Intestinal failure: Transitions during adolescence

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Find information to help support your teen (12 to 18 years of age) with intestinal failure transition through developmental ages and stages.

Key points

  • Help your teen find positive role models to talk to about how they feel about their condition and encourage them to consider becoming a mentor to younger children.
  • Encourage your teen to hang out with friends and join teams or clubs at school or get involved in activities outside of school.
  • Highlight the different higher education and career opportunities available to your child and any accommodations available for their condition.
  • Help prepare your teen to transition to the adult health-care system by encouraging them to start making their own medical appointments, meeting with their health-care team independently, asking questions during appointments and making decisions with their health-care team.

As your child gets older, they will begin taking more responsibility for their own health care in preparation for transitioning to the adult health-care system. Transition means moving from one life stage to another. It involves change and adapting to change, which can be exciting but sometimes scary. The best way to deal with any transition is to plan ahead and be prepared. Preparing for a transition involves learning, in advance, the skills that your child will need to succeed in a new life stage.

Below are some recommendations for helping your child navigate their way through the health-care system as a teenager and gain independence in managing their own health care.

12 to 15 years of age

General

Encourage your teen to:

  • Talk about their needs and how they feel about their medical condition with you and their health-care team.
  • Ask questions.
  • Find positive role models.

Developmental/physical

Encourage your teen to:

  • Continue to participate in both unstructured and organized physical activity and sports.
  • Engage in daily physical activity, such as walking or bike riding.
  • Let their physical education teacher know any information they might need to maximize your teen's participation.

Social/emotional

Encourage your teen to:

  • Join teams and clubs at school or get involved in activities outside of school, such as camps or community programs.
  • Hang out with friends.
  • Talk about gender identity and relationships with you, their friends or someone else they trust.
  • Think about who they would like to share their medical condition with.
  • Try to limit technology use and be aware of their presence on social media.
  • Be aware of their mental health and access support by connecting with their health-care team, guidance counselor or another trusted adult.

Self-care

Encourage your teen to:

  • Make and eat healthy meals.
  • Learn about their community and find resources related to their health-care needs.
  • Practice budgeting and banking skills.
  • Set up their own routines, such as taking medicines and telling you when they are running out.
  • Prepare for the unexpected. For example, carry medications and their MyHealth passport in case they need to be away from home for longer than expected or need to visit a hospital.

Education

Encourage your teen to:

  • Prepare for the transition to high school by attending open houses and visiting the school's website. They will also need to consider the different expectations for learning and studying.
  • Try to develop healthy study habits.
  • Learn how to explain their medical condition to teachers or other people in their life.
  • Ask their school for extra help if they are struggling.

Medical

Encourage your teen to:

  • Keep learning about their medical condition and know the reasons for tests and procedures.
  • Develop a three-sentence summary, which includes the following information:
    • Sentence 1: Age, diagnosis, and brief health history
    • Sentence 2: Their treatment plan thus far
    • Sentence 3: Questions or concerns to raise during the visit
  • Make sure they know about symptoms that would need immediate medical attention.
  • Start to make their own medical appointments and record of their medical history.
  • Attend part of their medical appointments by themselves. Prepare a list and ask questions.
  • Be aware of how to contact their health-care team.
  • Discuss getting ready to move to the adult health-care system before they turn 18 years old.
  • Talk about sexuality, birth control, drugs, alcohol and smoking with their health-care team.

16 years and up

General

Encourage your teen to:

  • Think of themselves as a role model and consider being a mentor to younger children.
  • Make arrangements to continue any special funding or drug plans as some programs may end when they turn 18. Teens should discuss their specific needs and which resources may be available with their social worker or health-care team.

Developmental/physical

Encourage your teen to:

  • Continue to participate in both unstructured and organized physical activity and sports.
  • Engage in daily physical activity, such as walking or bike riding.

Social/emotional

Encourage your teen to:

  • Participate in community programs they are interested in.
  • Join teams or committees at their school.
  • Be mindful of the impact pressures such as peer pressure, social events, social media, relationships, school and part-time jobs can have on their health. Encourage your teen to seek support if needed.
  • Identify and implement positive strategies to help them manage stress (e.g., exercise, sufficient sleep, proper nutrition, mindfulness, deep breathing).

Self-care

Encourage your teen to:

  • Keep an up-to-date record of tests, procedures and medications. Supportive people can help them stay on track.
  • If they will be moving away from home, find places to get their blood work done and prescriptions filled.
  • Make sure their health-care team has their most up-to-date emergency contact information.
  • Discuss the transition to adult care plans with their health-care team.

Education

Encourage your teen to:

  • Register with Student Services if going to college or university and be sure to discuss any learning needs and educational accommodations they may require.
  • Go for career counselling, shadow someone at their job or attend a job fair if they are looking for work.
  • Research their medical condition.
  • Contact others who have already transitioned to an adult care centre to learn about the adult system.

Medical

Encourage your teen to:

  • Make decisions together with their health-care team.
  • Discuss the effects of alcohol and drug use on their medical condition and health with their health-care team.
  • Know who to call in an emergency or for routine concerns.
  • Visit an adult care centre and prepare for transfer.
  • Update their summary of their medical records.
  • Use a calendar system to track appointment dates for blood work, clinic appointments and other tests.
  • Transfer to an adult care centre and celebrate their graduation from the child care system.

As your child grows, continue with the suggestions from earlier years and add new activities and responsibilities as appropriate. Consider your child’s unique developmental course and use this as a guideline.

Last updated: January 20th 2023