Sara Munoz-Blanco1, Renee D Boss2, Lisa Ross DeCamp3, Pamela K Donohue4. 1. Johns Hopkins School of Medicine, Department of Pediatrics, 1800 Orleans St., Baltimore, MD 21287, United States. Electronic address: sara.munoz-blanco@utsouthwestern.edu. 2. Johns Hopkins School of Medicine, Department of Pediatrics, 1800 Orleans St., Baltimore, MD 21287, United States; Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Ave, Baltimore, MD 21205, United States. Electronic address: rboss1@jhu.edu. 3. Johns Hopkins School of Medicine, Department of Pediatrics, 1800 Orleans St., Baltimore, MD 21287, United States. Electronic address: lisa.decamp@childrenscolorado.org. 4. Johns Hopkins School of Medicine, Department of Pediatrics, 1800 Orleans St., Baltimore, MD 21287, United States; Johns Hopkins Bloomberg School of Public Health, 615N Wolfe St., Baltimore, MD 21205, United States. Electronic address: pdonohu2@jhmi.edu.
Abstract
OBJECTIVE: Research shows NICU Latino parents with limited English proficiency (LEP) feel less comfortable asking questions and participating in medical decision-making, which may negatively affect transition to community healthcare. Question prompt lists (QPL), suggested questions sometimes drawn from families and providers, can improve family-centered communication. We explored clinician and parent perceptions to inform development of and pilot a NICU discharge QPL. METHODS: Focus groups with NICU and primary care providers explored perceived educational needs of Latino parents LEP and barriers to effective transition to community healthcare. Semi-structured interviews with Latino parents LEP explored perceptions of knowledge gaps and recommendations to improve the transition process. A Spanish audio QPL for parents and an English written version for providers were developed and pilot tested for acceptability. RESULTS: Provider focus groups (n = 27) and parent interviews (n = 19) identified themes: decreased parent activation, knowledge gaps, limited-use interpreters, unfamiliarity with healthcare system, and social isolation as barriers to smooth NICU-to-home transition. Providers (n = 11) and parents (n = 10) favored QPL introduction early in NICU admission, finding it useful to improve communication and transition processes for families. CONCLUSION: Our QPL may address challenges faced by Latino parents LEP when transitioning home. PRACTICE IMPLICATIONS: QPLs may improve Latino NICU infants' healthcare outcomes.
OBJECTIVE: Research shows NICU Latino parents with limited English proficiency (LEP) feel less comfortable asking questions and participating in medical decision-making, which may negatively affect transition to community healthcare. Question prompt lists (QPL), suggested questions sometimes drawn from families and providers, can improve family-centered communication. We explored clinician and parent perceptions to inform development of and pilot a NICU discharge QPL. METHODS: Focus groups with NICU and primary care providers explored perceived educational needs of Latino parents LEP and barriers to effective transition to community healthcare. Semi-structured interviews with Latino parents LEP explored perceptions of knowledge gaps and recommendations to improve the transition process. A Spanish audio QPL for parents and an English written version for providers were developed and pilot tested for acceptability. RESULTS: Provider focus groups (n = 27) and parent interviews (n = 19) identified themes: decreased parent activation, knowledge gaps, limited-use interpreters, unfamiliarity with healthcare system, and social isolation as barriers to smooth NICU-to-home transition. Providers (n = 11) and parents (n = 10) favored QPL introduction early in NICU admission, finding it useful to improve communication and transition processes for families. CONCLUSION: Our QPL may address challenges faced by Latino parents LEP when transitioning home. PRACTICE IMPLICATIONS: QPLs may improve Latino NICU infants' healthcare outcomes.