Evidence map›Paper›PMID 41175555›Full record

ArticlePatient education and counseling2026

Parent and adolescent perspectives on decision-making involvement: A qualitative comparison in sickle cell and diabetes clinics.

Alfonso L Floyd, Alexis A Thompson, Alexander Fiks, Connie M Ulrich, Pamela F Weiss, Morgan Snyder, Elizabeth A Friedrich, Evelyn Stevens, Victoria A Miller

Abstract readComparative Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Patient education and counseling, 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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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.

Alfonso L FloydChildren's Hospital of Philadelphia, Philadelphia, PA, USA.
Alexis A ThompsonChildren's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Alexander FiksChildren's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Connie M UlrichSchool of Nursing, University of Pennsylvania, Philadelphia, PA, USA.
Pamela F WeissChildren's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
Morgan SnyderChildren's Hospital of Philadelphia, Philadelphia, PA, USA.
Elizabeth A FriedrichChildren's Hospital of Philadelphia, Philadelphia, PA, USA.
Evelyn StevensChildren's Hospital of Philadelphia, Philadelphia, PA, USA.
Victoria A MillerChildren's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. Electronic address: millerv@chop.edu.

Funding

Adolescents’ involvement in decision making during specialty care visits for pediatric chronic illness: Development and evaluation of a new measure and implications for self-managementR01NR020005 · NINR · CHILDREN'S HOSP OF PHILADELPHIA · PI MILLER, VICTORIA ALLISON · 2021 to 2025
$2.6M
NINR NIH HHS R01 NR020005
6 · The paper itself

Abstract

objectiveTo compare adolescent and parent perceptions of decision-making involvement (DMI) in clinic visits for sickle cell disease (SCD) and type 1 diabetes (T1D), and to identify behaviors that facilitate or limit adolescent participation.

methodsSemi-structured qualitative interviews were conducted with adolescents with sickle cell disease (SCD; N = 14; 100 % Black) and type 1 diabetes (T1D; N = 19; 71 % White) and their parents. Using an inductive grounded theory approach, responses to questions about adolescent, parent, and clinician behaviors related to adolescent DMI were reviewed, coded, and sorted into categories and themes.

resultsOverall, many adolescent, parent, and clinician behaviors related to adolescent DMI were described as similar across the two groups. Differences were noted in that some adolescents with SCD occasionally made independent decisions during clinic visits, parents more often acted as facilitators and primary communicators of adolescents with T1D, clinicians more often directed discussions and recommendations primarily to parents of adolescents with SCD, and DMI was attributed to maturity and longstanding relationships with clinicians among adolescents with SCD, whereas among adolescents with T1D, it was attributed to clinician and parent behaviors.

conclusionFindings from the study highlight the importance of trusting relationships between patients and clinicians, and specific parent and clinician behaviors for facilitating adolescent DMI. PRACTICE IMPLICATIONS: Tailored approaches may contribute to increased participation in medical decision making and improved health outcomes, particularly among racially diverse adolescents with chronic health conditions.

Indexed as

Anemia, Sickle CellDecision MakingDiabetes Mellitus, Type 1ParentsPatient ParticipationAdolescentAdultFemaleHumansInterviews as TopicMaleQualitative ResearchAdolescentClinician behaviorsDecision-making involvementParental facilitationPatient participationPediatricsSickle cell diseaseType 1 diabetes

Identifiers

PMID41175555
PMCPMC12584859

What OpenQuestion holds

Textmetadata
LicenceTDM
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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.