Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review

Homeyard, Claire; Montgomery, Elsa; Chinn, Deborah; Patelarou, Evridiki

doi:10.1016/j.midw.2015.10.002

Cited by 42 publications

(51 citation statements)

References 39 publications

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“…They might do this covertly, to “keep the peace,” or overtly, exercising their own responsibility as parents. The confidence with which some of these mothers managed their parental role, their choices and their relationships with service providers is very different from the experiences of mothers with learning disabilities reported in earlier research, which has tended to emphasise negative and disempowering experiences 48. It seems that the LD advocacy movement has achieved a great deal in normalising parenthood as a choice for people with learning disabilities, in the 20 years since Brown challenged services to see that women with learning disabilities are “women first” and “mind about the things other women mind about,” including motherhood 49…”

Section: Discussioncontrasting

confidence: 64%

‘We both just wanted to be normal parents’: a qualitative study of the experience of maternity care for women with learning disability

et al. 2017

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BackgroundMore women with learning disability (LD) are becoming mothers. Women with LD have rights to equal access to maternity care that meets their needs, however, many have poor pregnancy and birth outcomes compared to other women in the UK. Research is limited in this area.ObjectivesThe aim of the study was to explore the lived experiences of pregnancy, childbirth, prenatal and postnatal care and services received by this group of women in the UK, including their expressed information and support needs relating to maternity care.MethodsA qualitative study in which data were generated using in-depth semistructured interviews with learning disabled women who were pregnant or had given birth within the last 3 years in the UK; data were analysed using interpretative phenomenological analysis.Results9 women with varying levels of cognitive impairment took part. 4 super-ordinate themes were identified: ‘I hate being treated differently’, ‘I find it harder to understand than other people’, ‘We've had to prove ourselves’ and ‘Make sure you've got very good support around you’. Subthemes included: ‘Negative attitudes and denial of choice’, ‘Understanding of normal care’, ‘Written information’ and ‘Being judged by professionals’.ConclusionsWith support from family and services, learning disabled women can become confident and successful parents. Maternity services should make reasonable adjustments when providing care to this group, including adapting to their individual communication and learning needs: allowing sufficient time in appointments, offering clear explanations of each aspect of care and sensitive support for autonomy and fully informed choice. Mothers who will be subject to a social care assessment of their parenting skills need clear information about the process, their choices and the level of skill they must demonstrate, as well as access to sufficient antenatal and postnatal support to give them the best possible chance of passing the assessment.

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Section: Discussioncontrasting

confidence: 64%

‘We both just wanted to be normal parents’: a qualitative study of the experience of maternity care for women with learning disability

et al. 2017

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“…Increased smoking may be related to a lack of understanding of adverse effects of prenatal smoking, or possibly to smoking as a means to reduce increased stress levels reported by this population (22,29). Women with ID may be younger at delivery due to lack of contraception information or access to routine health care (5)(6)(7)30), or inability to comprehend health recommendations as they are routinely provided (10). Unlike some other studies (9, 11, 31), we did not observe greater obesity in women with ID.…”

Section: Discussionmentioning

confidence: 99%

“…We also observed increased preeclampsia, consistent with some (14, 32), but not all (12) studies of women with ID or IDD that have examined this. Both gestational diabetes and preeclampsia require close monitoring and may require medication or dietary changes during pregnancy; given that prenatal educational tools are often inadequate for women with ID who may have difficulty comprehending or responding to care instructions as routinely presented (10), effective communication during pregnancy between a woman, her family, and those supporting her care is critical.…”

Section: Discussionmentioning

confidence: 99%

“…Self-awareness and monitoring of symptoms and signs (e.g. contractions) that motivate the seeking of care during pregnancy may be less present among women with ID, who often struggle to understand information provided during antenatal care (10). Obesity (11) and cigarette smoking (9, 12) may be more common in persons with ID, with potentially adverse consequences for the course of pregnancy in women with ID and their infants' health.…”

Section: Introductionmentioning

confidence: 99%

“…Obesity (11) and cigarette smoking (9, 12) may be more common in persons with ID, with potentially adverse consequences for the course of pregnancy in women with ID and their infants' health. Finally, providers often lack training in how to care for women with ID or relevant tools (e.g., visual teaching aids vs. text-based leaflets), and women may face systematic negative bias towards their pregnancies from clinicians or family (10).…”

Section: Introductionmentioning

confidence: 99%

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Pregnancy course, infant outcomes, rehospitalization, and mortality among women with intellectual disability

Mueller

Crane

Doody

et al. 2019

Disability and Health Journal

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Background: Pregnant women with intellectual disability (ID) may have greater levels of comorbidity and decreased care access, social support, or ability to monitor their status and communicate needs, but few studies have examined their pregnancy course and outcome, and little is known about their longer-term maternal and infant health. Objective: We compared pre-pregnancy characteristics, pregnancy outcomes, and rehospitalization <2 years after delivery among women with and without ID. Method: We identified all women with ID and randomly selected a 10:1 comparison group of women without ID with singleton live birth deliveries in Washington State population-based linked birth-hospital discharge data 1987-2012. Multivariable regressions estimated adjusted odds ratios comparing pre-pregnancy characteristics. In cohort analyses, we estimated relative risks (RR) and 95% confidence intervals (CI) for outcomes. Results: Women with ID (N=103) more often had gestational diabetes (RR 3.39, 95% CI 1.81-6.37), preeclampsia (RR 1.88, 95% CI 1.03-3.42), and inadequate prenatal care (RR 2.48, 95% CI 1.67-3.70). Their infants more often were small for gestational age (RR 1.78, 95% CI 1.10-2.89). Need for rehospitalization postpartum was not increased among women with ID or their infants. Conclusion: Reasons for increased preeclampsia and gestational diabetes among pregnant women with ID are unclear. Barriers to inadequate prenatal care are multifactorial and warrant

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Comparison of Emergency Department Use Between Pregnant People With and Without Disabilities in Ontario, Canada

et al. 2023

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ImportanceEmergency department (ED) use in pregnancy is common and occurs for a variety of reasons, including obstetrical complications, exacerbated underlying conditions, and inadequate outpatient health care access. People with disabilities have elevated rates of certain medical, psychiatric, and obstetrical conditions as well as inadequate access to prenatal care; their risk of ED use in pregnancy is not known, however.ObjectiveTo compare the risk of ED use in pregnancy among people with physical, sensory, and intellectual or developmental disabilities with those without disabilities.Design, Setting, and ParticipantsPopulation-based cohort study leveraging linked administrative health data sets in Ontario, Canada, April 2003 to March 2019. Analysis included all recognized pregnancies to people with a preexisting physical, sensory, intellectual or developmental, or 2 or more (multiple) disabilities, and those without a disability. Data were analyzed from May 2022 to January 2023.ExposureDisability was ascertained using algorithms applied to 2 or more outpatient physician visits or 1 or more ED visits or hospitalizations before conception.Main outcomes and measuresModified Poisson regression–generated adjusted relative risks (aRR) and 95% CIs for any ED visit in pregnancy, from the estimated conception date up to the end of the pregnancy, adjusted for age, parity, income quintile, rurality, immigrant status, and preexisting chronic conditions, mental illness, and substance use disorders.ResultsThe cohort included 2 659 895 pregnant people with physical (221 739 participants; mean [SD] age, 29.8 [6.1] years), sensory (71 891 participants; mean [SD] age, 29.1 [6.4] years), intellectual or developmental (3877 participants; mean [SD] age, 26.1 [6.7] years), and multiple disabilities (14 359 participants; mean [SD] age, 29.5 [6.5] years), and pregnant people without a disability (2 348 023 participants; mean [SD] age, 29.4 [5.9] years). The rate of ED visits in pregnancy was 25.4% in people without a disability (596 771 visits). Relative to these individuals, the aRR for ED use was elevated in people with physical (aRR, 1.26; 95% CI, 1.25-1.27), sensory (aRR, 1.15; 95% CI, 1.14-1.17), intellectual or developmental (aRR, 1.33; 95% CI, 1.28-1.38), and multiple disabilities (aRR, 1.43; 95% CI, 1.40-1.46).Conclusions and RelevanceIn this population-based study, people with disabilities were at elevated risk of ED use in pregnancy. This finding underscores the need for research on the benefits of proactive strategies to manage preexisting conditions in these individuals, improve their access to outpatient obstetrical and medical care, and prepare them for when ED visits occur.

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Current evidence on antenatal care provision for women with intellectual disabilities: A systematic review

Cited by 42 publications

References 39 publications

‘We both just wanted to be normal parents’: a qualitative study of the experience of maternity care for women with learning disability

‘We both just wanted to be normal parents’: a qualitative study of the experience of maternity care for women with learning disability

Pregnancy course, infant outcomes, rehospitalization, and mortality among women with intellectual disability

Comparison of Emergency Department Use Between Pregnant People With and Without Disabilities in Ontario, Canada

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