Identifying the carers’ profiles of health literacy, eHealth literacy and caregiving concepts

Abstract Background Carers of people with dementia (PwD) undertake the role of supporting their relatives in everyday life and caring tasks, sometimes without adequate knowledge of the progression of the disease, practical advice and support mechanisms or services. This study aims to describe the Health Literacy (HL) and eHealth Literacy (eHL) profiles of carers of PwD in Greece and Cyprus and to explore associations with dimensions influenced by the delivery of care. Methods This descriptive correlational design study measured HL (HLS-EU-Q16 tool), eHL (eHeals-Carer) and dimensions of care (Brief-COPE, caregiving self-efficacy, COPE index and Multidimensional Perceived Social Support). In total, 174 primary carers of PwD and 67 secondary carers participated in a face-to-face survey. Correlation and regression analysis were performed to explore associations between the concepts of interest and cluster analysis (N = 123) to identify profiles of carers. Results Carers, primary and secondary, reported high scores of eHL and HL. HL scores were associated with eHL and both variables with the two dimensions of caregiving self-efficacy: “obtain respite” and “behavior management”. Three carers' profiles were identified: 1) carers with high levels of HL, eHL, Self-Efficacy and low coping strategies, 2) carers with problematic coping, negative caregiving perceptions, and lower HL and eHL, and 3) carers with high HL and eHL, with strong Social Network, high emotional-focused coping strategies and low problematic coping. Conclusions Understanding the role of HL and eHL in the caregiving process and identifying carers' profiles could assist healthcare professionals in their educational role with families and planning of care. There is a need to develop more ways to assess these concepts for this population and to develop training courses focusing on enhancing the HL skills of carers and healthcare professionals. The COST action NET4AGE-friendly supported the conference participation. Key messages HL and eHL are related to the caregiving role and may not only influence health-related decisions made by the carers on behalf of their relatives but also their own self-efficacy and coping. HL and eHL should be appropriately assessed and taken into consideration by healthcare professionals in management plans for PwD and their families.