Families are an integral part of the aerodigestive care team. As a parent or caregiver, you know your child best – your observations and involvement are crucial for accurate diagnosis and effective treatment. Aerodigestive programs emphasize family-centered care, meaning that your role is not just as a bystander but as an active participant in every step.
Providing Information: One of the most important things families do is share their child’s history and day-to-day experiences. Be prepared to tell the team about your child’s symptoms (for example, what triggers a breathing difficulty or what textures of food cause trouble), their feeding routine, sleep habits, and any previous tests or treatments. Keeping a symptom diary or bringing video clips (like a recording of a noisy breathing episode or cough) can be very helpful. Your detailed observations help the team piece together the puzzle of your child’s condition.
Participating in Decision-Making: When the aerodigestive team discusses treatment options, they will explain the pros and cons of each approach. As the caregiver, you have a say in these decisions. Feel free to ask questions – for instance, “What does this surgery involve?” or “Are there alternatives to this medication?” The team values your input regarding what therapies align with your family’s needs, cultural preferences, and the practical realities of caring for your child at home. Together, you and the medical professionals will make decisions that everyone is comfortable with.
Supporting Treatments at Home: Much of aerodigestive care continues at home. Families play a big role in implementing the treatment plan. This can include:
• Managing medications or feedings: giving medicines on schedule (like inhalers or acid reflux medication) or administering tube feedings and ensuring the tube is cared for properly if your child has one. The team will teach you how to do these tasks safely.
• Therapy exercises: If your child has swallowing exercises or oral motor exercises from the speech therapist, you’ll help them practice these regularly. Similarly, if there are breathing exercises or chest physiotherapy techniques recommended by the pulmonologist or respiratory therapist, parents often help their child do these at home daily.
• Diet and nutrition: Following any dietary guidelines from the nutritionist (such as thickening liquids, avoiding certain foods, or sticking to a caloric goal) is something families manage. You might also need to keep track of your child’s intake or output (for example, how much they eat or how often they vomit) to report back to the team.
Monitoring and Communicating: After treatments start, parents monitor their child’s progress. You will notice if symptoms are improving or if new issues arise. It’s important to communicate these updates to the aerodigestive team during follow-ups (or sooner if something urgent comes up). For example, if your child is still choking on liquids despite thickening them, or if a new cough has developed after starting a medication, letting the team know allows them to adjust the plan. Many programs encourage families to call the nurse coordinator with concerns between appointments.
Emotional and Advocacy Support: Families also provide the love, encouragement, and emotional support that children need during what can be a stressful time. Simple things like comforting your child during procedures, sticking to normal routines when possible, and celebrating small improvements go a long way. Additionally, you are your child’s best advocate. This means making sure their voice is heard (especially if they are too young to speak for themselves). If something isn’t working or you have concerns about any aspect of care, the team relies on you to bring that up. They want to partner with you to find solutions.
In summary, the family’s role is active and essential. Aerodigestive programs succeed best when families and providers work in partnership. Don’t hesitate to engage fully: ask questions, learn as much as you can about your child’s condition, and share your insights. The team is there to support you as much as your child, empowering you with knowledge and resources so together you can help your child thrive.
Next: Resources and Support