Journal of Pediatric Psychology, 40(6), 2015, 572–580

doi: 10.1093/jpepsy/jsv009
Advance Access Publication Date: 21 March 2015
Original Research Article

Children’s Food Allergies: Development of

the Food Allergy Management and
Adaptation Scale
Mary D. Klinnert,1,2 PHD, Elizabeth L. McQuaid,3,4 PHD,
David A. Fedele,5 PHD, Anna Faino,1 MS, Matthew Strand,6,7 PHD,
Jane Robinson,8,9 PHD, Dan Atkins,8,9 MD, David M. Fleischer,8,9 MD,
Jonathan O’B. Hourihane,10 MD, Sophia Cohen,1 BA, and
Hannah Fransen,11 MSW

Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015

1
Department of Pediatrics, National Jewish Health, 2Department of Psychiatry, University of Colorado School of
Medicine, 3Department of Psychiatry and Human Behavior, Alpert Medical School, Brown University, 4Bradley/
Hasbro Children’s Research Center, 5Department of Clinical & Health Psychology, University of Florida, 6Division of
Biostatistics & Bioinformatics, National Jewish Health, 7Department of Biostatistics & Informatics, University of
Colorado School of Public Health, 8Department of Pediatrics, University of Colorado School of Medicine, 9Allergy
Section, Children’s Hospital Colorado, 10Department of Paediatrics and Child Health, University College Cork, and
11
Graduate School of Social Work, University of Denver
All correspondence concerning this article should be addressed to Mary D. Klinnert, PHD, National Jewish Health, 1400
Jackson St., Denver, CO 80206, USA. E-mail: klinnertm@njhealth.org
Received August 22, 2014; revisions received January 19, 2015; accepted January 21, 2015

Abstract
Objective Develop a measure that evaluates effective pediatric food allergy (FA) management,
child and parent FA anxiety, and integration of FA into family life. Methods A semistructured
family interview was developed to evaluate FA management using a pilot sample (n ¼ 27). Rating
scales evaluated eight dimensions of FA management (FAMComposite), child anxiety, parent anxi-
ety, and overall balanced integration (BI). Families of children with IgE-mediated food allergies
(n ¼ 60, child age: 6–12) were recruited for interview and rating scale validation.
Results FAMComposite was correlated with physician ratings for families’ food avoidance and re-
action response readiness. FA anxiety was correlated with general anxiety measures for children,
but not parents. Parents’ FA anxiety was correlated with expectations of negative outcomes from
FA. Low BI was associated with poor quality of life and negative impact on family functioning.
Conclusions Preliminary analyses support Food Allergy Management and Adaptation Scale valid-
ity as a measure of family adaptation to pediatric FA.

Key words: family adaptation; management; pediatric food allergy; psychosocial adjustment.

Children’s food allergies are increasingly common, with current
U.S. prevalence estimates ranging up to 8% (Gupta et al.,
2011). Food allergy (FA) reactions that are mediated by immu-
noglobulin E (IgE) can cause hives, breathing difficulties, and
gastrointestinal symptoms. Reactions can progress to anaphy-
laxis, involving respiratory, cardiovascular, and/or gastrointesti-
nal symptoms (Boyce et al., 2010). Although rare, anaphylactic
reactions can result in death if not treated promptly and
effectively (Sicherer & Sampson, 2006). The negative impact of
FA on families can be pervasive. Families of children diagnosed
with FA report disruptions in daily activities, increased stress
and symptoms of anxiety and depression, and lower quality of
life (QoL) (Cummings, Knibb, King, & Lucas, 2010). Effective
family management of food allergies and psychosocial adjust-
ment to the chronic stresses of food allergies are key compo-
nents of families’ adaptation.

C The Author 2015. Published by Oxford University Press on behalf of the Society of Pediatric Psychology.
V
All rights reserved. For permissions, please e-mail: journals.permissions@oup.com 572
Development of the FAMAS
FA Management
Appropriate management of a child’s food allergies necessitates
food avoidance across home and social contexts, and response readi-
ness, including recognizing symptoms of FA reactions and managing
them with recommended medication (Sicherer & Sampson, 2006).
FA management can be a complex process that entails lifestyle
changes and poses multiple challenges for the family system.
Parents often have difficulties correctly identifying causal foods in
products (Joshi, Mofidi, & Sicherer, 2002) and may use inadequate
strategies to guide their children’s food avoidance in activities out-
side of the home (Kapoor et al., 2004). Furthermore, parents often
lack the skills to recognize symptoms of anaphylaxis, may not have
medication readily available, and lack the knowledge or confidence
to treat exposures appropriately (Arkwright & Farragher, 2006).
Although several aspects of FA management have been evaluated
among parents, no measure comprehensively evaluates the adequacy
of parents’ FA management skills across requisite behavioral do-
mains, and, to our knowledge, no measures have evaluated key di-
mensions of children’s FA self-management.
Impact of FA on Children and Parents
Parents and children with food allergies report lower QoL when
compared with controls or other illness groups such as rheumato-
logic disease and insulin-dependent diabetes mellitus (Avery, King,
Knight, & Hourihane, 2003; Primeau et al., 2000). A FA-specific
questionnaire regarding parents’ QoL, the Food Allergy Quality of
Life–Parent Burden (FAQL-PB), documented major impacts on par-
ents owing to daily demands in areas such as meal preparation and
activity planning, as well as extensive worry and anxiety about po-
tentially life-threatening reactions (Cohen, Noone, Munoz-Furlong,
& Sicherer, 2004). The parent-report Food Allergy Impact Scale
(FAIS) revealed elevated stress for parents and children, multiple ef-
fects on daily activities such as meal preparation and eating out, and
limitations on participation in activities not related to food (e.g.,
peer socialization, home schooling owing to FA) (Bollinger et al.,
2006).
Anxiety is a central feature of reduced QoL for parents and chil-
dren with food allergies (DunnGalvin, Flokstra-de Blok, Burks,
Dubois, & Hourihane, 2008). Parents’ outcome expectations for se-
rious FA reactions or death were strongly correlated with poor QoL
for parents (Cohen et al., 2004) and for children (DunnGalvin et al.,
2008). Expectations for death are surprisingly common, possibly
representing a misperception of the prevalence of FA fatalities
among children (Umasunthar et al., 2013). Reports have been mixed
regarding general anxiety levels among parents and children with
food allergies (Cummings, Knibb, Erlewyn-Lajeunesse, et al., 2010;
LeBovidge, Strauch, Kalish, & Schneider, 2009; Roy & Roberts,
2011), but also indicate that mothers’ anxiety and stress levels are
correlated with ratings of poorer QoL (Roy & Roberts, 2011) and
greater psychological distress for their children (LeBovidge et al.,
2009). For a subset of families, anxiety relating to FA can be debili-
tating for both parents and children (Manassis, 2012; Mandell,
Curtis, Gold, & Hardie, 2005; Roy & Roberts, 2011).
Few studies have addressed how families cope with the daily bur-
dens and emotions elicited by pediatric food allergies. The Food Allergy
Parent Questionnaire was developed to assess psychosocial impact and
coping strategies used by parents of children with FA (LeBovidge et al.,
2006) but psychometric and conceptual shortcomings limited its useful-
ness as a measure of parents’ coping. It is unknown how families’ profi-
ciency with FA management is related to their emotional and
573
behavioral adjustment or to their overall adaptation to children’s food
allergies. To our knowledge, no studies have assessed the adequacy of
families’ FA management skills in relation to the behavioral coping
strategies required for positive adaptation to children’s food allergies.
Family Adaptation to FA
Positive family adaptation to childhood FA requires achieving a bal-
ance between managing a potentially life-threatening condition that
requires vigilance and preparedness, and simultaneously modulating
anxiety levels and maintaining developmentally appropriate activi-
ties for children and families (Mandell et al., 2005). Poor family ad-
aptation to food allergies can include taking excessive measures that
limit appropriate developmental and social activities, or taking ap-
propriate preventive measures, but becoming overwhelmed by the
anxiety that accompanies constant vigilance (Klinnert & Robinson,
2008). Like other pediatric chronic illnesses, parents initially bear
primary responsibility for FA management, but within the family
system, each stage of children’s development is associated with
greater responsibility and more FA self-management skills, learned
Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015
through interactions and collaboration with parents as they manage
and cope with the FA over time (Kazak, 1989).
We propose that family adaptation to food allergies operates
through multiple pathways (Figure 1). Child factors such as age and
developmental level dictate the parental level of concern and in-
volvement. Caregiver characteristics, such as age, marital status, and
family socioeconomic status (SES), influence material and psycho-
logical resources available for effective illness management. Disease
factors such as duration of illness, reaction history, and comorbid al-
lergic conditions have shown mixed associations with FA anxiety
and QoL (Roy & Roberts, 2011), while number of food allergies
has consistently been associated with reduced parent QoL and nega-
tive family impact (Bollinger et al., 2006; Cohen et al., 2004). The
relationship between parent and child FA management strategies
and anxiety has rarely been investigated. We expected that variabil-
ity within and interactions among these domains contribute to fami-
lies’ levels of FA management and their maintenance of emotional
equilibrium and normative child and family activities, and that posi-
tive adaptation to FA occurs when families are able to integrate the
demands and stresses into their lives in a balanced manner, termed
balanced integration (BI; McQuaid, Walders, Kopel, Fritz, &
Klinnert, 2005).
Current Study
To date, no measure exists that targets the complex interplay of FA
management and psychosocial adjustment required for family adap-
tation to FA. The aims of this study were to develop and provide
preliminary validation for an interview-based measure of family
management of children’s food allergies that takes into account spe-
cific management strategies, including food avoidance and reaction
response readiness, balanced with appropriate vigilance without ex-
cessive anxiety or unnecessary restrictions on child and family activi-
ties. Our measurement approach, modeled on a validated
instrument for assessing families’ asthma management systems
(McQuaid et al., 2005), used a semistructured interview and perti-
nent rating scales. Although potentially time intensive, semistruc-
tured family interviews have been shown to provide unique variance
in explaining child health outcomes beyond self-report measures
(McQuaid et al., 2005); this may be owing to the greater depth of in-
formation obtained and the potential to clarify discrepant perspec-
tives among family members.
574
Figure 1. Conceptual model of family adjustment to food allergies.
Rating scales were constructed to capture a range of functioning
for each of three constructs essential within our model of family ad-
aptation to children’s food allergies: (1) multiple scales for assess-
ment of FA management behavioral domains (Sicherer & Sampson,
2006), with child-specific scales for areas within children’s realm of
responsibility (DunnGalvin, Gaffney, & Hourihane, 2009); (2)
scales for assessment of FA anxiety for individual parents and chil-
dren (Mandell et al., 2005); and (3) a global scale to assess how well
families’ were balancing FA management demands with the psycho-
logical well-being and developmental needs of their children as well
as themselves (McQuaid et al., 2005).
We developed this measure for families of children aged 6–12
years with IgE-mediated food allergies because it is during the
school-age years that children solidify self-management
skills, develop specific styles for coping with food allergies,
and accept or reject the incorporation of food allergies into their
identity (DunnGalvin et al., 2009). Such an instrument could serve
to identify families in need of clinical services owing to problems
with FA adaptation, as well as relevant targets for future
interventions.
To test the validity of the Food Allergy Management and
Adaptation Scale (FAMAS), we tested each of the three key con-
structs using multiple strategies. We hypothesized (1) the FA man-
agement component, composed of eight subscales, would (1a)
demonstrate adequate internal consistency across the eight sub-
scales; (1b) correlate with independent ratings of family FA manage-
ment made by physicians who specialize in clinical care for children
with FA; and (1c) be associated with an observational assessment of
parents’ injectable epinephrine proficiency; (2) FA-specific anxiety
would (2a) be moderately correlated with general anxiety measures
for both parents and children; and (2b) mothers’ FA Anxiety would
be correlated with outcome expectations for death; and (3) BI would
be significantly correlated with (3a) lower FA family impact mea-
sured by the FAIS and (3b) better parent FA QoL, measured by the
FAQL-PB.
Klinnert et al.
Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015
Methods
The FAMAS development and validation studies were conducted at
a tertiary care center in a metropolitan setting and were approved
by the institutional review board. Parental informed consent and
child assent were obtained for both the pilot and the validation
phases of the study.
FAMAS Interview and Scale Development
Development of the FAMAS interview and rating scales was based
on empirical reports regarding children and families’ experiences
with FA, consultation with board-certified allergists regarding prin-
ciples of FA management, pilot studies of parent FA QoL and out-
come expectations (Klinnert & Robinson, 2008), and qualitative
data obtained from focus groups (unpublished). The interview and
rating scales were developed with reference to the constructs identi-
fied a priori as fundamental to FA adaptation. For each construct,
we generated open-ended stem questions with follow-up probes de-
signed to elicit meaningful behaviors and vignettes from children
and parents regarding FA management (e.g., avoiding foods), sub-
jective experience (e.g., emotional response to food allergies), objec-
tive experience (e.g., prior use of injectable epinephrine), and
psychosocial adjustment (e.g., impact on family social activities).
Based on clinical recommendations and effective behavioral strate-
gies for FA management (Boyce et al., 2010), an initial series of 9-
point rating scales was developed for key constructs and behavioral
domains, with the mid-point score (5) representing “adequate” func-
tioning for respective domains. For each scale, core features were
identified to consider when rating, and descriptive anchor points
were developed.
The pilot phase involved video-recorded interviews with 27 chil-
dren with FA (M age ¼ 8.4, SD ¼ 1.8, range: 6–12 years) and their
caregivers, who represented various levels of FA management and
adaptation. Following each interview, each team member indepen-
dently reviewed video recordings with attention to interview
Development of the FAMAS 575

Table I. Content and Scoring of the Food Allergy Management and Adaptation Scale (FAMAS)

FAMAS subscales Description/specifications Low, middle, and high anchor points

FA management
composite
FA knowledge Knowledge of basic mechanisms of FA, including relevant organ systems, 1. Poor understanding
modes of exposure, risks for reaction or death, relationship with 5. Basic elements, but one significant gap
asthma, natural history. 9. Excellent grasp of FA
Symptom Knowledge of reaction symptoms, own child’s symptom pattern, grada- 1. Limited awareness
assessment tion of symptom severity from mild to anaphylaxis; specific indications 5. Knows primary symptoms of FA reaction
of anaphylaxis 9. Comprehensive understanding of FA
reactions
Family response Family members’ preparation for managing reactions, including response 1. Unprepared for reaction, minimization
readiness appropriate to symptoms; quality and availability of action plan for fu- 5. Plan less than perfect, but could save child
ture reactions. 9. Systematic, coherent plan
Child response Child’s preparation for managing reactions, including response appropri- 1. Denies or hides symptoms
readiness ate to symptoms (e.g. notifying adult, cooperating with treatment); 5. Acknowledges symptoms/sufficient plan
quality and availability of action plan; developmentally appropriate. 9. Alert to symptoms, coherent/developmen-
tally appropriate plan
Family food Strategies for food avoidance at and away from home; awareness of poten- 1. Limited/hopeless regarding food
avoidance tial for accidental exposure; knowledge and use of food labels; aware- avoidance

Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015

ness of cross-contamination. 5. Adequate understanding, some
inconsistencies
9. Coherent strategy across settings
Child food Developmentally appropriate strategies for food avoidance; awareness of 1. No strategies/resistant to food avoidance
avoidance potential accidental exposure; knowledge and use of food labels; aware- 5. Good understandings of avoidance basics
ness of cross-contamination. 9. Advocates for self in multiple settings
Medication Have current, filled prescriptions for injectable epinephrine and antihista- 1. Not readily available
availability mines; medications stored appropriately, available at all times, and in 5. Generally on hand but have not practiced
all environments; availability of asthma medications if needed. 9. Always at hand and have practiced
Alternate All alternate caregivers are informed of child’s FA, food avoidance strate- 1. Do not inform or prepare
caregivers gies, knowledge of symptoms and action plan, medication availability; 5. May be vague across alternate caregivers
preparedness to respond to symptoms, administer epinephrine. 9. Written and verbal reaction response plan
Parent anxiety Anxiety levels self-reported by parent; anxiety revealed by responses re- 1. No evidence that FA produces anxiety
garding specific management strategies and experiences with reactions 5. Moderate anxiety about FA/reactions
and by FA outcome expectations. 9. Clinically significant anxiety
Child anxiety Child’s self-reported anxiety level; anxiety revealed by responses regarding 1. Expresses no anxiety due to FA
specific management strategies and experiences with reactions and by 5. Moderate anxiety about FA/reactions
FA outcome expectations. 9. Extreme avoidance/fear of dying
Balanced Balance of attention to FA management and other developmental and fam- 1. Imbalanced/child at risk/high FA burden
integration ily issues (e.g., emotional adjustment, participation in extracurricular 5. Adequate management/less burden
and family activities). 9. Balance between management/psychoso-
cial adjustment

Note. FA ¼ food allergy. Each FAMAS subscale uses a 9-point scale, with higher scores indicating high (e.g., anxiety) or better (e.g., FA management scales);
scores below the mid-point of 5 indicate inadequate FA management. Composites are a mean of the subsequently listed subscales.

structure and flow, and used preliminary rating scales to make initial
ratings. Team meetings were then used to review team members’ rat-
ings to (1) achieve consensus ratings consistent with the purpose of
the scales, (2) use rating disagreements to identify unclear
scale items or interview questions, (3) make indicated refinements to
interview questions and follow-up probes and to rating scales.
Finally, we discussed changes to improve the interview, such as
rewording of questions, ordering of questions, and overall flow.
The initial pilot phase ended when ratings were consistent and no
further major refinements to the interview or rating scales were nec-
essary to capture relevant content (Supplementary for FAMAS
Interview).
An abbreviated version of the final FAMAS 9-point rating scales
is presented in Table I. Adequacy of FA management is assessed
with eight dimensions that can be combined by taking the mean of
the eight ratings to create an FA Management Composite
(FAMComposite). Parent and Child FA Anxiety are assessed and
rated for individual parents and children. Children’s responses are
rated separately for food avoidance, reaction response readiness,
and FA-specific anxiety, with each child scale incorporating expecta-
tions consistent with child’s developmental level. BI represents a
global judgment of how well the family has integrated requisite FA
management behaviors and skills with other aspects of child and
family life, avoiding unwarranted restrictions on family members’
behavior, and maintaining normative age- and role-appropriate
functioning for family members.
Participants for FAMAS Validation Study
A second, new sample of families was recruited via physician refer-
rals from the hospital pediatric outpatient clinic, local private al-
lergy practices, and mailings to members of a local FA support
group. Eligibility for the study required that families have a child
6–12 years old with physician-documented FA, including a verified
history of food reaction and positive FA testing within 18 months
before the study visit. Children with unconfirmed FA,
576
non-English-speaking families, and children with severe develop-
mental delay were excluded.
Study Procedures
After parental informed consent and child assent were obtained, the
parent(s) and child participated in an hour-long, video recorded in-
terview conducted by one of two clinical psychologists. At the end
of the interview, the child was separated from the parent(s) for ques-
tionnaire completion, supervised by research assistants (RAs).
Children aged 8–12 completed questionnaires independently, while
for 6- and 7-year-olds, RAs read the questions for the State-Trait
Anxiety Inventory for Children (STAI-C) and Multidimensional
Anxiety Scale for Children (MASC) questions and recorded the chil-
dren’s responses.
With the child absent, parents were asked additional questions
privately that might have been uncomfortable in the presence of the
child (e.g., “on a scale from 1 to 5 where 1 is ‘don’t worry at all’ and
5 is ‘get really scared,’ how worried or nervous do you get when
your child is having FA symptoms?”) followed by open-ended ques-
tions to assess the parent’s emotions in response to FA reactions. An
RA then videotaped the parent demonstrating the use of a trainer
version of an auto-injectable epinephrine device (Epi-Demo proce-
dure). Parents were allowed to choose among several devices to en-
sure they were using a familiar one. After their demonstration,
parents were asked to describe indications for administering epi-
nephrine to their child. Finally, parents completed questionnaires.
Following study visits, all video-recorded interviews were viewed
and rated independently using the scale guidelines by research team
members. Raters were three pediatric psychologists (two of whom
also conducted interviews) and two RAs with training in FA man-
agement and behavioral health. Ratings were recorded for reliability
calculation before discussion of rater disagreements, and final con-
sensus scores were generated.
Measures
Physician Global Ratings of Family Food Avoidance and Reaction
Response Readiness
Two board certified allergists using clinical judgment, without re-
view of the FAMAS rating scales, independently reviewed video re-
cordings of interviews edited to include only information relevant to
FA management. Physicians used 5-point scales to make global rat-
ings of family food avoidance and family reaction response readiness
(Supplementary for physician rating guidelines). For reliability as-
sessment, both physicians rated the edited portion of 77% (n ¼ 46)
of the interview recordings. Interrater reliability, computed as intra-
class correlations (ICC), was .84 for reaction response readiness and
.76 for family food avoidance.
EPI-Demo
The videotaped segments documenting the caregiver’s response to
the epinephrine task were rated by two study personnel trained to
reliably score whether the caregiver (1) knew the correct site to in-
ject epinephrine, (2) removed the safety cap, (3) applied enough
pressure to trigger the device, (4) left the needle in the skin for rec-
ommended time after the device was triggered, and (5) listed breath-
ing problems or faintness as indications for use (Arkwright &
Farragher, 2006). Analyses for the present study used the sum of
correctly performed items, with higher scores corresponding to
more appropriate device use, as well as a pass/fail score, with a pass
based on correct demonstration of all five components. Interrater re-
liability was computed for both scores: sum correct (ICC ¼ .92) and
pass/fail (ICC ¼ .93).
Klinnert et al.
State-Trait Anxiety Inventory
The State-Trait Anxiety Inventory (STAI) is a 40-item instrument
that measures an individual’s stable trait and transient state anxiety.
The STAI provided self-report data on general anxiety levels.
Extensive validity testing suggests that the STAI has good concur-
rent, convergent, divergent, and construct validity (Speilberger,
1970; Spielberger, Gorsuch, Lushene, Vagg, & Jacobs, 1973).
STAI State and Trait t scores were used in this study. The STAI dem-
onstrated excellent internal consistency for mothers (n ¼ 57,
Cronbach’s a ¼ .94 and .91), and for fathers (n ¼ 14, a ¼ .83
and .90) for the State and Trait subscales, respectively.
State-Trait Anxiety Inventory for Children
The STAI-C is a 40-item questionnaire for which children respond
to statements that begin with “I feel . . . ” by choosing one of three
answers reflecting varying levels of comfort (e.g., “very calm,”
“calm,” “not calm”) (Spielberger et al., 1973). The STAI-C was
used to provide data on the children’s general anxiety. STAI-C State
and Trait t scores were used in this study. Adequate reliability and
Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015
validity have been demonstrated (Spielberger et al., 1973). The
STAI-C has been used with first and second graders by having it
read to them and their response recorded (Papay & Hedl, 1978), a
procedure that we followed. Internal consistency in the current
study was good (a ¼ .86 and .83 for State and Trait subscales,
respectively).
Multidimensional Anxiety Scale for Children
The MASC is a 39-item self-report clinical measure designed to as-
sess a broad range of anxiety symptoms for children aged 8–18
years. Children are asked to rate items using a 4-point scale ranging
from “never true” to “often true” (March, 1997). Greater MASC
scores indicate higher levels of anxiety. The MASC has demon-
strated acceptable psychometric properties (March, 1997). MASC
Total Anxiety t scores were used in the current study. For the cur-
rent study, internal consistency was examined separately for the
younger children and those 8 years. Cronbach’s a for the younger
children was .83, and .85 for the 8–12-year-olds. For the entire sam-
ple, a ¼ .85.
Food Allergy Independent Measure
The Food Allergy Independent Measure (FAIM) consists of four
questions rated on 7-point Likert scales, and assesses the parent’s ex-
pectation of outcome for the child with FA (DunnGalvin et al.,
2008; van der Velde et al., 2010). Parents rate for their child the
chance of: (1) accidental exposure, (2) severe reaction when acciden-
tally exposed, (3) dying when accidentally exposed, and (4) respond-
ing effectively when accidentally exposed. For the current study,
ratings for question 3 concerning parent perception regarding
chance of child’s death owing to FA was included as a concurrent
measure of parent FA specific anxiety.
Food Allergy Impact Scale
The FAIS is a 32-item questionnaire with eight subscales that evalu-
ate the caregiver’s perception of the impact of the child’s FA on as-
pects of daily family activities (e.g., meal preparation, family social
activities); subscale scores were related to number of FA per child
(Bollinger et al., 2006). For each item, caregivers rate the impact of
the child’s FA using 7-point Likert scales, indicate if FA prevents
child or family engagement in the queried activity (scored as 8), or
mark that the item does not apply to their child (e.g., for FA impact
on daycare, child does not attend daycare; scored as missing). FAIS
Development of the FAMAS 577

subscale scores were calculated by taking the mean of item ratings. Table II. Participant and Family Characteristics
Responses were required for at least half of constituent subscale
Variable Mean 6 SD or N (%)
items; otherwise subscale scores were considered missing. Internal
consistency for the FAIS was adequate for this sample, with seven of Child age 8.7 6 1.8
eight subscales exceeding Cronbach’s a of .60 for mothers Child gender
(a ¼ .54–.96; caregiver-supervised social activities, a ¼ .54), and Male 39 (65)
seven of eight subscales exceeding a of .85 for fathers (a ¼ .49–.99; Female 21 (35)
family relations, a ¼ .49). Child race
Asian 1 (2)
Black 2 (3)
Food Allergy Quality of Life-Parent Burden Questionnaire White 51 (85)
The FAQL-PB measures the impact of FA on health-related QoL of More than one race 6 (10)
caregivers (Cohen et al., 2004). Using a 7-point scale, parents are Child ethnicitya
asked to indicate how their child’s FA has limited or troubled them Hispanic or Latino 8 (14)
during activities of daily living (e.g., eating outside the home, send- Not Hispanic or Latino 50 (86)
Child’s age at diagnosis (years) 2.3 6 2.6
ing child to camp). Higher scores indicate increasing caregiver bur-
Number of food allergies 3.0 6 1.8
den. The FAQL-PB has demonstrated excellent internal consistency
Number of families reporting anaphylaxis 33 (55)
and test–retest reliability (Cohen et al., 2004). The FAQL-PB total
Number of anaphylactic reactions 1.7 6 1
score was used for the current study, and demonstrated excellent in- Child diagnosed with other allergic disease
ternal consistency for mothers, a ¼ .93 (n ¼ 57), and for fathers, Asthma 35 (58.3)

Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015

a ¼ .95 (n ¼ 12). Atopic dermatitis 27 (45)
Caregiver(s) participating in study
Mother only 46 (77)
Overview of Statistical Analyses
Father only 3 (5)
Interrater reliability was assessed with two-way, single-measures Both parents 11 (18)
ICC based on consistency in response for Likert-scale items, and Mother’s highest level of education
based on absolute agreement for dichotomous items. For FAMAS Less than college degree 5 (8)
subscales, pairwise ICCs were calculated for each rater compared College or graduate degree 55 (92)
with consensus scores; the mean and range of raters’ ICCs were Father’s highest level of education
calculated for each scale. Internal consistency was determined us- Less than college degree 11 (18)
ing Cronbach’s alpha on standardized variables. FAMAS validity College or graduate degree 49 (82)
testing included a comparison of FAMComposite scores for par- Parents’ marital status
Married 55 (92)
ents who passed versus failed the Epi-Demo, using an independent
Not married 5 (8)
samples t test with unequal variances, and Cohen’s d was calcu-
lated as a measure of effect size. Spearman correlation coefficients Note. aEthnicity data missing for two subjects.
were initially used to assess relationships between FAMAS scales
and validity measures with continuous distributions. Descriptive
analyses revealed correlations among number of FAs, age, and Validity of the FAMAS
scale scores. Multiple linear regressions were used to regress the Our first hypothesis regarding validity for the FAMComposite was
FAMAS subscales on validity measures, adjusting for child age and supported. The FAMComposite had excellent internal consistency
total number of FA. The multiple scale scores of the FAIS, which (a ¼ .91). FAMComposite scores differed for families who passed
were intercorrelated, were entered together in a model after multi- the Epi-Demo compared with those who failed, t(54) ¼ 3.73,
collinearity was examined and found not to be a limiting factor. p ¼ .0005 (t test based on unequal variances; Pass: M ¼ 7.31,
Analyses were performed using JMP 10.00, SPSS version 22 and SD ¼ 0.59; Fail: M ¼ 6.34, SD ¼ 1.33; Cohen’s d ¼ 1.13). Regression
SAS version 9.3. analyses showed that physician ratings of family Food Avoidance
and of reaction Response Readiness as well as Epi-Demo scores
were significantly related to FAMComposite after controlling for
Results child age and number of FAs (Table IV).
The validation sample included 60 families with physician- FAMAS ratings of Child FA Anxiety were significantly associ-
documented FA (Table II). Twenty percent of children had one FA, ated with STAI-C State and Trait scores and with MASC total anxi-
27% had two, and the remainder had three or more documented ety t scores (Table IV); this supported Hypothesis 2, that child FA
FAs. Most children (77%) were accompanied by mothers, 18% by anxiety ratings were correlated with general anxiety scores. For
both parents, and three children (5%) by their fathers. All mothers mothers, Hypothesis 2 was not supported, as mother FA anxiety rat-
present for the interview identified themselves as the primary FA ings were not significantly associated with STAI scores. However,
caregiver. Validity was examined for the 57 families with mothers mother FA anxiety was strongly associated with the FAIM query re-
present. garding expectation of death as FA outcome (Table IV).
Mean FAMAS subscale scores were generally high relative to the Finally, higher BI was significantly associated with better mater-
conceptually determined a priori scale midpoint (5 on a 9-point nal FA QOL, measured with the FAQL-PB. Spearman’s raw correla-
scale), particularly for the subscales comprising the FAMComposite tions revealed relationships between higher BI and lower scores on a
(Table III). The mean score for the FAMComposite was 6.6 number of FAIS scales (Table IV). However, a regression model that
(SD ¼ 1.3). Mean scores for the anxiety subscales and BI fell be- included all FAIS scales showed that caregiver-supervised child so-
tween scale points 5 and 6. Interrater reliability was excellent for cial activities, family relations, and meal preparation were the signif-
FAMAS subscales (ICC range: .91–.98; Table III). icant predictors for BI scores.
578 Klinnert et al.

Table III. Descriptive Statistics and Interrater Reliability for Food Allergy Management and Adaptation Scale (FAMAS) Subscale Scores

FAMAS subscales n Interrater reliabilitya Scores: Entire sample (n ¼ 60) Scores: Validation sample (n ¼ 57)

Mean Range Mean (SD) Median (Q1, Q3) Mean (SD) Median (Q1, Q3)

FA knowledge 60 0.98 0.97–0.99 6.9 (1.3) 7.0 (6.0, 8.0) 6.9 (1.3) 7.0 (6.0, 8.0)
Symptom assessment 60 0.97 0.95–0.99 6.7 (1.1) 7.0 (6.0, 7.0) 6.7 (1.1) 7.0 (6.0, 7.0)
Family response readiness 60 0.95 0.91–0.99 6.1 (1.7) 6.0 (5.0, 7.0) 6.2 (1.6) 6.0 (5.0, 7.0)
Child response readiness 60 0.95 0.89–0.98 5.9 (1.7) 6.0 (5.0, 7.0) 6.0 (1.6) 6.0 (5.0, 7.0)
Family food avoidance 60 0.98 0.96–0.99 7.0 (1.4) 7.0 (6.5, 8.0) 7.1 (1.4) 8.0 (7.0, 8.0)
Child food avoidance 60 0.98 0.96–0.99 7.4 (1.6) 8.0 (7.0, 8.5) 7.4 (1.5) 8.0 (7.0, 9.0)
Medication availability 60 0.98 0.97–0.99 6.5 (2.1) 7.0 (5.5, 8.0) 6.7 (2.1) 7.0 (6.0, 8.0)
Alternate caregivers 60 0.97 0.92–0.99 6.4 (1.9) 7.0 (5.0, 8.0) 6.5 (1.9) 7.0 (5.0, 8.0)
FA management composite 6.6 (1.3) 6.9 (5.9, 7.6) 6.7 (1.2) 6.9 (6.1, 7.6)
Mother FA anxiety 57 0.97 0.95–0.99 5.7 (1.9) 6.0 (4.0, 7.0) 5.7 (1.9) 6.0 (4.0, 7.0)
Father FA anxietyb 14 0.99 0.98–0.99 4.0 (1.4) 3.5 (3.0, 5.0)
Child FA anxiety 60 0.97 0.94–0.99 5.6 (1.6) 5.0 (4.3, 7.0) 5.6 (1.7) 5.0 (5.0, 7.0)
Balanced integration 60 0.94 0.88–0.98 5.5 (1.8) 5.0 (5.0, 7.0) 5.6 (1.8) 5.0 (5.0, 7.0)

Note. FA ¼ food allergy.

a
Mean and range of pairwise intraclass correlations calculated for scores by each of five raters compared with consensus scores; number of raters varied for

Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015

subscales.
b
Fathers’ FA anxiety scores not included in the validation sample owing to small sample size.

Table IV. FAMAS Concurrent Validity

Construct Validity measure N qa bb p

FA management composite Physician global rating—food avoidance 57 0.75 1.407 <.001

Physician global rating—response readiness 57 0.69 1.039 <.001
EPI-demo: sum of passed items 57 0.43 0.565 <.001
Food allergy anxiety
Child FA anxiety STAI-C Statec 55 0.39 0.07 <.001
STAI-C Trait 56 0.45 0.07 <.001
MASC total t scored 56 0.3 0.065 .01
Mother FA anxiety STAI State 57 0.11 0.018 .56
STAI Trait 57 0.15 0.026 .44
FAIMe (chance death) 56 0.52 0.689 <.001
Balanced integration FAQL–PB (mother) 57 0.35 0.042 .01
FAIS (mother)f
Meal preparation 52 0.34 0.279 .04
Family social activities 52 0.15 0.505 .06
Caregiver-supervised child social activity 52 0.31 0.902 <.001
Family relations 52 0.3 0.696 .04
Stress and free time 52 0.27 0.377 .21
School or structured activities 52 0.11 0.174 .42
Autonomous social activities 52 0.15 0.332 .11
Employment and finances 52 0.33 0.098 .61

Note. FA ¼ food allergy; STAI-C ¼ State-Trait Anxiety Inventory for Children; MASC ¼ Multidimensional Anxiety Scale for Children; STAI ¼ State-Trait
Anxiety Inventory; FAIM ¼ Food Allergy Independent Measure; FAQL-PB ¼ Food Allergy Quality of Life–Parent Burden; FAIS ¼ Food Allergy Impact Scale.
a
Spearman’s q, unadjusted.
b
Linear regression models adjusted for child’s age and number of food allergies. Outcomes are FAMAS constructs; predictors are validity measures. b is regres-
sion coefficient, p is significance value for regression coefficient.
c
Data were incomplete for two children’s STAI-C State and one child’s STAI-C Trait.
d
One child did not complete MASC.
e
One mother did not complete FAIM.
f
FAIS subscale scores entered together in regression equation; subjects’ scores on FAIS excluded when unscorable because more than half of subscale items had
missing data owing to item not applying for family, resulting in n ¼ 52.

and social activities, as well as promoting emotional equilibrium for

Discussion
Food allergies are increasingly prevalent (Gupta et al., 2011) and
their management is an additional burden for affected families
(Cummings, Knibb, King, et al., 2010). Balanced family adaptation
to children’s food allergies requires taking adequate preventive and
management measures while promoting appropriate developmental
parents and children. Although instruments exist for assessing
FA-related QoL, there has been no means of conceptualizing or
assessing families’ overall management and overall adaptation to
children’s food allergies. This article describes the FAMAS, an inter-
view-based assessment of families’ adaptation to children’s food al-
lergies. By using expert input and an array of self-report measures,
Development of the FAMAS
physician ratings of families’ FA management, and demonstration of
behavior relevant for FA management, we have provided strong sup-
port for the reliability and validity of the three constructs constitut-
ing this instrument: FA management, emotional adjustment, and BI
of FA into family life.
Validity of the FAMComposite of multiple behavioral domains
requisite for adequate FA management was strongly supported. This
indicates that trained interviewers without medical backgrounds,
such as behavioral health specialists or RAs, can provide a compre-
hensive assessment of families’ strategies for preventing food expo-
sure as well as their preparedness for FA reactions. The composite
score was strongly related to preparation for using auto-injectable
epinephrine when reactions occur, suggesting interview ratings cap-
tured behavioral skills relevant to reaction management such as
medication administration.
Perhaps driven by clinical impressions of FA patients and care-
givers, some existing research has focused on the extent of general
anxiety in this population (Herbert & Dahlquist, 2008; LeBovidge
et al., 2009). In this study, we found that FA anxiety observed in
children during the interview was related to self-report of general
anxiety. However, general anxiety levels were not associated with
interview ratings of FA anxiety among mothers of children with FA,
suggesting that mothers’ anxiety may be unique to FA, rather than
representing a general tendency toward anxiety. Correlations be-
tween interview ratings of FA anxiety and parental assessment of
the chance that their child would die from a FA reaction also sup-
port this perspective. Given that mortality rates for pediatric FA are
very low (Umasunthar et al., 2013), parents’ very high anxiety about
their child’s death may be an indicator of difficulty in adjusting to
children’s FA.
Lastly, interview ratings of high BI, or a family’s ability to inte-
grate the tasks of FA management into their overall routines and
maintain appropriate developmental expectations and activities, were
associated with maternal ratings of lower FA-related parent burden.
Higher BI ratings were also related to less impairment in family rela-
tions owing to FA, and on children’s social activities, such as playing
with friends. Higher BI ratings were marginally related to fewer re-
strictions on families’ social activities, such as family outings or activi-
ties with relatives. BI ratings were not associated with school or
structured activities, or with restrictions on autonomous social activi-
ties such as sleepovers or camp. This lack of association may indicate
that the BI scale assesses processes at the family system level as op-
posed to child level functioning at school and with peers.
The current study has a number of limitations. Although we
implemented a careful two-phase validation process, the sample
size of our overall validation sample was small and was limited in
terms of ethnic diversity and SES, a common limitation in studies
of pediatric FA (Cummings, Knibb, Erlewyn-Lajeunesse, et al.,
2010). Thus, the preponderance of high FA management scores in
this study may be owing to a select sample, rather than represent-
ing average families’ experience with FA management. Despite ef-
forts to involve fathers, participating parents were primarily the
children’s mothers. Although this is typical in many studies of
childhood chronic illness (Phares, Lopez, Fields, Kamboukos, &
Duhig, 2005), inclusion of fathers in future work may provide ad-
ditional perspectives regarding the distribution of FA management
tasks within the family. Future studies might also include the per-
spectives of alternate FA caregivers, such as day care providers and
teachers. While we provided substantial support for the FAMAS’
concurrent validity, our study did not include prospective data for
assessment of predictive validity, such as occurrence of reactions
over longer time periods.
579
Further studies are needed to test the validity of the FAMAS. We
have proposed that the validity of the FAMAS instrument would be
supported by the identification of subgroups of families based on
varying subscale scores, indicating different adaptation patterns,
and analyses are underway to test this hypothesis. Future studies are
needed to test the validity of the FAMAS among a more ethnically
and socioeconomically diverse sample to address the generalizability
of the conceptualization and the instrument, and also to determine
the adequacy of FA management and the frequency of debilitating
FA anxiety in the broader population. The instrument may be useful
in clinical trials of FA medical and behavioral interventions, for the
evaluation of families’ FA adaptation at baseline and follow-up.
Although the interview format may be labor intensive for standard
clinical practice, the FAMAS might be a useful diagnostic instrument
before initiating treatment. Future efforts could include the develop-
ment of a briefer version for routine clinical use, or a standard set of
questions to identify families at high-risk of poor management and
negative outcomes to enhance care for families of children with FA.
Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015
Supplementary Data
Supplementary data can be found at: http://www.jpepsy.oxfordjournals.org/.
Funding
This work was supported by a grant from the Eunice Shriver National
Institute of Child Health and Human Development Grant number R21
HD059043 to Mary D. Klinnert (Principal Investigator) and by the National
Institutes of Health/National Center for Advancing Translational Sciences
Colorado, CTSA Grant Number UL1 RR025780. Contents are the authors’
sole responsibility and do not necessarily represent official NIH views.
Conflicts of interest: Dr. Atkins discloses work with DBV Technologies—
MILES: Participation on Drug Safety Monitoring Board; Regeneron
Pharmaceuticals, Inc. Dr. Fleischer discloses consultancy with LabCorp;
speakers’ bureau with Nestle Nutrition Institute.
References
Arkwright, P. D., & Farragher, A. J. (2006). Factors determining the ability of
parents to effectively administer intramuscular adrenaline to food allergic
children. Pediatric Allergy and Immunology, 17, 227–229. doi: 10.1111/
j.1399-3038.2006.00392.x
Avery, N. J., King, R. M., Knight, S., & Hourihane, J. O’B. (2003).
Assessment of quality of life in children with peanut allergy. Pediatric
Allergy and Immunology, 14, 378–382. doi: http://dx.doi.org/10.1016/j.
anai.2010.08.003
Bollinger, M. E., Dahlquist, L. M., Mudd, K., Sonntag, C., Dillinger, L., &
McKenna, K. (2006). The impact of food allergy on the daily activities of
children and their families. Annals of Allergy, Asthma and Immunology, 96,
415–421. doi: 10.1016/S1081-1206(10)60903-9
Boyce, J. A., & NIAID-Sponsored Expert Panel. (2010). Guidelines for the di-
agnosis and management of food allergy in the United States: Report of the
NIAID-sponsored expert panel. Journal of Allergy and Clinical
Immunology, 126, S1–S58. doi: 10.1016/j.jaci. 2010.10.007
Cohen, B. L., Noone, S., Munoz-Furlong, A., & Sicherer, S. H. (2004).
Development of a questionnaire to measure quality of life in families with a
child with food allergy. Journal of Allergy and Clinical Immunology, 114,
1159–1163. doi: 10.1016/j.anai.2010.09.006
Cummings, A. J., Knibb, R. C., Erlewyn-Lajeunesse, M., King, R. M.,
Roberts, G., & Lucas, J. S. (2010). Management of nut allergy influences
quality of life and anxiety in children and their mothers. Pediatric Allergy
and Immunology, 21, 586–594. doi: 10.1111/j.1399-3038.2009.00975.x
Cummings, A. J., Knibb, R. C., King, R. M., & Lucas, J. S. (2010). The psy-
chosocial impact of food allergy and food hypersensitivity in children,
580
adolescents and their families: A review. Allergy, 65, 933–945. doi:
10.1111/j.1398-9995.2010.02342.x
DunnGalvin, A., Flokstra-de Blok, B. M. J., Burks, A. W., Dubois, A. E. J., &
Hourihane, J. O’B. (2008). Food allergy QoL questionnaire for children aged
0-12 years: Content, construct, and cross-cultural validity. Clinical and
Experimental Allergy, 38, 977–986. doi: 10.1111/j.1365-2222.2008.02978.x
DunnGalvin, A., Gaffney, A., & Hourihane, J. O’B. (2009). Developmental
pathways in food allergy: A new theoretical framework. Allergy, 64,
560–568. doi: 10.1111/j.1398-9995.2008.01862.x
Gupta, R. S., Springston, E. E., Warrier, M. R., Smith, B., Kumar, R.,
Pongracic, J., & Holl, J. L. (2011). The prevalence, severity, and distribution
of childhood food allergy in the United States. Pediatrics, 128, e9–e17. doi:
10.1542/peds.2011-0204
Herbert, L. J., & Dahlquist, L. M. (2008). Perceived history of anaphylaxis
and parental overprotection, autonomy, anxiety, and depression in food al-
lergic young adults. Journal of Clinical Psychology in Medical Settings, 15,
261–269. doi: 10.1016/j.anai.2010.08.003
Joshi, P., Mofidi, S., & Sicherer, S. H. (2002). Interpretation of commercial food
ingredient labels by parents of food-allergic children. Journal of Allergy and
Clinical Immunology, 107, 1019–1021. doi: 10.1067/mai.2002.123305
Kapoor, S., Roberts, G., Bynoe, Y., Gaughan, M., Habibi, P., & Lack, G.
(2004). Influence of a multidisciplinary paediatric allergy clinic on parental
knowledge and rate of subsequent allergic reactions. Allergy, 59, 185–191.
doi: 10.1046/j.1398-9995.2003.00365.x
Kazak, A. E. (1989). Families of chronically ill children: A systems and social-
ecological model of adaptation and challenge. Journal of Consulting and
Clinical Psychology, 57, 25–30.
Klinnert, M. D., & Robinson, J. L. (2008). Addressing the psychological needs
of families of food-allergic children. Current Allergy and Asthma Reports,
8, 195–200. doi:10.1037/cpp 0000053
LeBovidge, J. S., Stone, K. D., Twarog, F. J., Raiselis, S., Kalish, L., Bailey, E.,
& Schndier, L. (2006). Development of a preliminary questionnaire to assess
parental response to children’s food allergies. Annals of Allergy, Asthma and
Immunology, 96, 472–477. doi:10.1016/S1081-1206(10)60916-7
LeBovidge, J. S., Strauch, H., Kalish, L. A., & Schneider, L. C. (2009).
Assessment of psychological distress among children and adolescents with
food allergy. Journal of Allergy and Clinical Immunology, 124, 1282–1288.
doi: 10.1016/j.jaci.2009.08.045
Manassis, K. (2012). Managing anaphylaxis related to anxiety in childhood: A
systematic review. Journal of Allergy, 2012, article ID 316296, 7 pages;
doi:10.1155/2012/316296
Klinnert et al.
Mandell, D., Curtis, R., Gold, M., & Hardie, S. (2005). Anaphylaxis: How do
you live with it? Health & Social Work, 30, 325–335. doi: 10.1093/hsw/
30.4.325
March, J. S. (1997). Multidimensional anxiety scale for children (MASC).
North Tonawanda (NY): MHS, Inc.
McQuaid, E. L., Walders, N., Kopel, S. J., Fritz, G. K., & Klinnert, M. D.
(2005). Pediatric asthma management in the family context: The family
asthma management system scale. Journal of Pediatric Psychology, 30,
492–502.
Papay, J. P., & Hedl, J. J., Jr. (1978). Pychometric characteristics and norms
for disadvantaged third and fourth grade children on the State-Trait Anxiety
Inventory for Children. Journal of Abnormal Psychology, 6, 115–120. doi:
http://dx.doi.org/10.1007/bf00915787
Phares, V., Lopez, E., Fields, S., Kamboukos, D., & Duhig, A. M. (2005).
&Are fathers involved in pediatric psychology research and treatment?
Journal of Pediatric Psychology, 30, 631–643. doi: 10.1093/jpepsy/jsi050
Primeau, M., Kagan, R., Jospeh, L., Lim, H., Dufresne, C., Duffy, C., &
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. doi: http://dx.doi.org/
10.1046/j.1365-2222.2000.00889.x
Downloaded from http://jpepsy.oxfordjournals.org/ at :: on September 16, 2015
Roy, K. M., & Roberts, M. C. (2011). Peanut allergy in children:
Relationships to health-related quality of life, anxiety, and parental stress.
Clinical Pediatrics, 50, 1045–1051. doi: 10.1177/0009922811412584
Sicherer, S. H., & Sampson, H. A. (2006). Food allergy. Journal of
Allergy and Clinical Immunology, 117, S470–S475. doi: 10.1016/
j.jaci.2005.05.048
Speilberger, C. D. (1970). Manual for State-Trait Anxiety Inventory. Palo
Alto, CA: Consulting Psychologists Press.
Spielberger, C. D., Gorsuch, R. L., Lushene, P. R., Vagg, P. R., & Jacobs, G.
A. (1973). State-Trait anxiety inventory for children: Manual and sampler
set. Mind Garden, Inc. www.mindgarden.com
Umasunthar, T., Leonardi-Bee, J., Hodes, J., Turner, P. J., Gore, C., Habibi,
P., . . . Boyle, R. J. (2013). Incidence of fatal food anaphylaxis in people
with food allergy: A systematic review and meta-analysis. Clinical and
Experimental Allergy, 43, 1333–1341. doi: 10.1111/cea.12211
van der Velde, J. L., Flokstra-de Blok, B. M. J., Vlieg-Boerstra, B. J., Oude
Elberink, G., DunnGalvin, A., Hourihane, J. B., & Dubois, A. E. J. (2010).
Development validity and reliability of food allergy independent
measure (FAIM). Allergy, 65, 630–635. doi: 10.1111/j.1398-
9995.2009.02216.x
Copyright of Journal of Pediatric Psychology is the property of Oxford University Press /
USA and its content may not be copied or emailed to multiple sites or posted to a listserv
without the copyright holder's express written permission. However, users may print,
download, or email articles for individual use.