The following are some common answers to questions that you may have regarding coordination of care for your child and family.
You know your child the best and are an important part of their healthcare journey. You are invited to be an active partner in your child’s care.
Some ways to be involved in your child’s care can include:
- getting to know your child’s healthcare team and let them know how you want to participate in decision making.
- sharing with the team what is important to you and your child
- expressing your family’s values, needs, and preferences
- sharing your observations about your child
- asking questions to improve your understanding
- taking a First-Aid class can also be beneficial
Sometimes, the family becomes a “Care Coordinator.” Ideally, families have the option to ask their healthcare team and, or a healthcare team member to be their “Care Coordinator.” This could include being on top of appointments, medications, and navigating services.
You and your healthcare providers can advocate for your child and work together to connect you with the appropriate resources. All types of questions and suggestions are welcome in order to support your child and family.
Family members from the Alberta Children’s Hospital have provided a number of helpful tip sheets related to:
Every child’s healthcare team is different, depending on your child's needs. Factors such as where you live and receive care also impacts who might be on your local team. If your child is accessing eating, feeding and swallowing services, members of your healthcare team will often help to coordinate care together with your child’s Primary Care provider (eg: pediatrician, family doctor, or nurse practitioner) and other professionals in your community to improve care planning, communication, and your experience...
Check with your hospital team for information about next steps and transition of care from one team to another.
All types of questions are welcome in order to support your child and family. Anyone on your team will be able to direct your questions and information about what your child needs to the right provider. The following are a list of some common topics that you may have questions about and potential providers or services to consult:
Food preferences
- Physician, Dietitian, Occupational Therapist, Speech-Language Pathologist
Emergency health planning
- For enterally fed children: Talk to your Home Enteral Nutrition clinic. Some NICU or Inpatient units at the hospital can also be a connection.
Additional Resources:
https://www.feedingtubeawareness.org/troubleshooting/emergencies/preparedness/ - For orally fed children: Talk to you healthcare team to help you learn to recognize signs such as symptoms of aspiration, dehydration, nutrition challenges. They can also help you to develop an emergency plan.
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Note: Taking a First-Aid class is also beneficial
Changes in my child’s development
- Family physician or Pediatrician, Dietitian, Occupational Therapist, Speech-Language Pathologist, Physical Therapist, and often schools.
Changes in my child’s health
- HealthLink (Dial: 811), Family physician, Pediatrician, and other members of your healthcare team.
- Note: Go to the hospital in the event of an emergency.
Transitioning from a feeding tube to oral feeding
- Home Enteral Nutrition clinic, Dietitian, Occupational Therapist, Speech-Language Pathologist, Physician, Nurse
Social concerns
- Social Worker
- Mental Health provider
- Family Support for Children with Disabilities (FSCD)
Financial Assistance
- Social Worker or Early Intervention Worker.
- Additional Resources: Equipment and Supplies Funding Information
Transitioning from pediatric to adult care (18 years)
- Transition planning varies across the province and you may consult with Hospital Transition Team, Home Care, Social Worker, and, or Family & Community Support Services.
- Additional resources:
How do we prepare for transitioning from pediatric to adult care ?
This will vary depending on your child and their needs. You can ask and reach out to your healthcare team at any time should you have questions. It may help to write down your questions and the next steps that were agreed on for you and, or your care team to do.
Families can ask their healthcare team or a healthcare team member who their “Care Coordinator” is or can be. This Care Coordinator can help with setting up appointments, coordinating and navigating services, and setting up a medication list.
There are also a variety of helpful tools and templates that can help with communication and care coordination here: Tools and Templates
You and your family are key partners in setting goals together with your healthcare team. It is important to share with the team what is important to you and your child, and to express your family’s values, needs, and preferences. You can find more information on Goal Setting here. You can also ask your healthcare provider if they have considered using the following Collaborative Goal Setting tools , which can support your family in shared decision-making.
Healthcare providers are encouraged to work collaboratively and there is good evidence that outcomes are better when they do. It is okay to bring the differing information or recommendations to your team’s attention and ask them to confirm or connect.
Transitioning from pediatric to adult services involves planning and collaboration with your care team to ensure that you have the support you need. You can start consulting with your care team and preparing around age 12-14. For more information: https://www.albertahealthservices.ca/y2a/y2a.aspx
Additional Resources:
Alberta Health Services - Transition 101: https://www.albertahealthservices.ca/y2a/Page16379.aspx
