Intestinal failure: Transitions during childhood (birth to 11 years of age)

As your child gets older, they will begin taking more responsibility for their own health care in preparation for eventually 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 various areas of development from birth to 11 years of age and gain independence in managing their own health care.

Birth to 3 years of age

General

• Be part of your child’s health-care team.
• Take breaks to renew your energy.
• Track and keep up to date with immunizations.
• Talk to your child about upcoming clinic visits. Bring a favourite toy for comfort.
• Be honest when explaining a procedure, even if it might hurt. Explore things that would provide comfort and develop coping strategies.

Developmental/physical

• Provide your child with opportunities to develop their gross and fine motor skills through unstructured play at home and outside.
• Encourage your child to play with others. This will help develop cognitive and motor skills.
• Encourage imaginary and pretend play.
• Introduce games that help the development of motor and language skills, such as building, drawing, puzzles or picture books.
• Join community activities such as play groups and parenting classes.

Social/emotional

• Try to encourage regular socialization with same-age peers through structured community programs, playdates or visits to the park.
• Helping your child recognize and identify their emotions is the first step in helping them manage their emotions.
• Set limits for your child to encourage appropriate behaviour.
• If you have concerns about your child’s ability to play or interact with other children, please speak to your child’s primary care provider or a member of your health-care team.

Self-care

• Teach your child everyday skills, such as brushing their teeth and handwashing.
• Follow a daily routine with your child.
• Find out about toilet training and needs specific to your child.
• Speak with a dietitian and/or occupational therapist about your child's specific feeding needs.

Education

• Stimulate your child's development by introducing a variety of age-appropriate activities such as singing and reading.
• Check out free local educational programs run by community or city agencies.
• Encourage language development through naming items in their environment and engaging in conversation.
• Introduce fun crafts and games, such as painting or matching picture cards.

Starting daycare and school

9–12 months before start date

• Determine the daycare or school in your area that can meet your child’s care needs.
• Have early conversations with the daycare and school (i.e., principal) to review your child’s medical conditions and medical needs.
• Depending on the location, access to health-care professionals in daycares and schools vary. Engaging with your child’s daycare or school early can help ensure access.
• Discuss the transition to daycare or school with your health-care team.

6 months before start date

• Determine any medical care needs your child will have while at school (e.g., disconnecting parenteral nutrition (PN) and heparinizing the line).
• Discuss involvement of home care nursing and who is required to submit referrals (this varies by province).
• Arrange for teaching and education with school personnel to ensure a smooth transition.
• Provide resources to school, including a school readiness package.

1–3 months before start date

• Obtain emergency supplies to send to school with your child.
• Make sure the school has an emergency procedures plan and up-to-date contact information.

Medical

• Encourage your child to interact with hospital staff.
• Learn and keep a record of your child's medical history, including medicines, procedures and special, nutritional needs.
• Medications will be part of your and your child’s daily routine. It can be helpful to use a medication schedule or app to manage medications.
• Plan ahead for travel. Check with your health-care team if there are any concerns regarding travels. Have enough medicine/formula for travel and take the most recent discharge summary or clinic letter with you.
• Find out about getting medical insurance or other funding. Speak to your social worker or Patient Resource Navigator, if available, for specific concerns.

4 to 7 years of age

General

• Don't let your child's medical condition get in the way of life! Expect and encourage normal childhood experiences.
• Teach your child that their behaviour and choices have consequences and be consistent. This will help your child feel more secure.
• Limit the amount of time your child watches TV, plays video games or is on the computer.
• Continue to be honest in explaining procedures and implement coping and comfort strategies.

Developmental/physical

• Begin to provide opportunities for your child to participate in organized physical activity and sports.
• Continue to provide opportunities for unstructured physical activity like going to the playground.
• Recognize your child's increasing need for independence and encourage it.
• Give your child household chores to help develop responsibility, such as helping with tidying up, setting the table or preparing simple snacks.
• Encourage your child to try activities that foster gross motor development, such as learning to ride a bike or scooter, playing in the park and going for nature walks.
• Encourage activities that help with fine motor development and coordination, such as Lego, drawing and crafts.
• Share any information with your child’s physical education teacher that they should know to help maximize your child’s participation.

If you have concerns about your child's development, speak to your health-care team.

Social/emotional

• Introduce your child to a variety of activities, such as going to the library, playing sports or music.
• Recognize your child's increasing need to interact with children their age and encourage it.
• Help your child learn to deal with difficult emotions by helping them understand why they feel a certain way and what triggers it.
• Continue to promote appropriate behaviour through positive discipline and reinforcement.
• Celebrate your child's achievements.

Self-care

• Get your child involved in planning healthy meals and cooking.
• Teach your child personal information, such as their home address and phone number and how to call 911.
• Praise your child for taking medication. Call it medicine, not candy. It is important that children know the difference between medication and candy in order to prevent accidental poisonings.
  

Education

• Try to set up a regular time for reading (e.g., bedtime stories).
• Label items at home to help with sight-word recognition.
• Encourage outdoor and indoor counting and reading games, such as hopscotch, dominos and cards.
• When registering your child for school, speak with the teachers about your child's health-care needs. Your health-care team can provide further medical details, if needed.
• If your child has a hard time adjusting to school or completing schoolwork, talk to your school and health-care team for further guidance.

Medical

• Teach your child about their medical condition and how to work any special needs into daily life.
• Prepare your child for clinic appointments and procedures using play-acting or drawing. This can include letting your child play out hospital experiences with puppets or dolls.
• If your child feels stress or anxiety about hospital visits, speak to a child life specialist.

8 to 11 years of age

General

• Teach your child how to express wants and needs.
• Recognize your child's increasing need for independence and responsibility at home.
• Talk to your child about the negative effects of smoking, drugs, alcohol and inactivity.
• Help your child manage stress through art, exercise, music and journal writing.
• Teach your child the importance of internet safety, including keeping personal information private. Supervise your child when they are using the internet.

Developmental/physical

• Continue to encourage your child to participate in both unstructured and organized physical activity and sports to help your child refine their motor skills.
• Encourage daily physical activity, such as walking, bike riding and playing in the park.
• Share any information with your child’s physical education teacher that they should know to help maximize your child’s participation.
• If you have concerns about your child’s development or physical activity, speak to your health-care team.

Social/emotional

• Introduce your child to a variety of activities, such as going to the library, playing sports or music.
• Recognize your child's increasing need to interact with children their age and encourage it.
• Help your child learn to deal with difficult emotions by helping them understand why they feel a certain way and what triggers it.
• Continue to promote appropriate behaviour through positive discipline and reinforcement.
• Celebrate your child's achievements.

Self-care

• Promote healthy eating, meal planning and preparation.
• Teach your child about the symptoms of their illness (i.e., fever, diarrhea) and when to get medical care.
• Talk to your child about puberty and expected body changes. Encourage questions.
• Start to encourage appropriate life skills, such as organizational skills and how to manage their own care.

Education

• Keep track of your child’s progress in school. If your child is struggling to meet grade-level expectations, get help.
• Speak to your child’s school about any additional supports (i.e., medical, learning, emotional) your child may need.
• Encourage your child to set aside time for “homework” after school. They should find a quiet space, free from clutter, and start working independently.
• Encourage your child's interests and involvement in planning activities, such as preparing a shopping list or meals.
• Maintain regular communication with your child’s teacher to make sure they are on track with their academic skills.
• Ask your child’s school for help if your child is struggling. They may be able to provide extra help or assign a peer mentor.
• Talk about the future. Ask your child about what they want to be when they grow up.

Medical

• Teach your child the names and dosing schedule of their medicines.
• Help your child understand more about their medical condition and its effects. Your health-care team can help answer any questions or concerns your child has.
• Prepare for clinic appointments by making a list of questions and concerns.
• Let your child speak directly with the health-care team. Encourage your child to ask questions and be involved during clinic appointments.
• Encourage your child to visit kid-friendly websites such as kids.aboutkidshealth.ca.
• 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.