Collective caregivers: A novel examination of health literacy management approaches

Objective Health literacy and communication skills are necessary for family caregivers who often work in pairs, known as collective caregiving. Health literacy management is a relational process where communication between caregivers can be a barrier or pathway to improving or co-creating health literacy. The purpose of this study was to examine how collective caregivers manage health literacy. Methods Semi-structured interviews were conducted separately for 42 caregiving pairs (n = 84). The interview guide was developed using a cancer caregiver health literacy framework. Caregiving pairs were placed into one of three collective caregiving communication patterns (absolute concordant, semi-concordant, absolute discordant). Interviews were audio-recorded, transcribed, and a thematic analysis was performed by independent coders. Results The analysis revealed three different health literacy management approaches: a defined approach where caregiver roles were clearly designated (absolute concordant pairs); a contrasting approach where one caregiver was the health literacy expert (semi-concordant pairs); an independent approach characterized by individual information seeking, processing, and patient/provider engagement (absolute discordant pairs). Conclusions Health literacy support should address aspects of the family system such as caregiver-caregiver communication which influence variance in health literacy management. Practice implications Our study can inform provider communication and healthcare interventions aimed at supporting health literacy for caregivers.