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Corresponding author William Kokay BSW, Sydney School of Health Sciences, Faculty of Medicine and Health, Susan Wakil Health Building (D18), Western Ave, University of Sydney, Camperdown, NSW 2006, Sydney, Australia.
To systematically review how sexuality is experienced by lesbian, gay, bisexual, transgender, queer or questioning, intersex plus (other gender identifies and sexual orientations) (LGBTQI+) persons living with chronic disease.
Data Sources
PsycINFO, Embase, MEDLINE, Scopus, Cumulative Index to Nursing and Allied Health, and Web of Science were searched from date of inception to November 2021 for English language publications. Reference lists of relevant publications were also searched.
Study Selection
Eligible studies reported on sexuality among LGBTQI+ persons living with chronic disease. The search yielded 12,626 records; 665 full texts were assessed for eligibility and 63 documents included (59 unique studies). Study quality was rated using the Mixed Methods Appraisal Tool.
Data Extraction
Characteristics of included studies were recorded independently by 2 authors. Differences were resolved through discussion or with a third author.
Data Synthesis
A sequential, exploratory mixed-studies approach was used for synthesis. Pooled analysis indicated that among gay and bisexual men living with prostate cancer, 68.3% experienced erectile dysfunction and 62.9% had insufficient quality of erection to engage in anal sex. Among gay and bisexual men living with HIV or AIDS, 29.3% experienced loss of libido and 25.3% experienced erectile dysfunction. Although sexual dysfunction was common, LGBTQI+ persons had difficulty accessing appropriate sexual counseling and identified negative attitudes and heteronormative assumptions by health care providers as significant barriers to sexual health. Interventions to address sexuality focused entirely on reduction of risky sexual behavior among men living with HIV or AIDS. Women, transgender persons, and intersex persons were largely excluded from the research studies.
Conclusions
Current understandings of the effect of chronic disease on LGBTQI+ sexuality are limited and mostly focus on the male sexual response. LGBTQI+ persons who experience difficulty with sexuality struggle to identify appropriate services, and there is an absence of evidence-based interventions to promote sexual health and well-being in this population.
The most common chronic disease groups are (1) arthritis; (2) asthma; (3) back pain; (4) cancer; (5) cardiovascular disease; (6) chronic pulmonary disease; (7) diabetes; (8) chronic kidney disease; (9) osteoporosis; and (10) mental health conditions.
Addressing sexuality among people living with chronic disease and disability: a systematic mixed methods review of knowledge, attitudes, and practices of health care professionals.
Addressing sexuality among people living with chronic disease and disability: a systematic mixed methods review of knowledge, attitudes, and practices of health care professionals.
This reflects a pervasive belief that, even for professionals who acknowledge sexuality, moving beyond heterosexual forms of sexuality is “going too far”
Existing research only addresses a small number of chronic diseases, excluding those living with other conditions. Many studies focus on erectile function neglecting broader aspects of sexuality. Furthermore, the methodological quality of studies is limited. Most use nonprobability recruitment methods, have small samples, and rely on measures of sexual dysfunction designed for heterosexual men.
Self-reported sexual difficulties and their association with depression and other factors among gay men attending high HIV-caseload general practices in Australia.
it is likely those who are at the intersection between chronic disease and diverse sexuality face greater barriers and discrimination than other people in relation to sexual and reproductive health. However, to date, there has been no attempt to synthesize data from existing studies. This is needed to generate an understanding of how sexuality and chronic disease are experienced by people with diverse sexualities and, if necessary, to guide future practice in this area. Therefore, the aim of this research was to systematically review how sexuality is experienced by people who identify as gender and sexual minorities, that is, gender and sexual identities other than cis-gender heterosexual, and are living with chronic disease.
Methods
We conducted a sequential, explanatory mixed-studies review. Design and reporting of the review followed the critical appraisal framework developed by Hong and Pluye.
The review was prospectively registered. (PROSPERO Registration No.: CRD42020156260).
Search strategy
Systematic searches of PsycINFO, Embase, MEDLINE, Scopus, Cumulative Index to Nursing and Allied Health, and Web of Science were conducted from date of inception in November 2021. Search terms, along with an example of the search strategy used for MEDLINE can be seen in online appendix 1. Eligible studies were published in English, included adults (older than 18 years) who identified as LGBTQI+ and were living with chronic disease, and addressed 1 or more aspects of sexuality. Search results were combined, and duplicates were removed before screening. Two reviewers completed independent evaluations of the titles, abstracts, and full-text articles to ensure eligibility. To reduce reviewer expectation bias, all reviewer decisions were blinded. Conflicts were resolved by a third reviewer.
Data extraction
Data extraction was completed using a study-specific checklist, which included (1) study design; (2) primary research question; (3) sample characteristics; (4) data collection methods; (5) data analysis; and (6) key results or findings. To maintain consistency of data extraction, the first author completed data extraction independently. Data were then cross-checked and verified with the original text by a second author. Where differences occurred, the authors returned to the original text and discussed discrepancies before coming to a final agreement.
Quality of evidence
Methodological quality of included articles was assessed independently by 2 authors using the Mixed Methods Appraisal Tool,
Discrepancies in scoring were resolved by returning to the original study and through discussion with all authors.
Data synthesis
Included articles were grouped according to use of qualitative, quantitative, or mixed methods. There were sufficient studies with similar outcomes for 3 meta-analyses focusing on (1) loss of libido; (2) erectile dysfunction; and (3) problems with ejaculation and orgasm. Quantitative articles and quantitative components of mixed-methods studies were examined for the proportion of participants who reported each of these conditions. Data relating to each aspect of sexual dysfunction were combined. Because each of the studies provided information about aspects of sexual dysfunction in a different population, we used a random-effects model. Heterogeneity among the studies was determined using Cochran's Q statistic and I2 values. The I2 values measure the percentage of variability across studies because of heterogeneity, with values of 25%, 50%, and 75% indicating low, moderate, and high heterogeneity respectively.
Analysis was completed using Comprehensive Meta-analysis software.a
Although studies reported on other aspects of sexuality, the wide range of concepts and measures presented prevented further pooling and meta-analysis of data. Consequently, we used a narrative synthesis to explore which dimensions of sexuality were affected by chronic disease and to understand factors which influenced this effect.
Informed by the quantitative findings, we conducted a thematic synthesis
of qualitative articles and qualitative components of mixed-methods articles. For each article text, labeled “findings,” “results,” and “discussion” were uploaded into NVIVO Pro 12 software.b Text was coded independently by 2 authors, themes and interpretations were discussed between all authors, and then consensus was reached. Rigor was enhanced by returning to the original data source to confirm the accuracy of interpretation and through discussion of emergent findings by all authors.
Results
Initial searches identified 18,954 articles. An additional 4 articles were identified through hand searching. After removal of duplicates, 12,626 articles were screened for inclusion. In total, 63 articles (representing 59 unique studies) were included in the review. Figure 1 summarizes the flow of articles into and out of the review.
Effect of chronic disease self-management program on the quality of life of HIV-infected men who have sex with men: an empirical study in Shanghai, China.
Combined, the quantitative articles included 9150 male participants and 240 female participants. No studies reported including participants who identified as intersex or transgender.
Of the included quantitative and mixed-methods studies, 15 were conducted in the United States.
Depression and sexual dysfunction among HIV-positive and HIV-negative men who have sex with men: mediation by use of antidepressants and recreational stimulants.
Self-reported sexual difficulties and their association with depression and other factors among gay men attending high HIV-caseload general practices in Australia.
Effect of chronic disease self-management program on the quality of life of HIV-infected men who have sex with men: an empirical study in Shanghai, China.
Self-reported sexual difficulties and their association with depression and other factors among gay men attending high HIV-caseload general practices in Australia.
Effect of chronic disease self-management program on the quality of life of HIV-infected men who have sex with men: an empirical study in Shanghai, China.
Depression and sexual dysfunction among HIV-positive and HIV-negative men who have sex with men: mediation by use of antidepressants and recreational stimulants.
Health-related quality of life, psychological distress, and sexual changes following prostate cancer: a comparison of gay and bisexual men with heterosexual men.
Self-reported sexual difficulties and their association with depression and other factors among gay men attending high HIV-caseload general practices in Australia.
Depression and sexual dysfunction among HIV-positive and HIV-negative men who have sex with men: mediation by use of antidepressants and recreational stimulants.
Self-reported sexual difficulties and their association with depression and other factors among gay men attending high HIV-caseload general practices in Australia.
Among this group, random-effect pooled data indicated that 29.3% of people (95% CI, 16.5-46.4; P<.001) reported loss of libido (fig 2), with very high between-study heterogeneity indicated by Cochrane's Q of 232.474 and I2 score of 98.23.
Fig 2Random-effects pooled data on proportion of men with HIV/AIDS (event rate) reporting loss of libido.
Self-reported sexual difficulties and their association with depression and other factors among gay men attending high HIV-caseload general practices in Australia.
Depression and sexual dysfunction among HIV-positive and HIV-negative men who have sex with men: mediation by use of antidepressants and recreational stimulants.
Depression and sexual dysfunction among HIV-positive and HIV-negative men who have sex with men: mediation by use of antidepressants and recreational stimulants.
random-effect pooled data indicated that 68.3% of men (95% CI, 57.2-77.7; P<.002) experience erectile dysfunction (fig 3), with high between-study heterogeneity indicated by Cochrane's Q of 15.234 and I2 score of 80.42.
Fig 3Random-effects pooled data on proportion of men with prostate cancer (event rate) reporting erectile dysfunction.
Self-reported sexual difficulties and their association with depression and other factors among gay men attending high HIV-caseload general practices in Australia.
random-effect pooled data indicated that 25.3% of men (95% CI, 14.2-40.9; P<.001) reported erectile dysfunction (fig 4), with very high between-study heterogeneity indicated by Cochrane's Q of 115.344 and I2 score of 96.5.
Fig 4Random-effects pooled data on proportion of men with HIV/AIDS (event rate) reporting erectile dysfunction.
Random-effects pooled data indicated that 62.9% of men (95% CI, 26.3-88.9; P<.002) reported insufficient quality of erection to participate in insertive anal sexual intercourse (fig 5). There was high between-study heterogeneity indicated by a Cochrane's Q of 15.323 and an I2 score of 80.42.
Fig 5Random-effects pooled data on proportion of men with prostate cancer (event rate) reporting insufficient quality of erection to engage in insertive anal sex.
Several studies reported difficulties with ejaculation and orgasm, including premature ejaculation, failure to orgasm during insertive anal sexual intercourse, and difficulties ejaculating when masturbating.
Self-reported sexual difficulties and their association with depression and other factors among gay men attending high HIV-caseload general practices in Australia.
Random-effect pooled data indicated that 40% of men (95% CI, 24.2-57.9; P<.001) experienced difficulties with ejaculation and orgasm (fig 6), with very high between-study heterogeneity indicated by Cochrane's Q of 99.244 and I2 score of 95.9.
Fig 6Random-effects pooled data on proportion of men (event rate) reporting difficult with orgasm and ejaculation.
Depression and sexual dysfunction among HIV-positive and HIV-negative men who have sex with men: mediation by use of antidepressants and recreational stimulants.
Self-reported sexual difficulties and their association with depression and other factors among gay men attending high HIV-caseload general practices in Australia.
and in most cases led a reduction in sexual pleasure. For some men living with prostate cancer, pain and discomfort during anal intercourse was managed by changing from being the insertive partner,
found that 80% of men were offered input relating to sexual changes after treatment for prostate cancer; however, no details were provided regarding the nature of these services.
Interventions to address sexuality
Four studies reported interventions to address sexuality among people living with HIV or AIDS.
Effect of chronic disease self-management program on the quality of life of HIV-infected men who have sex with men: an empirical study in Shanghai, China.
Effect of chronic disease self-management program on the quality of life of HIV-infected men who have sex with men: an empirical study in Shanghai, China.
Two studies reported evaluations of a group-based peer-led counseling intervention designed to promote a positive sense of well-being and reduce transmission of HIV.
found that participants in the group program reported a reduction in condomless anal sex and in sexual compulsivity compared with a control group. After adaptation, Alvarado et al
found that the same intervention was culturally acceptable for use with men in Colombia, although the effectiveness of the intervention was not evaluated. Among men in China, Zhang et al
Effect of chronic disease self-management program on the quality of life of HIV-infected men who have sex with men: an empirical study in Shanghai, China.
reported that participation in a group-based chronic disease self-management program over a 12-month period resulted in increased condom use. Finally, Serovich
reported on a 12-month program to support men who are HIV-positive make decisions about disclosing their HIV status. After intervention, participants reported a decreased frequency of condomless sex.
Qualitative articles (n=30)
The 30 qualitative articles included 444 nonheterosexual men, 65 nonheterosexual women, and 4 transgender persons from 28 unique studies. No intersex persons were included. Most studies were conducted with people living with cancer (n=12)
The effects of radical prostatectomy on gay and bisexual men's mental health, sexual identity and relationships: qualitative results from the restore study.
The effects of radical prostatectomy on gay and bisexual men's mental health, sexual identity and relationships: qualitative results from the restore study.
Two analytical themes were central to the experience of sexuality for LGBTQI+ persons living with chronic disease and disability: “Expression of sexuality is shaped by experiences of discrimination” and “Chronic disease and disability results in an unreliable and unpredictable body.”
Analytical theme 1
Expression of sexuality is shaped by experiences of discrimination This theme refers to the ways in which people who are LGBTQI+ and living with chronic disease experience multiple layers of discrimination. This discrimination manifests itself in the form of discrimination relating to sexual identity as well as discrimination related to disability.
Discrimination because of sexual identity
As a sexual minority group, LGBTQI+ people living with chronic disease struggle to access relevant information and support about sexuality or to identify health care practitioners who are willing to address sexuality with nonheterosexual clients.
For many people, if information about the effect of a particular disease on sexuality was offered, such information was directed toward heterosexual people and failed to address topics of relevance to sexual minorities.
Being provided with advice based on a heteronormative understanding of sexuality was not only unhelpful from a practical perspective but also contributed to feelings of exclusion and aloneness.
Health care professionals appeared to lack knowledge and be uncomfortable about addressing sexual dysfunction among LGBTQI+ persons and so were limited in their ability to respond to the need of sexual minorities.
People experienced frustration and dissatisfaction with the lack of education, information, and interventions provided by health care professionals in relation to LGBTQI+ sexuality.
Health care professionals displayed discomfort and unwillingness to address LGBTQI+ sexual concerns. “He made the joke, it [digital rectal examination] wouldn't be painful for me . . . I can remember word for word, he said, ‘Well somebody like you, it won't make a lot of difference to somebody like you.’”
that appeared to prevent LGBTQI+ persons from sharing the extent of their concerns about sexuality with specialist practitioners and instead relying on sexual clinics for information.
However, this was not always a satisfactory solution because sexual health clinics primarily focus on sexually transmitted disease rather than the effects of chronic disease. “He was not ‘out’ to his endocrinologist and visited a specialist sexual health clinic for gay men when being screened for sexually transmitted diseases (STD) . . . . The gay health clinic in [name of city] seems to operate exclusively for the testing of STDs.”
Not all professionals were unwilling to discuss sexuality. Where health professionals demonstrated knowledge and comfort in discussing LGBTQI+ related sexuality, participants were able to ask questions, seek clarification and disclose accurate information to their health providers.
Discrimination from others because of illness or disability
In addition to the discrimination experienced because of sexual identity, many people also experienced discrimination from others that was attributed to the presence of illness.
Depression and sexual dysfunction among HIV-positive and HIV-negative men who have sex with men: mediation by use of antidepressants and recreational stimulants.
For some, the stigma associated with illness was seen as more challenging than stigma associated with sexual identity. “Being a lesbian with experience of mental illness, it's like a double coming out . . . I was used to coming out as a consumer, and I think it's a much harder thing than coming out as a lesbian, in terms of stigma and discrimination.”
Fear of discrimination appeared to influence decisions about if, when, and how to disclose one's status as a person living with a chronic disease to new partners.
For example, among studies of people living with HIV and diabetes, participants consistently described either experiencing rejection or fearing rejection when attempting to form new relationships.
“Telling new partners about their diabetes was a hurdle at the beginning of any new relationship and disclosing this information early on was described as increasing their risk of rejection.”
Furthermore, people living with chronic disease also reported high levels of internalized stigma, which had a negative effect on their self-confidence and led to reluctance to explore new relationships.
Among sexual minority men who are HIV-positive, serosorting (selecting sexual partners of the same HIV status) allowed for less rejection, less stigma, and in some cases a freer sense of sexual expression. “That was kind of the one group of people [other men who were HIV-positive] where it felt entirely safe in all senses of the word.”
For others, however, discrimination associated with illness could not be managed and resulted in feelings of exclusion from the wider LGBTQI+ community and reduced opportunities to form intimate relationships.
Analytical theme 2: Chronic disease and disability results in an unreliable and unpredictable body
An unreliable and unpredictable body
Chronic disease resulted in a changed body that had the potential to look and behave in ways that were not always predictable or desirable. Among men living with prostate cancer, climacturia after radical prostatectomy was a deterrent to sexual activity.
“Never quite know what the end result is going to be, so what may start out with all good intentions . . . next things turn into the bed is all wet, sheets are a mess, you know, everyone feels horrible.”
For men living with diabetes, the potential for hypoglycemia meant that sexual activity was often interrupted or abandoned to manage blood glucose levels.
and participants reported that these aspects of chronic disease resulted in loss of interest in sexual activity and sexual pleasure. “When I actually climaxed I got a headache . . . it certainly wasn't a pleasant sensation.”
For some, treatments resulted in unwelcome body changes that had to be managed. Changes in body weight associated with medication were reported by both men and women
and were associated with feelings of shame and perceived loss of sexual desirability. “I still absolutely hate the way I look . . . it's incredibly distressing. I feel a lot of my potential may have been ruined because of that drug.”
For 1 participant use of an ileostomy bag prompted sexual exploration and experimentation resulting in a shift in perspective from, “I did not want anyone to see it [ileostomy bag]”(p543) to, “I'd have electrical tape and I'd tape it down, it was sort of sexy, ya sort of hot ya.”
Depression and sexual dysfunction among HIV-positive and HIV-negative men who have sex with men: mediation by use of antidepressants and recreational stimulants.
Inability to obtain and sustain an erection of sufficient quality had both practical implications regarding sexual activity but also affected sense mood, confidence, libido, relationships, and identity of gay men. “Not so much the physical side, but it stresses your—self-worth, you lose your sense of self-worth. You lose your confidence.”
and for most, this was directly linked to the importance of an erection as a symbol of sexual desire and a means of sexual communication, particularly in the context of casual sexual encounters. “In ongoing relationships, participants found ways of communicating desire and pleasure through touch or talk. However, this was described as more difficult in the context of casual sex, where ‘if you're not putting out all signs that you might be interested then people get the wrong message.’”
For many, reduction in volume of ejaculate and duration of orgasm were particularly challenging and were associated with loss of ability both to give and receive sexual pleasure.
Depression and sexual dysfunction among HIV-positive and HIV-negative men who have sex with men: mediation by use of antidepressants and recreational stimulants.
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