Maternal disability and newborn discharge to social services: a population-based study
Main Article Content
Abstract
Introduction
Removing a child from their family is the option of last resort for social services. However, decisions to place children into care are occurring more frequently and earlier in children's lives, with newborn discharge to social services being a particular concern due to the effects of mother-newborn separations on child development. Women with disabilities face negative assumptions about their parenting capacity, but little is known about their rates of newborn discharge to social services.
Objectives
To examine the risk of discharge to social services among newborns of women with and without disabilities.
Methods
We conducted a population-based cohort study of singleton livebirths in Ontario, Canada, 2008-2019. We used modified Poisson regression to estimate the relative risk (RR) of discharge to social services immediately after the birth hospital stay, comparing newborns of women with physical (n = 114,685), sensory (n = 38,268), intellectual/developmental (n = 2,094), and multiple disabilities (n = 8,075) to newborns of women without a disability (n = 1,221,765). Within each group, we also examined maternal sociodemographic, health, health care, and pregnancy-related characteristics associated with the outcome.
Results
Compared to newborns of women without disabilities (0.2%), newborns of women with physical (0.5%; aRR 1.53, 95% CI 1.39-1.69), sensory (0.4%; aRR 1.34, 95% CI 1.12-1.59), intellectual/developmental (5.6%; aRR 5.34, 95% CI 4.36-6.53), and multiple disabilities (1.7%; aRR 3.09, 95% CI 2.56-3.72) had increased risk of being discharged to social services after the birth hospital stay. Within each group, the strongest predictors of the outcome were young maternal age, low income quintile, social assistance, maternal mental illness and substance use disorders, inadequate prenatal care, and neonatal morbidity.
Conclusions
Newborns of women with disabilities are at increased risk of being discharged to social services after the birth hospital stay. These findings can be used to inform the development of tailored supports for new mothers with disabilities and their infants.
Introduction
One in five adults have a disability [1]. Historically, people with disabilities have been subject to discrimination and exclusion, including institutional segregation and involuntary sterilization [2]. In recent decades, pregnancy rates in women with disabilities have risen, with population-based studies reporting one in eight pregnancies are to women with a physical, sensory, or intellectual/developmental disability [3]. Many structural, social, and health-related barriers remain for mothers with disabilities [1, 4, 5]. Women with disabilities face negative societal attitudes about sexuality, pregnancy, and parenting [6]. Health and social service-providers consider an unborn baby to be more at risk if their mother has a disability [7]. Women with intellectual/developmental disabilities in particular are over-represented in child protection cases internationally [8–10], and are more likely to have their children placed in out-of-home care than other mothers [11]. Women with other types of disabilities, including physical and sensory disabilities, also describe being fearful of judgement by professionals in relation to their parenting [12], often without clear evidence or opportunity to demonstrate their abilities [13].
Whilst removing a child from their family is the option of last resort for social services, decisions to place children into care are happening more frequently and earlier in children’s lives [13, 14]. Newborn discharge to social services is of particular concern, as mother-infant separation has well-documented negative consequences for children’s emotional, social, and physical development [15], via impacts on attachment, bonding, and breastfeeding [16]. Such intervention is also traumatic for mothers and likely to worsen their own health and perceived parenting competency [17–19]. Without support, women are at risk of being caught in a cycle of recurrent involvement with children’s social services, and having more than one child removed from their care across their lifetime [20].
In our prior analyses of administrative health data in Ontario, Canada (2002–2012), women with intellectual/ developmental disabilities were eight times more likely than women without these disabilities to have their newborn discharged into social services, even after adjusting for other factors [21]. Yet, little is known about the rates at which women with other disabilities have newborns removed from their care and for how long they are separated, instances of multiple separations in families with more than one child, or predictors of these outcomes. Therefore, we extended our prior research and examined the risk of newborn discharge to social services among women with physical, sensory, intellectual/developmental, and multiple disabilities compared to women with no disability using an updated cohort (2008-2019). As secondary objectives, we (1) examined the risk of sustained separations at 12 months, (2) compared the risk of having multiple separations within one family, and (3) in each disability group, identified risk factors that predict newborn discharge to social services.
Methods
Study design
This was a population-based cohort study in Ontario, Canada using linked administrative health and demographic data. We accessed and analyzed health records at ICES (formerly the Institute for Clinical Evaluative Sciences), which houses information on all Ontario residents (population: 14.6 million; births per year: 140,000). Information was obtained on health services contact and socio-demographics (Table 1) and linked using a unique encoded identifier.
Data source | Description |
Canadian Institutes of Health Information Discharge Abstract Database | Diagnoses from hospital admissions, coded using the International Classification of Diseases and Related Health Problems |
National Ambulatory Care Reporting System | Diagnoses from emergency department visits, coded using the International Classification of Diseases and Related Health Problems |
Ontario Health Insurance Plan database | Outpatient physician billing claims |
Ontario Mental Health Reporting System | Diagnoses from hospital admissions in facilities with designated mental health beds, coded using the Diagnostic and Statistical Manual of Mental Disorders |
Registered Persons Database | Dates of birth, dates of death, and residential postal code, linked with Census information |
Study population
The cohort included singleton livebirths conceived between April 1, 2008, and March 31, 2019 and delivered in Ontario hospitals. We excluded non-Ontario residents and those with missing data on neighbourhood income quintile and rurality (Supplementary Appendix 1).
Diagnostic algorithms developed in consultation with clinicians and researchers with expertise in disability were applied to health care encounters to identify maternal disability, as in prior research in Ontario and elsewhere [22–24] (Supplementary Appendix 2). We considered a mother to have a disability if she had a relevant diagnosis in ≥2 outpatient physician visits or any emergency department visit or hospitalization before conception. Women with congenital anomalies, musculoskeletal disorders, neurologic disorders, and permanent injuries were considered to have physical disabilities; those with hearing and vision loss were considered to have sensory disabilities; those with autism spectrum disorder, chromosomal anomalies resulting in intellectual disability, fetal alcohol spectrum disorder, or other intellectual disability were considered to have intellectual/developmental disabilities; and women with diagnoses in ≥2 of these categories were considered to have multiple disabilities. Women without any recorded disabilities were the referent group.
Outcomes
The main outcome was newborn discharge to social services immediately after the birth hospital stay, defined based on (a) the discharge disposition being listed as “social services”, (b) the newborn being transferred from hospital to the Children’s Aid Society, or (c) the presence of diagnostic code Z62.2 (“institutional upbringing”) in the newborn health record [15]. As secondary outcomes: (1) we identified prolonged maternal-newborn separations using discordant residential postal codes at 12 months as a proxy, and (2) among women with at least two livebirths during the study period, we identified those with multiple newborns discharged to social services immediately after the birth hospital stay across the study period.
Covariates
We measured maternal sociodemographic characteristics: age, parity, neighbourhood income quintile, social assistance receipt [25], and rurality. Maternal health was described using stable and unstable chronic conditions (Johns Hopkins Adjusted Clinical Groups System v. 10.0) [26], mental illness, and substance use disorders, each measured in the 2 years before pregnancy. We measured health care using the Revised Graduated Prenatal Care Utilization Index [27], which categorizes prenatal care adequacy based on the timing and number of visits. Finally, we measured several pregnancy characteristics: severe maternal morbidity [28], preterm birth, and severe neonatal morbidity [29]. Full definitions are included in Supplementary Appendix 3.
Statistical analyses
We compared the characteristics of newborns of women with and without disabilities using frequencies, percentages, and standardized differences [30].
We estimated the relative risk (RR) and 95% confidence interval (CI) of discharge to social services, comparing newborns of women with physical, sensory, intellectual/ developmental, and multiple disabilities to those without disabilities, using modified Poisson regression [31] with generalized estimating equations to adjust for clustering of siblings within mothers [32]. We generated crude RRs and RRs adjusted for maternal sociodemographic and health characteristics. Health care and pregnancy characteristics were considered pathway variables and were added to the models in a second step to evaluate their impact on the outcome.
In additional analyses, we used modified Poisson regression to examine the risk of sustained maternal-newborn separation at 12 months. We used multinomial logistic regression to examine the odds ratios (OR) of ≥ 2 and 1, vs. no instances of newborn discharge to social services among women with multiple livebirths during the study period. Finally, within each of the five groups, we used modified Poisson regression to estimate the RR and 95% CI of each predictor variable on newborn discharge to social services. These were: maternal age, parity, neighbourhood income quintile, social assistance receipt, rurality, stable and unstable chronic conditions, mental illness, and substance use disorder; prenatal care adequacy; severe maternal morbidity; preterm birth; and severe neonatal morbidity.
Analyses used SAS v. 9.4 (SAS Institute Inc., Cary, NC).
Results
From 2008-2019, there were 114,685 births to women with physical, 38,268 to women with sensory, 2,094 to women with intellectual/developmental, 8,075 to women with multiple disabilities, and 1,221,765 to women without a disability. Women with sensory, intellectual/ developmental, and multiple disabilities were younger than those without disabilities. Women with intellectual/developmental disabilities were more likely to live in neighbourhoods in the two lowest quintiles, and all disability groups were more likely to receive social assistance. Women with physical and multiple disabilities were more likely to live in rural areas. Women with multiple disabilities were more likely to have stable chronic conditions; all disability groups were more likely to have unstable chronic conditions and mental illness; and those with physical, intellectual/developmental, and multiple disabilities were more likely to have a substance use disorder. Finally, women with multiple disabilities were more likely to experience severe maternal morbidity, and newborns of women with intellectual/developmental and multiple disabilities were more likely to be preterm and experience severe neonatal morbidity (Table 2).
Disability status | Physical | Sensory | Intellectual or developmental | Multiple | None |
N = 114,685 | N = 38,268 | N = 2,094 | N = 8,075 | N = 1,221,765 | |
Maternal age | |||||
15–24 years | 16,628(14.5) | 7,026(18.4)a | 862(41.2)a | 1,657(20.5)a | 168,803(13.8) |
25–34 years | 69,358(60.5) | 22,481(58.7) | 917(43.8)a | 4,572(56.6)a | 777,677(63.7) |
35–49 years | 28,699(25.0) | 8,761(22.9) | 315(15.0)a | 1,846(22.9) | 275,285(22.5) |
Multiparous | 66,346(56.1) | 20,814(54.4) | 1,133(54.1) | 4,497(55.7) | 684,982(56.1) |
Neighbourhood income Q1 or Q2 | 46,710(40.7) | 15,996(41.7) | 1,240(58.8)a | 3,681(45.4) | 517,774(42.2) |
Social assistance | 18,339(16.0)a | 5,800(15.2)a | 1,086(51.9)a | 2,361(29.2)a | 118,835(9.7) |
Rural residence | 15,241(13.2)a | 4,329(11.3) | 247(11.7) | 1,053(13.0)a | 117,252(9.6) |
Stable chronic condition | 35,260(30.7) | 11,502(30.0) | 612(29.2) | 2,969(36.8)a | 327,531(26.8) |
Unstable chronic condition | 19,245(16.8)a | 5,877(15.4)a | 370(17.6)a | 1,880(23.3)a | 143,059(11.7) |
Mental illness | 22,853(19.9)a | 6,595(17.2)a | 838(40.0)a | 2,242(27.8)a | 147,193(12.1) |
Substance use disorder | 2,805(2.5)a | 506(1.3) | 154(7.4)a | 335(4.2)a | 12,181(1.0) |
No, inadequate, or intermediate prenatal care | 30,450(26.6) | 10,151(26.5) | 663(31.7) | 2,000(24.9) | 342,100(28.0) |
Severe maternal morbidity | 4,248(3.7) | 1,398(3.6) | 94(4.5) | 430(5.3)a | 34,280(2.8) |
Preterm birth | 8,681(7.6) | 2,793(7.3) | 198(9.5)a | 797(9.9)a | 73,004(6.0) |
Severe neonatal morbidity | 11,042(9.6) | 3,727(9.7) | 262(12.5)a | 918(11.4)a | 99,545(8.1) |
Compared to newborns of women without disabilities (0.2%), newborns of women with physical (0.5%; aRR 1.53, 95% CI 1.39–1.69), sensory (0.4%; aRR 1.34, 95% CI 1.12–1.59), intellectual/developmental (5.6%; aRR 5.34, 95% CI 4.36–6.53), and multiple disabilities (1.7%; aRR 3.09, 95% CI 2.56–3.72) had elevated risks of discharge to social services after the birth hospital stay, after adjusting for maternal sociodemographic and health characteristics. Findings were similar after further adjusting for health care and pregnancy characteristics (Figure 1).
Among women with multiple livebirths during the study period, those with physical (aOR 2.00, 95% CI 1.51–2.64), intellectual/developmental (aOR 8.53, 95% CI 4.64–15.68), and multiple disabilities (aOR 4.47, 95% CI 2.68–7.45) had increased odds of having ≥2 newborns discharged to social services. Those with sensory disabilities did not (Table 3).
Disability status | Unadjusted OR (95% CI) | Adjusted OR (95% CI) a | Adjusted OR (95% CI) b | |||
≥2 | 1 | ≥2 | 1 | ≥2 | 1 | |
No disability (N = 728,538) | Referent(1.00) | Referent(1.00) | Referent(1.00) | Referent(1.00) | Referent(1.00) | Referent(1.00) |
Physical disability only (N = 69,585) | 3.21 (2.44–4.21) | 2.16 (1.89–2.49) | 2.00 (1.51–2.64) | 1.40 (1.21–1.62) | 1.97 (1.48–2.60) | 1.38 (1.19–1.59) |
Sensory disability only (N = 23,645) | 1.76 (1.01–3.09) | 1.74 (1.36–2.22) | 1.28 (0.73–2.25) | 1.27 (0.98–1.63) | 1.31 (0.75–2.31) | 1.27 (0.99–1.64) |
Intellectual/developmental disability only (N = 1,221) | 36.11 (20.05-65.03) | 21.77 (15.64–30.30) | 8.53 (4.64–15.68) | 5.39 (3.77–7.0) | 8.74 (4.73–16.14) | 5.47 (3.82–7.86) |
Multiple disabilities (N = 4,818) | 11.06 (6.74–18.2) | 7.36 (5.67–9.56) | 4.47 (2.68–7.45) | 3.05 (2.30–4.03) | 4.51 (2.69–7.56) | 3.06 (2.31–4.06) |
Newborns of women with physical, sensory, intellectual/ developmental, and multiple disabilities also had an increased risk of sustained maternal-newborn separation at 12 months (Table 4).
Disability status | Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI) a | Adjusted RR (95% CI) b |
No disability (N = 1,221,765) | 2,013 (0.2) | Referent (1.00) | Referent (1.00) | Referent (1.00) |
Physical disability only (N = 114,685) | 482 (0.4) | 2.61 (2.34–2.92) | 1.64 (1.47–1.83) | 1.59 (1.43–1.78) |
Sensory disability only (N = 38,268) | 117 (0.3) | 1.77 (1.44–2.17) | 1.23 (1.00–1.52) | 1.22 (0.99–1.49) |
Intellectual/developmental disability only (N = 2,094) | 108 (5.2) | 29.00 (22.43–37.48) | 6.12 (4.92–7.62) | 5.85 (4.69–7.30) |
Multiple disabilities (N = 8,075) | 124 (1.5) | 8.97 (7.24–11.12) | 3.44 (2.81–4.22) | 3.36 (2.75–4.11) |
Finally, among newborns of women with physical (Supplementary Appendix 4), sensory (Supplementary Appendix 5), intellectual/developmental (Supplementary Appendix 6), and multiple disabilities (Supplementary Appendix 7), and newborns of women without disabilities (Supplementary Appendix 8), the strongest predictors of newborn discharge to social services were young maternal age, low neighbourhood income quintile, social assistance receipt, mental illness and substance use disorders; inadequate prenatal care; and severe neonatal morbidity.
Discussion
In this population-based cohort study, we found higher rates of discharge to social services, including sustained and multiple separations, among newborns of women with disabilities, with particularly high rates in newborns of women with intellectual/developmental and multiple disabilities. Across all groups, the strongest predictors of newborn discharge to social services were indicators of young maternal age, poverty, maternal mental illness and substance use disorders, inadequate prenatal care, and neonatal complications. Our findings suggest that women with disabilities and their newborns could benefit from the development of tailored, family-centred services, and that these services should target social and mental health inequities as well as perinatal stressors such as newborn health issues. Many of these risk factors, such as living in poverty and experiencing poor health, might be mitigated by preconception and prenatal services, via comprehensive health and social care support, inclusive of family planning.
Several studies have described the over-representation of women with intellectual/ developmental disabilities in child protection cases, with most studies examining children of any age and showing a prevalence of 26% to 87% across studies [33, 34, 35]. Only two studies have examined newborn discharge to social services in this population. In a study of 53,565 women in Manitoba, Canada, maternal intellectual/developmental disability was associated with a seven times greater odds of newborn discharge to social services [36]. Likewise, we previously found newborns of women with intellectual/developmental disabilities had an eight times greater risk of discharge to social services [21]. To our knowledge, no studies have examined this outcome across diverse disability groups, thus showing the novelty of our study. Our study also suggests that sustained and multiple separations are more likely to occur.
We know from previous research that a myriad of factors can increase the risk of children’s social services involvement for families, including young maternal age, living in poverty, and maternal mental illness or substance use [9, 36]. In our study, as in previous research [37–39], we found that women with disabilities have higher rates of such concerns when compared to women with no disabilities. Our findings could therefore indicate that intersectional disadvantages and social vulnerability, of which disability status plays a role, increase the risk of children’s social service involvement.
Additionally, professionals may have concerns around how maternal disabilities impact on safe parenting practices, for example, challenges with cognitive processes, such as memory or organisational skills, or physical capabilities, such as the mobility needed to lift a baby [40, 41]. From qualitative literature, we know women with disabilities fear judgement and assumptions around their parenting abilities [12], with women describing their needs as being largely unmet by services, with little or no access to interventions specific to parenting and child rearing with a disability [41]. These issues are important because studies show that up to 50% of disparities in developmental outcomes of children of women with intellectual/developmental disabilities, for example, could be explained by other factors such as poverty and lack of social support – which are amenable to intervention [42, 43]. Our findings could therefore illustrate more systemic and cultural barriers to parenthood for women with disabilities, including a lack of appropriate services to address the specific needs of parents with disabilities and those of their newborns. Our findings draw particular attention to the prompt involvement of children’s social services at the point of birth, giving families a narrow window of opportunity to engage meaningfully with support and evidence their parenting capabilities [21].
Research suggests many mother-infant separations may be preventable through targeted and timely intervention that can improve outcomes associated with child abuse or neglect, including maternal health, family functioning, and the home environment [44–46]. Approaches to supporting parents at risk of children’s social service involvement include home visiting programs [47], parenting interventions [48], and family-focused casework. Effective interventions have been developed on principles of being strengths-based and flexible in supporting the needs of each family [44]. For example, a home-based intervention supporting parents with intellectual/developmental disabilities reported improvements in caregiving skills and knowledge associated with child safety [48]. Similarly, women with physical disabilities have described the usefulness of adaptations which enabled safer parenting practices, including furniture modifications, specialist equipment, and caregiving support from extended family [49]. Utilising wider social networks of support can be characteristic of child rearing practises within many families [50]. Yet, there is an assumption within child protection that parents must be able to evidence their parenting competency unsupported [51]. Supported and tailored services and resources for women with disabilities could enable them to care effectively for their children. Providing targeted support for women most at risk, including those with comorbid conditions and living in poverty, might reduce the risk of newborn removal for those families [36].
Analysis of administrative health records enables a large-scale examination of the population in Ontario, Canada, but there are limitations to this approach. We were not able to capture health needs that are not known to services or not captured within administrative records. We had no information on social services involvement after birth hospitalization discharge, and used a proxy of discordant maternal-infant postal codes at 12 months to examine whether newborn discharges to social services were sustained, which may not fully capture all cases of foster care and other longer-term separations. We also had no information on other supports around the time of pregnancy that might have impacted the risk of newborn discharge to social services, such as disability support programs, home visiting programs, or parenting skills classes. We also had no information on women’s own history of social service involvement. This limitation highlights the importance of population-based health and social services data linkages to fully understand such experiences. Although we had information on a range of important sociodemographic, health, health care, and pregnancy characteristics, we were unable to examine some of these in detail (e.g., specific type of mental illness or substance use disorder). We were also unable to measure important equity-related variables such as race/ethnicity in these data. Indigenous and Black children are disproportionately represented in the care system across Canada [52, 53], and future research should aim to understand intersectional discrimination for families with children’s social service involvement. Finally, while administrative health data provide a population-based, quantitative picture of important disparities, they do not provide information on individuals’ experiences. Listening to the voices of women with disabilities with children’s social service involvement would be an important next step in understanding needs and experiences of this population.
Conclusion
Women with disabilities may face more systemic challenges and assumptions about their parenting than other mothers. While children’s social services play a crucial role in protecting at-risk children from harm, such as abuse or neglect, there are instances where families may be supported to stay together safely. Our population-based study is the first to evidence the increased risk of newborn entry into social services among women with different types of disabilities. Targeted supports for women with disabilities at heightened risk of children’s social service involvement are needed to prevent mother-newborn separation where possible. Comprehensive interventions should address disability-specific needs, as well as factors associated with increased risk of newborn separation, such as poverty, mental illness, substance use disorders, and perinatal complications.
Acknowledgments
Parts of this material are based on data and/or information compiled and provided by the Canadian Institute for Health Information (CIHI) and the Ontario Ministry of Health (MOH). The analyses, conclusions, opinions and statements expressed herein are solely those of the authors and do not reflect those of the funding or data sources; no endorsement is intended or should be inferred. We thank IQVIA Solutions Canada Inc. for use of their Drug Information File. This document used data adapted from the Statistics Canada Postal CodeOM Conversion File, 2006, 2011, and 2016, which is based on data licensed from Canada Post Corporation, and/or data adapted from the Ontario MOH Postal Code Conversion File, which contains data copied under license from ©Canada Post Corporation and Statistics Canada. This does not constitute an endorsement by Statistics Canada of this product. This study was supported by ICES, which is funded by an annual grant from the Ontario Ministry of Health (MOH) and the Ministry of Long-Term Care (MLTC). Research reported in this publication was supported by a Canadian Institutes of Health Research (CIHR) Early Career Investigator Grant in Maternal, Reproductive, Child, & Youth Health (FRN 155353). Claire Grant is funded by an ESRC UBEL doctoral studentship (ref: ES/P000592/1) and received funding from a UKRI-Mitacs Globalink Doctoral Exchange Award (ref: NE/X006417/1). Hilary K. Brown (2019-00158) and Astrid Guttmann (2021-00104) are supported by CIHR Canada Research Chairs. The funding source had no role in the design or conduct of the study; collection, management, analysis, or interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication.
Statement of conflicts of interest
Simone N. Vigod receives royalties from UpToDate for authorship of materials on depression and pregnancy.
Ethics statement
ICES is a prescribed entity under Ontario’s Personal Health Information Protection Act (PHIPA). Section 45 of PHIPA authorizes ICES to collect personal health information, without consent, for the purpose of analysis or compiling statistical information with respect to the management of, evaluation or monitoring of, the allocation of resources to or planning for all or part of the health system. Projects that use data collected by ICES under section 45 of PHIPA, and use no other data, are exempt from research ethics board review. The use of the data in this project is authorized under section 45 and approved by ICES’ Privacy and Legal Office.
Data availability
The dataset from this study is held securely in coded form at ICES. While legal data sharing agreements between ICES and data providers (e.g., healthcare organizations and government) prohibit ICES from making the dataset publicly available, access may be granted to those who meet pre-specified criteria for confidential access, available at www.ices.on.ca/DAS (email: das@ices.on.ca). The full dataset creation plan and underlying analytic code are available from the authors upon request, understanding that the computer programs may rely upon coding templates or macros that are unique to ICES and are therefore either inaccessible or may require modification.
Abbreviations
CI | confidence interval |
OR | odds ratio |
RR | relative risk |
References
-
World Health Organisation. Global report on health equity for persons with disabilities. Geneva: World Health Organization; 2022. Accessed April 7, 2023. https://www.who.int/publications-detail-redirect/9789240063600.
-
Ontario Human Rights Commission. Policy on ableism and discrimination based on disability. Ottawa: Ontario Human Rights Commission; 2016. Accessed April 11, 2023. https://www.ohrc.on.ca/en/policy-ableism-and-discrimination-based-disability/1-introduction.
-
Brown HK, Chen S, Guttmann A, et al. Rates of recognized pregnancy in women with disabilities in Ontario, Canada. Am J Obstet Gynecol. 2020;222(2):189-92. 10.1016/j.ajog.2019.10.096 https://www.ajog.org/article/S0002-9378(19)31355-9/fulltext.
10.1016/j.ajog.2019.10.096 -
Shandra CL, Hogan DP, Short SE. Planning for motherhood: Fertility attitudes, desires and intentions among women with disabilities. Perspect Sex Reprod Health. 2014;46(4):203-10. 10.1363/46e2514 https://onlinelibrary.wiley.com/doi/abs/10.1363/46e2514?sid=nlm%3Apubmed.
10.1363/46e2514 -
Brown HK, Chen S, Guttmann A, et al. Neonatal outcomes of mothers with a disability. Pediatrics. 2022;150(3):e2021055318. 10.1542/peds.2021-055318 https://publications.aap.org/pediatrics/article/150/3/e2021055318/188733/Neonatal-Outcomes-of-Mothers-With-a-Disability?autologincheck=redirected.
10.1542/peds.2021-055318 -
Proctor SN, Azar ST. The effect of parental intellectual disability status on child protection service worker decision making. J Intellect Disabil Res. 2013;57(12):1104-16. 10.1111/j.1365-2788.2012.01623.x https://onlinelibrary.wiley.com/doi/10.1111/j.1365-2788.2012.01623.x.
10.1111/j.1365-2788.2012.01623.x -
McElhinney H, Taylor B, Sinclair M. Decision making by health and social care professionals to protect an unborn baby: Systematic narrative review. Child Care Pract. 2021;27(3):266-80. 10.1080/13575279.2019.1612733 https://www.tandfonline.com/doi/abs/10.1080/13575279.2019.1612733.
10.1080/13575279.2019.1612733 -
Booth T, Booth W, McConnell D. The prevalence and outcomes of care proceedings involving parents with learning difficulties in the family courts. J Appl Res Intellect Disabil. 2005;18(1):7-17. 10.1111/j.1468-3148.2004.00204.x https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1468-3148.2004.00204.x.
10.1111/j.1468-3148.2004.00204.x -
Grant C, Radley J, Philip G, et al. Parental health in the context of public family care proceedings: A scoping review of evidence and interventions. Child Abuse Negl. 2023;140:106160. 10.1016/j.chiabu.2023.106160 https://linkinghub.elsevier.com/retrieve/pii/S0145-2134(23)00141-2.
10.1016/j.chiabu.2023.106160 -
Rebbe R, Brown SE, Matter RA, Mienko JA. Prevalence of births and interactions with child protective services of children born to mothers diagnosed with an intellectual and/or developmental disability. Matern Child Health J. 2020;25:626-34. 10.1007/s10995-020-03105-z https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8035239/.
10.1007/s10995-020-03105-z -
LaLiberte T, Piescher K, Mickelson N, Lee MH. Child protection services and parents with intellectual and developmental disabilities. J Appl Res Intellect Disabil. 2017;30(3):521-32. 10.1111/jar.12323 https://onlinelibrary.wiley.com/doi/10.1111/jar.12323.
10.1111/jar.12323 -
Tarasoff LA, Lunsky Y, Welsh K, et al. Unmet needs, limited access: A qualitative study of postpartum health care experiences of people with disabilities. J Adv Nurs. 2023;79(9):3324-3336. 10.1111/jan.15642 https://onlinelibrary.wiley.com/doi/full/10.1111/jan.15642.
10.1111/jan.15642 -
McConnell D, Llewellyn G. Stereotypes, parents with intellectual disability and child protection. J Soc Welf Fam Law. 2002;24(3):297-317. 10.1080/09649060210161294 https://www.tandfonline.com/doi/abs/10.1080/09649060210161294.
10.1080/09649060210161294 -
Broadhurst K, Alrouh,B, Mason C, et al. Born into care: Newborns in care proceedings in England. The Nuffield Family Justice Observatory; 2018. Accessed April 12, 2023. https://www.nuffieldfjo.org.uk/resource/born-into-care-newborns-in-care-proceedings-in-england-final-report-october-2018.
-
Howard K, Martin A, Berlin L, et al. Early mother-child separation, parenting, and child well-being. Attach Hum Dev. 2011;13(1):5-26. 10.1080/14616734.2010.488119 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3115616/.
10.1080/14616734.2010.488119 -
Császár-Nagy N, Bókkon I. Mother-newborn separation at birth in hospitals: A possible risk for neurodevelopmental disorders? Neurosci Biobehav Rev. 2018;84:337-51. 10.1016/j.neubiorev.2017.08.013 https://www.sciencedirect.com/science/article/pii/S0149763417302749?via%3Dihub.
10.1016/j.neubiorev.2017.08.013 -
Kenny KS. Mental health harm to mothers when a child is taken by child protective services: Health equity considerations. Can J Psychiatry. 2018;63(5):304-7. 10.1177/0706743717748885 https://journals.sagepub.com/doi/10.1177/0706743717748885.
10.1177/0706743717748885 -
Trombetta T, Giordano M, Santoniccolo F, et al. Pre-natal attachment and parent-to-infant attachment: A systematic review. Front Psychol. 2021;12:1-17. 10.3389/fpsyg.2021.620942 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8011495/.
10.3389/fpsyg.2021.620942 -
Wall-Wieler E, Roos LL, Nickel NC, et al. Mortality among mothers whose children were taken into care by child protection services: A discordant sibling analysis. Am J Epidemiol. 2018;187(6):1182-8. 10.1093/aje/kwy062 https://academic.oup.com/aje/article/187/6/1182/4956003?login=false.
10.1093/aje/kwy062 -
Bedston S, Youansamouth L, Philip G, et al. Fathers, mothers and recurrent care proceedings. In: Socio-Legal Studies Association (SLSA) Annual Conference; 2019.
-
Brown HK, Potvin LA, Lunsky Y, et al. Maternal intellectual or developmental disability and newborn discharge to protective services. Pediatrics. 2018;142(6):e20181416. 10.1542/peds.2018-1416 https://publications.aap.org/pediatrics/article-abstract/142/6/e20181416/37483/Maternal-Intellectual-or-Developmental-Disability?redirectedFrom=fulltext.
10.1542/peds.2018-1416 -
Lin E, Balogh R, Cobigo V, et al. Using administrative health data to identify individuals with intellectual and developmental disabilities: A comparison of algorithms. J Intellect Disabil Res. 2013;57(5):462-77. 10.1111/jir.12002 https://onlinelibrary.wiley.com/doi/10.1111/jir.12002.
10.1111/jir.12002 -
Brown HK, Ray JG, Chen S, et al. Association of preexisting disability with severe maternal morbidity or mortality in Ontario, Canada. JAMA Netw Open. 2021;4(2):e2034993. 10.1001/jamanetworkopen.2020.34993 https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776018.
10.1001/jamanetworkopen.2020.34993 -
Darney BG, Biel FM, Quigley BP, et al. Primary Cesarean delivery patterns among women with physical, sensory, or intellectual disabilities. Womens Health Issues. 2017;27(3):336-44. 10.1016/j.whi.2016.12.007 https://linkinghub.elsevier.com/retrieve/pii/S1049-3867(16)30402-9.
10.1016/j.whi.2016.12.007 -
Muldoon L, Rayner J, Dahrouge S. Patient poverty and workload in primary care: Study of prescription drug benefit recipients in community health centres. Can Fam Physician. 2013;59(4):384-90. https://www.cfp.ca/content/59/4/384.long.
-
Johns Hopkins University. The Johns Hopkins ACG Case-Mix System Applications Guide Version 10.0. Johns Hopkins ACG System. Accessed August 16, 2021. https://www.hopkinsacg.org/documents/system-documentation/.
-
Alexander GR, Kotelchuck M. Quantifying the adequacy of prenatal care: a comparison of indices. Public Health Rep. 1996;111(5):408-19. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1381783/.
-
Ray JG, Park AL, Dzakpasu S, et al. Prevalence of severe maternal morbidity and factors associated with maternal mortality in Ontario, Canada. JAMA Netw Open. 2018;1(7):e184571. 10.1001/jamanetworkopen.2018.4571 https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2713041.
10.1001/jamanetworkopen.2018.4571 -
Jairam JA, Vigod SN, Siddiqi A, et al. Morbidity and mortality of newborns born to immigrant and nonimmigrant females residing in low-income neighbourhoods. Can Med Assoc J. 2023;195(15):E537-47. 10.1503/cmaj.221711 https://www.cmaj.ca/content/195/15/E537.
10.1503/cmaj.221711 -
Austin PC. Using the standardized difference to compare the prevalence of a binary variable between two groups in observational research. Commun Stat - Simul Comput. 2009;38(6):1228-34. 10.1080/03610910902859574 https://www.tandfonline.com/doi/full/10.1080/03610910902859574.
10.1080/03610910902859574 -
Zou G. A Modified Poisson regression approach to prospective studies with binary data. Am J Epidemiol. 2004;159(7):702-6. 10.1093/aje/kwh090 https://academic.oup.com/aje/article/159/7/702/71883?login=false.
10.1093/aje/kwh090 -
Hardin JW. Generalized Estimating Equations (GEE). In: Encyclopedia of Statistics in Behavioral Science. John Wiley & Sons, Ltd; 2005. 10.1002/0470013192.bsa250
10.1002/0470013192.bsa250 -
McConnell D, Feldman M, Aunos M, et al. Parental cognitive impairment and child maltreatment in Canada. Child Abuse Negl. 2011;35(8):621-32. 10.1016/j.chiabu.2011.04.005 https://www.sciencedirect.com/science/article/pii/S0145213411001591?via%3Dihub.
10.1016/j.chiabu.2011.04.005 -
Booth T, Booth W, McConnell D. Care proceedings and parents with learning difficulties: Comparative prevalence and outcomes in an English and Australian court sample. Child Fam Soc Work. 2005;10(4):353-60. 10.1111/j.1365-2206.2005.00378.x https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2206.2005.00378.x.
10.1111/j.1365-2206.2005.00378.x -
Llewellyn G, McConnell D, Ferronato L. Prevalence and outcomes for parents with disabilities and their children in an Australian court sample. Child Abuse Negl. 2003;27(3):235-51. 10.1016/S0145-2134(03)00004-8 https://www.sciencedirect.com/science/article/pii/S0145213403000048?via%3Dihub.
10.1016/S0145-2134(03)00004-8 -
Wall-Wieler E, Roos LL, Brownell M, et al. Predictors of having a first child taken into care at birth: A population-based retrospective cohort study. Child Abuse Negl. 2018;76:1-9. 10.1016/j.chiabu.2017.09.033 https://www.sciencedirect.com/science/article/pii/S0145213417303691?via%3Dihub.
10.1016/j.chiabu.2017.09.033 -
Tarasoff LA, Lunsky Y, Chen S, et al. Preconception health characteristics of women with disabilities in Ontario: A population-based, cross-sectional study. J Womens Health. 2020;29(12):1564-75. 10.1089/jwh.2019.8273 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7757535/.
10.1089/jwh.2019.8273 -
Nishat F, Lunsky Y, Tarasoff LA, et al. Prenatal care adequacy among women with disabilities: A population-based study. Am J Prev Med. 2022;62(1):39-49. 10.1016/j.amepre.2021.05.037 https://www.ajpmonline.org/article/S0749-3797(21)00376-7/abstract.
10.1016/j.amepre.2021.05.037 -
Tarasoff LA, Ravindran S, Malik H, et al. Maternal disability and risk for pregnancy, delivery, and postpartum complications: A systematic review and meta-analysis. Am J Obstet Gynecol. 2020;222(1):27.e1-27.e32. 10.1016/j.ajog.2019.07.015 https://www.ajog.org/article/S0002-9378(19)30899-3/abstract.
10.1016/j.ajog.2019.07.015 -
Bernard S. Parents with learning disabilities - the assessment of parenting ability. Adv Ment Health Learn Disabil. 2007;1(3):14-18. 10.1108/17530180200700026 https://www.emerald.com/insight/content/doi/10.1108/17530180200700026/full/html?skipTracking=true.
10.1108/17530180200700026 -
Pituch E, Bindiu AM, Grondin M, et al. Parenting with a physical disability and cognitive impairments: A scoping review of the needs expressed by parents. Disabil Rehabil. 2022;44(13):3285-300. 10.1080/09638288.2020.1851786 https://www.tandfonline.com/doi/abs/10.1080/09638288.2020.1851786.
10.1080/09638288.2020.1851786 -
McConnell D, Hahn L. Growing up with parents with disabilities. The Encyclopedia of Child and Adolescent Development. 2020. 10.1002/9781119171492.wecad240 https://onlinelibrary.wiley.com/doi/abs/10.1002/9781119171492.wecad240.
10.1002/9781119171492.wecad240 -
Emerson E, Brigham P. The developmental health of children of parents with intellectual disabilities: Cross-sectional study. Res Dev Disabil. 2014;35(4):917-921. 10.1016/j.ridd.2014.01.006 https://www.sciencedirect.com/science/article/abs/pii/S0891422214000109.
10.1016/j.ridd.2014.01.006 -
Barlow J, Simkiss D, Stewart-Brown S. Interventions to prevent or ameliorate child physical abuse and neglect: Findings from a systematic review of reviews. J Child Serv. 2006;1(3):6-28. 10.1108/17466660200600020 https://www.emerald.com/insight/content/doi/10.1108/17466660200600020/full/html.
10.1108/17466660200600020 -
Cox P, Barratt C, Blumenfeld F, et al. Reducing recurrent care proceedings: Initial evidence from new interventions. J Soc Welf Fam Law. 2017;39(3):332-49. 10.1080/09649069.2017.1345083 https://www.tandfonline.com/doi/abs/10.1080/09649069.2017.1345083.
10.1080/09649069.2017.1345083 -
Wilson S, Mckenzie K, Quayle E, Murray G. A systematic review of interventions to promote social support and parenting skills in parents with an intellectual disability. Child Care Health Dev. 2014;40(1):7-19. 10.1111/cch.12023 https://onlinelibrary.wiley.com/doi/10.1111/cch.12023.
10.1111/cch.12023 -
Barlow J, Davis H, McIntosh E, et al. Role of home visiting in improving parenting and health in families at risk of abuse and neglect: Results of a multicentre randomised controlled trial and economic evaluation. Arch Dis Child. 2007;92(3):229-33. 10.1136/adc.2006.095117 https://adc.bmj.com/content/92/3/229.long.
10.1136/adc.2006.095117 -
Llewellyn G, McConnell D, Honey A, et al. Promoting health and home safety for children of parents with intellectual disability: A randomized controlled trial. Res Dev Disabil. 2003;24(6):405-431. 10.1016/j.ridd.2003.06.001 https://www.sciencedirect.com/science/article/pii/S0891422203000702?via%3Dihub
10.1016/j.ridd.2003.06.001 -
Wint AJ, Smith DL, Iezzoni LI. Mothers with physical disability: Child care adaptations at home. Am J Occup Ther. 2016;70(6):7006220060p1-7006220060p7. 10.5014/ajot.2016.021477 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5081697/.
10.5014/ajot.2016.021477 -
Hansen KV. Not-so-nuclear families. Rutgers University Press; 2004. Accessed April 11, 2023. https://www.rutgersuniversitypress.org/not-so-nuclear-families/9780813535012/.
-
Booth T, Booth W. Think of the children: Growing up with parents who have learning difficulties. J Learn Disabil Nurs Health Soc Care. 1998;2(3):138-143. 10.1177/146900479800200304. https://journals.sagepub.com/doi/10.1177/146900479800200304.
10.1177/146900479800200304 -
Antwi-Boasiako K, King B, Fallon B, Trocme N, Fluke J, Chabot M, et al. Differences and disparities over time: Black and White families investigated by Ontario’s child welfare system. Child Abuse Neglect. 2020;107:104618. 10.1016/j.chiabu.2020.104618 https://www.sciencedirect.com/science/article/abs/pii/S0145213420302738.
10.1016/j.chiabu.2020.104618 -
De La Sablonnière-Griffin M, Collin-Vézina D, Esposito T, Dion J. A longitudinal study to better understand child protection intervention for First Nations children. First Peoples Child Family Rev. 2023;18(1):97-120. https://fpcfr.com/index.php/FPCFR/article/view/561.