Listening, engaging and working with patients and caregivers is fundamental to improving, redesigning and reimagining Ontario’s health-care system. However, it is well established that there is no single, right way to engage patients and their families, and that partnership between healthcare providers and patients and families can take many forms.
These studies of patient and family engagement approaches at Mount Sinai’s Neonatal Intensive Care Unit, Holland Bloorview Kids Rehabilitation Hospital and the Children’s Hospital of Eastern Ontario are profiles of carefully constructed efforts to increase the role of patients and families in shaping the care, values and operations in each institution.
We took similar approaches with each of the three subjects of these case studies, selecting the three sites after talking to key informants on who was doing interesting work in advancing patient- and family-centred pediatric care in Ontario. Then we held discussions with leaders at those organizations, looking for information to help us select sites with worthwhile stories, ideas and experiences to share.
When we had settled on a site, we asked our contacts in the organization to arrange for us to interview key respondents. We had developed an interview guide, broadly covering the evolution of patient- and family-centred care in the organization, its results and impact and lessons learned. However, questions were adapted to reflect the different situations of our three study sites. Completed case studies were sent back to those interviewed for their input.
The three examples in this study are too dissimilar to have produced a list of perfectly matched best practices. They have different mandates and clientele, and range from a single ward with 62 beds to a general pediatric hospital that serves a huge swath of the east end of the province. They all had long-standing, if somewhat ad hoc, traditions of engaging patients and families, but while Holland Bloorview and CHEO sought to bolster engagement throughout their operations, Mount Sinai’s NICU was focused more narrowly on making parents fully integrated members of their baby’s care team.
Nevertheless, our review found significant similarities among the hospitals. They are discussed individually in the full-length case studies.