Caring for infants and children with PI

Helping your child understand

Depending on your child’s age, there are different techniques to help them understand PI.

Infants and toddlers (ages 0-2)

They are too young to understand their disease, so caregivers should provide comfort and interaction during medical procedures and hospitalizations.

Preschool children (ages 3-4)

They may understand what it means to get sick, but not understand why and how. Caregivers should let them make some decisions, praise them for positive choices, and be firm and consistent with things they do not have a choice over.

School-age children (ages 5-12)

They may have a greater understanding of their disease but may illogically believe they caused it. Caregivers can help by addressing this concern and making sure they know PI isn’t their fault. Caregivers should let them participate in the management of their care and practice procedures on a doll or stuffed teddy bear to relieve anxiety.

Teens (age 13-17)

They want to be more independent, so caregivers should explain the importance of medication even when they feel better, include them in discussions with their medical team, and encourage them to express their emotions through play, art, or other activities. To help lessen frustration and anger over feeling left out, caregivers should also make sure their children can participate in school or other activities whenever possible. As your teenager matures, it's important to start conversations about dating. Dating is a hallmark of adolescence, and speaking to your son or daughter about how to talk about their PI and safety concerns is important. Although rejection is a normal part of dating, and people reject others for all sorts of reasons, reiterate that if someone rejects them because of PI, that person is not the right person for them.

Young adults (age 18-25)

They are ready to self-explore life with separation from their caregivers. They must make choices about education, career, lifestyle, peers, and romantic relationships on their own. You should keep the lines of communication open by being there to offer advice, but your young adult should be making positive choices by staying active and balancing responsibilities themselves. Your young adult still can pursue life goals such as attending college, finding a career, and living independently. They should become knowledgeable about their rights, and understand their strengths and limitations when choosing a career. Finding new providers and facilities is important in the transition if your young adult moves to a new area. Be sure to help them choose healthcare providers who best suit their needs and help them understand insurance implications.