“They have just as much right to learn”: Mother’s perceptions of sexual and reproductive health communication with daughters with a physical disability and preferences for an intervention

Having a pediatric-onset physical disability such as spina bifida or cerebral palsy can impact all aspects of a female’s sexual and reproductive health (SRH), from managing periods to sexual intimacy and pregnancy. However, due to pervasive stigma, these females report receiving inadequate disability-specific SRH information, contributing to poor outcomes and missed opportunities to support their goals.1,2 To address this gap, we are working with youth to co-develop an online intervention tailored to females with pediatric-onset physical disabilities from the onset of puberty to early adulthood. AbilityForLife.org promotes their SRH self-efficacy through video-based disability-specific informational content and skill development activities. Mothers are both potential facilitators and barriers to implementing this SRH intervention. While some youth report mothers are a primary source of SRH information, others report they are informational gatekeepers.1-3 We hypothesize that incorporating the evidence-based practice of youth-mother SRH communication, informed by the parent-based theory of planned behavior, will maximize the intervention’s acceptability and effectiveness.4 In youth-mother SRH communication, mothers reinforce information and facilitate open discussions on relevant SRH topics. It is effective in impacting youth SRH intention and behaviors.3,4 In this context, we sought to explore the feasibility of utilizing youth-mother SRH communication as an intervention component and to identify mother’s preferences for the intervention. We conducted an exploratory mixed-methods study of mothers of a daughter with a pediatric-onset physical disability ages 7-26. The research team included 6 female members with relevant clinical, research, or lived experience. After institutional IRB approval, we first conducted a qualitative study. Utilizing convenience sampling through recruitment at three academic centers, 38 mothers expressed interest, 26 completed screening, and 21 participated in virtual one-on-one interviews. The semi-structured interview guide was developed by the research team with input from two mothers. Two research team members together analyzed all transcripts using constructivist grounded theory procedures. At 21 interviews, no new information emerged, signifying thematic saturation. These data informed the development of an online survey to further investigate the themes, which was modified after feedback from an advocacy group and advertised on their social media account for recruitment. A total of 21 mothers participated in the qualitative study and 33 in the survey (Table S1). Through data integration, five themes emerged regarding mother’s perceptions of youth-mother SRH communication, including (i) perceived importance, (ii) facilitators, (iii) barriers, (iv) topics discussed, and (v) preferences for the SRH intervention. Mothers believed in the importance of their daughters learning about her SRH. All qualitative participants described it as especially important. Of 33 survey participants, 14 (42%) believed it was “more important” for their daughters compared to someone without a disability; 17 (52%), “just as important”; and 2 (6%), “less important”. Most personally took responsibility for teaching their daughters about her SRH, noting the failure of schools and health care providers to offer disability-specific information. Mothers felt “knowledge is power” that would equip their daughters to make informed decisions (Participant 1) and pursue goals such as “[to] have [pleasurable] sexual relationships and get married [or] not get married” (Participant 2). Some mothers believed if their daughters were “more exposed to [sex ed]” they would be “safer in the world” (Participant 21), namely at lower risk of abuse. Mothers identified several facilitators to SRH communication. Starting school sex ed, noting behaviors such as “playing with her breasts” (Participant 8), and having older siblings in the home all prompted discussions. Because schools stopped sex ed during the COVID pandemic, some mothers formally taught their daughters using books. Communication was made easier for some due to their daughters’ “medical needs and…understanding”, which normalized speaking openly and being “very technical” about intimate bodily functions including SRH (Participant 4). Such medical knowledge also generated interest in learning “insight to her body” (Participant 3). Nonetheless, mothers noted barriers to SRH communication. Most predominantly, mothers reported a lack of disability-specific knowledge and resources for learning. Of survey respondents, 9 (27%) found it “hard” to find disability-specific SRH information; 16 (48%), “not easy or hard”; 8 (24%), “easy.” Mothers had unanswered “questions about…[their daughter’s] sex life” (Participant 16). Specifically, mothers wondered “what sex will be like” for daughters with fecal or urinary incontinence (Participant 21), their daughter’s potential for pleasure if she did not “have a lot of sensation down there” (Participant 7), how daughters may “maneuver... into different types of positions” (Participant 12), and the safety of sex given their daughter’s diagnoses, such as if it “can damage her back” (Participant 16). Mothers of daughters with a cognitive disability lacked direction for when to introduce topics and “the right way to say things” to improve understanding (Participant 9). Most mothers reported having SRH communication around topics such as puberty and healthy relationships. Fewer had discussed sex and pregnancy. This was attributed to their daughter’s age or cognitive abilities such as being “behind developmentally” (Participant 8). Some mothers admitted they felt uncomfortable discussing more intimate topics despite believing it was important for their daughters. Nonetheless, several mothers did teach their daughters about sex and pregnancy “to make sure she... had correct information” (Participant 17). Mothers shared preferences for the intervention (Table S2), which they wanted tailored to their daughter’s developmental stage and disability type. Some preferred recommendations for when to introduce topics, while others wanted more control due to their daughter’s cognitive disability or development, noting “some kids might need [topics] before or some kids… later” (Participant 10). Others had concerns about if and how certain topics were taught, noting they would not use an intervention that promoted values that “religiously we don’t agree with” (Participant 12). Some wanted topics such as gender identity, sexual orientation, and masturbation to be included to ensure no student would “feel alone” (Participant 14). Others stated such topics should be taught but were “strictly a parent’s realm” to teach and “absolutely should be left out” of the intervention (Participant 11). Of survey respondents, 20 (61%) preferred the content include “basic facts (no values) followed by questions or talking points to prompt parents to share their family’s values” (Table S3). Limitations to this study include the potential bias of mothers who participated, who be more supportive of SRH education than those who did not. Other studies suggest that parents of youth with a physical disability may view their children as asexual or limit their SRH education.2 These preferences are specific to mothers and not fathers, who did not participate, or female youth, whose perspective we previously investigated.1 In summary, mothers in this study believed it was important for their daughters with a physical disability develop the self-efficacy to manage their SRH and pursue their goals. Mothers engaged in youth-mother SRH communication. However, gaps existed due to mothers’ lack of disability-specific knowledge and uncertainty of how and when to discuss intimate topics, especially if their daughter had developmental delay. Together, this suggests mothers will facilitate intervention implementation. It supports employing the parent-based theory of planned behavior framework and the feasibility of utilizing youth-mother SRH communication as an intervention component (Figure S1). Indeed, SRH communication may increase intervention acceptability, given mothers’ preference to share their values, and effectiveness, especially for youth with a cognitive disability. This has informed ongoing development of AbilityForLife.org, which will next undergo beta testing for acceptability and subsequently pilot testing for preliminary effectiveness. C.S.: Conceptualization-Equal, Data curation-Equal, Formal analysis-Equal, Funding acquisition-Equal, Investigation-Equal, Methodology-Equal, Resources-Equal, Software-Equal, Validation-Equal, Visualization-Equal, Writing – original draft-Equal, Writing – review & editing-Equal. J.K.: Conceptualization-Equal, Data curation-Equal, Formal analysis-Equal, Investigation-Equal, Methodology-Equal, Project administration-Equal, Software-Equal, Writing – review & editing-Equal. R.H.: Conceptualization-Supporting, Methodology-Supporting, Validation-Equal, Visualization-Equal, Writing – review & editing-Equal. M.R.: Conceptualization-Supporting, Funding acquisition-Equal, Methodology-Supporting, Supervision-Supporting, Validation-Equal, Writing – review & editing-Equal. D.W.: Conceptualization-Equal, Methodology-Equal, Supervision-Equal, Visualization-Equal, Writing – review & editing-Equal. C.K.: Conceptualization-Equal, Methodology-Equal, Supervision-Equal, Validation-Equal, Visualization-Equal, Writing – review & editing-Equal. This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development under Grant 1K23HD10598701A1 (Courtney Streur) and a Women’s Health Innovation Award from the Department of Obstetrics and Gynecology at the University of Michigan (Courtney Streur and Monica Rosen). The authors report there are no competing interests to declare.