Aims Much research undertaken on decision-making with teenagers with cancer has focused on the retrospective reports of experiences of healthcare professionals (HCP) and parents (Miller 2012, Woodgate 2010, Stevens 2002, Stenmarker 2010, Matsuoka 2012). We aimed to understand the complex process of decision-making that takes place between HCP and teenagers, as it unfolds in real-time clinical practice for decisions regarding the care and treatment of leukaemia.
Methods Participant-observation, informal conversations, and open-ended semi-structured interviews took place over a 9 month period at one tertiary referral centre in the UK. Seven teenagers, 15 family members and 60 HCP were recruited. Here we focus on data collected from observations of consultations (147), and interviews/informal conversations with teenagers (86).
Results Interviews and observations showed that teenagers attempted strategies to present their care and treatment preferences in clinical consultations and assign roles to parents and HCP. Further, observations revealed that HCP attempted multiple strategies to elicit and respond to teenagers’ care and treatment preferences, assign responsibility to teenagers and manage information exchange. Notwithstanding the presence of these elements of shared decision-making, teenagers’ care and treatment preferences rarely determined the outcome of decisions; decisions were more frequently made in line with the clinical consensus of the ‘right thing to do’. HCP were thus the final decisional authority, a fact recognised by teenagers. Despite the fact that teenagers recognised that their care and treatment preferences (whether given or sought) were rarely acted on, and that parents and HCP engaged in discussions without teenagers present, teenagers reported satisfaction with their involvement in decision-making. They accepted and were even comfortable with the final decision residing with HCP.
Conclusion For teenagers, involvement does not centre on their decisional authority or independence in principle or practice. HCP need not turn decision-making over to teenagers to involve them. Involvement is a dynamic, interactive process during which HCP and teenagers employ multiple strategies to negotiate the role of teenagers in real time. HCP should acknowledge the actual decisional authority teenagers hold so as not to overstate the role of teenagers’ care and treatment preferences.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.