RESUMEN
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 (HRâ¯=â¯1.3, 95% CI 1.2-1.4) and preterm infants of women with circulatory diagnoses (HRâ¯=â¯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.
Asunto(s)
Personas con Discapacidad , Servicio de Urgencia en Hospital , Aceptación de la Atención de Salud , Complicaciones del Embarazo , Adolescente , Adulto , Estudios de Cohortes , Femenino , Humanos , Lactante , Recién Nacido , Recien Nacido Prematuro , Clasificación Internacional de Enfermedades , Massachusetts , Embarazo , Resultado del Embarazo , Modelos de Riesgos Proporcionales , Estudios Retrospectivos , Riesgo , Adulto JovenRESUMEN
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.
Asunto(s)
Personas con Discapacidad , Madres , Responsabilidad Parental , Adulto , Preescolar , Femenino , Humanos , Lactante , Entrevistas como Asunto , Estudios Prospectivos , Investigación Cualitativa , Adulto JovenRESUMEN
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.
Asunto(s)
Lactancia Materna/psicología , Personas con Discapacidad/psicología , Madres/psicología , Adulto , Lactancia Materna/métodos , Femenino , Humanos , Entrevistas como Asunto/métodos , Investigación Cualitativa , Apoyo Social , Estados UnidosRESUMEN
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.
Asunto(s)
Actitud , Personas con Discapacidad , Familia/psicología , Hostilidad , Prejuicio , Apoyo Social , Adulto , Femenino , Humanos , Relaciones Interpersonales , Masculino , Madres , Embarazo , EstereotipoRESUMEN
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.
Asunto(s)
Actitud del Personal de Salud , Personas con Discapacidad , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Disparidades en Atención de Salud/estadística & datos numéricos , Servicios de Salud Materna/estadística & datos numéricos , Adulto , Femenino , Humanos , Entrevistas como Asunto , Embarazo , Estados UnidosRESUMEN
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.
Asunto(s)
Actitud , Personas con Discapacidad , Accesibilidad a los Servicios de Salud , Necesidades y Demandas de Servicios de Salud , Servicios de Salud Materna , Acceso a la Información , Adulto , Actitud del Personal de Salud , Competencia Clínica , Equipos y Suministros , Femenino , Instituciones de Salud , Humanos , Embarazo , Investigación Cualitativa , Confianza , Estados Unidos , Adulto JovenRESUMEN
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.
Asunto(s)
Personas con Discapacidad/estadística & datos numéricos , Conductas Relacionadas con la Salud , Estado de Salud , Complicaciones del Embarazo/epidemiología , Atención Prenatal/estadística & datos numéricos , Adulto , Personas con Discapacidad/psicología , Femenino , Humanos , Recién Nacido de Bajo Peso , Acontecimientos que Cambian la Vida , Embarazo , Complicaciones del Embarazo/psicología , Resultado del Embarazo , Nacimiento Prematuro/epidemiología , Rhode Island , Medición de Riesgo , Asunción de Riesgos , Factores Socioeconómicos , Estrés Psicológico/epidemiologíaRESUMEN
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.
Asunto(s)
Personas con Discapacidad , Disparidades en el Estado de Salud , Disparidades en Atención de Salud , Femenino , Humanos , EmbarazoRESUMEN
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.
Asunto(s)
Depresión Posparto/epidemiología , Depresión Posparto/terapia , Personas con Discapacidad/estadística & datos numéricos , Bienestar Materno , Adulto , Distribución por Edad , Estudios de Casos y Controles , Intervalos de Confianza , Bases de Datos Factuales , Depresión Posparto/diagnóstico , Personas con Discapacidad/psicología , Femenino , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Humanos , Recién Nacido , Servicios de Salud Materna/estadística & datos numéricos , Paridad , Valor Predictivo de las Pruebas , Embarazo , Prevalencia , Valores de Referencia , Rhode Island , Factores de Riesgo , Índice de Severidad de la Enfermedad , Adulto JovenRESUMEN
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.
Asunto(s)
Competencia Cultural , Curriculum , Atención a la Salud , Personas con Discapacidad , Empleos en Salud/educación , Humanos , EstudiantesRESUMEN
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.
Asunto(s)
Competencia Clínica , Curriculum , Personas con Discapacidad , Educación Continua , Atención al Paciente , Participación del Paciente , Médicos , Empatía , Disparidades en el Estado de Salud , Disparidades en Atención de Salud , Humanos , Atención Dirigida al Paciente , Percepción , Calidad de Vida , Estados UnidosRESUMEN
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.
Asunto(s)
Servicios de Salud Comunitaria/estadística & datos numéricos , Personas con Discapacidad/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Acceso a la Información , Adolescente , Adulto , Femenino , Encuestas de Atención de la Salud , Humanos , Masculino , Massachusetts , Persona de Mediana Edad , Adulto JovenRESUMEN
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 individual's 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 today's 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.
Asunto(s)
Personas con Discapacidad , Educación Médica , Actividades Cotidianas , Personas con Discapacidad/legislación & jurisprudencia , Disparidades en Atención de Salud , Humanos , Estados UnidosRESUMEN
Standardized patients (SPs), now a mainstay of the undergraduate medical education experience, are beginning to play larger roles in helping students build competencies to better serve patients who have disabilities, in educating students about the lived experiences of persons with disabilities, and in testing students' understanding of disability-related issues. In this article, the authors discuss several U.S. training programs that involve SPs who have disabilities or SPs who do not have disabilities but who portray patients who do. The authors review the goals of each program (e.g., to provide students with opportunities to gain experience with patients with disabilities), describe their commonalities (enhancing students' interview skills) and differences (some programs are educational; some are evaluative), and summarize the evaluative data of each. The authors also explore the benefits and challenges of working with SPs with disabilities and of working with SPs without disabilities. Finally, they consider the practical issues (e.g., recruiting SPs) of developing and implementing such programs.
Asunto(s)
Personas con Discapacidad , Educación de Pregrado en Medicina/métodos , Simulación de Paciente , Aprendizaje Basado en Problemas/métodos , Competencia Clínica , Humanos , Relaciones Médico-Paciente , Evaluación de Programas y Proyectos de Salud , Facultades de Medicina , Estudiantes de Medicina , Estados UnidosRESUMEN
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.