Grant: Planning and Dissemination Grant - Institute Community Support

Siblings of people with developmental disabilities have the longest lasting relationship with their brothers and sisters but have been quite ignored when it comes to health research, as well as patient engagement efforts. Indeed most of the research on families focuses on parents and resources designed for families are quite parent oriented. Non-disabled adult siblings have an important role to play as caregivers, particularly as their disabled sibling ages but they struggle in terms of navigating the health care system with their sibling, as well as maintaining their own physical and mental health. Through the Sibling Collaborative, established by siblings in 2018, we have been learning about the needs of Canadian adult siblings, offering peer led interventions for siblings, developing resources, and evaluating the impact of our efforts, in partnership with the Centre for Addiction and Mental Health. There is much to be done, to bring the sibling voice to health care research and clinical efforts and a great deal which can be learned from more established National sibling efforts from the UK and the US, as well as from listening to and working collaboratively with Canadian siblings. The purpose of this project is to bring Canadian siblings together, for the first time, to learn from one another and to develop priority areas of focus. In turn, siblings will share that information with a group of policy makers, health administrators, and researchers, in order to collectively establish a national research, policy and practice agenda. Building off of a two year successful partnership between researchers and adult siblings, we will work together to establish and begin to address sibling research priorities to better address their health, and the health and health care needs of their brothers and sisters.