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

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<ul><li><p>ORIGINAL ARTICLE</p><p>How parents make sense of their young childrens expressionsof everyday pain: A qualitative analysisC. Liossi1,2,3, G. Noble3, L.S. Franck3,4</p><p>1 University of Southampton, UK</p><p>2 Great Ormond Street Hospital for Children, London, UK</p><p>3 UCL Institute of Child Health, London, UK</p><p>4 University of California, San Franscisco, CA, USA</p><p>CorrespondenceChristina Liossi</p><p>School of Psychology, University of</p><p>Southampton, Higheld, SO17 1BJ.</p><p>E-mail:</p><p>Funding sourcesNone.</p><p>Conicts of interestNone declared.</p><p>Accepted for publication28 December 2011</p><p>doi:10.1002/j.1532-2149.2012.00111.x</p><p>Abstract</p><p>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 childrens expression of everyday pains and how theyrespond.Methods: Parents (n = 48) of children (15 years inclusive) participated infocus group discussions at seven childrens centres across England wherethey were asked to describe their childrens communication of everydaypain. Thematic analysis was used to analyse the data.Results: Six main themes were identified in the parents discourse. Parentsdescribed childrens 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 childrens pain and illness complaints.Conclusions: These findings suggest that parents have well developed,although personal, ways of recognizing and responding to their childrenscommunication 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 childrens painassessment and management.</p><p>1. Introduction</p><p>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.</p><p>From birth, children rapidly develop their abilities toexperience and express different sensations and emo-</p><p>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-</p><p>1166 Eur J Pain 16 (2012) 11661175 2012 European Federation of International Association for the Study of Pain Chapters</p></li><li><p>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).</p><p>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 35-year-old children, vonBaeyer and colleagues (von Baeyer et al., 1998) foundthat the responses of adult observers (day care workers)depended on the childs facial expression rather thanthe severity of the injury. Fearon and colleagues(Fearon et al., 1996) argue that everyday pains mayhave considerable influence on childrens developmentof coping strategies because they occur frequently, areexperienced at varying intensities and are contextual-ized within the childs normal social environment.Nevertheless, the focus of research to date has been onchildrens experience and communication of clinicalpain and very little, if anything is known about howparents perceive, make sense of and respond to theiryoung childrens everyday pain expressions.</p><p>The present study investigated parents perception,interpretation and management of their childrensexpression of pain occurring in everyday situations. Aqualitative methodology and inductive thematicanalysis were used because of the exploratory natureof the research question.</p><p>2. Methods</p><p>2.1 Participants and procedure</p><p>Prior to proceeding with the project, the study wasapproved by the chairmans 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-drens Centres1 in London, Ashford, Yeovil, Fareham,</p><p>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.</p><p>Parents of normally developing children, agedbetween 15 years, who were not suffering from anychronic medical condition were approached by thechildrens centres and invited to participate in thestudy. In total, 48 parents attended the focus groups[44 mothers and 4 fathers; aged 2455 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 childrens centresand child care was provided.</p><p>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 participantsexperiences, including how their children expressedeveryday pain and related states such as illness andemotional upset, and how parents themselves madesense and reacted to their childrens 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 childrens everyday pain experi-ences and their parents reaction to them in order to</p><p>1Sure Start is the UK Governments 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</p><p>groups within England (</p><p>C. Liossi et al. Young childrens expressions of everyday pain</p><p>1167Eur J Pain 16 (2012) 11661175 2012 European Federation of International Association for the Study of Pain Chapters</p></li><li><p>understand how it is that parents make sense of theirchildrens 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 childrens 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.</p><p>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 researchers 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-</p><p>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 everysubgroups data.</p><p>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.</p><p>3. Results</p><p>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).</p><p>3.1 Young childrens pain expression is uniqueto each child</p><p>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 childrens pain-related vocalizationssuch as exclamations, screams and cries. Although</p><p>Table 1 Focus group question guide.</p><p>How do you know when your child is in pain? What are usually the rst</p><p>signs when your child is in pain?</p><p>Do you feel that you can always tell when your child is in pain?</p><p>Do you ever think that your child manages their reactions to pain</p><p>(e.g. either exaggerates or plays them down)?</p><p>What do you do when you think that your child is in pain?</p><p>Which words do you use most often when discussing pain with your</p><p>child?</p><p>What words would you use to express your pain?</p><p>Young childrens expressions of everyday pain C. Liossi et al.</p><p>1168 Eur J Pain 16 (2012) 11661175 2012 European Federation of International Association for the Study of Pain Chapters</p></li><li><p>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 includedhurt, 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 childs body. One mother com-mented: The two children under 5 just say tummyache [for any pain].</p><p>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 childseveryday 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. Childre...</p></li></ul>


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