Evidence map›Paper›PMID 42098717›Full record

ArticleBMC pediatrics2026

Using journey mapping to capture parents' experiences across phases of neonatal care: a qualitative study.

Josephine H L Wagenaar, Crystal Mah, Fredrik Bodell, Gerbrich E van den Bosch, Sylvia A Obermann-Borst, Irwin Km Reiss, Maaike S Kleinsmann, H Rob Taal, Saba Hinrichs-Krapels

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Article in BMC pediatrics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

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2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

9 authors.

Josephine H L WagenaarDepartment of Neonatal and Paediatric Intensive Care, Erasmus Medical Center Sophia Children's Hospital Rotterdam, Rotterdam, The Netherlands.
Crystal MahFaculty of Industrial Design, Department of Design Organization and Strategy, TU Delft, Delft, The Netherlands.
Fredrik BodellFaculty of Industrial Design, Department of Design Organization and Strategy, TU Delft, Delft, The Netherlands.
Gerbrich E van den BoschDepartment of Neonatal and Paediatric Intensive Care, Erasmus Medical Center Sophia Children's Hospital Rotterdam, Rotterdam, The Netherlands.
Sylvia A Obermann-BorstCare4Neo, neonatal parent- and patient advocacy organization, Rotterdam, The Netherlands.
Irwin Km ReissDepartment of Neonatal and Paediatric Intensive Care, Erasmus Medical Center Sophia Children's Hospital Rotterdam, Rotterdam, The Netherlands.
Maaike S KleinsmannFaculty of Industrial Design, Department of Design Organization and Strategy, TU Delft, Delft, The Netherlands.
H Rob TaalDepartment of Neonatal and Paediatric Intensive Care, Erasmus Medical Center Sophia Children's Hospital Rotterdam, Rotterdam, The Netherlands.
Saba Hinrichs-KrapelsFaculty of Technology, Policy and Management, Institute of Health Systems Science, TU Delft, Jaffalaan 5, Delft, 2628 BX, The Netherlands. s.hinrichs@tudelft.nl.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundNeonatal admissions are often lengthy and traumatic for parents, affecting parental and child outcomes. Parents' care experiences are shaped by emotional, informational, and practical factors. Understanding these factors is essential to improve support and outcome.

methodsWe used a mixed-methods approach to develop a parental journey map, including: (1) conceptualizing a parental journey map (exploratory research), (2) developing the map (six interviews), (3) iteration (with eight parents), and (4) exploring transfer experiences (eight additional parents).

resultsThe journey map illustrated parents' transition from feeling powerless to confident caregivers at home. Early phases were dominated by emotional overload and limited cognitive capacity, highlighting the need for dosed, timely and consistent communication, practical information and acknowledgement of their parenting role. As the journey progressed, parents' needs shifted toward continuity of care, trust-building and individualized participation in caregiving, with inconsistencies emerging as key stressors. Transfers between units were a particularly vulnerable phase. Preparations, clear expectations and acknowledgement of prior experiences by all healthcare providers were essential. Parents' experiences varied widely, highlighting the importance of individualized care.

conclusionsThis study demonstrates the value of journey mapping in capturing the diverse and evolving needs of parents during the different phases of their neonatal care journey. By highlighting when and how communication, psychosocial support, and parental role acknowledgement are most impactful, these findings provide a structured foundation for designing phase-specific, parent-centered interventions. Our results underline the need for future research across diverse parental backgrounds and time points to inform equitable improvements in neonatal care.

Indexed as

ParentsAdultContinuity of Patient CareFemaleHumansInfant, NewbornIntensive Care Units, NeonatalMaleProfessional-Family RelationsQualitative ResearchHealth service designJourney mappingNeonatal careQualitative research

Identifiers

PMID42098717
PMCPMC13536733

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.