Reflecting on 50 years of evolution in Patient & Family Centred Care - #CAPHC50

If my memory is correct, “patient engagement,” and “patient-centred care” were hardly buzzwords in the 1990s. In fact, they were scarcely, if ever, uttered at all.

What was very much in the air, at least in children’s hospitals, was “family-centred care.” At first, it was closely associated with family members no longer being required to leave their child’s bedside at the end of visiting hours. “Families are not visitors” became a kind of mantra. Before long families gained recognition as members of their child’s care team who would inform treatment decisions and at times help make them.

Guiding and often prompting the new, more family-centred practices were Family Advisory Councils that had begun to form in the late 1980s. They consisted almost entirely of parents of children who were “heavy users” of the hospital and the health system. The councils had very similar goals and faced many common challenges (recruiting members, deciding on priorities, sustaining momentum, contending with tokenism, etc.), but they functioned in almost total isolation from one another. 

At the meeting of the Canadian Association of Paediatric Hospitals (CAPH) in 2000, the Executive Director of CAPH, Mary Babyn-Baena, saw the value in bringing parents from different councils together and invited me to make the contacts, chair the meeting, and get something started.

The gathering of eight volunteer parents from five councils (at CHEO, Montreal Children’s, BC Children’s, Alberta Children’s, and SickKids) was a great success! We immediately found deep common ground and enthusiastically began sharing lots of tips, some frustrations, and many ideas for future collaboration. And having sat across from one another and shared laughs as well as experiences, we found it easier to maintain contact through email—though I don’t think any of us owned a laptop!

When CAPH morphed into CAPHC in 2001, Elaine Orrbine (CAPHC’s CEO) reached out to our (still un-named) group of parents and helped make a much larger gathering of parents possible at CAPHC’s first conference in Toronto. In the opening session she declared family-centred care one of a handful of “hot-button issues” for the whole child-health community. Implicit in this was a recognition that family-centred care was much more than a nice thing to have. It was essential, even if sometimes difficult to achieve and sustain. During the conference nearly fifty people—not just parents, but hospital staff interested in putting family-centred care into practice—shared strategies, elected a steering committee, and chose a name: The Canadian Family Advisory Network (CFAN).

In the sixteen years since, CFAN has grown to include not only more councils but many individuals (parents, clinicians, administrators, and researchers) from across Canada. As the network has grown and its membership become more diverse, the task of holding it together has become more complicated. But it has survived—not a small accomplishment—and sometimes thrived in large part because of the unrelenting support from CAPHC but also because it has responded to changes and opportunities in the world of child and youth health:

  • A Greater Focus on Child-and Youth-Centred Care: Children’s councils and youth councils are now well-established at many centres, and some family councils have “graduates” of youth councils among their members. 
     
  • More Inclusive Councils: All councils have worked to increase the diversity of their memberships so that the families on the councils better reflect the families in the clinic waiting areas. Some, for instance, have particularly sought more Indigenous families or more families whose children have mental health conditions. Some councils and health centres have also developed their own larger family networks to facilitate the participation of families who can’t regularly attend meetings in person.
     
  • More Focus on Partnerships: Many councils now consist of a roughly equal number of family and staff members, in part to embed and model the kind of partnerships that are at the heart of family-centred care and that ensure ongoing two-way engagement.
     
  • New Roles for Families: Since 2005 CFAN has promoted and facilitated the creation of staff roles for parents in a number of health centres. These roles can be transformative but require careful planning and adaptation.
     
  • New Opportunities in Research: Increasingly patients and families are participating in research not only as subjects (being examined and questioned and providing blood and tissue samples, etc.) but as partners (helping to decide what questions most need to be answered and what outcomes are most important to measure, etc.). CFAN is being asked more and more to support such research, and CFAN members are helping to lead many such research projects.

In the midst of all these changes, the CFAN-CAPHC relationship has consistently deepened. CFAN members have been involved in CAPHC’s projects to improve patient safety, the care of medically complex children and youth, and the often fraught transitions from paediatric to adult care. CFAN members have participated in all aspects of the CAPHC conferences: as speakers, planners, panel members, poster-presenters, poster-judges, and as very active attendees. No one attending the conferences could fail to see—and hear—that families are an important part of the larger CAPHC community, and very much at its heart. The recent first-time inclusion of a CFAN co-chair, Scott Wilson, on the CAPHC Board is both a reflection of that reality and a means of strengthening the bond.

Now, of course, we hear a lot about the engagement of patients and families in healthcare. As this account suggests, such engagement began in paediatric settings in Canada long before it was so named, and it has developed in ways it would have been impossible to envision when "family visiting hours" were at the top of the agenda.

 

Frank Gavin,
National Liaison, CFAN