5 Things You Need to Know to Build Effective Models of Child, Youth and Family Engagement

Julia Hanigsberg headshotGuest blog from Julia Hanigsberg, President and CEO of Holland Bloorview Kids Rehabilitation Hospital

Three very different hospitals. Three very different programs. Nonetheless, The Change Foundation’s recent case study of family integrated care in the Mount Sinai Hospital’s Neonatal Intensive Care Unit (NICU) (Toronto), Holland Bloorview Kids Rehabilitation Hospital (Toronto), and the Children’s Hospital of Eastern Ontario (CHEO) (Ottawa), shows 5 key learnings that can underpin any healthcare people engagement initiative.

1. Imitation is the sincerest form of flattery: start with what has worked elsewhere

Mount Sinai built the pilot for its family integrated care (FICare) model in their NICU on Estonia’s “humane care” to make parents/guardians an integral part of a baby’s care team. It was a natural fit as they had an active parent advisory group and had a history of working closely with families. They applied the model in a rigorously designed pilot project and then followed up with an international randomized controlled trial.

Holland Bloorview based its model on the core concepts of dignity and respect, information sharing, participation and collaboration promoted by the Institute of Patient and Family Centered Care.

CHEO relied on a lean methodology approach to co-design a renewal of its framework for child, youth and family engagement in order to better reflect the demographics of the community it serves.

2. It doesn’t happen without the right leadership

Leadership is mission critical and the ideal leadership depends on the organizational culture, strengths, and when and where obstacles will be encountered. So at Mount Sinai this was the pediatrician-in-chief and director of the Maternal-Infant Care Research Centre. At Holland Bloorview, the then president and CEO personally championed a refreshed client- and family-centred care strategy and change-management framework to integrate best practices and evidence. While, at CHEO, what proved successful was partnership between the manager of patient experience and the team leader for quality improvement with the chief of staff as the executive sponsor thereby building support from physicians and clinicians.

3. Iterate, iterate, iterate: learn from mistakes, course-correct, persevere

Each program encountered challenges along the way and found unique solutions. For example, at CHEO, recruitment of youth and especially those from vulnerable populations for Family and Youth Forums proved challenging. They found success by looking outside the hospital to build relationships and trust in the community and by creating different ways to participate. Rather than a standing monthly engagement meeting, some people preferred to attend a one-time workshop on a specific issue, or participate in an online forum.

Mount Sinai didn’t anticipate that nurses would be worried about job losses and later they had concerns about the shift from “doer” to “teacher”.  Enlisting the support of champions within the nursing team and among parents to educate was a key lesson learned.

At Holland Bloorview there were bumps in the road too. At first, family leaders participating on committees had experiences of feeling left out or singled out or simply not being given the information they needed to participate effectively. Change management for staff included a formal process to apply for family leaders as committee members and giving staff the tools, they needed to effectively engage family leaders in the work of the hospital.

4. Start with strong foundations and invest in ongoing scaffolding

CHEO is building child, youth and family engagement into the project approval process and recognizes the need for continued support of the engagement framework. At Mount Sinai, parent education, nurse education, environmental support and psycho-social support (i.e. peer-to-peer support) are the pillars to aid continued partnership. And, at Holland Bloorview, the Client and Family Integrated Care team are the subject matter experts who focus on embedding child, youth and family leadership in all aspects of the hospital’s work. Family mentors work with new family leaders and “family as faculty” bring their experience to individuals and groups of providers.

5. This is culture change: seek out successes to celebrate

The high profile that Mount Sinai’s NICU received by demonstrating FICare’s positive impact on health outcomes and parent-child bonding generates pride amongst staff, which in turn increases their support and commitment to FICare. At Holland Bloorview one on-going form of celebration is the Spotlight recognition program that enables families to recognize staff for demonstrating client and family-centred care. Staff take pride in receiving a Spotlight and the recognition builds and reinforces client and family-centred behaviour. The best recognition can be witnessing the success first hand. CHEO is measuring and evaluating and points at an example to a plan that emerged from a series of facilitated meetings held by the Youth Representation Council: “We give our opinion, and combined with the opinions of the children and the parents, it turns into a beautiful well-designed structure.”

As parts of the healthcare system we all strive to innovate – to exercise creativity aligned to our mission and vision in order to bring value to the communities we serve and to our organization. Innovation will only thrive with an effective balance of the ideal leadership and local passion and cultural change. The Change Foundation’s case studies on successes in engagement give healthcare organizations concrete examples to follow and demonstrate the value of learning from the experiences of others and customizing to the local context.

Download the Achieving True Partnership case study report.

Achieving True Partnership: Three case studies of patient- and family-centred pediatric care in Ontario report cover

WHAT’S BEING SAID

How do we define ‘family caregiver’? By “family caregivers” we mean family, friends and neighbours who provide the vast majority of care, support and enrichment to those who have health related needs. Learn more about us and our work: bit.ly/2H7ZGgw pic.twitter.com/p3yLT8z7c9