Background: We have limited information on families' experiences during transition and after discharge from the neonatal intensive care unit. Methods: Open-ended semi-structured interviews were conducted with English or Spanish-speaking families enrolled in Medicaid in an urban high-risk infant follow up clinic at a safety-net center, which serves preterm and high-risk term infants. We generated salient themes using inductive-deductive thematic analysis. Results: Twenty-one participants completed the study. The infant's median (IQR) birth weight was 1750 (1305, 2641) grams; 71% were Hispanic and 10% were Black non-Hispanic; 62% reported living in a neighborhood with 3-4th quartile economic hardship. All were classified as having chronic disease per the Pediatric Medical Complexity Algorithm and 67% had medical complexity. A conceptual model was constructed and the analysis revealed major themes describing families' challenges and ideas to support transition centered on the parent-child role and parent self-efficacy. The challenges were: (1) comparison to normal babies, (2) caregiver mental health, (3) need for information. Ideas to support transition included, (1) support systems, (2) interventions using mobile health technology (3) improved communication to the primary care provider and (4) information regarding financial assistance programs. Specific subthemes differed in frequency counts between infants with and without medical complexity. Conclusions: Families often compare their preterm or high-risk infant to their peers and mothers feel great anxiety and stress. However, families often found hope and resilience in peer support and cited that in addition to information needs, interventions using mobile health technology and transition and financial systems could better support families after discharge.
BACKGROUND: Studies have revealed an association between hospitalization of breastfed infants and weaning posthospitalization. It is unknown what steps inpatient providers at children's hospitals are currently taking to support breastfeeding mothers of hospitalized infants, their comfort providing breastfeeding counseling, and what training they receive. METHODS: We conducted a multicenter survey study of pediatric providers who care for infants hospitalized at 3 urban, tertiary-care children's hospitals over a 12-month period. A convenience sample of nurses, residents, and attending physicians agreed to participate. Participants completed a 24-question questionnaire addressing provider practices, comfort with breastfeeding counseling, and previous breastfeeding education. Data were summarized as medians (interquartile ranges) and frequencies (percentages). Kruskal-Wallis and x 2 tests were used to compare between provider types. RESULTS: A total of 361 out of 1097 (33%) eligible providers completed the survey: 133 (21%) nurses, 166 (45%) residents, and 62 (63%) attending physicians. Provider practices varied by provider type. We observed a general trend that providers do not routinely review breastfeeding techniques, directly observe feeds, or use standardized breastfeeding assessment tools. Residents and attending physicians were more likely than nurses to feel comfortable with breastfeeding counseling (P 5 .02). Residents were more likely than nurses and attending physicians to have received breastfeeding education in the last 3 years (P , .001). CONCLUSIONS: Practices, comfort, and previous education varied by provider type. There was a general pattern that providers do not routinely perform certain practices. Further studies are needed to determine if inpatient provider practices affect weaning posthospitalization and if inpatient quality improvement initiatives will help mothers continue breastfeeding posthospitalization.
Objective Twin-twin transfusion syndrome (TTTS) is a rare but serious condition that can occur in monochorionic and diamniotic twin pregnancies. Research indicates almost half of postpartum mothers with TTTS may have clinically significant levels of stress. However, no studies have measured the levels of parenting stress at 2 years postpartum, and little research has been conducted on sources of stress. Study Design A prospective cohort study was conducted. Data were collected from parents whose children were treated with laser ablation in utero and were 2 years old at the time of screening. The Parenting Stress Index - Short Form (PSI-SF) and its three subscales were used to collect data. Descriptive, bivariate, and multivariate analyses were conducted to determine significant predictors associated with each outcome. Results A total of 99 children from 56 families were enrolled. Unmarried status (B = –22.8; p = 0.039) and lower maternal educational level (B = –7.8; p = 0.01) were both significantly associated with higher PSI-SF total score. Conclusion Subgroups of parents whose pregnancy required laser surgery for TTTS may continue to have clinically significant levels of stress at 2 years postpartum. It is important the health care team is aware of this and the sociodemographic risk factors to provide appropriate support for families.
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