Evaluating Interventions to Support Child-Parent Involvement in Health Decisions

Bryan G. Feenstra

,

RN, MScN

Committee:

Dawn Stacey Margaret Lawson Denise Harrison

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

Participants Interventions

• • •

Included

Children (<18 years) who are facing a health-related decision Decisions about participation in health research Interventions to support children’s decision making needs. • • •

Excluded

Children not treated as active participants in decision making or decisions not directly pertaining to their health Hypothetical decisions Interventions that support only the information needs of children

Comparator Outcomes Design

• • • • • • Usual care or any alternative, including doing nothing Outcomes that affect: • quality of the decision • decision making process Randomized controlled trials Non-randomized controlled trials Interrupted time series Controlled before-and-after Feenstra et al., 2014, BMC Pediatrics • • • Studies that do not report at least one of the outcomes relating to the quality of the decision or the decision making process Qualitative studies, descriptive studies, cohort studies Editorials, opinion articles

•

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

Systematic Review: Studies included

Author (Year) Rhee 2008 Lyon 2009 (a, b) Adams 2009 Hollen 1999 Adelman 1990 Study Design

RCT RCT RCT CBA Non randomized CT Feenstra et al., 2014, BMC Pediatrics

Decision

Partaking in risk behaviors End of life decision making Sun exposure vs. sun protection Partaking in risk behaviors Psycho-educational decision making

Risk of Bias

Lower Lower Unclear Higher Higher

Comparisons Trials Decision Quality

Overall Quality of Decision Making Agreement between values and chosen option Congruence preference between child and parent

Decision Making Process

Satisfaction with DM process Participation in DM process Decisional conflict Communication

Coaching only v. Attention placebo/ No intervention Lyon 2009 (a, b), Adelman 1990 Coaching + Aid v. Attention placebo/ No intervention Adams 2009, Rhee 2008 Education only v. Attention placebo/ No intervention Hollen 1999

  [L] [L] No diff [A] No diff [A] No diff No diff [L] [L] No diff [R]  [A]  [H]

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

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)

Medical Decision Making, 2012

Coaching (n=10 trials) : - improved knowledge compared to usual care - improved knowledge similar to decision aid group - improved or no difference on other outcomes

Age

Median (range)

Sex

Male Female

Education Marital status

Pilot Study: Results

Child (N=7) Parent (N=9)

15 (9-17) 4 3 Grade 4 to 12 44 (29-54) 4 5 High school to university graduate 8 married 1 divorced

Diabetes diagnosis

> 6 months to > 5 years

Pilot Study: Results

Feasibility of Design Recruitment

Families recruited Families attended coaching Families missed coaching Decision coach unavailable

Questionnaire response rates

Baseline Immediately after coaching <2 weeks following coaching Missing data on study questionnaires

Length of time :

Median (range)

Percentage (n/N) Child

75.0 % (12/16) 58.3 % (7/12) 16.7 % (2/12) 25.0 % (3/12)

Parent

100% (7/7) 100% (7/7) 100% (7/7) 100% (7/7) 85.7% (6/7) 85.7% (6/7) 1.5% (5/340 items) 0.3% (1/349 items) 35 minutes (21-38 minutes)

Acceptability of coaching intervention Decision coach seemed to understand stresses I was facing The decision coach helped me to identify what we needed to know to make decisions about what would happen to me.

Child (n=6)

3 4

I felt better about my decision after meeting with the decision coach.

2

The decision coach was truly concerned about my well-being.

The decision coaching session was valuable to me.

Decision coaching helped come to a preferred option Willing to recommend decision coaching to others The decision coaching session was about the right length of time.

This session prepared for a follow up with your health care provider

5 1 3 6 2 5

Parent (n=8)

8 8 8 7 5 4 8 7 8

Summary of findings

1.

2.

3.

4.

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