyone needs adequate information and support from a young age |
Public Health Agency of Canada | Questions & Answers: Sexual Health Education for Youth with Physical Disabilities | Government report | Healthcare providers, educators, general public | Sexual health education for youth with physical disabilities | Educators and other professionals working with youth with physical disabilities have a responsibility to ensure that their rights and dignity are respected. Providing sexual health education inclusive of school-aged youth with physical disabilities is fundamental to their overall development and health. Evidenced-based strategies, such as those found in this document, can be used to create supportive environments for youth with physical disabilities and to foster discussions on disability and sexuality. It is important that youth feel safe and supported and that schools and communities address both their learning and their physical needs. It is equally important to create an environment where youth with physical disabilities can contribute, be engaged and be of service to others |
Victoria State Government—Disability Services | Personal relationships, sexuality and sexual health policy and guidelines | Government policy | Government, general public | The rights and responsibilities of people with a disability and disability support providers in regard to personal relationships, sexuality and sexual health | The majority of people with a disability do not need support to create rewarding relationships. However, some people with a disability have encountered obstacles in their attempts to develop relationships, explore and express their sexuality, and access sexual health information and services. The Victorian State Disability Plan 2002–2012 proposes three goals and strategies: 1) Pursuing individual lifestyles: to enable people to pursue their lifestyles by encouraging others to respect, promote and safeguard their rights, and by strengthening the disability support system so people’s individual needs can be met. 2) Building inclusive communities: to strengthen the Victorian community so it is more welcoming and accessible, and so people with a disability can fully and equally participate in the life of the Victorian community. 3) Leading the way: to lead the development of a more inclusive community for people with a disability by developing more inclusive and accessible public services, and promoting non-discriminatory practices |
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Giles, M.L., Juando-Prats, C., McPherson, A.C. et al. “But, You’re in a Wheelchair!”: A Systematic Review Exploring the Sexuality of Youth with Physical Disabilities. Sex Disabil 41, 141–171 (2023). https://doi.org/10.1007/s11195-022-09769-5
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DOI: https://doi.org/10.1007/s11195-022-09769-5