Care health literacy: a new dimension of health literacy among Iranian family care givers of children with cancer

Family caregivers’ health literacy plays a major role in providing care, symptom management, and treatment follow-up in children with cancer. Low health literacy in family caregivers can affect clinical decision-making, treatment adherence, and child clinical outcomes. The aim of this study was to explore the health literacy needs of family caregivers of children with cancer. This study was a qualitative content analysis. In-depth semi-structured individual interviews were conducted with family caregivers of children with cancer ( n = 19) and healthcare providers ( n = 7) in 2022 in one of the reference centers for pediatric hematology in Isfahan, Iran. Sampling was purposeful with maximum variation, and data were analyzed using the directed qualitative content analysis method with MAXQDA software (2010 version). The data were based on the Nutbeam health literacy model. Trustworthiness of the data was achieved using Lincoln and Guba’s (1985) criteria. After analyzing 26 interviews, 4 categories, 10 sub-categories, and 24 sub-subcategories were obtained from a total of 3,158 codes. The main categories included functional health literacy, interactive health literacy, critical health literacy (the dimensions of the Nutbeam model), and care health literacy (a new dimension). Family caregivers of children with cancer have multidimensional health literacy needs. Identifying the health literacy needs of family caregivers is an important step in planning and designing a program to improve caregivers’ health literacy, which can be effective in providing quality care to children, reducing costs, and increasing caregiver participation in child care.