Caregiver-child discrepancy in healthcare transition readiness and its associations

TL;DR

This study finds that caregivers often rate children's healthcare transition readiness higher than the children themselves, especially in younger kids and those with earlier diagnoses.

Contribution

The study identifies specific factors like child age, diagnosis age, and anxiety linked to caregiver-child discrepancies in transition readiness.

Findings

Caregivers rated children's healthcare transition readiness higher than children did themselves.

Children reported missing medications more often than caregivers did.

Higher caregiver ratings were associated with younger child age, younger diagnosis age, and greater child anxiety.

Abstract

To explore caregiver-child discrepancy in healthcare transition (HCT) readiness and its association with demographic variables, anxiety, and health services utilization in children and adolescents with chronic health conditions.

This cross-sectional study surveyed 214 caregiver-child dyads recruited from a therapeutic camp in the Southeastern United States. Children and adolescents aged 7–17 years and their caregivers completed the STARx Questionnaire to assess HCT readiness. Additionally, children rated their anxiety using the PROMIS-Anxiety scale, and caregivers reported their child’s past-year health services utilization. Paired t-tests were used to examine the caregiver-child discrepancies in HCT readiness. Correlation analyses and linear regression were used to explore factors associated with caregiver-child discrepancies in HCT readiness.

No statistically significant discrepancies were identified at the full-scale and subscale levels of the STARx Questionnaire. However, single-item level analysis showed caregiver-child discrepancies in their perception of the child’s medication adherence and disease knowledge. Caregivers generally rated children’s HCT readiness higher than children did themselves, particularly in younger children and those diagnosed at a younger age. Higher caregiver ratings were correlated with greater child anxiety.

This study revealed gaps in caregiver-child perceptions of the child’s HCT readiness. Addressing these gaps through collaborative communication, shared decision-making, and targeted interventions may improve the HCT process and outcomes. Additionally, this study showed that greater caregiver ratings were linked to younger age, younger age at diagnoses, and elevated child anxiety, calling for early, effective interventions for transition planning to mitigate differences in caregiver-child ratings and facilitate HCT.

•Caregivers generally rated children’s transition readiness higher than children.•Children report missing medications more frequently than caregivers’ proxy reports.•Higher caregiver ratings were correlated with younger child age and diagnosis age.•Higher caregiver ratings were correlated with greater child anxiety.

Caregivers generally rated children’s transition readiness higher than children.

Children report missing medications more frequently than caregivers’ proxy reports.

Higher caregiver ratings were correlated with younger child age and diagnosis age.

Higher caregiver ratings were correlated with greater child anxiety.