What should we be studying? Research priorities according to women and gender-diverse individuals with sexual interest/arousal disorder and their partners

Abstract

Background

Sexual interest/arousal disorder (SIAD) is one of the most common sexual problems for women. In clinical research, there are often misalignments between the research priorities of patients and researchers, which can negatively impact care, and gender-diverse individuals are often excluded from research. Inclusion of patient perspectives when establishing research priorities may help to reduce these gaps; however, the research priorities of couples coping with SIAD remain unclear.

Aim

Identify the research priorities of women and gender-diverse individuals with SIAD and their partners.

Methods

In an online survey, couples coping with SIAD provided consent and responded to an open-ended question asking them to list the top 3 things they think are important for researchers to focus on related to couples coping with low sexual desire. A team-based content analysis was conducted to identify themes and their frequency of endorsement.

Outcomes

An author-developed open-ended question.

Results

Analysis of 1279 responses (n = 667 from women and gender-diverse individuals with SIAD, n = 612 from partners) resulted in our identification of 6 main themes: general causes, general treatment and coping, biophysiological, relationship, psychological, and environmental/contextual. Additionally, we identified 4 sub-themes within each of the latter 4 main themes: general, cause, treatment, and impact. For women and gender-diverse individuals with SIAD, their partners, and specifically gender-diverse participants, the 3 most endorsed themes were psychological general factors (24.3%, 21.2%, 24.3%; eg, stress and the link between SIAD and anxiety), relationship general factors (15.7%, 13.2%, 18.6%; eg, relationship length and communication on sexual desire), and biophysiological general factors (12.3%, 12.4%, 14.3%; eg, research on medications and hormones).

Clinical Implications

Clinical researchers should consider the research priorities of couples coping with SIAD to ensure their work aligns with the needs of the affected population.

Strengths and Limitations

This study is the first to identify the research priorities of both women and gender-diverse individuals with SIAD and their partners. Most participants identified as heterosexual, North American, and of middle to high socioeconomic status; results may not generalize. Responses were sometimes brief and/or vague; interpretation of these responses was therefore limited and may have required more contextual information.

Conclusion

Findings suggest that women and gender-diverse individuals with SIAD, their partners, and gender-diverse participants have similar research priorities that are consistent with a biopsychosocial approach to research. Heterogeneity of responses across themes supports a multidisciplinary, patient-oriented approach to SIAD research.

Introduction

Low sexual desire and/or arousal, which is distressing and persistent—sexual interest/arousal disorder (SIAD)¹, is the most common sexual problem among women, and one of the most frequent reasons for women² and couples to seek sex therapy. ^1–3 Low sexual desire and/or arousal can significantly impact a person’s well-being across a variety of domains. Women with low sexual desire report adverse psychological (eg, depression, poor self-confidence), relationship (eg, lower relationship satisfaction), and sexual (eg, lower sexual satisfaction) effects associated with this difficulty.^4–6 In couples, partners of affected women also report lower sexual satisfaction and higher sexual distress compared to partners of women without SIAD; however, partner experiences have been primarily excluded from SIAD research.^6,7 Likewise, there is a dearth of literature investigating the experiences of gender-diverse populations with SIAD, limiting our understanding of SIAD primarily to the experiences of cisgender women. Although researchers are dedicated to producing high-quality work that benefits patients, including those affected by SIAD, their own priorities and those of patients are not always harmonious.^8,9 To optimize the benefits of research for patients, health research organizations have developed patient-oriented research frameworks to provide guidance to researchers on how to effectively engage patients and ensure their voices are integrated in research.^10–12 Although investigators have begun to include patients as partners in sex research, no studies to our knowledge have directly consulted individuals with SIAD and their partners about the research topics that are important to them.^13–15 Thus, the goal of this study was to identify the research priorities of a sample of couples coping with SIAD. Findings may provide investigators with a preliminary foundation for engaging in patient-oriented SIAD research by showcasing the priorities of the affected population.

Sexual interest/arousal disorder

Low sexual desire and/or arousal is a common experience for women.^1,2 Indeed, population-based studies suggest that 8% to 23% of women report experiencing distressing levels of low and persistent sexual desire and/or arousal.^2,16 Similar findings have been reported among transgender women.^17,18 The Diagnostic and Statistical Manual of Mental Disorders, 5^th Edition, Text Revision (DSM-5-TR) defines SIAD as an absence or decrease in sexual interest and/or arousal for at least 6 months, which is distressing to the individual, and is not attributable to an alternative source (eg, other mental disorders, severe relationship distress, substance use, or medical condition).¹⁹ The development and maintenance of SIAD is complex and multi-faceted, consisting of biological, psychological, social, and interpersonal factors and has been linked to a variety of individual and interpersonal challenges.⁷ Women affected by SIAD report more symptoms of anxiety and depression and lower sexual and relationship satisfaction compared with healthy controls, and also report decreased quality of life.^4,6,20 SIAD can also impact the partners of affected individuals, who have reported lower sexual and relationship satisfaction, poorer sexual function, and more sexual distress compared to partners of women without sexual dysfunctions, highlighting the dyadic nature of SIAD.⁶ Treatments for SIAD have focused on pharmacological interventions, which have mixed and limited evidence of efficacy, and psychological interventions, whose efficacy appears to be more promising.^21–24 Overall, SIAD is a complex, multifactorial sexual disorder in its etiology, impact, and treatment. Yet, there remain significant deficiencies in the understanding and access to services for SIAD. Only 1 in 5 women with sexual dysfunctions report discussing their problems with a healthcare provider, while nearly 60% of women with sexual dysfunctions report barriers to accessing treatment.^25,26 Notably, there is a lack of research available on SIAD in gender-diverse samples. Obtaining a better understanding of what aspects of SIAD affected couples, including gender-diverse couples, consider to be important for researchers to investigate may inform and direct patient-oriented research that will better meet their needs.

Patient-oriented research

Although most health researchers intend to conduct research that will benefit patients, quantitative and qualitative studies suggest a significant misalignment between the research priorities of individuals with lived experience and researchers.^8,9,27 A study by Crowe et al.⁸ compared 14 patient- and clinician-identified treatment priorities for a variety of health conditions with active studies evaluating treatments for the same conditions within the same time period. Their findings suggested that despite patients and clinicians prioritizing a need for non-drug treatments, researchers tended to prioritize drug trials.⁸ Pharmaceutical interventions have also been emphasized in the treatment of SIAD.^21,28 Health research organizations frequently allocate large sums of funding toward pharmaceutical research, which may incentivize researchers to prioritize drug trials.^29,30 In contrast, disorders which primarily affect women are historically underfunded, and psychological interventions for SIAD are comparatively understudied, which may contribute to further misalignments in SIAD research.³¹ Studies which neglect patient priorities may contribute findings that are of less or little benefit to patients and delay access to more impactful treatments.^32,33 These limitations are particularly concerning, considering the high costs associated with conducting clinical trials and extensive time commitment required for health research and to the individuals seeking treatment.^34,35 Indeed, there is an economic burden amassed by individuals with SIAD, whose medical expenses are 28% higher in the year prior to diagnosis and 20% higher in the year post-diagnosis.³⁶ Misalignments in research priorities may also have implications for theoretical conceptualizations of SIAD, knowledge translation, and the causal associations formed by individuals with SIAD, which can be detrimental to an affected individual’s health and well-being.³⁷ Chalmers et al.³⁸ argue that one of the primary methods in which research funds and resources are “wasted” is when researchers ignore the needs of those who consume the research (ie, patients and clinicians).

Previous research suggests that including patient perspectives while establishing research priorities may help to reduce the misalignment between the priorities of patients and researchers.^38,39 This recommendation has been well received by the academic community as researchers are increasingly integrating principles of patient-oriented research into their studies.^40,41 Inclusion of patient perspectives in research has improved the quality and relevance of health-related research at each stage, including the identification of relevant research questions, increased participation rates, improved quality of measurements, and development of more effective knowledge dissemination.^42,43 Of particular importance, research that engages patient partners is likely to contribute findings that are of greater relevance and benefit for patients and clinicians.⁴⁴

Collaborating early with patient partners is a core factor of patient-oriented frameworks such that research projects should be a collaborative process between researchers and individuals with lived experience from their inception.¹⁰ Patients should be consulted on the topics and problems that are relevant to their experiences (ie, their research priorities) and to help in identifying existing research gaps.¹⁰ Researchers in sexual medicine are beginning to consult with patients and the public about their research priorities. For example, Browne et al.¹⁴ developed a list of the top 10 research priorities for sexually transmitted infections by seeking input from patients, clinicians, and stakeholders of a sexual health clinic. Other studies have included individuals with sexual dysfunctions in their research as patient partner collaborators^13,45,46. However, no studies to our knowledge have directly asked couples coping with SIAD to identify their research priorities. Given the dyadic nature of SIAD, the primary aim of this study was to identify the research priorities of women and gender-diverse individuals with SIAD and their partners, using a qualitative approach. A secondary aim was to compare the frequency of their stated priorities to effectively and accurately direct future research toward the topics deemed most important by those affected by SIAD.

Method

Positionality statement

In the interest of transparency and reflexivity, we recognize that our social identities and lived experiences influenced, to some extent, each stage of the research process. All authors have been or are currently being trained in Canadian Clinical Psychology programs at the doctoral level, where their research and clinical approaches to sexual dysfunction are informed by a biopsychosocial framework. One author was identified as a mixed-race, non-binary, queer individual, 3 as cisgender, heterosexual, White women, and 1 was identified as a cisgender Latina woman.

Participants

The data for this study were drawn from a larger study conducted from November 2020 to May 2022. The larger study comprised 3 longitudinal time-points (baseline, 6-, and 12-months) and a 56-day daily survey component. This study used data collected from the baseline survey only. Women and gender-diverse individuals³ with SIAD (n = 288) and their partners (n = 274) were recruited from Canada (n = 428) and the United States (n = 20) through print and online advertisements (eg, Instagram, Facebook). Specific efforts were made to diversify recruitment sources from underrepresented groups, for example, by contacting sexual and gender/sex diverse and Black, Indigenous, and people of color-identified community groups. To participate, couples were required to be 18 years of age or older, fluent in English or French, and in a committed relationship for at least 1 year with a minimum of 4 in-person contacts per week in the last month to ensure opportunities for in-person contact. Participants were eligible regardless of their current gender identity (eg, transgender, non-binary, women); however, 1 couple member was required to have been assigned female at birth and met DSM-5-TR criteria for SIAD.¹⁹ Specifically, participants (with SIAD) were eligible if they reported at least 3 of 6 symptoms indicative of an absence or decrease in sexual interest and/or arousal and satisfied all other criteria.¹⁹ Participants were excluded if they were pregnant, breastfeeding, 1 year postpartum, had no prior sexual experience, or were being actively treated for SIAD. The complete flow of participants into the larger study can be found on the Open Science Framework (OSF; https://osf.io/sdrjm/?view_only=85330520771045e1ad37eea8f244e607). In some couples, only 1 member completed the baseline survey; however, their data were still included in the final sample for this study. A total of 57 participants with SIAD and 57 partners did not respond to the question relevant for this study and were excluded. Therefore, the final sample size for this study was 231 with SIAD and 217 partners. Descriptive statistics for participant demographics are found in Table 1.

Procedures

Interested participants first completed a brief screening phone call with a member of our research team to assess initial eligibility. Screening calls were conducted with both couple members; however, if both partners were unavailable, screening was completed with the individual with SIAD, and assent was obtained from their partner via email. Then, to confirm the diagnosis of SIAD, a semi-structured 30- to 45-min clinical interview was scheduled with the couple member experiencing low sexual desire and/or arousal via phone or Zoom video conferencing with a member of the research team trained in assessing SIAD. Prior to the clinical interview, the couple member with low sexual desire and/or arousal completed a consent form via Qualtrics for both the clinical assessment and the study. Eligible couples were sent a welcome email that included the key components of the informed consent form. Separate emails were then sent to each couple member via Qualtrics with individualized links to the baseline survey, and partners of individuals with SIAD provided informed consent at the beginning of their survey. Participants were instructed to complete their survey independently from their partner. The survey took approximately 40 to 60 min to complete. Survey links expired after 4 weeks. Each participant was compensated $15 CDN (or USD equivalency), paid by either gift card or e-transfer upon completing the baseline survey. Participants were also provided a list of SIAD-relevant resources at the end of the larger study. The study was approved by the Research Ethics Board at Dalhousie University.

Measures

Demographics

Participants reported their age, gender, sexual orientation, culture, education, relationship status and length, and combined annual income. Participants with SIAD also reported their duration of SIAD.

Important research topics in SIAD

Participants responded to the following open-ended question: “We are interested to know what you think is important for researchers to study when it comes to the experiences of couples coping with low sexual desire. In the space below, please list the top 3 things that you would like to see researchers focus on. Please be as specific as possible in your answer.”

Data analyses

This study applied inductive methodologies, which allowed participants to identify their priorities in their own words, using the question as a starting point.⁴⁷ Participant responses ranged from a single word to 5 sentences and a majority of responses were 1-sentence-long. Analyses were based upon Marks team-based, qualitative analysis approach using NVivo for Mac software (version 1.7.1).^48–50 Marks team-based approach is a form of content analysis that allows researchers to both identify core themes and quantify their prevalence within the data, a method Marks refers to as Numeric Content Analysis, adding greater methodological rigor relative to traditional content analyses.^48,49,51 Initially, participant responses were exported from Qualtrics and uploaded to NVivo. To identify initial themes, 2 coders (J.P.K.S., G.C.S.) independently open-coded each participant response. Open-coding involves reading each participant response and assigning a code that reflects the general meaning of the response.⁴⁸ Coders then met with the study lead (N.O.R.) to identify common themes among the open-codes. At this team meeting, each coder presented their most frequently recorded codes, while the team lead noted each code and frequency counts. After deliberation, we identified 6 main themes (general causes, general treatment and coping, biophysiological, relationship, psychological, and environmental/contextual) and 4 sub-themes (general, cause, treatment, and impact) for each of the latter 4 main themes, resulting in 18 possible codes. A detailed definition of each code was established. Independently from one another, the 2 coders then used these 18 codes to systematically code each participant response. Responses relevant to more than 1 theme were coded under multiple codes.⁴⁹ Upon completion, the 2 coders met to review their systematic codes and resolve discrepancies while tracking agreements and disagreements for interrater reliability (IRR). Agreements were identified when researchers initially disagreed upon the classification of a code, but unanimously agreed to keep, change, or remove the code.⁴⁹ Unresolvable disagreements were identified in instances where an agreement on the classification of a code could not be made, but was added or removed based upon the opinion of one coder.⁴⁹ IRR was calculated by taking the number of agreements and dividing by the sum of agreements and unresolvable disagreements.⁴⁹ IRR between coders was high (99%). Finally, coders performed a Numeric Content Analysis by documenting how frequently each theme was identified within responses.⁴⁹

Results

Analysis of 1279 responses (n = 667 from women and gender-diverse individuals with SIAD, n = 612 from partners) resulted in our identification of 6 main themes: general causes, general treatment and coping, biophysiological, relationship, psychological, and environmental/contextual. We also identified 4 sub-themes within each of the last 4 aforementioned themes: general, cause, treatment, and impact. Detailed descriptions of each theme, definitions, example responses, and the codebook can be found within our supplementary materials and are available on OSF: (https://osf.io/sdrjm/?view_only=85330520771045e1ad37eea8f244e607). Ranked order of the frequency of the themes for both participants with SIAD and their partners can be found in Table 2. Given the scarcity of SIAD research among gender-diverse populations, we also present the frequency of themes among only gender-diverse participants (Table 3). To maintain saliency and digestibility, themes that comprised less than 5% of all responses for women and gender-diverse individuals with SIAD and/or their partners (eg, environmental/contextual impact; 0.0%, 0.7%) are not presented here but are listed in the supplementary materials (theme definitions and examples) and Table 2 (frequency of all themes). Thus, the following sections present, in rank-order, the most salient key themes: general causes, general treatment and coping, 2 biophysiological sub-themes (general and cause), 3 relationship sub-themes (general, treatment, and impact), 2 psychological sub-themes (general and cause), and 1 environmental/contextual sub-theme (general).

Psychological general

Psychological general was the most common theme coded among participants. Psychological general was coded when participants indicated that researchers should focus on a broad psychological factor, without specifying it in relation to cause, treatment, or impacts. For example, one partner (age 26)⁴ wrote: “Relation to mental health issues (stress, depression, anxiety, PTSD).” Within this theme, many participant responses made general references to vague psychological factors such as “stress” (partner age, 41) and “self-esteem” (participant with SIAD, age 60).

Relationship general

The theme of relationship general was coded when participants indicated a broad mention of a relationship factor for researchers to focus on, without specifying it in relation to cause, treatment, or impacts. While many responses reported that researchers should focus on “communication about sexual desire between partners” (participant with SIAD, age 36), another example in this code referenced non-monogamy: “the sexual openness of couples, having a sexual partner other than their spouse” (partner, age 47).

Biophysiological general

The theme of biophysiological general was coded when participants indicated that researchers should focus on a broad mention of a biophysiological factor, that is, without specifying it in relation to cause, treatment, or impacts. This code included instances where it was unclear whether participant responses reflected a cause, treatment, or impact, such as the response of a 45-year-old participant with SIAD: “hormonal changes.” Some participants made general references to health, including a 40-year-old partner who wrote “medical issues.”

General treatment and coping

The theme of general treatment and coping was coded when participants indicated that researchers should focus on unspecific or general solutions and management of low desire. Responses indicated a general need for effective methods for the management of low desire. For instance, a participant with SIAD (age 25) identified “coping mechanisms that work” as an important research topic, while a partner (age 21) wrote “possible treatments or therapies for low desire.”

General causes

The theme of general causes was coded when participant responses reflected an unspecific or general cause for low desire. Responses coded under this theme were consistently vague, for example, a partner (age 35) indicated “cause of low sexual desire” as important for researchers to study. Likewise, a participant with SIAD (age 27) wrote “figuring out the reason(s) for low desire.”

Environmental/contextual general

This theme was coded when participants indicated broad mention of an environmental or contextual factor as something that researchers should focus on, that is, without specifying it in relation to cause, treatment, or impacts. This is illustrated by participants with SIAD who stated: “effects of the pandemic” (age 27) and “work responsibilities and family responsibilities” (age 35).

Relationship treatment

The theme of relationship treatment was coded when participants indicated that researchers should focus on solutions or management of low desire in a relationship context. Responses under this theme included “how to make the other partner understand more” (participant with SIAD, age 34) and “how to communicate better when talking about sex” (partner, age 27).

Psychological cause

The theme of psychological cause was coded when participants reported that researchers should focus on a psychological reason for low desire. Participant responses often reflected a broad interest in the psychological causes for low desire, such as this 51-year-old participant with SIAD: “psychological causes.” Other participants indicated specific psychological factors such as “how stress affects desire” (partner, age 22) and “is it related to past trauma?” (participant with SIAD, age 31).

Relationship impact

The theme of relationship impact was coded when participants indicated that researchers should focus on effects of low desire on their romantic relationship. Participants reported interest in understanding the impact of SIAD on various aspects of relationship well-being such as a participant with SIAD (age 26) who wrote “if/how the lack of desire puts strain on the relationship.” Another example of a response in this theme highlighted interest in research that examines the impacts of sexual rejection on the relationship: “the consequences of repeated refusals on the relationship” (partner, age 31).

Biophysiological cause

The theme of biophysiological cause was coded when participants indicated that researchers should focus on a biophysiological cause for low desire. Participant responses indicated that researchers should focus on the associations between aging and low desire, such as a 39-year-old partner who responded “how desire changes with age.” Some participants, including a 37-year-old with SIAD expressed interest in the biological origins of SIAD: “could it be genetic?”

Research priorities of gender-diverse participants

Additionally, we analyzed only the responses from participants who identified as gender-diverse (ie, any gender identity other than cisgender man or woman). To maintain anonymity, responses from gender-diverse individuals with SIAD and gender-diverse partners were analyzed as one group. Analysis of 140 responses (n = 51) revealed that gender-diverse participants endorsed the same 3 most important (ie, psychological general, relationship general, and biophysiological general) and least important (ie, environmental/contextual treatment, biophysiological impact, and environmental/contextual impact) research priorities as the larger sample.⁵

Discussion

This study aimed to identify the research topics deemed important by couples coping with SIAD. To our knowledge, this was the first study to identify the research priorities of couples coping with sexual dysfunction. Participant responses were classified into 6 main themes: general causes, general treatment and coping, biophysiological, relationship, psychological, and environmental/contextual. Furthermore, 4 sub-themes were identified for each of the aforementioned latter 4 themes and included general, cause, treatment, and impact. The 3 most endorsed themes overall were psychological general factors (24.3%, 21.2%, 24.3%; eg, stress and anxiety), relationship general factors (15.7%, 13.2%, 18.6%; eg, relationship length and communication about sexual desire), and biophysiological general factors (12.3%, 12.4%, 14.3%; eg, research on medications and hormones). In contrast, for individuals with SIAD, their partners, and gender-diverse participants, the 3 least endorsed themes were environmental/contextual treatment (0.9%, 0.2%, 0.0%; eg, public education), biophysiological impact (0.3%, 0.5%, 0.0%; eg, effect of SIAD on health), and environmental/contextual impact (0.0%, 0.7%, 0.0%; eg, effect of SIAD on employment). Taken together, these findings suggest that participants are especially interested in a research that generally taps into the psychological, relationship, and biological factors (broadly speaking), which is consistent with a biopsychosocial approach to this sexual dysfunction.⁵²

A multidisciplinary approach to SIAD research

The most frequently endorsed themes in this study align with biopsychosocial conceptualizations of women’s sexuality, which argue that sexual function should be approached with consideration of the associated biological, psychological, and social factors.⁵² This model has also been reflected in both research and theoretical models that examine the etiology, consequences, and treatment approaches to SIAD.^52–55 For example, a review by Parish and Hahn⁷ explained that the onset of distressing low sexual desire is associated with both biological (eg, hormonal imbalances, neural variations in encoding sexual stimuli) and social factors (eg, relationship status), while other studies have linked a variety of biopsychological factors, such as the roles of cortisol and depressive symptoms in low sexual desire.⁵⁶ In terms of consequences, research by Rosen et al.⁶ found that both people with SIAD and their partners experience more negative consequences compared with those without sexual dysfunction including biological (eg, comorbid sexual dysfunction, pain), psychological (eg, sexual distress, depressive symptoms), and relational (eg, poor sexual communication, lower relationship satisfaction) consequences. Treatments for SIAD have generally focused on biological and psychological interventions, with no empirically supported (ie, randomized controlled trial) couple-based treatments currently available.^21,24

In this study, while participants reported interest in each theme, responses were widely distributed across the 6 main themes. The heterogeneity of responses across themes suggests that couples coping with SIAD have diverse perspectives, likely rooted in their individual experiences that are not uniform. Indeed, there is evidence that the experience and impact of SIAD for couples differs according to age, relationship status, and how partners respond to low sexual interest/arousal.^57–59 That participants endorsed priorities across psychological, relational, and biological factors supports a multidisciplinary approach to SIAD research, such that researchers from across disciplines (eg, psychology, gynecology, physiology) should work collaboratively to address the research priorities of this population within a biopsychosocial framework. Within each of the main themes, responses were spread across the 4 sub-themes, suggesting that couples coping with SIAD believe it is important for researchers within each discipline to address the causes, treatments, and impacts of SIAD from a biopsychosocial approach. Moreover, both participants with SIAD and their partners reported similar themes for both their most and least endorsed research priorities, suggesting that couple members have relatively similar priorities. Likewise, our findings suggest that people who identified as gender-diverse also share these research priorities. Thus, researchers might consider these priorities regardless of whether their sample consists of individuals with SIAD, their partners, couples, and that these extend to gender-diverse individuals and couples with SIAD.

In the current sample, individuals with SIAD and their partners—including gender-diverse participants—endorsed environmental/contextual treatment, biophysiological impact, and environmental/contextual impact as the 3 least important topics for researchers to study. It is possible that treatments focused on changes to one’s environment/context (eg, public education) may be perceived as less amenable to change at an individual level and outside of an individual’s control. As such, participants may prioritize research topics for treatment that they perceive to be more accessible and achievable, such as biological, psychological, and relationship-focused treatments. Responses were only coded as environmental/contextual impact when participants endorsed topics that focused on SIAD directly impacting something in their environment/context. The environmental/contextual impacts of SIAD may result in additional effects (eg, stress of work, which then impacts their experience of SIAD) that are perceived by participants as more important and more distressing than the initial impacts of SIAD on their environment/context. These additional effects may have been captured within a different theme (ie, psychological general). Likewise, responses were coded as biophysiological impact when they reflected topics of low desire impacting one’s biology or physical functioning. Low endorsement of this topic may be related to participants’ lack of familiarity with how low sexual desire and arousal can be associated with physical function, or how aspects of their physical function may be a precursor to their low desire (eg, genito-pelvic pain, dysregulation of the HPA axis).^6,60 If participants are unaware of the biophysiological correlates of SIAD then they may prioritize research on topics that are more salient to their knowledge and experiences, and consistent with sociocultural representations (eg, relationship impacts).⁶ Alternatively, it is possible that any factors that are perceived by participants as a biophysiological impact of SIAD are seen as less distressing relative to the perceived impacts of SIAD on their relationship and psychological well-being and hence of lower priority. It should be noted that these explanations are speculative, and more research is required to identify the rationale behind the most and least frequently endorsed research priorities of this population. Nonetheless, it is important for researchers to be aware of the topics that are reported to be lower priority for couples coping with SIAD so that they may allocate their resources toward the immediate needs of the affected populations.

Limitations and future directions

This study has some notable limitations. First, most participating couples were heterosexual, North American, and of middle to high socioeconomic status (SES). Thus, generalizability of the present findings should be interpreted with caution. The minority stress model suggests that historically marginalized populations (ie, sexual and racial minorities, and low SES) face unique stressors (eg, stigma, prejudice, and discrimination) impacting health outcomes.⁶¹ Moreover, consistent with this model, minority populations are at increased risk of discrimination within health settings, which may limit accessibility to health services.^62–65 As such, it is plausible that the research priorities of those affected by SIAD who are from minority populations may differ from those from majority groups. Future research should examine the research priorities in a more diverse sample of couples coping with SIAD.

Second, participants responded to an open-ended question through an online survey. Although this method allowed for the collection of data from a larger sample, the results of this study are limited by our ability to interpret responses that were sometimes brief and/or vague and may have required more contextual information. Moreover, participants responded to a psychological survey related to SIAD. It is possible that participants in this study were biased toward a greater interest in psychological factors (as reflected by this being the most endorsed theme). As a result, this study may not capture the priorities of individuals with SIAD and their partners who are less motivated to participate in psychological research. Notably, the specific question posed to participants omitted reference to sexual arousal. As such, the current findings may not fully represent the priorities of couples who experience challenges with sexual arousal. Together, these limitations may significantly limit the generalizability of our findings. Alternative methodologies such as qualitative interviews and focus groups, from a multi-disciplinary perspective, may allow participants to expand upon their responses, ensure responses are interpreted within sufficient context, and reveal research priorities that were not captured in this study. Furthermore, this study did not ask participants to specify why they wanted researchers to focus on the topics they endorsed. Such information would contribute to a more comprehensive understanding of the research needs of couples coping with SIAD and better inform researchers conducting patient-oriented research. Finally, although this research took a patient-oriented perspective by consulting individuals with lived experiences about their research priorities, it did not follow all principles of patient-oriented research (eg, full involvement of patients on the research team). Future research may benefit from the inclusion of patient perspectives at each stage of the research process.

Conclusion

This study identified the research priorities of individuals affected by SIAD and their partners. Identifying the research priorities of people with lived experience and their families is a key component of patient-oriented research frameworks.¹⁰ Moreover, the inclusion of patient perspectives when establishing research priorities may help to reduce the misalignment between their priorities and those of researchers and improve the quality and relevance of health research.^38,39,42,43 As the first to our knowledge to identify the research priorities of women and gender-diverse individuals with SIAD and their partners, this study provides investigators with a foundation for engaging in patient-oriented SIAD research by showcasing the priorities of the affected population. Importantly, these findings provide empirical evidence that women and gender-diverse individuals coping with SIAD and their partners think that researchers should prioritize psychological, relationship, and biological factors, which aligns with a biopsychosocial approach and current recommendations from researchers and clinicians.⁵² However, their priorities were heterogenous overall, which may reflect the diversity of experiences of those coping with SIAD; continued consultation and integration of the patient perspective is essential for ensuring that the unique needs of this population are met. Importantly, there is a specific need to identify the research priorities of women and gender-diverse individuals with SIAD and their partners from underrepresented populations, to develop a more comprehensive conceptualization of SIAD. Such research may allow for the development of more inclusive and efficacious interventions for women and gender-diverse individuals with SIAD and their partners. We as researchers should be studying topics that are a priority for couples coping with SIAD. As such, consistent with recommendations from patient-oriented research frameworks, we encourage researchers to consider the research priorities identified in this study to ensure their research aligns with the current needs of the affected population.^10–12

Acknowledgments

We thank Gillian Hyslop, Heather Oliveira, Erin Fitzpatrick, Emma Drudge, Mylene Desrosiers, and members of the Couples and Sexual Health and the Sexual Health research laboratories for their assistance with this project as well as the couples who participated in this research.

Author contributions

J.P.K.S.: Conceptualization, Methodology, Formal Analysis, Writing—Original Draft. N.O.R.: Conceptualization, Investigation, Methodology, Formal Analysis, Funding Acquisition, Writing—Review & Editing. S.B.: Investigation, Methodology, Funding Acquisition, Writing—Review & Editing. G.C.S.: Investigation, Methodology, Formal Analysis, Writing—Review & Editing. J.S.H.: Investigation, Methodology, Writing—Review & Editing.

Funding

This study was funded by an operating grant from the Canadian Institutes of Health Research awarded to N.O.R. and S.B. (CPJT-165945).

Conflicts of interest

None.

Footnotes

References