Health Literacy Interventions for Informal Caregivers: Systematic Review

Aim: The aim of the systematic review was to identify conceptual models and interventions designed to improve health literacy in caregivers of adults with a chronic disease/disability.

Methods: MEDLINE, CINAHL, PsycINFO and Embase were searched for relevant literature. Articles were included if they focused on adults who provided informal care to someone aged 18+ with a chronic disease/disability. Quantitative studies were included if they reported an intervention designed to improve caregiver health literacy (CHL) and assessed outcomes using a validated measure of health literacy. Qualitative and mixed method studies were included if they described a conceptual model or framework of CHL or developed/assessed the feasibility of an intervention. Study quality was appraised using the Mixed Methods Assessment Tool.

Results: Eleven studies were included. Five studies used pre-post design to assess outcomes of an intervention; four described intervention development and/or pilot testing; two described conceptual models. Two of five studies reported pre-post intervention improvements in CHL; one reported an improvement in one of nine health literacy domains; two reported no improvements following intervention. Interventions predominantly aimed to improve: caregiver understanding of the disease, treatment and potential outcomes, day-to-day care, self-care and health provider engagement. Few interventions targeted broader interpersonal and health service factors identified as influencing CHL.

Discussion: Evidence on the development and assessment of comprehensive CHL interventions is scarce. Recommendations include the development of interventions that are guided by a CHL framework to ensure they address individual, interpersonal and health service/provider factors that influence CHL.