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Abstract
When a child is diagnosed with cancer, their caregiver receives new diagnosis education (NDE) focused on safe home care of the child; however, this caregiver-reported educational experience of receiving NDE is understudied. Among factors that may influence caregiver acquisition of NDE are caregiver health literacy (HL) and social determinants of health (SDoH).
The aim of this explanatory sequential (quan→QUAL) mixed methods study was to understand caregiver experiences of receiving NDE in pediatric oncology through the lens of HL and SDoH. In the quantitative phase, survey data were used to characterize caregiver HL levels, SDoH exposures, and caregiver-reported educational experience (CREE) ratings and to determine the relationship between these variables. In the qualitative phase, semi-structured interviews were employed to understand caregiver NDE experiences through the lens of HL and SDoH. Purposive sampling based on HL levels and SDoH exposures ascertained in the quantitative phase was used to identify caregivers for interviews. In the integration phase, qualitative interview results were used to explain CREE ratings across HL levels and SDoH exposures.
Sixty-seven caregivers participated in the quantitative phase (mothers: 77.6%; non-Hispanic white: 65.7%; median [range] age: 34 [20-69] years; limited HL: 35.8%; adverse SDoH exposure: 71.6%; unfavorable CREE: 40.3%). Caregivers with adequate HL were more likely to rate CREE unfavorably than those with limited HL (adjusted Odds Ratio [aOR]=8.0, 95%CI=1.9-34.4, p =.005). Caregivers with adverse SDoH were more likely to rate CREE unfavorably than those without adverse SDoH exposures (aOR=6.3, 95%CI=1.4-28.7, p =.017).
Nineteen caregivers participated in the qualitative phase. We identified five overarching themes: (1) process of receiving NDE, (2) ways of learning, (3) sources of information, (4) caregiver readiness, and (5) deficits in provision of NDE. We found that caregivers shared many common experiences of receiving NDE across HL levels and SDoH exposures, and that these experiences were generally positive.
Through results integration, we found that caregivers with limited HL relied on hands-on learning techniques and observation, while caregivers with adequate HL relied on written materials and sought additional information, suggesting the importance of determining caregiver HL level prior to initiation of new diagnosis education. Future, multi-institutional studies are needed to refine new diagnosis education in pediatric oncology within the context of caregiver HL and SDoH.
