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Mental health support for caregivers of children with PI

You don’t have to go it alone–we’ve compiled this resource of mental health tips.

Having a child with PI can be a stressful, scary, and traumatic journey for parents and caregivers. Just remember that you’re not alone.

These feelings are normal

  • Feeling fearful and uncertain.
  • Feeling hyper-vigilant about your baby’s health.
  • Feeling unable to relax or on edge.
  • Feeling exhausted and worn down.
  • Having difficulty focusing on other tasks.
  • Feeling a mix of different emotions that vary day by day or even moment to moment.
  • Feeling disconnected from family and friends.
  • Feeling tension with your significant other.

When to be concerned

There’s never a bad time to seek help if you need additional support. However, the following may indicate a need for more immediate or more intensive help:

  • Depressed mood, feeling down most of the time nearly every day.
  • Loss of interest in things you previously enjoyed.
  • Feeling irritable or restless most of the time.
  • Feeling hopeless or helpless.
  • Feelings of excessive guilt, loneliness, or isolation.
  • Difficulty sleeping or eating.
  • Inability to complete daily tasks of self-care.
  • Thoughts of harming yourself or somebody else.
  • Disagreement with your significant other.
  • Upsetting interactions with family or friends.

How to get help

  • Ask your care team for a referral to a pediatric psychologist or health psychologist. These specialists often have experience working with children and caregivers who are coping with traumatizing, prolonged, or life-threatening illnesses.
  • Consider individual therapy, marriage counseling, and whole family therapy if you have children old enough to participate.
  • If you are specifically experiencing symptoms of traumatic stress, including nightmares or unwanted memories, avoidance, heightened reactions, anxiety, or depressed mood, you may want to seek out a therapist with experience in treating individuals with post-traumatic stress disorder (PTSD).
  • If your child has older siblings who are struggling, ask your team if there are child therapists available to help answer questions and provide support.
  • Call your insurance company and ask for covered mental health providers in your area. Ask what benefits are offered and what services are covered or not covered. Be aware that in some situations, billing may be done through your child’s insurance and medical diagnosis. Many employers have an employee assistance program (EAP) that offers mental health resources, as well. 
  • Speak with your primary medical doctor (PMD) about therapy referrals. If appropriate, you may also choose to ask your PMD about medications to help with mood or anxiety. They may refer you to a psychiatrist, a physician who specializes in the medical treatment of emotional and mental health concerns. It is very common for parents of children with serious health concerns to receive psychiatric help managing their distress.
  • Reach out to friends and family. Be honest about what you need and what you don’t need, and don’t feel like you need to return calls or messages immediately. Use social media to help communicate only the information you want to share. This can be helpful for families to avoid having to share the same message repeatedly. It is always okay to request privacy, and it is always okay to ask for help when you need it.

Seek support

IDF coordinates support groups, events, and one-on-one connections, so you never need to feel alone.

Support group

This page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice.