Jun 07, 2021, By: Bonnie Wooten, Craig Campbell
- Families of children with health conditions often feel the advice received by health-care providers is insufficient to make decisions about care options. Shared decision-making utilizing an impartial decision coach outside the direct circle of care aims to create an environment in which families and clinicians work in partnership.
- This program evaluation of eight families found a decision coach reduced decisional conflict and increased decision satisfaction.
- Access to shared decision-making resources supports families in gaining knowledge, evaluating the benefits and drawbacks, and clarifying what matters most — all of which are integral to a positive patient experience.
This article describes a program evaluation that was designed to analyze the impact of a nurse acting as a shared decision-making (SDM) coach, outside the direct circle of care, for pediatric patients and families.
The evaluation was a one-year retrospective study of families dealing with a medical or surgical decision who were referred to an SDM coach at a Canadian pediatric tertiary care centre. Standardized outcome measures included the Preparation for Decision Making (PrepDM) scale, the pre/post SURE test and the Decisional Conflict Scale (DCS). A standardized parent measurement tool was used to assess respondents’ satisfaction with the SDM coach. Eight families were included.
The SURE test scores increased by 1.5 points (pre-SURE: median* = 2.50 (2.00–4.00); post-SURE: median = 4 (3.00–4.00), p = .08). The primary issue for families was needing more knowledge about the risks and benefits of their decisions. The DCS scores varied (median = 25 (0–45)). Seven of the eight families were clear about their personal values and felt supported to choose; however, all eight families were either unsure or unclear about the risks and benefits and were unsure about their best choice. The PrepDM scale scores indicated a high level of preparation in seven of the eight families (median = 4.56 (4.38–5.00)). Qualitative feedback indicated a high level of satisfaction in all eight families. In this study, consultative decision coach services resulted in known SDM benefits of reduced decisional conflict and increased satisfaction and knowledge.
Families of children with various health conditions struggle to make a range of medical treatment decisions. Often these decisions are made in a more traditional medical model in which health-care providers guide the decision-making, and in many cases, patients and parents may feel that their role in the process is not enough. SDM aims to create an environment in which families and clinicians work in partnership to make decisions that are supported by the best available evidence and are aligned with the patient’s and the family’s values, preferences and treatment goals.
The use of a personal decision coach nurse has been shown to be highly beneficial in the hospital setting.
Importance of SDM in pediatrics
In a patient-centred care environment, when parents are making decisions on behalf of a child or when a young adult is involved in decision-making, SDM is particularly important. As decision scenarios increase in complexity, so, too, does the potential for increased decisional conflict and dissatisfaction, ending with patient and parent regrets. SDM specific to pediatric health settings and decisions is relatively novel, and little is published on the actual outcome assessment of decision coaching in child health-care settings. When SDM has been implemented in the pediatric setting, most models of care have used the direct care team or circle of care as the agent to deliver the SDM interventions (Boland et al., 2019). However, questions about the feasibility of these interventions and concern over perceived biases have been raised (Boland et al., 2019).
The use of a personal decision coach nurse has been shown to be highly beneficial in the hospital setting in adults (Stacey et al., 2012) and children (Boland et al., 2019). The experience gained through working in an SDM culture with a decision coach can empower patients and families to become engaged and inform medical decision-makers in the long term. Outcome measures of the family’s participation in the interventions demonstrate an objective metric that will support a more widespread use of SDM in pediatric settings.
There is still debate about whether the decision coach should be part of the team versus a separate, objective person. A 2012 systematic review in a pediatric tertiary care centre reported that the feasibility was poor (Stacey et al., 2012). In this study, decision coaching was completed by a member of the health management team, and creating time among other clinical demands was noted as a significant limitation. In some cases, families reported that a decision coach from within the existing health management team brought an element of bias to the process, suggesting that having a decision coach who is outside the circle of care could be advantageous (Gravel, Légaré, & Graham, 2006). Given these concerns, we implemented an impartial SDM decision coach outside the direct circle of care. The main objective of this evaluation was to determine if decision coaching outside the direct circle of care increases knowledge and satisfaction and reduces decisional conflict. Our reasoning was that these factors would all move in a positive direction as a result of the intervention.
A fully funded clinical program involving a decision coach based outside the direct circle of care was designed and implemented at a Canadian pediatric tertiary care centre. Using project management methodology, a pilot project was designed and built around the needs of the pediatric population. An advisory committee composed of internal stakeholders and external parent and youth advisors invested in pediatric SDM coaching services was formed to implement SDM in the hospital. A pediatric neurology needs assessment and gap analysis were conducted to understand where the key opportunities for transformation were, and a proposed future state for SDM was completed. The findings from the needs assessment demonstrated the need for an SDM program and consultation service with the following purposes: raising awareness of needs and potential interventions; defining and resolving decisional problems; reducing decisional conflict in families; increasing parents’ and patients’ knowledge level; impacting the level of satisfaction; and fulfilling the patients’ treatment plan. Identification of pediatric SDM leaders and comprehensive assessment methods were introduced early in the planning and implementation phase. As part of the pilot project, a position for a decision coach with the necessary skills and training was created and successfully implemented.
Outcome assessments collected as part of the SDM coaching services were analyzed. The coaching sessions took place from January to June 2019, with eight patients and families participating. The assessments focused on measuring the following:
- The decisional conflict was assessed using the SURE test (O’Connor & Légaré, 2010) before and after the SDM coaching intervention. The test was administered by the decision coach at the time of introduction of the referral by phone and following consultation in combination with the Ottawa Family Decision Guide at the end of the consultation. The SURE test has four questions, and the scores range from 0 (extremely high decisional conflict) to 4 (no decisional conflict).
- The 10-point Decisional Conflict Scale (DCS) (Graham & O’Connor, 2005) was sent to the family (by mail or email) prior to consultation and returned by the family at the time of consultation. There are 10 questions, and scores range from 0 (no decisional conflict) to 100 (extremely high decisional conflict).
- The PrepDM scale (Graham & O’Connor, 2005) was given to the family at the end of the decisional consultation and returned 10 days post-consultation. This 10-point scale assesses how well patients and families feel prepared to make a decision. Scores range from 0 to 100 (higher scores indicate a higher perceived level of preparation).
- The Satisfaction with the Decision Coach (Parent) tool (Feenstra, 2012) was given to each family at the end of the consultation and returned 10 days post-consultation. This 10-question tool rates patient and family satisfaction with decision coaching. No values or scores were assigned. Descriptive statistics for these standardized outcome measures are presented in Table 1.
All eight families participating in the coaching interventions provided feedback in the analysis of the outcomes. The medical decisional conflicts identified by the families included gastrostomy tube placement, medication changes, hemispherotomy, chemotherapy, care planning, spinal atrophy surgery and spinal fusion. Standardized outcome measures included the PrepDM two decisional conflict scales: the pre/post SURE test and the DCS. The Satisfaction with the Decision Coach (Parent) tool was used to collect qualitative and quantitative feedback.
The SURE test scores increased by 1.5 points post-consultation (pre-SURE: median = 2.50 (2.00–4.00); post-SURE: median = 4 (3–4), p = .08). The primary issue for families was focused on needing more knowledge about the risks and benefits.
The DCS scores varied (median = 25 (0–45)). Seven of the eight families were clear about their personal values and felt supported to make a choice; however, all eight families were either unsure or unclear about the risks and benefits and were unsure about the best choice for them. The scores on the PrepDM scale indicated a high level of preparation in seven of the eight families (median = 4.56 (4.38–5.00)).
The results of the SDM standardized outcome measures are summarized in Table 1.
Table 1. Shared decision-making standardized outcome measure results
This table shows the median pre/post coaching intervention scores on three standardized measures.
|SURE test (O’Connor & Légaré, 2010)
||Median = 2.50 (2.00–4.00)
||Median = 4.00 (3.00–4.00)
||SURE scores increased from pre- to post-intervention, but the increase was not significant (p = .083). The primary issue for the 8 families was mainly focused on needing more knowledge about the risks and benefits.
|10-point Decisional Conflict Scale (Graham & O’Connor, 2005)
||Median = 25, (0–45)
||87.5% (7/8) of the families were clear about their personal values and felt supported to make a choice. 100% (8/8) of the families were either unsure or unclear about the risks and benefits and unsure about the best choice for them.
|Preparation for Decision Making scale (Graham & O’Connor, 2005)
||Median = 4.56 (4.38–5.00)
||PrepDM scale levels indicated a high level of preparation in 87.5% (7/8) of the families. One family had received conflicting information from 2 surgeons and was unable to make a final decision.
The qualitative feedback from the Satisfaction with the Decision Coach (Parent) tool indicated a high level of satisfaction in all eight families. These results are summarized in the following figures. [PDF, 246.6 KB]
In addition to these standardized outcome measures, family testimonials were collected as part of the Satisfaction with the Decision Coach (Parent) tool. Comments about the process were generally positive and included the following:
“The decision coach was so helpful in clarifying our options and in creating a plan for our appointment with the neurologist. I also appreciated the fact that she was completely unbiased, to both my opinions/options and the doctors’. She was completely neutral and so didn’t pressure us one way or the other.”
“We found it helpful to have some devoted time away from home to have a formalized discussion about our goals, concerns, etc., with someone who could understand the weight of our decision and why we were struggling so much with it.”
“This discussion was so good; I really liked it. When the doctor recommended surgery for our son, we really did not know much about what it meant. After having received this information (decision aids) with the pictures describing the surgery, its benefits and risks, we have a much better understanding of what this type of surgery means for our son. Thank you.”
“Was helpful to speak to someone else and not just your partner. One feels pressure when speaking to the physician.”
“While we haven’t made any final decision, we felt as though the decision coach sessions were helpful in helping us look at the bigger picture and have some objective input from someone else looking in.”
Discussion and conclusions around shared decision-making (SDM)
Decision coach services in a pediatric setting provided in a consultative fashion, outside the circle of care, resulted in known SDM benefits of reduced decisional conflict and increased decision satisfaction and knowledge. These results confirmed the benefits of decision coaching. Investing in the creation of an SDM environment offering decision coaching support services to patients and families demonstrates a commitment to creating as positive a patient- and family-centred experience as possible. Access to a decision coach and SDM resources supports families in gaining treatment option knowledge and evaluating the benefits, drawbacks and clarifying priorities, all of which are integral to a positive patient experience. This project provides children, youth and parents with support across a range of challenging decisions at critical times in their health-care journey.
Since the implementation of SDM coaching services, this model has impacted many families and a number of pediatric clinical practices by facilitating decision-making. Decision coaching services are delivered to patients via an impartial decision coach nurse outside the direct circle of care. This is to overcome the obstacles of perceived bias and low feasibility when having SDM coaching completed by the treatment team.
As we work to see SDM coaching used more broadly, our goals are the following:
- Improve the education and engagement of health-care providers
- Assist in identifying decisions viewed as challenging for patients, families and health-care providers in areas of pediatric specialties
- Provide access to a decision coach and SDM resources in gaining treatment and knowledge, evaluating benefits and drawbacks, and clarifying priorities, all of which are integral to a positive experience
- Improve experience by providing greater support to patients and their families navigating treatment and care decisions, which is of particular importance to those facing a lifetime of challenging decisions
- Demonstrate the need to preserve, maintain, integrate and sustain this service within the organization’s operations
With the impact of COVID-19, the move to offer virtually remote services with online video conferencing has attracted wider areas of engagement and new areas of expansion that have allowed us to build bridges for new partnerships.
SDM coaching is an innovative and novel program that delivers an important clinical service. It reflects best practice, is patient-centred — and it respects everyone’s decision.
Acknowledgements: The authors would like to thank Adrienne Fulford, NP, Andrea Andrade, MD, Erika Clements, CLS, Rhonda Teichrob, SW, and Sherry Coulson, MA, for their assistance in proofreading and editing and supportive contributions.
* All median scores are based on an interquartile range.
Boland, L., Lawson, M. L., Graham, I. D., Légaré, F., Dorrance, K., Shephard, A., & Stacey, D. (2019). Post-training shared decision making barriers and facilitators for pediatric healthcare providers: A mixed-methods study. Academic Pediatrics, 19(1), 118-129. doi:10.1016/j.acap.2018.05.010
Feenstra, B. G. (2012). Evaluating Interventions to Support Child-Parent Involvement in Health Decisions [Thesis]. University of Ottawa. Retrieved from https://ruor.uottawa.ca
Graham, I. D., & O’Connor, A. M. (2005). Preparation for Decision Making scale. Retrieved from http://decisionaid.ohri.ca/eval.html#PrepDM.
Gravel, K., Légaré, F., & Graham, I. D. (2006). Barriers and facilitators to implementing shared decision-making in clinical practice: A systematic review of health professionals’ perceptions. Implementation Science 1(1), 16. doi:10.1186/1748-5908-1-16
O’Connor, A. M., & Légaré, F. (2010). The SURE test version for clinical practice: 4 items 2 response categories. In A. M. O’Connor, User manual – Decisional Conflict Scale (pp. 12-14). Retrieved from https://decisionaid.ohri.ca/
Stacey, D., Kryworuchko, J., Bennett, C., Murray, M. A., Mullan, S., & Légaré, F. (2012). Decision coaching to prepare patients for making health decisions: A systematic review of decision coaching in trials of patient decision aids. Medical Decision Making, 32(3), E22-E33. doi:10.1177/0272989X12443311
Bonnie Wooten, RN, MPA, is a project consultant and shared decision-making coach at Children’s Hospital, London Health Science Centre.
Craig Campbell, MD, M.Sc., FRCPC, is head of pediatric neurology, chair (interim) and chair (research) of paediatrics, and the physician lead for shared decision-making, Children’s Hospital, London Health Science Centre. He is also a professor at Western University.