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OBJECTIVES: Preconception health (PCH), which describes the health status of reproductive-aged individuals, can influence reproductive, maternal, and fetal/neonatal outcomes. PCH disparities have been observed in certain populations, prompting the development of tailored resources. Our objective was to compare the PCH characteristics of women with and without disabilities. METHODS: We undertook a secondary analysis of the 2003-2014 cycles of the Canadian Community Health Survey (CCHS), which included n = 115,295 women aged 15-49 years. Among these, we also examined a sub-sample of n = 12,495 women with a subsequent obstetrical delivery identified in a linkage of the CCHS with the Discharge Abstract Database (DAD, 2003-2017). The outcomes were 8 PCH indicators. We used modified Poisson regression to estimate adjusted prevalence ratios (aPRs) for each PCH indicator, comparing women with and without disabilities, and multinomial logistic regression to calculate adjusted odds ratios for 1, 2, and ≥ 3 PCH indicators (vs. 0). Analyses were adjusted for baseline demographics. RESULTS: Reproductive-aged women with disabilities had significantly increased aPRs of smoking (1.42 [95% CI:1.37-1.48]), obesity (1.57 [1.48-1.65]), and self-reported fair/poor physical (5.56 [5.09-6.07]) and mental health (4.07 [3.71-4.47]), compared to those without disabilities. They were also more likely to have ≥ 3, 2, and 1 PCH indicators (vs. 0). Findings were similar in the sub-sample with a subsequent obstetrical delivery. CONCLUSION: Canadian reproductive-aged women with disabilities experience important PCH disparities. Further research is needed to inform tailored education and resources to support PCH in individuals with disabilities, in combination with policies to address structural barriers to PCH.
RéSUMé: OBJECTIFS: La santé préconceptionnelle (SPC), qui décrit l'état de santé des personnes en âge de procréer, peut influencer les résultats reproductifs, maternels et fÅtaux/néonataux. Des disparités en matière de SPC ont été observées dans certaines populations, ce qui a conduit à la mise en place de ressources adaptées. Notre objectif était de comparer les caractéristiques de la SPC des femmes handicapées et non handicapées. MéTHODES: Nous avons entrepris une analyse secondaire des cycles 20032014 de l'Enquête sur la santé dans les collectivités canadiennes (ESCC), qui comprenait n = 115 295 femmes âgées de 15 à 49 ans. Parmi celles-ci, nous avons également examiné un sous-échantillon de n = 12 495 femmes ayant subi un accouchement obstétrique subséquent, identifiées dans le cadre d'un couplage de l'ESCC avec la Base de données sur les congés des patients (BDCP, 2003â2017). Les résultats étaient 8 indicateurs de la SPC. Nous avons utilisé la régression de Poisson modifiée pour estimer les ratios de prévalence ajustés (aPR) pour chaque indicateur SPC, en comparant les femmes avec et sans handicap, et la régression logistique multinomiale pour calculer les rapports de cotes ajustés pour 1, 2 et ≥ 3 indicateurs SPC (par rapport à 0). Les analyses ont été ajustées en fonction des données démographiques de base. RéSULTATS: Les femmes handicapées en âge de procréer présentaient des aPR significativement plus élevés de tabagisme (1,42 [IC 95%: 1,37 à 1,48]), d'obésité (1,57 [1,48 à 1,65]) et de santé physique (5,56 [5,09 à 6,07]) et mentale (4,07 [3,71 à 4,47]) auto déclarée passable/mauvaise, par rapport à celles qui n'avaient pas de handicap. Elles étaient également plus susceptibles d'avoir ≥ 3, 2 et 1 indicateurs SPC (par rapport à 0). Les résultats étaient similaires dans le sous-échantillon avec un accouchement obstétrical ultérieur. CONCLUSION: Les femmes handicapées en âge de procréer au Canada connaissent d'importantes disparités en matière de SPC. D'autres recherches sont nécessaires pour fournir une éducation et des ressources adaptées afin de soutenir la SPC chez les personnes handicapées, en combinaison avec des politiques visant à éliminer les obstacles structurels à la SPC.
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Pessoas com Deficiência , Disparidades nos Níveis de Saúde , Inquéritos Epidemiológicos , Cuidado Pré-Concepcional , Humanos , Feminino , Canadá/epidemiologia , Adulto , Pessoa de Meia-Idade , Adolescente , Adulto Jovem , Pessoas com Deficiência/estatística & dados numéricos , Cuidado Pré-Concepcional/estatística & dados numéricos , GravidezRESUMO
Introduction: Sexual minoritized people report worse mental health and are at risk of sexual violence compared to their heterosexual peers. Method: We conducted a survey to explore sexual stigma, sexual violence, and mental health among 326 bi+ and lesbian women and gender minoritized people age 18-25. Results: Mental health did not differ by sexual identity; sexual stigma and violence were associated with negative mental health symptoms, as were identifying as BIPOC, as trans or nonbinary, or having less formal education. Conclusion: Sexual stigma and violence are related to mental health among young bi+ and lesbian women and gender minoritized people.
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BACKGROUND: Substance use in pregnancy raises concern given its potential teratogenic effects. Given the unique needs of parenting people and the potential impact for developing children, specialized substance use treatment programs are increasingly being implemented for this population. Substance use treatment is associated with more positive neonatal outcomes compared with no treatment, however treatment models vary limiting our understanding of key treatment components/modelsFew studies have explored the influence of treatment model type (i.e., integrated treatments designed for pregnant clients compared with standard treatment models) and no studies have examined the influence of treatment model on neonatal outcomes using Canadian data. METHOD: We conducted a population-based cohort study of clients who were pregnant when initiating integrated (n = 564) and standard (n = 320) substance use treatment programs in Ontario, Canada. RESULTS: Neonatal outcomes did not significantly differ by treatment type (integrated or standard), with rates of adverse neonatal outcomes higher than published rates for the general population, despite receipt of adequate levels of prenatal care. While this suggests no significant impact of treatment, it is notable that as a group, clients engaged in integrated treatment presented with more risk factors for adverse neonatal outcomes than those in standard treatment. While we controlled for these risks in our analyses, this may have obscured their influence in relation to treatment type. CONCLUSION: Findings underscore the need for more nuanced research that considers the influence of client factors in interaction with treatment type. Pregnant clients engaged in any form of substance use treatment are at higher risk of having children who experience adverse neonatal outcomes. This underscores the urgent need for further investment in services and research to support maternal and neonatal health before and during pregnancy, as well as long-term service models that support women and children beyond the perinatal and early childhood periods.
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We compared maternal, labour/delivery, and birth outcomes in women with versus without disabilities using a linkage of 2003-2014 Canadian Community Health Survey (CCHS) and 2003-2017 Discharge Abstract Database data. Modified Poisson regression was used to compare 15-49-year-old women with (n = 2430) and without (n = 10 375) disabilities with a singleton birth ≤5 years after their CCHS interview. Women with disabilities were at elevated risk of prenatal hospitalization (10.3% vs. 6.6%; adjusted prevalence ratio 1.33, 95% CI 1.03-1.72). They were also at elevated risk of preterm birth (8.7% vs. 6.2%), but this was attenuated after adjustment. Women with disabilities could benefit from tailored prenatal care.
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Pessoas com Deficiência , Nascimento Prematuro , Gravidez , Feminino , Recém-Nascido , Humanos , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Resultado da Gravidez/epidemiologia , Canadá/epidemiologia , Dados de Saúde Coletados RotineiramenteRESUMO
We describe the disability-related education and training experiences of perinatal care providers in Ontario. Twenty perinatal care providers (e.g., obstetricians, midwives) participated in semi-structured interviews. Using a content analysis approach, we found most acquired disability-related training through their own initiative as opposed to education through professional training programs. Barriers to training included lack of data on disability and pregnancy and limited experiential learning opportunities. Providers recommended that future training focus on experiential learning and social determinants of health, with people with disabilities involved in developing and delivering training. These efforts are vital to optimize pregnancy outcomes for people with disabilities.
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Tocologia , Assistência Perinatal , Gravidez , Feminino , Recém-Nascido , Criança , Humanos , Ontário , Pesquisa Qualitativa , Resultado da GravidezRESUMO
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.
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Pessoas com Deficiência , Tocologia , Gravidez , Feminino , Humanos , Cuidado Pré-Natal , Ontário , Parto , Pesquisa QualitativaRESUMO
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.
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Pessoas com Deficiência , Deficiência Intelectual , Recém-Nascido , Humanos , Feminino , Atenção à Saúde , Período Pós-Parto , Ontário , Pesquisa QualitativaRESUMO
BACKGROUND: Limited research captures the intersectional and nuanced experiences of lesbian, gay, bisexual, transgender, queer, two-spirit, and other sexual and gender-minoritized (LGBTQ2S+) people when accessing perinatal care services, including care for pregnancy, birth, abortion, and/or pregnancy loss. METHODS: We describe the participatory research methods used to develop the Birth Includes Us survey, an online survey study to capture experiences of respectful perinatal care for LGBTQ2S+ individuals. From 2019 to 2021, our research team in collaboration with a multi-stakeholder Community Steering Council identified, adapted, and/or designed survey items which were reviewed and then content validated by community members with lived experience. RESULTS: The final survey instrument spans the perinatal care experience, from preconception to early parenthood, and includes items to capture experiences of care across different pregnancy roles (eg, pregnant person, partner/co-parent, intended parent using surrogacy) and pregnancy outcomes (eg, live birth, stillbirth, miscarriage, and abortion). Three validated measures of respectful perinatal care are included, as well as measures to assess experiences of racism, discrimination, and bias across intersections of identity. DISCUSSION AND CONCLUSIONS: By centering diverse perspectives in the review process, the Birth Includes Us instrument is the first survey to assess the range of experiences within LGBTQ2S+ communities. This instrument is ready for implementation in studies that seek to examine geographic and identity-based perinatal health outcomes and care experiences among LGBTQ2S+ people.
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Homossexualidade Feminina , Minorias Sexuais e de Gênero , Pessoas Transgênero , Gravidez , Feminino , Humanos , Parto , Comportamento SexualRESUMO
Purpose: Perinatal mental health disorders are common, and rates have increased during the COVID-19 pandemic. It is unclear where providers may improve perinatal mental health care, particularly in countries lacking national guidelines, such as Canada. Methods: A cross-sectional survey of perinatal health providers was conducted to describe the landscape of perinatal mental health knowledge, screening, and treatment practices across Canada. Providers were recruited through listservs, social media, and snowball sampling. Participants completed an online survey that assessed their perinatal mental health training, service provision types, their patient wait times, and treatment barriers, and COVID-19 pandemic-related impacts. Results: A total of 435 providers completed the survey, including physicians, midwives, psychologists, social workers, nurses, and allied non-mental health professionals. Most (87.0%) did not have workplace mandated screening for perinatal mental illness but a third (66%) use a validated screening tool. Many (42%) providers stated their patients needed to wait more than 2 months for services. More than half (57.3%) reported they did not receive or were unsure if they received specialized training in perinatal mental health. Most (87.0%) indicated there were cultural, linguistic, and financial barriers to accessing services. Over two-thirds (69.0%) reported the COVID-19 pandemic reduced access to services. Conclusion: Survey findings reveal significant gaps in training, screening tool use, and timely and culturally safe treatment of perinatal mental health concerns. There is critical need for coordinated and nationally mandated perinatal mental health services in Canada to improve care for pregnant and postpartum people.
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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.
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Pessoas com Deficiência , Síndrome de Abstinência Neonatal , Nascimento Prematuro , Peso ao Nascer , Estudos de Coortes , Feminino , Humanos , Recém-Nascido , Mães , Ontário/epidemiologia , GravidezRESUMO
BACKGROUND: Effective provider-patient communication is a key element of quality health care, including perinatal care. What constitutes "effective communication" in perinatal care may vary according to the population seeking care, such as women with intellectual and developmental disabilities (IDD) and sensory disabilities. Research broadly indicates that communication issues are among the barriers to perinatal care experienced by women with disabilities. However, few studies have explicitly explored their communication experiences in this context. The purpose of this study was to understand the communication experiences of birthing people with IDD and/or sensory disabilities in perinatal care. METHODS: We conducted semi-structured interviews with 17 people with IDD (e.g., autism, cognitive delay) and/or sensory disabilities (e.g., d/Deaf, blind) in Ontario, Canada, who had recently given birth, to explore barriers to and facilitators of effective communication in perinatal care. A combination of deductive and inductive thematic analysis guided data analysis. RESULTS: We found that birthing people with IDD and/or sensory disabilities encountered multiple barriers to effective communication in perinatal care, namely, lack of policies and guidelines, lack of provider experience, lack of provider effort, as well as ableism and provider assumptions. Facilitators included knowledgeable, aware, and supportive providers; access to communication aids and services; tailoring information to patients' disability-related communication needs; empathic communication; and, communication among providers. CONCLUSION: Unmet communication needs may contribute to negative health and social outcomes for birthing people with disabilities and their newborns. Accessibility policy implementation and practice change are needed to meet the communication needs of people with IDD and/or sensory disabilities in perinatal care to ensure positive experiences and outcomes.
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Deficiências do Desenvolvimento , Assistência Perinatal , Criança , Comunicação , Deficiências do Desenvolvimento/terapia , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Recém-Nascido , Ontário , GravidezRESUMO
BACKGROUND: Women with disabilities experience elevated risks for pregnancy complications and report barriers accessing prenatal care. Emerging evidence highlights the significant role primary care providers play in promoting preventive services like prenatal care. OBJECTIVE: To examine the relationship between continuity of primary care (COC) and prenatal care adequacy among women with disabilities. METHODS: We conducted a population-based study using health administrative data in Ontario, Canada. The study population included 15- to 49-year-old women with physical (n = 106,555), sensory (n = 32,194), intellectual/developmental (n = 1515), and multiple (n = 6543) disabilities who had a singleton livebirth or stillbirth in 2003-2017 and ≥ 3 primary care visits < 2 years before conception. COC was measured using the Usual Provider of Care Index. Nominal logistic regression was used to compute adjusted odds ratios (aOR) for prenatal care adequacy, measured using the Revised-Graduated Prenatal Care Utilization Index, for women with low versus moderate/high COC, controlling for other social and medical characteristics. RESULTS: Women with disabilities with low COC, versus those with moderate/high COC, had increased odds of no (aOR 1.42, 95% CI 1.29-1.56), inadequate (aOR 1.19, 95% CI 1.16-1.23), and intensive prenatal care (aOR 1.22, 95% CI 1.19-1.25) versus adequate. In additional analyses, women with low COC and no/inadequate prenatal care were the most socially disadvantaged among the cohort, and those with low COC and intensive prenatal care had the greatest medical need. CONCLUSION: Improving primary care access for women with disabilities, particularly those experiencing social disadvantage, could lead to better prenatal care access.
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Pessoas com Deficiência , Cuidado Pré-Natal , Adolescente , Adulto , Estudos de Coortes , Continuidade da Assistência ao Paciente , Feminino , Humanos , Pessoa de Meia-Idade , Ontário , Gravidez , Atenção Primária à Saúde , Adulto JovemRESUMO
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.
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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/terapiaRESUMO
INTRODUCTION: This study examines prenatal care adequacy among women with physical, sensory, and intellectual/developmental disabilities, compared with that among women without disabilities. METHODS: A population-based cohort study using linked health administrative data in Ontario, Canada was completed. The study population comprised women with physical (n=83,752), sensory (n=25,685), intellectual/developmental (n=1,219), and multiple (n=4,966) disabilities and women without disabilities (n=953,766), with a birth in 2003-2017. Analyses were conducted in 2020. Women with disabilities were identified using algorithms applied to healthcare encounters before conception. The main outcome was prenatal care adequacy, measured using the Revised Graduated Prenatal Care Utilization Index. Multivariable nominal logistic regression was used to compute the AORs and 95% CIs for no, inadequate, and intensive (versus adequate) care comparing each disability group with women without disabilities, adjusting for sociodemographic and health characteristics. RESULTS: Women with physical disabilities, compared with those without disabilities, had increased odds of intensive prenatal care (AOR=1.22, 95% CI=1.19, 1.24) and decreased odds of no prenatal care (AOR=0.94, 95% CI=0.89, 0.99) versus adequate care. Women with sensory disabilities had increased odds of intensive (AOR=1.11, 95% CI=1.08, 1.14), inadequate (AOR=1.06, 95% CI=1.02, 1.09), and no (AOR=1.24, 95% CI=1.14, 1.35) prenatal care. Women with intellectual/developmental disabilities had increased odds of inadequate (AOR=1.25, 95% CI=1.08, 1.44) and no (AOR=1.64, 95% CI=1.16, 2.34) prenatal care. Women with multiple disabilities had increased odds of intensive (AOR=1.41, 95% CI=1.32, 1.51) and inadequate (AOR=1.14, 95% CI=1.05, 1.22) prenatal care. CONCLUSIONS: There are variations in prenatal care adequacy by maternal disability status. Disparities in prenatal care access for women with disabilities, particularly those with intellectual/developmental disabilities, need to be addressed.
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Pessoas com Deficiência , Complicações na Gravidez , Criança , Estudos de Coortes , Deficiências do Desenvolvimento , Feminino , Humanos , Ontário/epidemiologia , Gravidez , Cuidado Pré-NatalRESUMO
BACKGROUND: Accessible and quality care during the perinatal period is critical for optimal maternal and neonatal health. Using the socio-ecological model, the purpose of this study was to explore barriers and facilitators that shape the perinatal care experiences of people with intellectual and/or developmental disabilities (IDD). METHODS: Semi-structured interviews were conducted with 10 individuals with IDD in Ontario, Canada, who had given birth within the past 5 years. Interviews focused on care experiences before, during, and after pregnancy. Data were analyzed using a directed content analysis approach, and the socio-ecological model guided analysis. RESULTS: Barriers at the societal (e.g., cultural norms of motherhood), policy/institutional (e.g., child protection policies and practices), interpersonal (e.g., inadequate formal and informal support), and intrapersonal levels (e.g., internalized stigma) contributed to participants having negative perinatal care experiences. Conversely, we identified facilitators on the interpersonal level (e.g., positive interactions with perinatal care providers and familial and social service supports) as positively shaping participants' perinatal care experiences. CONCLUSIONS: Findings reveal that the perinatal care experiences of people with IDD are shaped by several interrelated factors that largely stem from societal-level barriers, such as dominant (stigmatizing) discourses of disability. To improve the perinatal care experiences of people with IDD, there is a need for interventions at multiple levels. These include the development of policies to support perinatal care for diverse populations and training care providers to enact policies at the institutional and interpersonal levels.
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Pessoas com Deficiência , Assistência Perinatal , Deficiências do Desenvolvimento , Feminino , Humanos , Recém-Nascido , Ontário , Parto , GravidezAssuntos
Saúde Reprodutiva , Minorias Sexuais e de Gênero , Bissexualidade , Humanos , Educação SexualRESUMO
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 (144â¯972 women; mean [SD] age, 29.8 [5.6] years), sensory disabilities (45â¯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 (1â¯601â¯363 women; mean [SD] age, 29.6 [5.4] years). The rate of severe maternal morbidity or death was 1.7% (27â¯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.
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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 JovemRESUMO
OBJECTIVE: To describe evidence-based practice for managing the labour, delivery, and postpartum care of people with physical disabilities in Canada. TARGET POPULATION: This guideline addresses the needs of people with physical disabilities, with a focus on conditions that affect strength and mobility, as well as those that affect neurological or musculoskeletal function or structure. Although aspects of this guideline may apply to people with solely intellectual, developmental, or sensory disabilities (e.g., hearing and vision loss), the needs of this population are beyond the scope of this guideline. OUTCOMES: Safe and compassionate care for people with physical disabilities who are giving birth. BENEFITS, HARMS, AND COSTS: Implementation of this guideline will improve health care provider awareness of specific complications people with physical disabilities may experience during labour, delivery, and the postpartum period and therefore increase the likelihood of a safe birth. EVIDENCE: A literature review was conducted using MEDLINE (474), Embase (36), and the Cochrane Central Register of Controlled Trials (CENTRAL; 28) databases. The results have been filtered for English language, publication date of 2013 to present, observational studies, systematic reviews, meta-analyses, and guidelines and references in these publications were also reviewed. VALIDATION METHODS: The authors rated the quality of evidence and strength of recommendations using the Grading of Recommendations Assessment, Development and Evaluation approach. See online Appendix A (Tables A1 for definitions and A2 for interpretations of strong and weak recommendations). INTENDED AUDIENCE: Maternal-fetal medicine specialists, obstetricians, family physicians, nurses, midwives, neurologists, physiatrists, and those who care for people with physical disabilities.
Assuntos
Pessoas com Deficiência , Trabalho de Parto , Cuidado Pré-Concepcional/normas , Complicações na Gravidez , Cuidado Pré-Natal/normas , Canadá , Parto Obstétrico , Feminino , Humanos , Cuidado Pós-Natal , Período Pós-Parto , Gravidez , Sociedades MédicasRESUMO
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.