Linda M. Long-Bellil

Desired educational outcomes of disability-related training for the generalist physician: knowledge, attitudes, and skills.

The problems adults with disabilities face obtaining quality primary care services are persistent and undermine national efforts to improve the health status of this group. Efforts to address this issue by providing disability-related training to physicians are hampered by limited information about what generalist physicians need to know to care for patients with disabilities. The authors consider the desired outcomes of disability-related training for generalists by exploring the contributions of the domains of knowledge, attitudes, and skills to patient-directed behavior and summarizing the empirical data.Because disability reflects a complex interplay among individual, interpersonal, institutional, community, and societal factors, generalist physicians can promote and protect the health of adults with disabilities by interventions at multiple levels. Thus, the authors use the social-ecological framework, an approach to health promotion that recognizes the complex relationships between individuals and their environments, to delineate the recommended knowledge, attitudes, and skills in the context of primary care. The importance of role models who demonstrate the three domains, the interactions among them, and issues in evaluation are also discussed. This clear delineation of the recommended educational outcomes of disability-related training in terms of knowledge, attitudes, and skills will support efforts to better prepare generalist physicians-in training and in practice-to care for adults with disabilities and to evaluate these training strategies.

Maternal characteristics, pregnancy complications and adverse birth outcomes among women with disabilities

Objectives:The objective of this study is to describe the maternal characteristics, pregnancy complications, and birth outcomes among a representative sample of Rhode Island women with disabilities who recently gave birth. Methods:Data from the 2002–2011 Rhode Island Pregnancy Risk Assessment Monitoring System survey were analyzed. Results:Approximately 7% of women in Rhode Island reported a disability. Women with disabilities reported significant disparities in their health care utilization, health behaviors, and health status before and during pregnancy and during the postpartum period. Compared with nondisabled women, they were significantly more likely to report stressful life events and medical complications during their most recent pregnancy, were less likely to receive prenatal care in the first trimester, and more likely to have preterm births (13.4%; 95% CI, 11.6–15.6 compared with 8.9%; 95% CI, 8.5–9.3 for women without disabilities) and low–birth-weight babies (10.3%; 95% CI, 9.4–11.2 compared with 6.8%; 95% CI, 6.8–6.9). There was no difference in the rates of cesarean section between women with and without disabilities. Conclusions:These findings support the need for clinicians providing care to pregnant women with disabilities to be aware of the increased risk for medical problems during pregnancy and factors that increase the risk for poor infant outcomes.

A perinatal health framework for women with physical disabilities

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 womens 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.

Unmet needs for home and community-based services among persons with disabilities in Massachusetts.

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.

Commentary: defining disability in health care education.

According to the 2008 American Community Survey, about 12% of the population of the United States is living with one or more disabling conditions. These conditions impact lives in a variety of ways, some with more or less direct impact on an individuals health and access to health care services. Although it has been 20 years since the passage of the Americans with Disabilities Act, people with disabilities still experience health disparities and a lack of access to the appropriate care. This commentary is part of a collection of articles that describe various aspects of incorporating content into the medical school curriculum to enhance the preparation of todays medical students to meet the needs of people with disabilities. The authors briefly describe the scope of the problem and define the population of people with disabilities that constitutes the focus of the work described in the other articles in this collection.

Experiences and unmet needs of women with physical disabilities for pain relief during labor and delivery

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 womans care.

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 Impact of Physical Disability on Pregnancy and Childbirth

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 womens 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.