Start With Your Care Team
Building a strong care team
Your child’s rheumatology team is your primary partner. Learn how to prepare for appointments, ask the right questions and better understand your child’s care plan.
Finding a strong community of support and building healthy relationships with your child’s healthcare team are critical to successfully navigating life with childhood rheumatic disease.
Make the Journey Easier
A strong partnership can make the journey easier
A new diagnosis can bring a lot of information, decisions and uncertainty. You do not need to understand everything at once.
Your child’s rheumatology team is there to help you understand their condition, explore treatment options and make a plan that works for your child and family. The strongest care relationships are built through preparation, open communication and mutual respect.
You Know Your Child
Before the appointment
- Keep a running note of symptoms, changes and side effects
- Bring an up-to-date medication list and relevant notes or
photos - Choose your top two or three questions
During the appointment
- Begin with your most important questions or concerns
- Ask for unfamiliar terms to be explained in plain language
- Take notes and confirm that you understand the plan
After the appointment
- Write down medication changes, tests and next steps
- Add follow-up dates and reminders to your calendar.
- Continue tracking symptoms and how your child is
responding
Questions to Ask
Questions you may want to ask your care team.
Your care team wants you to understand your situation and plan and feel comfortable participating in decisions.
- What is the goal of your recommended treatment?
- What benefits and what are some possible side effects should we expect?
- How will we know if the treatment is working?
- When should we expect to notice a change?
- What should we do if symptoms worsen or something new appears?
- Are there tests, referrals or follow-up appointments we need?
- Who should we contact between appointments?
- Are there changes we should make at school, at home or during activities?
Strengthen the Partnership
Document what you see
Keep clear notes about symptoms, appointments, treatments and questions. A running note on your phone or a shared family document can make it easier to remember important details.
Speak up for your child
You know your child best. When something does not feel right, explain what you are seeing and ask for clarification. Advocating does not mean having all the answers—it means making sure your concerns are heard.
Share the whole picture
Tell your team how your child’s condition is affecting sleep, school, activities, friendships and family life. These details may not be visible during a clinic appointment, but they can be important when making care decisions.
Use the support around you
You do not have to start from scratch or navigate the journey alone. Connect with Cassie + Friends, other families and trusted support resources to learn from shared experiences and feel less isolated.
Vital Connections
Advice for developing a strong relationship with your child’s healthcare team.
The Vital Connections webinar brings together a parent, family educator, pediatric nurse and social worker to share practical advice for developing a collaborative relationship with your child’s healthcare team.
The session explores:
- Preparing for medical appointments
- Making difficult treatment decisions
- Asking questions and advocating effectively
- Communicating during stressful moments
- Accessing professional and community support
Support Beyond Medicine
Social workers can help with more than you may realize.
A social worker may be part of your child’s broader healthcare team. They can help identify your family’s practical and emotional needs while supporting the overall well-being of your child.
Their support may include:
- Medication coverage and financial concerns
- Emotional and family support
- School or home-related challenges
- Accessing community resources
- Coordinating care with the healthcare team
Ask at your next clinic visit whether social work support is available and how your family can access it.
Share the Entire Story
Building more connected care for families across Canada.
Much of your family’s experience with chronic illness happens beneath the surface. Your child’s care team may not automatically see the emotional, social and practical challenges affecting everyday life.
Share how your child’s condition and treatment are affecting school, activities, friendships, routines and family life. This fuller picture can help your healthcare team better understand your child’s needs and make more informed care decisions.
A Partner in Care
Your knowledge and experience are essential to the care plan.
You are an important member of your child’s healthcare team. Take an active role in treatment decisions, share your child’s needs and preferences, and continue asking questions until you understand the plan.
Communicate
with Care
Respect and openness help build stronger relationships.
Fear, frustration and uncertainty are natural when your child is living with a chronic condition. During difficult conversations, try to pause and be mindful of your tone, body language and word choices.
Healthcare providers are people, too. Kindness, openness and empathy can make it easier to work through challenges and maintain a productive partnership focused on your child’s care.