Primary care physicians who care for adults with intellectual disability often lack experience with the population, and patients with intellectual disability express dissatisfaction with their care. Establishing a secure primary care relationship is particularly important for adults with intellectual disability, who experience health disparities and may rely on their physician to direct/coordinate their care. The authors conducted semistructured interviews with 22 family physicians with the goal of identifying educational needs of family physicians who care for people with intellectual disability. Interviews were transcribed and coded using tools from grounded theory. Several themes related to educational needs were identified. Physician participants identified themes of “operating without a map,” discomfort with patients with intellectual disability, and a need for more exposure to/experience with people with intellectual disability as important content areas. The authors also identified physician frustration and lack of confidence, compounded by anxiety related to difficult behaviors and a lack of context or frame of reference for patients with intellectual disability. Primary care physicians request some modification of their educational experience to better equip them to care for patients with intellectual disability. Their request for experiential, not theoretical, learning fits well under the umbrella of cultural competence (a required competency in U.S. medical education).
Adults with intellectual disabilities (ID) face multiple health disparities and challenges to accessing health care. Little is known about sexual health care of this population and about how to optimize women's reproductive health care for women with intellectual disabilities. Women with ID face important barriers to care, including lack of provider training and experience, hesitancy to broach the topic of sexual health, a lack of sexual knowledge and limited opportunities for sex education, disability-related barriers, higher prevalence of sexual abuse and assault, often underreported, lack of dialogue around this population's human right to consensual sexual expression, undertreatment of menstrual disorders, and legal and systemic barriers. We conducted a limited literature review related to six aspects of sexual health care of women with ID, including barriers to sexual health care, sex education, sexual abuse and consensual sexuality, contraception, screening for sexually transmitted infections and cervical cancer, and pregnancy and parenting. After providing background information about each topic, we suggest practice recommendations for primary care clinicians, using a rights-based framework.
PURPOSE Women with intellectual disabilities (or mental retardation) are living longer, receiving primary care in the community, and have equal rates of breast cancer compared with women in the general population, but they have lower rates of mammography. Although several public campaigns have successfully raised the mammography rate for racial and ethnic minority women, they have not penetrated the community of women with intellectual disabilities. No research to date has explored potential barriers to mammography for these women by involving the women themselves as participants. METHODSWe undertook a qualitative study to explore the perceptions and understanding of mammography for women with intellectual disabilities and some of the potential reasons they would or would not have the test. Twentyseven intellectually disabled women were recruited through a variety of community groups and interviewed using a semistructured interview guide. Data were analyzed using qualitative techniques from grounded theory.RESULTS Participants in this study described being poorly prepared for mammography: they did not understand its purpose and were not prepared for the logistics of the experience. The latter was more upsetting to participants and contributed to their negative perceptions of mammography. Participants reported feeling unprepared and singled out for being unprepared, despite their desire to have at least 1 mammogram, as do other women their age.CONCLUSIONS Women with intellectual disabilities perceive mammography differently than do women who do not have intellectual disabilities, and their perception is informed by inadequate knowledge, anxiety, and inadequate preparation. These themes should be considered when planning cancer prevention interventions with this population and when counseling individual women in the clinical setting.
Women with intellectual disabilities (ID) need thoughtful, well-coordinated care from primary care physicians. They are particularly susceptible to experiencing disparities in care because of varied participation in shared decision making. This review of the current literature comments on the quantity and quality of existing studies regarding several key women's health issues: menstrual disorders, cervical and breast cancer screening, contraception, and osteoporosis. A review of the current thinking regarding ethical and legal issues in medical decision making for these women is also provided. We found that there are several high-quality studies recommending early and frequent screening for osteoporosis, which is more common in women with ID. Smaller and fewer studies comment specifically on techniques for accomplishing the gynecological examination in women with ID, although the cervical cancer screening recommendation should be individualized for these patients. Consensus data on the management of menstrual problems and contraception in women with ID is provided. There are some data on breast cancer incidence but few articles on methods to improve screening rates in women with ID. Intellectual disability (ID) refers to a disability that is characterized by significant limitations both in cognitive functioning and in adaptive behavior (conceptual, social, and practical Women's health issues are important concerns among those with ID. In the past 40 years, it has been suggested that women's health should shift to a focus tailored to the individual patient, taking into account her personal beliefs and respecting her choices. The preface to the 1984 edition of Our Bodies, Our Selves states its goals "to reach as many women as possible with the tools which will enable them to take greater charge of their own health care and their lives, deal with the existing medical system and fight wherever possible for improvements and changes."6 While physicians' responsibilities to regard women as equal partners in making decisions about their health care has been debated, 7 patients' reproductive rights and choices have remained an important topic of discussion. Women with ID, however, benefit unevenly from this change in thinking. It is unclear how women who may lack some of the skills to make everyday decisions should partner in decisions about their health care. In addition, in a field where research has lagged on women's health topics, how do we interpret the existing evidence base for women with This article was externally peer reviewed.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.