Category: Family Partners
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Learning from Families of Children with Complex Health Issues
A team of family leaders, clinicians and researchers is interested in learning from families of children, youth or young adults with complex health issues. The team wants to understand what day-to-day life is like for families, and things that the healthcare system can do to improve family well-being. If you are a caregiver of a…
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Disability and Discrimination: A Call to Action for Creating Positive Change, Together
A recent study by Dr. Stefanie Ames and colleagues sheds light on the problem of discrimination against children with complex medical needs by the medical community, emphasizing its significance for children, families, and clinicians. CYSHCNet enthusiastically applauds Dr. Ames’s efforts and appreciates the insightful commentary by Dr. Cook and colleagues, which effectively raises awareness of…
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What Does True Family Partnership in Research Look Like?
Nikki Montgomery shares her experience as program and communications manager of Family Voices AND as a parent of a medically-complex child. An expert in plain language and health literacy, Nikki is passionate about helping families and researchers come together to engage in work that matters. Tell us about the goals you have in the role…
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Family Partner Spotlight
Advice for Considering Culture from Elisa Aucancela Meet Elisa! She’s personally been a family partner on two CYSHCNet research projects and partners with us through El Grupo Vida. As executive director, Elisa oversees this network of Hispanic/Latino parents. The nonprofit was formed to provide mutual support for people with disabilities or special needs, including their…