Principles and Practices for Involving Teenagers in Decision-Making about their Care and Treatment: A prospective participant-observation study to inform policy and practice

Background: Much research undertaken on teenagers with life-limiting-conditions has focused on the retrospective views and experience of health care professionals (HCP) and parents (Miller 2012, Woodgate 2010, Stevens 2002, Stenmarker 2010, Matsuoka 2012). This has left a gap in the academic and clinical knowledge base regarding teenagers’ real-time perspectives of involvement and how, when or if they are involved in practice. Aims: To understand the complex process of decision-making that takes place among HCP, families and teenagers, for decisions regarding the teenager’s care and treatment. Methods: Ethnographic methods, participant-observation, informal conversation and open-ended semi-structured interviews are employed. The interactionist perspective provides the overarching theoretical framework. Data: Seven teenagers, 15 family members and 60 HCP were recruited. Data were collected from observations of consultations (147), HCP meetings (104) and informal discussions/interviews (253) with teenagers (86), parents (67), family members (6) and HCP (94). Observations were audio-recorded and transcribed verbatim. Findings: Grounded theory analysis of interviews/informal discussions identified several principles (acting on the care and treatment preferences of the teenager, doing the right thing as determined by clinical consensus, following the HCP lead, information exchange) regarding the involvement of teenagers. Observations highlighted how these principles were enacted in practice, the immutable factors (disease course, decision, treatment window, legal responsibilities) and communication practices (presentation of options, bargaining, information seeking, delegation) that determined when, how and why principles took precedence. Conclusions: Findings suggest teenagers with life-threatening-diagnoses want a different kind of involvement in decision-making than much policy advocates. Teenagers and parents express no desire for independent decision-making, nor do they encourage following the teenagers care and treatment preferences for decisions of consequence. Involvement is not static and consistent across the trajectory, nor is it dependent on chronological age. HCP and policymakers must reconsider the value of advocating one type of involvement focusing on providing ‘honest’ information, seeking teenagers’ preferences for care and treatment and following their lead