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Public health qualitative research has largely failed to achieve full inclusion of people with disabilities and Black people and Latinx/as. Although there is a small, but growing, community of academic researchers from each of these communities, there has been limited involvement of non-academic community members in research. While Community-Based Participatory Research (CBPR) has informed the inclusion of marginalized groups in research for decades, instances of full inclusion of disabled Black people and Latinx/as in public health research have been minimal. One way to ensure the inclusion of Black/Latinx community members with disabilities is to involve them as peer researchers. As part of a qualitative study examining pregnancy experiences of individuals with physical disabilities from Black/Latinx communities, academic researchers trained four peer researchers to conduct interviews and analyze the data. This paper describes our approach, which may serve as a model for training peer researchers in qualitative research methodology for future studies. All peer researchers were women who identified as Black or Latina parents with physical disabilities. This approach was chosen due to the study's focus on the intersections of disability, race, ethnicity, and pregnancy, and applied a disability justice lens. Although CBPR offers important principles for research existing literature suggests CBPR is not always inclusive and power sharing. Therefore, we developed a research training model which places a unique and timely focus on the intersections of CBPR, racial and disability justice, the importance of building the capacity of Black and Latina disabled peer researchers, and its importance to building community relationships and trust. [ABSTRACT FROM AUTHOR]

The adverse consequences of postpartum depression on the health of the mother and her child are well documented. However, there is little information on postpartum depression among mothers with disabilities. This study examines the patterns of depression and depressive symptoms before, during and after pregnancy and the association between depression before and during pregnancy and postpartum depression symptomatology (PPD) among women with and without disabilities. Data from the 2009-2011 Rhode Island Pregnancy Risk Assessment Monitoring System (PRAMS) were analyzed in 2013. Almost 30% (28.9%; 95% CI 22.8-35.8) of mothers with disabilities reported often or always feeling down, depressed or sad after childbirth compared to 10% of those without disabilities (95% CI 8.9-11.3). Compared to other women in the study, women with disabilities had a greater likelihood for PPD symptoms (RR 1.6, 95% CI 1.1-2.2) after accounting for sociodemographics, maternal characteristics related to PPD, and depression before and during pregnancy. Adjusting for other covariates, self-reported prenatal diagnosis of depression was not associated with symptoms of PPD and depression during pregnancy was marginally associated with PPD symptomatology for women with disabilities. Women with disabilities are at a greater risk of experiencing symptoms of postpartum depression than other women. Screening for PPD among new mothers with disabilities and timely referral of those with PPD diagnosis are vital to the health of mothers with disabilities and their children. Keywords Disability * Postpartum depression * Women with disabilities * Pregnancy, Introduction Increasing numbers of women with disabilities are choosing to become pregnant and bear children [1, 2]. A recent analysis of National Health Interview Survey data found that 2% of [...]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Previous qualitative studies suggest that women with physical disabilities face disability-specific barriers and challenges related to prenatal care accessibility and quality. This study aims to examine the pregnancy and prenatal care experiences and needs of U.S. mothers with physical disabilities and their perceptions of their interactions with their maternity care clinicians. Materials and Methods: We conducted the first survey of maternity care access and experiences of women with physical disabilities from 37 states. The survey was disseminated in partnership with disability community agencies and via social media and targeted U.S. women with a range of physical disabilities who had given birth in the past 10 years. The survey included questions regarding prenatal care quality and childbirth and labor experiences. Results: A total of 126 women with various physical disability types from 37 states completed the survey. Almost half of the respondents (53.2%) reported that their physical disability was a big factor in their selection of a maternity care provider and 40.3% of women reported that their prenatal care provider knew little or nothing about the impact of their physical disability on their pregnancy. Controlling for maternal demographic characteristics and use of mobility equipment, women who reported that their prenatal care provider lacked knowledge of disability and those who felt they were not given adequate information were more likely to report unmet needs for prenatal care. Conclusions: The findings from this study suggest the need for training and education for clinicians regarding the prenatal care needs of women with physical disabilities. [ABSTRACT FROM AUTHOR]

Background: Women with physical disabilities increasingly aspire to become pregnant and bear children. Limited information about the potential interaction of their disabling conditions with pregnancy and childbirth exists to guide these women and their clinicians. Materials and Methods: The interview guide was created with questions on topics such as pregnancy complications and secondary conditions, the impact of prior surgeries, experiences with pain relief during labor, and the impact on women's independence and participation in life activities. Interviews were conducted by telephone with 25 women with physical disabilities. They were subsequently transcribed verbatim and analyzed by using Atlas TI. Results: Women generally reported a relatively modest impact of disabling conditions on their pregnancies. Most women were satisfied with the mode of delivery, but they experienced challenges during the labor and delivery process. The women found that careful advanced planning was helpful in managing the impact of their disabling conditions. The involvement of clinicians with disability-related expertise was, in some cases, another factor that contributed to a positive outcome. Conclusions: The importance of advanced planning and the utility of involving clinicians with disability-related expertise suggest that the use of integrated, interdisciplinary team approaches could promote quality care by facilitating improved planning and management. Additional clinical research is needed to provide women and their clinicians with more information on potential complications and options for labor and delivery. [ABSTRACT FROM AUTHOR]

Definitions of disability have evolved over time. Consistent with the biopsychosocial model used by the World Health Organization, we conceptualize disability as an interaction between a person's functional impairments or chronic health conditions and the physical and social environment. Having a disability is not synonymous with poor health, and maintaining and improving health is equally important for both people with and people without disabilities. In this article we review estimates of disability prevalence in the US and present evidence of differences in prevalence by race, ethnicity, and sexual orientation; health disparities by disability status and type of disability; and health disparities for people whose disability intersects with other forms of marginalization. We suggest policy changes to advance equity, reduce disparities, and enhance the health and well-being of all Americans with disabilities.

Background: Women with disabilities are at risk for poor birth outcomes. Little is known about longer-term health and healthcare utilization of infants of women with disabilities., Objectives: We identified women at risk for disability and evaluated their infants' emergency department (ED) utilization during the first year of life., Study Design: This population-based cohort study used Massachusetts 2007-2009 birth certificates linked to 2007-2010 hospital discharge data. Access Risk Classification System categorized ICD-9 CM/CPT codes into disability risk categories. Infant ED visits were evaluated overall and by severity (emergent/intermediate vs. non-emergent). Cox proportional hazards models provided adjusted estimates. Results were stratified by gestational age (preterm, < 37 weeks, term, 37 + weeks)., Results: Of 218,599 women, 6.7% were at risk of disability. Infants born to women at risk had a higher rate of ED visits in their first year than infants born to women not at risk: 0.85 visits/person-year (95% CI 0.84-0.87) vs. 0.55 (0.55-0.55) for term, 0.74 (0.70-0.77) vs. 0.55 (0.54-0.56) for preterm. Utilization varied by maternal diagnosis. Emergent/intermediate and non-emergent visits were both elevated among infants born to women at risk for disability. In adjusted analyses, term infants of women with musculoskeletal diagnoses (HR = 1.3, 95% CI 1.2-1.4) and preterm infants of women with circulatory diagnoses (HR = 1.2, 1.0-1.3) had the highest hazards of ED visit vs. infants of women not at risk of disability., Conclusion: Maternal disability risk is associated with postnatal infant ED utilization; utilization varies by maternal diagnosis. Interventions to improve health of infants born to women with disabilities are warranted., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: Women with physical disabilities (WPD) experience major barriers to care during pregnancy. Lack of education about disability in health professionals' education is a pervasive barrier to quality care. In an effort to explore this issue, this study examined the issue from the perspective of obstetric clinicians who provide care to WPD., Objective: This qualitative descriptive study explored perspectives of obstetric clinicians who provide perinatal care for WPD to inform the educational preparation of clinicians to care for women with disabilities., Method: We contacted 33 obstetric clinicians who care for pregnant WPD. Thirteen obstetricians and one nurse midwife participated in semi-structured telephone interviews. Interview transcriptions were content analyzed to identify initial themes. Investigators discussed and revised the themes as additional transcripts were reviewed and new themes were identified., Results: Themes identified from transcript analyses included: lack of education at any level including during postgraduate residency and fellowship on care of pregnant WPD, unplanned career pathway, educating other clinicians, and positive and negative experiences providing obstetrical care to women with physical disability. Several clinicians provided this care because of requests from other clinicians and did not begin their careers with the goal of providing obstetric care to women with physical disabilities. None had received formal education or training including during their residencies or fellowships. The clinicians described very rewarding experiences caring for WPD., Conclusions: The experiences reported by this study's participants suggest the need to include disability in undergraduate and postgraduate education and training to improve obstetric care to WPD., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: Women with physical disabilities are known to experience disparities in maternity care access and quality, and communication gaps with maternity care providers, however there is little research exploring the maternity care experiences of women with physical disabilities from the perspective of their health care practitioners., Objective: This study explored health care practitioners' experiences and needs around providing perinatal care to women with physical disabilities in order to identify potential drivers of these disparities., Methods: We conducted semi-structured telephone interviews with 14 health care practitioners in the United States who provide maternity care to women with physical disabilities, as identified by affiliation with disability-related organizations, publications and snowball sampling. Descriptive coding and content analysis techniques were used to develop an iterative code book related to barriers to caring for this population. Public health theory regarding levels of barriers was applied to generate broad barrier categories, which were then analyzed using content analysis., Results: Participant-reported barriers to providing optimal maternity care to women with physical disabilities were grouped into four levels: practitioner level (e.g., unwillingness to provide care), clinical practice level (e.g., accessible office equipment like adjustable exam tables), system level (e.g., time limits, reimbursement policies), and barriers relating to lack of scientific evidence (e.g., lack of disability-specific clinical data)., Conclusion: Participants endorsed barriers to providing optimal maternity care to women with physical disabilities. Our findings highlight the needs for maternity care practice guidelines for women with physical disabilities, and for training and education regarding the maternity care needs of this population., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Childbirth is widely acknowledged as one of the most painful experiences most women will undergo in their lifetimes. Alleviating labor and delivery pain for women with physical disabilities can involve an additional level of complexity beyond that experienced by most women, but little research has explored their experiences., Objective: The purpose of this study was to explore the experiences of women with physical disabilities with respect to pain relief during labor and delivery with the goal of informing their care., Methods: Data were collected using semi-structured interviews with twenty-five women with physical disabilities from across the United States., Results: Women expressed specific preferences for the method of pain relief. Some confronted systemic barriers in exploring their options for pain relief, while others were given a choice. At times, anesthesiologists lacked knowledge and experience in caring for women with disabilities. Conversely, some women described how the administration of anesthesia was meticulously planned and attributed their positive labor and delivery experiences to this careful planning., Conclusions: Advanced, individualized planning and evaluation of their options for pain relief was most satisfying to women and enabled them to make an informed choice. This approach is consistent with the recommendations of clinicians who have successfully provided pain relief during labor to women with complex physical disabilities. Clinicians who have successfully delivered babies of women with these and similar disabilities emphasize the importance of a team approach where the anesthesiologist and other specialists are involved early on in a woman's care., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: Despite concerns raised in the literature on the adverse pregnancy outcomes of women with physical disabilities, there is little information about unmet needs of women with physical disabilities during pregnancy and childbirth., Objective: This article provides an in-depth examination of unmet health care needs during and around the time of pregnancy among a sample of women with physical disabilities. It also offers recommendations to other women with physical disabilities who are considering pregnancy., Methods: Twenty-five phone interviews were conducted with women with physical disabilities from across the United States who had a baby in the past ten years. Individual semi-structured qualitative interviews lasting about 2 h were conducted. Interviews were audio-recorded, transcribed, and analyzed using an iterative, interpretive process., Results: Women reported a wide range of disabling conditions. Analysis revealed three broad themes related to unmet needs during pregnancy among women with physical disabilities. They included (1) clinician knowledge and attitudes, (2) physical accessibility of health care facilities and equipment, (3) need for information related to pregnancy and postpartum supports. The women also provided recommendations to other women with disabilities who are currently pregnant or thinking of becoming pregnant. Recommendations related to finding a clinician one trusts, seeking peer support, self-advocating, and preparing oneself for the baby., Conclusions: This study sheds light on the unmet needs and barriers to care of women with mobility disabilities during pregnancy and childbirth. The study findings highlight the need for policy and practice recommendations for perinatal care of women with mobility disabilities., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Studies suggest that women with disabilities experience health and health care disparities before, during, and after pregnancy. However, existing perinatal health and health care frameworks do not address the needs and barriers faced by women with physical disabilities around the time of pregnancy. A new framework that addresses perinatal disparities among women with physical disabilities is needed., Objective: To propose a framework for examining perinatal health and health care disparities among women with physical disabilities., Methods: We developed a perinatal health framework guided by the International Classification of Functioning, Disability and Health (ICF) and the integrated perinatal health framework by Misra et al., Results: The proposed framework uses a life span perspective in a manner that directly addresses the multiple determinants specific to women with physical disabilities around the time of pregnancy. The framework is based on longitudinal and integrated perspectives that take into account women's functional status and environment over their life course., Conclusion: The perinatal health framework for women with physical disabilities was developed to inform the way researchers and health care professionals address disparities in perinatal health and health care among women with physical disabilities., (Copyright © 2015 Elsevier Inc. All rights reserved.)

The training of health care providers has been identified as key to resolving the health disparities experienced by persons with disabilities. We contend that: 1) cultural competency provides a useful conceptual framework for teaching disability-related content to health professions students; 2) educational experiences can be structured to reflect the socio-cultural complexity of the 'disability culture;' 3) desired competencies associated with culture can be defined with regard to professionals' approach to patients with disabilities; 4) exposure to persons who have disabilities in their homes allows the student to make connections between the nuances of daily life with a disability and one's health care needs; 5) the framework allows the disability culture to be integrated with other cultural contexts, including race and ethnicity; and 6) the framework acknowledges the potential impact of providers' conscious or unconscious recognition of their potential membership in the disability culture on their approach to patients with disabilities., (Copyright © 2013 Elsevier Inc. All rights reserved.)

According to the World Report on Disability, physicians worldwide generally lack training about caring for persons with disabilities, thus frequently compromising their health care experiences and health outcomes. Many U.S. physicians are similarly untrained about critical aspects of providing care to persons with disabilities, perhaps contributing to disparities in their care. Recognizing these inadequacies, U.S. medical educators are beginning to develop core competencies for trainees relating to the care of patients with disabilities, including understanding patients' perceptions of their quality of life and skills in providing patient-centered care. Having today's physicians, even when genuinely well-intentioned, retain control over designing disability-related training programs for future doctors may miss critical issues in caring empathically and effectively for persons with disabilities. Involving persons with disabilities in identifying training needs and implementing curricula for future physicians may offer important opportunities for ensuring their competency to provide patient-centered care to persons with disabilities., (Copyright © 2012 Elsevier Inc. All rights reserved.)

Background: The employment rate among adults with disabilities is significantly lower than that among adults without disabilities. Ensuring access to rehabilitative and other health care services may help to address health-related barriers to employment for working-age people with disabilities. This study examined the relationship of unmet need for 6 disability-related health care services to current employment status among working-age adults with disabilities enrolled in the Massachusetts Medicaid (MassHealth Standard) program., Methods: Study participants included 436 MassHealth Standard members aged 19 to 64 who responded to the 2005/2006 MassHealth Employment and Disability Survey. Variables included members' demographic characteristics; Medicaid health plan and Medicare enrollment; members' self-report of potentially disabling conditions and current health status; access to health care as well as need and unmet need for 6 specific disability-related health care services (medications, mental health services, substance abuse services, medical supplies, durable medical equipment, personal assistance services); and current employment status., Results: Fifteen percent of members reported currently working. Logistic regression analysis showed that (controlling for demographics, disability, health status, and other factors) members with greater unmet need were significantly less likely to be working (odds ratio = 0.58; 95% confidence interval = 0.33 to 0.99). Members' experience of unmet need was significantly greater for physical health services (supplies, durable medical equipment, personal assistance services) than for behavioral health services (mental health and substance abuse services) or medications. Working members generally rated services as important to work. Approximately 10% to 22% of nonworking members thought they would be able to work if needs were met., Conclusions: Meeting unmet needs for disability-related health care services may result in modest increases in employment among certain working-age adults with disabilities enrolled in the Massachusetts Medicaid program., (Copyright © 2011 Elsevier Inc. All rights reserved.)

Background: Home and community-based services (HCBS) are vital to the health and well-being of persons with disabilities. However, no previous population-based studies have examined the prevalence of unmet needs for HCBS among working-age persons with disabilities. The purpose of this report is to document the prevalence of unmet need for HCBS among a representative sample of working-age persons with disabilities in Massachusetts., Methods: Data from the 2007 Massachusetts Survey of Unmet Needs of Adults with Disabilities were analyzed. HCBS included in-home help, case-management, information, access to medical care, physical and occupational therapy, prescription drugs, meals, assistive technology, home adaptation, transportation, need for assistance with activities of daily living and instrumental activities of daily living (IADL) services., Results: The prevalence of unmet need for HCBS was high, with more than two-thirds of respondents reporting at least 1 unmet need and more than 1 in 4 respondents reporting 4 or more unmet needs. The most prevalent unmet need included the need for information for disability-related services and legal rights, need for primary, specialty, and mental health care, case management services and the unmet need for IADL services. The unmet needs for HCBS were categorized into unmet needs relating to access to information and services and those relating to in-home supports., Conclusions: The study findings support the need to broaden the scope of HCBS for working-age persons with disabilities and to implement community-based programs such as improving access to information for services and benefits and enhancing access to in-home supports., (Copyright © 2011 Elsevier Inc. All rights reserved.)