DEVELOPMENT OF A CONCEPTUAL FRAMEWORK OF SEXUAL WELLBEING FOR WOMEN WITH PHYSICAL DISABILITY

Abstract

Background:

Women with physical disability (WWPD) experience more sexual dysfunction, are typically less sexually active, and engage in fewer intimate relationships than women without physical disability. While patient reported outcome measures (PROMs) can help researchers and providers meet the needs of this population, current measures fail to reflect the relevant experiences of WWPD. The purposes of this study were to 1) understand the experiences of WWPD related to sexual wellness, (2) identify the gaps in the current Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction (PROMIS SexFS), and (3) develop a conceptual framework for the measurement of sexual wellbeing on which a new, supplemental measure will be built.

Methods:

Women with physical disability (n = 59) were recruited from an online health registry through a large, academic medical center, and took part in semi-structured focus groups and interviews exploring experiences with sexuality, intimate relationships, sexual function, and sexual and reproductive healthcare. Interviews were transcribed and coded using an inductive approach to thematic analysis.

Results:

Participants expressed that their sexual wellbeing extends beyond simply physical function and includes aspects of their environment, society, and intrapersonal and interpersonal factors. From themes that emerged from the qualitative data, we developed a conceptual framework of sexual wellbeing, which includes sexual health and sexual self-efficacy. The framework is comprised of five constructs that impact sexual health and sexual self-efficacy: physical factors, intrapersonal factors, environmental factors, relationships and partner opportunity, and stigma.

Conclusion:

The conceptual framework can be used to develop PROM items relevant to the experiences of WWPD, facilitate conversations between providers and patients, and identify areas to target for sexual wellness interventions.

INTRODUCTION

Sexual health is a highly important facet of quality of life for many adults in the general population, and yet it is often under-assessed in clinical settings (Flynn et al., 2016; Syme et al., 2019). Sexual health is defined as the “state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence.” (World Health Organization (WHO), 2002). Nearly six million women and girls in the U.S. live with physical disabilities (U.S. Census Bureau, 2000). Women with physical disability (WWPD) experience more sexual dysfunction, are typically less sexually active, and engage in fewer intimate relationships than women in the general population (Moin et al., 2009; Vansteenwegen et al., 2003). Although a common challenge for many women, sexual health and wellbeing is typically under-assessed and often untreated by healthcare professionals (Tsimtsiou et al., 2006). Moreover, WWPD report lower sexual satisfaction compared to women without disability (Nosek et al., 1996; Rinalta et al., 1997). For these women, sexual dysfunction and sexual satisfaction are complex issues involving impaired mobility, pain, and functional limitations, as well as secondary conditions such as spasticity and bowel/bladder incontinence, and psychosocial issues including depression, low sexual self-esteem, and fewer opportunities to find partners (McCabe and Taleporos, 2003).

Compounding these challenges, WWPD face complex environmental and attitudinal barriers such as societal stigma from potential partners, educators, and healthcare providers, and lack of access to healthcare information regarding sexual function and healthy sexuality. For women who acquire a physical disability in adulthood, there can be a dramatic shift in self-concept (Bogart, 2014) and engagement in sexual relationships after their disability onset. For many, navigating intimate relationships and engaging in sexual behaviors requires re-learning about their bodies, adapting to sexual dysfunction, and exploring changes in sexuality related to disability (Fritz et al., 2015; Vaughn et al., 2015). Despite the frequency of sexual dysfunction and challenges to engaging in a satisfying sex life, these are rarely addressed in clinical care. When it is recognized as a need, there are very few evidence-based approaches or resources to improve outcomes.

Patient-reported outcome measures (PROMs) help researchers and clinicians understand the patient’s perspective (Amtmann et al., 2011), can be effective facilitators of discussion between clinicians and patients (Weinfurt, 2019), support shared decision making (Greenhalgh and Meadows, 1999), and help collect important information. PROMs can also support improving health outcomes by helping researchers understand WWPD’s perspectives and experiences, which is vital to developing relevant and targeted interventions (Mona et al., 1994), and by measuring the effectiveness of an intervention on health outcomes. However, current self-report measures of sexual function fail to include items relevant to WWPD. The Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction scale (PROMIS SexFS) measures multiple domains of sexual health including satisfaction with sex life, vaginal lubrication, orgasm ability, vaginal and anal discomfort, and interest in sexual activity (Weinfurt et al., 2015). However, the SexFS was developed for and normed on the general population. While many of these domains apply to WWPD, the SexFS fails to capture other important disability-specific problems (e.g., genital numbness, spasticity, body positioning), nor have the existing item banks been validated in WWPD. Therefore, valid and reliable brief measurement tools are needed that include disability-relevant aspects of sexual health, and provide interpretable, clinically actionable information.

Although it is important to evaluate physical function with respect to sexual health and wellbeing, current measures such as the PROMIS SexFS are designed to address only clinical needs. As such, relying only on this approach ignores the social and environmental factors that contribute to impairment and health disparities for WWPD (Goering, 2015; Krahn et al., 2021), and omits women’s experiences at the intersection of disability and sexual wellbeing. Sexual health is a complex issue that integrates constructs beyond physical function, including intra- and interpersonal factors, sociocultural and environmental factors, and mental and emotional factors. Therefore, to address the need for a clinically relevant measure of sexual health that reflects the multi-dimensional experiences of WWPD, we have undertaken a project to develop items measuring sexual wellbeing that also capture these dimensions most relevant to the interface of sexual health and physical disabilities to supplement the PROMIS SexFS. In this paper, we describe the results of the qualitative phase of the project and propose a conceptual framework as the foundation for assessing sexual wellness in WWPD.

METHODS

Participants

Participants were recruited from an existing study to develop reproductive health related PROMs for women with physical disabilities (Kalpakjian et al., 2020). Inclusion criteria for the study were: 1) women at least 18 years of age; 2) a self-reported physical disability due to any cause; 3) ability to communicate and read in English; and 4) having been sexually active in the past three months. Physical disability was defined as a loss of physical function or mobility that restricts the individual from one or more important life activities. Severity of an individual’s disability (i.e., mild, moderate and severe) was assessed using responses to three items from the Behavioral Risk Factors Surveillance System (BRFSS) (Centers for Disease Control and Prevention (CDC), 2019; Drum et al., 2008), which asks whether a person is limited in any way because of a mobility impairment and, if so, their need for assistance with daily life activities and/or personal care. Ability to participate and give informed consent was assessed by a trained research staff member through responses to screening questions during a telephone interview. Because of the sensitive and personal topic of the study and to increase accessibility for participants with transportation limitations, women either self-selected participation in an online or in-person focus group, or an individual phone interview with a member of the study team. Individuals received a $25 gift card for participating. The University of Michigan’s Institutional Review Board (IRB) approved all procedures.

Procedures

Initial data were collected in the original study to explore important areas of reproductive health among 81 women with physical disabilities (see Figure 1) (Kalpakjian et al., 2020). Five additional focus groups (n=29) were conducted to explore domains selected for further PROM development which included sexual health and function (round 1). These data were used to guide a final round of six focus groups and nine individual phone interviews that focused exclusively on the intersection of disability and sexual experiences (n = 30) (round 2). These 90-minute focus groups were held in-person and through an online video conference platform. The research and interview team included women with physical disability and women of color.

Figure 1.

Qualitative Process. Flow diagram of recruitment starting with the original study, followed by two rounds of focus groups and interviews exploring sexual health and experiences.

Semi-structured guides were used to facilitate discussion and probe specific topics around sexual experiences, intimate relationships, social issues surrounding sexuality, and communication with partners and healthcare providers. Questions included, “What are barriers to satisfying sex or sexual wellness?” and “What is your experience with talking to your doctor about sexual function and sexual health?” In addition, moderators (MNH and JK) asked for feedback on the domains and items of the existing PROMIS SexFS (Weinfurt et al., 2015), and for participants to identify aspects of sexual health important to living with a disability that were not captured by this measurement tool. The research team felt it was important to end the discussions and interviews with a positive reflection. Therefore, discussions were concluded with an open-ended reflection question to participants about how disability positively impacts their sexuality. One-on-one interviews were conducted by the same two research team members (MNH and JK), while focus groups were moderated by one or two researcher team members (MNH, JK, and CZK).

To develop the conceptual framework, we synthesized the original qualitative data and new data with multiple iterations of member checking to solicit feedback from participants and ensure the framework was reflective of their experiences. Additionally, we sought in-depth feedback from several women with disability who are also healthcare professionals, to ensure the framework was congruent with their professional and personal experiences.

Data Analysis

Descriptive statistics were generated for all demographic data. Audio recordings from eleven focus groups and nine phone interviews were professionally transcribed and uploaded to NVivo 11.0 (QSR International) for analysis. An inductive approach was used to independently code the transcripts by two members of the research team with experience in qualitative analysis. Coding structure was developed concurrently with data collection, which allowed the research team to continually assess new information and monitor for saturation (Brod et al., 2009). Codes were grouped by similarity using constant comparative analysis to produce code groups, or “meta-codes” and open and axial coding was used to identify and categorize excerpts of similar themes into “Subcodes” (Glaser, 1965). Definitions were developed and applied to every meta-code and subcode, and during reconciliation the codebook and code definitions were further refined. Coders then reviewed excerpts and discussed disparities in code applications until consensus was reached.

RESULTS

Participant Characteristics

Descriptive statistics and participant characteristics (n = 59) are presented in Table 1. The majority of participants had severe to moderate disability. The most commonly reported disabling conditions were joint mobility disorders (30.5%), spinal cord injuries (22%), and neuromuscular disorders (15.3%) such as multiple sclerosis and muscular dystrophy, followed by cerebral palsy (13.6%) and chronic pain conditions (12%). Less common conditions included limb loss and brain injuries.

TABLE 1.

Demographic Statistics (N = 59)

	Number	Percent
AGE	M = 34.2 (SD = 8.1)	-
Onset of Disability (n=26)	M = 23.08 (SD = 8.6)	-
Birth	33	55.9%
Acquired	26	44.1%
Race
White	50	87.7%
Black	10	17.5%
American Indian/Alaska Native	1	1.8%
Asian	1	1.8%
More than 1 race	5	8.8%
Ethnicity
Latinx	5	8.5%
Not latinx	45	76.3%
Unknown	9	15.3%
Marital Status
Single	14	35%
Married or partnered	22	55%
Divorced or separated	4	10%
Education
Did not graduate high school	2	3.4%
High school diploma or GED	16	27.6%
Associates degree	7	12.1%
Some college	4	6.9%
Bachelor’s degree	16	27.6%
Graduate degree	13	22.4%
FORHP Defined Rural Area
Yes	7	12.5%
No	49	87.5%
Disability Severity
Mild	13	22%
Moderate	18	30.5%
Severe	28	47.5%

Differing Ns due participants’ selecting “I do not want to answer” and/or ability to select more than one response option.

Abbreviations: FORHP, Federal Office of Rural Healthy Policy

Conceptual Framework

The conceptual framework of sexual wellbeing (See Figure 2) was developed from the themes that emerged in the qualitative data, which were organized into constructs. It began with one central construct of sexual health, however, participants in the focus groups and interviews expressed that although confidence in their ability to engage in sexual activities (sexual self-efficacy) was a part of their sexual wellbeing, it was distinct from sexual health. Therefore, sexual self-efficacy arose as a second central construct. Sexual-self-efficacy was defined by the research team as confidence in one’s ability to make decisions about sex and engage in sexual activities with or without a partner.

Figure 2.

Conceptual Framework of Sexual Wellbeing. Proposed framework of Sexual Wellbeing, comprised of sexual health and sexual self-efficacy, and factors impacting the central constructs.

Reflecting the holistic WHO definition of sexual health, women in the study expressed that their sexual wellness extends beyond simply physical function and includes aspects of their environment and society, as well as intrapersonal and interpersonal factors. They identified five constructs that interact with each other and impact the central constructs of sexual health and sexual self-efficacy (See Figure 2). This framework is intended to be dynamic and has the potential to evolve as our understanding of these constructs expands among diverse groups of WWPD.

After thematically analyzing the interview and focus group data, we identified five main constructs contributing to sexual health. Women described how these constructs interact and are amplified by their experiences with disability. Additionally, they identified intrapersonal factors, relationships and partner opportunity, environmental factors, stigma, and sexual self-efficacy, as aspects of sexual wellness that are not currently measured through the PROMIS SexFS. Women expressed that these five constructs are important for clinicians and researchers to consider when assessing sexual health. Table 2 describes the qualitative coding structure, and Table 3 presents excerpts representing each code.

TABLE 2.

Thematic Coding

Meta-Codes	Subcodes
Affect	anxiety
	depression or sadness
	fear
	frustration
	guilt or shame
	stress
	worry
Agency and Sex Decision Making
Body Image and Desirability	confidence
	my body looks or works differently
	self-conscious
Body Positioning
Casual Sex or Dating
Communication	healthcare provider communication
	parental communication
	partner communication
Dating Experiences	positive
	negative
	partner with a disability
	partner without a disability
Desire for Social Support
Disability Stigma and Social Issues	desexualization
	devaluing
	stranger fascination
	fetishizing
	impact on healthcare
Empowerment
Growth
Identity	disability
	sex or gender identity
Intimacy
Knowledge About Sex and Sexual Health	healthcare provider’s knowledge
	knowledge of self and educating others
	lack of sexual and reproductive health information
	seeking knowledge
	sources of information
	books or printed material
	family and friends
	healthcare provider
	online or media
	peers with disability
	sex education class
Lack Of Desire Or Arousal
Lack of Sexual and Reproductive Health Information
Partner Availability and Opportunity
Partner Satisfaction
Physical Function	autonomic dysreflexia
	contractures and tight muscles
	diminishing mobility, function, or sensation
	fatigue
	hypermobility
	hypersensation
	impact on satisfaction
	incontinence
	limited or impaired mobility
	little or no sensation
	lubrication
	pain or discomfort
	spasticity
Positive Experiences	healthcare provider
	intimate partner
	sex education
Relationship Qualities	abuse
	flexible or understanding partner
	partner not understanding
	sense of humor
	trust
Spontaneity and Preparation	assistance in preparation or positioning
Therapeutic Aids

TABLE 3.

Representative Excerpts from Discussions

THEME	REPRESENTATIVE EXCERPTS
Physical Factors
Physical Function and Conditions	• (Mobility) I’m not able to fully straighten my arms and legs, feet, all the way…. And so I had lots of insecurities growing up because of my disability. Just because of that, I didn’t pursue – I didn’t really think that I was ever going to be into the sexual world. I just didn’t think that that was ever going to be something that I was allowed into. I think just because of lack of representation. • (Incontinence) My disability is congenital and I have incontinence issues… I act confident, I project confidence, but when it comes to a certain level of intimacy where, you know, clothes may have to come off, I kind of – I used to limit how much I did. Like I would engage with a partner where they were completely naked. Me, nah, not really. Because I didn’t want them to know or I didn’t want to like have them discover that I was different from them, that I didn’t have the same amount of body control. And it was always something that I was very, very, very self-conscious about.
Therapeutic Aids	• If I’m supported, I don’t have to focus as much on being careful. So I can enjoy myself more and focus more on my pleasure than on being careful. • One of the things I’ve seen online a lot, just within the last few years, that they are coming out with toys and different like equipment, I guess you could say, for lack of better terms, for people that are disabled for sex. To make it more comfortable and make it more pleasurable and make – you know, which I think is awesome.
Preparation for Sex	• (Caregiver Assistance) I’ve had my caretaker put me in the shower and then I waited in there until he got home from work to surprise him…. and I’ve had them dress me – or just leave me in naked until he comes home and stuff. But, so, yeah, I mean I’ve definitely had them help me, and I’m pretty open. • (Toileting and Hygiene) My disability makes it so I prepare more in advance. Like I usually have to pee before I have sex to make sure that I don’t pee during sex… Those little things. So I go to the bathroom in advance. Probably I’m not doing the same acrobatic positions that others are doing. But I think I’ve got most of them down. Particularly if there’s furniture that I can lean on. That’s the ideal. • (Spontaneity) We have to put so much more forethought into it. It just can’t be drunken bar sex. That – no. No, I could really hurt somebody just by having a muscle spasm… Like if you ever wanted to go meet someone at the bar and then it turns into a hookup, and then you think of, like, “Wait, I’ve got to rip out this page of my medical history.”
Body Positioning	• If I could figure out how to position my body and we could adjust – we can make it so I have a biological response, then that would improve my body image because I might feel better about myself. • It’s a lot of experimenting and just trying things out, and definitely a lack of spontaneity, because it’s a lot of practice and a lot of supportive – like pillow fort making to make sure that my joints are supported, so they’re not going to come out of place. So I definitely understand that feeling of it’s not really just let the mood take it, you know, where it will, because you’re having to go, ‘Okay, this joint is hurting so I need to stuff a pillow under here.’ Or, ‘I can do this position today but not this or this.’
Intrapersonal Factors
Knowledge	• (Knowledge of Own Body) I actually had a body exploration day with my [wife] when we first got together, because I wanted her to really understand like how everything was looking and what felt right where before we really like sort of got down to business. And I wouldn’t have been able to do that, to really stop the conversation and be like, ‘I need you to head to toe really understand how I work,’ if I wouldn’t have always been doing that with myself for like, you know, probably six months before that happened. • So that has been a really big tool. I’m real pro self-love, and that has been something that I feel has made me just a lot more comfortable. Because I know what my body likes and that – when you know that about yourself, I guess it’s your body, it has to learn, but when you know what makes your body feel good, it’s like it’s so much easier I think to communicate that to another person.
Affect	• (Depression or Sadness) …when I’m depressed, I don’t care to have sex. It’s not something I’m wanting to do. • (Anxiety) Because I do tend to feel very anxious, and if I do feel anxious, then it takes away from the experience for me. And it’s very hard for me to get past it. • I was afraid maybe he’d want to find somebody else that – because he used to date an able-bodied girl. And so… I had those feelings, like oh well, you know what it’s like to be able to have sex with an able-bodied girl so I can’t do those things… are you sure that you want to be with somebody who can really only do one position? [It] has taken an emotional toll on me. • (Frustration) I get really frustrated because, you know, I want to experience the same thing that he is able to experience. • (Shame) I was really ashamed of my sexual dysfunction, because I didn’t understand it and no one wanted to talk about it.
Identity	• (Disability) …it was just really hard for me to kind of come to terms with like my body being different… in terms of other people seeing it and like being intimate with me and my body, it definitely still causes anxiety. Especially with men, because I haven’t – well, it’s just scary, you know? So I think I have a lot of anxiety with men still. But with women I feel just way more comfortable in general, and I guess it kind of depends who I’m with. But it’s something that I’m working on. • (Sex and Gender) For me, pansexuality is more about hearts, not parts. Like I am okay with like really any gender expression or, you know, like anyone. To me it’s more about connection.
Body Image	• There’s nobody out there who looks like me. You know, they don’t airbrush people to look like my hips look and the way my body looks. My legs are skinny… so it’s frustrating because like I don’t [look like that]. • I think I definitely have anxiety about … being intimate with someone because I have a disability. And because my body looks differently, and it works differently than the ‘average’ able-bodied person. And so that would give me… anxiety because I would feel like awkward about it, and then I think that in turn affected my overall satisfaction [with sex].
Empowerment and Agency	• (Agency) Women with disabilities experience violence at a significantly higher rate than every other population. So being able to have control of your sex life is your right, but it’s often seen as a luxury for many disabled women, and it shouldn’t be. Women with disabilities should be empowered to have control and to relish in that control of their sex life and really feel like this body is my body and it’s my say and I don’t take pity sex. I don’t have sex with people just because I don’t think anyone else will want me. I don’t date someone I don’t want to date just because I think no one else will date me. Like I don’t lower my standards… and that’s I think what so many disabled women do, is they lower their standards because society has told them they’re not worthy. • (Growth) Now that I’m older I wish I could look back… I wish I could’ve reassured that person like it’ll be okay. But it was a hard time and I think that I was willing to settle, you know, for maybe someone who wasn’t the best person, maybe wasn’t the best partner. Because I felt like that, I was less desirable as a partner myself. • (Empowerment) When I started like going to therapy and learning more about myself, I started to realize I do deserve to be a part of this world. I am a sexual person, I do want to experience these things.
Feelings of Desire	• I used to be very – I would take action, I liked to be on top, I liked to make him feel good, you know, like I find pleasure in pleasing my partner…And so it definitely has affected the way that I feel about my performance, and definitely it makes me feel less sexy, because I’m less able to do things. So it definitely minimizes my desire.
Perception of Partner Satisfaction	• Not being able to like have normal sexual function… there’s a lot of guilt there, there’s a lot of frustration. There’s a lot of – all of the emotions, and a lot of guilt like that I can’t please my husband or have that same intimacy that he wants…. it does impact me more than I’ve realized…. I’m frustrated a lot of times and I’ll say it’s due to something else, but then after we get through it or we process it, we find out it’s – really back to the fact that I’m frustrated that I can’t have the intimacy and the sex that I want, or that my husband wants.
Environmental Factors
Social Support	• I’ve been able to find a disability community online, and we’re able to have these conversations with each other. Like speaking so freely about sex with another person that’s disabled, that’s a big deal…. As far as body image, seeing other disabled bodies has been so helpful for me, and has really helped with my growth. Because when you’re used to seeing a specific image all around you, like that’s what beautiful looks like, that’s what a perfect body looks like, and yours doesn’t look like that, and it never will no matter what you do, that’s a harsh reality. So when you have other people in the community that like can identify with you, that know your struggles, they just get it. It’s the most beautiful feeling because you know you’re not alone. • I think that – you know, because once you’re injured you feel like, ‘Oh, my life is over,’ so much changed so quickly. ‘How am I going to do this?’ That they should know – hear from others who have gone through it already that, you know, it’s going to be okay, you’re going to be able to still do things one way or another and you can still 100% have an active sex life.
Diversity	• I think geography is really important. Because when I was younger, I was in a more rural area and I was the only disabled person in my class, like with a physical disability…. I’m a person of color and everyone was white. Now I live in the city and I blend in with everyone else, there’s just so much more diversity. And so I do feel like because of that, the doctors that I see, they see a lot of variance. I don’t feel so like – a lab rat, you know?
Access to Information	• Because obviously [the physical therapists] have never gone through it either, so they could only touch very lightly on things. And so had there been somebody that I could’ve talked to that had already been through what I was going through, I think it would’ve made a big difference. • This kind of education needs to happen so much younger for disabled women, and because we – the reality is regardless of what disability we have, we’re still aging and we’re still susceptible and capable of developing other things that non-disabled women get every day. And we can’t be dismissed. • I just think compiling resources – what do adapted toys look like? How can you get them? What kind of books are out there – I just think this whole field of sex and disability, it’s something I’m super interested in and I think that just getting more resources and finding our community, like that’s so important for us to be able to grow, I think. • [The book] had the same kind of chapters on different levels of disability and sensation, and sex between partners who are both disabled or one is disabled and the other one wasn’t. How to use sex toys. The best ones to use for particular disabilities, or how to make them more accessible for yourself individually.
Attitudinal Barriers	• (Healthcare Providers) I think there needs to be a push for healthcare professionals especially in rehabilitative settings to feel comfortable with the sexuality of their patients. Because there was more than a couple of times that I was in rehabilitative settings where I was shamed for masturbating. Even if the clinic was closed and locked, I would have medical professionals enter into the room and they wouldn’t let me know they were coming in…. They would be like, ‘Well, what are you doing? Why are you doing that? This is against the rules.’ And I’m like, ‘It’s not against the rules to sexually explore in a locked room when the door’s shut.’ • (Healthcare Providers) The medical community just assumes that we can’t or aren’t interested and chose not to [have sex]. • (Healthcare Providers) …When you go to a general practitioner they don’t ask you about gynecological care and they don’t refer you because they’re not looking at you. They may not be looking at you as wanting children or being a sexual being, or being a woman with different issues. Just because you see a doctor for your disability or for a cold or for an annual physical, doesn’t mean that you shouldn’t see a doctor to get a proper mammogram or pelvic exam…. I’ve lost a few friends with disabilities whose cancers were caught too late because they weren’t really encouraged to go [get diagnostic tests]. Or it was kind of dismissed, a pain that they may have had that they didn’t understand where it was coming from. So I think really with general practitioners just understanding that their female patients with disabilities should be encouraged to be sent to the gynecologist as often as they send non-disabled patients.
Relationships and Partner Opportunity
Communication with Health Care Provider	• I actually don’t think that any of my doctors have ever talked to me about STIs. • So it’s – but sexual function is definitely I feel low on their list, especially for, you know, they just look at you and you’re just like you’ll figure it out. You know, they can just – they just – I don’t know, it’s – I feel like it’s not even a concern to them. I feel like it’s not – I’ve had both male and female doctors and I’ve kind of had the same – I have to teach them about me kind of situation. • I think when you have a disability you have to be a very strong advocate for yourself and you have to get across the point that you know your body and you know that this is different or this is wrong.
Partner Communication	• So I definitely have had conversations, like when I was in a long-term relationship things were a lot different, and we definitely spoke about, you know, like the way that my body moved and things, like ways that I couldn’t move, and stuff like that. And that went well, because it was someone that I really knew. • Well, the first time that like I had like a bowel issue, it happened before I ever really had that conversation with him. So that was very upsetting for me, but together we like talked about it, and I realized that it wasn’t a big deal to him. It wasn’t something that I would be more judgmental to myself than he was. So, I think it was more me just trying to learn to get comfortable with explaining to him how I’m feeling, and also kind of trusting myself, and knowing my own body, and knowing that it’s okay to say I need to stop right now, and I need to go deal with something, and then I’ll come back. And just knowing like, obviously I knew it was okay, but like, but there is a difference between knowing you’re allowed to, and actually doing it in the moment and not feeling guilty about it, or not feeling embarrassed or something.
Opportunity for Relationships	• I maybe stayed in my last relationship longer because I thought, ‘Oh, I have a disability,’ and things aren’t horrible. But maybe it will be harder to find someone that would be into me. • I didn’t really feel like I had anybody to talk to when I was young about sexuality, and when I was a young adult, I think – I just felt like it was just so hard to find a sexual partner. I didn’t feel like other people were interested in me romantically. And so it was probably the hardest time of my life, was maybe my early 20s, when I was in college, and I just felt a lot of rejection.
Partner Qualities	• (Not understanding) He wasn’t patient and understanding, and when we first got married, we had a great sex life. But then as my disease progressed, things needed to be changed and adapted, and he wasn’t all about that… the communication wasn’t good and he almost seemed bothered by it and blamed me for [it], and so emotionally it was very hard to get into a place in my mind, my body where I felt comfortable and worthy of sex. • (Understanding/Patient Partner) I really think that with basically everything related to disability, it’s really important to have an open mind and to know going into it that you’re going to have to try things and that may not work the first time you try it but, you know, just keep trying different options and this might work or that might work. So it’s always important to have a partner who’s willing to experiment and who isn’t going to get upset if you try something and it doesn’t work, you know?
Intimacy	• I’ve come to realize as I’ve gotten older it’s way more about an interpersonal connection. Intimacy to me is way more about like power… there’s such a connection with my mind, my heart and my body, and all of those have to be really kind of aligned for me to be able to fully let go, and have the time of my life in a sexual way. • You have an amazing opportunity to reach a different level of intimacy….it just requires a different level of communication and an emotional intimacy that could easily be ignored or just not have an opportunity to show in traditional, standard able-bodied relationships. And to get that closeness and that compassion and caring and stuff, and just to really be validated… It allows us much more creativity and it can be, in my opinion, a closer relationship because of that.
Stigma
Devaluing	• (By Medical Community) I feel like any time we talk of disability as a problem we’re inherently telling women there’s something wrong with them, and that leads to people questioning their own self-worth. • (By Potential Partners) …especially with men, there was this assumption that I would be desperate and that I would be willing to cross personal space and boundaries off of my needs list to just have someone to give me affection. • (By Family) That was especially something when I was younger that I would struggle with, like oh well, I hope somebody finds me attractive. And if they do, then I’m really going to – and this is something that I would parrot from other people, especially like my family members. They’d be like, “Oh, it’s going to take a really special person to like love you and it’s probably going to happen when you’re older, when you’re more mature.” And I think that kind of narrative that we get told can oftentimes reinforce these acts of desperation. • (By Society) I think he often gets like the, “what a good guy for being with the girl in the wheelchair” type thing. • (By Self) But getting back out into the dating world was terrifying to me, because I had been so conditioned to the point where I’m thinking okay, no one is going to love me, no one is going to want to be with me for just me.
Desexualization	• (By Potential Partners) I just feel that it’s also tied into more so feelings of desexualization. Like we feel like we need to have an ‘always on’ kind of sexualization to ourselves, or at least I did when I was looking for partners… to kind of lead the topic into sex. Because with my disability, I didn’t get a whole lot of sexual interest until I forced the point. And that’s an odd situation to be in. • (By Healthcare Providers) …Especially in the medical field, a lot of doctors just kind of assume because of the strong association with procreation that certain genetic inheritable conditions just shouldn’t even be a part of their life. And so they don’t even address [topics on sex], or they, you know, push birth control so much, and sterilization kind of stuff. Or they just assume that if you’re having difficulty doing all these basic life tasks, you don’t get to [have sex]…. like if you have trouble feeding yourself and showering, and all of these other issues [doctors] feel like oh, [sex] shouldn’t even be a priority. You know, it’s kind of de-humanizing people a little bit.
Fetishization	• I think [fetishizing] really ties in because with my particular condition, which is a connective tissue disorder, there’s increased flexibility and looseness in joints and stuff. And you can see how that’s very easy for guys just going a million miles an hour in the wrong direction with that. • Even though you don’t think that you’re on some of these bucket lists, you kind of find out that sometimes you are.
Stranger Fascination	• And then I had had an experience where I went out with someone and she noticed people were staring, and then I think it made her really uncomfortable. • I feel more like disability prom king and queen when I’m dating someone and we’re out in public, as opposed to when I’m dating someone who doesn’t have a disability. • There’s kind of a fine line because you want people to understand that yes, we still are sexual people and we can still have very satisfying sex lives. But then you also get random people in a store sometimes asking you [if you can have sex], and you’re just like, “What? Why are we talking about this?” Like would you ever come up to somebody else and just ask them that?

Physical Factors

Women discussed how physical factors and sensations such as pain, hypersensation, diminished or no sensation, spasticity and muscular tightness, joint hypermobility, and incontinence impact their ability to engage in sex, and how these physical factors often indirectly affect their sexual wellbeing by diminishing their satisfaction with sex. The presence of these physical factors often meant that women experienced pain during sex, when positioning their bodies or because of tight vaginal muscles, or that their diminished arousal led to vaginal dryness or difficulty reaching orgasm. However, therapeutic aids, such as pillows or wedges, ties, transfer boards, lubricants, and medical devices facilitated sex by helping women position their bodies or by making sex more accessible and comfortable.

These physical factors contribute both directly to women’s perceptions of their sexual health, and indirectly through intrapersonal factors, such as body image, emotions, desire, and perceptions of partner satisfaction. Most women described feeling self-conscious about having a body that looks, moves, or works differently from others or differently than it did in the past. Some also had implanted medical devices (i.e., pumps) or devices attached to their bodies (e.g., catheters, colostomy bags), which caused them to feel self-conscious. A decreased desire for sex was often the result of diminished sensation, chronic pain, impaired biological response (e.g., little or no lubrication or arousal), or medication side effects. Their physical function also impacted how women perceived and felt about their partner’s satisfaction. Many worried that because their disability meant their bodies looked, moved or functioned differently, that their partners may be less satisfied with sex.

Additionally, physical factors indirectly impact sexual health through relationships and partner opportunity. Women described how preparations for sex, such as emptying their bowels or bladder (to prevent incontinence during sex), or transferring from a wheelchair to a bed, made it difficult to have spontaneous or casual sex, which then affected their opportunities for intimate relationships. Some women needed the help of caregivers to facilitate sex, which included pre and post sex hygiene, undressing, or positioning their bodies. The need for preparation, use of aids, as well as difference in function and sensation necessitated greater levels of trust, understanding, and communication with partners in order to engage in sex or be intimate, and to enjoy sex.

Stigma

Stigma included constructs such as desexualization, fetishization, devaluing, and being a source of fascination from strangers. Women described the effects of stigma from healthcare providers, educators, partners, and society. Desexualization in the healthcare setting often resulted in providers not discussing birth control options, not asking about sexual partners or sexual function, or testing for sexually transmitted infections. These actions implied to the women that due to disability, these were unnecessary as they would not be engaging in sexual activity with partners. In the context of sexual education, teachers and healthcare providers also did not offer resources or information around sexual and reproductive health for the same reasons. Additionally, women described experiences with potential partners who hesitated to initiate sexual interactions, who did not know that they would be able to have intimate physical relationships, or who assumed they were asexual.

Most women had experienced devaluing of their sexuality from parents, partners, educators, and themselves. Devaluing was reflected in messages about being “less than others,” or needing to “settle” for a partner because they are viewed or view themselves as not being able to “do better.” Women revealed that their internal narratives about feelings of worthiness were the result of these devaluing messages and low expectations from family members, educators, healthcare providers, and society. Devaluing and desexualization influenced sex decision making. Some women expressed feeling they had to have sex to prove they could, or they chose less desirable or sometimes abusive partners because they felt that was the “best they could do.”

Stranger fascination referred to strangers approaching them and asking inappropriate questions about sexuality and disability, or strangers treating them differently (e.g., giving them unsolicited extra attention, favors, or inappropriate praise, or treating them as objects of inspiration). Many women shared stories of being approached in public spaces, such as grocery stores and restaurants, and being asked about their sexual function by people they did not know. Others described instances of being stared at or treated like the “prom king and queen” when publicly dating someone else with a visible disability. This included strangers approaching them and infantilizing them, or effusively describing couples as “cute.”

Intrapersonal Factors

Intrapersonal factors, such as affect, body image, identity, agency, empowerment, growth, and knowledge about sex and sexual health directly contribute to feelings of sexual health. Many of these constructs are also influenced by physical factors, environmental factors, relationships and partner opportunity, and stigma.

Negative affect (e.g., anxiety, depression or sadness, frustration, stress, worry, and guilt or shame) diminished women’s interest in and satisfaction with sex, and impaired arousal responses. Women disclosed that their disability contributed to feelings of worry, anxiety, and guilt about their partner’s satisfaction with sex, or frustration that they may not have equal experiences during sex.

Stigma, affect and body image related to having a disability impacted women’s decisions about when to have sex and who to have sex with. Some women described staying in relationships or agreeing to sex because they felt that they may not have other opportunities as a result of their disability. But many also spoke about the importance of personal agency around sex decision-making, although for some, it felt like a “luxury” to have control over their sexual lives.

While many discussions in the focus groups and interviews centered on dysfunction and negative issues regarding healthy sexuality, women also spoke at length about experiences of empowerment and growth. Women, regardless of acquired or congenital disability, experienced growth over time related to sexual wellbeing. The most common areas of growth were their perception of themselves as sexual beings, the types of relationships they engaged in, their comfort or confidence with intimate relationships, and in their communication with partners and healthcare providers. Sometimes growth occurred because of relationship experiences or a deeper knowledge of their own bodies. In other instances, growth was attributed to representation and finding communities (online and in-person) of other women with disability embracing their sexuality.

Relationships and Partner Opportunity

Relationships and partner opportunity refers to both intimate partner relationships and relationships with healthcare providers. This construct included communication, opportunities for relationships, qualities of partners, and intimacy. Participants discussed partner communication in depth, describing both the benefits of good communication, as well as barriers to communicating with intimate partners about sex and needs. Often, communication intersected with partner qualities; greater barriers to communicating occurred when partners were impatient, inflexible, or not understanding. Positive experiences with communication often occurred with partners who were flexible, understanding, had a sense of humor, and were trustworthy. Partner availability and opportunity was often influenced by stigma and played a role in women’s agency and sex decision making. These experiences led to women choosing to have sex with partners that were not desirable because they felt they had few options.

While women described many barriers and challenges with intimate relationships due to physical factors, intrapersonal factors, and stigma, they also discussed how having a disability contributed to greater intimacy and communication with sexual partners. Intimacy was characterized by statements about enhancing emotional connection or closeness with partners and included statements about finding ways to create connection beyond sex. Women who experienced deeper intimacy with partners also had a deeper knowledge of their bodies, felt a sense of agency around sex, and had good communication with their partners. They described developing deeper communication with their partners before and during sex to convey their physical needs and desires, which also translated into better communication outside of sexual activities.

Environmental Factors

Environmental factors impact sexual wellbeing directly and indirectly, and include elements within the built and attitudinal environments, such as access to sexual and reproductive health information and care. Women described access to information and care around their sexual health being strongly impacted by disability stigma. Several indicated that their concerns were dismissed by healthcare providers or attributed to their disability, which led to late diagnoses of reproductive health conditions, and a lack of knowledge about their own sexual wellness.

Women emphasized the lack of relevant sexual and reproductive health information for women with physical disabilities, starting in grade school, where they were either not given sexual education or received education that was not disability relevant; to a paucity of sexual health information in rehabilitation settings; to healthcare providers that did not offer information or were unable to provide relevant information. Women sought out sexual and reproductive health information primarily from healthcare providers, books, and online through blogs about sexuality and disability, although relevant information was scarce and they largely learned about their bodies and adaptations for sex through experience over time. In many cases, women felt they had no choice but to take on the responsibility of educating their healthcare providers and partners about their bodies and sexuality.

Women described the healthcare built environment as inaccessible. Many shared experiences of not being able to transfer to non-adjustable exam tables for a pelvic exam, or not being able to access diagnostic equipment for mammograms. Additionally, narrow and high tables made them feel unsafe as it is difficult or impossible to support their bodies if they have limited mobility.

Those that described positive experiences with built and attitudinal environments felt it positively influenced intrapersonal factors (knowledge, empowerment, agency) because they were able to access sexual and reproductive health information and care, while feeling supported by understanding and unbiased providers in an environment that was accessible.

Sexual Self-Efficacy

Women’s perception of their sexual-health shapes their confidence in their ability to engage in sexual activities. Reciprocally, sexual self-efficacy influences women’s perception of their sexual health. When women had greater sexual self-efficacy, they viewed their sexual health as better; they were more likely to have greater agency around sex decision-making and the ability to communicate their needs. Having a deeper knowledge of their bodies gave women greater confidence during sexual activities. This, in turn, helped them have continued confidence to explore their bodies and aides to facilitate sex and make sex more enjoyable.

DISCUSSION

Data from this study described the experiences of WWPD related to sexual wellness and function, and helped identify gaps in the PROMIS SexFS. With the direction of WWPD, we developed a conceptual framework that can serve as the foundation for the development of future PROMs of sexual wellbeing. To our knowledge, this is the most comprehensive and holistic framework of sexual wellbeing for women with physical disabilities to date and the first to include sexual self-efficacy. While the framework and constructs are not specific to disability, living with disability amplifies experiences and challenges surrounding sexual wellbeing.

Our findings emphasize that sexual wellbeing is a dynamic and multidimensional process and is important to overall health and wellness for WWPD. The experiences shared by women in this study align with an expanded definition of health as subjective wellbeing that changes across the lifespan and is affected by environmental and social factors (Krahn et al., 2021). Women identified the constructs within the proposed framework as important factors to their sexual wellbeing that were not captured by the current PROMIS SexFS and suggested developing complimentary measures that could capture their holistic experience.

Sexual health and sexual self-efficacy are at the center of the framework, with interconnected internal and external factors dynamically influencing these important constructs. Women discussed how their perception of sexual health contributes to sexual-self-efficacy, and how confidence in their ability to engage in sexual acts affects their perception of sexual health. Sexual self-efficacy influences women’s actions regarding intimacy, choosing partners, communicating with healthcare providers and romantic partners, seeking information about sex and reproductive health, and advocating for oneself (Assarzadeh et al., 2019; Zimmer-Gembeck, 2013). When women had greater sexual self-efficacy and higher perceptions of sexual health, they felt more satisfied with the ways they engaged in sexual activities, with the partners they chose, how they adapted sex to meet their needs, and with their sexual function. In addition, they felt greater agency to choose better partners and avoid unhealthy relationships, as well as to communicate with partners and healthcare providers and advocate for themselves. These findings are similar to research in the general population that demonstrates sexual self-efficacy is related to sexual satisfaction, risk-taking, and self-schema (Addoh et al., 2017; Reissing et al., 2005; Zimmer-Gembeck, 2013). While WWPD have the same sexual desires and needs as women without disability, their sexual satisfaction and sexual self-confidence is lower (Moin et al., 2009). Studies have demonstrated that sexual satisfaction and self-efficacy can be improved through health interventions (Ghasemi et al., 2021; Hajinia and Khalatbari, 2017; Hocaloski et al., 2016; Nooripour et al., 2014). This highlights the importance of supporting sexual self-efficacy in clinical care by developing relevant sexual health interventions and sex education across the lifespan, and providing equitable, accessible, patient-centered healthcare (Vaughn et al., 2015).

During the focus groups and interviews, WWPD identified factors that support their sexual wellbeing, as well as barriers to sexual health. In this study, many women described a lack of inclusive sexual and reproductive health information across their lifespans, beginning with education systems that failed to represent their needs in sex education and families who could not provide information on sexual health and intimate relationships, to a healthcare system that often ranges from dismissive to discriminatory towards persons with disability. As WWPD navigate these education and healthcare systems, it fortifies the stigma that they are not worthy of intimate relationships and are not sexual beings, which greatly influences how women perceive themselves and engage in sexual activity. While some women with acquired disabilities who had been in rehabilitation centers received some sexual education materials, this is not widely available to women who aged into disability, had congenital disability, or had not been to a rehabilitation facility (Vaughn et al., 2015). For women who experience disability as adolescents, school-based sexual health education can include disability perspectives and relevant information in their curriculums to promote agency in relationships as well as self-advocacy in healthcare settings (Bahner, 2018; Porat et al., 2012). Adults outside of rehabilitation or educational settings could benefit from socially supportive, accessible sexual wellness programming aimed at developing sexual-self-efficacy.

While many barriers to sexual wellbeing that women faced were external and societal, some were a result of a progression of their conditions or increase in functional limitations as they aged. They reported needing more preparation for sex or greater physical support through therapeutic aids, caregivers or partners. Additionally, they relied on more and better communication with partners to convey their needs to improve arousal responses or position their bodies in ways that decreased pain or facilitated sexual activity. Women with a greater sense of sexual self-efficacy reported having fulfilling and satisfying sex lives despite functional or mobility limitations. Access to resources and therapeutic aids, and knowledge of their needs and comfort communicating those needs helped mitigate these barriers for women in this study.

Furthermore, women who had access to unbiased, patient-centered healthcare and inclusive sexual health resources reported feeling supported and understood by their partners and healthcare providers, and more confident in their ability to engage in sexual activity. Having access to disability relevant information (from healthcare providers, rehabilitation centers, and educational settings), socially supportive communities, and seeing themselves well-represented in media and online all contributed to improved communication with intimate partners and healthcare providers, feelings of sexual confidence or self-efficacy, and better sexual wellbeing. Women described how these positive and inclusive experiences helped them gain better knowledge of their bodies, communicate their needs to partners and caregivers, and learn how to use aids that could support and facilitate sexual activity. Moreover, women who felt empowered by these supportive, accessible, and inclusive systems also expressed that they had satisfying sex lives, whether having sexual activity alone, having casual sexual encounters with multiple partners, or developing a deeper sense of intimacy with one partner.

In response to the question of identifying how their sexual wellness was benefitted by their disability, participants expressed appreciation for the opportunity to reflect on the positive experiences they had as a WWPD, and shared stories and feelings. These centered around three topics: (1) the greater communication required by disability created a deeper sense of intimacy with their partners; (2) through experiences and exploration they had a richer knowledge of themselves and their bodies; and (3) many felt empowered by their growth and the women they have become. A myopic focus on sexual dysfunction prevents recognition of positive aspects of having a disability. The women in this study continued to reinforce a message described in other studies: WWPD desire and deserve to have satisfying sexual lives and be treated as sexual beings (Eglseder and Webb, 2017; Porat et al., 2012; Vaughn et al., 2015). Therefore, it is important for clinicians and researchers provide patient-centered care that considers the sexual wellbeing of WWPD as multidimensional, and to disseminate relevant interventions aimed at improving factors that contribute to sexual health and sexual self-efficacy.

Limitations

Focus groups can be limited by dominant personalities who may be overrepresented in the data (Patrick et al., 2011). To mitigate member dominance, the same two moderators guided all focus group discussions and proactively employed strategies to engage less conversational participants and solicited feedback from every participant. Additionally, participants had the option of a 1:1 cognitive interview, due to the personal nature of the questions.

Another limitation of the study is the lack of diversity of participants. Participants predominantly identified as White, cisgender, heterosexual women living in more densely populated areas in the U.S. Future studies recruiting women with disability should seek diversity in sexual orientation, gender identity, race and ethnicity, and rurality. This would give deeper insight into the compounding effects of social determinants on the sexual health experience of WWPD (Horner-Johnson et al., 2014; Vaughn et al., 2015).

IMPLICATIONS FOR PRACTICE

This study provides a conceptual framework for understanding the dimensions of sexual wellness for women with physical disabilities. Women identified factors that support their sexual health and sex self-efficacy: (1) access to disability-relevant sexual education and resources across the lifespan; (2) healthcare providers who understand disability and provide unbiased, patient-centered sexual and reproductive healthcare; (3) accessible clinics and equipment; (4) access to therapeutic aides and information on how to use them to adapt sexual activities to meet their needs; (5) social support around sex and relationships, and disability representation in media and social platforms; (6) eliminating disability stigma and messages that WWPD are not sexual beings or worthy of intimate relationships.

In future work, this conceptual framework will guide the development of PROMs of sexual health and sex self-efficacy that can be used in clinical settings to support women and health care providers in having meaningful dialog and shared decision making to enhance sexual wellness. These new measures will also facilitate research to develop and implement relevant and accessible sexual and reproductive health interventions and improve sexual wellness for WWPD. This framework can also be used to identify relevant sexual health topics to provide education or resources to WWPD. It can also help providers and educators identify environments that are inaccessible or perpetuate bias and make them welcoming to WWPD. With a deeper understanding of the barriers WWPD face related to sexual wellbeing, how stigma affects WWPD’s health, and what facilitates sexual health and sex-self-efficacy, clinicians, researchers, and health educators can move past these barriers to improve care, provide greater access to information and resources, and develop relevant and inclusive health promotion programming to support sexual health and wellness.

CONCLUSION

This study identifies internal and external factors that contribute to sexual health and sex self-efficacy for WWPD and highlights the inequities and stigma women face in accessing sexual and reproductive healthcare and information, and engaging in sexual relationships. The conceptual framework resulting from this study is intended to be dynamic and has the potential to evolve as our understanding of these constructs expands among diverse groups of WWPD. The framework serves as the foundation for sexual wellbeing PROMs currently in development, and may also be used to help clinicians improve the care they give to their patients with disabilities and aid researchers to identify areas to target for sexual wellness intervention.