Our Understanding of Advocacy
Based on our experience and knowledge in paediatric care, we understand advocacy to be about empowering yourself or others and influencing people. It is about raising awareness, disseminating knowledge, connecting people, and finding new ways to share information in order to approach problems in healthcare.
As members of Children's Sleep Network, we believe that there is an incredible need for person-centered medicine, and that without this "holistic" focus on a child's disruptive sleep/wake behaviours, many paediatric patients and their families can feel disempowered. The Children's Sleep Network is advocating for increased attention to individual patient's needs that includes sleep problems, as well as collaboration with a diverse range of partners.
Sleep is essential for the healthy development of children. In the absence of known causal treatments for many Neurodevelopmental Disorders/Disabilities, clinical interventions largely rely on pharmacological rehabilitation, which include anti-depressants, antipsychotics, and psychostimulants. However, while these treatments may be partially beneficial, results are inconsistent for various reasons. Given the essential role of sleep in cerebral functioning, and the detrimental consequences of sleep problems, recognizing and treating sleep problems has enormous potential to improve life trajectories of children with Neurodevelopmental Disorders/Disabilities.
In other words: we see sleep as a new treatment paradigm.
For concrete examples of how The Children's Sleep Network is advocating for and with stakeholders, please browse through our past and current projects. Advocacy is integrally linked to research, knowledge dissemination, and clinical practice, and because of the high subjectivity of advocacy, we have hosted a free and open access conference, where caregivers, parent advocates, and community members have come together to share knowledge and develop strategies to improve sleep-related healthcare in the future. For more information, please see the Sleep2Treat Workshop
Below are our most recent advocacy discussions. Links with further information on these discussions will be updated soon:
Ms. Kirsten Graham (Parent Advocate) - June 12, 2013
Ms. Lori Eisenhaur (Co-founder, IDIC15) - July 12, 2013
Ms. Deborah Pugh (Executive Director, ACT - Autism Community Training) - TBA
*Advocacy discussions are graciously moderated by Dr. Lori d'Agincourt-Canning (Assistant Clinical Professor, University of British Columbia)
Share your experiences with us!
Advocacy is multifaceted, and we recognize that our understanding is subjective. That is why we would love to hear from you! Tell us your story; enter the discussion!
Here are some questions that may help guide you to share your story:
- What is your definition of advocacy and why?
- What is your experience with sleep problems in children?
- How are day and sleep behaviours posing a challenge to children, caregivers, and healthcare practitioners?
- What are your experiences with the medications prescribed to address sleep problems in children?
- What is your experience with the support systems in place to aid caregivers of children with Neurodevelopmental Disorders/Disabilities (Example: medical community or schools)
- Do you have any questions for us?