RESUMEN
There is limited information regarding caregiver and provider perspectives on uncertainty across the continuum of the neonatal intensive care unit (NICU) experience. Open-ended semi-structured interviews were conducted with providers and English- and Spanish-speaking caregivers of infants with a history of admission to a quaternary safety-net NICU. Major themes were generated using inductive-deductive thematic analysis. Seventy-six individuals participated in the study: 47 caregivers and 29 providers. The median gestational age of the infants was 29 weeks and 85% were classified as having chronic complex disease per the Pediatric Medical Complexity Algorithm. Most providers were neonatologists (37%) and nurses (27%) and more than half had over ten years of experience. A conceptual model of caregiver uncertainty was developed and key domains included drivers of uncertainty and its impact, and factors influencing coping and adaptation. Our analysis found a positive association between caregiver information gathering, clinical continuity, support systems, maternal mental health supports, and witnessing a child's progress and the development of adjustment to chronic uncertainty. These results suggest key areas for intervention that can promote parental adaptation to the uncertainty inherent in the NICU experience.
RESUMEN
There is limited information about caregiver and provider perspectives regarding the design of a mobile health solution to facilitate the transition from the neonatal intensive care unit (NICU) to home. Focus groups were conducted with English- or Spanish-speaking families enrolled in an urban high-risk infant follow-up clinic and with their care providers. We generated salient themes using an inductive thematic analysis. Twenty-two participants completed the study. Among caregivers, the infant's median gestational age (IQR) was 29 (23, 34) weeks and 63% were Hispanic. Among the providers, 55% had practiced for more than 10 years and 18% were bilingual. Key stakeholder (family and provider) priorities for designing a mobile health solution were organized into eight domains, i.e., implementation ideas around user interface and timing, providing path planning and information, increasing support, improving engagement with providers and services, mitigating barriers to care after discharge and strengthening parenting role and confidence. The results from this study suggest that families and healthcare providers prioritize path planning, information and support as the pillars for designing an effective NICU-to-home transition mobile health application. Implications for product development include family empowerment, being a credible source of information and creating a resource for caregiver support and mental health.