This study evaluated the impact on caregiver strain and family empowerment among caregivers of children with disabilities who received training and education as part of a family-centred community-b...
The ability to screen newborns for a larger number of disorders, including many with variable phenotypes, is prompting debate regarding the psychosocial impact of expanded newborn bloodspot screening (NBS) on parents. This study compares psychological outcomes of parents of children with a range of NBS/diagnostic experiences, with a particular focus on lysosomal storage disorders (LSDs) and X-linked adrenoleukodystrophy (X-ALD) as representative disorders with complex presentations. An online cross-sectional survey with six domains was completed in 2019 by a volunteer sample of parents with at least one child born between 2013 and 2018. Parents were classified in the analysis stage into four groups based on their child’s rare disorder and means of diagnosis. Stress and depression were estimated using dichotomous measures of the depression subscale of the Hospital Anxiety and Depression Scale and the Parental Stress Scale. Logistic regression models were estimated for the relationship between the parent group and stress/depression, controlling for demographic variables (region of the US, income, education, major life events, relationship to the child, number of children, parent age, and race/ethnicity). One hundred seventy-four parents were included in this analysis. Parents of children with an LSD or X-ALD diagnosis clinically may have higher odds of depression (OR: 6.06, 95% CI: 1.64–24.96) compared to parents of children with the same disorders identified through NBS, controlling for covariates. Although a similar pattern was observed for parental stress (OR: 2.85, 95% CI: 0.82–10.37), this did not reach statistical significance. Ethically expanding NBS and genome sequencing require an understanding of the impacts of early detection for complex disorders on families. These initial findings are reassuring, and may have implications as NBS expands. Given our small sample size, it is difficult to generalize these findings to all families. These preliminary trends warrant further investigation in larger and more diverse populations.
BACKGROUND: Postpartum hypertension is a key factor in racial-ethnic inequities in maternal mortality. Emerging evidence suggests that experiences of racism, both structural and interpersonal, may contribute to disparities. We examined associations between gendered racial microaggressions (GRMs) during obstetric care with postpartum blood pressure (BP). METHODS: We conducted a prospective postpartum cohort of 373 Asian, Black, and Hispanic people in New York City and Philadelphia. At delivery, we administered the GRM in obstetrics scale. We measured BP for 3 months using text-based monitoring. We estimated place-based structural racism with the Structural Racism Effect Index. We used mixed models to estimate associations between GRM and mean postpartum systolic BP and diastolic BP. We adjusted for race-ethnicity, education, body mass index, chronic hypertension (diagnosed at <20 weeks of gestation), age, and the Structural Racism Effect Index. We examined effect modification by hypertensive disorder of pregnancy and place-based structural racism. RESULTS: A total of 4.6% of participants had chronic hypertension, 20.9% had pregnancy hypertension, and 13.4% had preeclampsia, comprising a hypertensive disorder of pregnancy subgroup (n=117). A total of 37.5% of participants experienced ≥1 GRM. Participants who experienced ≥1 GRM versus none had 1.88 mm Hg higher systolic BP from days 1 to 10 (95% CI, −0.19 to 3.95) and 2.19 mm Hg higher systolic BP from days 11 to 85 (95% CI, 0.17–4.22). Associations followed a similar pattern for diastolic BP and were stronger among the hypertensive disorder of pregnancy subgroup. Participants experiencing GRM and a high Structural Racism Effect Index had systolic BP 7.55 mm Hg (95% CI, 3.41–11.69) and diastolic BP 6.03 mm Hg (95% CI, 2.66–9.41) higher than those with neither. CONCLUSIONS: Structural racism and interpersonal racism are associated with increased postpartum BP, potentially contributing to inequities in postpartum morbidity and mortality and lifecourse cardiovascular disease.
Maternal morbidity and mortality in the United States is an urgent public health issue, and there are stark differences by race and ethnicity. Community-based doula care is an evidence-based strategy to improve maternal health through accompaniment, health care engagement, addressing social needs, and promoting respectful care. Yet, there is a gap in access to doula care for people who are low-income or publicly insured, due to cost and availability. New York has recently joined a growing number of states providing Medicaid coverage for doula services. There are many challenges to overcome for this benefit to succeed: limited workforce capacity, minimal integration of doulas into hospitals, and reimbursement challenges. We offer a case study for integrating doula services into hospital-based maternity care: the HOPE Program (Helping Promote Birth-Equity through Community-Based Doula Care). Through community engagement, we have co-designed a model that centers the needs and experiences of birthing people and their care-giving teams. The model illustrates strategies for hospital–community engagement, tailored doula workforce expansion, and integration of doulas into clinical spaces and teams. Investment in these components will lead to a meaningful expansion of doula services to the populations around the state and country who need it most.
OBJECTIVE: Neighborhood walkability is associated with lower gestational diabetes mellitus (GDM) risk, but its association with type 2 diabetes after GDM is unknown. We estimated this association and assessed effect modification by individual and neighborhood socioeconomic conditions. RESEARCH DESIGN AND METHODS: Women with GDM who delivered in New York City (NYC) in 2009–2011 were identified through birth certificate records and hospital discharge data and linked to NYC A1C Registry data (2009–2021) for follow-up. Women with prepregnancy diabetes were excluded. A previously published neighborhood walkability index was categorized into quartiles. Type 2 diabetes was ascertained as two A1C results ≥6.5% (48 mmol/mol) after 12 weeks postpartum. Cox proportional hazards models estimated associations between walkability and type 2 diabetes after GDM, adjusting for individual- and neighborhood-level characteristics. Stratification analyses were conducted by socioeconomic conditions. RESULTS: Among 12,403 women with GDM at baseline, the 12-year cumulative incidence of type 2 diabetes was 20.6%. Adjusted hazard ratios (aHRs) of type 2 diabetes for low-medium (aHR 0.89 [95% CI 0.76, 1.04]), medium (aHR 0.85 [95% CI 0.74, 0.99]), and high (aHR 0.88 [95% CI 0.76, 1.03]) walkability (vs. low) were protective or null. The protective association from high walkability was observed only in the most affluent neighborhoods (aHR 0.52 [95% CI 0.31, 0.89]). CONCLUSIONS: In NYC, more walkable neighborhoods were associated with lower risk of type 2 diabetes after GDM without a dose-response effect, and associations depended on individual and neighborhood socioeconomic contexts. While increasing walkability is a core planning goal and may improve health, decisions should also address neighborhood inequities in diabetes.