What's Good Advice for Parents Dealing With their Child's Chronic Illness?

What's Good Advice for Parents Dealing With their Child's Chronic Illness?

In the journey of managing a child's chronic illness, the wisdom of pediatric professionals becomes invaluable. One pediatrician emphasizes the importance of treating children beyond their illness. Alongside expert advice, we've gathered additional answers that encapsulate essential strategies for parents in similar situations. From prioritizing their own well-being to fostering open family communication, here are seven pieces of advice to navigate this challenging path.

  • Treat Children Beyond Their Illness
  • Prioritize Parental Well-Being
  • Seek Professional Counseling
  • Establish a Flexible Routine
  • Connect with Support Groups
  • Research the Child's Condition
  • Foster Open Family Communication

Treat Children Beyond Their Illness

Your child is not her illness, and the illness is not your child. Children with chronic illnesses are, first and foremost, children. They need to play, grow, and do childlike things, perhaps even more than health-typical kids. Some health problems might make certain activities problematic, so managing this takes creativity and a willingness to take chances. It's not always easy.

Roy BenarochPediatrician, Emory University

Prioritize Parental Well-Being

As a parent, I scoff at the airplane-mask and pitcher-filling metaphors, because my heart says it's ludicrous to focus on me and my needs when my child has needs. However, as a psychologist working with young people and their families, the number one piece of advice I find myself giving to parents of youth who are facing incredibly challenging situations is to manage their own well-being first. In short, the advice I give is to go against your heart in this moment.

Take the time you need so that you can be what your child needs. A child who is scared is not going to benefit from a parent who is so stressed that they can't hold their child's fear for them. Your child needs you to be their strength. They need to know that you see them as more than their illness, that you are strong enough to hear them say they are scared or in pain.

If you are stuck in your own pain and distress and stretched thin because you haven't taken care of yourself physically or emotionally, there is no way you can be the support system your child needs. Go against that immediate pull at your heart, put on your mask, and fill your pitcher so you can be the parent your child needs.

Ashley E. Poklar
Ashley E. PoklarFounder, A Poklar Ponders

Seek Professional Counseling

A child's chronic illness can create emotional upheaval within a family, which is why professional counseling is advised. Mental health professionals who specialize in chronic illnesses can offer tools for coping, useful for both the child and parents. These strategies help families navigate the complex emotions and challenges that come with long-term health issues.

Counseling can also offer a safe space for each family member to express their fears and concerns without judgment. Working with a counselor can improve the overall resilience of the family. Seek a qualified counselor to support your family's emotional needs during this time.

Establish a Flexible Routine

When a child is diagnosed with a chronic illness, establishing a structured routine can provide a sense of normalcy and stability. Consistent meal times, bedtimes, and medication schedules are comforting in their predictability, but it's important to stay flexible. Flexibility is key to accommodating unexpected hospital visits or changes in the child's health.

A balance between routine and adaptability can reduce stress and make the management of the illness more manageable. Strive to create a routine that meets your child's needs but can be adjusted when necessary.

Connect with Support Groups

Finding a community through support groups can be incredibly valuable when dealing with a child's chronic illness. These groups are a source of emotional support and practical advice from others who understand what you're going through. They provide a platform to share stories, solutions, and encouragement in a judgment-free environment.

Connecting with others can alleviate feelings of isolation and help parents learn new ways of handling their situation. Look for local or online support groups to connect with families who can relate to your experiences.

Research the Child's Condition

Understanding a child's chronic illness is crucial in managing their care effectively. Parents should thoroughly research the condition, using reputable sources to gather information. Knowledge about the illness helps in making informed decisions regarding treatments and day-to-day management.

It also equips parents to advocate for their child's needs in educational and medical settings. Educate yourselves about every aspect of your child's condition and stay updated on new developments or treatments.

Foster Open Family Communication

Clear and open communication is essential in families dealing with chronic illnesses. It's important that parents encourage everyone in the family to share their thoughts and feelings openly, without fear of negative consequences. This practice fosters a supportive environment where the child feels loved and understood.

Parents should also communicate clearly with medical professionals and educators to ensure their child's needs are met. Make it a priority to maintain open lines of communication within your family and with those supporting your child.

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