Evidence map›Paper›PMID 39412081›Full record

ArticleDevelopmental medicine and child neurology2025

Understanding the complexity of decision-making for mothers of young children with ambulatory cerebral palsy: A qualitative phenomenological study.

Meghan E Munger, Rhonda G Cady, Nathan D Shippee, Timothy J Beebe, Tom F Novacheck, Beth A Virnig

Abstract read
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Article in Developmental medicine and child neurology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

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0cells of the map it votes in
3citing papers in PubMed
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1 · What the graph read from it

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3 · Its place in the literature

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3 citing papers in PubMed.

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4 · The record

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5 · Who and what money

Authors and funding

6 authors.

Meghan E MungerDivision of Health Policy and Management, University of Minnesota, Minneapolis, MN, USA.ORCID 0000-0002-9859-6572
Rhonda G CadyDivision of Health Policy and Management, University of Minnesota, Minneapolis, MN, USA.ORCID 0000-0001-7047-6811
Nathan D ShippeeDivision of Health Policy and Management, University of Minnesota, Minneapolis, MN, USA.
Timothy J BeebeDivision of Health Policy and Management, University of Minnesota, Minneapolis, MN, USA.
Tom F NovacheckGillette Children's Specialty Healthcare, St Paul, MN, USA.
Beth A VirnigDivision of Health Policy and Management, University of Minnesota, Minneapolis, MN, USA.

Funding

Gillette Children's Foundation
6 · The paper itself

Abstract

aimTo investigate non-clinical factors that affect health-related decision-making in mothers with young ambulatory children living with cerebral palsy (CP).

methodGuided by phenomenology, we asked parents to describe early experiences of raising a young ambulatory child living with CP. Conversations were audio-recorded, transcribed, coded, and analysed using a qualitative inductive approach.

resultsEighteen parents (all mothers) of 20 children participated. Five themes emerged related to decision-making, each influencing goal setting, prioritization, and health service use. Mothers had to balance both child and family well-being. Acceptance of their child's diagnosis and abilities changed over time, partially influenced by their child's emerging voice. Uncertainty arose when weighing multiple factors regarding child, family, and what the future held. Experiences were laden with system-level burdens related to underinsurance and care coordination. Themes regularly overlapped and persisted.

interpretationOur findings highlight the complexity of the decision-making experienced by mothers of young ambulatory children living with CP. Probing this information can inform appropriate shared care planning that meets the preferences and circumstances of mothers and their families.

Indexed as

Cerebral PalsyDecision MakingMothersAdultChildChild, PreschoolFemaleHumansMaleQualitative Research

Identifiers

PMID39412081
PMCPMC11965969

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LicenceCC BY-NC-ND
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