Advocating for children and adolescents in healthcare involves unique challenges and needs. Patient advocacy groups play a crucial role in ensuring these young patients receive proper care, support, and accommodations. Their physical, emotional, and developmental stages require advocacy strategies tailored to their age group. In this article, we will discuss the special considerations that patient advocacy groups must take into account when supporting children and adolescents, as well as highlight examples of successful Canadian groups focused on this demographic.
Special Considerations for Advocacy in Children and Adolescents
Developmental Sensitivity. Children and adolescents are at various stages of physical, cognitive, and emotional development. Advocacy groups must ensure that care plans account for these stages. For example, younger children may not fully understand their health condition, while adolescents might struggle with identity and independence. Age-appropriate communication, education, and emotional support are crucial.
Family-Centred Care. Unlike adults, children are dependent on their families for decision-making and care. Advocacy groups should adopt a family-centred approach, offering guidance and support to parents and caregivers while ensuring the child’s needs remain central. Providing educational resources, legal advice, and emotional support to parents can help families navigate healthcare systems more effectively.
School Accommodations. A significant aspect of advocacy for children and adolescents is ensuring educational support. This includes collaborating with schools to secure accommodations, individualized education plans (IEPs), and other adjustments to ensure a child’s learning environment meets their medical, emotional, and educational needs. Advocacy groups with young patients should be knowledgeable about education laws and policies in Canada so they can help families secure necessary services.
Mental Health Considerations. At any age, medical conditions can take a toll on mental health. Adolescents, in particular, often struggle with anxiety, depression, and/or social isolation as a result of their condition. Advocacy groups should prioritize mental health support, ensuring access to mental health professionals and creating peer support programs to help children and adolescents cope with their health concerns.
Transition to Adult Care. As adolescents approach adulthood, transitioning from pediatric to adult healthcare services is another area requiring careful advocacy. This transition is often complicated by gaps in services, differences in care models, and the young adult’s need for greater autonomy. Advocacy groups play an important role in helping both the patient and their family navigate this shift smoothly by facilitating communication between pediatric and adult care providers.
Successful Canadian Patient Advocacy Groups
Children’s Healthcare Canada advocates for children and youth’s healthcare needs, with a focus on influencing policy and driving innovation in pediatric care. They work closely with healthcare institutions to ensure that children’s healthcare systems are equitable, accessible, and high quality.
Cystic Fibrosis Canada provides resources to help families manage this life-threatening genetic disease and advocates for improved access to medications and treatments. The organization also engages in awareness and fundraising campaigns, and works with schools to ensure students with cystic fibrosis have the necessary accommodations.
Asthma Canada provides extensive support for young patients living with asthma. They offer educational resources to families, helping them understand how to manage asthma effectively and prevent attacks. Asthma Canada also offers resources for teachers to ensure that children with asthma receive appropriate accommodations and care during school hours. Additionally, they offer a peer support program for children between ages 7-11, called the Asthma Pals program.
Diabetes Canada is dedicated to supporting children and adolescents with diabetes. The organization offers comprehensive educational resources for families to ensure that young patients can manage their condition effectively. Diabetes Canada also runs summer camps across Canada that are designed to provide kids with diabetes an authentic summer camp experience with medical support and accommodations.
The Rick Hansen Foundation is committed to creating a more accessible and inclusive world, particularly for children and adolescents with disabilities. While their advocacy extends beyond healthcare, they play a crucial role in ensuring that young people with mobility challenges can access the resources, education, and physical spaces they need to thrive. The foundation also works on raising awareness and promoting policies that support accessibility in schools and other community environments.
Conclusion
Patient advocacy for children and adolescents requires an approach that is not only tailored to their unique developmental needs but also considers the broader family, school, and healthcare system. By providing support in navigating complex systems, facilitating school accommodations, and addressing mental health concerns, patient advocacy groups can greatly enhance the quality of life for young patients.
