Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 25
Filtrar
1.
BJOG ; 130(5): 514-521, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36156842

RESUMO

OBJECTIVE: Women who are deaf experience higher rates of reproductive healthcare barriers and adverse birth outcomes compared with their peers who can hear. This study explores the pregnancy experiences of women who are deaf to better understand their barriers to and facilitators of optimal pregnancy-related health care. DESIGN: Qualitative study using thematic analysis. SETTING: Semi-structured, individual, remote or in-person interviews conducted in the USA. SAMPLE: Forty-five women who are deaf and communicate using American Sign Language (ASL) and gave birth in the USA within the past 5 years participated in the interviews. METHODS: Semi-structured interviews explored how mothers who are deaf experienced pregnancy and birth, including access to perinatal information and resources, relationships with healthcare providers, communication access and their involvement with the healthcare system throughout pregnancy. A thematic analysis was conducted. MAIN OUTCOME MEASURES: Barriers and facilitators related to a positive experience of perinatal care access among women who are deaf. RESULTS: Three major themes emerged: (1) communication accessibility; (2) communication satisfaction; and (3) healthcare provider and team support. Common barriers included choosing healthcare providers, inconsistent communication access and difficulty accessing health information. However, when women who are deaf were able to use ASL interpreters, they had more positive pregnancy and birth experiences. Self-advocacy served as a common facilitator for more positive pregnancy and healthcare experiences. CONCLUSIONS: Healthcare providers need to be more aware of the communication and support needs of their patients who are deaf, especially how to communicate effectively. Increased cultural awareness and consistent provision of on-site interpreters can improve pregnancy and birth experiences for women who are deaf.


Assuntos
Acessibilidade aos Serviços de Saúde , Mães , Gravidez , Feminino , Humanos , Pesquisa Qualitativa , Comunicação , Língua de Sinais
2.
J Intellect Dev Disabil ; 48(1): 12-22, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36969147

RESUMO

Background: Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities. Method: We conducted semi-structured interviews and one focus group with US obstetric care clinicians (n=17). We used a content analysis approach to code data and analyse them for larger themes and relationships. Results: The majority of participants were white, non-Hispanic, and female. Participants reported barriers providing care to pregnant women with intellectual and developmental disabilities across individual (e.g., communication challenges), practice (e.g., identification of disability status), and system levels (e.g., lack of clinician training). Conclusions: Clinician training and evidence-based guidelines for perinatal care of women with intellectual and developmental disabilities as well as services and supports during pregnancy are needed.


Assuntos
Deficiência Intelectual , Assistência Perinatal , Criança , Recém-Nascido , Humanos , Feminino , Gravidez , Deficiências do Desenvolvimento/terapia , Resultado da Gravidez , Pesquisa Qualitativa , Grupos Focais , Deficiência Intelectual/terapia
3.
Chaos ; 31(7): 073116, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-34340344

RESUMO

The behavior at bifurcation from global synchronization to partial synchronization in finite networks of coupled oscillators is a complex phenomenon, involving the intricate dynamics of one or more oscillators with the remaining synchronized oscillators. This is not captured well by standard macroscopic model reduction techniques that capture only the collective behavior of synchronized oscillators in the thermodynamic limit. We introduce two mesoscopic model reductions for finite sparse networks of coupled oscillators to quantitatively capture the dynamics close to bifurcation from global to partial synchronization. Our model reduction builds upon the method of collective coordinates. We first show that standard collective coordinate reduction has difficulties capturing this bifurcation. We identify a particular topological structure at bifurcation consisting of a main synchronized cluster, the oscillator that desynchronizes at bifurcation, and an intermediary node connecting them. Utilizing this structure and ensemble averages, we derive an analytic expression for the mismatch between the true bifurcation from global to partial synchronization and its estimate calculated via the collective coordinate approach. This allows to calibrate the standard collective coordinate approach without prior knowledge of which node will desynchronize. We introduce a second mesoscopic reduction, utilizing the same particular topological structure, which allows for a quantitative dynamical description of the phases near bifurcation. The mesoscopic reductions significantly reduce the computational complexity of the collective coordinate approach, reducing from O(N2) to O(1). We perform numerical simulations for Erdos-Rényi networks and for modified Barabási-Albert networks demonstrating remarkable quantitative agreement at and close to bifurcation.

4.
Matern Child Health J ; 20(3): 507-15, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26518009

RESUMO

OBJECTIVE: The objective of this study was to compare the prevalence of select preconception health indicators among women with and without disabilities. METHODS: 2010 Behavioral Risk Factor Surveillance System data were used to estimate the prevalence of health behaviors, health status indicators, and preventive health care among non-pregnant women ages 18-44 years with (N = 8370) and without (N = 48,036) disabilities. Crude percentages were compared with Chi square statistics. Multivariable logistic regressions adjusted for socio-demographic factors. RESULTS: Women with disabilities were more likely than women without disabilities to currently smoke (30.5 vs. 14.5 %, p < 0.0001) and less likely to exercise in the past month (67.1 vs. 79.8 %, p < 0.0001). Heavy drinking was similar in the two groups (4.4 vs. 4.5 %, p = 0.9). Health status indicators were worse among women with disabilities, with 35.0 % reporting fair/poor health and 12.4 % reporting diabetes, compared with 6.7 and 5.6 %, respectively, among women with no disabilities (p < 0.0001 for both). Frequent mental distress, obesity, asthma, and lack of emotional support were also higher among women with disabilities compared with their non-disabled counterparts. Women with disabilities were more likely to receive some types of preventive care, (HIV), but less likely to receive others (recent dental cleaning, routine checkup). Disparities in health behaviors and health status indicators between the two groups remained after adjusting for socio-demographic factors. CONCLUSION: Women with disabilities at reproductive age are more vulnerable to risk factors associated with adverse pregnancy outcomes compared to their counterparts without disabilities. Our findings highlight the need for preconception health care for women with disabilities.


Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Disparidades nos Níveis de Saúde , Indicadores Básicos de Saúde , Cuidado Pré-Concepcional , Resultado da Gravidez/epidemiologia , Adolescente , Adulto , Consumo de Bebidas Alcoólicas/epidemiologia , Sistema de Vigilância de Fator de Risco Comportamental , Feminino , Humanos , Análise Multivariada , Obesidade/epidemiologia , Vigilância da População , Gravidez , Prevalência , Fatores de Risco , Fumar/epidemiologia , Fatores Socioeconômicos , Adulto Jovem
5.
J Trauma Stress ; 27(6): 703-11, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25522731

RESUMO

Despite potential advantages in scalability and efficiency of web-based training for trauma providers, few controlled trials of feasibility and effectiveness of web-based mental health training have been performed. Our study compared web-based training in 3 intervention skills (motivation enhancement [ME], goal setting [GS], behavioral task assignment [BTA]) with web-based training plus telephone consultation, and a no-training control. The primary outcome measures included objective measures of skills acquisition (standardized patient assessments). Results showed significant differences among the training conditions. The overall tests of differences among the groups were statistically significant for ME and BTA skills (p < .001 and p = .005, respectively), but not for GS (p = .245). The web training plus consultation group improved in ME skills by 0.35 units compared to 0.12 units in the web only group (p < .001) and no change in the control group (p = .001). For BTA skills, the web training plus consultation improved by 0.27 units compared to 0.17 units in the web only group (p = .175) and no change in the control group (p = .004). Overall, these findings support the use of web-based dissemination for large-scale training programs for trauma providers in health care delivery systems. Further studies are needed to clarify the specific role of consultation as an adjunct to web-based training.


Assuntos
Terapia Cognitivo-Comportamental/educação , Prática Clínica Baseada em Evidências/educação , Transtornos de Estresse Pós-Traumáticos/terapia , Saúde dos Veteranos/educação , Terapia Cognitivo-Comportamental/métodos , Instrução por Computador/métodos , Educação a Distância/métodos , Educação a Distância/organização & administração , Feminino , Humanos , Masculino , Simulação de Paciente , Avaliação de Programas e Projetos de Saúde , Estados Unidos , Recursos Humanos
6.
Phys Rev E ; 109(2): L022202, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38491677

RESUMO

We determine bifurcations from gradual to explosive synchronization in coupled oscillator networks with higher-order coupling using self-consistency analysis. We obtain analytic bifurcation values for generic symmetric natural frequency distributions. We show that nonsynchronized, drifting, oscillators are non-negligible and play a crucial role in bifurcation. As such, the entire natural frequency distribution must be accounted for, rather than just the shape at the center. We verify our results for Lorentzian- and Gaussian-distributed natural frequencies.

7.
Disabil Health J ; : 101639, 2024 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-38811248

RESUMO

BACKGROUND: Deaf and hard-of-hearing (DHH) people are at higher risk than their non-DHH counterparts of experiencing adverse birth outcomes. There is a lack of research focusing on social, linguistic, and medical factors related to being DHH which may identify groups of DHH people who experience more inequity. OBJECTIVE: Examine difference in prevalence of cesarean and adverse birth outcomes among diverse sub-groups of DHH people. METHODS: We conducted a cross-sectional survey of DHH birthing people in the U.S. who gave birth within the past 10 years. The sample was predominantly white, college educated, and married. We assessed cesarean birth and three adverse birth outcomes: preterm birth, low birthweight, and NICU admission post-delivery. DHH-specific variables were genetic etiology of hearing loss, preferred language (i.e., American Sign Language, English, or bilingual), severity of hearing loss, age of onset of hearing loss, and self-reported quality of perinatal care communication. We estimated prevalence, 95 % confidence intervals, and unadjusted prevalence ratios. RESULTS: Thirty-one percent of our sample reported a cesarean birth. Overall, there were no significant differences in prevalence across the outcome variables with respect to preferred language, genetic etiology, severity, and age of onset. Poorer perinatal care communication quality was associated with higher prevalence of preterm birth (PR = 2.37) and NICU admission (PR = 1.91). CONCLUSIONS: Our study found no evidence supporting differences in obstetric outcomes among DHH birthing people across medical factors related to deafness. Findings support the important role of communication access for DHH people in healthcare environments.

8.
Womens Health Issues ; 33(6): 610-617, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37648627

RESUMO

INTRODUCTION: Deaf and hard of hearing (DHH) women are faced with numerous health inequities, including adverse pregnancy and birth outcomes. These outcomes are likely exacerbated for Black DHH women because of the intersection of disability and race. This study aimed to explore the pregnancy and birth experiences of Black DHH women to identify factors that influence their pregnancy outcomes. METHODS: Semistructured interviews were conducted between 2018 and 2019 with 67 DHH women who gave birth in the past five years. The present study represents a subgroup analysis of eight of the 67 women who self-identified as Black. Interviews were recorded, transcribed, and analyzed for emerging themes. RESULTS: Primary themes centered on unmet needs, barriers, and facilitators. Barriers included limited access to health information owing to communication difficulties and challenges obtaining accommodations. Key facilitators included the availability of sign language interpreters, familial support, and cultural understanding from providers. Participants emphasized these facilitators in their recommendations to providers and DHH women. Findings also underscored the critical role of recognizing cultural identity in perinatal health care delivery. CONCLUSIONS: This study outlines themes that affect pregnancy and birthing experiences among Black DHH women in the United States. Study implications include a call to action for providers to prioritize communication accommodations, accessible information, and compassionate care for all Black DHH women. Furthermore, future work should explore the impact of cultural and racial concordance between patients and their health care providers and staff. Understanding how intersectional identities affect perinatal health care access is crucial for reducing disparities among Black DHH women.


Assuntos
Pessoas com Deficiência Auditiva , Gravidez , Humanos , Estados Unidos , Feminino , Saúde Materna , Acessibilidade aos Serviços de Saúde , Comunicação , Resultado da Gravidez
9.
Patient Educ Couns ; 112: 107743, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37060682

RESUMO

OBJECTIVE: Deaf and hard-of-hearing (DHH) people report ineffective healthcare communication. Limited research has been conducted on healthcare communication during pregnancy. This study's aim was to assess communication accommodations and experiences during pregnancy for DHH people. METHODS: An accessible web-based survey was administered to a non-probability sample of DHH people through national organizations, social media, and snowball sampling. Eligibility criteria included being 21 years or older; given birth in the U.S. within the past 10 years, report hearing loss prior to the most recent birth. Questions focused on healthcare experiences and information access during their last pregnancy. The sample included 583 respondents for the present analysis. We describe the communication accommodations requested and received during pregnancy, segmented by preferred language. RESULTS: Most DHH participants reported communication with prenatal clinicians as "good" or "very good". On-site interpreter services were most commonly requested by American Sign Language (ASL) only and bilingual DHH people. Interpersonal communication modification requests (e.g., speaking louder) were rarely obliged. CONCLUSION: This study is the first national examination of requested and received communication accommodations for DHH patients during the perinatal period. PRACTICE IMPLICATIONS: Healthcare providers should work closely with patients to ensure effective communication access is provided.


Assuntos
Surdez , Perda Auditiva , Pessoas com Deficiência Auditiva , Humanos , Gravidez , Feminino , Comunicação , Acessibilidade aos Serviços de Saúde
10.
Disabil Health J ; 15(4): 101343, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35739053

RESUMO

BACKGROUND: As recent as the mid-twentieth century, eugenics practices on women with intellectual and developmental disabilities were commonplace. Deinstitutionalization has led to an increasing proportion of women with intellectual and developmental disabilities living in the community and becoming pregnant. Previous research has reported barriers to maternal health care (i.e., perceived provider stigma, inadequate communication, stress surrounding child protective services involvement, and financial strain). Research shows that this population is at increased risk of adverse outcomes including preterm delivery, low birth weight babies, and maternal mortality. OBJECTIVE/HYPOTHESIS: This study aimed to explore recommendations from mothers with intellectual and developmental disabilities for other women to potentially improve pregnancy experiences for this population. METHODS: We conducted semi-structured individual interviews among 16 women with intellectual and developmental disabilities. Data were coded using a content analysis process and iteratively analyzed using inductive and deductive techniques to determine emergent themes. RESULTS: Participants offered recommendations for navigating pregnancy to their peers who are pregnant, or thinking about becoming pregnant. Themes included: (1) planning for birth; (2) advocating at the point-of-care; (3) seeking supports and services; (4) interacting with child protective services; (5) communicating with providers; and (6) exhibiting resilience. CONCLUSION: Our study highlights recommendations for improving pregnancy experiences of women with intellectual and developmental disabilities. Informed by the lived pregnancy experiences of our participants, these recommendations can inform clinician training, new guidelines, and services to support and improve pregnancy experiences for women with intellectual and developmental disabilities.

11.
Intellect Dev Disabil ; 60(4): 261-272, 2022 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-35868299

RESUMO

This article explores the role of formal and informal supports for women with intellectual and developmental disabilities (IDD) throughout their pregnancy, childbirth, and postpartum experiences. Data from qualitative interviews with women with IDD (n = 16) were analyzed. Results showed that formal supports aided in planning, transportation, advocacy, and providing emotional support throughout pregnancy. Informal supports helped with errands, comfort, and emotional encouragement. The community surrounding these women facilitated communication with providers, self-empowerment regarding health choices, and increased preparedness for parenthood. Findings indicate the importance of encouraging and sustaining both formal and informal supports during pregnancy, childbirth, and postpartum to improve pregnancy and parenting experiences for women with IDD.


Assuntos
Deficiências do Desenvolvimento , Deficiência Intelectual , Criança , Deficiências do Desenvolvimento/psicologia , Feminino , Humanos , Deficiência Intelectual/psicologia , Poder Familiar , Gravidez
12.
Disabil Health J ; 15(2): 101262, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35031269

RESUMO

BACKGROUND: Women with intellectual and developmental disabilities (IDDs) experience disparities in obstetric care access and quality, in addition to communication gaps with healthcare providers. Many obstetric providers are untrained and uneducated about critical aspects of providing care to persons with IDDs. OBJECTIVE: The study was conducted to describe obstetric clinicians' training experiences related to providing obstetric care to women with IDDs, to assess the perceived need for formalized training, and to identify recommendations for training content. METHODS: This study involved qualitative individual interviews (n = 9) and one focus group (n = 8) with obstetric clinicians who self-reported experience caring for women with IDDs during pregnancy. Descriptive coding and content analysis techniques were used to develop an iterative codebook related to education and training; codes were applied to the data. Coded data were analyzed for larger themes and relationships. RESULTS: Analysis revealed three main themes: 1. Need for obstetric training and education: No participant reported receiving any training in caring for pregnant women with IDDs. Participants expressed a need for formal education. 2. Recommendations for formal training: Participants noted the need for training during residency and beyond, and all healthcare staff members should be included in training. 3. Training outcomes should increase knowledge, enhance attitudes, and develop practical skills related to care for pregnant women with IDDs. CONCLUSION: Results indicate a need for systematic training efforts regarding obstetric care for women with IDDs. Improved training and education may decrease health inequities and improve the quality of care, and thus pregnancy outcomes, for women with IDDs. LEVEL OF EVIDENCE: VI.


Assuntos
Pessoas com Deficiência , Gestantes , Criança , Deficiências do Desenvolvimento , Feminino , Pessoal de Saúde , Humanos , Gravidez , Resultado da Gravidez , Pesquisa Qualitativa
13.
Health Lit Res Pract ; 6(4): e310-e315, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-36475981

RESUMO

People who are deaf and hard-of-hearing (DHH) struggle with information marginalization and limited health literacy, challenging their ability to access information on preventing coronavirus disease 2019 (COVID-19). This study assessed the relationship between language preference, health literacy, and COVID-19 information barriers among parents who are DHH in the United States. Data were drawn from a larger study focused on individuals who are DHH who had given birth in the past 10 years. Respondents completed a web-based survey between March 2020 and July 2021. We segmented respondents by language preference [i.e., American Sign Language (ASL), English, or bilingual ASL/English] and used logistic regression models to test the hypothesis that language preference and health literacy were both associated with COVID-19 information marginalization. Of the total sample (N = 417), approximately 17% had limited health literacy, and 22% reported experiencing difficulty accessing information about COVID-19. In adjusted analyses, respondents with limited health literacy ([adjusted odds ratio] aOR = 2.245) and Hispanic ethnicity (aOR = 2.149) had higher risk of reporting information access barriers. There was no association between language preference and reporting COVID-19 information barriers. However, individuals who are DHH with limited health literacy were at higher risk of experiencing information marginalization during the ongoing COVID-19 pandemic, highlighting the need for tailored information based on access needs. [HLRP: Health Literacy Research and Practice. 2022;6(4):e310-e315.].


Assuntos
COVID-19 , Letramento em Saúde , Pessoas com Deficiência Auditiva , Humanos , Pandemias/prevenção & controle , Acesso à Informação
14.
Health Soc Care Community ; 27(4): 889-898, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30556199

RESUMO

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.


Assuntos
Pessoas com Deficiência , Mães , Poder Familiar , Adulto , Pré-Escolar , Feminino , Humanos , Lactente , Entrevistas como Assunto , Estudos Prospectivos , Pesquisa Qualitativa , Adulto Jovem
15.
Disabil Health J ; 11(1): 8-13, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-28784583

RESUMO

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.


Assuntos
Atitude do Pessoal de Saúde , Pessoas com Deficiência , Obstetrícia/educação , Assistência Perinatal , Complicações na Gravidez , Qualidade da Assistência à Saúde , Especialização , Adulto , Escolha da Profissão , Educação Médica , Feminino , Humanos , Satisfação no Emprego , Enfermeiros Obstétricos , Gravidez , Pesquisa Qualitativa
16.
J Hum Lact ; 34(2): 253-261, 2018 May.
Artigo em Inglês | MEDLINE | ID: mdl-29166569

RESUMO

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.


Assuntos
Aleitamento Materno/psicologia , Pessoas com Deficiência/psicologia , Mães/psicologia , Adulto , Aleitamento Materno/métodos , Feminino , Humanos , Entrevistas como Assunto/métodos , Pesquisa Qualitativa , Apoio Social , Estados Unidos
17.
Womens Health Issues ; 27(3): 345-350, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28215842

RESUMO

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.


Assuntos
Atitude , Pessoas com Deficiência , Família/psicologia , Hostilidade , Preconceito , Apoio Social , Adulto , Feminino , Humanos , Relações Interpessoais , Masculino , Mães , Gravidez , Estereotipagem
18.
Disabil Health J ; 10(3): 440-444, 2017 07.
Artigo em Inglês | MEDLINE | ID: mdl-28428112

RESUMO

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.


Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Dor do Parto/terapia , Trabalho de Parto , Manejo da Dor/métodos , Parto , Satisfação do Paciente/estatística & dados numéricos , Adulto , Feminino , Humanos , Entrevistas como Assunto , Gravidez , Estados Unidos , Adulto Jovem
19.
Disabil Health J ; 10(3): 445-450, 2017 07.
Artigo em Inglês | MEDLINE | ID: mdl-28089188

RESUMO

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.


Assuntos
Atitude do Pessoal de Saúde , Pessoas com Deficiência , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/estatística & dados numéricos , Serviços de Saúde Materna/estatística & dados numéricos , Adulto , Feminino , Humanos , Entrevistas como Assunto , Gravidez , Estados Unidos
20.
J Womens Health (Larchmt) ; 26(12): 1356-1363, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-28832265

RESUMO

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.


Assuntos
Pessoas com Deficiência , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Satisfação Pessoal , Gestantes/psicologia , Cuidado Pré-Natal/métodos , Adulto , Pessoas com Deficiência/psicologia , Etnicidade , Feminino , Humanos , Gravidez , Pesquisa Qualitativa , Qualidade da Assistência à Saúde , Saúde Reprodutiva , Inquéritos e Questionários
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA