By Nurya Kim
In a world where advocating for oneself is a crucial skill, teaching children, especially those with chronic illnesses, to speak up for their needs is paramount. From navigating healthcare appointments to interacting with teachers and peers, self-advocacy empowers children to express their concerns, preferences, and limitations effectively. By equipping them with the tools and confidence to advocate for themselves, we can help them lead healthier, happier lives.
Understanding Self-Advocacy
Self-advocacy is the ability to articulate one's needs, rights, and desires. For children with chronic illnesses, this can include communicating symptoms, medication requirements, and any accommodations necessary to manage their condition effectively. A child that understands the nature of their disease, the accommodations around their disease, and how their treatment plan works to help them is going to feel much more confident and even reassured, since they are not kept in the dark on the scary feelings around their illness [1].
Building Self-Advocacy Skills
1. To know is to conquer:
Encourage children to learn about their condition, including symptoms, triggers, and treatment options. Approaching children with chronic disease can be difficult, but knowledge can empower them to communicate effectively with healthcare professionals and make informed decisions about their care.
Using phrases like “you have something called [insert diagnosis]” could be a helpful start. Not only does this not overly emphasise the disease and its relation to the child, in other words it does not centre the child around the disease, but instead can familiarise the child with the diagnosis medical professionals and others in their life will often use [3].
Give a brief overview of the disease, the forms and variations, characteristics, and which forms the child has. Again, this serves as a way to familiarise your child with their own health condition [3].
2. Effective Communication:
Teach children how to express themselves clearly and confidently. Encourage them to use "I" statements to communicate their needs and feelings, and practise active listening to understand others' perspectives. Although self-advocacy is all about the child, it is important to have a system in place which allows the child to express their needs freely, so notifying teachers and other community members to facilitate open communication could be quite helpful as well [1,2]
Communication should start from the parent as well, make sure to answer questions honestly but delicately, perhaps involving the whole family [3].
3. Assertiveness Training:
Help children develop assertiveness skills to assert their needs while respecting others. Role-playing scenarios can be a helpful tool for practising assertive communication in different situations, such as requesting accommodations at school or asking questions during medical appointments [1].
4. Problem-Solving Skills:
Teach children how to identify challenges and brainstorm solutions. Encourage them to advocate for themselves by proposing alternative approaches or accommodations that could improve their situation.
5. Self-Reflection:
Encourage children to reflect on their experiences and identify areas where they may need additional support or accommodations. Regular self-assessment helps them recognize their strengths and areas for growth, fostering resilience and self-advocacy, but be sure to be gentle in this approach to ensure children see this as a learning opportunity and not a scolding.
It is important to make sure your child does not feel that the disease defines who they are. In advocating for themselves, the child should feel that while the disease makes certain things difficult they can still be good at other things or skills [3].
6. A private space and suitable environment
A private space where children feel they are safe to be vulnerable is important [4]. Furthermore, there should be no “egging on” or harsh words, and parents or guardians should allow the child to express the extent of their views and opinions on their disease.
Conclusion
Teaching children to advocate for themselves is a lifelong skill that empowers them to navigate life's challenges with confidence and resilience. By equipping children with self-advocacy skills, especially those with chronic illnesses, we can help them take control of their health, education, and social well-being. Through knowledge, effective communication, and assertiveness, children can become their own best advocates, leading to improved outcomes and a greater sense of empowerment.
Remember, advocacy starts at home. By fostering open communication, supporting their self-expression, and modeling assertive behavior, parents and caregivers play a vital role in empowering children to speak up for themselves and advocate for their needs. Together, we can ensure that every child has the tools and confidence to thrive in all aspects of life.
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