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Caregiver Stress Syndrome: Living with Children with Allergic Conditions

By Tiffany Taft (bio below)

Ask any parent of a child with a chronic illness if they experience stress and I suspect that they’d look at you like you were a bit off your rocker.  Of course caring for a child with an illness comes with stress, and this stress can impact the whole household.  But what is “stress,” exactly?  And more specifically, what is “caregiver stress” and how does it relate to things like illness symptoms, its treatment, and the quality of the lives of those affected by the illness?  Researchers across the globe have focused efforts on understanding parent-caregiver stress, with many studies on parents of children living with allergic conditions such as asthma, food allergies, and eczema.  My personal research is with parents of children affected by Eosinophilic Gastrointestinal Disorders (EGIDs) such as eosinophilic esophagitis.

Before I continue, I should say that stress isn’t always a bad thing.  It can be a great motivator.  But there is a tipping point where stress becomes a burden on our mental and physical resources, making doing the simplest tasks feel like climbing a mountain.  It’s when stress passes this line, which may be different for you than the parent sitting next to you, that we see many negative effects.

So what do we know about caregiver stress, in general?  We know we can categorize caregiver stress four ways:

1) Communication, such as explaining your child’s food allergies to others.

2) Emotional functioning, such as worrying about the long term impact of asthma.

3) Managing Medical Care, including making decisions about what eczema medication your child will take.

4) Role functioning, such as attending to the needs of your other children or spouse.

This may seem to over-simplify individual experiences, but it helps us ensure everyone who is researching caregiver stress is measuring the same thing so we can make meaningful comparisons.

Researchers have identified something called “Caregiver Stress Syndrome” which is characterized by grief, anxiety and feelings of helplessness.  People with Caregiver Stress Syndrome may also experience insomnia (rates as high as 86%) and fatigue related to taking care of an ill loved one.  These symptoms result from both acute, or immediate, stress such as a serious flare up in symptoms requiring hospitalization and chronic, long term, stress from managing day-to-day tasks like taking medications or calling doctor’s offices for test results.

When we survey parents experiencing caregiver stress we hear that they engage in fewer enjoyable activities, socialize less, and engage in less self-care. Parents also report more personal health concerns, depression, marriage issues, and family discord. In other words, the quality of their life is reduced significantly.  We know that children who live with allergic conditions tend to report greater impact on their daily life than children with other chronic illnesses which may, in part, be due to a feeling of “living with risk” that is inherent in many of these conditions – and a feeling most likely shared by their parents.

Here are some of the things parents of children with allergic conditions tell us:

  • In parents of children with food allergies, 41% report significant caregiver stress, 49% state that food allergy reduces the family’s social activities, and 34% report reduced school attendance.  The majority also report a significant impact on family meals.
  • Parents of children with asthma often report a sense of loss of self, fatigue, and exhaustion.  Interestingly, depression and parent stress predict increases in their child’s asthma symptoms (inflammation) regardless of the child’s psychological state.
  • 46% of parents of children with EGIDs report significant anxiety and 28% experience symptoms of depression.  Parent mental health predicted caregiver stress more than the child’s illness severity or treatments.
  • Mothers of children with eczema report greater levels of caregiver stress than parents of children with Type 1 diabetes or deafness, and similar stress levels of those with children using tube feedings.
  • When comparing both parents, mothers of children with food allergies report a greater negative effect on their quality of life, more anxiety and caregiver stress than fathers.

This is a very important topic and I’ve only covered a tiny portion of what’s at play in the lives of children living with allergic conditions and the parents who care for them.  The take-home point of this post is that being a caregiver is stressful, and while that stress may motivate you to seek the best treatment and opportunities for your child, it’s vital to check-in with yourself and evaluate if stress has crossed that line into negatively affecting your life.  How is your mental well-being?  Your sleep?  Your support system?  How do you cope with stress and does it help?  If you conclude that you’re feeling overwhelmed, you may want to consider help from a professional with expertise in helping parent-caregivers cope.  We must take care of ourselves before we can take care of others.

I’d like to thank Jennifer for giving me the opportunity to share my perspective with you.  If you have any questions, feel free to email me at ttaft@opbmed.com.  You can also follow us on Facebook and Twitter.

tiffany taftBio: Dr. Tiffany Taft is a licensed clinical psychologist who specializes in the psychology of chronic illness.  She is co-owner of Oak Park Behavioral Medicine LLC, a private practice near Chicago, where she works with children and adults with chronic conditions.  Dr. Taft is also an Assistant Professor at Northwestern University Feinberg School of Medicine, where she worked in the division of gastroenterology for 8 years doing research and seeing clients with chronic digestive conditions. She published the first study evaluating caregiver stress in parents of children with EGIDs, as well as several other studies on the psychology and social effects of chronic digestive illness. Dr. Taft is a 2009 graduate from the Chicago School of Professional Psychology and is an active member of the Crohn’s & Colitis Foundation of America, including volunteering at Camp Oasis – a summer camp for children affected by Crohn’s Disease and Ulcerative Colitis.  

7 Comments Post a comment
  1. Rhonda #

    I have a child with MULTIPLE food allergies, (severe life threatening)… I have witnessed ER visits that still haunt me today. I feel I am always waiting to walk on a mine field. A therapist has just diagnosed me with PTSD, depression and anxiety. I used to have a false sense of comfort, until I experienced a horrible life-threatening episode. Now I am just hyper vigiliant making every effort for my child to remain safe. The worst part is when ppl look at you like you are making it up. It is so hurtful.

    Like

    December 24, 2012
    • People can be so hurtful, but I find it’s because they just don’t understand and haven’t been in our shoes. It must be very strange for them to see our lives as food allergies are just so foreign a concept for them. I think you are doing the right think by speaking to a professional about your feelings. So may parents don’t do this and it’s a critical step for many in their food allergy journey.

      Like

      December 27, 2012
    • Dr. Taft #

      These life-threatening episodes can be incredibly traumatic. I’m glad you’re getting some help. The best treatment, although it’s very hard, is to talk about your trauma. It helps these memories be stored properly in your brain so they’re not so intrusive. Unfortunately many people are insensitive about these things for many reasons. I hope you do have some people in your life who get it. Stick with them for people to go to and vent.

      Like

      December 28, 2012
  2. Karen #

    I also would like to see comparion studies with parents of children with Autism. I am a Mom with two kids on the Autism Spectrum, and in very different places. My 11 yr. old daughter is labeled PDD-NOS and is highly intelligent, and my son is 9 yrs. old, with severe classic autism, besides other disabilities (dwarfism, hand deformities, etc- including athsma, eczema, and a mysterious rash that comes and goes, that none of his doctors can pinpoint). For the past 5 years, I have been disabled due to clinical depression and generalized Anxiety disorder, which I had before my kids were born, but got significantly worse by the time my son was 3 yrs. old. In addition, I have Fibromyalgia, and most recently, my husband has become an insulin dependent diabetic and cannot drive as a result. Before I was disabled, I used to be a teacher of Deaf kids with other handicaps, which is a high stress job in and of itself, but was something I could handle before kids. But now, my stress levels have been so much over the years that I feel like I just sorta burned out at one point, and I have a much harder time coping with stress… it’s a totally different ball game between being only the teacher of special needs vs. being the parent 24/7, and Autism in and of itself has a tremendous amount of stress to it! More than just athsma or just eczema ever did for me. I have heard in Autism circles that parents of children with Autism have far exceeds most other types of illnesses or chronic conditions, and I have to say I believe it. My adrenal glands are probably all shot from enduring years and years of stress after stress after stress. I’ve also heard that the divorce rate of parents of kids with Autism is between 80-90%. So my husband and I are defying the odds there too. I think I have caregiver stress many times over, and I think that mental health services for such people as me are greatly underserved. So I’d be interested in sharing info. for any kind of study of care giver stress syndrome and Autism, if you or someone you know might be interested.

    Like

    December 19, 2012
  3. Jeannine #

    Thank you for your insights. I know it’s hard to measure but have you seen any comparison studies with parents of children with autism?

    Like

    December 18, 2012
    • Dr. Taft #

      I will definitely look. I’ve seen caregiver studies for kids with autism, just not sure who they compared them to. I’ll get back to you shortly.

      Like

      December 19, 2012
    • Dr. Taft #

      Ok, here’s what I found. There are many studies on caregiver stress and kids with autism, and some that compare autism to other developmental disabilities. I only found 2 that compare them to parents of kids with other chronic illness.

      A 2007 study found that parents of kids with ADHD or developmental disabilities such as autism reported significantly more stress than parents of kids with asthma or HIV.

      Another 2007 study published in Pediatrics compared parents of kids with Autism to kids with a variety of physical health conditions without any developmental issues and found:

      55% of parents of kids with autism reported significant aggravation compared to 12% in parents of kids with medical illness, which was only 1% higher than parents of kids without any special needs.

      Aggravation levels were much higher in parents of kids with autism who had recently had to receive special services.

      I also found a 2008 study in Pediatrics that showed that kids with autism and other chronic health problems (although the researchers had a pretty broad definition here) had issues with obtaining proper services, referrals, and other healthcare disparities compared to kids with chronic health problems without autism.

      I hope I answered your question. Let me know if you have any more.

      Like

      December 20, 2012

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