Teenagers� experiences of living with foodhypersensitivity: A qualitative study

IgE-mediated food hypersensitivity (FHS) (1)affects 2.3% of teenagers (2). Living with FHSrequires constant vigilance (3) and althoughpatients are advised to eliminate the offendingfood(s) from their diet (4), accidental ingestion isnot infrequent (5), leading to allergic reactions.In addition to developing physically, psycho-

logically and psychosocially (6–8), teenagers withFHS must also cope with increased responsibilityfor their allergy. Teenagers are at the greatestrisk of FHS-related fatality (9), and engage inFHS-related risk-taking behaviours (10). It istherefore important to understand the experi-ences of teenagers with FHS to learn how to helpthem manage the challenges of living with FHS.Previous studies (11–16) have used generic

health-related quality of life measures to com-pare the quality of life of children and teenagers

with FHS and their parents with other childrenand teenagers. This does not inform us about theteenagers� perspective of FHS. Only one previousstudy has examined this, exploring the experi-ences of Swedish teenagers with FHS (17). Thisstudy therefore aims to describe the experiencesof teenagers, living in the UK, who have FHS,using a qualitative approach. Such an approachhas previously been used successfully in FHSresearch to explore experiences (18).

MethodsSample and recruitment

Potential participants were identified from clin-ical records at paediatric allergy clinics based atSt Mary�s Hospital, Newport, Isle of Wight and

MacKenzie H, Roberts G, Van Laar D, Dean T. Teenagers� experiencesof living with food hypersensitivity: A qualitative study.Pediatr Allergy Immunol 2010: 21: 595–602.� 2009 John Wiley & Sons A/S

Teenagers are a high-risk group for food-hypersensitivity fatalities,engage in risk-taking behaviours and may experience impaired qualityof life. Understanding their experience is important to inform their care.This study aimed to describe the lived experiences of teenagers withfood hypersensitivity. Individual semi-structured interviews were con-ducted with 21 teenagers (13–18 yr) with food hypersensitivity to avariety of foods and analysed using a phenomenological approach.Teenagers described living with (or coming to know) food hypersensi-tivity (FHS) as a way of life but still found living with food hypersen-sitivity to be burdensome. A necessary part of living with foodhypersensitivity was coping with associated burden; a variety of copingstrategies were employed to this effect. Teenagers described ways inwhich the burden of living with food hypersensitivity was alleviated orexacerbated by others. Management of food hypersensitivity was basedon an assessment of acceptable risk resulting in varying levels of pre-caution taking. Teenagers� understanding of their FHS and ability tocope with it needs to be regularly assessed. Educational support may berequired to ensure they take an appropriate level of precautions tominimize the chance of future reactions while not over compromisingtheir quality of life. Psychological support may be required to help themto utilize healthy adaptive strategies to cope with the stresses of livingwith FHS. This approach is also likely to facilitate the smooth handoverof responsibility from parent to teenager.

Heather MacKenzie1, GrahamRoberts2, Darren van Laar3 andTaraneh Dean1

1School of Health Sciences and Social Work,University of Portsmouth, Portsmouth, UK, 2PaediatricAllergy and Respiratory Medicine, University ChildHealth, Southampton University Hospital NHS Trust,Southampton, UK, 3Department of Psychology,University of Portsmouth, Portsmouth, UK

Key words: adolescent; food hypersensitivity

Taraneh Dean, School of Health Sciences and SocialWork, University of Portsmouth, James WatsonWest, 2 King Richard 1st Road, Portsmouth, PO1 2FR,UKTel.: +44 (0)23 9284 4405Fax: +44 (0)23 9284 4402E-mail: tara.dean@port.ac.uk

Accepted 10 July 2009

Pediatr Allergy Immunol 2010: 21: 595–602

DOI: 10.1111/j.1399-3038.2009.00938.x

� 2009 John Wiley & Sons A/S

PEDIATRIC ALLERGY AND

IMMUNOLOGY

595

St Mary�s Hospital, Portsmouth. They all hadevidence of IgE-mediated FHS on the basis of apositive food challenge, diagnostic skin prick testor serum-specific IgE results (19) or a diagnosticclinical history with evidence of sensitisation(20). Patients with serious concomitant non-allergic disease were excluded. The parents ofthose fitting the eligibility criteria were sent aninformation pack about the study and asked topass this on to their son or daughter if they werehappy for them to be invited to take part.Teenagers were provided with a letter of invita-tion and an information sheet. They were askedto return a reply slip if they wished to take partand were contacted by telephone to arrange asuitable time and place for the interview. Recruit-ment continued until data saturation was reached(21).After giving informed consent, semi-struc-

tured audio taped interviews (lasting 20–70 min) were conducted (without parents) toenable participants to describe their experiencefrom their perspective. Medline searches wereconducted to identify relevant literature on theexperiences and quality of life of teenagers(healthy, with chronic illness e.g. asthma andwith FHS) and also salient literature on man-aging FHS. Keywords included �food allergy��food hypersensitivity� �quality of life� �living��experiences� �teenagers� and �adolescents�. Keythemes from this literature, for example, theareas of life that may be important to teenagersand/or that may be affected by FHS, were usedto inform the development of the topic guide(22). However, since semi-structured interviewswere conducted, this guide contained a list oftopics that could be covered but did not specifyexact questions or the order in which topicswere to be addressed. In general, the interviewswere led by those issues raised as salient by theparticipant.Interviews aimed to gain a description of the

individual�s experience (23), and, as far as pos-sible, were participant led. During the interview,open questions were used to identify what aspectsof their experiences with FHS were important tothe participant, for example:‘In general, how do you feel about having a food

allergy?’Probes were used to elicit more detailed

description from participants clarifying points,expanding upon description and exploring issuesin more depth.Participants were sent a copy of the resulting

verbatim transcript to verify that it agreed withtheir memory of the interview. Ethical approvalwas granted by the Isle of Wight, Portsmouth

and South-East Hampshire NHS Local ResearchEthics Committee (06/Q1701/59).

Data analysis

Data analysis followed the phenomenologicalmethod of Giorgi and Giorgi (24) to generatethemes that could be used to describe thepatterns of experience described by the partici-pants. Throughout data analysis the researcherfocused on the interview data and put anypreconceptions about the topic aside (a journalwas kept for this purpose) to prevent theminfluencing the analysis (25).

ResultsCharacteristics of participants

In the course of data collection, 45 patients wereinvited to participate, of these 21 teenagers (aged13–18 yr) agreed to take part in the study (47%).Interviews were conducted by HM at a venue ofthe participant�s choice (hospital, university orhome). A spectrum of age, food hypersensitivitiesand reaction severity were covered by the sample(see Table 1).

Themes

The analysis identified two patterns whichdescribe the experience of living with FHS as ateenager. The patterns are explained by fourmain themes, which are described below. Thefirst pattern describes the experience of themajority of the participants who had lived withFHS since infancy (N = 16). The second patterndescribes the experiences of the remainder of theparticipants (N = 5), who developed FHS laterin childhood or adolescence.All four themes relate to both patterns of the

experiences of teenagers with FHS i.e. forteenagers diagnosed in early (pattern 1) vs.late childhood (pattern 2). However, the firsttheme differs slightly between these groups,namely, that those diagnosed in early child-hood �live with FHS as a way of life� and thosediagnosed later in childhood have experiencedlife without FHS; they describe a period ofadjustment and then �come to know FHS as away of life�. This is explained further in thenext section. For both groups, once FHS hasbecome a way of life, the pattern of experienceis the same.

Theme 1: Living with FHS as a way of life/comingto know FHS as a way of life. Most participants

MacKenzie et al.

596

Tabl

e1.

Char

acte

ristic

sof

parti

cipa

nts

and

thei

rfo

odhy

pers

ensi

tiviti

es

Gend

er(a

gein

year

s)Fo

od(s

)alle

rgic

toCo

ncom

itant

alle

rgic

dise

ase

Age

ofon

set

(yr)

Sym

ptom

sFr

eque

ncy

ofre

actio

nEp

iPen

use

Them

e

Fem

ale

(13)

Pean

ut,t

ree

nuts

,co

conu

tAs

thm

a,ha

yfev

er,

ecze

ma,

pet

alle

rgy

6Ur

ticar

ia,d

iffic

ulty

brea

thin

gAp

prox

imat

ely

thre

ere

actio

ns;o

nepr

ompt

ing

diag

nosi

s(tr

eate

dat

hosp

ital)

and

two

subs

eque

nt(s

elf-t

reat

edw

ithan

tihis

tam

ine)

Nev

erus

ed1,

2,3,

4(A

ppro

ach

1*)

Fem

ale

(13)

Pean

ut,t

ree

nuts

,se

sam

eAs

thm

a,ha

yfev

erEa

rly child

hood

One

reac

tion

prom

ptin

gdi

agno

sis

Nev

erus

ed1,

2,3,

4(A

ppro

ach

2)Fe

mal

e(1

3)W

heat

,ora

nge

Non

e6–

7Ab

dom

inal

pain

Freq

uent

acci

dent

alin

gest

ion

(sel

f-tre

ated

)N

otpr

escr

ibed

1,2,

3,4

(App

roac

h1)

Fem

ale

(13)

Pean

ut,t

ree

nuts

,se

sam

eAs

thm

a,ha

yfev

er,

ecze

ma

7–8

Swol

len

lips

One

reac

tion

prom

ptin

gdi

agno

sis

(trea

ted

atho

spita

l);so

me

furth

erre

actio

ns(s

elf-t

reat

edw

ithan

tihis

tam

ine)

Nev

erus

ed1,

2,3,

4(A

ppro

ach

1)Fe

mal

e(1

4)Pe

anut

,tre

enu

tsHa

yfev

er,e

czem

a5–

7Sw

olle

nm

outh

,diff

icul

tybr

eath

ing,

vom

iting

,urti

caria

Four

reac

tions

;one

prom

ptin

gdi

agno

sis

(hos

pita

lized

),th

ree

furth

er(a

ccid

enta

ling

estio

n,on

ew

ent

toho

spita

lbu

tno

tad

mitt

ed,t

wo

self-

treat

ed)

Atho

spita

l1,

2,4

(App

roac

h2)

Fem

ale

(14)

Tree

nuts

,coc

onut

Hayf

ever

9–10

Urtic

aria

,tig

htth

roat

,vom

iting

,diff

icul

tybr

eath

ing

One

reac

tion

prom

ptin

gdi

agno

sis

(sel

f-tre

ated

).A

few

furth

erre

actio

ns,o

neof

whi

chle

adin

gto

hosp

italiz

atio

nN

ever

used

1,2,

3,4

(App

roac

h1)

Fem

ale

(14)

Whe

at,m

ilk,e

ggs,

pean

ut,t

ree

nuts

Hayf

ever

14Ab

dom

inal

pain

,vom

iting

Freq

uent

,bef

ore

diag

nosi

s.On

esi

nce

diag

nosi

sN

otpr

escr

ibed

1,2,

3,4

(App

roac

h2)

Fem

ale

(15)

Pean

ut,t

ree

nuts

,se

sam

eHa

yfev

er,e

czem

aEa

rly child

hood

Vom

iting

One

reac

tion

prom

ptin

gdi

agno

sis

Nev

erus

ed1,

2,3,

4(A

ppro

ach

2)Fe

mal

e(1

6)Pe

anut

,tre

enu

tsAs

thm

a,pe

tal

lerg

y,ho

use

dust

mite

alle

rgy

Early child

hood

Diffi

culty

brea

thin

gTw

ore

actio

ns;o

nepr

ompt

ing

diag

nosi

s,on

efu

rther

(hos

pita

lized

)N

ever

used

1,2,

3,4

(App

roac

h2)

Fem

ale

(17)

Egg,

pean

ut,k

iwi,

mus

tard

,ses

ame,

tree

nuts

Ecze

ma

Early child

hood

Anap

hyla

xis,

vom

iting

,sw

olle

nth

roat

,na

usea

Man

yre

actio

ns,a

llof

whi

chha

vese

lf-tre

ated

with

antih

ista

min

eN

ever

used

1,2,

3,4

(App

roac

h2)

Fem

ale

(17)

Whe

atN

one

10–1

2Ur

ticar

iaM

any

reac

tions

,sel

f-tre

ated

with

antih

ista

min

eN

otpr

escr

ibed

1,2,

3,4

(App

roac

h1)

Fem

ale

(18)

Pean

ut,t

ree

nuts

Asth

ma,

hayf

ever

2Ur

ticar

ia,d

iffic

ulty

brea

thin

g,an

aphy

-la

xis.

One

reac

tion

prom

ptin

gdi

agno

sis

(trea

ted

with

EpiP

enat

hosp

ital)

Atho

spita

l1,

2,3,

4(A

ppro

ach

1)Fe

mal

e(1

8)Pe

anut

,tre

enu

ts,

shel

lfish

Vesp

idal

lerg

y,as

thm

a2

Thro

atsw

olle

n,vo

miti

ng,d

iffic

ulty

brea

thin

g,ur

ticar

ia.

Seve

ralr

eact

ions

(hos

pita

lized

asa

child

)N

ever

used

2,3,

4(A

ppro

ach

1)Fe

mal

e(1

8)Pe

anut

,tre

enu

ts,

tom

ato,

avoc

ado,

kiw

i

Hors

eal

lerg

y,as

thm

a,ha

yfev

er,

ecze

ma

Early child

hood

Angi

odem

a,ur

ticar

iaOn

ere

actio

npr

ompt

ing

diag

nosi

s(tr

eate

dat

hosp

ital)

Nev

erus

ed1,

2,3,

4(A

ppro

ach

2)

Fem

ale

(18)

Shel

lfish

,pea

nut

Asth

ma

15Ur

ticar

iaA

few

reac

tions

;int

entio

nala

ndac

cide

ntal

inge

stio

n(s

elf-t

reat

edw

ithan

tihis

tam

ine)

Nev

erus

ed1,

2,3,

4(A

ppro

ach

2)M

ale

(13)

Pean

utAs

thm

a,ha

yfev

er,

hors

eal

lerg

yEa

rly child

hood

Angi

odem

a,di

fficu

ltybr

eath

ing

Thre

ere

actio

ns;o

new

hen

youn

gch

ild,o

nem

ildcu

ta-

neou

sre

actio

n(s

elf-t

reat

edw

ithan

tihis

tam

ine)

,one

seve

rere

actio

n(n

otre

cent

;tre

ated

atho

spita

l)

Not

pres

crib

ed1,

2,3,

4(A

ppro

ach

1)

Mal

e(1

3)Pe

anut

Asth

ma,

hayf

ever

,ho

rse

alle

rgy

Early child

hood

Angi

odem

aof

lips,

vom

iting

Two

reac

tions

;one

prom

ptin

gdi

agno

sis

and

one

aged

13(h

ospi

taliz

ed)

Nev

erus

ed1,

2,3,

4(A

ppro

ach

1)M

ale

(14)

Fish

,pea

nut

Asth

ma,

hayf

ever

,ec

zem

a7–

8Sw

olle

ney

es,i

tchy

thro

atFr

eque

ntre

actio

nsBy

hosp

ital

1,4 (App

roac

h3)

Teenagers� experiences of living with food hypersensitivity

597

had been diagnosed with FHS in early childhoodand therefore had not known life without FHS.They described how they had grown up with anawareness of and learning how to manage theirFHS. They were keen to stress that, for them,FHS was a way of life:‘It doesn�t really bother me because I�ve had

allergies all my life… It�s a way of life almost isn�tit?’ (P15, female, aged 17)Similarly, some participants described deciding

what precautions to take as automatic:‘I don�t really think about it…It�s just like when

you cross the road you think; working out whetheryou�ll get across in time…It�s in the backgroundhumming away all the time’ (P19, female, aged16).The experience was different for those who

discovered that they had FHS later in life andhad to come to terms with having FHS and learnabout how to manage it very quickly. During thisperiod teenagers described being either hyper-vigilant or alternatively being in denial abouthaving FHS. In time, participants adapted toliving with FHS, by accepting that they hadFHS, understanding more about the conditionand feeling competent to manage FHS. Theythen also experienced it as a way of life:‘It used to bother me a lot more than it does now

because, if you think of it like one day you’reeating whatever, you go to the supermarket andthink I fancy that or I fancy cereal or I fancy asandwich, and then the next day it was that youcan�t have a sandwich, you can�t have biscuits andit�s like �Aaargh!� It wasn�t even over a period oftime; it was like �You have to stop now� ’ (P6,female, aged 17).

Theme 2: Living with FHS as experiencing andcoping with burden. Although some participantsdescribed positive aspects of living with FHS, forexample, that it facilitates a healthy diet; mostfelt this was outweighed by the burden experi-enced as a result of living with FHS. This burdenwas experienced as: having considerations addi-tional to those of their peers, having to be moresensible, having to think about FHS and worry-ing about having reactions. Participants feltfrustrated at having to check if food was safefor them to eat, with difficulties finding safe food,asking in restaurants and carrying self-injectableadrenaline:‘It kind of annoys me when I go to barb-

eques…that they�ve got all these buns and every-thing that I�m not allowed…because it�s a bitembarrassing going to your friend�s barbe-que…and then bringing your own buns’ (P1, male,aged 13).Ta

ble

1.Co

ntin

ued

Gend

er(a

gein

year

s)Fo

od(s

)alle

rgic

toCo

ncom

itant

alle

rgic

dise

ase

Age

ofon

set

(yr)

Sym

ptom

sFr

eque

ncy

ofre

actio

nEp

iPen

use

Them

e

Mal

e(1

4)Pe

anut

Asth

ma,

hayf

ever

2Sw

olle

nlip

s,di

fficu

ltybr

eath

ing

Two

reac

tions

;one

prom

ptin

gdi

agno

sis,

one

oede

ma

Nev

erus

ed1,

3,4

(App

roac

h3)

Mal

e(1

5)Pe

anut

,tre

enu

tsAs

thm

a,ha

yfev

er,

ecze

ma

2Vo

miti

ng,u

rtica

ria,s

wol

len

eyes

Two

reac

tions

;one

prom

ptin

gdi

agno

sis,

two

furth

erN

ever

used

1,2,

3,4

(App

roac

h2)

Mal

e(1

7)Sh

ellfi

shEc

zem

a15

Diffi

culty

brea

thin

gOn

ere

actio

npr

ompt

ing

diag

nosi

sN

ever

used

1,2,

3,4

(App

roac

h2)

Diag

nosi

sof

food

hype

rsen

sitiv

itym

ade

onth

eba

sis

ofa

posi

tive

food

chal

leng

e,di

agno

stic

skin

pric

kte

stor

seru

m-s

peci

ficIg

Ere

sults

(18)

ora

diag

nost

iccl

inic

alhi

stor

yw

ithev

iden

ceof

sens

itisa

tion

(19)

.Th

emes

:1.L

ivin

gw

ithFH

Sas

aw

ayof

life/

com

ing

tokn

owFH

Sas

aw

ayof

life;

2.Li

ving

with

FHS

asex

perie

ncin

gan

dco

ping

with

burd

en;3

.Alle

viat

ion/

exac

erba

tion

ofth

ebu

rden

ofliv

ing

with

FHS;

and

4.Li

ving

with

FHS

invo

lves

man

agin

gac

cept

able

risk.

*App

roac

h:1.

Stric

tabo

utm

anag

ing

FHS.

Not

prep

ared

tota

keris

ks,r

egar

dles

sof

the

situ

atio

n;2.

Slig

htly

mor

eto

lera

ntof

risk

and

leve

lofp

reca

utio

nssi

tuat

ion-

depe

nden

t;3.

Mor

eto

lera

ntof

risk

and

took

few

erpr

ecau

tions

.FH

S,fo

odhy

pers

ensi

tivity

.

MacKenzie et al.

598

At being deprived of certain foods:‘…things that I�ve never been able to eat you

look at it and you think �That looks so nice� andyou know that you�ll never be able to eat it’ (P8,female, aged 15).And feeling either isolated within, or excluded

from, social activities:‘I �ve missed out on 4 parties because I just don�t

want to go. I didn�t want the aggravation of thefood because they don�t understand my nut allergy.So I missed out because I just didn�t want thehassle at all’ (P17, female, aged 13).The majority of participants had developed

strategies to cope with the burden experienced asa result of their FHS. They felt they had no otherchoice and refused to let FHS place limits upontheir life:‘It makes me more conscious of trying to be safe

and trying to be prepared. But it doesn�t stop medoing things…It makes me apprehensive aboutgoing out for meals and doing the odd thing but itdoesn�t stop me doing what I want to do’ (P14,female, aged 18).In general, participants adopted a positive

outlook and made downward comparisons, oftenplacing FHS in the context of other problems:‘There�s some people that have to be really

aware because they can just smell it and have areaction. I�m kind of grateful for that’ (P3, male,aged 14).Some participants described strategies they

used to cope with feelings of deprivation. Forexample, they talked about needing willpower toresist food they knew they should not be eating.Others would also seek alternative, enjoyablefoods that were safe for them to eat or focus onthe hope of outgrowing their allergy:‘If I �m out, you look at the whole shop of sweets

and think �Okay I fancy Malteasers. What is therethat�s wheat-free that is, not the same, but kind ofthe same?� ’ (P6, female, aged 17)

Theme 3: Alleviation/exacerbation of the burdenof living with FHS. Most participants describedfactors that could make life with FHS easier ormore difficult. Firstly, participants felt thathaving a good level of personal understandingand competence made life with FHS easier. Thisenabled them to make decisions about what foodwas safe for them to eat and alleviated anxiety:‘I�d be almost scared all the time if I didn�t know

about it because I�d be worried if I go into a shopwhere they had them, could I have a reaction? ButI know I won�t’ (P9, male, aged 15).Participants felt the lack of understanding

displayed by others, for example, failure to makeprovision for the needs of food hypersensitive

teenagers, was the most important external factorthat moderated the impact of FHS on their life.Lack of understanding and provision for the

needs of food hypersensitive teenagers was per-ceived as potentially dangerous; some teenagersfelt other people could not be trusted to takeprecautions on their behalf. Furthermore, lack ofunderstanding could make it difficult for them toassess the safety of foods and harder to eat out:‘If you say �Could you find out if it has eggs or

nuts in it for me please� and they�re like �Oh no, noit won�t have�…you have to go and insist that theyask. And it is quite annoying because you thinkwhy couldn�t you have just gone and asked ratherthan guessed and got it wrong’ (P15, female, aged17).

�May contain� labels annoyed many of theteenagers, who felt that they were used to servefood companies� interests rather than as indica-tors of genuine risk, and therefore placed unduerestrictions on their choice of food:‘It�s hard living with it because you�ve got to

check everything that you eat…you see a packetof crisps on the shelf but nowadays you�ve got tobe really careful because it may contain traces…Everything you look at now there�s just warnings’(P21, female, aged 18).Conversely, those who demonstrated under-

standing, be it friends, family, schools or foodmanufacturers, went a long way to relieving theburden teenagers with FHS experienced, andteenagers were grateful to those who went theextra mile to ensure their safety. For example,those who provided support and showed consid-eration of the teenagers� needs, made life withFHS easier:‘A restaurant I go to…they�ll change the

seasoning on what they cook it in, just so I canhave it. Which is quite nice’ (P5, female, aged 18).Provision of safe foods increased the choice of

food available to teenagers with FHS and helpedto relieve the feeling of being different andmissing out:‘…I don�t really miss out…they�ve started

introducing chicken kievs into their free fromrange…So I don�t feel left out. If they had chickenkiev I used to have a piece of chicken breastbut now I can have what they have’ (P12, female,aged 13).

Theme 4: Living with FHS involves managingacceptable risk. For the majority of participants,the biggest part of living with FHS involvedmanaging their allergy i.e. attempting to reducethe risk of having a reaction and increase thechances of receiving appropriate treatmentshould they need it. From participants� descrip-

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tions three approaches to FHS management canbe identified (see Fig. 1):1. Some of the teenagers were very strict about

managing their FHS and were not prepared totake risks, regardless of the situation:‘I �d forgotten my EpiPen…so we had to get one

of the teachers to drive me back to school…I hadto go and sit next to the teachers for the rest of theplay and I didn�t like it because I wanted to sit withmy friends…I�d rather have the EpiPen and notuse it than be suffering and die…I think it�s justanother thing to carry around sometimes; it�s just abit, it kind of weighs you down more, but it doesn�tmatter; I �d rather be alive than dead’ (P20,female, aged 14).These participants (n = 9) endured a high

level of burden as a result (represented by thelarge circle (A) on Fig. 1), which the majorityhad developed coping strategies to deal with.However, a small minority struggled to cope.2. Many teenagers (n = 10) were slightly more

tolerant of risk and the level of precautions theywould take was situation-dependent. They there-fore experienced varying levels of burden (repre-sented by the medium circle (B) on Fig. 1):‘We�re meant to carry them [EpiPens] around

school but I don�t. I don�t think there�s muchpoint…because I have a packed lunch…So I don�teat anything that I know might have a nut in’ (P11,female, aged 14).Many factors informed the level of precaution

these teenagers took, including their perception ofthe severity of their allergy and their knowledgeabout it, their trust/distrust of information aboutingredients or those catering on their behalf andthe accessibility of emergency treatment:‘When I first got the EpiPen I �d carry it

everywhere because I was really nervous about it.

But 2 years after, I feel comfortable now. And Iknow how to deal with it and what I can and can�teat’ (P13, male, aged 17).3. A small minority of the participants (n = 2)

were tolerant of risk and consequently took fewerprecautions:‘Well because I �ve had it since I was little I �ve

always known what I can and can�t have…therehave been occasions where I �ve bought a chocolatebar…I �ve thought �Ooh I �ve never had that before�and I �ve looked on the back, after I �ve taken acouple of bites, and it says hazelnuts or almondsand I think �Well nothing�s happened so far�. So Itake the risk’ (P4, male, aged 13).As a result of taking few precautions this

group experienced a lesser burden as a result oftheir FHS [represented by the smaller circle (C)on Fig. 1].

Discussion

A large part of living with FHS as a teenagerinvolved assessing risk and taking precautions toavoid having, or needing to treat, a reaction. Thisstudy found that precaution taking also dependedupon individual tolerance of risk. These findingssupport arguments that teenagers make consid-ered judgements about risk (26, 27), and offerseveral explanations for why teenagers with FHSdo not always take appropriate precautions.Teenagers may lack appropriate knowledge abouttheir FHS or sufficient knowledge about situa-tional risks, preventing them from making in-formed decisions; these are factors identified asaffecting non-adherence in young people (28). Forexample, one participant (with a history ofanaphylactic reactions) made management deci-sions basedon the potentially erroneous belief thattheir FHS could not be fatal. However, it couldalso be that some teenagers might be aware of therisks but, for them, burden or the desire to lead anormal life outweighs these. Further, some teen-agers may be naturally more or less cautious.Further research is needed to explore the mecha-nism bywhich teenagers with FHSmake decisionsrelating to the management of their illness.The teenagers described many ways in which

living with FHS affected them; the need forconstant vigilance was tiresome and frustrating; asentiment echoed in previous research (11, 17).Importantly, the findings suggest a relationshipbetween safety and burden; those strictest atmanaging their FHS who are likely at least riskof having contact with an allergen experience thehighest burden and vice versa. This poses adifficulty; balancing the safety and quality of lifeof food-allergic teenagers.

Fig. 1. Influence of tolerance to risk on level of precautionstaken and burden experienced.

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The findings of this study suggest two ways toimprove the quality of life of teenagers with FHSwithout compromising safety. The first is todecrease the burden teenagers experience as aresult of their FHS. For example, previousstudies (17, 29) have highlighted the need forbetter education of catering and waiting staff,which would make it easier and safer for teen-agers to eat away from home reducing theburden they face. This was supported by thefindings of this study. Some of the teenagersreported feeling that their allergy was not alwaystaken seriously and that waiting staff weresometimes reluctant to check the ingredients ofa dish or might say that they were �sure it wouldbe fine�. This left the teenagers unsure about thesafety of the food. Conversely, some teenagersreported that canteen or restaurant staff tooktheir allergy seriously and made sure to tell themwhat did and did not contain foods to which theywere allergic. This made it easier for the teenagerto know the ingredients of the food they wereeating. Further education might help to ensurethat waiting and catering staff are more aware offood allergies and the need to provide clear andreliable information. Further, improved labellingof foods with more focused use of �may contain�labels would help teenagers to purchase foodsthat are safe for them, as many teenagers foundthe labelling confusing and were unclear whetheror not it conveyed a genuine risk.In a minority of cases, teenagers endured

significant burden as a result of taking precau-tions for their FHS. At times, these are overlystrict leading to undue additional burden. Thishighlights the need to assess the accuracy ofteenagers� knowledge of the management of theirFHS providing further education where neces-sary. Multidisciplinary education in consort withmanagement plans has been found to reducefrequency of further reactions (5, 30, 31). Thisapproach may facilitate the handover of respon-sibility from parent to teenager by providing acheck of the teenagers� developing competence.It is not always possible to decrease the burden

of living with FHS. Hence, the second way toimprove the quality of life of teenagers with FHSis to help them cope with their burden. This studysuggests that the degree to which burden affectsthe teenagers� quality of life depends largely ontheir ability to cope with it. The teenagersdeveloped a range of strategies to do so, forexample, one teenager described that if theycould not have a dessert at a restaurant theymade sure to have a treat that they really enjoyedwhen they got home, so that they didn�t feel thatthey had missed out. Coping can be achieved by

either healthy adaptation (e.g. use of constructivecoping skills, acknowledging the illness as realityand/or tackling adaptive tasks) or by a maladap-tive response (e.g. denial leading to failure tofollow their management plan) (32). The develop-ment of constructive coping during adolescenceis especially important because coping skillsdeveloped in adolescence persist to adulthood(33). Constructive coping skills are also related towell-being (33), better adherence to medicaladvice (28), and to the friendships, school andleisure activities (34). It is therefore importantthat clinicians regularly assess how teenagers arelearning to cope with the burden they experience.For some, psychological support may help themto develop constructive coping strategies, andthereby lessen the impact of FHS on their qualityof life. This may particularly apply to teenagerswith newly diagnosed FHS.This study offers the first in-depth description of

the first-hand experiences of teenagers with FHSliving in the UK broadly supporting and extend-ing previous findings (11, 17). Several recommen-dations for practice and the direction of futureresearch can be made. Teenagers� understandingof the management of their FHS should beassessed and education, particularly managementplans, provided where appropriate (35, 36). Simi-larly, teenagers� development of appropriatecoping strategies should be assessed, as this isimportant for the short- and long-term safety andquality of life of teenagers with FHS. Any effortsto reduce the burden that teenagers with FHSexperience are also likely to improve their safetyand quality of life. Given the qualitative nature ofthis study it is important that the generalisabilityof the findings are assessed in further studies.These studies also need to focus on the effect ofage, experience of previous reactions, self-inject-able adrenaline ownership and attitude to risk onthe assessment and tolerance of risk and sub-sequent management of FHS.

AcknowledgmentsWe would like to acknowledge the help provided to us bymany people in the course of this study including the par-ticipants and their parents for giving up their time and thestaff from The David Hide Asthma and Allergy ResearchCentre at the St Mary�s Hospital, Isle of Wight and paedi-atric outpatients, St Mary�s Hospital, Portsmouth for theirgenerosity and invaluable help in recruitment.This study was supported by a studentship grant from

University of Portsmouth.

References

1. Johansson SGO, Bieber T, Dahl R, et al. Revisednomenclature for allergy for global use: Report of theNomenclature Review Committee of the World Allergy

Teenagers� experiences of living with food hypersensitivity

601

Organization, October 2003. J Allergy Clin Immunol2004: 113: 832–6.

2. Pereira B, Venter C, Grundy J, Clayton CB,Arshad HS, Dean T. Prevalence of sensitization tofood allergens, reported adverse reactions to foods, foodavoidance, and food hypersensitivity among teenagers.J Allergy Clin Immunol 2005: 116: 884–92.

3. Munoz-Furlong A. Daily coping strategies for patientsand their families. Pediatrics 2003: 111: 1654–61.

4. Sicherer SH, Teuber S, Adverse Reactions to Foods

Committee. Current approach to the diagnosis andmanagement of adverse reactions to foods. J AllergyClin Immunol 2004: 114: 1146–50.

5. Ewan PW, Clark AT. Efficacy of a management planbased on severity assessment in longitudinal and case-controlled studies of 747 children with nut allergy: Pro-posal for good practice. Clin ExpAllergy 2005: 35: 751–6.

6. Byrnes JP. Cognitive development during adolescence.In: Adams GR, Berzonsky MD, eds. BlackwellHandbook of Adolescence. Oxford: Blackwell Publish-ing Ltd, 2003: 227–46.

7. Hendry LB, Kloep M. Adolescence in Europe - animportant life phase?. In: Messer D, Millar S, eds.Exploring Developmental Psychology: From Infancy toAdolescence. London: Arnold, 1999: 383–400.

8. Rosenblum GD, Lewis M. Emotional Development inAdolescence. In: Adams GR, Berzonsky MD, eds.Blackwell Handbook of Adolescence. Oxford: BlackwellPublishing Ltd, 2003: 269–89.

9. Pumphrey RSH. Fatal anaphylaxis in the UK, 1992–2001. In: Bock G, Goode J, eds. Anaphylaxis. Chich-ester: Wiley, 2004: 116–32.

10. Sampson M, Munoz-Furlong A, Sicherer SH. Risk-taking and coping strategies of adolescents and youngadults with food allergy. J Allergy Clin Immunol 2006:117: 1440–5.

11. Akeson N, Worth A, Sheikh A. The psychosocialimpact of anaphylaxis on young people and theirparents. Clin Exp Allergy 2007: 37: 1213–20.

12. Avery NJ, King RM, Knight S, Hourihane JOB.Assessment of quality of life in children with peanutallergy. Pediatr Allergy Immunol 2003: 14: 378–82.

13. Cohen BL, Noone S, Munoz-Furlong A, Sicherer

SH. Development of a questionnaire to measure qualityof life in families with a child with food allergy.J Allergy Clin Immunol 2004: 114: 1159–63.

14. Marklund B, Ahlstedt S, Nordstrom G. Health-related quality of life among adolescents with allergy-like conditions – With emphasis on food hypersensi-tivity. Health Qual Life Outcomes 2004: 2: 65.

15. Primeau MN, Kagan R, Joseph L, et al. Thepsychological burden of peanut allergy as perceived byadults with peanut allergy and the parents ofpeanut-allergic children. Clin Exp Allergy 2000: 30:1135–43.

16. Sicherer SH, Noone SA, Munoz-Furlong A. Theimpact of childhood food allergy on quality of life. AnnAllergy 2001: 87: 461–4.

17. Marklund B, Wilde-Larsson B, Ahlstedt S, Nord-

strom G. Adolescents� experiences of being food-hypersensitive: A qualitative study. BMC Nurs 2007: 6:8.

18. Turke J, Venter C, Dean T. Maternal experiencesof peanut avoidance during pregnancy/lactation: An

in-depth qualitative study. Pediatr Allergy Immunol2005: 16: 512–8.

19. Roberts G, Lack G. Diagnosing peanut allergy withskin prick and specific IgE testing. J Allergy ClinImmunol 2005: 115: 1291–6.

20. Clark AT, Ewan PW. Interpretation of tests for nutallergy in one thousand patients, in relation to allergy ortolerance. Clin Exp Allergy 2003: 33: 1041–5.

21. Clifford C. Qualitative Research Methodology innursing and healthcare, 1st edn. London: ChurchillLivingstone, 1997.

22. Kvale S. Interviews: An Introduction to QualitativeResearch Interviewing. Thousand Oaks, CA: Sage, 1996.

23. Wimpenny P, Gass J. Interviewing in phenomenologyand grounded theory: Is there a difference? J Adv Nurs2000: 31: 1485–92.

24. Giorgi AP, Giorgi BM. The descriptive phenomeno-logical psychological method. In: Camic PM, Rhodes

JE, Yardley L, eds. Qualitative Research in Psycho-logy: Expanding Perspectives in Methodology andDesign. Washington: American Psychological Associa-tion, 2003: 243–73.

25. Beech I. Bracketing in phenomenological research.Nurse Res 1999: 6: 35–51.

26. Millstein SG, Halpern-Felsher BL. Judgementsabout risk and perceived invulnerability in adolescentsand young adults. J Res Adolesc 2002: 12: 399–422.

27. Rodham K, Brewer H, Mistral W, Stallard P.Adolescents� perception of risk and challenge: A quali-tative study. J Adoles 2006: 29: 261–72.

28. Stewart KS, Dearmun AK. Adherence to healthadvice amongst young people with chronic illness. JChild Health Care 2001: 5: 155–62.

29. Mandell D, Curtis R, Gold M, Hardie S. Anaphy-laxis: How do you live with it? Health Soc Work 2005:30: 325–35.

30. Ewan PW, Clark AT. Long-term prospective obser-vational study of patients with peanut and nut allergyafter participation in a management plan. Lancet 2001:357: 111–5.

31. Kapoor S, Roberts G, Bynoe Y, Gaughan M, Habibi

P, Lack G. Influence of a multidisciplinary paediatricallergy clinic on parental knowledge and rate of sub-sequent allergic reactions. Allergy 2004: 59: 185–91.

32. Moos RH, Schaefer A. The crisis of physical illness:An overview and conceptual approach. In: Moos RH,ed. Coping with Physical Illness: New Perspectives, 2ndedn. New York: Plenum Press, 1984: 3–25.

33. Schmidt S, Petersen C, Bullinger M. Coping withchronic disease from the perspective of children andadolescents – A conceptual framework and its implica-tions for participation. Child Care Health Dev 2003: 29:63–75.

34. Calsbeek H, Rijken M, Bekkers M, van Berge

Henegouwan GP, Dekker J. Coping in adolescentsand young adults with chronic digestive disorders:Impact on school and leisure activities. Psychol Health2006: 21: 447–62.

35. Muraro A, Roberts G, Clark A, et al. The manage-ment of anaphylaxis in childhood: Position paper of theEuropean academy of allergology and clinical immu-nology. Allergy 2007: 62: 857–71.

36. Roberts G. Anaphylaxis to foods. Pediatr AllergyImmunol 2007: 18: 543–8.

MacKenzie et al.

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