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By Tracey C. Gaslin R.N., Ph.D., C.R.N.I., C.P.N.P.,
and Judy Snoddy
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 al lergy (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.
Intervention
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.
Evaluative
Feedback
Pre-Questionnaire Responses
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.
Concerns
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.
Primary Steps
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.
Post-Questionnaire
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."
Success
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.
References
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.
Originally published in the 2009 July/August
issue of Camping Magazine.
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