What does this research mean for the field?

During the first year of a child's type 1 diabetes diagnosis, primary caregivers experience high levels of clinical distress driven by guilt, worry, and information overwhelm, necessitating targeted support from healthcare professionals. Novelty: ClaimNovelty.CONFIRMATORY. Consensus alignment: ConsensusAlignment.SUPPORTS_CONSENSUS.

What question did this study set out to answer?

The study aims to explore caregiver distress and support needs in the first year following a child’s type 1 diabetes diagnosis.

June 7, 2026

1609-P: Addressing Caregiver Distress in the First Year of a Child’s Type 1 Diabetes Diagnosis: What Parents Tell Us They Need

Key Points

The study aims to explore caregiver distress and support needs in the first year following a child’s type 1 diabetes diagnosis.
Conducted semi-structured interviews with 25 parents of children diagnosed with type 1 diabetes.
Used qualitative thematic analysis to identify key themes of distress and need for support.
Analyzed data through NVivo 11 software.
High levels of caregiver distress were reported at baseline (PAID M = 47.84, SD = 17.13, clinical cutoff = 40).
Identified themes of distress included guilt, worry about the present and future, and feeling overwhelmed by information.
Adjustment to the diagnosis varied based on symptoms severity and was influenced by cultural and social factors.

Abstract

Introduction and Objective: Twenty-five parents of pediatric patients (age 8-17) diagnosed with type 1 diabetes (T1D) within one year participated in The T1D Parent Check-in telehealth intervention. To build rapport and set context, parents were asked to tell their “diagnosis story” - sharing their family’s experience of new diagnosis. Qualitative thematic analysis reveals insight into what caregivers and families need from healthcare professionals and the diabetes community at diagnosis. Methods: Parents participated in a semi-structured interview about their experience of diagnosis in session one. Interviews were conducted by licensed psychologists, recorded, and transcribed. Team-based reflexive thematic analysis was used to develop a codebook. Data were coded and analyzed with NVivo 11 software to group statements by themes. Parents self-reported diabetes related distress at baseline. Results: Consistent with Bronfenbrenner’s theory, adjustment to diagnosis occurs across system levels including individual (child / parent), family (immediate / extended), healthcare, schools/ other societal contexts and is influenced by culture and sociodemographics. Themes reflected in parent distress included guilt, present and future worry, and overwhelm of information. Experiences varied depending on timing and severity of symptoms at diagnosis (e.g. DKA). Parent distress was high at baseline (PAID M = 47.84, SD = 17.13, clinical cutoff = 40). Conclusion: The first year of a child’s diagnosis of T1D is a time of heightened stress for primary caregivers. Healthcare professionals and the diabetes community should address parental guilt and worry and overwhelm of information. Parent / caregiver perspectives can inform interventions and provide insight for supporting families. We will share strategies addressed in The T1D Parent Check-in and discuss potential implications for diagnosis in early (e.g. via screening) versus late-stage T1D. Disclosure E. O'Donnell: Consultant; Current; Eddii Inc. W. Grolnick: None. K. Garvey: Speaker's Bureau; Ended; Tandem Diabetes Care, Inc. G. Ding: None. A.J. Wheelock: None. D. Mitra: None. N. Doble: None. A.J. Caruso: None. Funding Breakthrough T1D

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