The Way Forward: Patients and Families as Members of the Research Team

During the early stages of my PhD research, I met 3 amazing parents of children who had died from life-threatening conditions. They took part in the first phases of my research, and then continued to provide advice as I ran into challenges. One of the ethics review boards insisted that the consent for a later stage of my research start with: “You are eligible for this research because you are the mother of a child who died.” I thought that sentence was a rather abrupt introduction but reached out for a second opinion from those parents. It was unanimous! We crafted new introductory sentences focused on the overall purpose of the research rather than eligibility. One of the parents wrote a letter explaining the negative emotional impact of being immediately faced with the sentence requested by the ethics board. We were allowed to divert from their protocol and start with the description of the study purpose. It was my first taste of the impact of having family members’ input on the research process rather than just having them take part in my research. Since then, I have endeavored to include family members in most of my research, but I am the first to admit that I have not always got it right. Getting feedback on specific aspects like consent forms is easy—but it does not take full advantage of all the wisdom families have to offer. Beyond the experience of being the family member of a child with a life-threatening illness, family members bring a range of personal and professional skills to the table. The challenge is in figuring out what those skills are and how to ensure meaningful involvement in the research team. Simply asking family members to join the research team meetings and jump in wherever they can is not a reasonable expectation. Inclusion of patients and family members as full members of the research team has been deemed critically important by several granting agencies.1,2 However, there may be particular challenges in enacting this goal in the area of palliative care—and pediatric palliative care more specifically. Through a recent systematic review, several barriers to involvement of patients and families in palliative care research were identified including the emotions and impact of involvement, a lack of training, role definitions, and power imbalance.3 Similar to concerns raised about asking patients and families to be research participants, researchers are concerned about overburdening patients and families, who may already be carrying a heavy load of caregiving or grieving, by asking them to join a research team. However, patients and families clearly indicate an interest in being involved in research, both as participants and as members of the research team.3 The critical piece is training for all team members—researchers, clinicians, patients, and family members—to ensure true collaboration, respectful interactions, the best possible experience for everyone, and a high-quality study that will ultimately lead to improvements in care. Fortunately, there are a growing number of opportunities for this type of training (eg, CanChild Family Involvement in Research Training Course,4 Patient-Oriented Research Curriculum in Child Health5), which may end the trial-and-error approach to involving families and make incorporation of family members as full members of the research team easier for researchers and families who are just starting down this path. Our research needs to be relevant to all stakeholders—especially patients and families. They guide us in asking the right questions and doing the research in a respectful way, and they can also help share our results. In palliative care, change has been slow. Despite research showing the benefits of early integration of palliative care, referrals in the last days or even hours of life are still relatively common. Efforts to disseminate research to health professionals have not resulted in significant widespread change. Patients and families are far more numerous than health professionals, thus providing tools and encouraging patients and families to demand change may help us move forward. I recently came across “The Waiting Room Revolution”—a podcast focused on helping the public understand what the research says about palliative care and why such research is important.6 Most episodes include a family member sharing his or her experience in obtaining or receiving palliative care and the challenges faced in navigating the health system. These stories demonstrate the link between research and practice and help share findings with a wider audience that can truly bring about change. I believe that involvement of patients and families as full members of research teams right from generation of ideas through sharing of results is critically important in advancing the field of palliative care. However, to be most effective, we must learn to do it well.

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