1. Evaluating Interventions to Support Child-Parent Involvement in Health Decisions Bryan G. Feenstra, RN, MScN Committee: Dawn Stacey Margaret Lawson Denise Harrison

2. Systematic Review Objective To explore the characteristics and effectiveness of interventions that support the decision making needs of children who are actively considering a health-related decision. Feenstra et al., 2014, BMC Pediatrics

3. IncludedExcluded Participants Children (<18 years) who are facing a health-related decision Decisions about participation in health research Children not treated as active participants in decision making or decisions not directly pertaining to their health Hypothetical decisions Interventions Interventions to support children’s decision making needs. Interventions that support only the information needs of children Comparator Usual care or any alternative, including doing nothing Outcomes Outcomes that affect: quality of the decision decision making process Studies that do not report at least one of the outcomes relating to the quality of the decision or the decision making process Design Randomized controlled trials Non-randomized controlled trials Interrupted time series Controlled before-and-after Qualitative studies, descriptive studies, cohort studies Editorials, opinion articles Feenstra et al., 2014, BMC Pediatrics

4. Systematic Review: Results Study Selection Records identified from database search (n= 6051) Citations after duplicates removed (n=4313) Full text articles assessed for eligibility (n=112) Studies included in qualitative synthesis (n=5 in 6 papers) Feenstra et al., 2014, BMC Pediatrics

5. Systematic Review: Studies included Author (Year) Study Design DecisionRisk of Bias Rhee 2008 RCTPartaking in risk behaviors Lower Lyon 2009 (a, b) RCTEnd of life decision making Lower Adams 2009 RCTSun exposure vs. sun protection Unclear Hollen 1999 CBAPartaking in risk behaviors Higher Adelman 1990 Non- randomized CT Psycho-educational decision making Higher Feenstra et al., 2014, BMC Pediatrics

6. ComparisonsCoaching only v. Attention placebo/ No intervention Coaching + Aid v. Attention placebo/ No intervention Education only v. Attention placebo/ No intervention Trials Lyon 2009 (a, b), Adelman 1990 Adams 2009, Rhee 2008 Hollen 1999 Decision Quality Overall Quality of Decision Making No diff [R] [H] Agreement between values and chosen option [A] Congruence preference between child and parent [L] Decision Making Process Satisfaction with DM process [L] No diff [A] Participation in DM process No diff [A] Decisional conflict No diff [L] Communication No diff [L]

7. Pilot Study Objective To evaluate the feasibility and acceptability of decision coaching for children and parents considering insulin options for type 1 diabetes management. Insulin pump vs. standard insulin therapy, vs. multiple daily injections for management of type 1 diabetes

10. What is decision coaching? Develops patients’ skills in: - thinking/deliberating about options - preparing for a consultation - implementing change Coaches are trained to be supportive but non-directive (O’Connor et al., 2008; Stacey et al., 2008; 2013)

11. 11 Coaching (n=10 trials) : - improved knowledge compared to usual care - improved knowledge similar to decision aid group - improved or no difference on other outcomes (values-choice agreement, satisfaction, participation, costs) Medical Decision Making, 2012

12. Pilot Study: Results Child (N=7)Parent (N=9) Age Median (range)15 (9-17)44 (29-54) Sex Male Female 4343 4545 EducationGrade 4 to 12High school to university graduate Marital status8 married 1 divorced Diabetes diagnosis > 6 months to > 5 years

13. Pilot Study: Results Feasibility of DesignPercentage (n/N) Recruitment Families recruited Families attended coaching Families missed coaching Decision coach unavailable 75.0 % (12/16) 58.3 % (7/12) 16.7 % (2/12) 25.0 % (3/12) Questionnaire response ratesChildParent Baseline100% (7/7) Immediately after coaching100% (7/7) <2 weeks following coaching85.7% (6/7) Missing data on study questionnaires 1.5% (5/340 items) 0.3% (1/349 items) Length of time : Median (range)35 minutes (21-38 minutes)

14. Acceptability of coaching intervention Child (n=6) Parent (n=8) Decision coach seemed to understand stresses I was facing 3 8 The decision coach helped me to identify what we needed to know to make decisions about what would happen to me. 48 I felt better about my decision after meeting with the decision coach. 2 8 The decision coach was truly concerned about my well-being. 5 7 The decision coaching session was valuable to me. 1 5 Decision coaching helped come to a preferred option 2 7 Willing to recommend decision coaching to others 5 8 The decision coaching session was about the right length of time. 3 4 This session prepared for a follow up with your health care provider 6 8

15. Summary of findings 1.Decision Support studies with children Few available studies compared to adult population First intervention to support multiple stakeholders 2.Complexities of dyad/triad relationship Differences between parents and children 3.Success of interventions with younger participants Minimal missing info Children as young as 9 years 4.BUT must target them sooner in the decision making process