Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: I am a young adult with disabilities and my partner and I would like to have children one day. Where can I find information, resources, and research so that I can learn about taking care of my reproductive health? This edition of Answered Questions includes items that discuss research on pregnancy and people with disabilities; the menstrual cycle after a spinal cord injury; barriers to effective family planning services; advances and challenges to the access of reproductive and sexual health services by Peruvian women with disabilities; and reproductive and sexual health for women with hearing disabilities during the COVID-19 pandemic; among others. More about Answered Questions.
NIDILRR-Funded Projects:
The National Center for Disability and Pregnancy Research (NCDPR) (in English) is a cross-disability initiative to address gaps in knowledge about pregnancy and disability, enhance the experience of pregnancy in women with disabilities, and promote optimal pregnancy-related outcomes for pregnant people with disabilities. The NCDPR conducts research that contributes to the understanding of pregnancy experiences, perinatal risks, complications, and outcomes in people with disabilities. The research findings from NCDPR may be used by policymakers and medical practitioners to plan, implement, and deliver services for a diverse and growing population of people with disabilities who desire to become pregnant.
The Thresholds Health Literacy and Wellness Promotion Center (TWC) (in English) addresses the health and wellness of individuals in recovery of psychiatric disabilities with co-occurring disabilities and physical conditions, focusing on health literacy and promoting wellness to enhance recovery and function within the community. TWC provides simple evidence-based tools and resources (in English) to help people with psychiatric disabilities to maintain their health and wellness. Topics range from cervical health, men’s health, mammography and breast health, to self-care routines, among other topics.
From the NARIC Collection:
The article, Menstrual changes after spinal cord injury (SCI) (in English), discusses a study that examined menstrual changes in female-presenting people with SCI. The study found that 77.5% of the participants had amenorrhea, or missing menstrual cycles, and that the average duration of return of menstruation was 2.65 months. The study also found that most of the participants resumed their menstrual cycle; however, the menstruation duration and flow were reduced significantly. The authors noted that there is a need to address concerns and reassure female-presenting people regarding the resumption of menstruation after SCI. This article is available from the NARIC Collection under Accession Number J90487 through our document delivery service (in English). This article is only available in English.
The article, Perceptions of barriers to effective family planning services among women with disabilities (in English), discusses a study that found that there were multiple barriers experienced by women with disabilities in accessing effective family planning services needed to prevent unintended pregnancy. These barriers included physical or system barriers, financial limitations, and nonresponsive healthcare providers. The women in this study also identified difficulties in finding appropriate family planning methods, both related and unrelated to disability. The findings of this study underscore the need for targeted interventions, improved provider training, and policy changes to optimize reproductive health care, improve access to family planning services, and prevent unintended pregnancy among women of childbearing age with diverse disabilities. This article is available from the NARIC Collection under Accession Number J86949 through our document delivery service (in English). This article is only available in English.
Contraception:
The article, Long-term reversible contraception: An effective strategy for reducing unintended pregnancies, discusses a literature review by the Mexican Federation of Colleges of Obstetrics and Gynecology (FEMECOG, acronym in Spanish) to evaluate the use of long-term reversible contraception as an effective and accessible tool to reduce the incidence of unintended pregnancy and its consequences for people with and without disabilities. The review found that, although Mexico has a variety of reversible contraception, most women with and without disabilities are still using less effective options.
Information and Healthcare Access:
The article, Sexual and reproductive health in the times of COVID-19: Accessibility for women who are Deaf or hard of hearing, discusses a study that explored how women from Chile who are deaf or hard of hearing accessed sexual and reproductive health information and care during the first wave of the COVID-19 pandemic. The study found that the main source of information was videos made by Deaf people on the Internet. The study also found that 75% of participants reported that they had not received accessible information about sexual and reproductive health and 70% of women who required midwife care could not book an appointment. Researchers noted that the COVID-19 pandemic generated a crisis in the Chilean healthcare system that demands a new strategy to ensure access to healthcare. Researchers suggested that decision-makers and sexual and reproductive health services improve their strategies to allow women with disabilities, particularly Deaf women, gain access.
Disability Rights:
The article, Advances and challenges in the access of women with disabilities to sexual and reproductive health services in Perú, evaluates the advances and challenges of Perú related to its obligation to respect, protect, and realize the right to sexual and reproductive health in women with disabilities. The authors propose measures to fulfill these obligations using a human rights-based approach. Despite the advances that have occurred so far in Perú, legislation and discriminatory practices continue to persist, including restriction on legal capacity, sexual violence, and forced sterilizations and abortions, among others. Barriers also still exist that prevent access to reproductive and sexual health services. The authors suggest inclusive sexual and reproductive health legislation and policy are necessary, including the participation of women with disabilities in the design and implementation of policy, the training of health care providers, and raising awareness within the Peruvian society.
The article, A debate between the personal and public spheres: The interdiction as pretext, discusses a study that calls into question the concept of prohibition as a purely legal element and constitutes this concept as a reproductive procedure of social representations and practices that directly intervene in the exercise of autonomy of people with disabilities in Colombia, bit in public and in private. The results of the study showcase the assumptions made that underly this practice and the effects perceived by people with disabilities as they pursue reproductive health care. The results of this study also expose the use of capacity as a means by the Colombian legislation to prevent people with intellectual disabilities to use their own decision-making processes in sexual and reproductive health.
Resources:
- In the archived webinar, Perinatal Health of Women with Intellectual and Developmental Disabilities (in English) from the National Center for Disability and Pregnancy Research (in English), where panelists shared their pregnancy and parenting experiences and discussed the needs and concerns of pregnant people with intellectual and developmental disabilities (IDD). The panelists also discussed policies and programs to enhance the reproductive health and wellbeing of people with IDD.
- The Temple University Rehabilitation Research and Training Center on Community Living and Participation of Individuals with Psychiatric Disabilities (TU Collaborative) (in English) advances the development of interventions that maximize community living and participation of people with psychiatric disabilities through research and knowledge translation activities in partnership with consumers and other key stakeholders. Their monograph, Addressing sexuality and intimacy interests of persons with mental health conditions: Recommendations for program administrators (in English), reviews the research literature that addresses intimacy and sexuality among people with mental health conditions. The monograph suggests training programs for direct service personnel that increase both their comfort level and their clinical skills in talking about sexuality and intimacy.
- The Model Systems Knowledge Translation Center (MSKTC) (in English) enhances the use of research- and evidence-based information to inform decision making by spinal cord injury (SCI), traumatic brain injury (TBI), and burn injury stakeholders and to improve the lives of and services for people with these injuries.
- For people with burn injuries, MSKTC created a video series on sexuality and intimacy after burn injury (in English) and factsheets on sexuality and intimacy for Spanish speakers with burn injuries.
- MSKTC created a series of factsheets on sexuality and sexual functioning after SCI (in English) and factsheets, infocomics, and slideshows on pregnancy after SCI (in English). For Spanish speakers with SCI, MSKTC created factsheets on pregnancy and SCI and sexuality after SCI.
- Finally, MSKTC has a hot topic module on sexuality after a TBI (in English) and factsheets in Spanish on sexuality after TBI.
- The Northwest Spinal Cord Injury Model System Center (NWSCIMS) (in English) conducts research to improve the health, function, and independence of people with spinal cord injuries (SCI) and collects long-term health and outcome information for the National SCI Statistical Center to improve understanding of SCI health care needs and best health practices. This center also provides information about SCI to people with SCI, their families, health professionals, and other stakeholders. As part of their work, NWSCIMS conducts SCI Forums (in English), a discussion series on topics of interest to persons with SCI, their friends, family members, and caregivers. These forums include Conversations from the Bedroom: Sex after Spinal Cord Injury (in English), Sexability (in English), and Women and SCI (in English).
- Grupo Fusa, an organization in Argentina, provides information and training for children, teens, and adults with disabilities on various topics related to reproductive health. Topics include contraception, sexually transmitted infections, and abortion, among others. Grupo Fusa also provides the latest reproductive health news on their website and on their podcast.
Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked.
