Decision coaching using the Ottawa family decision guide with parents and their children: a field testing study

Bryan Feenstra, Margaret L Lawson, Denise Harrison, Laura Boland, Dawn Stacey

Although children can benefit from being included in health decisions, little is known about effective interventions to support their involvement. The objective of this study was to evaluate the feasibility and acceptability of decision coaching guided by the Ottawa Family Decision Guide with children and parents considering insulin delivery options for type 1 diabetes (insulin pump, multiple daily injections, or standard insulin injections). Pre-/post-test field testing design. Eligible participants were children (≤18 years) with type 1 diabetes and their parents attending an ambulatory diabetes clinic in a tertiary children's hospital. Parent-child dyads received decision coaching using the Ottawa Family Decision Guide that was pre-populated with evidence on insulin delivery options, benefits, and harms. Primary outcomes were feasibility of recruitment and data collection, and parent and child acceptability of the intervention. Of 16 families invited to participate, 12 agreed and 7 attended the decision coaching session. For the five missed families, two families were unable to attend the session or the decision coach was not available (N=3). Baseline and immediately post-coaching questionnaires were all completed and follow-up questionnaires two weeks post-coaching were missing from one parent-child dyad. Missing questionnaire items were 5 of 340 items for children (1.5%) and 1 of 429 for parents (0.2%). Decision coaching was rated as acceptable with higher scores from parents and their children who were in earlier stages of decision making. Decision coaching with children and their parents considering insulin options was feasible implement and evaluate in our diabetes clinic and was acceptable to participants. Recruitment was difficult due to scheduling restrictions related to the timing of the study. Coaching should target participants earlier in the decision making process and be scheduled at times that are convenient for families and coaches. Findings were used to inform a full-scale evaluation that is currently underway.