Clinician-patient-family decision-making and health literacy in adolescents and young adults with cancer and their families: A systematic review of qualitative studies
A partir d'une revue systématique de la littérature (14 études qualitatives), cette étude analyse, chez des patients adolescents et jeunes adultes atteints d'un cancer et chez leur famille, leurs capacités à comprendre l'information en santé, puis analyse le processus de prise de décision thérapeutique partagée par le médecin, le patient et sa famille
Objective : Engaging in shared decision-making may be particularly difficult for adolescents and young adults with cancer (AYAs), possibly due to lower levels of health literacy. Family members of AYAs are likely to support decision-making about their healthcare by contributing to health literacy skills/practices, however the nature of this process is unclear. This systematic review synthesised qualitative studies that explored the process of decision-making and characterised how AYA healthcare information is shared, from the perspective of the AYA and their family members. Methods : Electronic searches of EMBASE, MEDLINE, PsycINFO and CINAHL were conducted in May 2018. Peer-reviewed studies discussing the decision-making process in AYAs and/or their families were eligible for inclusion. Findings were analysed thematically using Framework analysis. Results : 7273 studies were screened and 14 eligible studies were included. The synthesised themes aligned with the Supported Health Literacy Pathway model (Edwards et al., 2015) in that AYAs draw on their family members' knowledge, skills and practices to generate informed options and make shared decisions. Families of AYAs were found to be involved throughout all stages of decision-making. The use of health literacy skills was also found to be distributed in families, such that family members of AYAs mediate access to, knowledge, and use of health information in the decision-making process. Conclusions : Our findings suggest that health literacy is a dynamic and transactional process and provide clinicians, researchers and other stakeholders with a framework to foster AYA engagement in decision-making.