Adolescents' preferences for treatment decisional involvement during their cancer.
BACKGROUND
This qualitative study investigated the medical decision-making preferences of adolescent oncology patients and the parental and clinician behaviors that adolescents report to be supportive of their preferred level of decision-making involvement.


METHODS
Interviews were conducted with 40 adolescents between the ages of 12 and 18 years who were undergoing cancer treatment in Memphis, Tenn or Washington, DC. Role preferences were converted into a predetermined Likert scale decisional preference score. A semantic content analysis was used to analyze patient reports of parental behaviors, attitudes, knowledge levels, and relational interactions that facilitated their preferred level of involvement in decision making. Clinician behaviors described as supportive of decisional processes were also categorized thematically. A teen advisory council validated study findings. Data reporting followed strict adherence to Consolidated Criteria for Reporting Qualitative Research guidelines.


RESULTS
Adolescents indicated a spectrum of preferred decisional roles, with the most common being an actively involved role (26 of 40 or 65%), although a shared decision-making approach was still valued. There was no statistically significant difference in the preferred decisional role with respect to demographic or medical characteristics, including the relapse status, although adolescents who preferred autonomous interview settings were more likely to prefer active decisional roles (P < .001). Adolescents recognized that situational and social contexts might shift their preferred level of involvement in medical decisions. Although adolescents wanted to be involved in decisions, they also expressed an appreciation of family insight, parental presence, and clinician guidance.


CONCLUSIONS
Adolescents with cancer are able to retrospectively identify their preferences for inclusion in medical decision making, and even when preferring involvement, they value the input of trusted others.
Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee.|Department of Oncology, Children's National Health System, Washington, DC.
Meaghann S
MS
Weaver
Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee.
Justin N
JN
Baker
Department of Nursing Research, St. Jude Children's Research Hospital, Memphis, Tennessee.
Jami S
JS
Gattuso
Division of Quality of Life and Palliative Care, Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee.
Deborah V
DV
Gibson
Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, Tennessee.
April D
AD
Sykes
Department of Nursing Research and Quality Outcomes, Children's National Health System, Washington, DC.|Department of Pediatrics, George Washington University, Washington, DC.
Pamela S
PS
Hinds
D000293:Adolescent; D002648:Child; D003142:Communication; D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D010358:Patient Participation; D057240:Patient Preference; D010817:Physician-Patient Relations; D036301:Qualitative Research
adolescent; communication; decision making; oncology; qualitative research