Abstract
Purpose:
To examine the risk of perinatal mental illness, including new-onset disorders and recurrent or ongoing use of mental health care, comparing women with physical, sensory, intellectual/developmental, and multiple disabilities to those without a disability.
Methods:
From all women aged 15-49 years with a singleton birth in Ontario, Canada (2003-2018), those with physical (n=144,972), sensory (n=45,249), intellectual/developmental (n=2,227), and ≥2 of these disabilities (“multiple disabilities”; n=8,883), were compared to 1,601,363 without a disability on risk of healthcare system contact for mental illness from conception to 365 days postpartum. The cohort was stratified into: (1) no pre-pregnancy mental illness (to identify new-onset illness), (2) distal mental illness (>2 years pre-pregnancy, to identify recurrent illness), and (3) recent mental illness (0-2 years pre-pregnancy, to identify ongoing contact). Modified Poisson regression generated relative risks (aRR), adjusted for age, parity, income quintile, and rural residence.
Results:
About 14.7%, 26.5%, and 56.6% of women with no disabilities had new-onset, recurrent, and ongoing contact for mental illness, respectively, perinatally. Risks were elevated across disability groups for new-onset (physical: aRR 1.18, 95% CI 1.16-1.20; sensory: 1.11, 1.08-1.15; intellectual/developmental: 1.38, 1.17-1.62; multiple: 1.24, 1.15-1.33), recurrent (physical: 1.10, 1.08-1.12; sensory 1.06, 1.02-1.09; intellectual/developmental: 1.24, 1.11-1.37; multiple: 1.16, 1.09-1.23), and ongoing contact (physical: 1.09, 1.08-1.10; sensory: 1.08, 1.06-1.10; intellectual/developmental: 1.31, 1.26-1.37; multiple: 1.20, 1.16-1.23).
Conclusion:
The heightened use of new, recurrent, and ongoing mental health care across disability groups in the perinatal period suggests that adapted screening and intervention approaches are critical to optimize perinatal mental health in this population.
Keywords: Disability, mental health, pregnancy, postpartum period
INTRODUCTION
One in five women experience mental illness in pregnancy or during the postpartum period [1]. Women with perinatal mental illness experience difficulty coping and problems with relationships, and are at elevated risk of suicidal ideation and chronic mental illness; their infants are at increased risk of fetal growth restriction, preterm birth, developmental delay, and social and behavioural problems [2,3]. Yet, only one-third of women with perinatal mental illness receive psychiatric care [4]. A prior history of mental illness, low social support, and acute stress are the strongest predictors of perinatal mental illness [5,6]. While women with disabilities experience these risk factors at elevated rates [7,8], few studies have examined their risk of perinatal mental illness. Such research would inform prevention and treatment programs.
Disability is common in women of childbearing age, reported by nearly 15% of 15 to 49-year-olds [9] and affecting physical, sensory, and intellectual/developmental domains. Adults with disabilities, and particularly women, are at higher risk of mental illness than those without a disability [10,11]. Pregnancy rates in women with disabilities are rising [12,13]. As pregnancy is a major life transition, and women with disabilities are at elevated risk of maternal and neonatal medical complications [14,15], the perinatal period may be a time of particular vulnerability for mental illness in this group. Qualitative and clinical studies show high levels of psychological distress in pregnancy and during the postpartum period among women with disabilities [16,17]. Two population-based studies suggest disabled women are more likely than other women to develop postpartum mental illness [18,19]. Further population-based research is needed to examine risks of mental illness across the perinatal period in women with disabilities, including risks of a broad spectrum of psychiatric diagnoses and severe events, such as psychiatric hospital admissions and self-harm/suicide. It is also important to understand how risk for perinatal mental illness varies across different disability groups. Such data are critical for planning effectively targeted mental health supports for women with disabilities across the perinatal period.
Our objective was to examine the risk of healthcare contacts for perinatal mental illness, including for new-onset disorders, recurrent disorders, and ongoing mental health contact, among women with physical, sensory, intellectual/developmental, and multiple disabilities compared to women without a disability.
METHODS
Study design and data sources
In this population-based cohort study, we used province-wide health administrative data derived from health care encounters of residents of Ontario, Canada. Under Ontario’s universal health care plan, residents receive all essential health care services, including mental health and addictions care with a physician, at no out-of-pocket cost. Data were accessed and analyzed at ICES, a non-profit research organization whose use of health administrative data is authorized under section 45 of Ontario’s Personal Health Information Protection Act. Obstetrical delivery records were identified in the MOMBABY dataset, which covers all hospital deliveries (98% of Ontario births) [20]. These records were linked using a unique, encoded identifier with sociodemographics, outpatient physician visits, emergency department visits, hospital admissions, and deaths. These data have been shown to have good accuracy and completeness (Table S1) [21].
Measures
The cohort included all 15 to 49-year-olds with a singleton obstetrical delivery conceived between April 1, 2003 and March 31, 2018. Disability was measured by applying algorithms developed to ascertain disability in health administrative data [22,23] (details reported elsewhere [24]). A disability was deemed present if a diagnostic code for a physical disability (congenital anomaly, musculoskeletal disorder, neurological disorder, permanent injury), sensory disability (hearing loss, vision loss), intellectual/developmental disability (autism spectrum disorder, chromosomal anomalies resulting in intellectual disability, fetal alcohol spectrum disorder, other intellectual disability etiology), or ≥ 2 of these (multiple disabilities) was found in ≥ 2 physician visits, ≥ 1 emergency department visits, or ≥ 1 hospital admissions before conception [25]. The referent group comprised those without a recorded disability.
One of the strongest predictors of perinatal mental illness is a history of mental illness [6], and mental illness is more common among women with disabilities compared to those without disabilities [10]. As such, the cohort was a priori divided into 3 strata: (1) those with no history of pre-pregnancy mental illness (to identify new-onset mental illness), (2) those with a history of mental illness distal to the pregnancy (defined as > 2 years pre-pregnancy, to identify recurrent illness), and (3) those with very recent or ongoing mental illness at the onset of pregnancy (defined as 0-2 years pre-pregnancy, to identify ongoing contact). Pre-pregnancy history of mental illness required either ≥ 2 physician visits for a mental health reason within 2 years of each other during the lookback period, or ≥ 1 psychiatric emergency department visits or hospital admissions during the same time period. For use as a covariate in additional analyses, the severity of history of mental illness was also categorised as follows: no history of pre-pregnancy mental illness, outpatient psychiatric care only, or acute psychiatric care (emergency department visits or hospital admissions, with or without additional outpatient psychiatric care).
The primary outcome was health system contact for perinatal mental illness, defined as ≥ 1 visits to a general practitioner or psychiatrist with a mental illness diagnosis, ≥ 1 psychiatric emergency department visits, ≥ 1 psychiatric hospital admissions, and/or ≥ 1 self-harm/suicide events, between conception and up to 365 days postpartum. Outcomes were also examined by (a) timing (i.e., prenatal mental illness, first occurring in pregnancy; or postpartum mental illness, first occurring within 365 days of delivery), (b) diagnosis (i.e., a mood or anxiety disorder, psychotic disorder, substance use disorder, or other mental disorder), and (c) severity of the outcome. First, we classified severity in terms of the setting of presentation, from least to most severe: (1) if the individual only had outpatient visits; (2) if the individual had a psychiatric emergency department visit but this did not result in hospital admission; and (3) if the individual had a psychiatric hospitalization. For those who presented to the emergency department or required psychiatric hospitalization, we were also able to determine whether there was evidence of intentional self-injury at the time of presentation. As such, we also examined a severity variable combining intentional self-injury on presentation to acute care, and death by suicide (identified using the Ontario Register General Database) [26,27] (Table S2).
Covariates were maternal age, parity, neighbourhood income quintile, and rural residence. We derived neighbourhood income quintile by linking residential postal codes with Census dissemination area data on median family income. Rurality was ascertained using the Rurality Index of Ontario, which uses 10 indicators, such as travel time to different levels of care, to categorize neighbourhoods as rural or urban [28].
Data analyses
Baseline characteristics of women with and without disabilities were described using frequencies and proportions. Standardized differences were estimated with a value > 0.10 showing meaningful imbalance [29]. Within pre-pregnancy history of mental illness strata (none, distal, recent), unadjusted and adjusted relative risks (aRR), and 95% confidence intervals (CI), were generated using modified Poisson regression to compare the risk of perinatal mental illness in women with physical, sensory, intellectual/developmental, and multiple disabilities, to those without a disability [30]. We used generalized estimating equations to account for clustering of multiple births to the same mother during the study period [31]. Multivariable models included maternal age, parity, neighbourhood income, and rural residence.
In additional analyses, we examined the association between maternal disability and perinatal mental illness by (a) timing, (b) diagnosis, and (c) severity of perinatal mental illness. We also examined the relationships between maternal disability and perinatal mental illness in women with no history of mental illness, a history of outpatient psychiatric care only, and a history of acute psychiatric care. We explored the relationship between maternal disability and perinatal mental illness by disability type subgroup. Finally, we used a stricter definition of the outcome, wherein we required ≥ 2 physician visits for perinatal mental illness instead of ≥ 1.
All data analyses used SAS version 9.4.
RESULTS
Cohort characteristics
There were 144,972 women with a physical disability, 45,249 with a sensory disability, 2,227 with an intellectual/developmental disability, and 8,883 with multiple disabilities, along with 1,601,363 women without disabilities, all with a singleton obstetrical delivery. Recent and distal histories of pre-pregnancy mental illness were more common among women with physical (24.1%, 30.7%), sensory (20.9%, 27.7%), intellectual/developmental (43.9%, 30.0%), and multiple disabilities (31.8%, 31.9%) compared to those without disabilities (15.6%, 21.1%), respectively. Across strata, women with sensory, intellectual/developmental, and multiple disabilities were younger, and those with intellectual/developmental disabilities were more likely to live in low-income neighbourhoods, compared to women without disabilities (Table 1).
Table 1. Baseline characteristics of 15 to 49-year-old women with a physical, sensory, or intellectual/developmental disability or multiple disabilities, or no such disability, who had a singleton birth in Ontario, Canada, 2003-2018.
Data presented as a number (%).
| Physical disability only | Sensory disability only | Intellectual/developmental disability only | Multiple disabilities | No disability | |
|---|---|---|---|---|---|
| No history of mental illness | N=65,525 | N=23,237 | N=582 | N=3,221 | N=1,014,512 |
| Age, years | |||||
| 15-24 | 12,307 (18.8) | 5,473 (23.6)a | 222 (38.1)a | 809 (25.1)a | 176,259 (17.4) |
| 25-34 | 41,797 (63.8) | 13,861 (59.7)a | 279 (47.9)a | 1,849 (57.4)a | 667,703 (65.8) |
| 35-49 | 11,421 (17.4) | 3,903 (16.8) | 81 (13.9)a | 563 (17.5) | 170,550 (16.8) |
| Multiparous | 35,400 (54.0) | 11,904 (51.2) | 320 (55.0) | 1,637 (50.8) | 558,658 (55.1) |
| Rural residence | 3,891 (5.9) | 1,029 (4.4) | 24 (4.1) | 212 (6.6)a | 40,816 (4.0) |
| Lowest neighbourhood income quintile | 12,682 (19.4) | 4,878 (21.0) | 184 (31.6)a | 697 (21.6) | 222,417 (21.9) |
| Distal history of mental illness | N=44,448 | N=12,539 | N=668 | N=2,833 | N=337,768 |
| Age, years | |||||
| 15-24 | 5,957 (13.4) | 2,281 (18.2)a | 280 (41.9)a | 514 (18.1)a | 48,376 (14.3) |
| 25-34 | 27,712 (62.3) | 7,427 (59.2) | 285 (42.7)a | 1,634 (57.7)a | 215,592 (63.8) |
| 35-49 | 10,779 (24.3) | 2,831 (22.6) | 103 (15.4)a | 685 (24.2) | 73,800 (21.8) |
| Multiparous | 27,875 (62.7) | 7,444 (59.4) | 398 (59.6) | 1,710 (60.4) | 209,142 (61.9) |
| Rural residence | 2,506 (5.6) | 560 (4.5) | 37 (5.5) | 141 (5.0) | 15,011 (4.4) |
| Lowest neighbourhood income quintile | 9,275 (20.9) | 2,680 (21.4) | 238 (35.6)a | 692 (24.4) | 69,679 (20.6) |
| Recent history of mental illness | N=34,999 | N=9,473 | N=977 | N=2,829 | N=249,083 |
| Age, years | |||||
| 15-24 | 7,716 (22.0) | 2,807 (29.6)a | 504 (51.6)a | 855 (30.2)a | 58,482 (23.5) |
| 25-34 | 19,970 (57.1) | 4,850 (51.2)a | 387 (39.6)a | 1,452 (51.3)a | 145,923 (58.6) |
| 35-49 | 7,313 (20.9) | 1,816 (19.2) | 86 (8.8)a | 522 (18.5)a | 44,678 (17.9) |
| Multiparous | 21,117 (60.3) | 5,252 (55.4) | 537 (55.0) | 1,615 (57.1) | 146,419 (58.8) |
| Rural residence | 1,884 (5.4) | 425 (4.5) | 52 (5.3) | 146 (5.2) | 11,199 (4.5) |
| Lowest neighbourhood income quintile | 9,066 (25.9) | 2,493 (26.3) | 415 (42.5)a | 914 (32.3)a | 61,409 (24.7) |
An important standardized difference of > 0.10 was seen when this group was compared to the group with no disability.
Study outcomes
New-onset mental illness.
Among women with no pre-pregnancy history of mental illness, those with physical (17.3%; aRR 1.18, 95% CI 1.16-1.20), sensory (16.7%, aRR 1.11, 95% CI 1.08-1.15), intellectual/developmental (21.5%; aRR 1.38, 95% CI 1.17-1.62), and multiple disabilities (18.6%; aRR 1.24, 95% CI 1.15-1.33) had increased risk of new-onset mental illness in the perinatal period, compared to women without a disability (14.7%) (Table 2). This increased risk was sustained for pregnancy and postpartum time periods individually (Table 3); for mood and anxiety disorder diagnoses (Table 4); and for contacts with outpatient care and the emergency department (Table 5).
Table 2. Risk of perinatal mental illness arising between conception and up to 365 days postpartum, in relation to maternal disability status.
Data are stratified for women with no history of mental illness, a distal history of mental illness, and a recent history of mental illness.
| Disability type | Among women without a history of mental illness | Among women with a distal history of mental illness | Among women with a recent history of mental illness | ||||||
|---|---|---|---|---|---|---|---|---|---|
| Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | |
| No disability | 149,107 (14.7) | 1.00 (Referent) | 1.00 (Referent) | 89,368 (26.5) | 1.00 (Referent) | 1.00 (Referent) | 140,903 (56.6) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 11,332 (17.3) | 1.18 (1.16-1.20) | 1.18 (1.16-1.20) | 12,848 (28.9) | 1.09 (1.07-1.11) | 1.10 (1.08-1.12) | 21,645 (61.8) | 1.09 (1.08-1.10) | 1.09 (1.08-1.10) |
| Sensory only | 3,876 (16.7) | 1.14 (1.10-1.17) | 1.11 (1.08-1.15) | 3,544 (28.3) | 1.07 (1.03-1.10) | 1.06 (1.02-1.09) | 5,796 (61.2) | 1.08 (1.06-1.10) | 1.08 (1.06-1.10) |
| Intellectual/developmental only | 125 (21.5) | 1.46 (1.24-1.72) | 1.38 (1.17-1.62) | 235 (35.2) | 1.31 (1.18-1.46) | 1.24 (1.11-1.37) | 723 (74.0) | 1.31 (1.26-1.36) | 1.31 (1.26-1.37) |
| Multiple disabilities | 599 (18.6) | 1.27 (1.18-1.37) | 1.24 (1.15-1.33) | 885 (31.2) | 1.18 (1.11-1.25) | 1.16 (1.09-1.23) | 1,917 (67.8) | 1.20 (1.16-1.23) | 1.20 (1.16-1.23) |
Adjusted for maternal age, parity, rural residence, and neighbourhood income quintile
Table 3. Risk of perinatal mental illness arising between conception and up to 365 days postpartum, in relation to maternal disability status, presented by the timing of onset of the mental illness.
Data are stratified for women with no history of mental illness, a distal history of mental illness, and a recent history of mental illness.
| Disability type | Among women without a history of mental illness | Among women with a distal history of mental illness | Among women with a recent history of mental illness | ||||||
|---|---|---|---|---|---|---|---|---|---|
| Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | |
| Prenatal mental illness | |||||||||
| No disability | 60,542 (6.0) | 1.00 (Referent) | 1.00 (Referent) | 36,558 (10.8) | 1.00 (Referent) | 1.00 (Referent) | 84,563 (33.9) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 4,329 (6.6) | 1.11 (1.08-1.14) | 1.12 (1.09-1.15) | 5,127 (11.5) | 1.07 (1.04-1.10) | 1.07 (1.04-1.10) | 13,402 (38.3) | 1.13 (1.11-1.15) | 1.12 (1.11-1.14) |
| Sensory only | 1,484 (6.4) | 1.07 (1.02-1.13) | 1.05 (1.00-1.11) | 1,408 (11.2) | 1.04 (0.99-1.09) | 1.03 (0.98-1.08) | 3,465 (36.6) | 1.08 (1.05-1.11) | 1.08 (1.05-1.11) |
| Intellectual/developmental only | 44 (7.6) | 1.27 (0.95-1.69) | 1.22 (0.92-1.63) | 95 (14.2) | 1.32 (1.09-1.59) | 1.26 (1.04-1.52) | 468 (47.9) | 1.43 (1.34-1.54) | 1.49 (1.39-1.59) |
| Multiple disabilities | 227 (7.0) | 1.18 (1.05-1.34) | 1.17 (1.03-1.32) | 333 (11.8) | 1.09 (0.98-1.21) | 1.07 (0.96-1.19) | 1,218 (43.1) | 1.27 (1.21-1.33) | 1.27 (1.21-1.33) |
| Postpartum mental illness | |||||||||
| No disability | 88,565 (9.3) | 1.00 (Referent) | 1.00 (Referent) | 52,810 (17.5) | 1.00 (Referent) | 1.00 (Referent) | 56,340 (16.3) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 7,003 (11.4) | 1.23 (1.20-1.26) | 1.23 (1.20-1.26) | 7,721 (19.6) | 1.12 (1.10-1.15) | 1.13 (1.11-1.16) | 8,243 (18.5) | 1.14 (1.11-1.16) | 1.14 (1.12-1.17) |
| Sensory only | 2,392 (11.0) | 1.15 (1.11-1.20) | 1.18 (1.14-1.23) | 2,136 (19.2) | 1.09 (1.05-1.14) | 1.08 (1.04-1.12) | 2,331 (18.9) | 1.16 (1.11-1.20) | 1.15 (1.11-1.20) |
| Intellectual/developmental only | 81 (15.1) | 1.51 (1.23-1.85) | 1.62 (1.32-1.98) | 140 (24.4) | 1.38 (1.19-1.59) | 1.27 (1.10-1.47) | 255 (22.8) | 1.38 (1.24-1.55) | 1.29 (1.16-1.45) |
| Multiple disabilities | 372 (12.4) | 1.29 (1.17-1.42) | 1.34 (1.22-1.48) | 552 (22.1) | 1.26 (1.17-1.35) | 1.23 (1.14-1.33) | 699 (20.6) | 1.27 (1.19-1.36) | 1.27 (1.18-1.36) |
Adjusted for maternal age, parity, rural residence, and neighbourhood income quintile
Table 4. Risk of perinatal mental illness arising between conception and up to 365 days postpartum, in relation to maternal disability status, presented by the mental illness diagnosis.
Data are stratified for women with no history of mental illness, a distal history of mental illness, and a recent history of mental illness.
| Disability type | Among women without a history of mental illness | Among women with a distal history of mental illness | Among women with a recent history of mental illness | ||||||
|---|---|---|---|---|---|---|---|---|---|
| Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | |
| Mood or anxiety disorder | |||||||||
| No disability | 145,028 (14.3) | 1.00 (Referent) | 1.00 (Referent) | 86,581 (25.6) | 1.00 (Referent) | 1.00 (Referent) | 135,834 (54.5) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 10,956 (16.7) | 1.17 (1.15-1.19) | 1.17 (1.15-1.20) | 12,338 (27.8) | 1.08 (1.06-1.10) | 1.09 (1.07-1.11) | 20,658 (59.0) | 1.08 (1.07-1.09) | 1.08 (1.07-1.09) |
| Sensory only | 3,769 (16.2) | 1.14 (1.10-1.17) | 1.11 (1.08-1.15) | 3,426 (27.3) | 1.06 (1.03-1.10) | 1.05 (1.02-1.09) | 5,595 (59.1) | 1.08 (1.06-1.10) | 1.08 (1.06-1.10) |
| Intellectual/developmental only | 121 (20.8) | 1.45 (1.23-1.72) | 1.38 (1.17-1.63) | 215 (32.2) | 1.24 (1.11-1.39) | 1.18 (1.05-1.32) | 694 (71.0) | 1.30 (1.25-1.36) | 1.32 (1.26-1.38) |
| Multiple disabilities | 572 (17.8) | 1.25 (1.16-1.35) | 1.22 (1.13-1.31) | 841 (29.7) | 1.16 (1.09-1.22) | 1.13 (1.07-1.20) | 1,826 (64.5) | 1.18 (1.15-1.22) | 1.19 (1.15-1.22) |
| Psychotic disorder | |||||||||
| No disability | 669 (0.1) | 1.00 (Referent) | 1.00 (Referent) | 496 (0.1) | 1.00 (Referent) | 1.00 (Referent) | 2,504 (1.0) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 48 (0.1) | b | b | 72 (0.2) | 1.10 (0.86-1.41) | 1.10 (0.86-1.42) | 480 (1.4) | 1.30 (1.17-1.45) | 1.28 (1.15-1.43) |
| Sensory only | 18 (0.1) | b | b | 29 (0.2) | 1.57 (1.07-2.30) | 1.57 (1.07-2.30) | 121 (1.3) | 1.19 (0.97-1.46) | 1.13 (0.92-1.40) |
| Intellectual/developmental only | 0 (0.0) | b | b | 9 (1.3) | 9.14 (4.75-17.56) | 7.35 (3.78-14.29) | 72 (7.4) | 7.30 (5.60-9.51) | 6.26 (4.76-8.24) |
| Multiple disabilities | 7 (0.2) | b | b | 7 (0.2) | 1.68 (0.79-3.54) | 1.65 (0.78-3.48) | 98 (3.5) | 3.24 (2.59-4.06) | 3.15 (2.51-3.94) |
| Substance use disorder | |||||||||
| No disability | 2,574 (0.3) | 1.00 (Referent) | 1.00 (Referent) | 2,703 (0.8) | 1.00 (Referent) | 1.00 (Referent) | 8,544 (3.4) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 280 (0.4) | 1.68 (1.48-1.91) | 1.68 (1.47-1.92) | 499 (1.1) | 1.41 (1.27-1.55) | 1.52 (1.37-1.68) | 1,951 (5.6) | 1.61 (1.45-1.79) | 1.71 (1.60-1.84) |
| Sensory only | 69 (0.3) | 1.19 (0.93-1.51) | 1.08 (0.84-1.39) | 103 (0.8) | 1.01 (0.82-1.24) | 0.93 (0.75-1.16) | 350 (3.7) | 1.14 (0.94-1.38) | 1.07 (0.93-1.23) |
| Intellectual/developmental only | < 6c | c | c | 12 (1.8) | 2.23 (1.27-3.91) | 1.23 (0.66-2.28) | 88 (9.0) | 2.57 (1.56-4.24) | 2.27 (1.68-3.07) |
| Multiple disabilities | 17 (0.5) | 2.06 (1.25-3.39) | 1.39 (0.76-2.54) | 44 (1.6) | 1.98 (1.47-2.67) | 1.94 (1.42-2.65) | 223 (7.9) | 2.27 (1.65-3.11) | 2.31 (1.92-2.79) |
| Other mental disorder | |||||||||
| No disability | 3,144 (0.3) | 1.00 (Referent) | 1.00 (Referent) | 1,905 (0.6) | 1.00 (Referent) | 1.00 (Referent) | 5,043 (2.0) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 243 (0.4) | 1.20 (1.05-1.36) | 1.21 (1.06-1.39) | 305 (0.7) | 1.22 (1.08-1.38) | 1.26 (1.11-1.43) | 1,042 (3.0) | 1.47 (1.37-1.57) | 1.51 (1.40-1.62) |
| Sensory only | 90 (0.4) | 1.25 (1.01-1.55) | 1.23 (0.99-1.53) | 91 (0.7) | 1.29 (1.04-1.59) | 1.31 (1.06-1.61) | 233 (2.5) | 1.21 (1.05-1.39) | 1.16 (1.01-1.33) |
| Intellectual/developmental only | < 6c | c | c | 15 (2.2) | 3.99 (2.42-6.59) | 3.28 (1.99-5.43) | 110 (11.3) | 5.52 (4.52-6.75) | 4.42 (3.60-5.41) |
| Multiple disabilities | 10 (0.3) | 1.01 (0.52-1.98) | 0.89 (0.44-1.82) | 30 (1.1) | 1.87 (1.30-2.67) | 1.83 (1.27-2.64) | 166 (5.9) | 2.66 (2.22-3.18) | 2.62 (2.20-3.12) |
Adjusted for maternal age, parity, rural residence, and neighbourhood income quintile
Model did not converge due to 0 cell in intellectual/developmental disability group
<6 = findings suppressed to protect patient identities
Table 5. Risk of perinatal mental illness arising between conception and up to 365 days postpartum, in relation to maternal disability status, presented by the severity of mental illness.
Data are stratified for women with no history of mental illness, a distal history of mental illness, and a recent history of mental illness.
| Disability type | Among women without a history of mental illness | Among women with a distal history of mental illness | Among women with a recent history of mental illness | ||||||
|---|---|---|---|---|---|---|---|---|---|
| Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | Number (%) with outcome | Unadjusted RR (95% CI) | Adjusted RR (95% CI)a | |
| Outpatient mental health visit | |||||||||
| No disability | 146,132 (14.4) | 1.00 (Referent) | 1.00 (Referent) | 87,529 (25.9) | 1.00 (Referent) | 1.00 (Referent) | 138,929 (55.8) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 11,082 (16.9) | 1.18 (1.15-1.20) | 1.18 (1.16-1.20) | 12,535 (28.2) | 1.09 (1.07-1.11) | 1.10 (1.08-1.11) | 21,258 (60.7) | 1.09 (1.08-1.10) | 1.09 (1.08-1.10) |
| Sensory only | 3,772 (16.2) | 1.13 (1.09-1.16) | 1.10 (1.07-1.14) | 3,458 (27.6) | 1.06 (1.03-1.09) | 1.05 (1.02-1.08) | 5,705 (60.2) | 1.08 (1.06-1.10) | 1.08 (1.06-1.10) |
| Intellectual/developmental only | 120 (20.6) | 1.43 (1.20-1.69) | 1.37 (1.16-1.62) | 219 (32.8) | 1.25 (1.12-1.40) | 1.19 (1.06-1.33) | 690 (70.6) | 1.27 (1.21-1.33) | 1.28 (1.23-1.34) |
| Multiple disabilities | 574 (17.8) | 1.24 (1.15-1.34) | 1.21 (1.13-1.31) | 852 (30.1) | 1.16 (1.09-1.23) | 1.14 (1.08-1.21) | 1,858 (65.7) | 1.18 (1.14-1.21) | 1.18 (1.15-1.21) |
| Psychiatric emergency department visit without hospital admission | |||||||||
| No disability | 7,144 (0.7) | 1.00 (Referent) | 1.00 (Referent) | 5,159 (1.5) | 1.00 (Referent) | 1.00 (Referent) | 11,778 (4.7) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 617 (0.9) | 1.34 (1.23-1.45) | 1.30 (1.20-1.42) | 875 (2.0) | 1.29 (1.20-1.38) | 1.31 (1.21-1.41) | 2,409 (6.9) | 1.43 (1.37-1.50) | 1.48 (1.42-1.55) |
| Sensory only | 243 (1.0) | 1.49 (1.31-1.69) | 1.36 (1.19-1.54) | 238 (1.9) | 1.24 (1.09-1.41) | 1.17 (1.02-1.34) | 555 (5.9) | 1.23 (1.13-1.35) | 1.18 (1.08-1.29) |
| Intellectual/developmental only | 20 (3.4) | 4.87 (3.10-7.63) | 3.25 (2.06-5.13) | 44 (6.6) | 4.32 (3.22-5.79) | 2.79 (2.06-3.77) | 244 (25.0) | 5.13 (4.48-5.87) | 3.75 (3.29-4.29) |
| Multiple disabilities | 46 (1.4) | 2.02 (1.50-2.72) | 1.66 (1.22-2.27) | 85 (3.0) | 1.94 (1.56-2.41) | 1.76 (1.41-2.19) | 372 (13.1) | 2.59 (2.31-2.91) | 2.54 (2.28-2.84) |
| Psychiatric hospital admission | |||||||||
| No disability | 1,345 (0.1) | 1.00 (Referent) | 1.00 (Referent) | 1,065 (0.3) | 1.00 (Referent) | 1.00 (Referent) | 3,612 (1.5) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 110 (0.2) | 1.27 (1.04-1.55) | 1.23 (1.00-1.50) | 171 (0.4) | 1.22 (1.04-1.44) | 1.23 (1.04-1.46) | 753 (2.2) | 1.45 (1.33-1.58) | 1.49 (1.36-1.62) |
| Sensory only | 40 (0.2) | 1.30 (0.95-1.78) | 1.24 (0.91-1.70) | 55 (0.4) | 1.39 (1.06-1.83) | 1.37 (1.03-1.81) | 177 (1.9) | 1.27 (1.08-1.49) | 1.21 (1.03-1.43) |
| Intellectual/developmental only | < 6b | b | b | 12 (1.8) | 5.78 (3.28-10.17) | 4.24 (2.38-7.55) | 119 (12.2) | 8.04 (6.55-9.86) | 6.24 (5.10-7.65) |
| Multiple disabilities | 10 (0.3) | 2.33 (1.19-4.58) | 1.96 (0.96-4.03) | 22 (0.8) | 2.42 (1.59-3.68) | 2.45 (1.61-3.73) | 157 (5.5) | 3.39 (2.80-4.09) | 3.31 (2.75-3.98) |
| Self-harm or suicide | |||||||||
| No disability | 693 (0.1) | 1.00 (Referent) | 1.00 (Referent) | 432 (0.1) | 1.00 (Referent) | 1.00 (Referent) | 1,240 (0.5) | 1.00 (Referent) | 1.00 (Referent) |
| Physical only | 57 (0.1) | 1.28 (0.98-1.68) | 1.27 (0.96-1.69) | 79 (0.2) | 1.40 (1.10-1.79) | 1.59 (1.23-2.06) | 277 (0.8) | 1.61 (1.40-1.84) | 1.72 (1.50-1.98) |
| Sensory only | 22 (0.1) | 1.40 (0.92-2.13) | 1.32 (0.86-2.03) | 16 (0.1) | 1.00 (0.60-1.64) | 1.07 (0.65-1.76) | 62 (0.7) | 1.26 (0.96-1.66) | 1.13 (0.85-1.50) |
| Intellectual/developmental only | < 6b | b | b | < 6b | b | b | 42 (4.3) | 8.95 (6.38-12.55) | 5.42 (3.83-7.68) |
| Multiple disabilities | < 6b | b | b | 8 (0.3) | 2.19 (1.09-4.40) | 2.04 (0.96-4.31) | 52 (1.8) | 3.18 (2.26-4.49) | 3.20 (2.31-4.42) |
Adjusted for maternal age, parity, rural residence, and neighbourhood income quintile
<6 = findings suppressed to protect patient identities
Recurrent mental illness.
Among those with distal mental illness, women with physical (28.9%; aRR 1.10, 95% CI 1.08-1.12), sensory (28.3%; aRR 1.06, 95% CI 1.02-1.09), intellectual/developmental (35.2%; aRR 1.24, 95% CI 1.11-1.37), and multiple disabilities (31.2%; aRR 1.16, 95% CI 1.09-1.23) had increased risk of recurrent disorders in the perinatal period, compared to those without a disability (26.5%) (Table 2). This increased risk was sustained for pregnancy and postpartum time periods individually (Table 3); for mood and anxiety, psychotic, substance use, and other mental disorders (Table 4); and for contacts with outpatient care, as well as emergency department visits and hospitalizations (Table 5).
Ongoing health care contact.
Among women with a recent history of mental illness, those with physical (61.8%; aRR 1.09, 95% CI 1.08-1.10), sensory (61.2%; aRR 1.08, 95% CI 1.06-1.10), intellectual/developmental (74.0%; aRR 1.31, 95% CI 1.26-1.37), and multiple disabilities (67.8%; aRR 1.20, 95% CI 1.16-1.23) had increased risk of ongoing use of mental health services perinatally, compared to those without a disability (56.6%) (Table 2). This increased risk was sustained for pregnancy and postpartum time periods individually (Table 3); for mood and anxiety, psychotic, substance use, and other mental disorders (Table 4); for contacts with outpatient care, emergency department visits, and hospital admissions; and – unlike for women in the other strata – for intentional self-injury/suicide (Table 5).
In additional analyses, risks of perinatal mental illness were elevated across disability groups in women with no history of mental illness, a history of outpatient psychiatric care only, and a history of acute psychiatric care (Table S3). Risks of perinatal mental illness were also consistently elevated by disability type subgroup (Table S4). Findings were robust, and consistent with the main analysis, when we required ≥ 2 physician visits for a perinatal mental illness instead of ≥ 1 (Table S5).
DISCUSSION
In this population-based cohort study, women with disabilities were at increased risk for health system contact for mental illness in the perinatal period, compared to women without disabilities. This trend was evident in new-onset disorders as well as recurrent disorders, and there were elevated risks of mental health service use and rare but serious adverse outcomes, including psychiatric hospital admission and intentional self-injury/suicide, among women with disabilities who had ongoing mental illness as they entered pregnancy. Across analyses, risks were greatest among women with intellectual/developmental disabilities and those with multiple disabilities. While most women in the cohort did not experience perinatal mental illness, observed elevated risks in those with disabilities are important because of the implications of perinatal mental illness for long-term maternal and child health and wellbeing [2,3]. Taken together, our data therefore demonstrate that women with disabilities, and particularly those with a pre-pregnancy history of mental illness, have important mental health-related concerns in the perinatal period, supporting a critical need for adapted, tailored screening and intervention approaches to optimize their perinatal mental health.
Few studies have examined perinatal mental illness among women with disabilities. Our findings are aligned with a study of Rhode Island, USA, in which women with disabilities were more likely than those without disabilities to report postpartum depression symptoms (aRR 1.6, 95% CI 1.1-2.2), even after accounting for psychiatric history [18]. Our data are also consistent with our prior work showing women with intellectual/developmental disabilities were at elevated risk of postpartum psychiatric emergency department visits and hospital admissions [19]. Further, these findings align with qualitative and clinical studies describing elevated levels of psychological distress in prospective and new mothers with disabilities, especially among those with intellectual/developmental disabilities [16,17]. In the current study, we confirmed prior findings in groups with physical, sensory, intellectual/developmental, and multiple disabilities, spanning the perinatal period, and using administrative data to understand the timing, diagnosis, and severity of presentation perinatally, according to pre-pregnancy history of mental illness.
While most women did not experience perinatal mental illness, elevated risks among women with disabilities compared to those without disabilities, regardless of their pre-pregnancy mental illness histories, warrant further exploration to understand the reasons for these patterns. These findings are important because they demonstrate the perinatal period is a time of significant vulnerability to new-onset mental illness in women with disabilities, and also recurrent and continued use of mental health services – as well as adverse outcomes – in those with a pre-pregnancy history of mental illness. While we could not measure all of the potential mechanisms (e.g., low social support and stressful life events [6]), prior studies show women with disabilities are more likely than their peers to be single parents and to experience both social isolation and abuse [7,8]. They may also encounter more perinatal stressors than their peers, such as medical complications [14,15], stigmatizing attitudes by clinicians and family members towards pregnancy [32,33], and child welfare involvement [34]. Some women with physical disabilities (e.g., multiple sclerosis) also experience increased symptoms in the perinatal period related to their disabilities [35], so findings could reflect the difficulty of managing these fluctuations. These factors may contribute to the higher risk of new-onset mental illness and of recurrent and continued use of mental health services during the perinatal period in this population. In this study, perinatal mental illness was largely characterized by outpatient visits and by mood and anxiety disorders. However, notably, women with disabilities had elevated risks of psychiatric emergency department visits, regardless of their mental illness history. Those with a history of mental illness also had elevated risks of rare but severe outcomes, including psychiatric hospital admissions and self-harm/suicide. These findings are concerning and may reflect gaps in community-based mental health care for women with disabilities.
These findings have implications for prevention and treatment of perinatal mental illness among women with disabilities. First, women with disabilities, regardless of their mental illness histories, should be offered screening for mental illness symptoms, both in early pregnancy and the postpartum period, as per US Preventive Services Task Force recommendations [36]. This may require adapted screening tools for some groups, to address accessibility issues (e.g., since tools such as the Edinburgh Postnatal Depression Scale may not be accurate when administered to women with intellectual/developmental disabilities due to difficulties interpreting and recalling symptoms) [37]. Women with disabilities could benefit from secondary preventive efforts, including preconception and early prenatal planning for mental health supports. Such supports could leverage interprofessional care teams, including social workers and other providers who frequently work with women with disabilities. Integration of obstetric, mental health, and disability-related care and use of collaborative care models may be important to ensure continuity and effective organization of services [38]. Mental health services should be adapted to meet the disparate learning, cognition, and communication needs of women with disabilities (e.g., hands-on or pictorial resources for women with intellectual/developmental disabilities, availability of ASL interpreters for d/Deaf women). Supports should also reflect their life circumstances by acknowledging the roles of poverty, stigma, and social isolation in not only influencing mental health in this population [39], but also acting as barriers to care. Mental health supports should take a disability-affirming approach [40] that emphasizes strengths and builds trust between provider and patient. Finally, such supports should be trauma-informed, and address fears women with disabilities experience seeking mental health care, for example, about the implications of perinatal mental illness for providers’ likelihood of initiating child welfare services involvement [34]. Underlying these changes is a need for effective training and education to improve disability competency among mental health care providers, who typically lack expertise and experience about disability and accessibility.
Limitations and strengths
Use of health administrative data to identify disability meant that we relied on a medical model which does not reflect environmental influences on disability. As such, we may have under-ascertained disabilities that did not have a diagnosis and over-ascertained those that were not disabling to the individual. Due to this reliance on diagnoses, we were also limited in our ability to capture mental illness. A significant proportion of women with symptoms of perinatal mental illness do not receive care [4]. It is therefore possible perinatal mental illness was under-ascertained, more so among women with disabilities who experience barriers to care. On the other hand, surveillance bias in groups thought to be at risk for mental illness could result in over-ascertainment of perinatal mental illness. Importantly, however, the association between disability and perinatal mental illness persisted when we examined psychiatric emergency department visits and hospital admissions, suggesting findings could not be explained by surveillance bias, which would most likely occur in ambulatory settings in which screening usually occurs. Further, findings were robust when we used a more conservative definition requiring women to have ≥ 2 physician visits for a perinatal mental illness instead of ≥ 1. We could not measure severity of psychiatric symptomatology, and used proxies of severe events (i.e., hospital admissions, self-harm/suicide). Also, despite the large cohort, some analyses for psychotic disorders, substance use disorders, and self-harm/suicide were under-powered; further research is needed to explore patterns in these rare but serious outcomes. Distal history of mental illness may have been misclassified in women with disabilities who moved to Ontario part way through the lookback period. We used lack of health system contact in the two years before pregnancy as the basis for which recurrent mental illness was classified; however, it is possible women continued to experience symptoms during this period and simply did not or could not access care. As such, there may be some overlap in recurrent and ongoing mental illness. It is also possible that women with recurrent mental illness could include those with a new or different diagnosis than that received in the past, but this was not differentiated in our data.
We could not account for low social support or stressful life events, which are important predictors of perinatal mental illness [6] and are more common in women with disabilities. Finally, we could not measure important equity-related variables, such as race/ethnicity and Indigenous status. Disability is over-represented in racialized groups [41], and experiences of racism are associated with perinatal mental illness [42]. Future studies should examine perinatal mental health at the intersection of disability and race/ethnicity.
Despite these limitations, this study has significant strengths. ICES health administrative data allowed us to use a province-wide dataset to describe the perinatal mental health of all residents in a universal health care system. Our study was therefore not subject to selection bias that impacts studies of disability service users. The use of health administrative data also obviates concerns about social desirability bias and errors reporting health conditions.
Conclusion
In this large, population-based cohort study, we found women with disabilities were at elevated risk, compared to those without disabilities, for mental illness in the perinatal period, including new-onset disorders and recurrent or ongoing use of mental health services. While most women do not experience perinatal mental illness, the observed disparities suggest more could be done to support perinatal mental health among women with disabilities. Findings show the need for adapted screening and mental health intervention approaches for women with disabilities, and especially those with a pre-pregnancy history of mental illness.
Supplementary Material
Acknowledgments:
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 the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under award # 5R01HD092326. This research was undertaken, in part, thanks to funding from the Canada Research Chairs Program to Dr. Hilary K. Brown. The analyses, conclusions, opinions and statements expressed herein are solely those of the authors and do not reflect those of the funding; no endorsement is intended or should be inferred.
Declarations:
Parts of this material are based on data and/or information compiled and provided by the Canadian Institute for Health Information (CIHI). However, the analyses, conclusions, opinions and statements expressed in the material are those of the author(s), and not necessarily those of CIHI. Dr. Vigod receives royalties from UpToDate Inc for authorship of materials related to depression and pregnancy.
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