Professional Educational Opportunities

From the Editor of Sexuality and Disability : Global Perspectives on Sexuality and Disability

Correction to: Nursing Students’ Experiences on Assessing the Sexuality of Patients: Mixed Method Study The original version of the article was published with incorrect tables. The correct version of the tables is presented in this erratum.

Contraceptive Practices and Reproductive Health Considerations for Adolescent and Adult Women with Intellectual and Developmental Disabilities: A Review of the Literature Abstract Whereas progress has been made on increasing access to comprehensive healthcare for individuals with intellectual and developmental disabilities (I/DD), disparities continue in health outcomes, including those related to the reproductive health of adolescent and adult women with I/DD. This review summarizes reproductive care considerations for adolescent and adult women with I/DD and current practices regarding the delivery of contraceptive services to these women. Forty-seven (47) articles based on research conducted in the US between 1999 and 2019 were selected for inclusion in the review. Primary themes discussed include (1) common reproductive health concerns for adolescent and adult women with I/DD, other than pregnancy prevention; (2) contraceptive methods and disability-related concerns; (3) informed consent and reproductive decision-making; and (4) provider knowledge and education. The management of menses and hormonal dysregulation were identified as concerns that providers encounter among patients with I/DD and their families. Disability-related concerns with regard to use of contraception in general and considerations regarding certain methods in particular include challenges with prescription adherence, physical effects of hormonal therapies, drug interactions for individuals with additional health conditions, and legal and ethical concerns involved with decision-making and consent. The results of this review also suggest that focused efforts in partnership with health care providers may be needed to address barriers that adolescent and adult women with I/DD face when trying to obtain quality reproductive health services and contraceptive guidance.

Sexual Dysfunction in Patients with Multiple Sclerosis from Argentina: What are the Differences Between Women and Men? Abstract Sexual dysfunction (SD) has been reported in people with multiple sclerosis (pwMS). However, SD is commonly underdiagnosed in clinical practice. We aimed to assess SD frequency (primary, secondary and tertiary) in pwMS in both genders and to investigate possible associated risk factors. A cross-sectional study (pwMS = 202 and healthy volunteers (HV) = 200, matched for sex and age) based on self-administered questionnaires such as Multiple Sclerosis Intimacy and Sexuality Questionnaire (MSISQ-19), The Hospital Anxiety and Depression Scale, Fatigue Severity Scale and self-reported disability was performed in pwMS and controls. In addition, the Female Sexual Function Index (FSFI) and the International Index of Erectile Function (IIEF5-ED) were obtained in women and men, respectively. Factors associated with SD were analyzed in a multivariate model. The frequency of primary, secondary and tertiary SD in pwMS was 81%, 87.3% and 75.2%, respectively. Both erectile dysfunction (ED) and female SD were significantly higher in pwMS than in HV (89% vs. 26% and 54% vs. 21%, respectively). Only 45 (22.2%) pwMS had addressed sexual problems with their neurologist and 33 (16.3%) pwMS received counselling about their sexual problems. Higher MSISQ-19 total scores were significantly correlated with fatigue, anxiety, depression, self-reported disability and lower FSFI and IIEF5-ED scores. Furthermore, female SD was independently associated with primary SD, but no associated factors were found in male pwMS (multivariate analysis). In conclusion, SD is extremely common in pwMS from Argentina. The previously mentioned physical and neuropsychological factors have a negative impact on sexual function.

Capacity to Consent: Policies and Practices that Limit Sexual Consent for People with Intellectual/Developmental Disabilities Abstract Consent determination is a common practice that has been championed as a logical approach (Lyden in Sex Disabil 25(1):3–20, 2007) to the sexual activity of individuals with intellectual and/or developmental disabilities. These practices are paternalistic and ineffectual, and need to be replaced with viable alternatives, such as sex-education provision. In this piece, I deconstruct the logic of this practice utilizing the case of Ashley X, contemporary research findings, an analysis provided by Perlin and Lynch (Sexuality, disability, and the law: beyond the last frontier?, Palgrave Macmillan, London, 2016) and Deborah Stone’s policy analysis framework (Stone in Policy paradox: the art of political decision making, 3rd edn, Norton, New York, 2012). I argue that prevention of sexual activity is not synonymous with protection from sexual harm—and, in fact, may paradoxically cause harm to this population. I dispute the notion that people without intellectual disabilities are more equipped to make sex-related decisions for this population. Additionally, the notion of consent in this population is treated as flexible, and primarily bends to facilitate the needs of people without disabilities. I conclude with several recommendations, including a request for protective civil rights legislation to defend the sexual and relationship rights of people with intellectual and developmental disabilities.

Sexuality in People With Ostomies: A Literature Review Abstract Ostomies have shown to compromise different components of an individual’s quality of life, particularly their sexuality. Although some elements that can affect sexuality have been described in this population like body image or lifestyle changes, being a necessity to understand these difficulties, as well as to know the strategies the same patients have used to improve their sexual life. A review of the literature was performed using the following databases: Medline, Central, Embase, Scopus, Lilacs and Psycinfo. The include studies required a qualitative or mixed method approach with the purpose of investigating the sexual issues of people with ostomies along with their strategies to improve their sexual life. A total of 1039 articles were reviewed by title and abstract. Among these, 17 references were selected for full-text review. Based on these, an ostomy seems to compromise three individual aspects: physical, emotional and social. The physical aspect is associated with the mechanical difficulties caused by the ostomy, such as the act of coitus. The emotional aspect is related to self-esteem alterations due to changes in an individual’s physical appearance. Lastly, the social aspect is related to the perception of their partner, their family and other peers. The sexuality of people with ostomies should be approached before and after the surgery. Partners of the individuals should be involved throughout the explanation of the process in order to help the patient recover faster and, therefore, avoid hampering their sexual lives.

Negation of the Right of Women with Disabilities in Palestine to Marry: Cultural Considerations for Disability Abstract The right to marriage, family, and parenthood is embodied in Article 23 of the Convention on the Rights of Person’s with disabilities. The purpose of this study was to explore the access to marriage for women with physical disabilities in Palestine. Seventeen women who acquired their disability before the age of 16 were interviewed. Fourteen participants were not married. Although these unwed participants believed they had the physical capacity to marry, and some had suitors, their families prohibited marriage. Participants reported marriage censure was buttressed by strong community attitudes. Three participants had married, with the support of the their birth family, but with the strong disapproval of the husband’s family. The study explores the relationship between Palestinian cultural practices in regard to marriage and disability and argues that in Palestinian culture a prohibition of marriage results in the negation of the rights of women with disabilities. The study illuminates and raises questions of power and inequity and deepens our understanding of the intersection of gender, gender roles and disability in the Palestinian context, examines the tension between social justice for individuals and respecting a cultural context of collectivism and binding familial relations, and the cultural assumptions made about physical norms and capability.

Nursing Students’ Experiences on Assessing the Sexuality of Patients: Mixed Method Study Abstract This study aims to examine nursing students’ experiences on assessing the sexuality of patients. This research is a mixed method study consisting of two stages as qualitative and quantitative. The first stage was carried out with 104 students using a socio-demographical data form and the sexual attitude and belief scale (SABS) to collect data. In this stage, most students stated that they could collected data about patients’ sexuality in clinical practice; however, they could not make a nursing diagnosis and give care regarding sexuality. It was determined that this was due to the age, gender and education level of the patient/nurse. A significant difference was found between SABS total scores of students who collected data about sexual health and those who did not (p < 0.05). The second stage was carried out with 72 students. Focus group interviews were performed to examine the students’ experiences on assessing the sexuality of their patients. Two main themes were specified: barriers and recommendations. Most nursing students perceived many characteristics, particularly socio-demographical characteristics, as barriers for talking about sexual matters. Nursing care in this field is postponed since they do not talk about sexual problems. Nursing students’ problems in assessing the patients’ sexuality must be realized in the first year of education. Trainings that aim at eliminating the lack of knowledge are recommended.

The Sexual Health Needs and Perspectives of College Students with Intellectual and/or Developmental Disabilities and Their Support Staff: A Brief Report Abstract The purpose of this mixed methods pilot study was to examine the sexual health needs, knowledge, and access to resources for students with intellectual and/or developmental disabilities (IDD) and their support staff in an inclusive postsecondary education (IPSE) program. Four college students with IDD and sixteen support staff from an IPSE program in the Southeast United States were recruited in 2018. Semi-structured interviews were conducted with students. Online surveys, which contained open-ended and Likert scale items, were administered to all support staff. Students and staff both reported that students had limited sexual health knowledge, were uncomfortable discussing sexual health, and reported little interest in the topic. Both students and staff provided recommendations for creating inclusive sexual health programs and marketing strategies. Students have limited information about sexual health and are not included in sexual health programming in meaningful ways. Staff lack the training needed to address students’ sexual health questions. This study also makes a significant contribution to the dearth of literature on the sexual health of college students with IDD.