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Improving Quality of Life for Campers With Severe Food Allergy
When was the last time you gave a second thought to going out to dinner? Attending a gathering of friends? Sending your children to school? Participating in a leisure activity? These are daily events and interactions that shape each of us. We develop a sense of self, build communication skills, and foster an environment to engage with others through these events. A prevalent commonality within these events is the inclusion of food. Rarely do we participate in family or community activities where food is not associated.
Children with severe food allergy (SFA) deal with the challenges of daily food restriction and monitoring. SFA is an immune-mediated response where the child has an adverse reaction to food, and it affects six to eight percent of the pediatric population (NIAID 2006). The eight most common food allergens include milk, eggs, soy, peanuts, tree nuts, wheat, fish, and shellfish. According to the Asthma and Allergy Foundation of America (AAFA) (2005), these allergens account for 90 percent of all food allergies, but other potential food allergens do exist. A child who encounters a food allergen can experience anywhere from a mild reaction (i.e., rash) to a severe reaction (i.e., anaphylaxis). SFA is a condition that can have significant morbidity and mortality if not addressed on a daily basis (NIH 2006).
In many ways, SFA is a condition often overlooked in the world of medical conditions. The children look "normal," which often lends to the inattention given to this challenging condition. Noticeable physical attributes of an illness (i.e., hair loss from treatment, use of a wheelchair for mobility) provide a visual image and awareness of the medical needs of children. Furthermore, this awareness grows societal attention to the needs of these affected children. SFA children do not display a physical attribute of illness that garners slow societal recognition and accommodations for individuals whose existence is monopolized with food allergy challenges.
Access to food and the use of it within societal engagement is pervasive. Food is a tool through which we express "thank you," "congratulations," "get well," and many other occasions tied to milestones in our life. These societal norms create ongoing, legitimate concerns for families living with SFA. The family is intensely affected and cognizant of potential food hazards during each trip to the grocery store and in preparation of every family meal. Each event surrounding food has the potential to negatively impact the quality of life of SFA children and families. Research suggests that for families dealing with SFA "anxiety is constant though exposure is only sporadic" (Avery, King, Knight, and Hourihane, 2003).
Review of Literature
Research related to food allergy has been focused on genetics, immunology, and clinical trials regarding immune-based interventions (NIAID 2006). Very few studies have been conducted regarding the impact of severe food allergy on quality of life for children and families.
Primeau, Kagan, Joseph, Dufresne, Duffy, Prhcal, and Clarke (2000) compared quality of life and family relations between children and adults with peanut allergy to those children and adults with rheumatologic disease. Each of these groups (n = 150 peanut allergy children; n = 69 rheumatologic disease children) completed a quality of life questionnaire. The researchers found that children with peanut allergy experienced significantly more disruption in their daily activities and impairment in family-social activities than the children with rheumatologic disease. The intent is that this research will reinforce the support needed by families dealing with peanut allergy and motivate food manufacturers to create more "peanut free" options thus decreasing dietary restrictions and potential adverse health events.
Sicherer, Noone, and Munoz-Furlong (2001) studied quality of life concerns in children with food allergy. The researchers examined parental perception of physical and psychosocial functioning of their children with food allergy. Surveys were sent to members of the Food Allergy and Anaphylaxis Network (FAAN). Parents returned 253 surveys regarding children age five to eighteen. Families dealing with food allergy scored significantly lower on general health perception, emotional impact on the parent, and family activity limitations than previous established norms with the United States (U.S.) general population. Children with more than two food allergies had an even greater decrease in function than US norms. The researchers identified that childhood food allergy has a significant impact on the daily function of the family.
Avery, King, Knight, and Hourihane (2003) conducted a study where they compared the quality of life issues for children with peanut allergy (PA) and children with insulin dependent diabetes mellitus (IDDM). Each group of twenty children was given two quality of life questionnaires and a camera to document how their quality of life was affected over a one day period of time. PA children had statistically significant lower scores on the questionnaires than the IDDM children (p = .0004). PA children reported having greater fear of an adverse reaction and more anxiety when eating away from home. The PA children felt more restricted in their physical activities and the need to have rescue medications readily available at all times. The overall quality of life for PA children was decreased as compared to their IDDM counterparts.
Ostblom, Egmar, Gardulf, Lilja, and Wickman (2008) examined the impact of food hypersensitivity (FHS) on health-related quality of life (HRQL). The researchers conducted a case-controlled study of 1,378 nine-year-old children asking the children to complete a health questionnaire supplemented with a disease-specific questionnaire related to FHS. For comparison, 221 children with allergic disorders were evaluated in relation to the FHS group.
Results indicated that FHS children had significantly lower scores on physical functioning and role/social limitations than the children with allergic disorders (i.e., eczema, allergic rhinitis). The researchers also compared the FHS group with children without allergic disease. Results indicated that FHS children had significantly lower scores on role/social limitations, general health, emotional/behavioral, bodily pain, mental health, and parental emotional impact than children without allergic conditions. Overall, the researchers identified that FHS in children leads to food and activity restrictions, anxiety and fear, and societal challenges which impact the HRQL for children and their families (Ostblom, et al. 2008).
The few studies that addressed quality of life issues in severe food allergy all identified that children with SFA have a decreased quality of life as compared to children with other health conditions. Further work is needed to increase awareness and promote societal attentiveness regarding the challenges these families face on a daily basis.
The limited research identifies that families who are impacted by food allergy deal with many restrictions, frustrations, anxiety, and challenges as they navigate their daily activities. SFA families have little to no opportunity to experience vacation or respite as a family unit while having the security of safe food offerings. In an effort to meet the challenges of this unique population, The Center for Courageous Kids (CCK) chose to provide a weekend family retreat for children and families dealing with severe food allergies. This event would be an opportunity for families to have a fun weekend experience in a safe food environment.
To provide a unique experience for these families, CCK spent a significant amount of time completing research, development, and preparation. In order to have a comprehensive picture of the daily challenges with SFA, information was gathered from peer-reviewed literature, Web sites, and professional organizations. These resources provided a foundation of information on which to build the retreat program. A connection was made with a local food allergy support group to expand our knowledge base. Meetings were conducted with this group over several months to address components of the retreat including: (a) goals of the retreat; (b) food safety concerns; (c) cleaning criteria; and (d) medical support.
Family Retreat Preparation
Preparation for the food allergy retreat included three primary activities : (a) kitchen preparation; (b) cleaning procedures; and (c) education. Through the information gathered for the event, a pervasive concern emerged — the concern regarding cross-contamination. Therefore, education in the kitchen was specifically focused on this aspect of food preparation. The kitchen staff was educated regarding:
- Extreme hand washing measures.
- Cutting utensils were to be used for only one food item.
- The utensil had to be washed thoroughly between cutting/dicing of food items.
- Serving utensils were designated for one food item only.
- All food was to be served buffet style.
- Menu planning included removal of the top eight food allergens except dairy. Milk was available as an option. Specialty food manufacturers donated a variety of individually wrapped safe snacks to provide children with SFA.
- Copying the ingredient list of every food item used for the weekend event to provide to families upon arrival to the family retreat.
- All food and snacks were contained in the dining hall. Nothing other than water was allowed in program or activity areas.
- Only parents were allowed to help facilitate the clean up following meals. No campers were allowed to clear dishes or utensils from the tables.
- Tables for meals were positioned and grouped to accommodate distinct allergen-free sitting arrangements.
Food allergy concerns for these families were not only pertinent during a meal, but also following the completion of a meal when "touch contamination" can occur. Thus, it became imperative to develop a community touch team (CTT) to prepare for the event and a procedure to effectively clean during the retreat. The CTT was organized to address all the areas on camp considered community touch areas. These areas included doorknobs, water fountains, shower bars, light switches, and many others. Any area where multiple individuals would touch on a daily basis was deemed an element of this effort. During the twenty-four to forty-eight hours preceding the retreat, the CTT canvassed the entire facility cleaning all touch areas with Clorox wipes.
During the event, cleaning activities were also executed following a specified procedure. The initial step of the cleaning process was to have each and every individual not only wash their hands prior to eating, but also following completion of the meal. The potential exposure for "cross contamination" is at the greatest risk following meals with food residue remaining on hands and subsequently being transferred to community touch areas. Families and staff developed a game as part of the mandatory hand washing protocol. After each meal, specific staff were designated to clean the dining hall tables, chairs, and other potential community touch sites.
Education of staff, volunteers, and families was the most essential component of creating a safe environment for the SFA retreat. CCK functions with the support of volunteers who give of their time on the weekends to serve families. We provided education to staff and volunteers detailing the implications of SFA, the medical support available for the event, and their specific roles in keeping the camp environment safe for all children and families throughout the weekend.
An information packet was provided to families upon their arrival to camp. In the packet, specific information was provided to help maintain a safe SFA environment including: (a) hand washing protocols; (b) handling of food at the facility; (c) a photocopy of the ingredients for all food items being offered during the weekend retreat; and (d) the need for their assistance in keeping their children safe. Families were given the option to bring food for their SFA child if they had concerns about their child eating the food prepared at camp. A small number brought food, which was contained in their private sleeping quarters and served at meal time in the dining hall with all other food options.
Family Retreat Operation
When families are accepted to attend the family retreat (FR), they receive an acceptance packet providing information about the scheduling, activities, items to bring, and other helpful safety factors. In an effort to evaluate family concerns and the effectiveness of CCK interventions, families are asked to complete a pre- and post- questionnaire.
Upon check-in, families were given the pre-questionnaire which inquires about: (a) information they received from CCK to prepare for the event; (b) their expectations for the event; (c) their biggest concern regarding participation in the event; and (d) steps that should have been taken by the camp to prepare for the event. The postquestionnaire was provided to families on the day of departure which asked them to provide feedback regarding: (a) information families would like to receive to prepare for future SFA retreats; (b) if expectations were met; (c) if concerns about attending the FR were alleviated throughout the event; and (d) perception of adequate medical support during the event.
The feedback from families provided helpful insight regarding the family retreat event. Both pre- and post- questionnaire responses were provided as a measure to evaluate camp preparation and performance for the SFA retreat.
What information received prior to the weekend helped prepare you for the family retreat?
Families were most appreciative of the acceptance packet as it contained the most comprehensive information regarding the event. Early review of the acceptance packet information provided families the opportunity to call with further questions that may not have been answered through the written materials.
As expected, the biggest concern for families attending the retreat event was safety. SFA safety included food preparation and camp facility cleaning techniques.
It was validating to learn that approximately 25 percent of the families did not have significant concerns prior to attending the retreat. Our intent was that we were able to alleviate apprehensions through the preparation and education prior to the event.
In the pre-questionnaire, families were asked to identify three primary steps the camp should have taken to prepare for the SFA retreat. Their responses reaffirmed that our preparatory research, discussions, and activities were in compliance with the expectations of the families. A significant number of families indicated they expected food preparation to be our primary focus in creating this safe recreational experience.
Following the event, the staff was eager to assimilate the feedback provided by families and subsequently evaluate the preparatory work and the overall impact of the SFA family retreat. Responses by the families were overwhelmingly positive. Fifty-three percent of the families responded that expectations were met, while 43 percent reported that the camp experience exceeded the expectations. No families reported disappointment in the retreat or that expected outcomes were not achieved. Some feedback shared by families included:
"Yes. Our expectations were met and then some. This camp actually blew us away." "The camp was more than expected. Menu items were safe and were wonderful." "It was a great balance of allowing the kids to be "kids" while keeping them safe." "You went way beyond our expectations. This is a top notch operation!"
A second evaluation question asked of parents: Were your concerns about attending a family retreat al leviated throughout the weekend? The response was again overwhelmingly positive. One hundred percent of the families reported having a relaxing experience and feeling that they could allow their children to play without the concern of encountering allergens at the camp facility. Examples of some feedback included:
"Yes, at first we were concerned about the food that our child was allergic to, but the mandated hand washing and other preventative steps put our mind at ease."
"Thank you for allergy-friendly menus and food options."
"Absolutely. Thank you for all the cleaning precautions. It made us feel safe and helped moms and dads relax."
A final question was to identify if parents and families felt that adequate medical support was provided for the weekend event. During the weekend event, the camp provided a camp nurse, a pediatrician, an allergist, and an EMT. All were educated and prepared to handle potential allergen reactions. An adequate supply of epinephrine (EpiPens®), antihistamines, and other support medications were available for use.
All of the family participants (100 percent) reported comfort with the medical support provided. Some of the families’ comments included:
"There were clear directions on what to do should a reaction occur."
"It was great that there was an allergist participating."
"More than enough! The doctor came to our room to check on the common cold!"
"Yes, they were aware, involved, and available if there were any questions."
"Without a doubt. Thank you for having nurses and a pediatrician present."
The SFA family retreat at CCK was a great success. Families were exceedingly grateful to have the experience of respite and recreation with their children while knowing that food safety concerns had been addressed to provide a safe environment. During the entire weekend, there was not a single incident of allergic reaction or health alteration.
Parents were asked what information would be helpful to send to families to prepare for future events. Families (63 percent) reported that receiving a copy of the menu including all the food item labels prior to arriving at camp would help them better prepare. In the acceptance packet, the families were provided a list of tasks completed by camp staff in preparing for the event. Families (17 percent) also expressed that receiving this preparatory information prior to attending the event would help alleviate apprehension and anxiety.
The Center for Courageous Kids has planned a second severe food allergy retreat in 2009 in hopes of reaching more families who are facing the daily challenges of food monitoring, restriction, and lifestyle management in an effort to avoid potentially fatal reactions. Our hope is that more camps and recreation facilities will embrace the opportunity to serve this population and create opportunities for these families to have experiences of a lifetime that are memorable, fun, build self-esteem, and are physically safe for all family members.
The Center for Courageous Kids is a year-round camp facility that serves children with chronic disease, disability, and life-threatening illness. The mission is to uplift children by creating experiences year-round that are memorable, exciting, fun, build self-esteem, are physically safe, and medically sound. The camp opened its operations in February 2008 and has served individuals through family retreats and summer camp sessions including hemophilia, cancer, asthma, heart, spina bifida, epilepsy, Down syndrome, autism, juvenile arthritis, sickle cell disease, and many others. You can receive more information about The Center for Courageous Kids at www.courageouskids.org or by contacting 270-618-2900.
Asthma and Allergy Foundation of America (2005). Food Allergies. Retrieved from http://www.aafa.org/display. cfm?id=9&sub=20&cont=286.
Avery, N. J., King, R. M., Knight, S., & Hourihane, J. B. (2003). Assessment of quality of life in children with peanut allergy. Pediatric Allergy and Immunology, 14, 378-382.
James, J. M. (2001). Food allergy and quality of life issues. Annals of Allergy, Asthma, and Immunology, 87, 443-445.
Joo, S. H., & Wood. R. A. (2003). The impact of childhood food allergy on quality of life. Pediatrics, 112, 459.
National Institutes of Allergy and Infectious Diseases (2006). Report of the NIH expert panel on food allergy research (NIH report). Bethesda, MD: Author.
Ostblom, E., Egmar, A. C., Gardulf, A., Lilja, G., & Wickman, M. (2008). The impact of food hypersensitivity reported in 9-year-old children by their parents on health-related quality of life. Allergy, 63, 211-218.
Primeau, M. N., Kagan, R., Joseph, L., Lim, H., Dufresne, C., Duffy, C., Prhcal, D., & Clarke, A. (2000). The psychological burden of peanut allergy as perceived by adults with peanut allergy and the parents of peanut-allergic children. Clinical and Experimental Allergy, 30, 1135-1143.
Sicherer, S. H., Noone, S. A., & Munoz-Furlong, A. (2001). The impact of childhood food allergy on quality of life. Annals of Allergy, Asthma, and Immunology, 87, 461-465.
Tracey Gaslin R.N., Ph.D., C.R.N.I., C.P.N.P. is the medical director at The Center for Courageous Kids. Dr. Gaslin’s background is in nursing education and research with an emphasis on children with bleeding disorders, chronic health, and infusion therapy. She has worked as a camp nurse/nurse practitioner for the past twelve years for children with hematologic and oncologic conditions.
Judy Snoddy is the camper recruiter at The Center for Courageous Kids. She transitioned from a thirteen-year career in Information Technology with one of the "big three" professional services firm to recruiting children and families at The Center for Courageous Kids. Her passion is service, missions, and advancement in pediatric quality of life. She advocates for the center at hospitals, foundations, parent support groups, and a variety of organizations and events.
Originally published in the 2009 July/August issue of Camping Magazine.