Opportunities and challenges for family-centered postpartum care during the COVID-19 pandemic: a qualitative study of nurse perspectives.

BACKGROUND: The global COVID-19 pandemic has forced the health care sector to make wide-ranging changes to protect patients as well as providers from the risk of infection. Many of these changes are likely to have greatest impact in contexts of care that employ family-centered care (FCC) models, including perinatal and maternity care. Research conducted in perinatal care settings during the pandemic has shown that some of these restrictions have negatively impacted patient and family experiences and outcomes, while others have been perceived as beneficial. The present qualitative study aimed to understand what changes have occurred in postpartum nursing practice during the pandemic, and how these changes have affected nurses, women and families during their stay in the hospital following a new birth. METHODS: Structured interviews were completed with 20 postpartum nurses from five hospitals across Texas. The interview protocol was designed to elicit information about changes to hospital policies in postpartum units during the pandemic, nurses' attitudes about these changes, perceived benefits and challenges for performance of their duties, and perceived effects on patients and their families. Nurses were recruited for the study using a purposive sampling approach. Interviews were conducted by video conference using Zoom and lasted approximately 30 to 45 min. Data were analyzed using a qualitative descriptive approach. RESULTS: Participants reported that their hospitals placed restrictions on the number and mobility of support persons allowed to stay with the mother in the unit and prohibited all other visitation. Some challenges of these policies included reduced opportunities for hands-on learning and an increased number of patients opting for early discharge. Perceived benefits for patient education and outcomes included improved frequency and effectiveness of nurse-family communication, increased father involvement, and greater opportunities for maternal rest, breastfeeding, skin-to-skin care and family bonding. CONCLUSIONS: Study findings suggest that some limitations on postpartum hospital visitation may achieve important, family-centered goals. Protected time for family-bonding, maternal rest, breastfeeding, father involvement and individualized education are critical to quality FCC. Research must examine which visitation policies maximize these benefits while preserving patient access to family and social support.

Remote Learning Experience for Children With Developmental Disabilities During COVID-19 Pandemic in an Ethnically Diverse Community.

Owing to the COVID-19 pandemic, K-12 education in New York City quickly transitioned to remote learning. We performed a structured interview with 50 consecutive families of children with developmental disabilities about their experience with remote learning 2 months after COVID-19 lockdown. We observed that setting up the remote learning system was challenging for families who were born outside of the United States, spoke limited English, or had a lower level of education. Though some special education supports were in place, remote learning for children with developmental disabilities led to gaps in their therapeutic services. Children with more severe developmental disabilities joined less than 2 hours of remote learning per day and had a decrease in their therapeutic services. Most children (80%) relied on their parents for education. Additionally, for low-income communities, with families who spoke languages other than English, remote learning revealed a new barrier to access: technology.

Implementing food bank and healthcare partnerships: a pilot study of perspectives from charitable food systems in Texas.

BACKGROUND: Partnerships between charitable food systems and healthcare systems have been forming across the country to support individuals and families experiencing food insecurity, yet little research has focused on these partnerships, particularly from a food bank perspective. The objective of this exploratory pilot study was to identify implementation challenges and facilitators of charitable food system and healthcare partnerships from the food bank perspective. METHOD: Texas food banks with existing food bank/healthcare partnerships were identify through website review and support from Feeding Texas. Interview questions were tailored to each interview, but all focused on identify program components of the food bank/healthcare partnership and implementation barriers/facilitators of the partnership. In total, six interviews were conducted with food bank/healthcare partnership leaders (n = 4) and charitable food system experts (n = 2) about their experiences of working with food bank/healthcare partnerships. All interviews were completed via Zoom and took between 30 and 60 min to completed. Detailed notes were taking during each interview, and immediately discussed with the complete research time to formulate broad implementation themes. RESULTS: Interviews suggest unique implementation challenges exist at all levels of food bank/healthcare partnerships including the partnership, program, and system levels. Partnership-level implementation challenges focused on issues of partnership scale and data collection, sharing, and analysis. Program-level implementation challenges focused on food and produce expectations. Structural-level implementation challenges included issues of food safety, subsidized food regulations, and patient privacy. Implementation facilitators included leadership support, mission compatibility/organizational readiness, food insecurity training, and identify of partnership champions. CONCLUSIONS: This study adds to the growing interest in food bank/healthcare partnership as it highlights unique implementation challenges and facilitators for cross-sector partnerships between healthcare systems and community-based charitable food systems. Ultimately, we believe that collaborative discussion among leaders of charitable food systems and healthcare systems is needed to overcome outlined implementation challenges to better facilitate sustainable, equitable implementation of food bank/healthcare partnerships.

Caregiver-reported characteristics of children diagnosed with pathogenic variants in KDM5C.

Loss of function variants in the lysine demethylase 5C (KDM5C) gene account for approximately 0.7-2.8% of X-linked intellectual disability (ID) cases and pose significant burdens for patients and their caregivers. To date, 45 unique variants in KDM5C have been reported in individuals with ID. As a rare disorder, its etiology and natural history remain an area of active investigation, with treatment limited to symptom management. Previous studies have found that males present with moderate to severe ID with significant syndromic comorbidities such as epilepsy, short stature, and craniofacial abnormalities. Although not as well characterized, females have been reported to predominantly display mild to moderate ID with approximately half being asymptomatic. Here, we present caregiver-reported data for 37 unrelated individuals with pathogenic variants in KDM5C; the largest cohort reported to-date. We find that up to 70% of affected females were reported to display syndromic features including gastrointestinal dysfunction and hearing impairment. Additionally, more than half of individuals reported a diagnosis of autism spectrum disorder or described features consistent with this spectrum. Our data thus provide further evidence of sexually dimorphic heterogeneity in disease presentation and suggest that pathogenic variants in KDM5C may be more common than previously assumed.