Cincinnati Children's Blog

Post-Traumatic Stress Disorder (PTSD) in Parents of Medically Fragile Children

Post-Traumatic Stress Disorder (PTSD) in Parents of Medically Fragile Children

In simple terms, post-traumatic stress disorder, or PTSD, is a psychiatric condition that develops after a traumatic event and can involve intense, disturbing thoughts, as well as changes in mood and behavior that interfere with day-to-day functioning.  When we think of PTSD, we often think of war veterans and police officers.

However, anyone who faces a life-threatening situation can develop this mental health condition, which can include parents of medically fragile children. In fact, about 10-20% of parents with medically fragile children meet the clinical criteria for PTSD.

Parents of medically complex children are four times more likely to develop PTSD

An additional 40% meet partial criteria. This means that they report some, but not all, of the symptoms required for diagnosis, and these symptoms can still cause distress. Put another way, parents of medically complex children are four times more likely to develop PTSD than the general population.

Parents are sometimes referred to as the “invisible patients.” This means that they are not the identified patient but their health and well-being are tied to the health and well-being of their child. Parents experiencing trauma symptoms may have a harder time coping with the demands of their child’s treatment, over or under-use the healthcare system, have a harder time building positive relationships (including with their children), or develop other physical or emotional problems.

The good news is there are a variety of different ways to help parents who are experiencing PTSD symptoms. Opening the lines of communication is the first step to help them connect to the resources they need to get better. Here’s what you need to know about PTSD in parents of medically fragile children, and how to get help:

PTSD in Parents of Medically Fragile Children

What It Looks Like

First, we need to identify what PTSD looks like. It can manifest a little differently in everyone, but ultimately there are four overarching symptoms. It’s normal for anyone to feel these symptoms – especially when faced with a traumatic situation. The difference for those with PTSD is that these symptoms will have taken place for over a month and cause ongoing and significant interference with daily functioning.

  • Re-experiencing
    People may experience disturbing or intrusive thoughts about the traumatic event that are difficult to get rid of and cause distress. Nightmares or flashbacks are types of re-experiencing. Flashbacks may be incredibly vivid and make people feel as if they are living through the trauma again in the present. When exposed to a trigger (e.g a certain place, sound, person, anniversary), those with PTSD have intense emotional or physical reactions.
  • Avoidance
    People with PTSD will avoid the things that remind them of the event, such as going to a hospital or avoiding thoughts and feelings related to the event. For instance, if their child endured a life-threatening event at a playground, they may avoid getting close to a playground for the fear of reliving the event in their minds.
  • Negative thoughts and feelings
    Mood becomes more negative. They may have continued feelings of guilt, anger, and sadness that interfere with daily functioning. As a result of this, they may withdraw from others.
  • Increased arousal or hypervigilance
    People exhibiting hypervigilance will constantly scan their situation for threats, which can be exhausting. Constantly on guard, they are likely to overreact to minor things or startle easily. They may also have difficulty concentrating or sleeping. Irritability and anger outbursts may be other signs of the body being on overdrive.

What Can Be Done About It

Everyone has a different coping style, and it’s not the number of social supports that someone has that makes the difference; it’s the extent to which that support is viewed as helpful. Here are some suggestions to help when a friend or family member is exhibiting symptoms of PTSD:

  • Encourage them to reach out to their own physician
    The parents’ own doctor is the best place to start. He or she can make a recommendation for a mental health professional who is a good fit. The parent can also reach out to members of their child’s treatment team to share concerns or ask for help.
  • Encourage them to look into potential treatments
    Their physician may refer them to a mental health professional who can offer treatments such as trauma-focused cognitive behavioral therapy (TF-CBT), an evidence-based intervention for trauma symptoms.  There are also medications that can help. Locally, the University of Cincinnati has a PTSD program. Nationally, the National Child Trauma Stress Network is a great resource.
  • Encourage healthy behaviors
    This is easier said than done, but when they take care of themselves physically, they will often feel better mentally. This includes sleeping, eating healthfully, practicing daily relaxation, and taking time for themselves. Parents with medically fragile children are at an increased risk for their own health problems (for example, cardiovascular disease), so working towards healthier habits may also reduce those risks.
  • Encourage them to activate their social support network by:
    • Identifying the right kind of help. Friends and families are integral to helping people recover from PTSD. However, offering the right kind of support is crucial since everyone is different. Often times there are people around who want to help, but don’t know how. Encourage the person to say what would be helpful to them (e.g., talking, distraction, childcare, meals).
    • Talking. Invite them to share their thoughts and feelings without offering advice. Practice sitting with them in their difficult thoughts and feelings, even though this can cause you some discomfort. Don’t try to solve what they are going through. Be witness to it. Continue to reach out and stay connected, invite them places, run errands, etc.
    • Establishing a “new normal.” Encourage them to try to resume normal routines, or establish a “new normal”. Going to work or school, planning family activities, engaging in hobbies, or attending faith organizations  may help if these activities are  valuable to them.
    • Connecting to disease-specific support groups. Disease-specific foundations or organizations serving medically complex children may provide parents with opportunities for support via educational programming, peer mentorship, camps, grants, or social connection with other parents who are facing/have faced similar experiences. Many of these organizations have programming for the whole family.

Raising a child who is medically complex poses substantial challenges beyond those intrinsic to all parenthood. It can bring a mix of anxiety, joy, setback, triumph, and sometimes, grief.  There are no easy answers. However, our goal is to help children and their families thrive no matter the circumstance. As the saying goes, you cannot pour from an empty cup.

If you are or someone you know is in this situation, it’s time to get help. There are people and interventions available to support parents in achieving improved emotional health. This, in turn, can encourage children’s resilience.

Please share this post with your friends and family members so that more people are aware of the potential for PTSD in parents of medically fragile children.

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