Introduction and Aims: Health literacy represents a pre-requisite to empowerment and participation in health-related decision-making, yet health literacy and decision-making remain largely understudied in the adolescent and young adult with cancer (AYA) population. Given the distributed nature of health literacy skills across an individuals’ networks, parents and families may serve as mediators to improve an AYA’s health literacy skills, or to compensate for poorer health literacy. Health decisions in this population also routinely involve AYAs, their parents and their healthcare professionals. The objective of this systematic review was to identify empirical research studies that have addressed how AYAs, and/or their families are involved in information sharing and the process of decision-making about the AYAs healthcare.
Method: Systematic literature review was conducted on 16th May 2018 using PsycINFO, MEDLINE, EMBASE and CINAHL. Duplicates were removed and articles screened for exclusion criteria (i.e., populations outside the target AYA-age range (15-39 years old) and other than cancer; articles addressing end-of-life decision-making, onco-fertility and screening/prevention studies; unpublished works, editorials, case-series, reviews or meta-analyses). Peer-reviewed studies discussing the decision-making process in AYAs and/or their families were eligible for inclusion, as were studies addressing information sharing, decision-making preferences, and health literacy within this group. Data was extracted using Endnote and appraised by two independent raters. Findings were synthesised thematically.
Results: A total of 7273 studies (after removing 1801 duplicates) were screened using title and abstract. Of those, 706 full text studies were screened, resulting in a final list of 33 studies to be assessed for quality. Of the 33 studies, 19 were qualitative, 12 quantitative and 2 mixed-methods research. Preliminary themes derived from the review include: AYA self-management, the process of information sharing, decision-making preferences, empowerment in treatment decision-making, and family involvement in the decision-making process.
Discussion and Conclusions: To our knowledge, this is the first systematic review providing a comprehensive summary of the evidence regarding the information sharing and decision-making process in the AYA population. Elucidating the nature of family involvement in AYAs decision-making process is particularly relevant, as many parents/families may facilitate communication and serve as mediators to improve or compensate for AYAs health literacy skills.