Collective caregivers: A novel examination of health literacy management approaches

ObjectiveHealth 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.MethodsSemi-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.ResultsThe 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).ConclusionsHealth literacy support should address aspects of the family system such as caregiver-caregiver communication which influence variance in health literacy management.Practice implicationsOur study can inform provider communication and healthcare interventions aimed at supporting health literacy for caregivers.