Family Caregivers' Attitudes and Perspectives About the Sexual and Reproductive Health of Women With Intellectual and Developmental Disabilities: An Online Survey.

Although sexual and reproductive health is critically important for women with intellectual and developmental disabilities (IDD), there is limited research elucidating the role of family caregivers in assisting women with IDD access sexual and reproductive health services and information. Understanding the family caregivers' attitudes and perspectives is essential to improving access to sexual and reproductive health services and information for women with IDD. A cross-sectional online survey of family caregivers of women with IDD was administered between June and October 2018. Quantitative analysis was conducted for closed-ended responses, and qualitative analysis was conducted for open-ended responses. The analytic sample included 132 family caregivers. Most participants were parents and reported being closely involved in their family member's access to sexual and reproductive health services and information. Although most participants expressed that sexual and reproductive health services and information are essential for women with IDD, qualitative analysis of participants' open-ended responses revealed both supportive and restrictive attitudes and perspectives on sexual and reproductive health services and information for women with IDD. Supportive attitudes and perspectives included (1) "knowledge is power;" (2) supported decision-making; and (3) protection against sexual abuse. Restrictive attitudes and perspectives included (1) dependent on the individual; (2) lack of autonomy; and (3) placing responsibility on disability. Greater attention from policymakers and practitioners to systems-level changes, including universal and accessible sexual education for women with IDD, supported decision-making, and sexual abuse prevention measures, are urgently needed.

Reproductive justice for disabled people post-Dobbs: A call-to-action for researchers.

The recent Supreme Court ruling in Dobbs v. Jackson Women's Health Organization endangers reproductive freedom, particularly for marginalized communities, including disabled people. Disability and health equity researchers possess unique insights into the needs and experiences of disabled people, making our involvement crucial in response to the Dobbs decision. Accordingly, guided by disability justice and reproductive justice principles, researchers should undertake disability-inclusive studies on the consequences of abortion restrictions, advocate for policy changes that uphold the reproductive autonomy of disabled people, and collaborate with disability-led movements advocating for reproductive freedom. Indeed, it is imperative for researchers to actively promote the inclusion and self-determination of disabled people regarding their reproductive health and well-being. Given the escalating threats to reproductive freedom and their profound impact on disabled people, there has never been a more pivotal moment for disability and health equity researchers to join the fight for reproductive justice.

Rethinking systemic ableism: A response to Zagouras, Ellick, and Aulisio.

Introduction: This article is a response to Zagouras, Ellick, and Aulisio who presented a case study justifying the questioning of the capacity and autonomy of a young woman with a physical disability who was pregnant and facing coercive pressure to terminate. Case description: Julia is described as a 26-year-old woman with a neurological disability that requires her to receive assistance with activities of daily living. She was described as living with her parents who provided her with personal care assistance. Julia became pregnant and her parents wished her to terminate because they did not want to care for her child in addition to her. In fact, Julia's parents threatened her with institutionalization if she did not elect to terminate the pregnancy. Her health care team questioned her decision-making capacity based on her alleged "mental age" and experiences of being sheltered and excluded. The health care team used directive tactics to convince Julia to terminate the pregnancy, which describe as both an ethical and feminist intervention. Discussion: The current authors take issue with the case analysis provided by and argue that they neglected to account for numerous instances of systemic ableism that adversely affected Julia, demonstrated prejudicial and judgmental attitudes toward pregnancy and disability, inappropriately questioned her decision-making capacity by infantilizing her, misconstrued the feminist concept of relational autonomy, and colluded with coercive interference from family members. This is a classic example of discriminatory and culturally incompetent reproductive health care for a disabled woman.

The evolution of disability language: Choosing terms to describe disability.

The use of disability language in academic scholarship has changed significantly over the past several years. Although it would be helpful to have concrete guidelines and rules that could generalize across situations regarding disability terminology, language itself is a phenomenon that evolves and varies over time in response to cultural shifts. People with disabilities have varied preferences about the language they use to describe themselves and what language they prefer to be used to describe them. At the same time, disability researchers, including the current authors, are often given prescriptive guidance by journal editors about the specific disability language they should use (i.e., person-first language). Thus, the tension between approaches to disability language underscores a need for open dialogue about a culturally informed choice of disability language in scholarly publications. Accordingly, this commentary discusses the history and evolution of disability language, explores current trends, and recommends language for academic articles.

Barriers and Solutions to Passing State Legislation to Protect the Rights of Parents With Disabilities: Lessons From Interviews With Advocates, Attorneys, and Legislators.

Parents with disabilities experience discrimination within the child welfare, family law, and adoption and foster care systems. In response, there have been increasing calls for states to pass legislation prohibiting discrimination against parents with disabilities, and as of 2020, 28 states have passed or are considering such legislation. This qualitative study explored the perspectives of 19 advocates, attorneys, and legislators on barriers and solutions for passing legislation to protect the rights of parents with disabilities. Participants identified three barriers: (a) legislators' pejorative attitudes toward parents with disabilities, (b) external opposition, and (c) legislative barriers. Participants also identified eight solutions: (a) cross-disability advocacy, (b) education, (c) relationship-building, (d) bipartisanship, (e) support from state and national organizations, (f) strong sponsors, (g) incrementalism, and (h) model legislation. Study findings should help to inform ongoing legislative advocacy to protect the rights of parents with disabilities.

Experiences of Breastfeeding among Disabled Women.

BACKGROUND: Although breastfeeding has been extensively studied, there remains a paucity of data about the breastfeeding experiences of disabled women. Despite indications of similar pregnancy rates, disabled women seem to breastfeed at lower rates. Emerging research on the intersection of breastfeeding and disability has begun to shed light on how aspects of disability may impact breastfeeding. METHODS: This digital and participatory action research study used semistructured video or telephone interviews to evaluate the experiences of breastfeeding among 24 disabled women through descriptive content analysis. The cross-disability sample was composed of women with self-identified intellectual, developmental, physical, sensory, and psychiatric disabilities. Some women had multiple disabilities. RESULTS: Qualitative analysis revealed four themes relating to breastfeeding among disabled women: 1) communication difficulties with lactation consultants, 2) milk supply and latch problems, 3) intense pressure to breastfeed, and 4) positive interactions with health care providers. CONCLUSIONS: This study provides new information about the breastfeeding experiences of women with disabilities. Our findings suggest that disabled women should be better supported in their breastfeeding decisions and require greater access to disability-affirmative and informative clinical resources and accessible communication.

Supporting disabled parents and their families: perspectives and recommendations from parents, attorneys, and child welfare professionals.

While it is well-established that parents with disabilities and their families are over-represented in the child welfare system, no known research has described the parents,' child welfare professionals,' and attorneys' perspectives on the system's capacity to support them or their recommendations for improvement. This qualitative phenomenological study involved semi-structured interviews with 15 disabled parents, 15 child welfare professionals, and 15 parent attorneys. Respondents agreed that the child welfare system lacks expertise on disability and adequate services for disabled parents, and holds negative attitudes about them. Respondents recommended robust training for professionals on parents with disabilities, and individually-tailored services for disabled parents.

Adaptive parenting strategies used by mothers with physical disabilities caring for infants and toddlers.

There is a paucity of information concerning adaptive parenting strategies utilised by mothers with physical disabilities, particularly during early motherhood. The purpose of this study is to describe the adaptive strategies used by mothers with physical disabilities during early motherhood. This qualitative study included semi-structured telephone interviews between January and March 2014 with US mothers with a range of physical disabilities who had a baby within the past 10 years (N = 25). Interviews were audio-recorded, professionally transcribed, and coded using content analysis. Analysis revealed five broad themes indicating important adaptive parenting strategies for mothers with physical disabilities caring for infants and toddlers: They are as follows: (a) acquiring or modifying baby-care equipment, (b) adapting the home environment, (c) accessing information and supports, (d) developing communication strategies to facilitate safety, and (e) receiving assistance from others. This study indicates that mothers with physical disabilities employ a variety of adaptive strategies during early motherhood. The findings from the study suggest the need for more availability of supports and equipment for mothers with physical disabilities as well as information for prospective mothers with disabilities. In addition, healthcare and social work professionals must receive training about adaptive parenting strategies.

Reproductive Cancer Treatment Hospitalizations of U.S. Women With Intellectual and Developmental Disabilities.

There is a dearth of existing research on the treatment of reproductive cancers among women with intellectual and developmental disabilities (IDD). This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared the prevalence of reproductive cancer treatment hospitalization discharges among women with and without IDD. Discharges linked to women with IDD had higher incidences of cancer of the uterus and lower prevalence of cancer of the cervix. Moreover, discharges linked to women with IDD indicated these women were younger, had longer hospital stays, and were more likely to have public insurance coverage. Therefore, further research and targeted interventions to increase cancer prevention and screening are urgently needed.

Breastfeeding Among Women With Physical Disabilities in the United States.

BACKGROUND: The benefits of breastfeeding are well established, and breastfeeding is now widely practiced in the United States. Although increasing numbers of women with physical disabilities are having children, little information is available about breastfeeding practices among these women. Nonetheless, the children of women with physical disabilities should benefit from breastfeeding just as children of nondisabled mothers do. Research aim: This study aimed to explore the facilitators and barriers to breastfeeding among women with physical disabilities. METHODS: This study involved semistructured telephone interviews with a convenience sample of women ( N = 25) with diverse physical disabilities from across the United States. All participants had given birth within the past 10 years. Interviews were audio-recorded, professionally transcribed, and analyzed using content analysis. RESULTS: Analyses found four broad themes indicating facilitators to breastfeeding: (a) adaptations and equipment, (b) use of breast pump, (c) physical assistance from others, and (d) peer support. We also found five broad themes suggesting barriers to breastfeeding: (a) lack of supports, (b) disability-related health considerations, (c) limited information, (d) difficulties with milk production, and (e) difficulties latching. CONCLUSION: The need for greater supports for women with physical disabilities who desire to breastfeed as well as information for women and their clinicians about facilitating breastfeeding.

The Health and Economic Well-Being of US Mothers with Intellectual Impairments.

BACKGROUND: While the United States has seen increased attention by policymakers on the rights of parents with disabilities, there is limited understanding of the health and economic well-being of parents with intellectual impairments. This study compares the health and economic well-being of mothers with and without intellectual impairments. METHODS: This descriptive, exploratory study is a secondary analysis of the Fragile Families and Child Wellbeing Study. This study includes a subsample of mothers of three-year-old children (n = 1561), including mothers with intellectual impairments (n = 263) and without intellectual impairments (n = 1298). RESULTS: US Mothers with intellectual impairments are more likely to report serious health conditions, have less instrumental support, live in poverty, receive public benefits and experience certain material hardships. CONCLUSION: Findings from this study indicate the need for policies and programmes to support parents with intellectual impairments by addressing their health and economic needs.

Family Attitudes and Reactions toward Pregnancy among Women with Physical Disabilities.

BACKGROUND: Historically, people with disabilities who become parents have confronted discriminatory societal attitudes and public policies. Today, although more women with disabilities are bearing children, little is known about the perceptions of their pregnancies, even among their family members. In addition, little is understood about how family members' attitudes and reactions affect women with physical disabilities around the time of pregnancy. METHOD: This qualitative study involved interviews with 25 women with physical disabilities from across the United States who had a baby within the past 10 years. Semistructured telephone interviews were conducted. Interviews were audio-recorded, professionally transcribed, and analyzed using an iterative, interpretive process. FINDINGS: Women reported a wide range of physical disabilities. Before, during, and after pregnancy, participants reported experiencing wide-ranging attitudes and reactions from family members concerning their pregnancies. These responses fell into six categories: 1) initial negative reactions, 2) concern about mother's well-being, 3) questioning of parenting capability, 4) negative perceptions of disability, 5) genetic concerns, and 6) excited and supportive. CONCLUSIONS: This study sheds light on the attitudes and reactions toward pregnancy that women with physical disabilities experience from family members. Our findings suggest the need for increased social support and family education. Greater availability of peer supports as well as information for women with disabilities considering pregnancy is also needed.

Health Care Changes for Children with Special Health Care Needs, 2005-2011.

Objective This study compared health care utilization of children with special health care needs in 2005/06 and 2009/10. Methods Using data from the National Survey of Children with Special Health Care Needs, this study compared the health care utilization of children with special health care needs in 2005/06 (n = 40,723) and 2009/10 (n = 40,242). Descriptive statistics characterize the sample during the 2005/06 and 2009/10 surveys. Logistic regression models examined the unmet needs for specific health care and support services, delayed care, coordinated care, and medical home. Results Compared to 2005/06, in 2009/10 children with special health care needs had greater unmet dental and therapy needs and less care coordination of health services as well as access to medical home services. Conclusions These findings indicate that additional measures are needed to improve the health care access of children with special health care needs.

Health of Young Children Whose Mothers Have Intellectual Disability.

Understanding the needs and experiences of parents with intellectual disability (ID) and their children is critical to ensuring that policies can effectively support these families. This research analyzed data from the Fragile Families and Child Wellbeing Study to examine the health outcomes of U.S. children whose mothers have (n = 263) and do not have ID (n = 1,298). Compared to mothers without ID, mothers with ID experienced worse outcomes related to socioeconomic status, limited support networks, and poor self-reported health. However, after controlling for sociodemographic characteristics, mother's intellectual disability was not associated with a child having fair or poor health, asthma, or being overweight or obese.

Consumers' and workers' perspectives about consumer-directed services in the United States.

BACKGROUND: Consumer direction is a service delivery model that shifts decision-making from agencies to the individuals they serve. Using government funding, consumers hire, supervise, and schedule their own staff and maintain control over the delivery of their services. OBJECTIVE: This study sought to understand the process of consumer direction as well as the experiences and perspectives of both the consumers and employees. The study also sought to better understand if and how consumer direction allows the consumer to direct his or her life, the impact consumer direction may have on the individual's health and health care, and how employment in consumer directed programs impacts the workers providing direct care services. METHOD: This qualitative study included interviews with consumers (N = 20) and workers (N = 15) in Virginia, a southern state in the US. Semi-structured phone interviews were conducted by one member of the research team and transcribed and coded for themes by the research team using grounded theory methodology. RESULTS: Consumers reported greater control over their services and increased access to health care, compared to what they previously received with traditional services. Conversely, consumers reported challenges in managing their staff and fulfilling the role of an employer. Employees reported a lack of training prior to starting their jobs, as well as an inability to live off on low hourly wages. Still, the majority of employees reported job satisfaction and fulfillment. CONCLUSION: Policymakers should expand and strengthen the consumer directed program.

Comparison of TATA-binding protein recognition of a variant and consensus DNA promoters.

Assembly of transcription pre-initiation complexes proceeds from the initial complex formed between "TATA" bearing promoter DNA and the TATA-binding protein (TBP). Our laboratory has been investigating the relationships among TATA sequence, TBP center dot TATA solution structure, recognition mechanisms, and transcription efficiency. TBP center dot TATA interactions have been modeled by global analysis of detailed kinetic and thermodynamic data obtained using fluorimetric and fluorometric techniques in conjunction with fluorescence resonance energy transfer. We have reported recently that TBP recognition of two consensus promoters, adenovirus major late (AdMLP: TATAAAAG) and E4 (TATATATA), is well described by a linear two-intermediate mechanism with simultaneous DNA binding and bending. Similar DNA geometries and high transcription efficiencies characterize these TBP x TATA complexes. Here we show that, in contrast to the consensus sequences, TBP recognition of a variant sequence (C7: TATAAACG) is described by a three-step model with two branching pathways. One pathway proceeds through an intermediate having severely bent DNA, reminiscent of the consensus interactions, with the other branch yielding a unique conformer with shallowly bent DNA. The resulting TBP x C7 complex has a dramatically different solution conformation than for TBP x DNA(CONSENSUS) and is correlated with diminished relative transcription activity. The temperature dependence of the TBP x C7 helical bend is postulated to derive from population shifts between the conformers with slightly and severely bent DNA.