Women with cerebral palsy: A qualitative study about their experiences with sexual and reproductive health education and services

1. Introduction

Cerebral palsy (CP) is the most common motor disability of childhood, with a worldwide average prevalence of 2.1 per 1000 live births that varies with gestational age and birth weight [1]. CP refers to a heterogeneous group of disorders which have in common abnormalities of movement and posture. Secondary features may include intellectual disability, seizure disorders, and sensory and musculoskeletal impairments [2]. Most children with CP live into adulthood and require appropriate preventative and holistic care as they transition to adulthood and across their lifespan. While studies have shown that people with disabilities are perceived as being asexual, not interested in sex, and not sexually active [3, 4, 5, 6], few studies have focused in-depth on women with CP. Because CP is so prevalent and because individuals with CP often have co-occurring disabilities which make their care more complex, it is worth exploring the experiences of this particular population.

Adolescents with physical disabilities such as CP have been reported to be as sexually experienced as their non-disabled peers, but they often report receiving less sexual education and fewer sexual health services [7, 8]. For example, young women with mobility impairments are less likely than women without disabilities to be asked about contraception by physicians, and they are also less likely to receive indicated Papanicolaou tests [9, 10, 11]. In a previous study by our group consisting of a national survey of women with CP, 70% of women were not asked about their desire to become pregnant during a physician visit, yet 20% experienced at least one pregnancy [3]. Overall low rates of education about sexually transmitted infections (STIs), human immunodeficiency virus (HIV), and condoms among women with disabilities potentially place them at greater risk of pregnancy and sexually transmitted infection. In the Netherlands, smaller studies of young adults with CP and without intellectual disability showed that a large proportion of women were dating, but 90% reported that their sexuality was not discussed during medical visits. In this same population, 80% reported CP-specific sexual problems and a desire to have these problems addressed [12, 13, 14].

The purpose of our study was to explore the recalled experiences of women with CP with regard to their access to information, interactions with providers, and healthcare services provided to support their sexual and reproductive health. We used a qualitative approach to more deeply understand the experiences and feelings of these women.

2. Methods

Semi-structured focus groups and individual interviews were conducted in the context of a larger study about the sexual health of women with CP across four academic tertiary care sites with specialized CP programs. One site is a freestanding children’s hospital, and the others are large medical centers that serve adults. Institutional review board approvals were obtained at each participating site before commencing the study. Each participant was informed of confidentiality requirements and provided informed consent before participation.

Focus groups were conducted using semi-structured discussion templates (see example in Table 1). To maximize participation, individualized interviews were also conducted. To provide consistency across study sites, all focus group and interview sessions were facilitated by an experienced female moderator who is also a physical therapist. Due to transportation and mobility limitations, especially in more severe weather conditions, participants had the option of participating in person or by phone or Skype. The moderator reviewed informed consent and audio transcription consent as well as confidentiality principles and discussion guidelines (e.g., only one person speaking at a time, respecting other participants’ perspectives) with each participant or group. She explained the purpose of the discussion as being to advise the research group to create best practices in clinics serving women with CP.

She then led informal discussions based on semi-structured interviews and group discussion templates, which varied in focus by site. The pediatric site focused mainly on reproductive and sexual health education. Groups at the adult sites discussed mammography, pregnancy care, and physical access to gynecology care. All, however, included templates designed to elicit information about experiences in key content domains: recalled sexual education, appointment planning, accessibility of services, exploration of potential barriers to care, experience with providers, and recommendations for improving care. Because the same moderator conducted all focus groups and interviews, we were able to use an iterative approach to explore common themes and expand upon them in subsequent discussions. Questions were not altered, but examples were provided to prompt discussion about points raised in prior focus groups and interviews as a means of theoretical sampling.

Interviews and focus group sessions were audio recorded on a digital device and transcribed verbatim. To retain confidentiality, transcripts were de-identified by the removal of participants’ names. Quotes were associated with participants by alphanumeric codes. De-identified data was stored centrally at the lead institution.

Thirteen individual interviews and a total of six focus groups were conducted across all sites between October 2015 and February 2016; one subject participated in a group interview by Skype. The 33 participants ranged in age from 19 to 72 years old, with a mean age of 38 years and a median of 36 years. Eighty-two percent of the subjects were white, 9% African American/Black, 6% Asian or South Asian, and 3% Hispanic/Latino. Forty-five percent of participants functioned at a GMFCS level I or II, indicating they could walk independently without a hand-held device (see Table 1).

Themes that emerged during qualitative analysis of the combined data included challenges accessing sexual health care, insufficient education received from healthcare providers about sexual health, insufficient education of healthcare providers about CP, disappointing experiences of doctor/patient dynamics, and a recognition of the need for continued self-advocacy within a system that is not prepared to meet their needs. Participants frequently discussed an absence of continuity of care, a lack of CP-specific related services, and deficiencies in accommodations at provider offices as barriers to care. Participants felt disempowered by providers’ lack of CP-specific knowledge in sexual health, especially pregnancy and family planning. Recommendations contributed by participants to improve care in this area included creating checklists for sexual and reproductive health care for healthcare providers and patients to inform each of important topics to address, equipping offices with specialized equipment including height-adjustable exam tables, and improving education for healthcare providers about sexual and reproductive health topics concerning CP.

4. Discussion

This study details many opportunities for improving sexual and reproductive health care and education for women with CP, starting in adolescence. The findings of this study document that barriers to women with CP receiving appropriate and timely information and care still exist, despite evidence that many of these disparities have existed for decades [17, 18]. Results of this study can be used to inform interventions to improve reproductive health care for women with CP.

Barriers to accessing sexual and reproductive health service are broad for women with CP, and some are more easily remedied than others. Participants perceived that despite their efforts to seek out knowledgeable healthcare providers, most providers have had limited exposure to patients with CP, let alone reproductive health care related to CP, and did not know how best to meet their needs. Healthcare providers’ lack of expertise contributed to participants’ sense of urgency for self-advocacy. Importantly, women with CP expressed appreciation when they sensed a willingness from clinicians to learn about their condition so as to better meet their needs.

A common element that surfaces in all of the themes identified in this study is that healthcare providers often seemed to assume women with CP were not sexually active and did not provide them information in the area of sexual health. Our participants recalled that they needed to seek out sexual health education from a variety of sources. The education they received from their healthcare providers was frequently inadequate, and what they received from parents, schools, friends, and the internet often failed to meet their needs as well. This was either because they could not find essential information or because, when found, it was not tailored to the unique needs of women with CP. These findings resonate with previous studies which have identified gaps in patient-centered information provided to adolescents and young adults with CP, including the lack of education with regard to prevention of sexually transmitted diseases or how the diagnosis of CP may impact sexuality and reproduction [12, 19, 20]. Additionally, in studies evaluating topics reviewed at clinical visits by primary care providers, documentation of sexual, menstrual and pregnancy information for adolescents and young persons with a disability compared to matched individuals without disabilities was much less frequent [21]. For example, sexual history was documented in 19.0% of those with a disability versus 73.8% without a disability [22]. Similar findings as to the lack of discussion of sexuality have also been identified for those seeing rehabilitation providers [13]. Young women with CP are more likely to discuss birth control with healthcare providers than parents, and more likely to discuss abstinence with parents than healthcare providers [23]. Even within the population of adults with CP, those with more significant mobility impairments reported significantly lower levels of sexual information compared to those able to walk [24].

Although women with CP experience considerable challenges and changing complex systems is often difficult, participants suggested concrete incremental ways to improve standard sexual and reproductive health care. They created a number of innovative solutions as “work arounds” to address deficiencies in care processes and lack of provider knowledge about CP. They suggested requesting longer appointments earlier in the day at the time of scheduling, depending on anticipated needs for the visit. They suggested offices should ask in advance about the need for assistance with positioning or disrobing so that appropriate staffing can be allocated for assistance rather than depending on family members which then interferes with privacy. Healthcare offices must also plan staffing and protocols to ensure safe transfers to and from exam tables, a need that could be anticipated at the time of visit scheduling. They suggested providers should prescribe medications for reduction of muscle tone to allow for a less painful pelvic exam either at the time of scheduling or after a visit in anticipation of the next.

Strengths of this study include a broad national representation of women with CP across the gross motor function spectrum, including women with significant mobility impairments. Limitations of the study include the bias of recruitment from select urban populations with access to care. There was also a relative under-representation of Hispanic/Latino and African-American participants in the sample compared to the United States (US) population at large; such information is not readily available for US adults with CP, but under-representation could be inferred from a population-based study of children with CP [25, 26]. Because disability and racial/ethnic minority status potentially affect the receipt and experience of healthcare services to such a large degree, patient voices at the intersection of disability and racial/ethnic minority status should be particularly sought out in future studies. In addition, the ages of the participants span a generational shift from a less to more open attitude towards sexual education, though even our youngest participants reported receiving little education in this area. Because the study was conducted with adult women ranging widely in age, recall bias may affect the description of education and services received when they were adolescents and young women. However, emotionally loaded memories are often amplified and rarely forgotten. Finally, women with intellectual disability were not represented in this sample due to the complexities of consent, and their valuable experiences are thus missing from this report.

Healthcare providers need education about the sexual and reproductive healthcare needs of women with CP, both to improve the care they provide individually and to be able to advocate for more CP-friendly healthcare facilities for their patients (e.g., motorized lifts on exam tables). Healthcare trainees would benefit from more teaching about CP-specific reproductive health needs (e.g., what birth control methods are safe for a woman who uses a wheelchair) and coaching to promote emotional intelligence to ask sensitive questions (e.g., ask about sexual abuse), topics which could be introduced into training curricula. Clinics and hospitals can move toward standardization of care by auditing the accessibility of their physical plant, training clinic staff to anticipate known needs of women with CP (e.g., assistance transferring to an exam table), and implementing questions about disability into routine pre-visit screening questions. Providers can be encouraged to use best practices through standardized electronic medical record templates incorporating sexual and reproductive health for patients with CP. The most important education that healthcare providers can convey in all settings is that conversations about sexual health should be part of routine health care for women with CP, as they are for all women.

Women with CP also need access to accurate and CP-specific health information. Study participants identified the value of having a sexual health needs checklist to refer to, which could help them to prepare for their medical appointments and to advocate for their needs. Some participants implied that having such a checklist essentially gave them “permission” to raise these topics with providers. As follow up of the themes and recommendations from this project, each research site team developed educational interventions. One site developed patient sexual health checklists and patient educational videos to prepare for gynecology appointments. Another site developed a guide for preparing for pregnancy. A third site developed a provider education video regarding communication with women with disabilities before and during mammography appointments. The pediatric hospital site developed a conversation guide to help script conversations about sexual health for younger patients with CP, as well as a guide for pediatric healthcare providers less well-versed in conversations about sexual health to help them initiate discussion with patients. All of these materials are available at https://cpresource.org/topic/womens-health. More research is needed to validate these educational materials and to evaluate their impact on care.

5. Conclusions

Women with CP identify that healthcare professionals lack awareness of the sexual and reproductive health needs of women with CP and that healthcare facilities are often deficient in readiness to care for them. Medical professionals require education to address these gaps. Young women with CP need access to information about best practices so that they feel empowered to ask for and receive what they need. Both providers and patients with CP may benefit from scripted tools to ensure comprehensive care. While systems change can be challenging, a number of specific attainable recommendations were made by the participants of this study that could be incorporated into standard care.