Research Submissions

953

Quality of Life, Coping Strategies, and Family Routines in Children with Headache

Mara Frare, PhD; Giovanna Axia, PhD; Pier Antonio Battistella, MD

Objective.—To identify the relationship between headache severity, child coping, and quality of life (QoL) inthe context of everyday family life.

Background.—In the pediatric headache research only 3 studies have examined children’s coping strategiesand only 4 studies considered QoL.

Methods.—A sample of 48 Italian families with children seeking treatment for primary headaches was inter-viewed using an adaptation of the Ecocultural Family Interview (EFI). The EFI is a parent interview that exploresthe daily routines of family life in which the child and parent participate and the main concerns regarding how thatroutine is organized.

Results.—As expected the Lisrel analyses consistently showed that QoL is affected by a child’s coping abili-ties in a causal direction. Headache frequency and duration have a significant impact on a child’s QoL. The familydaily routine influences significantly both the child’s coping ability and QoL. Surprisingly enough, children’s cop-ing strategies are not related to headache severity.

Conclusions.—More research is needed on the causal factors influencing child’s ability to cope with pain, andin particular more attention should be devoted to the contextual and family factors related to pediatric headache.

Key words: headache, coping, quality of life, family, routine

Abbreviations: QoL quality of life, EFI Ecocultural Family Interview

(

Headache.

2002;42:953-962)

Headache has a frequent impact on everydayfunctioning of children in significant ways. Approxi-mately one million children and adolescents in theUnited States experience migraine headaches, andseveral hundred school days are missed each monthas a result of pediatric headache alone.

1

Moreover,children with headache report that pain significantlydecreases the amount of leisure time spent with peersand has negative effects on their usual daily activi-ties.

2

Unfortunately, research on recurrent pain in

children has focused primarily on the assessment ofpain symptoms to the neglect of the functional conse-quences of pain, which are highly relevant to overallchild and family well-being.

3

For example, numerousstudies have evaluated the validity of pediatric head-ache diary methods to assess the frequency and inten-sity of headache pain, but few have included any mea-sure of functional disability associated with headache.

4

In the 1990s there was an emerging scientific in-terest in quality of life (QoL), which is recognized asa major outcome measure of the impact of headacheand its treatment.

5,6

QoL is a concept that encom-passes a broad range of physical and psychologicalcharacteristics describing an individual’s ability tofunction and the satisfaction derived from doing so.

7

Health-related QoL is an expression of the individualperceptions of their position in life in the context ofthe culture and the value systems in which they liveand in relation to their goals, standards, and concerns.

8

From the Department of Developmental and Social Psychol-ogy (Dr. Frare and Prof. Axia) and the Pediatric Department(Prof. Battistella), University of Padova, Italy.

Address all correspondence to Prof. G. Axia, Department ofDevelopmental and Social Psychology, via Venezia 8, 35131Padova, Italy.

Accepted for publication July 9, 2002.

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November/December 2002

However, in pediatric headache research only 4 stud-ies considered QoL. Some authors

9

measured QoL byquestions on satisfaction with life in general, health,school, relationships with boy- and girlfriends, homesituation, and autonomy. Negative correlations werefound between headache duration and intensity andautonomy and between headache intensity versus satis-faction with the home situation. Other authors

2,10

devel-oped an ad hoc questionnaire to measure QoL inadolescents, and their study was replicated also in It-aly.

11

These studies show significant differences be-tween headache subjects and headache-free controlsubjects, with worst scores for the first in all the sub-scales measuring QoL. In particular the subscale “head-ache impact on daily activities,” “harmony,” “fatigue,”“cheerful mood/good humor,” “satisfaction with lifein general,” and “satisfaction with health” proved tobe sensitive to changes in headache presence.

2

The impact of headache on children’s QoL maybe also influenced by the individual ability to copewith headache. Coping can be defined as intentionalcognitive and behavioral efforts to manage specificexternal or internal demands (and conflicts betweenthem) that are appraised as stress because they aretaxing or exceeding the resources of the person.

12

Therecent interest for this issue derives from the observa-tion that pain causes disability and unease in some in-dividuals, whereas others are able to adapt to painand to the following stress.

13

Coping strategies mayexplain some of these individual differences, becausecoping may be adaptive or disadaptive in terms ofpain relief.

13,14

According to a recent review

8

in pedi-atric headache research only three studies examinedchildren’s coping strategies.

15-17

Structured interviewsshowed that 6- to 12-year-old children with migraineuse affective coping, in the form of seeking socialsupport, to manage the emotional responses to theirheadache.

15

In addition, they use problem-focusedcoping and cognitive coping in the form of thoughtstopping, spiritual coping, and mental distraction.

15

Doing nothing to deal with their headaches was re-ported by 18% of schoolchildren.

16

The KidCopequestionnaire

17

showed that the preferred strategiesof children for coping with pain are as follows (in de-scending order): taking medicine or lying down, dis-traction, relaxation, seeking family support, wishful

thinking, becoming helpless, problem solving, main-taining a future orientation, and remaining positive.

Recently Hartmaier et al

18

developed a briefquestionnaire to assess the functioning of adolescentmigraineurs during and immediately after an acute mi-graine attack. In their recent review Bandell-Hoekstraet al

8

suggested that more research on coping andQoL is needed in pediatric headache. In addition,they presented a conceptual model useful to guidethe study of recurrent headache, coping, and QoL inchildren. Their model (Figure 1) assumes that head-ache has an impact on the perceived QoL (arrow 1).Headache needs to be dealt with by using copingstrategies (arrow 2). The coping strategies applied in-fluence the QoL (arrow 3). Using strategies to copewith headache, regardless of the effect on QoL, influ-ences the experience of headache as in a feedbackloop (arrow 4). A diminished or low QoL can be per-ceived as a stressor, which triggers, maintains, or ex-acerbates headache (arrow 5). Coping strategies arerequired to deal with low QoL (arrow 6) and influ-ence the perceived headache (arrow 7). The strate-gies to cope with the stress may have an impact onthe QoL as in a feedback loop (arrow 8). Headache,coping, and QoL interact in a setting of personal andsituational variables (arrow 9).

Here we intend to identify the relationship be-tween headache, coping, QoL, and situational vari-ables using the model of Bandell-Hoekstra et al

8

asa guide. Our study is innovative because, as shownabove, in pediatric headache research only 3 studiesanalyzed children’s coping strategies

15-17

and only fourstudies considered QoL.

2,9-11

No studies investigatedthe joint relationship between headache, coping, andQoL in pediatric headache as proposed by the modelabove. Moreover, the model suggests that headache,coping, and QoL interact with a set of personal andsituational variables. The authors

8

distinguish between

person-specific variables

, including demographic vari-ables and psychological functioning, and

situation-specific variables

, including headache-related vari-ables and environment. In the present study we focusonly on situation-specific variables, because we wouldneed a larger sample to evaluate demographic vari-ables and psychological functioning. As for headachevariables we analyze separately the effects of each

Headache

955

headache index, such as frequency, intensity, and du-ration, so that we can determine how each interactswith child’s coping and QoL. For instance, it is possi-ble that headache frequency but not headache dura-tion predicts a good QoL for headache patients. Asfor the influence of environment on child’s pain expe-rience, the studies may be distinguished into 3 mainapproaches: social modeling, family beliefs and lifeevents, and sick role.

The first approach considers social modeling ascentral for the acquisition of patterns of behavior,pain included.

19

Children of patients with chronicheadache experience more headaches per month, ap-pear to be more concerned with their body image,and report less energy than their control counter-parts.

20

Turkat et al

21

found it possible to predictheadache from the presence or absence of a head-ache model in the family history. Moreover, both mi-graine and tension-type headache patients presentmore pain models in the family compared with theircontrol counterparts.

22

The second approach considers that the highestcorrelation between parents’ and children’s pain isdue to the family beliefs about health.

23

The children’sability to define their symptoms is actually learned bythe family members, who teach them what the illnessis and what the alarm signals are.

24

For example,mothers of headache children show good memoriesof their children’s motor development, but their mem-

ories of the mother-child relation are scant and frag-mentary.

25

Moreover, different studies have demon-strated the relationship between negative family lifeevents and child pain. For instance, adolescents withrecurrent headaches are more likely to have parentswho are divorced than headache-free control subjects.

26

Predisposing and psychosocial factors, however, dif-fer between migraine and tension-type headache.

27,28

The third approach refers to the concept of “sickrole,” initially described by Parsons

29

as a social phe-nomenon according to which an individual assumes arole in the society, not associated to one’s productiv-ity but only to one’s illness. Some authors suggestthat families may contribute to the maintenance ofchildren’s pain behaviors by means of reinforce-ments.

30,31

Pediatric studies noticed that migraine isoften a “pathological communication” within familyrelations characterized by strict maintenance of pre-determined rules.

32,33

All these approaches take into account the im-portance of environment in the etiology and mainte-nance of headache symptoms. Nonetheless, each ofthem focuses on just one aspect: the social modelingprimarily on observation, the family beliefs primarilyon beliefs, and the sick role on actions (in terms of re-inforcement). All these aspects are equally importantin influencing children’s headache experience, be-cause a prepuberal child is not alone in coping withpain, but he or she is helped, supported, and above all

Fig 1.—Conceptual model linking primary headache, coping, and QoL. (From Bandell-Hoekstra et al, 8 p. 358.)

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November/December 2002

influenced by the parents’ actions, beliefs, and feel-ings. It is our opinion that the study of the familydaily life organization includes all these important as-pects. In fact, all family activities are organized intodaily routines of life, which are “the architecture ofeveryday life.”

34

Also child’s headache attacks andthe following coping attempts by the child and by theparents are embedded in the family adaptive routineand therefore have an ecocultural value. Every hu-man action has an ecocultural value only when itbecomes an integral part of daily routine: in otherwords, activities that becomes routines (and there-fore part of everyday life) powerfully shape our ac-tions.

35

An adaptive routine represents the familyability to organize their daily activities in a mannerthat is useful, meaningful, and positive for all familymembers. Families achieve an adaptive routine throughaccommodations to resources, competing family com-petencies, and family episodes and goals in a rela-tively balanced functional manner. It is plausible thatif a family has a successful adaptive routine, the head-ache attacks also are more manageable both from thechild and from the family.

The aim of the present study is to study pediatricheadache, QoL, and coping in the context of familyeveryday life. We address 3 main research questionsraised by the model:

1. How does the conceptual model presentedby Bandell-Hoekstra et al

8

fit for our sam-ple? All the relationships presented in themodel will be tested by correlational analysis.

2. Does headache severity (frequency, inten-sity, and duration) influence children’s cop-ing strategies and their QoL? The expecta-tion is that headache severity leads thechild to a worst QoL (Figure 1, arrow 1) butalso to a better ability in coping with pain(arrow 2). If the attacks are severe in termsof frequency, intensity, and duration theymay have a negative impact on child’s phys-ical, social, and school functioning. More-over, if children have to struggle daily withsevere pain, it is plausible that they developmore successful strategies to cope with it.

3. Is there a relationship between family adap-tive routine, coping, and QoL? We expect

that the family adaptive routine influencesin a meaningful way the child’s headacheexperience and in particular his or herability to cope with pain and his or her QoL(Figure 1, arrow 9).

In brief, our study is aimed at testing model fit-ting hypotheses.

36

METHODS

Participants.—

Forty-eight Italian children (71%female) aged 11.0

�

1.9 years (range, 8 to 14) were re-cruited during the second semester 2000 at the Pedi-atric Headache Clinic of the Department of Pediat-rics, University of Padova, Italy.

According to the International Headache Soci-ety’s diagnostic criteria,

37

31 children (64%) were con-sidered to have migraine without aura, whereas 17(36%) were considered to have episodic tension-typeheadache. The inclusion criteria for this sample werea diagnosis of migraine or tension-type headache, atleast a 6-month history of headache, and at leastthree or more attacks in the last year before study en-rollment. Patients taking prophylactic headache med-ication were not included in our sample.

In the present study 3 indices were used to assessheadache severity:

1.

Frequency

(score 1 to 4). Patients reporteda mean headache frequency per month of2.8 (SD

�

1.1; median

�

2.0), with 3 chil-dren (6%) reporting less than one attack amonth, 22 (46%) reporting one to three at-tacks a month, 8 (17%) once a week, and15 (31%) twice or three times a week.

2.

Intensity

(score 1 to 3). The mean pain ratingfor their typical headache was 2.1 (SD

�

.6;median

�

2.0), with 5 patients (11%) report-ing a slight attack, corresponding roughlyto “I can continue what I am doing, bothhomework and playing”; 29 patients (60%)reporting an average attack, correspondingroughly to “I have to stop doing my home-work, but I can continue playing”; and 14patients (29%) reporting a strong attack,corresponding to “I have to stop whateverI am doing and I have to lie down.”

Headache

957

3.

Duration

(score 1 to 4). The mean head-ache duration was 2.3 hours (SD

�

.7;median

�

2.0), with 5 patients (11%) re-porting an attack lasting less than 1 hour,27 (56%) reporting an attack lasting 1 to 5hours, 15 (31%) reporting an attack lasting6 to 24 hours, and 1 (2%) reporting an at-tack lasting more than 24 hours duration.

Ecocultural Family Interview.—

In this study weuse an adaptation of the Ecocultural Family Inter-view (EFI) to explore some of the complex dimen-sions of Italian family life that might be influencingparents’ and children’s behaviors.

35

EFI is a parent in-terview that explores the daily routine of family lifein which the child and parent participate and themain concerns regarding how that routine is orga-nized. The EFI format is a mix of conversation, prob-ing questions by the interviewer, and preplannedquestions.

35

This technique of interviewing is innova-tive because it aims at giving voice to the persons whoare involved in the experience of pediatric headache.Starting from the words, opinions, feelings, motiva-tions, and cultural and cognitive models of all peopleinvolved, we can draw the full range of the variablesthat can have an impact on successful adaptations ofboth children and families. In our experience qualita-tive interviewing does not only provide rich informa-tion to the researcher, it also produces comfort andsupport to the parents.

35,38,39

The EFI was originallydeveloped to understand culture-sensitive adaptationprocesses in families with disabled children.

40

Adap-tations have been done a number of times already.We devised a new ad hoc EFI version for our Italiansample.

38,39

Informed consent was obtained by par-ents before the interview, which lasted about 1 hour.From verbal reports independent judges scored the48 interviews (70% agreement) along 15 items de-scribing the child’s coping with headache (eg, childgoes on doing his or her activities during headache at-tacks, child does not complain during headacheattacks), the child’s QoL (eg, level of child schoolfunctioning and performances, level of child socialfunctioning during leisure time), and the family adap-tive routine (eg, meaningfulness of daily routine andappropriateness to familys’ goals and values, ecologi-

cal fit or the ability of parents to keep routine goingby using variety of resources).

Each item had a score ranging from 0 to 8. Forour purposes items were grouped into three statisti-cally and theoretically significant dimensions thatare the major variables of our study: child coping(

��

.74; mean 4.0; SD 1.1), QoL (

��

.75; mean 4.9; SD1.4), and adaptive routine (

��

.75; mean 4.3; SD 1.1).

RESULTS

Correlational Model.—

We correlated all thevariables considered by the model, such as headache(distinguished into frequency, intensity, duration),coping, QoL, and environmental variables (familyadaptive routine), using Pearson’s coefficients. Fig-ure 2 summarizes graphically the significant results.There were significant negative correlations betweenQoL and headache frequency and between QoL andheadache duration. No significant correlation wasfound between QoL and headache intensity. Therewas a positive correlation between child coping andperceived QoL. The better children are able to copewith pain, the better their QoL is.

Finally, there were 2 positive correlations be-tween the family adaptive routine and child copingand between the family adaptive routine and QoL. Ifthe daily routine works well, the child is more able tocope with headache and his or her perceived QoL isbetter. These results confirm the general model; how-ever, they do not allow causal inferences on the direc-tions of the relationships between the variables. Forthis reason we decided to apply Lisrel procedures.Because of the size of our sample it was not possibleto test the whole model by Lisrel,

36

but we were ableto test separately parts of it.

Headache Severity, Coping, and QoL.—

Lisrel pro-cedures were then conducted to determine whetherfrequency, intensity, and duration influence chil-dren’s coping strategies and QoL. The predictorsconsidered were headache characteristics and childcoping. In other words, headache frequency, inten-sity, and duration were expected to predict both childcoping and QoL, whereas child coping was expectedto be a predictive factor for QoL. The dependentvariables were child coping and QoL.

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November/December 2002

To determine the significance of each explana-tory variable, the estimated regression coefficientsmust be examined in relation to their standard er-rors.

36

This is done by looking at the t-values. A for-mal test of the significance of the whole regressionequation can be obtained by computing:

where

R

2

is the squared multiple correlation listed inthe output file,

N

is the total sample size, and

q

is thenumber of genuine

x

variables. F is used as an F sta-tistic with

q

and

N

�

q

�

1 degrees of freedom. Table1 shows the regression coefficients and the F values.

FR

2q⁄

1 R2

–( ) N q 1––( )⁄----------------------------------------------------=

Intensity was not significant, and therefore its associ-ated values were not reported.

Only 2 regressions are statistically significant:headache frequency and duration represent goodpredictive factors for QoL but not for child coping.Figure 3 shows the models that better fit with thedata. In the first model the function of chi-squarewith one degree of freedom is .50 and is significant.However, the chi-square statistic has several set-backs. Above all, it is sensible to the sample size.Therefore, Lisrel suggests other fit indices: goodnessof fit index (.99), adjusted goodness of fit index (.96),and root mean square error of approximation (.00).All these fit indices are very good, and therefore wecan say that the observed model is not significantlydifferent from the theoretical model.

Also in the second model, all the fit indices arevery good, because the function of chi-square withone degree of freedom is not significant, goodness offit is .99, adjusted goodness of fit is .96, and rootmean square error of approximation is .00. There-fore, this second theoretical model also fits well withthe data.

As for the single parameter’s values, in the firstmodel the

�

estimate is 0.63, with 4.43 associatedt-value, whereas the

�

estimate is

�

0.56, with

�

4.06associated t-value. This means that the child’s ability

Fig 2.—Adapted conceptual model linking primary headache, coping, and QoL.

Table 1.—Regression Coefficients and F Values

R

2

q N

F

P

Value

Headache frequencyCoping .01 1 48 .48 NSQoL .41 2 48 15.77

�

.01Headache duration

Coping .01 1 48 .48 NSQoL .35 2 48 12.50

�

.01

Headache

959

to cope with headache is a good predictor for QoL,whereas frequent attacks predict a worst QoL. In thesecond model the

�

estimate is 0.53, with 3.51 associ-ated t-value, whereas the

�

estimate is

�

0.73, with

�

3.21 associated t-value. As in the first model thechild’s ability to cope with headache predicts a goodQoL, whereas long attacks lead to a worst QoL.

In summary, both headache frequency and dura-tion have a negative impact on QoL that is positivelyinfluenced also by child coping. Headache character-istics do not have an impact on child coping. Thisraises the question of determining what other factorshave an impact on children’s ability to cope withheadache.

Adaptive Routine, Coping, and QoL.—

To deter-mine whether the family adaptive routine has an im-pact on child’s ability to cope with pain and on QoL,a second Lisrel procedure was used. The predictorsconsidered were the family adaptive routine and childcoping. The family adaptive routine was expected topredict both child coping and QoL, whereas childcoping was expected to be a predictive factor forQoL. The dependents variables were child copingand QoL. Table 2 shows the regression coefficients

and the F values. All the regressions are highly signif-icant. This means that the child’s ability to cope withpain is predicted by the family adaptive routine,whereas his or her QoL is predicted both from thechild coping and the family adaptive routine. Figure 4graphically presents the results.

The model is saturated and so the fit is perfect.As for the single parameter’s values,

�

estimate forQoL is 0.44 with 2.70 associated t-value, whereas

�

estimates are 0.31 with 2.21 associated t-value for childcoping and 0.43 with 2.62 associated t-value for QoL.The family adaptive routine influences both childcoping and QoL, and child coping has an impact onQoL, even taking into account the effect of the familyroutine. The family ability to organize daily activitiesin a meaningful way for all family members repre-sents a predictive factor for the children’s successfulcoping strategies and for a good QoL. Moreover, theability to cope successfully with headache leads to abetter school, social, and physical functioning.

Fig 3.—Headache severity, coping, and QoL.

Table 2.—Regression Coefficients and F Values

R

2

q N

F

P

Value

RoutineCoping .10 1 48 5.26 NSQoL .31 2 48 10.33

�

.01Fig 4.—Routine, coping, and QoL.

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November/December 2002

COMMENTS

This study represents an initial attempt to ad-dress the relationship between pediatric headache,coping, and QoL in the context of family daily life. Toour knowledge no such broader attempt has everbeen carried out, even if a recent review suggestedthe need for more research on this issue.

8

In the presentstudy we address three main research questions.

The first research question aims at verifying howthe model presented by Bandell-Hoestra et al

8

fits forour sample. Correlational analysis confirmed most ofthe model, and all the relationships hypothesizedwere significant. In particular, children’s QoL is worstwhen the headache attacks are frequent and long.Conversely, headache intensity does not influencethe children’s QoL. These findings are in part consis-tent with the literature: different authors

9-11

suggestedthat both headache frequency and intensity have ameaningful impact on QoL, whereas the presentstudy has not found a significant association betweenheadache intensity and QoL. We demonstrated thatheadache frequency and duration but not intensityare associated to a worst child functioning. A possibleexplanation of this disagreement could be that to ourknowledge only one study

9

considered that headacheduration may also have an impact on child QoL,whereas others studies

10,11

take into account onlyheadache frequency and intensity. Our results showthe usefulness of considering frequency, intensity,and duration as different aspects of the headache ex-perience for children and their QoL.

The correlational analysis shows that children’sQoL is strictly related to the child coping and to thefamily adaptive routine. This kind of analysis doesnot allow us to draw conclusions on the direction ofthe relationship between these variables. Moreover,as shown above, no studies have assessed the joint re-lationship between these variables.

The second research question aims at verifying ifheadache severity (frequency, intensity, and duration)influences children’s coping strategies and their QoL.We expect that the more severe the attacks are, theless children are able to cope with them and thereforethe worst their school and social functioning is. Theresults obtained by Lisrel procedures demonstratedthat headache frequency and duration are good pre-

dictors for QoL, whereas neither index predicts achild’s ability to cope with pain. If our findings con-firm that long and frequent attacks determine a worstQoL, future research should try to focus on diminish-ing headache frequency and duration; in this waychildren could function better. Contrary to our ex-pectations headache characteristics are not associ-ated with child coping, thus showing that children’sability to cope with headache is not directly influ-enced by their experience of the disease—at least inthis sample. Surprisingly enough it seems there is norelation between headache and child coping.

The third research question aims at verifying acausal relationship between family adaptive routine,coping, and QoL. We hypothesized that the familyadaptive routine determines or somewhat influencesthe children’s ability to cope with pain and theirschool and social functioning. The results showedthat the family adaptive routine influences in a mean-ingful way both child coping and his or her QoL andthat child coping determines QoL. The family abilityto organize daily activities in a meaningful way for allfamily members represents a predictive factor forsuccessful coping strategies and for a good QoL. Ourfindings suggest that the headache experience does notaffect only the child’s life, but also family daily life.

In summary, we need to replicate this result byadopting different methods (ie, child interviews, ques-tionnaires) and to investigate the situational factorsthat may influence a child’s coping with headache.We observed here that the family daily routine signif-icantly influences children’s coping ability, showingthat more attention should be devoted to the contex-tual and family factors that have an impact on pediat-ric headache. For this reason it should be importantboth in research and in the treatment of headache toadopt an interactional approach that considers bothchildren and families. Future research should focusnot only on children’s resources, needs, and copingstyles, but also on family daily functioning.

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