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ORIGINAL ARTICLE How parents make sense of their young children’s expressions of everyday pain: A qualitative analysis C. Liossi 1,2,3 , G. Noble 3 , L.S. Franck 3,4 1 University of Southampton, UK 2 Great Ormond Street Hospital for Children, London, UK 3 UCL Institute of Child Health, London, UK 4 University of California, San Franscisco, CA, USA Correspondence Christina Liossi School of Psychology, University of Southampton, Highfield, SO17 1BJ. E-mail: [email protected] Funding sources None. Conflicts of interest None declared. Accepted for publication 28 December 2011 doi:10.1002/j.1532-2149.2012.00111.x Abstract Background: Little is known about the communication of everyday pain between young children and their parents, i.e. when children experience pain resulting from minor injury or illness that occur in everyday life. This study aimed to gain an in-depth understanding of how parents make sense of their young children’s expression of everyday pains and how they respond. Methods: Parents (n = 48) of children (1–5 years inclusive) participated in focus group discussions at seven children’s centres across England where they were asked to describe their children’s communication of everyday pain. Thematic analysis was used to analyse the data. Results: Six main themes were identified in the parents’ discourse. Parents described children’s pain communication as (1) sharing common elements, but unique to each child; (2) having multifaceted pain and non-pain-related purposes; (3) challenging to interpret; (4) influenced by their own pain- related communication; (5) requiring a variety of pharmacological, psycho- logical and physical strategies to manage. The sixth theme that emerged from the data related to parents’ dissatisfaction with health care providers, particularly general practitioners’ sometimes quick dismissal of parental concerns about their children’s pain and illness complaints. Conclusions: These findings suggest that parents have well developed, although personal, ways of recognizing and responding to their children’s communication of pain, but also experience uncertainty in their judgments. Parents would benefit from information about the developmental aspects of pain and should be included as active partners in their children’s pain assessment and management. 1. Introduction Young children living at home experience sporadic pain as a result of minor injuries (e.g. falls and cuts) or from minor illnesses (e.g. sore throats, headaches, stomach aches or ear infections). Children communi- cate their pain experience to their parents or other adult caregivers, who in turn interpret the communi- cation and respond accordingly. From birth, children rapidly develop their abilities to experience and express different sensations and emo- tions, including pain, as well as to regulate them. The development of these capabilities occurs at the same time as a wide range of highly visible skills in mobility (motor control), thinking (cognition) and communica- tion (language). At birth, the universal vocal expres- sion of pain is the cry. After about 12 months of age, children begin to use words and pain communication becomes more sophisticated (Craig et al., 2006). The exclamation ‘ow’ has been found in both clinical (Stan- ford et al., 2005a,b) and everyday pain situations (Franck et al., 2010a) to be a modal verbalization spe- 1166 Eur J Pain 16 (2012) 1166–1175 © 2012 European Federation of International Association for the Study of Pain Chapters

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Page 1: How parents make sense of their young children's expressions of everyday pain: A qualitative analysis

ORIGINAL ARTICLE

How parents make sense of their young children’s expressionsof everyday pain: A qualitative analysisC. Liossi1,2,3, G. Noble3, L.S. Franck3,4

1 University of Southampton, UK

2 Great Ormond Street Hospital for Children, London, UK

3 UCL Institute of Child Health, London, UK

4 University of California, San Franscisco, CA, USA

CorrespondenceChristina Liossi

School of Psychology, University of

Southampton, Highfield, SO17 1BJ.

E-mail: [email protected]

Funding sourcesNone.

Conflicts of interestNone declared.

Accepted for publication28 December 2011

doi:10.1002/j.1532-2149.2012.00111.x

Abstract

Background: Little is known about the communication of everyday painbetween young children and their parents, i.e. when children experiencepain resulting from minor injury or illness that occur in everyday life. Thisstudy aimed to gain an in-depth understanding of how parents make senseof their young children’s expression of everyday pains and how theyrespond.Methods: Parents (n = 48) of children (1–5 years inclusive) participated infocus group discussions at seven children’s centres across England wherethey were asked to describe their children’s communication of everydaypain. Thematic analysis was used to analyse the data.Results: Six main themes were identified in the parents’ discourse. Parentsdescribed children’s pain communication as (1) sharing common elements,but unique to each child; (2) having multifaceted pain and non-pain-relatedpurposes; (3) challenging to interpret; (4) influenced by their own pain-related communication; (5) requiring a variety of pharmacological, psycho-logical and physical strategies to manage. The sixth theme that emergedfrom the data related to parents’ dissatisfaction with health care providers,particularly general practitioners’ sometimes quick dismissal of parentalconcerns about their children’s pain and illness complaints.Conclusions: These findings suggest that parents have well developed,although personal, ways of recognizing and responding to their children’scommunication of pain, but also experience uncertainty in their judgments.Parents would benefit from information about the developmental aspects ofpain and should be included as active partners in their children’s painassessment and management.

1. Introduction

Young children living at home experience sporadicpain as a result of minor injuries (e.g. falls and cuts) orfrom minor illnesses (e.g. sore throats, headaches,stomach aches or ear infections). Children communi-cate their pain experience to their parents or otheradult caregivers, who in turn interpret the communi-cation and respond accordingly.

From birth, children rapidly develop their abilities toexperience and express different sensations and emo-

tions, including pain, as well as to regulate them. Thedevelopment of these capabilities occurs at the sametime as a wide range of highly visible skills in mobility(motor control), thinking (cognition) and communica-tion (language). At birth, the universal vocal expres-sion of pain is the cry. After about 12 months of age,children begin to use words and pain communicationbecomes more sophisticated (Craig et al., 2006). Theexclamation ‘ow’ has been found in both clinical (Stan-ford et al., 2005a,b) and everyday pain situations(Franck et al., 2010a) to be a modal verbalization spe-

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cific to the experience of pain. Other frequently usedword stems include, ‘ouch’, ‘hurt’, ‘boo-boo’, ‘ache’,‘sore’, ‘poorly’ and ‘pain’ (Franck et al., 2010a;Stanford et al., 2005a,b). Parents report that childrenshow distinct behavioural patterns when they havepain due to minor illnesses or injuries, which vary dueto contextual factors or child characteristics such as age,gender or prior health care experiences (Franck et al.,2010b).

The only two studies that have used direct observa-tion of how normally developing children respond toeveryday pain incidents occurring in day care settingsfound that they typically responded to a painful eventwith changes in facial expression, verbal complaints,crying and screaming (Fearon et al., 1996; von Baeyeret al., 1998). In a study of 3–5-year-old children, vonBaeyer and colleagues (von Baeyer et al., 1998) foundthat the responses of adult observers (day care workers)depended on the child’s facial expression rather thanthe severity of the injury. Fearon and colleagues(Fearon et al., 1996) argue that everyday pains mayhave considerable influence on children’s developmentof coping strategies because they occur frequently, areexperienced at varying intensities and are contextual-ized within the child’s normal social environment.Nevertheless, the focus of research to date has been onchildren’s experience and communication of clinicalpain and very little, if anything is known about howparents perceive, make sense of and respond to theiryoung children’s everyday pain expressions.

The present study investigated parents’ perception,interpretation and management of their children’sexpression of pain occurring in everyday situations. Aqualitative methodology and inductive thematicanalysis were used because of the exploratory natureof the research question.

2. Methods

2.1 Participants and procedure

Prior to proceeding with the project, the study wasapproved by the chairman’s action of the universityresearch ethics committee because the study met thecriteria for exemption from full committee review.Participants were accessed via seven Sure Start Chil-dren’s Centres1 in London, Ashford, Yeovil, Fareham,

Newcastle, Darwen and Braintree. Centres were pur-posively sampled to ensure a variety in geographiclocation (north, south, east, west of England), andurban/rural settings. With the assistance of the staff ateach centre, parents from a wide range of demographic(age, gender, socio-economic status) and family pro-files (number of children, family composition) wereencouraged to participate in order to ensure a range ofperspectives.

Parents of normally developing children, agedbetween 1–5 years, who were not suffering from anychronic medical condition were approached by thechildren’s centres and invited to participate in thestudy. In total, 48 parents attended the focus groups[44 mothers and 4 fathers; aged 24–55 years (mean34.5)]. The participants had between 1 and 6 childrenand were predominantly of White British ethnicity(n = 44). The other ethnicities represented were: 1Korean, 1 German, 1 Egyptian, 2 Ethiopian and 1Indian parent. One participant was a foster parentwho had fostered over 20 children. The focus groupstook place in meeting rooms in the children’s centresand child care was provided.

Focus groups followed a semi-structured interviewguide and were led by one or two psychologists (C.L.,G.N.) experienced in qualitative research. The aim ofthe focus groups was to elicit accounts of participants’experiences, including how their children expressedeveryday pain and related states such as illness andemotional upset, and how parents themselves madesense and reacted to their children’s expressions ofdistress. The definition of everyday pain was commu-nicated to parents at the outset and immediately reso-nated with their own views about what everyday painis. It was emphasized that only transient, short-lived,sporadic everyday pain was of interest in this investi-gation (Franck et al., 2010a,b). Interview questions(Table 1) were broad and open-ended, probes wereused carefully to get more in-depth answers or tofollow up on points of interest and the discussionwithin the focus groups was to a significant extentguided by issues raised by the participants. Investiga-tor bias was minimized by refraining from poor qualityquestioning such as using jargon, leading questions,not asking all the questions and making evaluativecomments (Rubin and Rubin, 1995). The researchersbracketed, set aside or suspended common senseassumptions about children’s everyday pain experi-ences and their parents’ reaction to them in order to

1Sure Start is the UK Government’s programme to deliverthe best start in life for every child by bringing together earlyeducation, childcare, health and family support. Sure Startcovers a wide range of programmes both universal and thosetargeted on particular local areas or disadvantaged

groups within England (http://www.education.gov.uk/childrenandyoungpeople/earlylearningandchildcare/delivery/surestart).

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understand how it is that parents make sense of theirchildren’s pain in everyday life in a real and concreteway. After each focus group, the researchers wroteadditional thoughts and feelings prompted by theinterviews in a reflective journal. The use of bracket-ing and journaling helped the interviewers avoidbiased judgments about what was being heard orobserved. This allowed participants’ perspectivesabout children’s pain to be reflected as the participantsviewed them, not as the researchers viewed them. Thefocus groups included 4 to 10 participants (x = 6.85),lasted as long as it took for the participant to sharetheir lived experience (between 30 and 70 min(x = 50.3 min) and the discussions were transcribedverbatim in real-time by a skilled transcriptionist.

Data were analysed using an inductive thematicanalysis, which is a data-driven form of thematicanalysis (Patton, 1990). In an inductive approach, thethemes identified emerge from the data themselveswithout trying to fit it into a pre-existing coding frame,or the researcher’s analytic preconceptions (Boyatzis,1998). Coding was undertaken by the second authorunder the supervision of the first author, and with thediscussion of emerging themes with all co-authors.Transcripts were read and reread in order to becomefamiliar with the content. Each unit of coding in thefirst transcript was then given a code name, usingvocabulary that was as close as possible to that used bythe participants themselves (Braun and Clarke, 2006).This procedure was repeated on the second and thirdtranscripts. When the same themes reoccurred, theywere provided with the same label. The next steptaken was to apply the initial codes to the rest of thedata. As data analysis progressed, codes were rede-fined and regrouped and new and alternative themesarose. Earlier transcripts were recoded as codes weredeveloped and refined. This cyclical process continueduntil all instances of the themes were identified andthe themes were coherently organized into a frame-work (Braun and Clarke, 2006). All coding was doneby hand. It was also examined whether themes dif-

fered based on demographics or family profiles. Morespecifically, subgroup differences were examined withrespect to gender (mothers vs. fathers), and number ofchildren (one vs. more than one). After the participantresponses were divided into subgroups, the research-ers went back to the coded text and examinedwhether the responses of different subgroup partici-pants fitted the subthemes and themes of the originalanalysis or new or different subthemes and themescould describe their data better. No differences werefound between the themes that emerged from thebigger data or the themes that best described everysubgroup’s data.

The investigators’ understanding of the text anddescriptions of the themes were continually checkedagainst the raw data in order to ensure that thethemes accurately represented the data (Boyatzis,1998; Braun and Clarke, 2006). The aim was tocollect data from a large and diverse group of parents;therefore, seven focus groups were planned in thegeographical locations that were conducted. After fivefocus groups, saturation was reached (i.e. new datano longer brought additional insights to the researchquestions) but because the number of focus groupswas fixed before the commencement of data collec-tion, data collection and analysis continued. In orderto document the analysis process, a detailed audittrail recorded the development of the codes and rela-tionship between the raw data and the refined cat-egories and codes. This paper trail was used by thethird author to agree and check the codes and isavailable on request.

3. Results

The following themes and subthemes were identifiedin the data (see Table 2) and are discussed below.Results were aggregated and are presented as one dataset given that there were no differences between thethemes that emerged from the full data set and thethemes that best described the data for each subgroup(i.e. mothers vs. fathers, and parent of one vs. parentof more than one child).

3.1 Young children’s pain expression is uniqueto each child

Parents reported their children as expressing pain both(a) verbally via vocalizations (e.g. screaming, crying)and words and (b) non-verbally via facial expressionand interpersonal behaviour. The majority of parentsdiscussed their children’s pain-related vocalizationssuch as exclamations, screams and cries. Although

Table 1 Focus group question guide.

How do you know when your child is in pain? What are usually the first

signs when your child is in pain?

Do you feel that you can always tell when your child is in pain?

Do you ever think that your child manages their reactions to pain

(e.g. either exaggerates or plays them down)?

What do you do when you think that your child is in pain?

Which words do you use most often when discussing pain with your

child?

What words would you use to express your pain?

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there were common elements, the overall presenta-tion of verbal and non-verbal expression were uniqueto each child. Many of the participants stated that asthey got to know their child, they could differentiatebetween different types of cry. The ‘pain cry’ was inmost cases thought to be a higher pitch, louder andmore insistent. A mother of a 2-year-old girl (P03)said: ‘The cries differ, they are higher pitched andmore insistent.’ Commonly used words included‘hurt’, ‘sore’ and ‘poorly’. A mother of a boy aged 3(P11) commented: ‘says “sore” and points to where ithurts.’ The terms ‘tummy ache’ and ‘headache’ wereoften used, sometimes incorrectly to describe pains inother parts of the child’s body. One mother com-mented: ‘The two children under 5 just say “tummyache” [for any pain].’

Parents stated that their children often demon-strated altered interpersonal communication styleswhen they were in pain. While many of the parentsreported that their children were usually very clingywhen hurt, others stated that their children mightbehave violently towards them. Changes in the child’severyday routine such as sleeping, eating and drinkingwere noticed. Parents also reported more condition-specific behaviours such as tugging at ears for earachesand tensing of muscles. Children were also reported toexpress their pain by their facial expressions. A motherof a 2-year-old boy (P23) exclaimed: ‘he used to hit me[when in pain] but really he was the one in pain’.Another mother of a 3-year-old boy and a 9-month-old girl (P14) added: “if he’s poorly he’s quiet and notrunning around, not doing anything . . .”

3.2 Children’s pain communication servesmultiple pain and non-pain-related purposes

Parents believed children’s pain communication tobecoming increasingly sophisticated as they grewolder and to serve multiple purposes including (1)expression of physical and emotional distress, (2) thepursuit of various personal goals such as pain relief,elicitation of emotional support, attention seeking,activity avoidance or continuation, and avoidance ofembarrassment, parental reprimand and treatment.Parents of older children reported that children some-times suppressed pain expressions so as to ensurepositive self-presentation (i.e. appear brave), (3)manipulation of interpersonal relationships in particu-lar sibling rivalry and family relationships. Childrenwere thought to demonstrate enhanced pain expres-sions in order to get another sibling into trouble andparents felt that children often complained of illnesswhen they had observed a sibling receiving medicineor special attention. Illustrative quotes for this themeinclude: ‘sometimes they play it down if they don’twant to go to the doctor . . . if I say if it’s bad we haveto go to the doctor and all of a sudden its better’(Mother of boy 5, girl 2; P37); ‘if she’s hurt herself, shedoesn’t cry, she’s embarrassed when she has an acci-dent, that’s why I know if she cries that it really hurts’(Mother of girl 4; P17) ‘They exaggerate when theywant something; it can be an object or even somesympathy . . . or to get one of the others in trouble’(Mother of boy 4; P2).

3.3 Challenges in interpreting children’spain communication

Parents faced challenges in interpreting their chil-dren’s pain behaviours due to children’s developmen-tal level and communication skills, but also due totheir own beliefs about childhood pain and illness.

3.3.1 Children’s developmental stage: lack ofsophisticated vocabulary

Due to children’s lack of sophisticated vocabulary,parents often found it difficult to understand theirchild’s pain. Their comments showed that childrenhad particular problems expressing internal symptomsand the area of pain, while visible injuries were mucheasier to communicate. A mother of a boy aged 3 anda 9-month-old girl (P14) said: ‘. . . last week he [son]did say his throat hurt, but if it’s not visible he doesn’tdistinguish where it is.’

Table 2 Themes and subthemes emerged from parents’ focus groups.

(1) Young children’s pain expression is unique to each child.

(2) Children’s pain communication serves multiple pain and

non-pain-related purposes.

(a) Expression of physical and emotional distress

(b) The pursuit of various personal goals.

(c) Manipulation of interpersonal relationships in particular sibling

rivalry and family relationships.

(3) Challenges in interpreting children’s pain communication.

(a) Children’s developmental stage-lack of sophisticated vocabulary.

(b) Children’s developmental stage-cognitive abilities.

(c) Children’s developmental stage-limited emotion regulation skills.

(d) Parental beliefs.

(e) Parental interpretation of symptoms including cause/area of pain

and distinction with emotional distress and other non-painful

illness.

(4) Parental communication of pain.

(5) Children’s pain management requires a variety of pharmacological,

psychological and physical strategies.

(6) Unsatisfactory interactions with the health care system.

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3.3.2 Children’s developmental stage:cognitive abilities

According to the discussions, young children appearedto have difficulties in differentiating the intensity ofpain and their reports were influenced by other factorsthat were accompanying or not the pain experience.Children were reported to have extreme reactions topain when accompanied by blood, even if there wasonly a small wound with very little blood, whereasparents felt that a similar or even more intense painwith no blood would not cause such distress. A motherof two boys 5 and 2 years old (P44) commented: ‘. . .the little one is very resilient, internal pain they do notexaggerate, they only make a drama if it’s somethingyou can see, like “LOOK – BLOOD!”.’ The experienceof pain in the presence of an open wound and bloodpossibly signifies a serious threat to physical integrity,which can cause toddlers to become distressed giventheir limited cognitive abilities to appropriately evalu-ate the magnitude of pain and injury.

3.3.3 Children’s developmental stage: limitedemotion regulation skills

Parents felt that children often showed excessive reac-tions in situations that should only cause very minordistress. ‘. . . after the last jabs and 3 hours she was stillunable to move arm. Very sensitive, tearful, cried con-stantly’ (Mother of girl 4; P29). From the focus groupdiscussions, it was apparent that many parents con-sider recommended standard immunizations ofhealthy children a normal part of childhood thereforecloser to everyday than medical/clinical pain. Thisview was not shared by all parents.

Even though cognitive abilities and limited emotionregulation skills appear as different subthemes relatingto the children’s developmental stage, it needs to beacknowledged that cognition and emotion are inextri-cably linked and there is ample evidence that execu-tive control of attention, action and emotion are skillsthat develop in concert in the pre-school period(Carlson and Wang, 2007).

3.3.4 Parental beliefs

Parents described their own beliefs regarding pain ingeneral, what hurts, the pain thresholds of differentchildren and children’s intentions and attempts tocontrol their environment. Illustrative quotes for thistheme include ‘I find every child is different, the oneto fives seem to have a higher pain threshold thanolder ones, an eight year old is screaming for hours buta five year old you put a mister happy on it and they

run off playing.’ (Foster father of boy 6, boy 4, boy 11months; P25); ‘he’s a drama queen, in his former lifehe must have been on stage (laughs)’ (Mother of boy19 months, boy 4 months; P12).

3.3.5 Parental interpretation of symptomsincluding cause/area of pain and distinction withemotional distress and other non-painful illness

The discussion groups highlighted the different inter-pretations (and associated uncertainty) which parentshad regarding their children’s symptoms and beha-viours. Parents reported that there were often situa-tions when they knew their children were experienc-ing pain but they had difficulty identifying the cause ofthese feelings. This difficulty was usually associatedwith internal symptoms that the children were unableto describe effectively. Parents generally reported thatthey had little difficulty in identifying signs of emo-tional distress that were not related to pain or illness.Parents reported their strategies for determiningwhether their child was unwell. The most commonresponse was to take the child’s temperature;however, observation and instinct featured regularly.Parents also contacted health care professionals forfurther advice if they were unsure. The followingquotes capture some of the richness of the partici-pants’ experience: ‘My daughter says she has “a head-ache everywhere”, I think this might be because Isuffer from migraines. Every pain was known as a“headache” then I would have to identify the specificarea of pain i.e. “does it hurt here or here . . .” ’(Mother of girl 4; p21); ‘they go very quiet andreserved when they are upset, withdrawn. When inpain they are clingy.’ (Mother of boy 5, girl 3; P19);‘Put him to lie down and phone hospital, intuition andobservation are important’ (Mother of boy 4; P27);‘. . . it’s easy . . . his bottom lip goes, he sighs-if he’sunhappy . . .’ (Mother of boy 4, girl 1; P3).

Uncertainty over the interpretation of the severityand significance of child pain symptoms was alsoreflected in disagreements parents experienced withtheir spouses ‘My husband always think it’s the worst,if it’s a headache he’s like “MENINGITIS!” and I’m likeno, it’s fine, so we argue about it.’ (Mother of boy 3,boy 2; P31) or ‘It’s good to have a balance though,with one thinking its serious and the other more blasé,it would be worse if you were both one way.’ (Fosterfather of boy 6, boy 4, boy 11 months; P25).

3.4 Parental communication of pain

Parents used very similar language to that of theirchildren when discussing the child’s pain or illness. ‘I

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use the word “poorly” and he has begun to use theword too’ (Mother of boy 3 + older child; P41). Theyalso debated whether it was appropriate to discloseinformation about their personal pain to their chil-dren. The parents who felt it was appropriate todiscuss this with their children also reported difficul-ties in explaining these concepts to their young chil-dren using simple language. ‘I don’t tell her unless shehas hurt me, then I say “you’ve hurt me” ’ (Father ofgirl 2; P06); ‘I’ll try to explain so he doesn’t get con-fused, like “mummy’s a bit poorly today”.’ (Mother ofboy 19 months, boy 4 months; P08).

Comments made by the parents supported the ideathat children learn through interactions with otherpeople, particularly their parents. ‘If I say mummy’snot well, she’ll say neither am I’, said a mother of a2-year-old girl (P32). ‘. . . they gauge your reaction, soif you gasp, they react’ (Mother of boy 9, girl 3; P46).

3.5 Children’s pain management requires avariety of pharmacological, psychological andphysical strategies

Parents used a variety of strategies to manage theirchildren’s pain including pharmacological, psychologi-cal and a variety of other physical methods. Therewere very mixed opinions from parents regarding theuse of medicines to treat children’s pain. Many parentsexpressed a difficulty in deciding when it was appro-priate to give medicine to their children. They worriedabout the effects of giving medicine too often andwhen unnecessary, but also worried about their childsuffering when they had the means to make them feelbetter. Some parents stated that they would give theirchildren medicine ‘just in case’. ‘If in doubt I giveparacetamol’ said a mother of two, an 8-year-old girland a 16-month-old boy (P20).

The parents also discussed various psychologicalstrategies including reassurance and distraction. Someparents who believed that their children were exag-gerating or being manipulative used other strategiessuch as ignoring to try to reduce their child’s reactions.A mother of a girl aged 6 and a boy aged 2 (P09)shared her insight: ‘there’s that big pause, like are theygonna cry or not, and you have to decide, you cancatch it and change it’; another mother of a 4 -year-oldgirl (P02) added ‘if you start smiling right away itsusually alright sometimes they are just scared’ and amother of a 3-year-old boy and an older child (P39)concluded ‘if they have inflicted pain on each other Iwon’t give either of them sympathy.’

Physical pain management strategies included theuse of plasters, massage and hot water bottles. One of

the participants observed: ‘Everything needs a plaster.Plasters make it all better.’ (Mother of girl 3, boy 18months; P04).

3.6 Unsatisfactory interactions with the healthcare system

Parents were not asked about their experiences withhealth care providers; however, this topic repeatedlyarose during the focus group sessions. Parents werecritical of the attitudes of health care providers and felta lack of appreciation of the importance of theirunique knowledge about their child: ‘. . . as a parentyou know better than anyone’ (Mother of girl 2; P15).Parents felt that their concerns about their children’spain were not always listened to, in particular, bygeneral practitioners. One of the participants sharedher experience in relation to her daughter’s earache: ‘Ijust think you know when something’s not right, Ifind a lot of times if you go to GPs they don’t listen,they palm you off because you’re not a doctor, theyshould listen’ (Mother of girl 2; P22).

4. Discussion

This qualitative study aimed to explore how parentsperceive their children’s expression of everyday pain,how they interpret it and how they respond to it. Nostudy to date has explored these aspects of parent childcommunication in the context of everyday pain andthis despite the fact that everyday pain experiencestarts very early on in life, is universal, frequent andprobably critical in the development of pain beha-viours later in life. Given the dearth of research on thetopic, a qualitative design was adopted and thematicanalysis was used to analyse the data.

A number of significant themes that support andexpand previous knowledge emerged from the dataand are discussed in detail below. First, based onparents’ views of children’s everyday pain, we advo-cate adoption of an expanded definition, compared toprevious research (Fearon et al., 1996; von Baeyeret al., 1998) of such pain to include not only minorinjuries but also everyday illnesses.

Parents acknowledged that young children expresspain both verbally and non-verbally and reportedtheir children’s pain-related vocabulary to be verysimilar to the findings from a UK-wide web surveyconducted by our group (Franck et al., 2010a) inwhich 45% of 1716 parents of children aged between1 and 5 years reported that their child had at least oneword to express pain by 17 months of age, increasingto 81% by 23 months of age. The most common first

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words for pain were ‘ow’ and ‘oh dear’ followed by‘hurt’ and ‘ouch’ and older children gave more elabo-rate descriptions of what they felt and how it affectedthem.

Parents reported that with age, children becomeincreasingly sophisticated in their expression andexperience, understanding and regulation of pain. Theemotional states of toddlers and pre-schoolers arecomplex. They depend on their emerging executivecapacities to identify and understand their own feel-ings and understand what others are doing and think-ing, as well as to interpret the nuances of how othersrespond to them (Eisenberg and Morris, 2002). Asthey mature and acquire a better understanding of arange of emotions, they also become more capable ofregulating their feelings, which is one of the mostchallenging tasks of early childhood. By the end of thepre-school years, children who have acquired a strongemotional foundation have the capacity to anticipate,talk about and use their awareness of their own andothers’ feelings to better manage everyday social inter-actions (Sandberg and Spritz, 2009). Their emotionalrepertoires have expanded dramatically and includesuch feelings as pride, shame, guilt and embarrass-ment. Throughout the early childhood years, childrendevelop increasing capacities to use language to com-municate how they feel and to gain help without‘melting down,’ as well as to inhibit the expression ofemotions that are inappropriate for a particular setting(Denham, 1998; Eisenberg and Morris, 2002). In thisstudy, parents articulated beautifully for the first timein the published literature how their young childrenwere developing these abilities in relation to painexpression. For example, children would adapt theirreactions to suit different purposes. Parents sometimesfelt that their children would try to manipulate themto gain medicine, attention, get another child introuble or to avoid activities that they did not wish toparticipate in. Children were also capable of regulatingtheir pain reactions so as to pursue a pleasurable acti-vity, avoid embarrassment, being reprimanded ortaken to the doctor’s.

As expected, parents reported that younger childrenappeared to have difficulty expressing the cause/areaof pain particularly if there was not visible injury anddifficulty in expressing the severity of the pain. It iswell documented that many children younger than 5years old tend to treat pain rating scales as dichoto-mous, showing a preference for the top and/or bottomscores in studies of clinical, experimental and hypo-thetical pain (von Baeyer et al., 1997; Goodenoughet al., 1997; Hicks et al., 2001; Chambers andJohnston, 2002; von Baeyer et al., 2009). This has

implications for the way in which health care profes-sionals enquire about young children’s pain and bothparents and health care professionals need to appreci-ate the influence of developmental level on children’spain communication.

It was striking that parents face challenges andsubstantial uncertainty in interpreting their chil-dren’s pain behaviours due to child-related factorsbut also due to their own beliefs towards childhoodpain and illness. Some parents admitted that theywere quick to label their children as ‘drama queens’,would ignore their child if they thought they wereexaggerating, and that they would treat each childdifferently. Research indicates that inferences of painin others are influenced by the characteristics of theperson in pain [‘bottom-up variables’; e.g. facialexpressions (de C Williams, 2002)] and by the indi-vidual characteristics of the observer [‘top-downvariables’ (Goubert et al., 2005)]. Catastrophizingabout (one’s own) pain, defined as an exaggeratednegative focus on pain, is one such observer charac-teristic that has been found to be related to infer-ences of higher pain in others (Sullivan et al., 2006).The variables that affect pain inferences (of others’pain) may also affect observers’ emotional reactionsto another’s pain (Goubert et al., 2005). Furtherresearch is needed to determine how these influ-ences develop in early childhood through interactionwith parents and other adult caregivers. Strategies toprevent maladaptive responses (e.g. denial of orexcessive attention to pain in others) could then bedeveloped and tested.

Based on our data, a theoretical framework for con-ceptualizing intrapersonal and interpersonal processesrelevant to young children’s communication of every-day pain emerges. The model is consistent with thecommunications model of pain (Prkachin and Craig,1995; Hadjistavropoulos and Craig, 2002; Craig,2009), which has been used to understand phenom-ena such as the role of facial expression in the com-munication of pain (Prkachin and Craig, 1995), thechallenges of delivering care to infants (Craig, Korol, &Pillai, 2002) and differences between automatic/reflexive and executive responding during painfulevents (Hadjistavropoulos and Craig, 2002). Themodel has recently been comprehensively described ina seminal paper integrating clinical, neuroscience,social communications and evolutionary perspectives(Hadjistavropoulos et al., 2011). According to ourdata, the pain communication process is initiated by anoxious stimulus (internal or external) that leads thetoddler/pre-schooler to experience an internal state ofpain with its associated sensations, thoughts and feel-

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ings. Before the subjective state of pain becomesexpressed, the young child uses their current execu-tive function and emotion regulation skills to modu-late pain expression in verbal and non-verbal ways.Next, parents attempt to identify pain and accuratelyevaluate the nature of the child’s distress. Beforetaking any action parents use their own meta-cognitive and meta-emotional skills and finally delivercare in the form of pharmacological, psychological andphysical interventions. Of course, the process of paincommunication is influenced by a number of biologi-cal (e.g. parents mentioned in particular the tempera-ment of an individual child), psychological, contextual(e.g. pain experienced at the playground vs. at home)and social factors. A social factor that featured promi-nently in this study was parental modelling in terms ofparents’ verbal and non-verbal expression of ownpain.

Parents differed in their way of communicatingabout pain with their children, some were freelyadmitting to being ill and discussing it with theirchildren while others preferred to hide it. Most wereconscious that their own reactions are modelled bytheir children and influence their verbal and non-verbal pain-related behaviours. Social learningtheory (Bandura, 1977) provides a strong conceptualframework for understanding much of the develop-ment and maintenance of illness behaviour and hasbeen suggested that such learning might occurduring childhood if parents rewarded somatic com-plaints and/or modelled illness behaviour. Thatparents’ own experience of pain episodes providechildren with opportunities to model pain behav-iours, has been demonstrated in both communityand clinical samples (Turkat et al., 1984; Goodmanet al., 1997; Thastum et al., 1997) as well as in lab-based studies (Goodman and McGrath, 2003).

Parents in this study reported using a wide variety ofpain management interventions. Specifically in termsof medication, some parents would give their childrenmedicine because they thought that they might pos-sibly be in pain, others were firmly against pain reliefunless it was absolutely necessary. Parents in previousstudies have admitted using paracetamol apart frompain and fever control to calm upset children, lift chil-dren’s mood and sedate children so that parents canget some sleep; it appears that use of medication canincrease parents’ control and facilitate time manage-ment when a child is ill (Lagerlov et al., 2003; Alloteyet al., 2004).

Unexpectedly, many parents expressed dissatisfac-tion in their experiences of communicating abouttheir child’s pain with health care professionals. They

often felt that general practitioners did not listen tothem and would regard them as overprotective. It isknown from previous research, and our participantsconfirmed this, that consultations in which doctorsinvolved parents more in discussions and decisionmaking are associated with greater parent satisfaction(Wasserman et al., 1984; Lewis et al., 1991; Wissowet al., 1998). Of course, as Green (1990) points out,paediatric practice poses unique professional stressesincluding caring for intensely anxious patients andfamilies, hostile, challenging, demanding or threaten-ing parents, multiple problem patients, and familiesand parents who seek to dictate and control investi-gation and management. Further research intoparent–health care professional interactions would bebeneficial to understand the dynamics of this problemand to provide suggestions that will enhance bothpartners’ satisfaction.

Several limitations of this research should be con-sidered when interpreting the findings. Firstly, theresults of this preliminary exploratory study are notintended to be generalized. Secondly, data wereobtained by parental self-report and may be influ-enced by memory bias or the wish to present the selfand child in a certain light. Further observationalstudies of parents and children interacting in everydaypain situations are necessary to confirm the findings.Direct observations of parents and children interactingin both real and laboratory-based playgrounds are cur-rently underway.

In summary, this research gives us a better insightinto the complex nature of child parent communica-tion and reinforces the need for better parental edu-cation about children’s cognitive and emotionaldevelopment especially in regards to pain expressionand also education regarding appropriate actions totake when their child experiences pain. Simpleevidence-based leaflets have been developed for thispurpose (Power et al., 2007) and comprehensiveparenting information and advice is being developed,and disseminated to the wider parent populationonline (Franck and Liossi, 2008). Health care profes-sionals also need a greater appreciation of how chil-dren’s developmental level shapes their painexpression. Finally, further exploration is needed ofthe communication between parents and their child’shealth care providers to understand the barriers andfacilitators of mutually satisfactory interactions.

Author contributions

CL and LF designed the study and wrote the protocol. GNwas study manager, and together with CL collected data. CL

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supervised the data analysis and all authors participated. CLand LF prepared the first draft of the paper. All authorsdiscussed the results and commented on the manuscript. LFis the guarantor.

Acknowledgements

We thank the parents of young children who so enthusias-tically participated in this study. We also thank the teams atMunro & Forster for their expertise in public communica-tions, and Annie Saunders, Razia Nuur and Take Note Ltd fortheir skills in transcribing the focus group discussions. Wewould also like to thank two anonymous referees for theirthoughtful and detailed suggestions.

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