From the analysis of the results of the selected studies, several themes emerged, which will be explored in more detail proceeding in accordance with the two designated macro-categories mentioned above and which follow.
Severe mental illness (schizophrenia and psychotic disorders)
According to the DSM-5, schizophrenia and related psychotic disorders are defined as “disorders involving abnormalities in one or more of the following five domains: delusions, hallucinations, disorganized thinking (speech), grossly disorganized or abnormal motor behavior (including catatonia), and negative symptoms” [16].
Psychotic disorders represent a heterogeneous class of disorders whose severity of symptoms varies and this may predict important aspects of the illness, such as the extent of cognitive or neurobiological deficits, and its course, i.e. the possibility of remission and the impact on the overall quality of life [16]. The prevalence is estimated around 0.2% with the delusional disorder, subtype persecutory, on the top and it can occur in both young and adults [16].
Schizophrenia, as stated in the review of Larson et al. and according to the DSM-5, is a psychiatric disorder characterized by a disassociation from reality (psychosis), hallucinations (often auditory), a strong adherence to false beliefs (delusions), atypical thinking and behavior, limited emotional expression, decreased motivation, deterioration of mental functions (cognition) and impairment in daily activities, including work, social and self-sufficiency [6, 16, 10; 11]. It usually affects individuals at a young age and can lead to disability and long-term social problems. Schizophrenia is considered among the most severe clinical conditions in terms of its psychological, social and economic impacts on human life.
People with severe mental illness, often, suffer human rights violations and the stigma attached to this disorder is widespread in society; thus, that it is internalized by these individuals themselves and this has a significant impact on their self-esteem and on their ability to build meaningful emotional relationships that are functional to the expression of their own sexuality [13, 22, 10, 21]. This easily leads to marginalized conditions, further exacerbating the difficulties they face in their social relationships already compromised by the symptoms of the disease itself [13]. People diagnosed with a severe mental disorder tend to be more isolated, and have poorer social networks than does the general population, either because of psychotic symptoms themselves that make interactions with others difficult, or because of social stigma [10, 11, 8].
Many studies have shown that the needs for intimacy, love and sexuality, common to any human being, are, for these individuals, unrecognized and remain unmet despite evidence indicating that their desires, fantasies and need for romantic relations did not differ largely from those of the general population [10, 24, 15] and that having a meaningful emotional and romantic life correlates with a better prognosis and quality of life [14, 15].
Specifically, the sexual and reproductive health of this segment of the population, especially in adolescence and young adults, is particularly poorer than that of the general population and the reasons may be many, each of them interconnected with the others [10, 25]. In particular, there is evidence that, among young people suffering from a serious psychiatric disorder, the unfulfilled right to sexual and reproductive health leads to an increase in vulnerability, gender-based violence, sexual risk taking behavior such as unprotected sex, leading to a higher risk of STIs, unwanted pregnancy and abortion, sexual activity under the influence of drugs or alcohol, sexual and intimate partner violence or vulnerability to sexual coercion or assault and trading sex in exchange of goods especially in the case of individuals from socially and economically marginalized backgrounds [25, 26, 28, 1, 13]. Moreover, several specific dimensions characterizing psychotic disorders must be considered. In fact, illness, in the case of people with severe mental disorders, is a turning point as it challenges the identity these individuals had before, and it puts a strain on interpersonal relationships [24, 4]. A cycle exists where self-stigmatization fosters self-isolation which leads to decreased social functioning and results in an amplified stigma that negatively affects the emotional and sexual dimensions of these people’s lives. Furthermore, deficits in emotional, social, and cognitive skills are common and typical of the psychotic and schizophrenic spectrum disorders, and, in the majority of the cases, they are phenomenologically experienced as loss of one’s sense of self and loss of trust toward oneself, toward one’s own memories and feelings and others [10, 27, 11].
Sexual risk-taking behaviors
It is widely documented in the literature that people with a severe psychiatric disorder, particularly young people, engage in risky sexual behavior more frequently than does the general population and non-psychotic peers.
The study by Brown et al. revealed that among 69 participants with first-episode psychosis (including 37 males, 29 females and 3 different genders) aged 15 to 24 years, 78% reported being sexually active and among these participants, two-thirds reported not using condoms while more than one-fifth had experienced a pregnancy, most of whom were unplanned. The study also found that participants tended to be more sexually active when consuming drugs and that, in addition, those who were more sexually active were those with moderate psychotic symptomatology and sufficiently good psychic functioning who, therefore, exhibited adequate social skills to engage in relationships with others [25]. The review by Vickers et al. confirms what has been highlighted so far. In particular, they found that young people with psychosis are more likely to engage in sexual risk-taking behavior including drug consumption before an intercourse and inconsistent condom use, and they have a greater risk of STI especially HIV infection [26]. de Jager et. al., showed that during the positive phase of psychosis, 38% of the participants in their study reported an increase in sexual desire and that for the 18% of them, this increase was combined with a decrease in awareness with regard to their personal limits and their communication skills in relation to their needs, desires and boundaries, which made them more vulnerable to engaging in sexual risk-taking behaviors [36].
Similarly, a review by Schonewille et al. showed that among young teenage girls, unwanted pregnancies were a common occurrence and that young women with psychiatric disorders had a greater risk of contracting sexually transmitted diseases, incurring unsafe pregnancies and multiple partners throughout their lives [35]. In particular, Schonewille et al., point out that unwanted pregnancies among young women with severe mental illness can be caused by several factors including victimization, violence and sexual coercion and, not least, a reduced ability to plan pregnancies and to understand the importance of using contraceptive methods [35]. The same evidence can be found in the study by Adan-Sanchez et al. who noted that 26% of the young people with psychosis referred to their service had become pregnant and 95% of these pregnancies were unplanned. Specifically, this study investigated the incidence of risky sexual behaviors and related consequences in a sample of young people (15–25 years old) with mental health disorders attending a mental health service aimed at young people. The cross-sectional study was conducted through a survey and included 103 participants. 77.7% of the sample of young people had had sex, 63.8% indicated sexual activity within the last month, and 36.2% reported having more than three sexual partners in the last year. These rates were significantly greater than those reported in a national sample of secondary school students. However, the severity of mental health symptoms was not associated with high-risk sexual behaviors. Instead, the study showed that young people with mental health disorders were more likely to have a history of non-consensual sex and substance abuse. These factors were also associated with high-risk sexual behaviors and unwanted pregnancies, in line with the findings of the previous mentioned studies [28].
Sexual dysfunctions
A considerable body of research reports the prevalence of sexual dysfunction among individuals with severe psychiatric disease, including young individuals, compared to the general population. However, most of these studies have focused on the medical and biological dimension of the disorder, exploring very little of the psycho-social dimension that could also contribute to and explain sexual dysfunction in this segment of the population.
Although most sexual dysfunction is due to the side effects of antipsychotic drugs, Vickers et al., as well as Barchielli et al., indicate that a significant proportion of young people and adults with psychotic disorders experience sexual dysfunction that cannot be attributed to medication [26, 24].
In their study investigating sexuality and the impact of sexual dysfunction on the quality of life of individuals with psychosis, Barchielli et al. emphasized the importance of favoring a biopsychosocial approach in examining the sexuality of subjects with severe psychiatric pathology in order to bring out social and psychological, not only medical, aspects of these patients’ experience. They selected a sample of 46 patients with psychotic disorders (aged 18 years and older) and a control group of 52 healthy people and found that patients with psychosis, equally male and female, had higher scores for sexual dysfunction than did the control group and, on the other hand, they had lower scores on quality of sexual life, autoeroticism and couple sexuality. In particular, participants with a severe mental illness displayed a higher prevalence of premature ejaculation and reduced rates of orgasm satisfaction, absence of sexual desire and arousal, especially in the case of schizophrenia, greater difficulties in reporting sexual desires and in achieving and maintaining penile erection [24]. Similarly, in the study by de Jager et al. 14% of the participants reported a decreased or absent sexual drive during their psychotic episodes and in another study by de Jager et al. it was found that interviewees reported different sexual side effects, including impotence, erectile dysfunction, increased or decreased sex drive, disruption with either ejaculation or orgasm that appeared to be related to distance or intimacy with their partner. In fact, experiencing these unwanted symptoms and overcoming them, combined with therapy insights, facilitated them in experiencing increased openness, sociability, and trust towards others, which led to greater self-disclosure and an increased capacity for sexual responsivity. [36, 2].
In the study by Fanta et al., it was found that psychological factors related to the side effects of medications (e.g. obesity or prolactin secretion), not just the side effects of antipsychotic treatments themselves, largely influenced predisposition and openness toward social and sexual relationships. Moreover, among patients diagnosed with schizophrenia (422 in total aged from 18 and over), those who were single, unmarried, divorced, or widowed showed a higher propensity for developing sexual dysfunction compared to participants who were married or in a relationship. Additionally, individuals with a personal history of recurrent relapses were three times as likely to experience sexual dysfunction compared to those without such a history of relapses. This is because frequent relapses indicate a worsening of the disease with a predominance of negative symptoms (mostly avolition, anhedonia and blunted affect) that, as indicated by the authors, appear to negatively influence the sexual performance [37].
According to the study by Barchielli et al., the common element that could explain this predisposition of psychotic individuals to present sexual disorders concerns these subjects’ difficulty in managing intimacy and close relationships with others. This impairment predisposes these individuals to avoidance and self-victimization behaviors that disqualify them from establishing sexual and emotional relationships and feeling in their own way during a sexual interaction [24]. This evidence shows that it is the psychosis itself that leads to states of vulnerability with respect to the expression of sexuality, being itself one of the major causes of this impairment.
Personal and relational resources
Based on the assumption that personal resources play a key role in the establishment and maintenance of romantic and sexual relationships, Gerymski and Szelag analyzed the association between sexual well-being, illness acceptance and self-esteem in a sample of 60 Polish individuals with schizophrenia (29 men and 31 women) aged between 18 and 58 years. The findings of the pilot study are particular interest because the acceptance of the illness significantly affects the self-esteem and sexual well-being of individuals in this segment of the population; furthermore, self-esteem and acceptance of the illness help individuals cope with schizophrenia and maintain sexual well-being. Specifically, the study revealed that having a positive attitude toward oneself implied a significant acceptance of the difficulties and limitations that characterize the illness. Furthermore, self-esteem and illness acceptance were positively associated with sexual well-being as illness acceptance appears to influence physical, emotional and social well-being and thus also sexual desire and satisfaction, as well as the quality of intimate and sexual relationships. Specifically, regarding self-esteem the study revealed gender differences, as men with schizophrenia showed higher levels of self-esteem than women. According to the authors, this is because the course of the illness is more unfavorable for women who, therefore, experience greater difficulties in managing schizophrenia since the negative and positive symptoms manifest themselves with greater intensity among them than among their male counterparts [23].
Sexual expression is a significant factor in defining oneself, since expressing sexuality can contribute to a confirmed sense of gender identity, which is fundamental in self-esteem and identity. In their study included 28 participants diagnosed with psychosis between the ages of 22 and 62, de Jager et al. found that, despite the fact that 83% of the participants experiencing sexual feelings, those with a psychotic disorder were more likely to struggle with expressing their sexuality, revealing challenges about social skills that were mostly echoed in impairments in social cognition; these difficulties may lead to misunderstandings and reduced communication about sexual topics with partners (32%), and to limited access to sexual partners among unmarried participants (46%) [36].
The literature review of Stusiński et al. aims to focus on difficulties, needs and ability or inability that people suffering from schizophrenia experience in entering and maintaining dyadic relationships. Even if this disorder does not change relational needs, people with schizophrenia have many difficulties in creating intimate relationships since adolescence. This seems to be justified by the social withdrawal and lack of interest of these patients in intimate contact or lasting relationships, and also by a significantly lower “ability to love’’ that characterizes them. However, SCH patients reported sexual incompetence and lower sexual satisfaction, regardless of the duration of the illness itself or antipsychotic treatment. Because of psychotic symptoms that can alter the way patients perceive their partners, the relationships of people with SCH are characterized by a poorer quality and are less lasting. Furthermore, the creation and maintenance of relationships by individuals with SCH are differentiated by gender. Among people diagnosed with schizophrenia, women have less difficulty in creating and maintaining dyadic relationships, probably, in the authors’ opinion, due to the later onset of the disease and favorable socio-cultural patterns. Due to the later onset of the illness, women are more likely to acquire social skills, create relationships and be married before the changes caused by an active illness process occurrence. Among coupled individuals, being in a dyadic relationship is associated with a favorable course of the illness and better functioning of patients. From the present review, another verified assumption was that people with schizophrenia prefer to build intimate relationships with other patients with the idea of creating a balanced relationship providing acceptance and support. In fact, it appears that a successful relationship is a source of support and motivation to continue therapy. Research suggests that a romantic relationship has a positive impact on a range of outcomes, such as confidence and recovery, for people with psychosis. There is also evidence suggesting that for psychiatric inpatients, being single is associated with reduced self-esteem and higher internalized stigma. It is therefore plausible that having a romantic partner might improve social support and decrease loneliness, potentially leading to a reduced symptomatology [8].
A study by White et al. focused on a sample of 232 individuals with psychosis who self-reported that they had sought/received support for these experiences, and investigated whether satisfaction with the status of romantic relationships was associated with better well-being outcomes in people who experienced psychosis. Participants were eligible if they were at least 16 years old. The results suggested that for people in a relationship, criticism from the partner, and the psychotic person’s perception of it, were associated with relationship satisfaction. Precisely, those who perceived their partner as more critical had a lower level of satisfaction with their romantic relationship. In contrast, being in a relationship was positively associated by all participants with relationship status satisfaction and, in turn, these improved levels of relationship status satisfaction were linked to reduced psychotic symptoms and greater mental well-being. In fact, having a partner in a satisfying relationship can reduce loneliness by providing companionship and the feeling of being appreciated by others due to the adoption of the partner’s positive views that contribute to higher self-esteem. In contrast, feeling dissatisfied with one’s romantic situation has been associated with higher levels of loneliness, internalized stigma and lower self-esteem. In addition, being someone’s partner can be a valued aspect of identity. Therefore, being in a satisfying relationship and identifying as a “partner, boyfriend or girlfriend” are advantageous, especially since roles that require a high level of commitment are considered particularly beneficial but only when they are not stressful. For people with psychosis, assuming different roles may facilitate them in recognizing how mental illness is just a small part of their global identity, which may be helpful in contrasting internalized stigma. Additionally, identifying with different roles is associated to higher self-esteem [14].
The Hortal-Mas et. al. meta-synthesis of qualitative evidence noted that the sexuality of people living with serious mental illness (PLSMI) is mediated by several factors. The mental health problem itself can lead to complications; PLSMI face difficulties in understanding nonverbal communication and some people experience intrusive thoughts and/or hallucinations that prevent sexual intercourse, induce abstinence, or allow sexual relationships only under specific conditions. PLSMI often feel worried, frustrated, confused, lonely and disconnected from the rest of society, and the illness prevents them from establishing new relationships or hinders them from maintaining the existing ones. Having friendly relationships, but not intimate ones, worsens the perception of loneliness. Feelings of insecurity, sometimes triggered by a lack of experience in intimate relationships, lead them to prioritize others’ needs and please others against their convictions. Talking about sexuality is also perceived as shameful, especially by those who are sexually inactive, and having an intimate relationship is seen as an improvement or a last barrier to overcome, sometimes even as a return to a certain normality. While some PLSMI see sexuality as an expression of an emotional bond and of being in love, others prefer sexual relationships only to avoid the emotional burdens. Some PLSMI seek relationships with other PLSM because they feel that understanding is easier, but this could lead to more problems due to the risk of mutual interactions [9].
Similarly, in a qualitative study by de Jager et al. with a group of twenty-eight participants ranging in age from 22 to 62 with a psychotic disorder, emerged that the absence of a partner was shown to be the cause of their discontent with the intimacy level in their lives for the majority of interviewees. Being single and experiencing loneliness were considered hard to endure. On the other hand, several people have experienced that love, relationship issues or being heartbroken can trigger the symptoms’ onset. Consequently, partner characteristics such as “quiet” and “stable” were seen as desirable. Additionally, in the present study, it was found that having mental problem in both partners was considered beneficial, as it fosters mutual understanding and acceptance. Sometimes, having a partner who understands the reality of living with a mental disorder results in greater responsivity, nurturing deeper intimacy between partners. However, for some of the participants, the dynamic was reversed. If both partners have issues with mental health, they might unintentionally leave no room for the other partner in the relationship, compromising each other’s’ roles as partners. Furthermore, witnessing a psychotic episode can be an unsettling experience for partners, and the onset of psychosis can have a significant impact on the partner’s own mental wellbeing. In a state of confusion, some people affected by psychosis act or express themselves in ways that others find offensive; this might lead to feelings of shame after a psychotic episode, causing withdrawal from social interactions and furthering isolation, suggesting that boundaries and self-esteem play a crucial role in engaging in intimacy, relations, and related sexual processes [2].
The study of Cloutier et al., studied a sample of 196 participants aged 18 and older diagnosed with schizophrenia-spectrum disorder or mood disorder with psychotic features and identified how people with severe mental illness exhibit low social functioning, including issues with independent living, social relationships, and academic and working performance. Intimate relationships and sexuality appear especially challenging for this population, since many individuals with psychotic disorders face issues with dating and romantic ties, despite maintaining social relationships with friends and family. friends and family. The difficulties they face include deficiencies is social skills, attachment issues (i.e., fear of proximity or abandonment), and self-esteem issues [11].
Social stigma
Another important factor related to problems in the sexual sphere for individuals with a diagnosis of psychosis, is the social stigma of people with diagnoses of serious mental illness (DSMI), which can have a significant effect an individual’s personal experience and can lead to an internalized stigma. Societal stigmatization, which characterizes mental illness, negatively influences the perception of the individuals with psychiatric disorders as appropriate sexual partners, causing a decrease in self-confidence and self-efficacy of these people in important spheres of human experience, such as sexuality and intimacy [22].
Due to social stigma, people who experience psychosis may develop a “mentally ill, patient or service user” identity. Indeed, qualitative findings from the study of White et al. suggest that, due to their diagnoses, people with psychosis see themselves as undesirable partners, and higher levels of internalized stigma resulted to be associated to more severe symptoms in individuals with mental health conditions. [14].
The study conducted by de Jager et al. revealed that a significant majority (68%) of the participants encountered public stigma related to their psychosis. Additionally, more than one-third experienced rejection from friends and sexual partners following a psychotic episode or upon disclosing their diagnosis. Some participants internalized this stigma, viewing themselves as undesirable partners due to their vulnerability, resulting in sexual isolation. Consequently, many refrained from pursuing relationships, with 29% abstaining from sexual relationships for over 7 years [36].
Previous qualitative research by de Jager et al. showed that the possibility that their symptoms or their medication’s side effects, such as sweating or trembling, represents an added stressor in social situations. This frequently led to fearing being judged or perceived as “crazy” or “disabled” by others, strongly affecting self-esteem. In addition, most of the participants reported experiences of prejudice because of their mental health challenges and for some, these prejudices led to reduced social relationships. It is clear that those who had experienced stigma were more hesitant to socialize with others and had more trust issues. Openness about their mental illness was only possible when a foundation of trust was established. In other words, participants were more likely to share their experiences when they expected a positive response. In some cases, self-esteem was so extremely impacted that people avoided self-disclosure completely, withdrawing from social interactions or giving up on the possibility of intimacy totally. Because of prolonged social isolation, fueled by either social anxiety or psychosis symptoms, people reported feeling insecure about the dating scene. Eight interviewees (29%) identified their lack of dating experience as a barrier to creating intimate relationships. They described feeling inadequate in starting and maintaining conversations. There was a fear “of doing something wrong” during social interactions. This increases self-awareness and avoiding behaviors around social interactions, while lowering self-esteem [2].
The qualitative literature review by Grachev et al. aimed to explore the contribution of research that includes the gender perspective to analyze the sexual lives of women with a serious mental illness diagnosis, and to identify any barrier and impediments to sexual fulfillment. This review included studies which participants were adult women (18 + years) with a DSMI that met the diagnostic criteria of DSM-5. Findings indicate that stigma and self-stigmatization impact women with DSMI both at a micro-social level, through interactional processes, and at a structural level, because of institutional practices of sexual rights. For example, social stigma can significantly impact romantic relationships’ status, in relation to whether one wishes to disclose a mental health diagnosis to intimate partners and in relation to initiating and engaging in sexual activities. Furthermore, women with DSMI are seen as undesirable as romantic partners, resulting in a perception of reduced eligibility for marriage. In addition to the interpersonal effects of stigmatization, women with DSMI are also exposed to structural and intersectional stigmas, such as beliefs that mothers with DSMI are unable of parenting, if not even dangerous. This stigma affects mothers with DSMI, since they have to prove their parenting capacities and need to unreasonably fight for child custody. These women always experience the internalization of stigma that can lead to negative self-perceptions, such as low self-esteem, self-worth and self-confidence, and in perceiving themselves as unattractive. These negative perceptions ultimately produce issues in initiating and maintaining closeness and intimacy, and the pressure to conform to societal expectation can considerably affect sexual experiences. Furthermore, this review found that women with a DMSI are more prone to live experiences of sexual objectification and sexual abuse, when compared to women without a DSMI. In fact, women with DSMI disproportionately experience sexual abuse and exploitation by both strangers and partners than the general population, while the interpersonal impact of the objectification include women with DSMI reporting feelings of stigmatization because of their body size, especially since psychotropic medication has a side effect of weight gain. Moreover, the economic vulnerabilities that characterize individuals with psychiatric diagnoses, and among them mostly women, and the dependence on psychotropic drugs produce situations of dependence and need that force them to remain or engage in situations of exploitation or coercion (such as abuse from partners, sexual exploitation by a doctor or sex work, sexual intercourse without contraception despite the woman’s desire). This proves that women with DSMI are underprivileged at different levels (e.g., interactional and structural) because of the negative impact of psychosocial processes, including stigmatization. These processes oppress and repress women with DSMI, especially their sexuality and sexual experiences. While stigma might not have been necessarily discernible, it undoubtedly has a crucial role in fostering vulnerability for women with a DSMI. Stigma is invisible yet consequential for these women and it pervades many of their sexual experiences [22].
In line with the studies described above, Budziszewska et al. found that individuals with diagnoses of schizophrenia are one of the most stigmatized groups; 27% of them experienced discrimination and 55% anticipated it. This stigma is also internalized with the belief that others do not want to have a schizophrenic partner. Young patients linked love to normality and recovery but believed that romantic relationships were incompatible with psychosis. Social stigma and self-stigmatization cause people with schizophrenia to be seen or to see themselves as undesirable partners, and poverty, as a consequence of the illness, has a deterrent effect on establishing and maintaining relationships, becoming part of a cross-sectional stigma. Additionally, they noted that women with schizophrenia are at risk of sexual abuse more than their male counterparts are, and their experiences risk to remain unseen [27].
Sexual orientation and gender identity
The relationship between gender identity and sexual orientation in association with a diagnosis of severe mental illness has rarely been studied, although, in more recent years than in the past, there has been a greater incidence of LGBT + individuals and gender non-conforming individuals with serious psychiatric illness.
de Jager and McCann’s review of the literature revealed that in psychotic individuals, the phases of the illness in which positive symptoms prevail may coincide with a loosening of the symbolic boundaries associated with gender and sexual orientation, which may lead to experience, in the phases following the stabilization of these symptomatology, states of confusion regarding sexual orientation and gender identity or even feelings of shame in cases in which intimate and sexual relations with same-sex individuals have taken place during hallucinatory and delusional states [15]. This was confirmed in a subsequent study by de Jager et. al., who showed that in addition to changes in libido and the ability to communicate one’s needs, the occurrence of an episode of psychosis appears to have an effect on sexual identity. In particular, a number of participants in this study explained that during a psychotic episode they lose contact with reality and, because of their state, they experience an unstable self-perception, doubts and nervousness around their sexual orientation (18%) and gender identity (7%). For some of them, these feelings led to experimenting with same-sex sexuality during a psychotic episode, while for others this led to experience shame and confusion as well as lingering doubts [36].
In the qualitative study of Barker et al., which focused on a sample of 19 patients, young women and gender-diverse people who experienced early psychosis, including cisgender women, transgender women and non-binary people (no transgender men were found), it was found that gender identity and sexual orientation can intersect with psychosis in various ways and, sometimes, that gender identity is wrongly attributed to psychosis. For some of the participants, indeed, gender identity and sexual orientation were completely separated from their psychosis; for others they intersected causing self-doubts. This allows us to observe how psychosis can significantly undermine one’s own sense of credibility and reliability, even in relation to self-knowledge [13].
The Hortal-Mas et. al. meta-synthesis showed that the sexual agency of people with severe psychiatric illness belonging to the LGBT community is affected by a double stigma due to being part of two minority and stigmatized groups. In particular, they highlighted how this double stigma is common and how it is further aggravated by the social isolation that characterizes this segment of the population. Sometimes these individuals choose to hide their identity or sexual orientation. Some people hide a part of their identity, usually psychiatric illness, because they feel it is more complicated for it to be accepted than sexuality and sexual orientation. On the other hand, other people attribute the rejection, especially from family members, consequently to the disclosure of their sexual orientation or gender identity as the cause of their mental health problems. Moreover, the health care system and health care providers often perpetuate and exacerbate this double stigma because they lack experience in caring for LGBT people with serious mental illnesses; in fact, individuals with psychiatric pathology belonging to the LGBT community stated that, in contact with health care systems, they felt that they were treated as if they had a disorder and not as a whole person [9].
Intellectual disability (ID) and Down syndrome
According to the DSM-5, intellectual disability is a “disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social and practical domains” [16]. This terminology has recently been used to replace the previous term “mental retardation”, and it is well accepted and broadly adopted by educational, medical and other professions, as well as the general public and activist groups. According to the World Health Organization (WHO) ICD-11, these disorders are considered “intellectual and developmental disorders”, and they can both be considered equivalent [17].
As suggested by the DSM-5 [16], intellectual disability is a complex condition with various origins, that may be linked to challenges in social judgments, in risk assessment, in management of behavior and emotions or interpersonal relationships. The communication difficulties found in individuals affected by this type of disorder can predispose them to disruptive or aggressive behavior; furthermore, the attitude of gullibility, which is typical of this clinical condition, makes them inclined to depend on others in judgments and perceptions, leading to an overall attitude of social naivety. Therefore, naivety and lack of awareness of risk can lead to exploitation by third parties, victimization and the danger of physical and sexual abuse.
The most common cause of genetic-based intellectual disability is Down syndrome, a genetic condition which is caused by an either full or partial extra copy of chromosome 21 [29, 19]. The percentage of individuals with Down syndrome worldwide differs, but the approximate estimate is approximately 1 in 700-1,000 live births and these numbers may vary based on geographical and demographic factors [29].
Although the society often views people with intellectual disabilities as having no sexual desires, or as being asexual, this segment of the population shares the same desire for sexual and intimate relationships as their peers without ID [18, 19, 20]. According to the World Health Organization and the American Association on Intellectual and Developmental Disability in collaboration with The Arc, sexual health and well-being are integral parts of a person’s overall well-being despite possible conditions of disability [39, 40]. Given this, people with IDs have the right, like others, to affirm and live their sexuality in a climate of respect and tolerance, which is also reflected in the possibility of receiving appropriate education on sexuality and reproductive choices.
However, generally, people with ID and Down syndrome, especially young adults and adolescents, are being denied this important opportunity because they are seen as eternal children, even if they experience puberty and sexual maturity as well as their typical developmental peers and peers with other disabilities [18, 19, 21, 20]. This is due to a misperception that the wider society and families tend to reproduce as normal; namely, people with intellectual disabilities are ungrown children whose cognitive, emotional and personal development has remained at an immature and infantile, hence pre-genital, stage [30].
Many studies [31, 18, 19, 21, 20, 32] indicate that individuals with Down syndrome and ID receive less sex education than non-disabled and autistic peers despite the fact that, compared to them, they show greater interest in social interactions and exchanges, even with unknown individuals, making them more vulnerable and at risk of victimization [21, 33].
Faught et al. highlighted that young individuals and children with Down syndrome tend to display increased interest in human relations and lower levels of anxiety when interacting with unfamiliar peers; and, additionally, they are more prone to misinterpret as friends those who are not. In their study, in fact, it emerged that the group of 6 US young girls with Down syndrome selected showed perplexity in understanding the abstract concept of sexuality, and above all, they struggled to recognize social boundaries that make some interactions with strangers acceptable, while others did not [18].
In the exploratory study of Palomer Music et al., a convenience sample of 6 adolescents (3 boys and 3 girls) with Down syndrome was interviewed with the aim of collecting information on their knowledge regarding sexuality, puberty, intimate relationships and reproduction. Young participants held little interest and knowledge about sexuality, body changes and intimate relationships. In particular, when questioned about concepts of child development, they were able to recognize body parts and identify genitalia by differentiating them according to gender; however, they were not able to demonstrate sufficient knowledge of the human reproductive process or a greater understanding of the reproductive functionality of their genitals [19]. Furthermore, there were significant gender differences suggesting that girls were more infantilized than their male counterparts who, on the other hand, appeared to have more knowledge, interest in the topic and access to more sources of information in addition to the family, which, according to the scientific literature [18, 19, 21, 20, 32], is considered the primary source of information regarding sexuality and intimacy for these people. Notably, the girls in the study still identified themselves as children, although all of them were already at an advanced stage of pubertal development [19].
Differences associated with gender stereotypes also stood out, such as the ban on having relationships emphasized in the discourse of the girls, in contrast to boys, who instead expressed a more natural and fluid relationship with their bodies and a conception of sexuality linked to affection and pleasure. According to the authors [19], this might indicate that the girls in the study received a more forbidding and uninformed education from their entourage, whereas the boys were provided with more information about sexuality, including erotic and pleasure dimensions, in their relationship with the body. In addition, the word masturbation did not emerge in the participants’ stories, although reference was made to touching one’s private parts, demonstrating the limited lexical repertoire relating to sexuality.
On the other hand, the review of Walters & Gray showed that masturbation can turn into a problematic behavior in the case of individuals with ID due to their limited social skills, especially those who have severe impairment, as it can occur without control in public spaces where it is not tolerated [20].
All these findings, also in accordance with the studies by Baines et al. and Walters and Gray, are concerning because they highlight how young people with intellectual disabilities and Down syndrome, especially those with mild or moderate degrees of impairment, tend to experience the same sex life as people with typical development [32, 20].
In particular, the study by Baines et al., focused on a representative sample of young people with mild/moderate intellectual disabilities in England and reveled that most of them had sex before the age of 20 and, for the most part, had unsafe intercourses, with the young girls presenting a realistic possibility of becoming pregnant and contracting STIs, due to a lack of information about sexuality, contraception and human reproduction [32].
Considering this evidence, it is clear that there is a need to invest in developmentally appropriate sexual health education that provides adolescents and young adults with ID and Down syndrome with the necessary information to live a safe and responsible sexual and relational life [34].