Health literacy has been conceptualised as acquired and used via family and clinician networks that surround adolescents and young adults with cancer (AYAs). However, the role of family members and clinicians in the AYA process of becoming health literate is not well understood. We explored the distributed nature of health literacy in AYA-family-clinician networks, from the perspective of AYA clinicians.
Semi-structured qualitative interviews were conducted with clinicians working with AYAs aged 15-25 years old. Primary recruitment took place at the 3rd Global Adolescent and Young Adult Cancer Congress and subsequent snowball sampling was used. Interviews were recorded and transcribed, to allow for coding and Framework Analysis.
Thirty clinicians (oncologists, N=8; nurses, N=11; clinical psychologists, N=6; social workers, N=2; other, N=3) from Australia, Belgium, New Zealand, United Kingdom and United States of America participated. According to clinicians, the process of becoming health literate is supported by clinician and family networks. Our findings mapped to the model of distributed health literacy, such that systems surrounding an AYA were involved in sharing health knowledge, communicating health information, weighing up options and shared decision-making. Clinicians perceived that health literacy in AYAs requires a requisite level of health knowledge and understanding and functions to empower and engage AYAs in their care. Clinicians also identified that psychological distress, family dynamics and cultural/linguistic considerations interfered with the acquisition and use of health literacy skills.
These findings provide valuable insights into how clinicians perceive health literacy skills are acquired and demonstrated by AYAs during their cancer care and provide support for the distributed health literacy framework in AYAs. Using a distributed health literacy framework offers a potential resource for supporting the acquisition and use of health literacy in AYAs and suggests that system-based approaches may be used to empower AYAs in their healthcare.