Supporting Distributed Health Literacy and Family-based decision making in Adolescents and Young Adults with Cancer

Abstract

Background/Aims. Health literacy represents a pre-requisite to empowerment and participation in health-related decision-making. Yet, in adolescent and young adult cancer patients and survivors (AYAs), both health literacy and decision-making processes remain largely understudied. Given that health literacy skills are commonly often distributed across an individuals’ networks, parents and families may play a key role in either bolstering or compensating for an AYAs’ health literacy skills. The research aimed to qualitatively explore health literacy from the perspective of health professionals working with AYAs.

Methods. This thesis involved two qualitative research studies exploring the perspectives of health professionals working with AYAs. Interviews with 30 health professionals examined their understanding of the construct of health literacy in AYAs, as well as their perspectives of how family members are involved in processes related to how AYA health literacy is acquired and used.

Results. Qualitative study results revealed significant variability in how health professionals understood health literacy as a general construct and highlighted the potential implications of divergent practices in how health professionals aimed to enhance AYA health literacy. Our results supported the relevance of the model of distributed health literacy in this cohort.

Conclusion. By illustrating the process of triadic decision-making across families, AYAs and their clinicians, these research findings can inform the development of shared decision-making frameworks for communicating health information to AYAs and their families. Extending the distributed health literacy framework to the AYA setting can serve as a valuable resource for enhancing the development and utilisation of health literacy among AYAs, indicating that system-based strategies may be effective in empowering AYAs in managing their healthcare.