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1.
J Thromb Haemost ; 21(7): 1882-1890, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37031753

RESUMO

BACKGROUND: Pregnancy and the postpartum period are a high-risk time for venous thromboembolism (VTE). Decreased mobility is also a major risk factor. However, the risk of peripregnancy VTE among individuals with physical disabilities is unknown. OBJECTIVES: To compare the risk of peripregnancy VTE between people with a physical disability and those without a physical disability. METHODS: This population-based cohort study comprised all births in Ontario, Canada, from 2007 to 2018. Physical disability was defined as a condition diagnosed before conception that was likely to result in restricted mobility. Modified Poisson regression was used to compare the risk of VTE during pregnancy and up to 6 weeks postpartum between people with a physical disability and those without a physical disability. Adjusted relative risks (aRRs) were calculated, controlling for demographics, history of VTE, thrombophilia, and other comorbidities. An additional analysis was used to evaluate the risk of peripregnancy VTE among people with physical disabilities who used a mobility aid. RESULTS: Of 1 220 822 eligible people, 13 791 (1.1%) had a physical disability. VTE occurred during pregnancy or up to 6 weeks of the postpartum period in 0.85% of the individuals with a physical disability and 0.47% of those without a physical disability (aRR, 1.52; 95% CI, 1.26-1.83). The rate of VTE was notably higher in those with a physical disability requiring a mobility aid (3.0%), generating an aRR of 3.05 (95% CI, 1.45-6.41), than in those without a physical disability. CONCLUSION: Pregnant people with a physical disability, especially those using a mobility aid, are at an increased risk of VTE. Anticoagulant prophylaxis could be considered in this group, especially in the presence of additional risk factors.


Assuntos
Tromboembolia Venosa , Gravidez , Feminino , Humanos , Tromboembolia Venosa/diagnóstico , Tromboembolia Venosa/epidemiologia , Tromboembolia Venosa/etiologia , Estudos de Coortes , Período Pós-Parto , Fatores de Risco , Ontário/epidemiologia
2.
J Adv Nurs ; 79(9): 3324-3336, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36932042

RESUMO

AIM: To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives. DESIGN: A qualitative study with semi-structured interviews. METHODS: Between July 2019 and February 2020, in-person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth. Thematic analysis was used identify common themes. RESULTS: We identified three overall themes concerning participants' postpartum care experiences and the different types of formal services received in and out of hospital: (1) lack of adequate care, (2) lack of provider awareness of disability and disability accommodations, and (3) fear of judgement, discrimination, and intrusive surveillance. The identified themes were applicable across disability groups. However, most comments on disability accommodations came from participants with physical or sensory disabilities, while participants with intellectual/developmental disabilities most commonly reported concerns about lack of adequate care and fear of judgement, discrimination, and intrusive surveillance. CONCLUSION: Findings indicate that postpartum care often fails people with disabilities. This could contribute to negative health consequences for them and their newborns. IMPACT: Birthing people with disabilities need multidisciplinary, proactive, and strengths-based postpartum care to mitigate risk for health complications. Further, disability-related training and guidelines for health and social service providers is required. REPORTING METHOD: Consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Our research team included two peer researchers with physical disabilities who served as co-interviewers and participated in data analysis, contributing their lived experience of disability and interactions with the health care system. All stages of the study were also informed by feedback from the study's Advisory Committee, which comprised women with disabilities (many of whom are parents), disability organization staff, clinicians, and policy representatives.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Recém-Nascido , Humanos , Feminino , Atenção à Saúde , Período Pós-Parto , Ontário , Pesquisa Qualitativa
3.
J Obstet Gynecol Neonatal Nurs ; 52(3): 235-247, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36940781

RESUMO

OBJECTIVE: To explore the care experiences of childbearing people with physical, sensory, and/or intellectual/developmental disabilities during pregnancy. DESIGN: Descriptive qualitative. SETTING: Ontario, Canada, where physician and midwifery care during pregnancy are provided at no direct cost to residents. PARTICIPANTS: Thirty-one people with physical, sensory, and/or intellectual/developmental disabilities (who self-identified as cisgender women [n = 29] and trans or nonbinary persons [n = 2]) who gave birth in the last 5 years. METHODS: We recruited childbearing people with disabilities through disability and parenting organizations, social media, and our team's networks. Using a semistructured guide, we conducted in-person and virtual (e.g., telephone or Zoom) interviews with childbearing people with disabilities in 2019 to 2020. We asked participants about the services they accessed during pregnancy and if services met their needs. We used a reflexive thematic analysis approach to analyze interview data. RESULTS: Across disability groups, we identified four common themes: Unmet Accommodation Needs, Lack of Coordinated Care, Ableism, and Advocacy as a Critical Resource. We found that these experiences manifested in unique ways based on disability type. CONCLUSION: Our findings suggest the need for accessible, coordinated, and respectful prenatal care for people with disabilities, with the requirements of such care depending on the needs of the individual person with a disability. Nurses can play a key role in identifying the needs and supporting people with disabilities during pregnancy. Education and training for nurses, midwives, obstetricians, and other prenatal care providers should focus on disability-related knowledge and respectful prenatal care.


Assuntos
Pessoas com Deficiência , Tocologia , Gravidez , Feminino , Humanos , Cuidado Pré-Natal , Ontário , Parto , Pesquisa Qualitativa
4.
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
5.
Lancet Public Health ; 8(1): e47-e56, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36603911

RESUMO

BACKGROUND: Breastfeeding provides infants with nutrients required for optimal growth and development. We aimed to examine breastfeeding practices and supports that promote exclusive breastfeeding during the birth hospital stay among birthing parents with physical disabilities, sensory disabilities, intellectual or developmental disabilities, and multiple disabilities compared with those without a disability. METHODS: This population-based cohort study was done in Ontario, Canada. We accessed and analysed health administrative data from ICES and the Better Outcomes Registry & Network. We included all birthing parents aged 15-49 years who had a singleton livebirth between April 1, 2012, and March 31, 2018. The study outcomes were breastfeeding practices and supports that promoted exclusive breastfeeding during the birth hospital stay, conceptualised based on WHO-UNICEF Baby Friendly Hospital Initiative guidelines. Individuals with a physical disability, sensory disability, intellectual or developmental disability, or two or more (multiple) disabilities, identified using diagnostic algorithms, were compared with individuals without disabilities on the opportunity to initiate breastfeeding, in-hospital breastfeeding, exclusive breastfeeding at hospital discharge, skin-to-skin contact, and provision of breastfeeding assistance. Relative risks (RRs) were estimated using modified Poisson regression. FINDINGS: Our cohort included 634 111 birthing parents, of whom 54 476 (8·6%) had a physical disability, 19 227 (3·0%) had a sensory disability, 1048 (0·2%) had an intellectual or developmental disability, 4050 (0·6%) had multiple disabilities, and 555 310 (87·6%) had no disability. Individuals with intellectual or developmental disabilities were less likely than those without a disability to have an opportunity to initiate breastfeeding (adjusted RR 0·82, 95% CI 0·76-0·88), any in-hospital breastfeeding (0·85, 0·81-0·88), exclusive breastfeeding at hospital discharge (0·73, 0·67-0·79), skin-to-skin contact (0·90, 0·87-0·94), and breastfeeding assistance (0·85, 0·79-0·91). Those with multiple disabilities were less likely to have an opportunity to initiate breastfeeding (0·93, 0·91-0·96), any in-hospital breastfeeding (0·93, 0·92-0·95), exclusive breastfeeding at hospital discharge (0·90, 0·87-0·93), skin-to-skin contact (0·93, 0·91-0·95), and breastfeeding assistance (0·95, 0·92-0·98). Differences for individuals with a physical or sensory disability only were mostly non-significant. INTERPRETATION: Our findings show disparities in breastfeeding outcomes between individuals without a disability and individuals with intellectual or developmental disabilities or multiple disabilities, but not individuals with physical or sensory disabilities. There is a need for further research on the factors that contribute to breastfeeding intentions, practices, and supports in people with intellectual or developmental disabilities and multiple disabilities, especially factors that affect breastfeeding decision making. FUNDING: National Institutes of Health and the Canada Research Chairs Program.


Assuntos
Aleitamento Materno , Pessoas com Deficiência , Estados Unidos , Lactente , Feminino , Humanos , Ontário/epidemiologia , Estudos de Coortes , Hospitais
6.
Obstet Gynecol ; 140(5): 797-805, 2022 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-36201763

RESUMO

OBJECTIVE: To compare the risk of interpersonal violence experienced by pregnant and postpartum individuals with physical disabilities, sensory disabilities, or intellectual or developmental disabilities with those without disabilities, and to examine whether a prepregnancy history of interpersonal violence puts individuals with disabilities, at excess risk of interpersonal violence in the perinatal period. METHOD: This population-based study included all individuals aged 15-49 years with births in Ontario, Canada, from 2004 to 2019. Individuals with physical (n=147,414), sensory (n=47,459), intellectual or developmental (n=2,557), or multiple disabilities (n=9,598) were compared with 1,594,441 individuals without disabilities. The outcome was any emergency department visit, hospital admission, or death related to physical, sexual, or psychological violence between fertilization and 365 days postpartum. Relative risks (RRs) were adjusted for baseline social and health characteristics. Relative excess risk due to interaction (RERI) was estimated from the joint effects of disability and prepregnancy violence history; RERI>0 indicated positive interaction. RESULTS: Individuals with physical (0.8%), sensory (0.7%), intellectual or developmental (5.3%), or multiple disabilities (1.8%) were more likely than those without disabilities (0.5%) to experience perinatal interpersonal violence. The adjusted RR was 1.40 (95% CI 1.31-1.50) in those with physical disabilities, 2.39 (95% CI 1.98-2.88) in those with intellectual or developmental disabilities, and 1.96 (95% CI 1.66-2.30) in those with multiple disabilities. Having both a disability and any violence history produced a positive interaction for perinatal interpersonal violence (adjusted RERI 0.87; 95% CI 0.47-1.29). CONCLUSION: The perinatal period is a time of relative high risk for interpersonal violence among individuals with pre-existing disabilities, especially those with a history of interpersonal violence.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Complicações na Gravidez , Humanos , Gravidez , Feminino , Criança , Violência , Ontário/epidemiologia , Deficiências do Desenvolvimento/epidemiologia
7.
Pediatrics ; 150(3)2022 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-35934737

RESUMO

OBJECTIVES: To assess the risk of neonatal complications among women with a disability. METHODS: This population-based cohort study comprised all hospital singleton livebirths in Ontario, Canada from 2003 to 2018. Newborns of women with a physical (N = 144 187), sensory (N = 44 988), intellectual or developmental (N = 2207), or ≥2 disabilities (N = 8823) were each compared with 1 593 354 newborns of women without a disability. Outcomes were preterm birth <37 and <34 weeks, small for gestational age birth weight (SGA), large for gestational age birth weight, neonatal morbidity, and mortality, neonatal abstinence syndrome (NAS), and NICU admission. Relative risks were adjusted for social, health, and health care characteristics. RESULTS: Risks for neonatal complications were elevated among newborns of women with disabilities compared with those without disabilities. Adjusted relative risks were especially high for newborns of women with an intellectual or developmental disability, including preterm birth <37 weeks (1.37, 95% confidence interval 1.19-1.58), SGA (1.37, 1.24-1.59), neonatal morbidity (1.42, 1.27-1.60), NAS (1.53, 1.12-2.08), and NICU admission (1.53, 1.40-1.67). The same was seen for newborns of women with ≥2 disabilities, including preterm birth <37 weeks (1.48, 1.39-1.59), SGA (1.13, 1.07-1.20), neonatal morbidity (1.28, 1.20-1.36), NAS (1.87, 1.57-2.23), and NICU admission (1.35, 1.29-1.42). CONCLUSIONS: There is a mild to moderate elevated risk for complications among newborns of women with disabilities. These women may need adapted and enhanced preconception and prenatal care, and their newborns may require extra support after birth.


Assuntos
Pessoas com Deficiência , Síndrome de Abstinência Neonatal , Nascimento Prematuro , Peso ao Nascer , Estudos de Coortes , Feminino , Humanos , Recém-Nascido , Mães , Ontário/epidemiologia , Gravidez
8.
Soc Psychiatry Psychiatr Epidemiol ; 57(11): 2217-2228, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-35939075

RESUMO

PURPOSE: To examine the risk of perinatal mental illness, including new-onset disorders and recurrent or ongoing use of mental health care, comparing women with physical, sensory, intellectual/developmental, and multiple disabilities to those without a disability. METHODS: From all women aged 15-49 years with a singleton birth in Ontario, Canada (2003-2018), those with physical (n = 144,972), sensory (n = 45,249), intellectual/developmental (n = 2,227), and ≥ 2 of these disabilities ("multiple disabilities"; n = 8,883), were compared to 1,601,363 without a disability on risk of healthcare system contact for mental illness from conception to 365 days postpartum. The cohort was stratified into: (1) no pre-pregnancy mental illness (to identify new-onset illness), (2) distal mental illness (> 2 years pre-pregnancy, to identify recurrent illness), and (3) recent mental illness (0-2 years pre-pregnancy, to identify ongoing contact). Modified Poisson regression generated relative risks (aRR), adjusted for age, parity, income quintile, and rural residence. RESULTS: About 14.7, 26.5, and 56.6% of women with no disabilities had new-onset, recurrent, and ongoing contact for mental illness, respectively, perinatally. Risks were elevated across disability groups for new-onset (physical: aRR 1.18, 95% CI 1.16-1.20; sensory: 1.11, 1.08-1.15; intellectual/developmental: 1.38, 1.17-1.62; multiple: 1.24, 1.15-1.33), recurrent (physical: 1.10, 1.08-1.12; sensory 1.06, 1.02-1.09; intellectual/developmental: 1.24, 1.11-1.37; multiple: 1.16, 1.09-1.23), and ongoing contact (physical: 1.09, 1.08-1.10; sensory: 1.08, 1.06-1.10; intellectual/developmental: 1.31, 1.26-1.37; multiple: 1.20, 1.16-1.23). CONCLUSION: The heightened use of new, recurrent, and ongoing mental health care across disability groups in the perinatal period suggests that adapted screening and intervention approaches are critical to optimize perinatal mental health in this population.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Complicações na Gravidez , Gravidez , Criança , Feminino , Humanos , Resultado da Gravidez/epidemiologia , Estudos de Coortes , Deficiências do Desenvolvimento/epidemiologia , Complicações na Gravidez/epidemiologia , Deficiência Intelectual/epidemiologia , Ontário/epidemiologia
9.
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
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.
Am J Obstet Gynecol MFM ; 4(3): 100607, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35248782

RESUMO

BACKGROUND: Disability is common in reproductive-aged women, and as many as 1 in 8 pregnancies occur in women with a disability. Women with disabilities experience significant social and health disparities, and are at greater risk than their nondisabled counterparts for perinatal complications. Yet, few studies have examined their postpartum acute care use. OBJECTIVE: To examine risks of postpartum emergency department visits and hospital admissions among women with and without physical, sensory, and intellectual/developmental disabilities. STUDY DESIGN: In this population-based study in Ontario, Canada, women with a singleton obstetrical delivery from 2003 to 2019 were classified into those with physical (n=155,500), sensory (n=49,338), intellectual/developmental (n=2650), and multiple disabilities (≥2 disabilities; n=9904), and women without disabilities (n=1,701,574). Primary outcomes were emergency department visits and hospital admissions 0 to 365 days after index delivery hospital discharge. Secondary outcomes were emergency department visits and hospital admissions by primary diagnosis (medical, psychiatric) and by timing (0-7, 8-42, 43-365 days postpartum). Adjusted relative risks comparing each disability group to those without disabilities were adjusted for age; parity; income quintile; rurality; immigrant/refugee status; prepregnancy chronic medical conditions, mental illness, and substance use disorders; and prenatal care provider type. RESULTS: Any postpartum emergency department visit occurred in 23.5% of women without a disability, with risks elevated in women with physical (32.9%; adjusted relative risk, 1.27; 95% confidence interval, 1.26-1.28), sensory (30.0%; adjusted relative risk, 1.16; 95% confidence interval, 1.15-1.18), intellectual/developmental (48.8%; adjusted relative risk, 1.38; 95% confidence interval, 1.33-1.44), and multiple disabilities (42.0%; adjusted relative risk, 1.44; 95% confidence interval, 1.41-1.48) compared with women without disabilities. Similarly, any postpartum hospital admission occurred in 3.0% of women without a disability, with elevated risks in women with physical (4.8%; adjusted relative risk, 1.37; 95% confidence interval, 1.34-1.40), sensory (4.0%; adjusted relative risk, 1.19; 95% confidence interval, 1.14-1.24), intellectual/developmental (9.6%; adjusted relative risk, 1.96; 95% confidence interval, 1.73-2.21), and multiple disabilities (7.3%; adjusted relative risk, 1.77; 95% confidence interval, 1.64-1.90). Results were consistent by primary diagnosis and timing in the postpartum period. CONCLUSION: Women with disabilities have elevated risk of emergency department visits and hospital admissions in the postpartum period, indicating greater postpartum morbidity, which requires attention through enhanced and extended follow-up across the postpartum period.


Assuntos
Pessoas com Deficiência , Complicações na Gravidez , Adulto , Serviço Hospitalar de Emergência , Feminino , Humanos , Masculino , Ontário/epidemiologia , Período Pós-Parto , Gravidez , Complicações na Gravidez/diagnóstico , Complicações na Gravidez/epidemiologia , Complicações na Gravidez/terapia
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.
Intellect Dev Disabil ; 59(1): 84-94, 2021 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-33543279

RESUMO

Barriers to health care access can greatly affect one's health status. Research shows that U.S. adults with intellectual and developmental disabilities (IDD) have poor health and face barriers such as long waits for appointments. However, whether barriers differ by race and ethnicity has not been examined. We conducted a secondary data analysis using the 2002-2011 Medical Expenditure Panel Survey dataset, and compared perceived barriers of community-living U.S. adults with IDD in three racial and ethnic groups (White, Black, and Latinx). Specifically, we examined the top reasons for not having usual source of care, delaying or foregoing medical care. For Black and Latinx adults with IDD, the most-mentioned reasons for not having usual source of care, delaying or foregoing medical care were "don't like/don't trust doctors," "don't use doctors," and "don't know where to get care." In comparison, the White adults with IDD group's biggest perceived barriers were location and insurance related. All groups cited that being unable to afford care was a top reason for delaying or foregoing care. Policies/interventions to improve health care access in racial/ethnic minorities with IDD must first address the topic of developing trust between patients and the health professions. Insurance and the rising costs of care are also key areas that need attention.


Assuntos
Etnicidade , Deficiência Intelectual , Adulto , Criança , Deficiências do Desenvolvimento/terapia , Gastos em Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Deficiência Intelectual/terapia
14.
JAMA Netw Open ; 4(2): e2034993, 2021 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-33555330

RESUMO

Importance: Severe maternal morbidity and mortality are important indicators of maternal health. Pregnancy rates are increasing in women with disabilities, but their risk of severe maternal morbidity and mortality is unknown, despite their significant social and health disparities. Objective: To determine the risk of severe maternal morbidity or mortality among women with a physical, sensory, or intellectual/developmental disability compared with women without disabilities. Design, Setting, and Participants: This population-based cohort study used linked health administrative data in Ontario, Canada, from 2003 to 2018. The cohort included all singleton births to women with preexisting physical, sensory, and intellectual/developmental disabilities as well as with 2 disabilities or more compared with women without a disability. Data analysis was conducted from September 2019 to September 2020. Exposures: Disabilities were identified with published algorithms applied to diagnoses in 2 physician visits or more or at least 1 emergency department visit or hospitalization. Main Outcomes and Measures: Severe maternal morbidity (a validated composite of 40 diagnostic and procedural indicators) or all-cause maternal mortality, arising between conception and 42 days post partum. Relative risks were adjusted for maternal age, parity, income quintile, rurality, chronic medical conditions, mental illness, and substance use disorders. Results: The cohort comprised women with physical disabilities (144 972 women; mean [SD] age, 29.8 [5.6] years), sensory disabilities (45 259 women; mean [SD] age, 29.1 [6.0] years), intellectual/developmental disabilities (2227 women; mean [SD] age, 26.1 [6.4] years), and 2 or more disabilities (8883 women; mean [SD] age, 29.1 [6.1] years), and those without disabilities (1 601 363 women; mean [SD] age, 29.6 [5.4] years). The rate of severe maternal morbidity or death was 1.7% (27 242 women) in women without a disability. Compared with these women, the risk of severe maternal morbidity or death was higher in women with a physical disability (adjusted relative risk [aRR], 1.29; 95% CI, 1.25-1.34), a sensory disability (aRR, 1.14; 95% CI, 1.06-1.21), an intellectual/developmental disability (aRR, 1.57; 95% CI, 1.23-2.01), and 2 or more disabilities (aRR, 1.74; 95% CI, 1.55-1.95). Similar aRRs were observed for severe maternal morbidity or death arising in pregnancy, from birth to 42 days post partum, and from 43 to 365 days post partum. Women with disabilities were more likely than those without disabilities to experience multiple severe maternal morbidity indicators. The most prevalent indicators in all groups were intensive care unit admission, severe postpartum hemorrhage, puerperal sepsis, and severe preeclampsia. Conclusions and Relevance: In this study, women with a preexisting disability were more likely to experience severe maternal morbidity or mortality. Preconception and perinatal care provisions should be considered among women with a disability to mitigate the risk of these rare but serious outcomes.


Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Mortalidade Materna , Complicações na Gravidez/epidemiologia , Adulto , Estudos de Casos e Controles , Anormalidades Congênitas/epidemiologia , Deficiências do Desenvolvimento/epidemiologia , Feminino , Perda Auditiva/epidemiologia , Humanos , Deficiência Intelectual/epidemiologia , Doenças Musculoesqueléticas/epidemiologia , Doenças do Sistema Nervoso/epidemiologia , Ontário/epidemiologia , Gravidez , Transtornos Puerperais/epidemiologia , Risco , Índice de Gravidade de Doença , Transtornos da Visão/epidemiologia , Adulto Jovem
15.
Autism ; 25(4): 1114-1124, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33467914

RESUMO

LAY ABSTRACT: While an increasing number of girls and women are being identified with autism, we know little about reproductive-aged autistic women's health. This study used administrative data from Ontario, Canada, to compare the health of reproductive-aged autistic women with non-autistic women. Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, history of assault, and use of potentially teratogenic medications (i.e. drugs that can be harmful to the development of an embryo or fetus). These findings suggest that there is a need for health interventions tailored to the needs of reproductive-aged autistic women.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Adulto , Transtorno Autístico/epidemiologia , Doença Crônica , Estudos Transversais , Feminino , Humanos , Ontário/epidemiologia
16.
J Womens Health (Larchmt) ; 29(12): 1564-1575, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32678692

RESUMO

Background: There is growing recognition that preconception health, defined as the health of all reproductive-age individuals, impacts reproductive and perinatal outcomes. Although women with disabilities are becoming pregnant at increasing rates, little is known about their preconception health. Our objective was to describe the preconception health characteristics of women with physical, sensory, and intellectual/developmental disabilities and compare these characteristics with women without disabilities. Materials and Methods: We conducted a population-based cross-sectional study of 15- to 44-year-old women with physical (n = 253,184), sensory (n = 93,170), intellectual/developmental (n = 8,986), and multiple disabilities (n = 29,868), and women without these disabilities (n = 2,307,822) using Ontario health administrative data (2017-2018). We described preconception health variables related to social determinants of health, physical health status, psychosocial well-being, history of assault, medication use, and continuity of primary care and compared women with and without disabilities in crude and age-standardized analyses, with standardized differences >0.10 indicating clinically meaningful results. Results: Women with physical, sensory, intellectual/developmental, and multiple disabilities had poorer preconception health than women without disabilities. Disparities were pronounced for physical health status, psychosocial well-being, use of potentially teratogenic medications, and history of assault. Of all groups, women with intellectual/developmental disabilities had the greatest disparities. Conclusion: Further research is needed to identify contributors to poor preconception health among women with disabilities and to develop tailored preconception health interventions to meet their unique needs and experiences.


Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Disparidades nos Níveis de Saúde , Deficiência Intelectual , Vigilância da População/métodos , Cuidado Pré-Concepcional , Adolescente , Adulto , Estudos Transversais , Deficiências do Desenvolvimento/epidemiologia , Feminino , Humanos , Saúde Mental , Ontário/epidemiologia , Gravidez , Qualidade de Vida , Determinantes Sociais da Saúde , Adulto Jovem
17.
Am J Prev Med ; 59(3): 437-444, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32605865

RESUMO

INTRODUCTION: Postpartum health care among women with intellectual and developmental disabilities has not been well studied. This study uses administrative claims to compare postpartum outpatient visits among women with and without intellectual and developmental disabilities. METHODS: Massachusetts All Payers Claims Database 2012-2015 was used to identify women with intellectual and developmental disabilities and a live birth during 2012-2014, matched by infant birth year to 3 women without intellectual and developmental disabilities. Women were followed up for 1 year after delivery. Analyses were conducted in 2019. Poisson regression compared guideline-concordant postpartum and other outpatient visits during the early (21-56 days after delivery) and late (57-365 days after delivery) periods. Types of nonpostpartum care visits were examined. RESULTS: Overall, 962 and 2,886 women with and without intellectual and developmental disabilities, respectively, comprised the sample. Among women with intellectual and developmental disabilities, 23.9% had a postpartum visit in the early and 33.3% in the late postpartum periods, compared with 25.2% and 32.1% of women without intellectual and developmental disabilities who had visits in the early and late postpartum periods, respectively (p=0.49, 0.59). Women with intellectual and developmental disabilities were more likely to have other outpatient visits than those without intellectual and developmental disabilities, both in the early (63.1% vs 40.3%, adjusted RR=1.42, 95% CI=1.28, 1.58, p<0.001) and late (94.2% vs 82.3%, RR=1.11, 95% CI=1.08, 1.14, p=0.008) postpartum periods. Ancillary services, home health services, and alcohol/drug-related visits were much more common among women with intellectual and developmental disabilities. CONCLUSIONS: Women with intellectual and developmental disabilities are equally likely to receive guideline-concordant postpartum visits and more likely to have other outpatient visits than other women. Further research is needed to evaluate visit quality and identify best practices to support mothers with intellectual and developmental disabilities during the postpartum period.


Assuntos
Atenção à Saúde , Deficiências do Desenvolvimento , Complicações na Gravidez , Criança , Deficiências do Desenvolvimento/epidemiologia , Feminino , Humanos , Massachusetts , Período Pós-Parto , Gravidez
18.
Public Health Nutr ; 23(17): 3204-3210, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32515724

RESUMO

OBJECTIVE: To compare exposure to household food insufficiency and the relationship between household food insufficiency and both health status and emergency healthcare utilisation among children with and without special healthcare needs (SHCN). DESIGN: Analysing pooled data from the 2016-2017 iterations of the National Survey of Children's Health, we conducted multivariate logistic regressions on household food insufficiency, health status and emergency healthcare utilisation. We assessed interactions between household food insufficiency and children's SHCN status in our models of health status and utilisation. SETTING: United States. PARTICIPANTS: Parents of a nationally representative sample of non-institutionalised children (aged 0-17 years). RESULTS: Children with SHCN were more likely to experience household food insufficiency (70 v. 56 %), non-excellent health status (67 v. 28 %) and emergency healthcare utilisation (32 v. 18 %) than other children. Household food insufficiency was associated with 37 % (children with SHCN) and 19 % (children without SHCN) reductions in the likelihood of having excellent health. Household food insufficiency was associated with a roughly equal (16-19 %) increase in the likelihood of emergency department utilisation across groups. CONCLUSIONS: Compared with other children, children with SHCN have an elevated risk of exposure to household food insufficiency and experiencing greater reductions in health status when exposed.


Assuntos
Acessibilidade aos Serviços de Saúde , Nível de Saúde , Pais , Criança , Serviço Hospitalar de Emergência , Feminino , Humanos , Modelos Logísticos , Masculino , Aceitação pelo Paciente de Cuidados de Saúde , Pobreza , Estados Unidos
19.
Intellect Dev Disabil ; 58(2): 126-138, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-32240049

RESUMO

Understanding the pregnancy experiences of racial and ethnic minority women with intellectual and developmental disabilities (IDD) is critical to ensuring that policies can effectively support these women. This research analyzed data from the 1998-2013 Massachusetts Pregnancy to Early Life Longitudinal (PELL) data system to examine the racial and ethnic disparities in birth outcomes and labor and delivery charges of U.S. women with IDD. There was significant preterm birth disparity among non-Hispanic Black women with IDD compared to their non-Hispanic White peers. There were also significant racial and ethnic differences in associated labor and delivery-related charges. Further research, examining potential mechanisms behind the observed racial and ethnic differences in labor and delivery-related charges in Massachusetts' women with IDD is needed.


Assuntos
Deficiências do Desenvolvimento/epidemiologia , Disparidades em Assistência à Saúde/estatística & dados numéricos , Deficiência Intelectual/epidemiologia , Complicações na Gravidez/economia , Complicações na Gravidez/epidemiologia , Resultado da Gravidez/economia , Resultado da Gravidez/epidemiologia , Adulto , Etnicidade , Feminino , Humanos , Gravidez , Nascimento Prematuro/epidemiologia , Fatores Raciais , Estados Unidos , Adulto Jovem
20.
Disabil Health J ; 13(3): 100909, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32139320

RESUMO

BACKGROUND: Women with disabilities experience significant health disparities. A barrier to progress in addressing these disparities is the lack of population-based data on their health outcomes, which are needed to plan health care delivery systems. Administrative health data are increasingly being used to measure the health of entire populations, but these data may only capture impairment and not activity and participation restrictions. OBJECTIVE: We conducted a systematic review to identify and appraise existing literature on the development and validation of algorithms to identify reproductive-aged women with physical and sensory disabilities in administrative health data. METHODS: We searched Medline, EMBASE, CINAHL, PsycINFO, and Scopus from inception to April 2019 for studies of the development and/or validation of algorithms using diagnostic, procedural, or prescription codes to identify physical and sensory disabilities in administrative health data. Study and algorithm characteristics were extracted and quality was assessed using standardized instruments. RESULTS: Of 14,073 articles initially identified, we reviewed 6 articles representing 2 unique algorithms. One algorithm aimed to correlate diagnoses, procedure codes, and prescriptions with ability to access routine care as an indicator of functional limitation. The other algorithm used diagnostic and procedure codes to identify use of mobility-assistive devices to measure functional limitation. Only one algorithm was validated against self-reported disability. CONCLUSIONS: Our findings underscore the need to strengthen current methods to identify disability in administrative health data, including linkage with other sources of information on functional limitations, so that population-based data can be used to optimize health care for women with disabilities.


Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Disparidades em Assistência à Saúde/estatística & dados numéricos , Autorrelato/estatística & dados numéricos , Adulto , Algoritmos , Feminino , Nível de Saúde , Humanos , Transtornos dos Movimentos/epidemiologia , Transtornos de Sensação/epidemiologia , Estados Unidos/epidemiologia
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