Current understanding of decision-making in adolescents with cancer: A narrative systematic review

Background: Policy guidance and bioethical literature urge the involvement of adolescents in decisions about their healthcare. It is uncertain how roles and expectations of adolescents, parents and healthcare professionals influence decision-making and to what extent this is considered in guidance. Aims: To identify recent empirical research on decision-making regarding care and treatment in adolescent cancer: (1) to synthesise evidence to define the role of adolescents, parents and healthcare professionals in the decision-making process and (2) to identify gaps in research. Design: A narrative systematic review of qualitative, quantitative and mixed-methods research. We adopted a textual approach to synthesis, using a theoretical framework of interactionism to interpret findings. Data Sources: The databases MEDLINE, PsycINFO, SCOPUS, EMBASE and CINHAL were searched from 2001 through May 2015 for publications on decision-making for adolescents (13-19 years) with cancer. Results: Twenty-eight articles were identified. Adolescents and parents initially find it difficult to participate in decision-making due to a lack of options in the face of protocol-driven care. Parent and adolescent preferences for information and response to loss of control vary between individuals and over time. No studies indicate parental or adolescent preference for a high degree of independence in decision-making. Conclusion: Striving to make parents and adolescents fully informed or urge them towards more independence than they prefer may add to distress and confusion. This may interfere with their ability to participate in their preferred way in decisions about care and treatment. Future research should include analysis of on-ground interactions among parents, adolescents and clinicians across the trajectory.