Examining literature that tells us what people with intellectual disability (PWID) think and feel about their sexual lives may enable families and professionals to offer a more person-centered approach to education and support. Examining the voices of many individuals across several studies may provide more convincing evidence about the experiences of these individuals—turning a solo into a chorus. Thus, the purpose of this article is to describe the results of a metasynthesis of qualitative studies highlighting the voices of PWID with respect to relationships and sexuality. Combining the results of 16 qualitative studies, 271 participants with intellectual disability were interviewed individually or in focus groups about their feelings and experiences regarding intimate relationships. Studies were conducted across Europe, in Australia, China, and in the United States. A little more than half of the participants were male; ages ranged from 13 to 89. Results revealed two competing themes of control and desire. Participants across studies desired friendships and close interpersonal relationships, yet were restricted from developing these relationships by policies, program staff, and family members.
In addressing the health and well-being of people with intellectual disability (PWID), perhaps no topic is more important than intimate and romantic relationships. In the general population, intimate relationships can provide psychological benefits such as decreases in depression, economic benefits, and even physical health benefits (Hargrave & Pfitzer, 2003; Robles, 2014). The same is true for PWID. Despite a recent increase in literature surrounding the sexuality and romantic experiences of PWID, there still exists large discrepancies in the way that these experiences are viewed and discussed by researchers, caregivers, and the individuals themselves. As Löfgren-Mårtenson stated, “Research focusing on the voices of people with ID is still unusual” (2012, p. 212).
For typically developing couples, intimate relationships have been shown to have significant impacts on their health (Kiecolt-Glaser & Newton, 2001). Those in functional and healthy relationships show better psychological and physical health; those in dysfunctional relationships or not in relationships at all, show more negative symptomatology (Robles, 2014). From a health standpoint, adults who are in coupled relationships show better cardiovascular health and sleep patterns (Kane, Slatcher, Reynolds, Repetti, & Robles, 2014; Troxel, Robles, Hall, & Buysse, 2007), longevity of life, and lower rates of mental health symptoms such as anxiety and depression (Beckes & Coan, 2011; Snyder, Simpson, & Hughes, 2006). From a social standpoint, individuals in relationships show better interpersonal skills, conflict resolution, and greater social inclusion (Hargrave & Pfitzer, 2003). Adults with intellectual disability (ID) experience similar benefits when they are in romantic relationships. These relationships help increase feelings of inclusion, and social/emotional support (Lafferty, McConkey, & Taggart, 2013; Mattila, Uusiautti, & Määttä, 2017; Morales et al., 2014). Experiencing intimate relationships is a major component in adult quality of life.
Despite the knowledge of the importance of intimate relationships in our lives, professional care providers and families of PWID frequently deny, dismiss, discourage, or even discipline PWID for seeking or engaging in sexual relationships (Black & Baker, 2013; Richards, Miodrag, & Watson, 2006). PWID often face extreme discrimination and lack of acceptance from others when coupling up or expressing their sexuality (Evans, McGuire, Healy, & Carley, 2009; Healy, McGuire, Evans, & Carley, 2009; Lee & Oh, 2012). Family members and supported living organizations can sometimes be restrictive in the types of social situations they allow the adult with ID to participate in, leading to isolation and fear of retribution. The perceptions of staff working with the adults, as well as others in the community, can also negatively impact these experiences (Evans et al., 2009; Healy et al., 2009; Scott & Havercamp, 2014).
There is a body of literature that expresses parent and caregiver opinions about what should be done regarding sexuality for adults with ID. Unfortunately, many caregivers ascribe to the method of avoidance. Many believe that they should not talk about sexuality with their family member with ID (Berman et al., 1999; Cheng & Udry, 2003; Evans et al., 2009; Sinclair, Unruh, Lindstrom, & Scanlon, 2015; Swango-Wilson, 2009). Often this is done because caregivers feel that, if sexuality is not discussed, the individual with ID will be less interested in the topic and will not want to participate in sexual activities. This leads to many caregivers being proponents of abstinence-only sexuality education (Berman et al., 1999; Sinclair et al., 2015), or education that focuses solely on practical and biological aspects of sexual development (Murphy & Elias, 2006; Pownall, Jahoda, & Hastings, 2012). Caregivers also often place many restrictions on the types of sexual activities and experiences an adult with ID can have (Healy et al., 2009; Löfgren-Mårtenson, 2004; Murphy & Elias, 2006). These restrictions and avoidance of the topic of sexuality are often done due to caregiver concern surrounding the high rates of abuse and exploitation this population experiences (Swango-Wilson, 2009; Ward, Bosek, & Trimble, 2010). Although avoidance of abusive experiences is an important consideration for caregivers, these tactics ultimately impact the self-determination and independence of adults with ID regarding sexuality and romantic relationship experiences.
Another body of literature reports the results of sexuality interventions, or what has been done. One type of intervention is a behavioral skills training (BST) approach focusing on abuse prevention (Egemo-Helm et al., 2007; Kim, 2016; Lumley, Miltenberger, Long, Rapp, & Roberts, 1998; Miltenberger et al., 1999). The BST approach teaches PWID a script involving saying no, leaving the situation, and reporting the incident. Success of these interventions was measured by how well the participants performed the steps in situ. Other interventions have focused on building healthy relationships (Frawley & Bigby, 2014; Ward, Atkinson, Smith, & Windsor, 2013; Ward, Windsor, & Atkinson, 2012). Results of these interventions have been measured by reports of participants' social support networks.
There is another body of literature that tells us what people with ID think and feel about their sexual lives. Understanding how sexuality is experienced by PWID may be critical to implementing appropriate supportive services for their sexual health (Bernert, 2011). Using qualitative methods to listen to the stories of individuals with ID may be particularly important when it comes to a topic as deeply personal as sexuality. Yet, criticism of qualitative research has grown in this current era of big data (Au, 2018). Qualitative studies often have been small and discrete (Wuest, 2011) and report the experiences of only a few isolated individuals, thus not yielding generalizable results (Kvale, 1994). Single-case quantitative research was similarly criticized for lack of general applicability due to small sample size. In recent years, however, proponents of single-case research have addressed “the small n issue” by conducting meta-analyses that combine the results of similar interventions across a range of individuals in different areas (Scruggs, Mastropieri, Forness, & Kavale, 1988). Qualitative researchers have been challenged to find ways to bring together the findings of multiple qualitative studies (Wuest, 2011). Combining the results of several studies of the same phenomenon and hearing the voices of a wide range of individuals in different areas is possible through metasynthesis.
Metasynthesis and meta-ethnography have gained credibility within the medical field in studying the experience of those undergoing various treatments, and those caring for others (Mohammed, Moles, & Chen, 2016). Metasynthesis involves more than a review of qualitative studies; it involves analysis and synthesis of a carefully selected group of studies (Erwin, Brotherson, & Summers, 2011). It involves integrating and interpreting patterns and insights across studies. “Qualitative metasynthesis is a process that enables researchers to combine evidence to synthesize existing qualitative studies to construct greater meaning through an interpretative process” (Erwin et al., 2011, p. 186). Therefore, the purpose of this article is to present results of a metasynthesis of qualitative studies highlighting the voices of PWID. Our specific research objective was to analyze and synthesize narratives of PWID telling about their experiences with, and perceptions and feelings about, sexuality and intimate relationships.
Early descriptions of metasynthesis include a meta-ethnography primer by Noblit and Hare (1998) that discussed synthesizing ethnographic studies on the same topic. These authors articulated six steps in conducting a meta-ethnography that also apply to metasynthesis (a broader term that indicates analyzed studies may use different qualitative methodologies). We followed their steps as described in the following sections:
Deciding the phenomenon of interest. As outlined in our purpose statement, the phenomenon of interest was the voice of PWID about their experiences with, and perceptions and feelings about, sexuality and intimate relationships.
Deciding what is relevant. We describe our process of searching and making decisions regarding including and excluding studies for review.
Careful reading and re-reading. After careful reading of the articles, we summarized the participant characteristics and the methods used, and each author created notations of common findings.
Determining how studies are related. Our common notations became general themes. Each article was then coded by themes.
Translating studies into one another. By combining themes from each study, we determined overarching categories.
Synthesizing the translation. The discussion of our findings synthesizes the meaning of our themes and categories and how they relate to prior research.
We conducted a search of research literature that discussed sexuality from the point of view of those with intellectual disability. Search engines explored were (a) Academic Search Complete, (b) ERIC, (c) Psychology and Behavioral Sciences Collection, (d) Professional Development Collection, and (d) MEDLINE. Search terms were: [intellectual disability or mental retardation or learning disability or developmental disability] AND [qualitative] AND [sexuality or sex or intimacy or sexual behavior]. Our search criteria included articles published in English, from 2000 to 2018, in scholarly peer-reviewed journals. Project reports and other nonrefereed manuscripts were not included. The initial search resulted in 191 articles. We then reviewed the titles and keywords of each article. We jointly decided to exclude articles that focused solely on (a) participants with mental illness or autism spectrum disorders; (b) caregiver, staff, or family perceptions, attitudes, and experiences; (c) sexual violence, sex offenders, or sterilization; (d) sex/gender differences; and (e) sexual health such as hygiene and mammograms. Thirty-five articles remained. After we each reviewed the abstracts and articles, we excluded literature reviews and those articles that focused on: (a) research methodology rather than findings, (b) assessment of sexual knowledge, and (c) policy initiatives or recommendations. We then conducted an ancestral search resulting in an additional 10 articles. After discussing and coming to consensus, we further excluded studies that (a) focused solely on sexual identity, sexual knowledge, or experiences in sex education programs; (b) reported only on how participants defined friendship or love; and (c) mixed-method or observational studies that presented summaries, but not the “voices” of PWID.
We retained 16 studies (18 articles—two author groups each published two articles about the same participants) that reported qualitative one-on-one and/or focus group interviews of adults and young adults who were identified by professional/service providers as having intellectual disability. The 16 selected studies included the voices of participants discussing their perceptions, feelings, and experiences of close interpersonal and intimate relationships. In this sense, our study may be considered a metaphenomenology, however, we chose to use the more broadly used term metasynthesis. Some of the studies were described as inclusive research in which participants with ID were included in the research process. See Table 1 for a listing of these studies.
Nine of the 16 studies were conducted in northwestern Europe (four in England, three in the Republic of Ireland, one in Northern Ireland, and one in Scotland). Two studies were conducted in Australia and two in the United States. One study each was conducted in China, the Netherlands, Malta, and Spain. [Note: One study was conducted in both Australia and the Republic of Ireland.]
A total of 271 PWID served as participants across all studies. Of these participants, 121 were men and 100 were women. For 69 of the participants, gender was not provided (e.g., 19 self-advocates with gender evenly split Study 1, 15 self-advocates Study 6, and 25 adults in Australia and 10 adults in Ireland Study 7). Two studies had women participants only (n = 14 2 and n = 10 3). Study 15 had men participants only (n = 10). Study 12 purposefully selected homosexual adults (n = 21; 19 men and 2 women); and Study 9 selected heterosexual couples (n = 16; 8 couples). The other studies had both men and women participants with similar numbers of both groups included.
All participants were identified as having intellectual disability. Three studies, two from England and one from Ireland 9,11,15, used the term “learning disability,” however, the participants were receiving supported living services, were in a day program for adults with disabilities, and received other services that would be associated with PWID in the United States. In the United Kingdom, a diagnosis of learning disability requires three criteria: (a) intellectual impairment (IQ), (b) social or adaptive dysfunction combined with IQ, and (c) early onset (Holland, 2011), which mirrors the diagnosis of intellectual disability in the United States. The term learning difficulty is associated with what in the United States is termed learning disability (British Dyslexia Association, n.d.).
The ages of participants across studies was very broad, ranging from 13 to 89. However, only two studies included young adults; Study 5 included three participants ages 13–17, and Study 4 had 25 participants between the ages of 17 and 20. These participants spoke more about sexuality education and their hopes for the future rather than experiences. The remaining studies reported age ranges of the participants (See Table 1), with the mean ages ranging from 29.4 to 47 years. Most of the participants across studies were in their 20s or 30s. We focused on reporting common experiences rather than those of outliers. Therefore, our results do not represent those who were in their teens, nor those in their 60s or above.
The majority of the 271 participants lived in family homes or in a residential setting with care staff. In four studies 9,13,14,15, some participants (15 of 65, 23%) were described as living in their own homes. The other participants in these same studies lived in residential placements with staff or in family homes. Two studies 2,11 described some participants (9 of 33, 27%) as living independently with some support. Many of the studies did not break down the numbers of participants living in specific types of residences.
Separately, we analyzed each of the 16 studies using word repetitions and key-words-in-context methods to elicit themes (Ryan & Bernard, n.d.). We compared themes and came to consensus. Each of us then hand-coded the articles according to these themes (See Tables 2 and 3). As we carefully reviewed our findings together, we determined that our themes fell into two larger competing categories—control versus desire. Control included PWID feeling as if other people (e.g., parents or guardians, service providers, etc.) regulated their sexual experiences without their input. Control also included individuals simply feeling a general sense of having no control or power over their ability to express their sexuality and have sexual experiences. Themes falling under the larger category of control included: (a) restrictions, (b) others in charge/powerlessness, (c) disability-centered environments, (d) sex is secretive, and (e) abuse. The larger category of desire included wanting long-term committed relationships and someone they could talk to about sexuality and relationships. Loneliness was mentioned by participants in several studies, as was the desire to be seen as an adult who is capable of adult relationships. Themes falling under the larger category of desire included: (a) desire for intimacy, (b) a desire for friends/confidantes, (c) pleasure, and (d) identity.
After we coded the 16 articles, we conducted an additional search to determine if we had missed any relevant articles. At this time, we found three metasyntheses published in 2018 (English, Tickle, & dasNair, 2018; Fulford & Cobigo, 2018; Whittle & Butler, 2018). Although these articles did not use all of the same studies we reviewed, there was overlap. Therefore, we used these metasyntheses to verify the dependability of our findings. Lincoln and Guba (1985) describe dependability in qualitative research as results that are consistent and could be repeated. Consistency will be demonstrated by drawing parallels between our findings and those of the three 2018 metasyntheses in the Discussion section.
Theme 1: Control
The first theme that emerged was the theme of control. Control included individuals explaining that they felt as if specific others (e.g., guardian, service provider, etc.) had the ability to regulate their sexual experiences without their input. Control also included individuals simply feeling a general sense of having no control or power over their ability to express their sexuality and have sexual experiences. Within the theme of control, five subthemes emerged: (a) restrictions; (b) others in charge, powerlessness; (c) disability-centered environments; (d) sex is secretive; and (e) abuse.
In 14 of 16 studies, participants mentioned restrictions being placed on their sexual experiences. Many individuals discussed restrictions that came in the form of overprotective or interfering parents or other family members 1,10,11,12,13,16. One participant stated, “They would scold me if they found out I was dating a young man” (Azzopardi-Lane & Callus, 2015, p. 35). Another participant responding to the control parents had stated, “Parents need to trust us, we are old enough to be in a relationship” (p. 36). Often, these parents and family members were caregivers and legal guardians who would put limits on who their family member could have a relationship with 1,12,15. By far, the most common theme mentioned by participants across studies was restrictive programs and policies present in the disability-centered environments in which they lived 1,2,3,5,6,8,10,11,12,15,16. One participant discussed how she was not allowed to have sex with her boyfriend, and that the staff at her group home would stop her from seeing her boyfriend if they found out (Fitzgerald & Withers, 2011, p. 8). She was “clearly frightened of losing a valued person in her life as ‘punishment' for having a sexual relationship with him” (p. 9). Some participants responded that they were content with professionals' involvement in employment and daily living supports, but they were dissatisfied with professionals' interference in their social lives and sexual expression 2,5,8,11,12,13,16. In two studies, however, a few of the participants reported being satisfied with the support they received by professionals 12,15. In Stoffelen and colleagues (2013), five male participants had received coaching from a sexologist and “were very happy with the coaching” (p. 261). Participants discussed issues with restrictions around needing to be accompanied on dates 2. These same participants also felt as if they did not have a choice in social activities and were restricted in what they could do. Many studies reported participants feeling as if they were prohibited from engaging in sexual activity and were not allowed to have sex 3,5,6,8,12,16.
The younger participants in three studies each from different countries described a restrictive script in sex education 4,8,16. The focus was on how to say no, and how to avoid sexual risk situations, including the dangers of sexually transmitted infections. This left several of the young women “a bit scared about the whole topic” (Frawley & Wilson, 2016, p. 480). Much to the disappointment of the young people in these two studies, there was no discussion of sex being pleasurable or about relationships being positive. Overall, participants expressed a desire to exert more autonomy over their social and sexual lives. This included having fewer restrictions from outside forces on their sexual experiences.
Others in charge, powerlessness
Discussions of who had control in regards to sexual experiences was a prominent theme in 13 of the 16 studies analyzed. This included dialogue around other people being in control, or outside circumstances controlling their sexuality. Among those groups of people most often cited as taking control were parents 1,2,8,16, caregivers 1,2,5,6,8,12,16, others and outsiders 2,4,5,7,13, and policies and programs 2,6,11,12. When discussing outside circumstances, feeling controlled by lack of privacy was a large issue 1,5,6,10,12, as was feeling controlled by limited finances and reliance on others 1,6. One participant stated that she was not allowed to be alone with her partner who was forbidden from coming to her house. She stated that breaking this rule would mean losing her right to live in a group home (Rojas, Haya, & Lázaro-Visa, 2016). A male participant stated, “I had my room, but not my privacy” (Yacoub & Hall, 2009 p. 9). The participants in Rushbrooke, Murray, and Townsend (2014) felt their choices about intimate relationships were constrained by family caregivers, services, and society. “People think they can rule you because you've got a disability … You can't choose the colour that you like. As well as your boyfriend you can't pick” (p. 537). This participant continued by stating that support staff shouldn't choose “who I love and who I like, and pick the man for me” (p. 537). Another participant discussed the importance of being given privacy by stating “A couple should have a chance to get to know about each other and to talk to each other in private” (Hollomotz & The Speakup Committee, 2008, p. 94).
Feeling controlled by others and outside forces also left many of the participants feeling powerless. In two studies, females discussed feeling powerless in relation to men when it came to sexuality 1,3. One participant stated, “I know you have sex with a man ‘cos you're a woman and you have different parts to your body. You can't stop that” (Fitzgerald & Withers, 2011, p. 7). Another participant in the same study said, “Like every time he used to knock on door, oh do you want to have sex, aww no I can't be bothered tonight and that, he just like get his pants down and start doing it and I were like get off me” (p. 8). A few studies also mentioned feeling powerless in that the directions of others always needed to be followed and there was no freedom to make their own choices 6,8,13. When asked about a previous boyfriend she had mentioned, one participant said, “We broke up years ago ... We had to be friends ... Because it's the rule of the staff” (Kelly, Crowley & Hamilton, 2009, p. 313). When autonomy was challenged, and others interfered, that could sometimes lead to conflicts 2. A final area of others being in control was in decisions about contraception, which were often made by others and not always in consultation with the individual 4,8.
Another area in which individuals reported feeling a lack of control was spending the majority of their time in disability-centered environments, adult programs, and work programs 1,3,7,8,11. Fourteen of the 16 studies discussed this as an issue. Participants indicated that the majority of their activities and socialization occurred in these disability-centered environments 2,5,8,10. Bernert (2011) reported that almost half of the female participants socialized almost exclusively with other clients in agencies that provided support. Most were not supported or assisted if they chose to engage in activities in the community, and they were not given choices regarding social activities within the agency. Participants in three studies mentioned their only potential dating partners were in the same disability services program 5,8,9. Healy and colleagues (2009) stated “In many instances, participants forged and sustained their relationships while attending the service; many had a girl/boy friend who attended the same facility” (p. 908). Having one's social activities guided by disability-support agencies exerted a lot of restrictions on the individuals in terms of being able to express their sexuality, go on dates, or maintain relationships. This also increased feelings of having no control over their experiences.
Sex is secretive
One way in which participants felt controlled was the air of secrecy surrounding sex. In 10 of 16 studies, participants mentioned that sex was to be kept a secret. Participants in five studies discussed how they learned that they should not talk about sex 1,3,7,11,13. They used terms such as making babies rather than sex or intercourse (Azzopardi-Lane & Callus, 2015). Others discussed how sex is embarrassing to talk about 15. Participants in one study discussed feeling a sense of shame in having sex outside of marriage and, therefore, did not discuss it 14. Many participants described sexual relations as forbidden and/or wrong, and unsafe to talk about. Therefore, they were unable to discuss relationships with their caregivers. This also prevented some participants from talking about or reporting incidents where they had been pressured into or forced to have sex 2,7.
Many participants indicated they had received messages about hiding intimate relationships. Sometimes these messages were directly stated, other times they were implied. In one study, several participants said they were not “allowed to have sex with their boyfriends and feared the consequences of getting caught” (Fitzgerald & Withers, 2011, p. 8). Because they needed to hide their sexual activities, participants in five different studies spoke of meeting partners secretly to avoid reprimands 1,5,6,8,13. They mentioned needing to go “behind the backs” of their caregivers 2,5,6,8, and some even discussed that there would be punishment if caught 1,12,13. Other participants did not fear punishment, but kept their sexual experiences secret in order to not upset others 7,11. Several participants discussed how they kept their relationships a secret because homosexuality was forbidden 12. One participant mentioned, “I didn't tell my folks about it because they don't know that I'm gay” (Rushbrooke et al., 2014, p. 537).
In seven of 16 studies, participants talked about interpersonal violence and sexual abuse as a form of control within their sexual experiences 2,3,7,12,13,15,16. Across these studies, 35 out of 77 participants (45%) reported experiencing abuse. A number of the male participants in Yacoub and Hall (2009) stated they were coerced into sex. One participant disclosed being pestered by another resident, others talked about situations in the community. Two of the participants in this study reported childhood sexual abuse. Although this was a theme that emerged in multiple studies, it was not often a direct question within the studies. Therefore, there may be experiences of abuse for other participants that were not reported or discussed in the studies.
Theme 2: Desire
The second theme that emerged was that of desire. Desire included what the participants of the various studies stated they wanted in their sexual experiences and relationships. Within the theme of desire, four subthemes emerged: (a) desire for intimacy, (b) desire for friends or confidantes, (c) desire for pleasure, and (d) desire for sexual identity to be recognized.
Desire for intimacy
In 15 of 16 studies, participants expressed a desire for intimacy and they wanted more opportunities to develop close relationships. Participants in several studies specifically mentioned wanting a sexual relationship 1,2,5,8,10,12,15. In two studies, although participants wanted a close relationship, they indicated feeling afraid or apprehensive of sexual intimacy 3,4. Only one study showed mixed results, with some participants being happier in relationships and others stating they preferred to be single (Yacoub & Hall, 2009). When asked if they wanted a girlfriend, one male participant replied “(Enthusiastically) Oh, it'd be great!” (Kelly et al., 2009, p. 312). Participants in two studies specifically mentioned a desire to get married 5,16. One participant stated “It's nice to get married, you have a wife and you'd ... you'd have a better life and a better future” (Healy, et al., 2009, p. 910). Some participants indicated a desire for more opportunities to have sexual relationships 1,2,14,15, and participants in one study emphasized the important of simply having more opportunities to meet people 11.
Most of the participants wanted intimate relationships, and envisioned themselves in a long-term committed relationship 4,5,7,10,12,13,14,15,16. One participant stated:
that's what's good about our relationship. You've got to learn ... their quirks and everything, uh, it's like he makes me feel loved, more loved than my other two. My other two just ignored me. It's important to me, because, you know, everybody loves to be loved. Everybody needs someone they can depend on. If you have a problem at work or you're just having a tough time or tough day, he brightens up my day. Yeah. I love him. (Turner & Crane, 2016, pp. 686-687)
Participants in Rushbrooke et al. (2014) stated that intimate relationships were desired and important because they fulfilled needs for companionship, support, love, and affection. The relationship “means a lot to me … Er, I couldn't part with him. Right, I love him that much it's part of in me heart” (p. 534). For those not in a relationship, there was a sense of dissatisfaction and feeling like they could not progress in their life without a partner. “I want to have some plans for the future. Like when, like going out with me or, you know, if I can just find one. Someone to go out with me” (p. 534).
Some participants saw sexual relationships and living as a couple as a reward for getting a job and demonstrating independent living skills (Rojas et al., 2016). From interviewing 16 adults with ID, these authors stated, “Life can be seen as going down a path that has been designed by others, in which you have to pass different challenges or tests that finally give you the opportunity to live alone, in a couple or to have a family” (p. 59). Some participants viewed sex as appropriate only within a marital relationship 13,14. Most participants also valued touch, holding hands, and kissing, and physical contact was related to emotional closeness. Turner and Crane (2016) discussed skin hunger, their participants' desire for caressing, holding, hugging, and hair stroking. The close monitoring by staff and/or families made this type of touch the only sexual contact allowed. As such, it was much desired and highly valued. Participants in one study discussed how having a relationship improves quality of life 11. Participants in six studies indicated that having a partner was a priority in their lives, and they valued close relationships as extremely important 6,9,10,11,14,15. One participant discussed her life before having a relationship:
When you've a learning disability, it can be very lonely. You end up just sitting in the house and wandering about on your own and all and you … feel as if the whole world is coming down on top of you and [you] feel like suicide … I would have stayed in bed all day, never bothered getting up. (Lafferty et al., 2013, p. 1080)
Desire for friends or confidantes
The importance of having friends or peers to talk with about sexual relationships and experiences was discussed in 10 of the 16 studies 1,4,5,6,10,11,12,13,14,15. In one study, participants indicated the information they were given was often wrong, and very few had friends or others they felt they could ask questions of or have discussions with 7. Participants elaborated on having a need to talk about sexuality with their peers, and a strong desire to be able to do so 1,4,15. Participants in Yacoub and Hall (2009) stated that they desired talking to others to help and to be helped. They used terms such as “stand by,” “support,” “trust,” and “sharing” in defining friendship. They said it was important to have friends: “if you break down you can go and speak to one of your friends” (p. 8). Many of the participants across studies discussed feeling lonely as the main motivation behind this desire for friends or peers 7,11,12,14,15. One participant in Turner and Crane stated,
I like to be friends with them and sometimes, uh, they don't want to be friends with me. Or I don't want – or, uh, sociali– socializing with me. And, uh, uh – uh, some- – sometimes it makes me – lonely at times. And – and, um, sad – um, but, uh – I just go on do my, you know what I'm saying, just do what I want to do. And just be alone and stuff. (2016, p. 682)
Wanting to socialize with others of the same age 1,4,15, and having more opportunities to meet people 11,12,15 were also indicated as desires. This desire for friends and confidantes may come from a lack of overall knowledge in regards to interpersonal relationships and how to attain and maintain them. In five studies, participants mentioned that their previous sex education was focused on teaching biology and hygiene, and not about the relationships themselves 3,4,5,8,10. When asked about her experience with sex education in a special education classroom setting in high school, one participant stated, “The kids were not mature enough because they always mucked up and laughed about it and then they stopped it because we didn't really learn much ... No they didn't actually teach us properly” (Frawley & Wilson, 2016, p. 480).
Desire for pleasure
Within a sexual and romantic relationship, participants indicated a desire for pleasure. Eleven of the 16 studies discussed whether or not sex and relationships were pleasurable. Three of the studies indicated that participants felt sex was pleasurable 12,14,15. In Yau, Ng, Lau, Chan, and Chan (2009), it was reported that one woman mentioned wanting to have sex because it was pleasurable, however, the majority of participants discussed sex in more shameful terms. In one study, two of five female participants indicated that they enjoyed sex a lot 11. Some participants also indicated that sexuality is much more than sex 14 and emphasized the value of holding hands and being held 13. The following is an excerpt from Sullivan, Bowden, McKenzie, and Quayle (2013):
Interviewer: Do you think that it's important to have a close relationship?
Interviewer: What's, what's important about it?
Participant: herrr, holding her hand. (p. 3462)
Another participant in the same study stated,
I felt closer to William than I did, than I did to Ben … because he used to, he used, he used to put his two arms around me … instead of just one, it was two … It made me feel more secure. (p. 3462)
Companionship and caring for another person were also described as pleasurable experiences 9,10,11. One participant stated,
That's what's good about our relationship. You've got to learn, ... their quirks and everything, uh, it's like he makes me feel loved … It's important to me, because, you know, everybody loves to be loved. Everybody needs someone they can depend on. (Turner & Crane, 2016, pp. 686-687)
All of the participants in the Turner and Crane study indicated a desire to have pleasure within intimate relationships.
In two studies, participants discussed sex as dirty and disgusting 2,3,16, and some participants mentioned that sex was only for procreation 1,2,13. In one study, only two of 14 participants associated sex with pleasure 2, and in two other studies participants indicated that sex is pleasurable for men, but not for women 2,3. One study indicated that “most of the women considered sex to be at best a pleasureless secret activity undertaken with men in response to biological imperatives and at worst, painful, dirty, and diseased” (Fitzgerald & Withers, 2011, p. 8).
Desire for sexual identity to be recognized
Discussion of personal identity in relation to sexuality and romantic relationships was mentioned in 13 of the 16 studies. Some participants talked about themselves as sexual beings 10,11,14,15,16, and also as sexual adults in partnered relationships 9,14. Identifying as gay or lesbian was mentioned as a personal identity issue 13,15. In one study, 18 participants indicated that they feel it is easier now to be openly gay than it was in the past 12. Some participants indicated they did not feel they were able to express their sexual identity 1,3,7. One participant saw herself being “handicapped” before being a woman. She stated “I don't know what a proper woman means. Interviewer: Are you a woman? Response: Yeah, I'm handicapped” (Fitzgerald & Withers, 2011, p. 10).
In all 16 studies, participants mentioned a desire for who they wanted involved in the relationship. Participants indicated that there is often assumed heterosexuality 1,4,14. In one study, nine out of 19 homosexual men indicated they had experienced heterosexual relationships 12. Some participants expressed having heterosexual desires 10,13,15,16, and discussed being in heterosexual relationships 2,3,5,6,7,9,11,14,15,16. Other participants mentioned having homosexual desires 12,15.
The intersection between sexual identity and disability identity was also discussed. In one study, participants indicated a desire to move away from their ID identity, and that they struggle to have an “as normal as possible” adult identity 1. They believed that existing stereotypes and negative perceptions led to stigmatized views about disabled people and sexuality, and that common standards of beauty posed barriers to them developing close interpersonal relationships 1,10. Participants also talked about the importance of having an adult sexual identity, and not focusing on having an adult with a disability identity 1. In three of the studies, participants discussed how they had internalized beliefs that sexuality was not a part of their lives 1,3. Some talked about sexual identity as a right, stating “[people with ID] have every right to have sex” (Azzopardi-Lane & Callus, 2015, p. 36). Participants in this study demonstrated opposing thoughts between what they had been brought up to believe and their current feelings and desires. These contrasting feelings also stemmed from others seeing them as perpetual children and not as sexual beings, and the participants expressed a desire to change that (Azzopardi-Lane & Callus, 2015).
Synthesis of the 16 studies selected revealed two competing themes of control and desire. See Figure 1 for a summary of the themes. Participants stated that they desired intimacy, yet programs and policies restricted couples meeting privately and the development of intimate relationships. Participants across studies also desired friendships and a peer they could talk to about sexuality and relationships. Yet, other people seemed to control their social lives and opportunities to develop relationships with peers and confidantes. Clearly, the participants had desires and needs that were not met. They believed that family, staff, policies, programs, and societal expectations posed barriers to their opportunities to experience intimate relationships. English, Tickle, and dasNair (2018) similarly found that families and formal caregivers imposed restrictions and rules on PWID. Similar to our study, their participants also discussed being reprimanded for kissing or holding hands, and were told they would be punished if they were caught having sex. Whittle and Butler (2018) also reported that PWID experienced excessive rules and restrictions in relation to sexual behaviors and intimate relationships, and were punished for not abiding by the imposed rules. Across our studies and those reviewed in the above-mentioned metasyntheses, it is clear that PWID around the world desire intimate relationships and friendships, yet their experience is often one of loneliness, restriction, and punishment for engaging in the most natural of human behaviors—personal connection.
Another aspect of control involved PWID across studies learning that sex should be secretive in terms of conversation and action. Many participants felt that sex was embarrassing to talk about and that, if one had a sexual experience, it should not be discussed with anyone. The air of secrecy around sexual relationships provides a foundation on which coercive and abusive relationships can live unchallenged. Much of the literature confirms our findings that sexual abuse and exploitation are often unreported (Catani & Sossalla, 2015; Sobsey, 2002; Walter-Brice, Cox, Priest & Thompson, 2012; Wissink, van Vugt, Smits, Moonen, & Geert-Jan, 2018).
Missing from much of the conversation was a discussion of sexual desire. Participants across studies expressed desire for relationships, not physical pleasure. Some participants expressed that sex should be for procreation, others expressed that sex was something that made another person happy. Still others expressed that being close to someone you care about was important in their lives. Very few participants discussed sex itself as a pleasurable activity. The work of Fine and McClelland (2006) supports our findings. They argued that sexuality education often positions at-risk populations (e.g., women, nonheterosexual males, and people with disabilities) as potential victims of male aggression, and ignores discourse about desire. In today's information-rich world, we know about age of first sexual experience, whether a condom was used, rates of teen pregnancy, and whether they gave birth. “However, we don't know if [they] enjoyed it, wanted it, or if [they were] violently coerced” (p. 300). Fine and McClelland continue by stating that those “at-risk” populations should be allowed to “imagine themselves as sexual beings capable of pleasure and cautious about danger” (2006, p. 301) without desire being extinguished by public institutions.
Literature over the years has mentioned the two extreme viewpoints of the sexual nature of PWID: (a) they are perceived as asexual or hypersexual; and (b) they are perceived as either the innocent eternal child, or the menacing deviant who is promiscuous or predatory and lacks personal control (Hollomotz & The Speakup Committee, 2008; Rohleder & Swartz, 2009; Turner & Crane, 2016). Participants in the 16 studies reviewed did not confirm the hypersexual stereotype. Their activities were constrained, and they did not express strong sexual urges. They did, however, feel that others saw them as eternal children who were denied their sexual maturity (Azzopardi-Lane & Callus, 2015). Unfortunately, this stereotype seems to have guided much of our current professional practice.
A paternalistically focused protection model is evident, or a dismissive action, infantilizing desire as “puppy love.” Sensual pleasure and intimacy are not acknowledged as a right or a goal. Perhaps this is because adults with intellectual disabilities seem to be sexual outsiders living on the fringe of normative sexual experiences. (Turner & Crane, 2016, p. 678)
Finally, participants desired to be seen as an adult—not an adult with a disability, but an adult sexual being. However, they spent much of their time in disability-centered environments where access to people and activities outside these environments were limited. They were defined by the programs they attended and services they received. It is sad to think that, in the nearly 50 years since Nirje (1970) espoused the principle of normalization, these concepts are still far from being commonplace. Nirje advocated that PWID should live in environments that would be normal for people without disabilities, including the normal rhythm of a day (e.g., when to awaken, eat, and dress). Normalization involves making choices about recreation, exercise, and who to interact with, for how long, and under what conditions—just like other citizens. According to Perske (2004), “normalization calls for living, learning, and recreating in facilities similar to those others in the community enjoy” (p. 148). Wolfensburger (1983) expanded on this to discuss PWID having valued social roles in the community including age-appropriate activities and schedules, social integration with community members who do not have disabilities, and the promotion of a valued sociosexual identity. It is clear that PWID are still not living the principle of normalization nor have they been given valued social roles in the community.
In our analysis, we found that adults with ID often feel controlled by others in their experiences of sexuality, and that they have desires and needs that are often not met. What makes these findings even more powerful is that this was true across multiple studies, multiple participants, and multiple countries. The findings of each individual study provided insight into the lives of PWID. Combined, these stories provide compelling evidence that adults with ID are restricted and controlled, but greatly desire connection and relationships. These themes appeared across 16 studies, with 271 participants from China, the United States, Europe, and Australia. These diverse participants often expressed the same desires, the same wishes, and the same frustrations.
There are several limitations present in the current study. First, despite multiple literature searches, we may have missed studies due to the search engines and search terms used. The search was also limited to articles published in English. This led to a narrower population of participants with a more Western cultural influence. The majority of studies were from the western Europe, Australia, and the United States.
There was also a large age range in participants. Generational differences may be present as well as regional differences with respect to how comfortable participants were in discussing intimate relationships. The younger participants spoke about their experiences with sexuality education rather than sexual relationship experiences. Some of the older participants may have experienced more restrictions that prevented developing intimate relationships. These are limitations to the study. We have tried to present a cross section of individuals from various parts of the English-speaking world. We do acknowledge that context of family, culture, religion, and generation greatly influence the experiences of participants across studies. We cannot generalize results from one study to another. We have sought only to report commonalities that were present in the various studies.
Next, bias exists in how we, the current researchers, interpreted the original authors' works. We were also limited to what was reported in the articles; we did not have access to the raw data. There also is bias present in the perspectives of researchers choosing to do this type of research and the type of questions asked and methods used. The studies reviewed focused on participation, voice, and empowerment of PWID. Therefore, this metasynthesis is not representative of typical research conducted on PWID. Many of the studies made a specific point to mention that the research was conducted with PWID.
Lastly, the participants included in the reviewed research studies were able to communicate using speech, they agreed to be interviewed and talk about sexuality, and many were part of self-advocacy groups. Therefore, the participants of these studies may represent a higher functioning, more open and more empowered population than many of their counterparts with intellectual disability who did not participate. Consent may have also played a role in who participated. Potential participants whose guardians did not want them to participate would not have been included. Therefore, our results may be missing the voices of a large part of the population who were not allowed to share their stories.
Suggestions for Future Research
Based on results of this metasynthesis, we suggest that more inclusive research be conducted where PWID are the researchers (Johnson, Minogue & Hopklins, 2014). Inclusive research and participatory action research could be used, not only to hear the voices of those with ID, but also to involve them throughout the entire research process (Bigby, Frawley & Ramcharan, 2014; Caldwell, 2014; Tregaskis & Goodley, 2005). Including the voices of PWID from conception of the research questions, to choice of participants and methods of collecting information, through to interpretation of the data may lead to different perspectives and produce research that more directly addresses concerns of this population. Including members of the population studied from start to finish may be a first step in closing the ever-present research to practice gap.
Another suggestion is to continue to conduct more metasynthesis research on studies regarding adults with ID. Qualitative studies by nature have smaller numbers of participants. Studies involving PWID, especially those examining sensitive issues such as sexuality, often have even smaller numbers. However, there are many researchers from different areas examining similar topics. One of the most common limitations listed in each of the studies was that the sample was not representative of the larger population of PWID. The individual studies reviewed cautioned against generalizing their results to those outside of their particular project. By combining these results together, researchers can continue to make the voices of participants in small studies heard so that these solo voices become a chorus.
Recommendations for Practice
The results synthesized here have strong implications for service professionals, program administrators, and policy makers. “Caregivers should expect people to want relationships and be prepared for a potential negative impact if they do not have the opportunity to form relationships or express their sexuality” (Rushbrooke et al., 2014, p. 539). Restrictive policies and practices disempower individuals. A lack of control over their lives can lead adults with ID to experience higher rates of mental health issues, isolation, and decreased quality of life (Lunsky & Benson, 2001; McVilly, Stancliffe, Parmenter & Burton-Smith, 2006; Scott & Havercamp, 2014). Although restrictive practices are sometimes seen as necessary to protect this vulnerable adult population, overprotection can have unintended negative consequences. It can lead to risky acts and unhealthy relationships on the part of the individual with ID, due to lack of awareness coupled with a desire to experience these relationships but feeling as if it needs to be done in secret (Healy et al., 2009). Change in policy should include awareness of the potential impact caregivers have on the relationships of those with ID (Rushbrooke et al., 2014). In addition, PWID need to be given opportunities to have a voice and to have choices in their lives. One participant asked, “Why are we being singled out for special treatment with secret special laws that do not reflect our opinions and have the effect of creating a barrier to our acceptance and inclusion” (Johnson et al., 2014, p. 82)? Clearly, the voices of those affected by policy decisions need to be heard.
Programs should focus on providing more opportunities for friendship development and interaction with others. Participants across studies wanted confidantes; they did not want to talk to parents or staff about sexuality and relationships issues. Professionals need to allow people with ID to talk with each other without hovering. Loneliness was a common theme for participants across the studies we analyzed. Therefore, parents and professionals need to recognize that isolation and loneliness can ensue as a result of overprotection. “The depth of emotional disconnection, isolation, and loneliness can be exacerbated by a culture of disability professionals who mistake activities and groups as inoculations to loneliness, missing opportunities to facilitate significant and real relationships for adults with ID” (Turner & Crane, 2016, p. 686).
Although many of the articles reviewed advocated for comprehensive sex education that promotes healthy relationships in addition to reducing risk and teaching safety skills, there is ambivalence regarding who is responsible for conveying this information (Löfgren-Mårtenson, 2012). Professionals providing sexuality education must be attuned to culture, religion, and family values on an individual and group basis when working with PWID, their families, and their caregivers. Professionals also must understand role expectations in the communities where they serve. In some communities, sexuality education may be delivered directly from professionals upon parent and/or caregiver consent. In other communities, professionals may need to enlist the support of cultural brokers, elders, and esteemed community members to assist families in delivering instruction.
Most sexuality education received by adults with ID is heteronormative and does not educate PWID about homosexuality, bisexuality, or transgender identity (Löfgren-Mårtenson, 2012). Azzopardi-Lane and Callus (2015) found that none of their participants wanted to discuss nonheterosexual desires and experiences, despite a few remarks about people falling in love with someone of the same sex. Fitzgerald and Withers (2011) reported that homosexuality had not been discussed with their participants. They did not know the meaning of terms related to sexual orientation and “some women had strong negative views about homosexuality, seeing it as wrong and horrible” (p. 7). In contrast, four of nine participants in Rushbrooke et al. (2014) explicitly mentioned sexual orientation in positive terms, as did all of the participants in Stoffelen, Kok, Hospers, and Curfs (2013).
Sexuality education often focuses on physiology, but not how to handle relationships. Löfgren-Mårtenson (2012) described sex education scripts as restrictive. When individuals are taught to wait or learn to say no, and the negative consequences of having a sexual relationship are taught without mention of physical or emotional pleasure, they are likely to internalize a negative sexual self-image. Fine and McClelland (2006) found that young people with disabilities were far less likely than their nondisabled peers to receive any kind of sexuality education. These authors stated, “with disproportionate histories of abuse and little in the way of home or peer guidance around sexuality, students with disabilities make clear the need for more information although they receive less” (p. 309). Stoffelen et al. (2013) stated that people with ID often lack training regarding which sexual behaviors are socially acceptable. This lack of training can potentially lead to concerns with putting PWID at higher risk of being victims of abuse (Martinello, 2014) and also of being perpetrators of abuse (Nezu, Greenberg, & Nezu, 2006).
PWID are sexually assaulted at a rate seven times higher than those without disabilities (Shapiro, 2018). The abuser is typically known by the victim, with 40% of abuse being committed by family (25%) or staff (15%; Cambridge et al., 2011). However, 50% of the abusers are other service users with intellectual disability (Cambridge et al., 2011). One word of caution regarding this report is that abuse by family and staff is more likely to be hidden, and abuse by other service users is more likely to be reported (Cambridge et al., 2011). Nevertheless, these statistics should sound the alarm for much more education and intervention regarding asking for and giving consent, appropriate and inappropriate touching, and how to build healthy relationships with peers and partners.
The results of our study argue for comprehensive sexuality education for youth with ID that includes discussions about desire, pleasure, appropriate dating behaviors, and the interpersonal skills needed to form long-term healthy relationships. Along with this, there is a need for programs and caregivers to recognize the direct desires of these individuals and to plan education and intervention accordingly. It is our hope that programs for PWID focus more on facilitating the creation and maintenance of friendships and romantic relationships, on helping the adults with ID learn how to speak up, and on the awareness of potential dangers regarding abuse and exploitation. These additions will help service providers and caregivers focus on creating more inclusive environments and programs for adults with ID to experience sexuality and intimate relationships in a more normative manner.
*References marked with an asterisk indicate studies included in the metasynthesis
An earlier version of this article was presented as a poster at the 2017 AAIDD Conference.
Black, R. S. (2017, June). Sex and relationships: Voices of adults with IDD. Poster presentation for the American Association on Intellectual and Developmental Disabilities 141st Annual Meeting, Hartford, CT.
Manuscript was not funded, was not part of a grant, and was not under IRB approval.