Pediatric Neurologists’ Perspectives on Sexual and Reproductive Health Care for Adolescent and Young Adult Women With Epilepsy and Intellectual Disability

Kirkpatrick, Laura; Collins, Amy; Harrison, Elizabeth; Miller, Elizabeth; Patterson, Christina; Sogawa, Yoshimi; Cott, Anne C. Van; Kazmerski, Traci M.

doi:10.1177/08830738211041824

Cited by 6 publications

(8 citation statements)

References 29 publications

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“…Overall, these studies showed that women with disabilities were not provided information, or only received partial information, related to the different options of contraception (Alhusen et al, 2020; Beckmann et al, 1989; Horner-Johnson et al, 2022; McCarthy, 2011; Wiseman & Ferrie, 2020), with limited details on how each method could affect their health. Women with disabilities were prescribed longer-term methods of contraception (Agaronnik et al, 2020; Horner-Johnson et al, 2022; Kirkpatrick et al, 2022; Ledger et al, 2016; McCarthy, 2010, 2011; Shiwakoti et al, 2021) and decisions surrounding contraception were often made by people in their social milieu (i.e., caregivers or professionals; Ledger et al, 2016; McCarthy, 2009a, 2009b; Shiwakoti et al, 2021; Wiseman & Ferrie, 2020).…”

Section: Resultsmentioning

confidence: 99%

Uncovering Reproductive Injustice Toward Women With Disabilities

Pacheco,

Mercerat,

Aunos

et al. 2024

International Perspectives in Psychology

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For centuries, the reproductive agency of women with disabilities have been challenged and often undermined by informal and formal support networks. Evidence illustrates that women with disabilities face disproportionately higher rates of reproductive violence compared to their nondisabled peers (i.e., long-term contraception or forced sterilization). However, little is known about the specific nature, type, and impact of reproductive violence on women with disabilities. This scoping review examined the literature related to the reproductive violence against women with disabilities. We used Arksey and O’Malley’s framework, and based on our inclusion criteria, 28 empirical articles were included. Most studies were published in the disciplines of health (i.e., nursing and medicine) within the North American context and used qualitative research designs. Main findings within the scoping review included themes related to imposed contraception, rationalization of sterilization, barriers to sexual and reproductive health services, and the discourses underpinning reproductive injustice toward women with disabilities. The findings of the study have implications for future disability community-based research, peer-led supports, practice guidelines for professionals, and intersectoral policy provision aiming at supporting the reproductive agency of women with disabilities.

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Section: Resultsmentioning

confidence: 99%

Uncovering Reproductive Injustice Toward Women With Disabilities

Pacheco,

Mercerat,

Aunos

et al. 2024

International Perspectives in Psychology

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“…Our collective of multidisciplinary subspecialty clinicians and health services researchers has described some of the common challenges that subspecialists feel undermine their provision of SRH care 4,14,23,24 . Our qualitative research also indicates that many patients with chronic diseases feel that their SRH needs are not met in the current subspecialty care model 25–28 ; they overwhelmingly desire for their subspecialists to address their SRH as it relates to their diseases, but with a holistic approach that accounts for the greater context of their values, preferences, and life circumstances 29,30 .…”

Section: A New Model Is Needed To Provide High‐quality Sexual and Rep...mentioning

confidence: 88%

“…[13][14][15][16][17][18][19][20][21][22] Our collective of multidisciplinary subspecialty clinicians and health services researchers has described some of the common challenges that subspecialists feel undermine their provision of SRH care. 4,14,23,24 Our qualitative research also indicates that many patients with chronic diseases feel that their SRH needs are not met in the current subspecialty care model [25][26][27][28] ; they overwhelmingly desire for their subspecialists to address their SRH as it relates to their diseases, but with a holistic approach that accounts for the greater context of their values, preferences, and life circumstances. 29,30 Herein, we offer a blueprint, based on a person-centered framework, to generate strategies across the subspecialties that better meet the needs of birthing people and enhance their SRH care and outcomes.…”

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confidence: 91%

A blueprint for a new model of sexual and reproductive health care in subspecialty medicine

Talabi

Callegari

Kazmerski

et al. 2022

Health Services Research

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The United States has the highest rate of maternal mortality of any developed country in the world. 1 This excess mortality burden is related, in part, to the rising prevalence of pregnant people with chronic diseases, such as systemic lupus erythematosus, pulmonary hypertension, asthma, cystic fibrosis, diabetes, hypertension, epilepsy, chronic kidney disease, and inflammatory bowel disease. [2][3][4][5][6] Patients with chronic diseases are significantly more likely to experience adverse pregnancy and perinatal outcomes than healthy people. [7][8][9] In addition, people of color, people who are poor, or who are otherwise socially marginalized, experience the worst pregnancy outcomes as a result of the complex intersections between chronic disease and social determinants of health, structural and medical racism, and inadequate access to quality health care. 10,11 Medicine subspecialists are often consulted to provide expert clinical care to people whose chronic diseases are particularly severe, complicated, or rare. 12 Subspecialists are responsible for helping to manage the pregnancies of some of the most complex and severely ill patients-the very patients who are at greatest risk of death during pregnancy. Subspecialists who are armed with salient knowledge and experience may be better able to prepare patients for a healthy pregnancy; counsel patients with accurate and up-to-date information; address issues that might complicate a pregnancy, such as the use of teratogenic medications; advise patients about the safety of their contraception options; identify "red flags" that might suggest worsening disease severity of life-threatening sequelae during pregnancy (e.g., preeclampsia); and make referrals for abortion care when needed and if available. Such competencies may be lifesaving. However, at present, subspecialty medical practice may paradoxically potentiate adverse reproductive outcomes. 10 Subspecialists across the internal medicine disciplines of rheumatology, pulmonary and critical care medicine, gastroenterology/transplant hepatology, cardiology, nephrology, endocrinology, infectious disease, and hematology-oncology, indicate that they do not have the basic knowledge, skills, or resources to manage disease-related aspects of sexual and reproductive health (SRH). [13][14][15][16][17][18][19][20][21][22] Our collective of multidisciplinary subspecialty clinicians and health services researchers has described some of the common challenges that subspecialists feel undermine their provision of SRH

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“…If, on one hand, a broader literature exists on the negative impact of physiological changes on sexual functioning [32,33] or of lifestyle comorbidities affecting sexual health [7,34,35], on the other hand, little attention has been paid towards the importance of other psycho-relational variables in determining the "functioning" of the elderly person during sexual activity [36]. In fact, contrary to the common occidental point of view regarding the sole existence of penetrative sexual activity [37,38], especially for elderly people, or people belonging to populations with specific needs, such as people affected by intellectual or physical disabilities [39], a broader consideration of sexual activity as an activity characterized by many other behaviours seems to be the best way of thinking. Following this consideration, Muller and colleagues elegantly demonstrated the validity of the so-called "second language of sexuality", that is, the importance of affection for the couple's satisfaction [40].…”

Section: Discussionmentioning

confidence: 99%

Dyadic Satisfaction and Shared Affectivity Are Associated with Psycho-Sexual Functioning in Elderly Men and Women

Limoncin

Mollaioli

Sansone

et al. 2022

Sexes

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Objectives The quality of sexual life of elderly people represents an understudied topic of sexual medicine and of psycho-sexology. Hence, we aimed to evaluate the association of specific psycho-relational variables, such as intimacy, increased affective gestures towards a partner (AGtP), daily shared activities, and dyadic satisfaction, with the psychosexual wellbeing of elderly people, expressed in terms of sexual satisfaction. Methods: A cohort of elderly people was selected from a sample of a broader study evaluating the role of sexual activity in protecting the emotional wellbeing of a population subjected to quarantine due to the COVID-19 pandemic. Specifically, the presence of sexual dysfunctions, the emotional wellbeing (i.e., absence of anxiety and/or depression), and the quality of the partners’ relationships were studied. For the study’s purpose, the Sexual Health Inventory for Males (SHIM), the Female Sexual Function Index (FSFI), the Orgasmometer and the Orgasmometer-F, the Generalized Anxiety Disorder scale (GAD-7), the Patient Health Questionnaire (PHQ-9), and the Dyadic Adjustment Scale were adopted. Results: A group of 124 elderly subjects (≥60) was selected for the study’s purposes. Among these, 84% were males (120/124), and 16% were females (20/124). All the subjects declared to be in a stable relationship and to be sexually active during the first lockdown period. Gender differences were found for the Dyadic Satisfaction subscale (males: 37.04 ± 6.57; females: 32.85 ± 10.04; p < 0.05) and the Orgasmometer (males: 7.64 ± 1.30; females: 6.60 ± 2.46; p < 0.01). Linear regression analysis showed the association between higher Orgasmometer scores and: (i) the absence of sexual dysfunctions (β = −1.213; SE = 0.271; p < 0.0001), (ii) higher dyadic satisfaction (β = 0.042; SE = 0.019; p < 0.05), and (iii) reduced shared activities with partner (β = −0.463; SE = 0.143; p < 0.01) and increased affective gestures towards partner (DAS measured AGtP) (β = 0.595; SE = 0.065; p < 0.0001). Post hoc analysis of ANCOVA with the Bonferroni correction method showed a significant difference in the Orgasmometer scores between subjects with and without sexual dysfunction (mean difference: 2.102; SE = 0.340; pBonf < 0.001), with healthy subjects reporting higher scores compared to dysfunctional ones. Conclusions: It is reasonable to suppose that, beyond the presence of sexual dysfunctions, the sexual health of elderly people may benefit from the quality of the relationship, and, specifically, from the presence of affective gestures towards the partner and the dyadic satisfaction. To the contrary, the quantity of time spent together, sharing specific activities, may be considered a factor worsening relational and sexual health. These data should be considered during the evaluation of sexual health among elderly people.

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Pediatric Neurologists’ Perspectives on Sexual and Reproductive Health Care for Adolescent and Young Adult Women With Epilepsy and Intellectual Disability

Cited by 6 publications

References 29 publications

Uncovering Reproductive Injustice Toward Women With Disabilities

Uncovering Reproductive Injustice Toward Women With Disabilities

A blueprint for a new model of sexual and reproductive health care in subspecialty medicine

Dyadic Satisfaction and Shared Affectivity Are Associated with Psycho-Sexual Functioning in Elderly Men and Women

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