Abstract
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.
Highlights
Through the qualitative analysis of focus group interviews with families enrolled in an urban high-risk infant follow-up clinic and with providers who care for them, we identified eight domains for family and provider priorities for the future development of a mobile health application, namely, 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
All participants were on Medicaid/California Children’s Services, the majority categorized English as being their first language (81%) and more than half (63%) lived in a service planning area with a 4th quartile economic hardship index
Provision of clear discharge summaries and patient navigators within the proposed mobile application are both opportunities for improvement in communication and could streamline and consolidate the frequently daunting amount of information that caregivers receive during the discharge process
Summary
The transition to home for infants hospitalized in the neonatal intensive care unit (NICU) poses unique challenges, in terms of communication between parents and providers, hospital discharge processes and the psychosocial and emotional status of caregivers [1]. This critical handoff in the care of medically complex infants has been investigated with an increased emphasis on parental and caregiver perspectives [2,3,4]. There has been increased attention to disparities in social determinants of health that exist for families as they embark on this challenging transition of care [4,5,6]. The American Academy of Pediatrics’ updated policy statement entitled “Hospital Discharge of the High-Risk Neonate”
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