"We just follow the patients' lead": Healthcare professional perspectives on the involvement of teenagers with cancer in decision making.

Abstract

We report on an in-depth interview and participant observation study that uses data from multiple sources to determine how the involvement of teenagers with leukaemia is understood and enacted in healthcare. In this article, we investigate healthcare professionals' (HCP) views of teenagers' involvement in decisions about their care and treatment for leukaemia. We conducted participant observation at 98 multi-disciplinary meetings and 95 open-ended, semi-structured interviews and informal conversations with clinical teenage cancer teams at one UK tertiary referral centre. Data were collected over a 9-month period, audio-recorded, transcribed verbatim and analysed using principles of grounded theory. HCP revealed principles relating to the involvement of teenagers with leukaemia in decision making: (1) do the 'right thing', (2) act on the care and treatment preferences of the teenager and (3) openly disclose information about the teenagers' condition. These principles were prioritised and utilised uniquely in each situation, reliant on three mediating factors: (1) family communication styles, (2) stage of illness and (3) nature of the disease. Specialist haematology teams are aware of the individual, and shifting and situational preferences of teenagers. They follow the lead which teenagers give them with regard to these preferences. If actual practice with regard to the involvement of teenagers is found to be wanting, this study refutes that this should be ascribed to insensitivity on the part of HCP about teenagers informational and decisional role preferences.