Postpartum Hospital Utilization among Massachusetts Women with Intellectual and Developmental Disabilities: A Retrospective Cohort Study.

Objectives This study examined the risk of postpartum hospital admissions and emergency department (ED) visits among US women with intellectual and developmental disabilities (IDD). Methods We used the 2002-2012 Pregnancy to Early Life Longitudinal Data System and identified deliveries to women with and without IDD. Women with IDD (n = 1104) or case subjects were identified from the International Classification of Diseases and Related Health Problems 9th Revision (ICD-9 CM) codes. The study primary outcome measures were any postpartum hospital admission and any ED visit during three critical postpartum periods (1-42, 43-90, and 1-365 days). We conducted unadjusted and adjusted survival analysis using Cox proportional hazard models to compare the occurrence of first hospital admission or ED visits between women with and without IDD. Results We found that women with IDD had markedly higher rates of postpartum hospital admissions and ED visits during the critical postpartum periods (within 1-42, 43-90, and 91-365 days) after a childbirth. Conclusion for Practice Given the heightened risk of pregnancy complications and adverse birth outcomes and the findings of this study, there is an urgent need for clinical guidelines related to the frequency and timing of postpartum care among new mothers with IDD. Further, this study provides evidence of the need for evidence-based interventions for new mothers with IDD to provide preventive care and routine assessments that would identify and manage complications for both the mother and the infant outside of the traditional postpartum health care framework.

Formal and Informal Supports for Women With Intellectual and Developmental Disabilities During Pregnancy.

This article explores the role of formal and informal supports for women with intellectual and developmental disabilities (IDD) throughout their pregnancy, childbirth, and postpartum experiences. Data from qualitative interviews with women with IDD (n = 16) were analyzed. Results showed that formal supports aided in planning, transportation, advocacy, and providing emotional support throughout pregnancy. Informal supports helped with errands, comfort, and emotional encouragement. The community surrounding these women facilitated communication with providers, self-empowerment regarding health choices, and increased preparedness for parenthood. Findings indicate the importance of encouraging and sustaining both formal and informal supports during pregnancy, childbirth, and postpartum to improve pregnancy and parenting experiences for women with IDD.

Impact of COVID-19 on Youth With ADHD: Predictors and Moderators of Response to Pandemic Restrictions on Daily Life.

We examined COVID-19 symptoms and infection rates, disruptions to functioning, and moderators of pandemic response for 620 youth with ADHD and 614 individually matched controls (70% male; Mage = 12.4) participating in the Adolescent Brain and Cognitive Development study. There were no group differences in COVID-19 infection rate; however, youth with ADHD were more likely to exhibit COVID-19 symptoms (d = 0.25), greater sleep problems (d = -0.52), fear and negative emotions to infection risk (d = -0.56), trouble with remote learning (d = -0.54), rule-breaking behavior related to COVID-19 restrictions (d = -0.23), family conflict (d = -0.13), and were less prepared for the next school year (d = 0.38). Youth with ADHD were less responsive to protective environmental variables (e.g., parental monitoring, school engagement) during the pandemic and may need more specialized support with return to in-person schooling and daily activities.

Adaptive parenting strategies used by mothers with physical disabilities caring for infants and toddlers.

There is a paucity of information concerning adaptive parenting strategies utilised by mothers with physical disabilities, particularly during early motherhood. The purpose of this study is to describe the adaptive strategies used by mothers with physical disabilities during early motherhood. This qualitative study included semi-structured telephone interviews between January and March 2014 with US mothers with a range of physical disabilities who had a baby within the past 10 years (N = 25). Interviews were audio-recorded, professionally transcribed, and coded using content analysis. Analysis revealed five broad themes indicating important adaptive parenting strategies for mothers with physical disabilities caring for infants and toddlers: They are as follows: (a) acquiring or modifying baby-care equipment, (b) adapting the home environment, (c) accessing information and supports, (d) developing communication strategies to facilitate safety, and (e) receiving assistance from others. This study indicates that mothers with physical disabilities employ a variety of adaptive strategies during early motherhood. The findings from the study suggest the need for more availability of supports and equipment for mothers with physical disabilities as well as information for prospective mothers with disabilities. In addition, healthcare and social work professionals must receive training about adaptive parenting strategies.

Breastfeeding Among Women With Physical Disabilities in the United States.

BACKGROUND: The benefits of breastfeeding are well established, and breastfeeding is now widely practiced in the United States. Although increasing numbers of women with physical disabilities are having children, little information is available about breastfeeding practices among these women. Nonetheless, the children of women with physical disabilities should benefit from breastfeeding just as children of nondisabled mothers do. Research aim: This study aimed to explore the facilitators and barriers to breastfeeding among women with physical disabilities. METHODS: This study involved semistructured telephone interviews with a convenience sample of women ( N = 25) with diverse physical disabilities from across the United States. All participants had given birth within the past 10 years. Interviews were audio-recorded, professionally transcribed, and analyzed using content analysis. RESULTS: Analyses found four broad themes indicating facilitators to breastfeeding: (a) adaptations and equipment, (b) use of breast pump, (c) physical assistance from others, and (d) peer support. We also found five broad themes suggesting barriers to breastfeeding: (a) lack of supports, (b) disability-related health considerations, (c) limited information, (d) difficulties with milk production, and (e) difficulties latching. CONCLUSION: The need for greater supports for women with physical disabilities who desire to breastfeed as well as information for women and their clinicians about facilitating breastfeeding.

Birth outcomes among US women with intellectual and developmental disabilities.

BACKGROUND: Women with intellectual and developmental disabilities (IDD) are bearing children at increasing rates. However, there is very little research about pregnancy experiences and birth outcomes among women with IDD. No studies to date have examined birth outcomes with a US population-based sample. OBJECTIVE: The main objective was to estimate the national occurrence of deliveries in women with IDD and to compare their birth outcomes to women without IDD. METHODS: We examined the 2007-2011 Nationwide Inpatient Sample of the Healthcare Cost and Utilization Project to compare birth outcomes in women with and without IDD. Birth outcomes included preterm birth, low birth weight, and stillbirth. Multivariable regression analyses compared birth outcomes between women with and without IDD controlling for race/ethnicity, maternal age, household income, health insurance status and type, comorbidity, region and hospital location, teaching status, ownership, and year. RESULTS: Of an estimated 20.6 million deliveries identified through the HCUP 2007-2011 data 10,275 occurred in women with IDD. In adjusted regression analyses, women with IDD compared to those without IDD were significantly more likely to have preterm birth (OR = 1.46; 95%CI: 1.26-1.69, p < 0.001), low birth weight (OR = 1.61, 95%CI: 1.27-2.05, p < 0.001), and stillbirth (OR = 2.40, 95% CI: 1.70-3.40, p < 0.001). CONCLUSION: This study provides a first examination of the birth outcomes among women with IDD in the United States using a largest population-based sample. There are significant differences in birth outcomes between women with and without IDD. Understanding the causes of these differences and addressing these causes are critical to improving pregnancy outcomes among women with IDD.

Population Estimates, Health Care Characteristics, and Material Hardship Experiences of U.S. Children With Parent-Reported Speech-Language Difficulties: Evidence From Three Nationally Representative Surveys.

Purpose: To provide estimates for the prevalence of parent-reported speech-language difficulties in U.S. children, and to describe the levels of health care access and material hardship in this population. Method: We tabulated descriptive and bivariate statistics using cross-sectional data from the 2007 and 2011/2012 iterations of the National Survey of Children's Health, the 2005/2006 and 2009/2010 iterations of the National Survey of Children with Special Health Care Needs, and the 2004 and 2008 panels of the Survey of Income and Program Participation. Results: Prevalence estimates ranged from 1.8% to 5.0%, with data from two of the three surveys preliminarily indicating increased prevalence in recent years. The largest health care challenge was in accessing care coordination, with 49%-56% of children with parent-reported speech-language difficulties lacking full access. Children with parent-reported speech-language difficulties were more likely than peers without any indications of speech-language difficulties to live in households experiencing each measured material hardship and participating in each measured public benefit program (e.g., 20%-22% experiencing food insecurity, compared to 11%-14% of their peers without any indications of speech-language difficulties). Conclusions: We found mixed preliminary evidence to suggest that the prevalence of parent-reported speech-language difficulties among children may be rising. These children face heightened levels of material hardship and barriers in accessing health care.

Sibling Caregivers of People With Intellectual and Developmental Disabilities: Sociodemographic Characteristics and Material Hardship Prevalence.

In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.