Abstract
Objective
Individuals with psychosis are at elevated risk of adverse sexual and reproductive health (SRH) outcomes, and not receiving adequate SRH care. SRH is important for youth, yet little is known about SRH care access and experiences among those with early psychosis. This study explored SRH care experiences among women and nonbinary individuals with early psychosis.
Method
We conducted semistructured qualitative interviews with 19 service users (cisgender and transgender women, nonbinary individuals) receiving care in 2 early psychosis programs in Ontario, Canada. We also conducted semistructured interviews and focus groups with 36 clinicians providing SRH or mental health care to this population. Participants were asked about SRH care access/provision experiences and the interplay with psychosis. Using a social interactionist orientation, a thematic analysis described and explained service user and clinician perspectives regarding SRH care.
Results
Amongst both service users and clinician groups, common themes developed: (a) diversity of settings: SRH services are accessed in a large range of spaces across the health care system, (b) barriers in nonpsychiatric SRH care settings: psychosis impacts the ability to engage with existing SRH services, (c) invisibility of SRH in psychiatric settings: SRH is rarely addressed in psychiatric care, (d) variability of informal SRH-related conversations and supports, and cutting across all of the above themes, (e) intersecting social and cultural factors impacted SRH services access.
Conclusions
SRH is important for health and wellbeing; improvements are urgently needed across the healthcare system and within early psychosis programs to meet this population's multifaceted SRH needs.
Introduction
Psychotic disorders affect up to 3%–3.5% of the population over the lifetime, 1 and can impact many aspects of health and wellbeing. Within the realm of sexual and reproductive health (SRH), psychosis can lead to a range of issues including impaired sexual function and satisfaction, difficulties initiating and maintaining relationships, and vulnerability to sexual and intimate partner violence.2,3 The reasons underpinning these adverse SRH outcomes are multifactorial and include the direct impacts of psychosis (e.g., vulnerability during acute psychosis), associated negative and cognitive symptoms (e.g., social cognition impacting relationships), medication side effects (e.g., antipsychotic-associated sexual dysfunction), and social factors (e.g., psychosis-related stigma).2–4 As well, Canadian data has shown that childbearing individuals with psychosis are at elevated risk for rapid repeat pregnancy and induced abortion,5,6 and they have additional reproductive considerations including managing potential medication- and psychosis-associated risks during pregnancy and postpartum.
Individuals with psychotic illnesses are also at risk of having inadequate SRH services (e.g., lower cervical cancer screening rates). 7 Existing research suggests reasons for this gap may include negative symptoms of psychosis (e.g., avolition) impacting engagement in care, provider discomfort delivering SRH care to this population, and incorrect assumptions that clients are not sexually active.8–10 There has been a minimal exploration of SRH care access in this population and potential reasons for care disparities; a better understanding is needed in order to improve outcomes.
Psychotic disorders typically develop during late adolescence and early adulthood, 11 often a period of distinct SRH-related activities such as identity exploration, dating, and reproductive planning. Youth with psychosis face significant risks during this time including elevated rates of sexually transmitted infections, higher-risk sexual behaviour, and sexual and relationship dysfunction.12–17 However, most research on SRH and psychosis has focused on older populations and most psychosis-specific SRH interventions have not been youth-focused.18–20 Ensuring that young people with psychosis have access to tailored, high-quality SRH care is crucial to improve health trajectories, yet little research has explored SRH care experiences in this population.
This study aimed to understand experiences of SRH care access and utilization among young people with early psychosis. Given the unique SRH considerations related to both sex (e.g., pregnancy) and gender (e.g., gender-based violence 21 ), we focused on those who identified as a woman, nonbinary, or along a femme-identifying spectrum or who were assigned female at birth. To understand care experiences from multiple perspectives, we also engaged clinicians who provide SRH and mental health care to this population.
Methods
Study Design
This study was part of a broader research project exploring SRH experiences and care among young women and nonbinary/gender-diverse people with psychosis. We used an interpretivist paradigm with a social interactionist methodological orientation.22,23 This paradigm carries underlying relativist assumptions that there is no one “truth” but rather that realities are socially and experientially constructed. 24 The paradigm is well-suited to this qualitative study, which aimed to explore how individuals’ experiences in the health care system are shaped within their wider sociocultural context. Thematic analysis was applied to identify prominent motifs. 25
Setting
The study was conducted in Toronto, Ontario. In Ontario, physician and hospital services are covered under publicly funded provincial health insurance, while medications are covered only under specific circumstances (e.g., age <25, receiving social assistance). Women's College Hospital (WCH), an outpatient academic hospital with specialized SRH programs, partnered with the Centre for Addiction and Mental Health (CAMH), an academic psychiatric hospital, and the Canadian Mental Health Association (CMHA)-Toronto, a community mental health organization. CAMH and CMHA-Toronto each house early psychosis intervention (EPI) programs for youth which offer structured outpatient multidisciplinary care including case management and psychiatry.
Participants and Recruitment
Service users (SUs) who were part of the CAMH and CMHA-Toronto EPI programs and who identified as a woman (cisgender or transgender), nonbinary or along a femme-identifying spectrum, or were assigned female at birth, and SRH and mental health clinicians from specified clinical programs at CAMH, CMHA-Toronto, and WCH were eligible (full eligibility in Table 1).
Participant Eligibility.
Note: CAMH = Centre for Addiction and Mental Health; CMHA = Canadian Mental Health Association; EP = early psychosis; WCH = Women’s College Hospital.
*Maximum age was determined by program eligibility—maximum entry age is 29 years at CAMH and 34 years at CMHA, with a 3-year program length at each.
At CAMH and CMHA-Toronto, SUs were invited by their clinicians and via posters. At CAMH, through the Clinical Engagement and Research Recruitment initiative, delegated research coordinators identified potential participants and notified their clinicians, so that the clinician could invite the SU. Clinicians were recruited via study team members’ professional networks using email and presentations at team meetings. To prioritize the inclusion of “information-rich” participants with diverse experiences and perspectives, purposeful maximum variation sampling was used. 26 For SUs, we prioritized diversity across age, gender identity, sexual orientation, race, ethnicity, and cultural background, and for clinicians, we prioritized representation across clinical programs. This was operationalized by reviewing current participants and asking clinicians to invite potential participants from currently underrepresented groups. Recruitment ended when thematic saturation was reached. 27 As a token of appreciation, participants received a gift card (value 20 CAD) upon interview/focus group completion.
Interviews/Focus Groups
Individual interviews (in-person, virtual, and phone) were conducted with SUs to maximize participant comfort given the personal material, while focus groups (in-person) were primarily conducted with clinicians to stimulate discussion 28 (individual clinician interviews were conducted where focus groups were not logistically feasible). Interviews and focus groups were semistructured. Relevant to the current study, guides included (a) open exploration to increase participant ease and provide context, (b) focused exploration of experiences with accessing/providing SRH care, and (c) wrap-up. Guides were updated during the analysis (final guides in Supplemental Appendix A).
The interviews and focus groups were conducted by LCB, JZ, and AR between 29 August 2019 and 22 October 2021. LCB was present at all but 2 interviews/focus groups and consistency with JZ and AR was supported by using a shared guide, conducting interviews/focus groups together prior to separately, and discussion. Memos were written following interviews/focus groups. Interviews/focus groups were audio-recorded, transcribed and de-identified by third-party transcriptionists.
Analysis
Thematic analysis was used to identify common motifs across SUs and clinicians. 25 First, LCB and one of JF or SLG reviewed SU and clinician transcripts in detail, then inserted initial codes and grouped these into initial themes. Initial themes were reviewed by LCB, ZH, AR, JF, SLG, and JZ, who created a thematic map. LCB then conducted axial coding by reviewing data within each initial theme and then recoding those data into the final thematic map. JZ, the methodological lead, oversaw the analysis.
Reflexivity
Aligned with the relativist approach, researchers considered how their own positionality impacted study conduct and interpretation. The lead authors (LCB, SNV, and JZ) are psychiatrists, and the research team comprises multiple clinicians (psychiatrists, nurses, and family physicians); this is reflected in the study's clinical orientation. All interviewers (LCB, AR, and JZ) identify as cisgender women, and participant comfort level may have impacted differently across gender identities.
Ethics
Research ethics board approvals were obtained prior to starting research activities at WCH (No. 2019-0089-E) and CAMH (No. 051/2019). All participants provided informed written consent except for CAMH participants during the COVID-19 pandemic, who provided documented verbal consent. Team members did not interview or access transcripts for SUs whom they had worked with clinically.
Results
The final sample consisted of 19 SUs and 36 clinicians. An additional 17 SUs approached about the study declined or did not respond, and 1 consented but was no longer eligible by the interview date. SU participants (ages 18–31 years) were predominantly cisgender women (cisgender women n = 15, transgender women n = 2, nonbinary/gender-diverse n = 2, and no transgender men), with diversity across sexuality, race, and ethnicity (Table 2). Clinicians worked across clinical programs of interest and were of varied professional backgrounds (Table 3). Demographic information was not collected for clinicians.
Service User Characteristics (n = 19).
Clinician Characteristics (n = 36).
Note. SCEI = Slaight Centre Early Intervention Service; WCH = Women’s College Hospital; CAMH = Centre for Addiction and Mental Health; MOH = Ministry of Health; RLS = reproduction life stages program; BCBC = Bay Centre for Birth Control; SADVCC = sexual assault and domestic violence care centre.
Considered as mental health programs
Considered as SRH programs (although some clinicians may also have mental health-focused jobs within these programs)
One person had two professional pieces of training
Including registered nurses and nurse practitioners
This included peer support and those in patient-facing roles who were not trained clinicians (e.g., medical administration)
Theme 1. Diversity of Settings: SRH Services Are Accessed in a Large Range of Spaces Across the Health Care System
Both SUs and clinicians described multiple forms of SRH care (e.g., contraception and sexual trauma services), accessed via multiple points across the system, including primary care, dedicated sexual health clinics, acute care (e.g., the emergency department [ED]), and inpatient care (e.g., hospitalist services on psychiatric units).
Clinicians identified challenges with the overall system, including long waits for services, and noted that services were not always available at potential points of access: The ED is a point of contact but there aren’t the services in the ED. (SRH clinician).
Clinicians also cited a lack of system integration as a prominent source of frustration: Yeah, a lot of it is piecing it together on your own, making a million phone calls, trying to talk to people on the outside. (SRH clinician).
Conversely, SUs sometimes described positive experiences accessing services, particularly from their own family physician or from dedicated sexual health clinics. Some also expressed that siloed services allowed a degree of anonymity that made it easier to access care. Finally, some SUs also noted challenges accessing certain specialized services (e.g., for dyspareunia).
Theme 2. Barriers in Nonpsychiatric Settings: Psychosis Impacts Ability to Engage With General SRH Services
Psychotic symptoms including paranoia and disorganization made it challenging for some SUs to access general SRH services (i.e., those not specific to psychiatric populations). Psychotic symptoms impacted SUs’ ability to trust providers, arrange appointments, and engage in care. One SU reported “the number one barrier are the symptoms” (SU11, full quote Table 4), and another shared: I decided I needed an STI test, and I was just really nervous about going because I felt like people were following me and I felt like there was this greater significance to getting an STI test. (SU2).
Additional Participant Quotes for Themes 2 and 4.
Note: CAMH = Centre for Addiction and Mental Health; SRH = sexual and reproduction health; SU = service user.
Mental health care was generally the priority; for example, one participant did not identify unmet SRH needs, as their focus was on mental health care (SU14, Table 4). SRH care was often overshadowed by psychosis. Patients faced psychotic illness-related appointment overload, interfering with attending to other aspects of health—as one clinician said: …it's set up to fail these patients because we know they can't attend 5 specialist appointments in 5 different places on 5 different days. (SRH clinician)
When SUs attended appointments in nonpsychiatric settings, some were concerned about diagnostic overshadowing: Because I didn't want them to think that I have such a big diagnosis, and I'm talking about my sexual health, and my sexual health might not be so important to them. (SU10).
Relatedly, some SUs are worried about psychosis-associated stigma, particularly around decisions to have children and parenting. This was echoed by clinicians (see Table 4, Mental health clinician).
Clinicians described specific challenges in providing SRH care to this population, including high levels of clinical complexity, differentiating delusions from reality (e.g., when a physical symptom or experience might represent a delusion), and addressing gaps in patient SRH knowledge. The issue of consent for SRH care was frequently raised by clinicians: … the bar for consent for STI screening is a little bit higher than regular, routine screening. (SRH clinician).
Clinicians believed that sometimes their fellow SRH providers did not have adequate experience, training, skill, and comfort caring for this population and that systems were not optimally structured for this population: Especially in a system that is not really there to listen to it either, right. They’re very likely to get dismissed. (SRH clinician).
Theme 3. Invisibility in Psychiatric Settings: Within Mental Health Services, SRH is Rarely Addressed
SUs and clinicians described an overall lack of attention to SRH within EPI programs. Clinicians reported a lack of formal integration of sexual health within psychosis care and said that even when SRH was integrated, the timing was usually ill-aligned with patients’ current priorities (e.g., during inpatient care). Both SUs and clinicians reported that providers rarely raised SRH issues within clinical encounters: We don't discuss it unless the client brings it up, I find. (Mental health clinician)
Clinicians identified that this gap was partially due to a lack of clinician training and comfort. Without proactive clinician-led discussions, SRH was not discussed, and the topic was stigmatized: By not talking about it, it makes it more taboo than it is. (Mental health clinician).
Some SUs described difficulty bringing up conversations about SRH, and many used the word “taboo” when describing the barriers. As one SU said: I think I’m a shy person when it comes to speaking about things and I perceive there to be some taboo when it comes to talking about my sexuality. (SU2).
Additionally, acute psychotic symptoms made it more challenging to talk about SRH: It makes it so that it's harder to talk about yourself with, like, even the mental health professionals that you're with. (SU9)
When SUs did have conversations with their providers, there were both positives and negatives, but solutions were lacking: Um, like I feel that with my case manager, that she was willing to listen a bit, she was able to listen and give me some feedback. But again, they couldn't provide any solutions. (SU8).
Theme 4. Variability of Informal SRH-Related Conversations and Supports: Informal Supports Are Often Important, But Individual Experiences Vary
Personal support networks varied. Some SUs described close personal support and identified partners, sisters, and friends as key for obtaining nonjudgmental SRH-related information, advice, and support. While parents were sometimes cited as supports overall, they were typically not key supports for SRH: I think some things just boil down to you don't want your parents to know everything, especially when it comes to your sexual health. (SU14).
A common barrier to seeking informal support from personal support networks was discomfort with respect to talking about sexuality in general, as one SU said: It's such a taboo thing to talk about…In my culture and religion. (SU19).
As well, for some, acute psychosis impacted the ability to receive support around SRH from personal support. For example, one participant described receiving menstruation support from their sister, but experiencing confusion about their sister's identity (SU19; Table 4).
Many SUs had gaps in sexual health information, and while some turned to their physician for advice, many sought information through informal channels such as the Internet and media.
Theme 5: Intersectional Social and Cultural Factors Influence all Aspects of SRH Care
Across all aspects of sexual and reproductive health care, intersectional considerations were important (quotes in Figure 1). Gender was raised in multiple contexts. Some women-identifying SUs were more comfortable with women health care providers. Clinicians (and to a lesser extent SUs) raised that EPI programs have a disproportionately high number of male clients, which can create barriers to discussing SRH within peer support programs, particularly related to gender-based violence experiences. Transgender and nonbinary participants described exclusionary care (e.g., being dead-named and misgendered) and were faced with additional considerations when accessing services. Sexual identity was less frequently identified as a barrier to service access.
Some of the intersectional considerations raised by service user participants.
Culture, religion, and ethnicity were raised by multiple SUs and clinicians when considering barriers to SRH information and services, for example having not learned about SRH if they attended religious schools. SUs also discussed racism as a consideration when accessing care, impacting provider preference: I sometimes find I feel more comfortable talking to people of different ethnicities. (SU9, full quote Figure 1)
Finally, both SUs and providers frequently identified financial barriers to SRH care, particularly contraception. Many SU participants had accessed free barrier contraceptives through university or sexual health clinics or had private insurance (e.g., through their parents), but this was not universal. Finances also impacted access to services not covered under provincial health insurance (e.g., sex therapy).
Discussion
In this qualitative study, women and nonbinary people with early psychosis, and mental health and SRH clinicians, described variable access to SRH care for this population. Multiple barriers were identified, including siloed care, psychosis-related barriers to accessing traditional SRH services, a lack of inclusion of SRH within EPI care, variable personal support networks, as well as intersecting social barriers including affordability and discrimination.
This is the first study, to our knowledge, to describe experiences of SRH service access among women (cisgender and transgender) and nonbinary people with early psychosis. Several of our findings reflect prior psychosis research (not early psychosis-specific), including that individuals with psychosis experience shame related to sexual content and lack opportunities to discuss sexual manifestations of psychosis, and often lack personal supports with whom to discuss issues related to sexuality.29,30 Also similar to our study, in prior nonearly psychosis-specific studies, mental health clinicians’ barriers to discussing SRH with individuals with psychosis included prioritization of mental health, lack of training, discomfort and perceiving sexual health as taboo, and programmatic barriers.31,32 Our findings also reflect prior Canadian literature not specific to psychosis, including variable access to primary care and SRH services, barriers to contraception (e.g., cost and physician bias), and disparities in contraception access for youth. 33 While some of our findings may be context-specific in Ontario, it is likely that many are applicable across jurisdictions. To our knowledge, little prior research has explored the perspectives of SRH clinicians on caring for patients with psychosis, and our exploration of their perspectives is novel.
The themes identified highlight both variation and unity in individuals’ experiences and the multifaceted ways in which individuals with psychosis may be at risk of inadequate SRH care, including related to psychotic symptoms, dual stigma (sexuality- and psychosis-based), inadequate clinician training, programmatic gaps, and systemic barriers throughout the health care system. In general, SUs and clinicians described similar themes, however, positive experiences described by some SUs (e.g., positive experiences of primary care and sexual health clinics) were less often reflected by clinicians. Our data does not elucidate why clinicians recalled predominantly challenging clinical experiences, and it is possible that this could have been influenced by how questions were asked. SUs and clinicians were particularly aligned with respect to how little SRH is integrated within EPI care, either formally (e.g., within psychosis care pathways) or informally (e.g., ad hoc within clinical encounters). Clinicians did note that SRH care was sometimes integrated during inpatient psychosis treatment, however, this was when patients were acutely unwell and therefore engagement was a challenge and potential opportunities for addressing sexual health longitudinally within outpatient EPI care were missed.
Our results underscore the importance of flexible, patient-centred services that destigmatize both psychosis and SRH. Reflecting the multifaceted challenges, solutions will need to be similarly multifaceted and consider improvements to the care of early psychosis populations within SRH services (e.g., clinician training), improvements of SRH care within EPI programs (e.g., integration within care pathways), and collaboration across spheres. Where SUs reported positive experiences accessing sexual health care, it was typically via their own family doctor or sexual health clinics; facilitating access to these services are 2 key potential areas to improve care. Previous sexual health interventions for individuals with psychosis (not early psychosis-specific) have often been designed as stand-alone interventions (e.g., HIV prevention) and have not been tailored to youth, 19 however, our results suggest that to meet the needs of patients with early psychosis, interventions will also need to consider the broader health care system including youth-focused services (e.g., university health clinics). Services need to attend to the developmental needs of youth during a transitional period and consider how SRH services may differ from other health domains (e.g., participants generally did not see parents as supports in this domain). As well, the ability to engage with different forms of SRH care may fluctuate across the illness course, and multiple opportunities for engagement are important. Patient autonomy is paramount—some SUs preferred to keep their services separate, and service designs need to ensure opportunities for individual choice. Finally, intersectional gender-affirming lenses will be critical within all aspects of service development and implementation.
Study strengths include the diverse sample of SUs with early psychosis and the inclusion of both mental health and SRH clinician perspectives. There were several limitations. SUs were engaged via individual interviews while clinicians were engaged predominantly via focus groups; these modalities may have impacted results (e.g., potential hesitance to discuss specific topics within groups). The study was led by cisgender women and important considerations for transgender and nonbinary/gender-diverse people may have been missed. We were unable to recruit transgender men. Transgender men experience substantial barriers to SRH care, 34 and further research is needed to explore care needs among transgender men with psychosis. Some patients identified no unmet SRH needs; it was unclear whether this was due to their needs being met, or potential knowledge gaps about recommended care (e.g., not being aware of screening guidelines); our study was not designed to answer this question. Finally, aligned with the qualitative nature and purposeful sampling approach, we did not conduct quantitative analyses or focus on obtaining a representative sample; quantitative work in a large representative sample to understand the frequency of concerns would be a beneficial complement to this work.
Conclusions
Young adulthood is a key time for the establishment of SRH, yet young women and nonbinary people with early psychosis often face multifaceted barriers to care. Within SRH services, individuals with psychosis may be stigmatized, and SRH is typically not attended to within EPI services. Multifaceted, flexible, robust, equity-informed solutions are needed within SRH services, within EPI care, and across the health care system to reduce barriers and improve long-term SRH in this population.
Supplemental Material
sj-docx-1-cpa-10.1177_07067437231187460 - Supplemental material for Experiences of Sexual and Reproductive Health Care Access for Women and Nonbinary People With Early Psychosis: Towards an Integrated Perspective of Service Users and Clinicians
Supplemental material, sj-docx-1-cpa-10.1177_07067437231187460 for Experiences of Sexual and Reproductive Health Care Access for Women and Nonbinary People With Early Psychosis: Towards an Integrated Perspective of Service Users and Clinicians by Lucy C. Barker, Juveria Zaheer, Zakia Hussain, Julia France, Ananka Rodriguez, Shakked Lubotzky-Gete, Suze Berkhout, Robert Dmytryshyn, Sheila Dunn and Renu Gupta, Fardous Hosseiny, Frank Sirotich, Sophie Soklaridis, Aristotle N. Voineskos, Simone N. Vigod in The Canadian Journal of Psychiatry
Footnotes
Acknowledgements
Thank you to Maria Michalowska, Aysha Butt, Alicia Segovia, Dielle Miranda, and Grace Guillaume for their support with study logistics.
Author Contributions
LCB, SNV, SB, RD, SD, RG, FH, SS, AV, and JZ designed the study. SNV and JZ were responsible for the study conducted at WCH and CAMH, respectively. ZH coordinated recruitment at CAMH. LCB, AR, and JZ conducted interviews. LCB, JF, and SLG analysed the data under supervision from JZ, with input in the thematic map from ZH and AR. All authors contributed to the interpretation of the data. LCB wrote the draft manuscript, and all authors revised it for important intellectual content.
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: SNV reports royalties from UpToDate for authorship of materials related to antidepressants and pregnancy. RG reports royalties from UpToDate for authorship of an article related to Pseudocyesis. RD reports financial support from Searchlight Pharma, Merck, and Bayer. ANV receives funding from the National Institute of Mental Health, Canadian Institutes of Health Research, Canada Foundation for Innovation, CAMH Foundation, and the University of Toronto. All other authors report having nothing to disclose.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Ontario Ministry of Health Alternate Funding Program Physician Innovation Fund (Women's College Hospital). LCB was supported by a doctoral award from the Canadian Institutes of Health Research. SD receives financial support from Women's College Hospital and the Department of Family and Community Medicine, University of Toronto. The funders had no role in study design, data collection, analysis, interpretation, the writing of the report, or the decision to submit the paper for publication.
Supplemental Material
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References
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