Caregiver Perspectives of New Diagnosis Education in Pediatric Oncology Through the Lens of Health Literacy and Social Determinants of Health

Background Caregivers of children with cancer receive new diagnosis education (NDE) to guide home care. Health literacy (HL) and social determinants of health (SDoH) may affect the caregiver-reported educational experience of receiving NDE. Objective To explore caregiver NDE experiences through the lens of HL and SDoH. Methods Caregivers with a child <18 years old receiving cancer treatment who completed a survey assessing their SDoH across 5 domains (≥1 = adverse), HL level (limited vs adequate), and NDE (favorable vs unfavorable) were purposively selected to participate in semistructured interviews. Two researchers independently coded transcripts and identified themes and subthemes. Results Data from 19 caregivers (78.9% mothers; median age, 35.3 years) of children (52.6% with leukemia; median age, 4.3 years) were included; 31.6% of caregivers had limited HL; 57.9% had adverse SDoH. Five themes emerged: (1) process of receiving NDE, (2) ways of learning, (3) sources of information, (4) caregiver readiness, and (5) deficits in provision of NDE. Caregivers shared many similar positive and challenging NDE experiences regardless of HL level or SDoH exposure. Differences in ways of learning were identified based on HL. Caregivers with adequate HL relied on written materials, whereas caregivers with limited HL relied on hands-on learning techniques and observation. No differences in NDE experiences related to SDoH were identified. Conclusions Caregivers shared many similar NDE experiences across HL levels and SDoH exposures; however, differences in ways of learning based on HL were identified. Implications for Practice Caregiver HL level should be assessed prior to NDE to inform tailoring of educational strategies.