title: The adolescent perspective on participation in treatment decision making: a pilot study.
abstract: Few research studies have obtained data directly from the adolescent with cancer regarding decision making. The developmental stage of these patients focuses on developing independence, yet the health care decisions required for cancer treatment preclude independent decision making. The purpose of this pilot, or exploratory, study was to determine whether the research question is appropriate and whether participants between 13 and 15 years of age were capable of providing rigorous data. The results suggest that treatment decision making was not a concern for these patients and that they were capable and appropriate study participants. Semistructured interviews were performed with 3 adolescents diagnosed with cancer within the previous 3 to 6 months. These data were qualitatively analyzed using Colaizzi's technique, which identified themes perceived as critical by these participants. Independent behavior, such as decision making, is not relevant at this health care juncture. However, support, information, and education are desired. These should be routinely available using means appropriate for adolescents. Infusing information and education into the health care plan from time of diagnosis may allow the adolescent to become knowledgeable about the disease process. This may enable him or her to participate in health care treatment decisions, when appropriate.
authors.affiliation: Children's Mercy Hospitals and Clinics, Kansas City, Missouri. kstegenga@cmh.edu
authors.forename: Kristin
authors.initials: K
authors.lastname: Stegenga
authors.forename: Peggy
authors.initials: P
authors.lastname: Ward-Smith
mesh_terms: D000293:Adolescent; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D010358:Patient Participation; D010865:Pilot Projects