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)
Our Advocacy Partners
- ACT - Autism Community Training
The mission of ACT - Autism Community Training Society is to provide excellent information and training, in accordance with international best practices. Their goal is to enable parents, professionals and para-professionals to support children and adults with Autism Spectrum Disorder to live productive, satisfying lives within their families and communities.
- Idic 15 Canada
Idic 15 Canada is a not for profit organization which provides resources, collaboration, advocacy and research to families living with Chromosome 15q11-13 Duplication Syndrome. This organization is born from the need to advance medical resources, family resources and awareness in Canada. They uphold this through:
1. Providing information and emotional support to individuals with Idic15, their families, and the professionals who work with them;
2. Developing resources and increasing global awareness and understanding of IDIC15q to help build medical collaborations globally;
3. Encouraging, supporting, and raising funds for global research into a wide range of issues related to Idic15.
- Rare Disease Foundation
With the vision of transforming the world of rare disease care, the Rare Disease Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research and care. As part of their Research Focused Initiative, the foundation has developed a Microgrant Program that kick starts research on patient focused projects for rare, under-studied diseases. As a compliment to research activities, the organization developed Parent Support Initiatives to foster the organization and empowerment of the rare disease community. The Parent2Parent Resource Network is a group of local forums for cross-disease information sharing and social support. The group provides a means of organizing families for mutual support, mentoring, and knowledge sharing regardless of their diagnosis. The community can then undertake educational outreach and advocacy issues relevant to a wide spectrum of rare diseases.
- Down Syndrome Research Foundation
The mission of the Down Syndrome Research Foundation is to empower individuals with Down Syndrome to reach their full potential throughout life by pioneering and providing educational programs and services, grounded in foundational research. Working with researchers, professionals and families, they are a bridge between research and practice to develop effective person-centred programs. Their programs are continually evolving as they gain new understanding through their ongoing research. They offer a wide variety of educational opportunities to children and young adults with Down Syndrome, including ground-breaking reading and communications programs, speech therapy, music in motion, summer school and transitions programs which prepare our students to live full and fulfilling lives.
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?