Message of inclusiveness
“The message that resonates with me is about the interventions and resources needed to support siblings,” Linda Nguyen, a doctoral student in rehabilitation science and researcher with the CanChild Center for Childhood Disability Research at McMaster University in Hamilton, Ont., told this news organization.
Linda Nguyen
Ms. Nguyen, who wasn’t involved with this study, has researched the resources available to siblings in Canada and has found a lack of support options, particularly when it comes to specific health care management roles.
“Consistently throughout my research, I’ve seen the need for resources that go beyond a focus on siblings’ well-being and instead support them in their different roles,” she said. “Some want to be friends, mentors, supporters, and caregivers for their siblings in the future.”
Siblings often adopt different roles as they form their own identity, Ms. Nguyen noted, which becomes a larger part of the health care conversation as children with chronic conditions make the transition from pediatric to adult health care. Siblings want to be asked how they’d like to be involved, she said. Some would like to be involved with health care appointments, the chronic condition community, research, and policy making.
“At the societal level and public level, there’s also a message of inclusiveness and making sure that we’re welcoming youth with disabilities and chronic conditions,” Jan Willem Gorter, MD, PhD, a professor of pediatrics and scientist for CanChild at McMaster University, told this news organization.
Dr. Jan Willem Gorter
Dr. Gorter, who also was not involved with this study, noted that children with chronic conditions often feel left behind, which can influence the involvement of their siblings as well.
“There are a lot of places in the world where children with disabilities go to special schools, and they spend a lot of time in a different world, with different experiences than their siblings,” he said. “At the public health level, we want to advocate for an inclusive society and support the whole family, which benefits everybody.”
The study was funded by the Canadian Institutes of Health Research and the CHILD-BRIGHT Network summer studentship, which is supported by the Canadian Institute for Health Research Strategy for Patient-Oriented Research. Dr. Cohen, Ms. Nguyen, and Dr. Gorter have disclosed no relevant financial relationships.
A version of this article first appeared on Medscape.com.