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Treatment Decision-Making Involvement in Adolescents and Young Adults With Cancer

Kimberly A. Pyke-Grimm

Linda S. Franck

Katherine Patterson Kelly

Bonnie Halpern-Felsher

Robert E. Goldsby

Ari Kleiman

Roberta S. Rehm

adolescent and young adult, pediatric oncology, decision making, patient participation
ONF 2019, 46(1), E22-E37. DOI: 10.1188/19.ONF.E22-E37

Problem Identification: Involvement in treatment decision making (TDM) is considered a key element of patient- and family-centered care and positively affects outcomes. However, for adolescents and young adults (AYAs) with cancer, little is known about the current state of knowledge about their perspective on and involvement in TDM or the factors influencing AYAs’ TDM involvement.

Literature Search: Integrative review focused on AYAs aged 15–21 years, their involvement in TDM, and factors influencing their involvement using the MEDLINE®, PsycINFO®, CINAHL®, and Web of Science databases.

Data Evaluation: 4,047 articles were identified; 21 met inclusion criteria.

Synthesis: Five factors were identified: AYAs’ preferred, actual, and perceived involvement; age and cognitive maturity; disease and illness factors; information and communication; and relationships, roles, and perspectives of parents and healthcare providers. AYA involvement in TDM varies depending on the magnitude and timing of the decision. AYAs’ role in decision making is situational and may evolve with time.

Implications for Research: Research is needed to understand AYAs’ preferences for TDM, the type and degree of their involvement, and the interactions between factors that contribute to or impede TDM.

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