This is a great interview from the Allergy Moms.
From Stressing to Blessing
Psychologist Rebecca Knibb conducts research into issues related to food allergy and intolerance, specifically looking at psychological distress, quality of life (QoL) and coping in children and parents.
Dr. Knibb was kind enough to share her expertise with us in the following interview.
Gina Clowes: Dr. Knibb, thank you so much for taking the time to answer our questions. We don’t see nearly enough research on the psychological burden of food allergies on families. And I know you’ve had a particular focus on mothers, who often bear the brunt of responsibility for helping the entire family acclimate to life with food allergies.
So, how stressed areallergy moms? Would you elaborate on the “shocking” levels of stress?
Dr. Rebecca Knibb: Stress levels found in mothers is very high, higher than the norm levels for healthy females with no children with a chronic illness. The levels are also higher than seen in samples of people with very stressful jobs such as inner city policeman or Accident and Emergency nurses.
GC: One of the hardest parts of my job is talking with mothers following their child’s anaphylactic reaction. It is a very stressful event and some moms are left with little support from friends or family. Had they experienced a car accident, most everyone could relate. But in these cases, if the child is alive and well, in the next day or two, the whole family is expected to just carry on as if nothing happened. But some parents don’t feel able to to do so.
Do you have any advice for children and families to heal after the trauma of a life-threatening reaction?
RK:This is a very difficult one. I think support here is very important from people who have gone through the same experience. It is hard for people who know little about allergy to understand how frightening this experience can be for people. I think organizations such as the one you run is invaluable for providing support like this. Sometimes the consequences of experiencing a life-threatening reaction such as heightened anxiety and estimation of risk resolve over time as the allergy is well managed. However, sometimes the anxiety can be long lasting and here the person may need further help. Things such as Cognitive Behavioral Therapy may be able to help with lowering that anxiety and providing better coping strategies for it.
GC: You mention patients with a “strong illness identity” throughout your work. For example: “A strong illness identity and emotional representations of the allergy were associated with higher levels of psychological distress; as were less adaptive coping strategies such as focusing on and venting of emotions.” Would you explain what this means and why a strong illness identity is associated with more psychological distress?
RK:A “strong illness identity” merely means the person is suffering from more symptoms, in this case to the allergen. So it isn’t surprising really that someone with more symptoms suffers from more psychological distress.
GC: Would you explain how or why strong personal control beliefs, and adaptive coping strategies such as positive reinterpretation were associated with lower levels of distress?
RK:Here the control beliefs are the belief that you have control over your allergy. This really goes hand in hand with treatment control, so if you feel you have a treatment that helps, you will have lower levels of distress. This is fine for things like hay fever, not so good for food allergy where this no treatment other than avoidance. Developing an understanding of your allergy and the view that you are in control of the management of that allergy should be encouraged.
Positive reinterpretation is an adaptive coping strategy where you look at the positive side of the things that may cause you stress. So seeing the positive side of things rather than the negative may help. However this is not something that can be taught as such, and sometimes comes down to the disposition of the personality and being more of an optimist. But it is an outlook that could be encouraged.
GC: So, did you find that when a child was coping well, his parent/s were also?
RK: I think it is the other way round really. If the parents cope well, this behavior is learned by the child. Children are very perceptive and learn vicariously, i.e. they learn by watching how parents react to situations. If a parent is very anxious, the child tends to be anxious also.
GC: Do mothers typically overestimate the impact that peanut allergy or food allergies have on their childrens quality of life?
RK: Yes they do, but this may be because they have more of a realistic understanding of the burden of allergy as they may do all the cooking, reading food labels etc.
GC: Is a mother’s quality of life affected more by food allergies than the father’s or the child’s?
Mother’s quality of life tends to be affected more than fathers but I would not say they are affected more than their child other than for the reason above regarding them taking on the burden of looking after the child with the allergen. It could also compromise quality of life regarding family activities, social lives, family holidays, eating out etc.
GC: How exactly does it affect them?
RK: This we do not know yet. Obviously it affects their quality of life and we do know that chronic stress can lead to poorer physical health outcomes and put you at greater risk for conditions such as coronary heart disease. It can also mean you are more susceptible to getting minor infections such as a cold, and can lead to longer recovery times. Stress can have a large affect on our physiology. This needs to be looked at more closely in those who care for children with food allergy.
GC: What can help?
RK: Be informed, get as much accurate information as possible regarding management and share the responsibility. Get fathers to help with this and get the child involved as much as possible in doing things like reading food labels and cooking. Learning by experience that their child can lead a pretty normal life and not have a bad reaction will slowly reduce anxiety levels. Getting positive feedback this way is a much more powerful way of reducing anxiety and stress than any other method.
GC: Are the mothers who are more stressed those who have children with more severe allergies or multiple allergies ?
RK: Having more than one allergy or to multiple foods certainly has a bigger impact, yes. Some studies have found that more severe reactions also lead to a bigger impact on QoL and others have not.
GC: How can we help these families cope?
RK: This is answered above really regarding trying to lead as normal a life as possible and try not to let allergy rule your life. The more you are able to do and the more you can help your child to do for themselves, the less anxious you and your child will be.
GC: How can we help our children be more resilient and less anxious?
They learn from us as parents and so if we are less anxious and more relaxed, they will be too. As above, get them involved as much as possible so they are not scared of the unknown. Often children are much more capable than we give them credit for.
GC: How can parents explain severe allergies to a child in a light that will foster coping and resilience rather than psychological distress?
RK: Be honest and give as much accurate information as possible, without overestimating the risk. And get them involved, so they can learn by experience. We are working at the moment on preparing age relevant educational material for food allergy and hope to be able to provide more guidance on this soon.
GC: What characteristics do you see among those who are coping well with food allergies?
RK:Those who do not let it rule their lives but find a way to do things every family likes to do, such as eating out, going on holiday etc, letting their child go on school trips, staying over at friends. Those that involve their children in managing their allergy rather than trying to do everything for them tend to be those that cope better.
GC: What characteristics do you see among children who are depressed or anxious?
RK: Only a few children tend to be very anxious and usually it is because one or more parents are very frightened about the allergy diagnosis and do not feel able to let their child lead a ‘normal’ life. Depression is even rarer in children.
GC: That is good to hear. Are there gender difference in how children or adults cope with food allergies?
RK: Definitely, we are seeing this more and more. Girls tend to report a higher impact on their QoL and have higher anxiety than boys. But often this might be because boys (and men) are less likely to tell you they are anxious!
GC: Is there anything else that you’d like to share?
RK: There are 1,000s of scientists all over the world conducting research with the sole aim of helping people with allergy and their families to live better lives. Just last week I was giving a talk at the European Congress for Allergy and there were over 8,000 delegates there. New discoveries, treatments and ways to improve quality of life are being made all the time and we will do our best to get this information out to the people who matter.
GC: Thank you so much Dr. Knibb for taking the time to share with us. We will be looking forward to hearing more from you in the future.
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Today, as some of my facebook friends read, I bought and made myself lemon poppy seed muffins. They were only for me. I am the only one that could eat them. When I typically go to the grocery I only buy what the kids can eat and what I’ll make Nathan for dinner. Our grocery bill is crazy. My boys aren’t even teenagers yet. There are just so many different foods we need for each person, it adds up quick. As i ate the muffins, yes I had two right away, I got to thinking about what I would make for dinner for just myself.
So I’m asking the question to all allergy parents what meals you have given up that you would love to fix for yourself!
Here are the 5 I would love to have.
1. Tuna noodle casserole. I know, sounds gross, but I’ve only had it a few times since being married. Nathan can’t have it with egg noodles so the few times I made it I used regular noodles. He probably can’t have it anymore since his allergies have gotten worse. That would definitely be number one.
2. Scrambled egg sandwich on toast. I don’t even buy eggs anymore. I maybe use 12 eggs in an entire year. Maybe.
3. Shredded chicken sandwich. It’s an Ohio thing. Think shredded chicken,cream of mushroom soup, cream of chicken soup and saltine crackers all mashed up and cooked together. Oh I just started drooling. Here’s a link to finding one of these yummy sandwiches if you’re ever in Ohio. http://www.chickensandwich.info/ Scroll down for the recipe for these yummy sandwiches.
4. Chicken and dumplings.
5. Grandpa’s grilled chicken with Hawaiian bread. Mom’s Lemon meringue pie for dessert!
Nothing too crazy. Things that I would definitely have in the rotation if I could.
That reminds me. I had to ask Gage questions for a “get to know me” sheet for school. One question was what is your favorite thing to eat. I asked him and he just stood there. I said just pretend you can eat anything you want. You should have seen him smile at that thought. He answered apples.
Both boys are successfully back in school. *big exhale* I could really use the little break, but at the same time if I don’t stay busy then I end up worrying about them all day.
This year things are a little different. Charlie knows the ropes and feels confident about staying safe. Gage’s pre-school has gone PEANUT FREE! Oh happy day! Granted he’s still got 20+ other allergens he needs to stay away from but the nuts are what got us into trouble last year and I don’t want to revisit that, or worse. Just knowing the other kids won’t be having nutter butter cookies, crackers and peanut butter or bringing in a peanut butter sandwich just makes me smile. I actually smile when I think about that.
Don’t ask me what was wrong with Gage. Just right at that second he decided he wasn’t happy and wasn’t going to smile.
After comparing to last years pictures I realized they each grew one brick taller!
Both became a bit more handsome. 🙂
Little Miss doesn’t enjoy me waking her up on school mornings.
For all of you allergy parents and kids of special needs
“Here’s to a wonderful, uneventful and educational school year!”
Milk with Hershey’s syrup warmed up to my boys is like Tinleigh needing her bottle first thing or me needing coffee first thing. Gage has gone a full week with out it. It’s been so hard for him fighting his addiction. Ever watch a 4-year-old go through withdraw?
I have tried and tried to make him something similar. Using coconut milk though the taste just can’t be the same. I’ve been making his coconut milk myself instead of buying it. I don’t want to risk having it cross contaminated with almonds or coming from Thailand and them not having to label their can with anything potentially dangerous to Gage.
Here’s the coconut milk recipe I follow: homemade coconut milk
• 2 cups unsweetened coconut flakes ( I use sweetened)
• 2 cups hot (not boiling) water
• 2 cups water
• 1 teaspoon vanilla (I omit this)
• 2 tablespoons local honey (I omit this too)
1. In a large bowl, soak the coconut in hot (not boiling) water for about 20 minutes.
2. Pour soaked coconut with its water, the remaining water, vanilla, and honey into the blender. Blend on high until mixed well.
3. In a large bowl, strain the liquid through a cheesecloth or nut milk bag. (I used a small wire strainer)
4. Store milk in mason jars and place them in the refrigerator. It should keep for about 3 days. (I just put mine in a plastic pitcher with lid.)
5. Serve and enjoy!
Basically I just use the water and sweetened coconut flakes. It’s sweet enough that way, you don’t need to add the vanilla or honey. I will try it with unsweetened at some point. I just had sweetened in the fridge. The first two small batches I made I did use the vanilla and honey and it was just way too sweet.
Onto the cocoa! This was actually hard to figure out. A little cocoa with some sugar and BOOM hot cocoa! Not the case. Because the coconut milk already has sweetness to it I kept over doing it with the sugar. Then I tried it with no sugar and it was bitter cocoa. I finally had to make an actual syrup for it to taste right. Thank you again to my friend Rachel for finding the perfect recipe. I had some other friends pass along recipes as well, thank you!
This specific recipe comes from Pennies on a Platter.
I followed this to a T.
- 1 cup water
- 1/2 cup unsweetened cocoa powder
- 2 cups sugar
- Pinch of salt
- ¼ teaspoon vanilla
Combine the water and cocoa powder in a medium saucepan. Heat over medium while stirring to dissolve the cocoa. Stir in the sugar until dissolved. Bring to a boil and heat for 3 minutes. Make sure the baby on your hip doesn’t distract you from the 3 minute time limit like mine did! It almost boiled over. Remove from the heat and mix in the salt and vanilla. Let set to cool.
I mixed 1-1/2 tbsp into Gage’s coconut milk and warmed it up for the standard 30 seconds.
As you can see Gage didn’t like it at first. Then Charlie tasted it and started to finish the glass. Gage quickly grabbed it away from him and decided he liked it too. PHEW! Thank you big brother for saving the day. Gage finished the cup and successfully had some again this morning. He doesn’t love it but it will have to do for now. Imagine drinking mocha coffee everyday for 2 years then one day having to switch to coconut mocha coffee. It wouldn’t be the same but you have to accept it.
Here’s to homemade coconut milk and chocolate syrup!
Wikipedia says Labor Day is an American federal holiday observed on the first Monday in September that celebrates the economic and social contributions of workers.
I’ve had 3 labor days of a different kind.
I LOVE them. I LIVE for them. I ADVOCATE for them. I help them grow physically, mentally and emotionally. They are everything to me. They are my Labors of love. 🙂