Evidence map›Paper›PMID 42935846›Full record

ArticleDiabetes, obesity, and cardiometabolic CARE

Goals of Care Among Caregivers of Youths With Type 1 Diabetes.

Karen Dimentstein, Neha Parimi, Meg C N Snyder, Suzanne M Grieb, Risa M Wolf

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Article in Diabetes, obesity, and cardiometabolic CARE. 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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4 · The record

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5 · Who and what money

Authors and funding

5 authors.

Karen DimentsteinDivision of Pediatric Endocrinology, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD.ORCID https://orcid.org/0000-0002-8732-845X
Neha ParimiDivision of Pediatric Endocrinology, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD.ORCID https://orcid.org/0000-0003-1338-8270
Meg C N SnyderDepartment of Behavioral Psychology, Kennedy Krieger Institute, Baltimore, MD.
Suzanne M GriebDivision of Pediatric Endocrinology, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD.
Risa M WolfDivision of Pediatric Endocrinology, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD.ORCID https://orcid.org/0000-0001-7674-520X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo characterize goals of care (GOCs) among caregivers of youths with type 1 diabetes (T1D) and evaluate psychosocial factors associated with caregiver priorities using a structured, narrative-based GOC framework adapted from the 3-Act Model. RESEARCH DESIGN AND

methodsWe conducted semistructured interviews with 30 caregivers of diverse youths with T1D. Interviews used a modified 3-Act Model to elicit GOCs. Caregivers and youths (aged ≥8 years) completed validated measures of diabetes distress, quality of life, psychological symptoms, caregiver burden, resilience, and family conflict. Qualitative data were analyzed using reflexive thematic analysis supported by a hybrid human-artificial intelligence coding approach. Quantitative data were summarized descriptively and compared across respondent type and age-group.

resultsThree major themes emerged: health management, emotional and social well-being, and personal development. Caregivers consistently prioritized emotional health, normalization, and fostering of independence, often emphasizing these above meeting glycemic targets. Caregivers of youths aged 8-12 years reported significantly higher diabetes distress relative to youth self-reports. Caregivers perceived youth diabetes-related symptoms as less burdensome than described in youth self-reports (

conclusionsCaregivers of youths with T1D identify goals that extend beyond glycemic metrics to emphasize emotional well-being, autonomy, and quality of life. Integrating structured GOC discussions into routine diabetes care may improve alignment between families and clinical teams, supporting person-centered, developmentally informed diabetes management.

Identifiers

PMID42935846
PMCPMC13696379

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