Clinician-patient-family decision-making and health literacy in adolescents and young adults with cancer and their families: A systematic review of qualitative studies

Danielle Gessler; Ilona Juraskova; Ursula M Sansom-Daly; Heather L Shepherd; Pandora Patterson; Danielle Marie Muscat

doi:10.1002/pon.5110

Clinician-patient-family decision-making and health literacy in adolescents and young adults with cancer and their families: A systematic review of qualitative studies

Psychooncology. 2019 Jul;28(7):1408-1419. doi: 10.1002/pon.5110. Epub 2019 Jun 6.

Authors

Danielle Gessler^{1

2

3}, Ilona Juraskova^{1

2

3}, Ursula M Sansom-Daly^{4

5

6}, Heather L Shepherd^{1

2

3}, Pandora Patterson^{7

8}, Danielle Marie Muscat⁹

Affiliations

¹ School of Psychology, The University of Sydney, Sydney, New South Wales, Australia.
² Centre for Medical Psychology and Evidence-Based Decision-Making (CeMPED), The University of Sydney, Sydney, New South Wales, Australia.
³ Psycho-Oncology Cooperative Research Group (PoCoG), School of Psychology, The University of Sydney, Sydney, New South Wales, Australia.
⁴ Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
⁵ School of Women's and Children's Health, UNSW Sydney, Sydney, New South Wales, Australia.
⁶ Sydney Youth Cancer Service, Prince of Wales Hospital, Randwick, New South Wales, Australia.
⁷ Cancer Nursing Research Unit, The University of Sydney, Sydney, New South Wales, Australia.
⁸ Research, Evaluation, and Social Policy Unit, CanTeen Australia, Newtown, New South Wales, Australia.
⁹ Sydney Health Literacy Lab, School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.

PMID: 31108019
DOI: 10.1002/pon.5110

Abstract

Objective: Engaging in shared decision-making may be particularly difficult for adolescents and young adults with cancer (AYAs), possibly because of 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 synthesized qualitative studies that explored the process of decision-making and characterized 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 analyzed thematically using Framework analysis.

Results: Seven thousand two hundred seventy-three studies were screened, and 14 eligible studies were included. The synthesized themes aligned with the Supported Health Literacy Pathway model³ 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.

Keywords: adolescents; cancer; distributed health literacy; oncology; shared decision-making; young adults.

Publication types

Systematic Review

MeSH terms

Adaptation, Psychological
Adolescent
Decision Making*
Female
Health Behavior*
Health Literacy / methods*
Humans
Neoplasms / psychology*
Patient Education as Topic / methods*
Qualitative Research
Young Adult