In a narrative study of children with chronic pain and their fam- ilies in the UK, Carter ( 2002, 2004) described how children experi- ence \200\230referral fatigue \200\231 in their \200\230diagnostic quest \200\231 (see also Lillrank, 2003; Ong et al., 2004), from one s pecialist to the next, as well as professional \200\230ventriloquism, \200\231 where \200 \230the child \200\231s words are reinter- preted and mistranslated through the professiona ls \200\231 own paradig- matic understanding of the narrative \200\231 (Carter, 2002, p. 36 ). Disparities in children \200\231s health have been reported within three common pediatric h ealth conditions: asthma, oral health, and obesity/type 2 diabetes (Fuemmeler et al., 2009) . Access to health care is also an obstacle for uninsured children, who are dispro- portion ally minority children. Fuemmeler et al. also report that Hispanic children are more than t wice as likely to be non-insured in the US. Hispanic children are also the least likely to be insured with the numerous risk factors and consequences (Flores et al., 2006). In a revi ew study of barriers to health care for Latino children in the US, Flores and Vegas (1998) reported that Latino children are more likely to be poor, the most uninsured, and have pare nts with the lowest education attainment. In addition, Latino children experi- enced provid er-related barriers such as reduced screening, missed vaccination opportunities, decreased likelihood of receiving pre- scriptions, suboptimal management plans, inadequate communi- c ation and patient education, and perceptions of negative attitudes. It is fundamental then to acquiesce that social inequalities and racism, and not culture per se, are oft en the cu lprits of profoundly unjust health disparities. Children \200\231s negative experiences of communication inside the clinic/hospital are mis sed opportunities to incorporate the richness of children \200\231s own pain narratives int o clinical decisions. Based on a qualitative analysis of the narratives of 45 children with chronic pain attending a US multidisciplinary tertiary care specializing in pain, Meldrum et al. (2009) identifi ed fi ve common themes in children \200\231s narratives: hiding pain from parents and friends; a sense of isolation and diff erence from peers and classmates; pain as an obstacle to personal activities; fears about how pain will aff ect the future; a nd perceived lack of physician understanding. Th ese themes are articulated in six diff ere nt narratives or plotlines: the constant patient, the invalid, the weary soldier, the stoic , the posi- tive thinker, and the decision-maker. Meldrum et al. (2008) also identifi ed a functioning strategy developed by the children them- selves, \200\230getting on with life \200\231, which involves ignoring the pain and trying to keep going. Th ese authors also pr ovide additional sup- port to two self-developed strategies identifi ed by Hunfeld et al. ( 2001): \200\230planning ahead, \200\231 which involves deliberatively organiz- ing activit ies while reducing stress, and \200\230body awareness, \200\231 which involves becoming aw are of one \200\231s body while distracting oneself from the pain. A further discussion of persisting pain can be found in Chapter 32 by Mherekumombe and Collins. Pediatric pain in communicative context Pediatric acute pain and communication In the same way that culture and ethnicity infl uence children \200\231s pain experiences, a number of contextual factors \200\224also referred to as situ- ational or environmental \200\224infl uence pain experiences. Contextual factors are discussed elsewhere in this volume in chapte rs on dis- traction (Cohen et al., Chapter 53), pain and the family (Birnie et al., Chapter 12), and the various measurement chapters \200\224especially with non-verbal populations ( e.g. Lee and Stevens, Chapter 35; Chorney and McMurtry, Chapter 37). However, a way to reme mber key con- textual factors includes using interrogatives (what, when, who, whom, where, and how). Adult (parent and staff ) and child behaviors are highly interactive, aff ecting each other in subtle, susceptible, and almost-immediate ways. Because of this, current and future studies are moving beyond who is present during a painful procedure, to Conclusion In this chapter, the complexity of examining the relationships between culture a nd pain, and communication and pain has been highlighted. Neither pain nor culture and comm unication are ame- nable to \200\230easy answers and fi xes. \200\231 Indeed, \200\230eas y answers and fi xes \200\231 lead to ignoring or stereotyping cultural and communicative d iff er- ences. On the contrary, the variability of cultural and communica- tive contextual factors only adds to the variability of subjective and deeply personal pain experiences. We are beginning to understand how cultural and communica- tive factors infl uence pain and what aspects of pain they infl uence. Cultural and communicative factors aff ecting pain a re characterized CHAPTER 11 pain in cultural and communicative contexts 107 Table 11.1 Contextual variables based on interrogatives What a Praising the child is neither related to child coping nor distress Empathic and apologetic statements are positively related to child distress Reassurances fail to diminish displays of child and infant distress, and may magnify them Adult promoted attention manipulation (e .g. passive and active distraction) are bene \201 cial in child coping and reducing pain W hen the distraction intervention requires too much attention, the distress may interfere wi th the child \200\231s ability to focus on the distraction When Children \200\231s distress is likely to be preceded and followed by adult distress promoti ng behaviors (e.g. reassurances) in what seems a circular relationship Children \200\231s e ngagement in coping behaviors, such talk unrelated to the painful procedure, humor and copi ng statements, is also preceded and followed by adult coping-prompting behaviors Child dist ress and coping, and adult behaviors change according to the phase of the medical procedure Type of adult coping promoting and child coping behaviors correlate within a speci \201 c phase, but not across phases Who Nurses \200\231 increased coping promoting behaviors are associated with an increase in par ental coping promoting behaviors Whereas nurses \200\231 and physicians \200\231 behaviors are uniformly negatively associated with child distress, some parental behaviors are associ ated with child distress Whom Whereas the same behavior of adult non-procedural talk to another adult is neutral, when ad dressed to the child, non-procedural talk is child coping promoting Despite the development al changes in children \200\231s pain expression, it remains to be determined whether obser vational measures of children \200\231 procedural pain need to be aged-normed Observational measures have shown good evidence supporting their validity from early childhood through l ate adolescence Where (1) Physical setting: Needle procedures should not be conducted in the patient \200\231s ow n room to preserve the room as a refuge Noise and light have a negative e \200 ect in the context of neonatal pain (2) Psychosocial setting: Th e evidence is inconclusive regarding the in \202 uence of parental presence child distress and behavioral outcomes, without dis tinguishing whether the father or the mother is the parent present, or whether one or both are present What parents do is more relevant than whether they are in the room vis- -vis child distress reduction (3) Th e body as a means to communicate: Caregivers \200\231 inst rumental, task-ful \201 lling (e.g. to restrain the child) touch is correlated with child distress, whereas supportive touch is not Caregivers may stand at a close distance but prov ide no supportive touch to the distressed child Combinations of supportive touch, posture, and movement (e.g. skin-to-skin kangaroo, rocking, holding, and to a lesser degree, bouncin g, patting, kissing, rubbing, and hugging) have been shown to reduce preterm, neonate, and infant distress Th e evidence of the e \203 cacy of handholding is inconclusive, although some evidence points that it depends on who is holding (nurse versus parent) the child \200 \231s hand How Th e production of a parental linguistic expression can vary widely in terms of tone, pitch , loudness as well as in terms of the non-verbal communication accompanying it Th e lack of attention to non-verbal communication may explain the contradictory \201 ndings regardin g whether parental empathic supportive talk is related to increased or decreased child pain during painful procedures Ordering the child to relax with a forceful imperative like \200\230Relax! \200\231 and \200\230Breathe! \200\231 is a di \200 erent action when comp ared to parents modeling deep breathing Facial expressions of emotion (happy versus fearful ) may be more salient feature than vocal tone (rising versus falling \201 nal intonation) to children a See Birnie et al. (Chapter 12) and Cohen et al. (Chapter 52) for further discussion. by their variability (e.g. each cultural and communicative context is somewhat diff erent), specifi city (e.g. pain experience occurs to a specifi c individual, in a specifi c situat ed context, at a specifi c time in his/her life), multiplicity (e.g. multiple cultural and com- municative factors are operating simultaneously, interacting with each other, and medi ating pain experiences), and time sensitivity (e.g. immediately preceding talk may infl uen ce subsequent pain responses). Rather than creating checklist inventories, clinicians can d evelop observational and interview tools to consider the mul- tiple and simultanous factors that infl uence pain. It is fundamental that clinicians become aware of their own cultural biases, learn that culture, ethnicity, and race cannot be assumed just by looking at the p atient, and that no cultural recipe can substitute observing the patient and listening to h im/her. Case example In a biopsychosocial approach to pediatric pain, eliciting chil- dren \200\231s (and parent s \200\231) pain accounts is fundamental but chal- lenging. Clinicians have two interlocuto rs at any given time, parents can take over the conversation, and disagreements arise betwe en parents and children. Th ere are small, practi- cal communicative strategies to overcome these challenges (Clemente, 2009; Clemente et al., 2008, 2012). In the following case, a 1 2-year-old girl with recurrent stomach pains produces an account. Th e clinician uses a var iety of strategies to support and encourage her. Th e clinician uses a question preface (li nes 1 \200\22311) and broad open-ended questions and prompts (lines 13, SECTION 3 social and psychological basis of pediatric pain 108 Acknowledgements I would like to express my gratitude to my postdoctoral advi- sor Dr Lonni e K. Zeltzer at the D. Geff en School of Medicine at UCLA, and to Dr Carl von Baeyer, my ad visor in the PICH (Pain in Child Health) Research Strategic Training Program of the Canadia n Institutes of Health. My participation as an inter- national post-doctoral trainee in the PICH program was made possible by the generous support of the Mayday Fund. I also wish to thank Dr Bonnie Stevens for her many contributions to this chapter and to Dr Marcia Meldrum , Dr Maria Katz, Mary- Caitlyn Valentinsson, and Eugene Danyo for their meticulous reading of this chapter. 16, 22, 28, 33). When broad questions are met with prolonged silence (lines 26 and 35), the clinician retains the girl as respond- ent by asking questions that require only a yes/no answer (lines 36, 39 \200\22341). Despite her many silences and pauses, the clinician has g iven the girl ample time to answer. At the same time, giv- ing ample time and broad directi ons have the risk that the child may get lost, which occurs in lines 18 to 20. In eliciting children \200\231s pain accounts, a balance may be required between giving not enough guid ance (e.g. using broad questions that do not con- strain patients \200\231 accounts but may result in disoriented patients who do not know what the clinician wants to hear) and too m uch guidance (e.g. narrow questions that constrain patients \200\231 answers to merely \200\230yes/no \200\231) (Figure 11.1 ). References Abu-Saad, H. (1984a). Cultural components of pain: the Arab-American child. Issues Compr Pediatr Nurs , 7 ( 2 \200\2233 ), 91 \200\22399 . Abu-Saad, H. (1984b). Cultural components of pain: the Asian-American 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 3 4 35 36 37 38 39 40 41 42 DOC: Nice to meet you too. (0.5) allo Madame?, (0.3) nice to meet you, (1.1) so I read through y our medical records, and reviewed your questionnaires, O:h okay. I wanted to know a little about what s been going on from your point of view. (0.6) what brings yout here. (1.8) Um (that I don t feel good)? Okay, keep going. (0.5) U::m (2.1) um (0.5) you re gonna try to help me? hh yea that s t [rue:. [h Tell me about not feeling good. (0.7) h um (0.5) I don t feel good a lotta times?, (1.5) uh:: (1.3)what else. Okay whaddya mean by not feeli ng good. (0.6) Uh my stomach hurts?, (0.3) Oka:y, (0.6) tell me about your stomach hurting. (1.2) hh you have Crohn s. Correct, Yeah. (0.6) And you were diagnosed (1.0) you had st omach aches when you were three. Right? Yeah. child. Child Health Care , 13 (1), 11 \200\22314 . Abu-Saad, H. (1984c). Cultural group indicators of pain in children. Matern DOC: Child Nurs J , 13 (3), 187 \200\223196 . Abu-Saad, H. (1990). Toward the development of an instrument to assess pain in children: Du tch study. In D. C. Tyler and E. J. Krane (eds) Pediatric pain. advances in pain research a nd therapy , vol. 15 , pp. 101 \200\223106 . New York: Raven Press. DOC: MOM: DOC: Abu-Saad, H. 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Physiological, self-report, and behavioral ratings of pain in three to seven year old African-American and Anglo- American children. Unpublished 9540967, Univ ersity of Miami, United States \200\224Florida. DOC: => => PAT: Bonica, J. J., and Loeser, J. D. (2001). History of pain concepts and therapies. In J. D. L oeser (ed.) Bonica \200\231s management of pain (3rd edn), pp. 3 \200\22316 . Philadelphia, PA: Lippincott Williams & Wilkins. Figure 11.1 Communication between the doctor (DOC), mother (MOM), and patient (PAT). Reprin ted from Social Science and Medicine , Volume 66, Issue 6, Ignasi Clemente, Seung-Hee Lee a nd John Heritage, Children in chronic pain: Promoting pediatric patients \200\231 symptom a ccounts in tertiary care, pp. 1418 \200\2231428, Copyright 2008, with permission from El sevier, http://www.sciencedirect.com/science/journal/02779536 Carter, B. (2002). Chronic pain in childhood and the medical encounter: professional ventri loquism and hidden voices. 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Pedro, H., Barros, L. S., and Moleiro, C. (2010). Brief report: parents and nurses \200\231 behaviors associated with child distress during routine immunization in a portuguese popul ation. J Pediatr Psychol , 35 (6), 602 \200\223610 . Williams, D. A. and Organizing Committee of the Pain Disparities Special Interest Group of the American Pain Society (2005). Racial and ethnic identifi ers in pain management: the im portance to research, clinical practice, and public health policy. Am Pain Soc Bull , 15 (2 ), 9 \200\22310 . Zatzick, D. F. and Dimsdale, J. E. (1990). Cultural variations in respons e to Pfeff erbaum, B., Adams, J., and Aceves, J. (1990). Th e infl uence of culture on pain in A nglo and Hispanic children with cancer. J Am Acad Child Adolesc Psychiatry , 29 (4), 642 \200\223647 . Pillai Riddell, R. R., Stevens, B. J., Cohen, L. L., Flora, D. B., and Greenberg, S. (2007) . Predicting maternal and behavioral measures of infant pain: the relative contribution of maternal factors. Pain , 133 ( 1 \200\2233 ), 138 \200\223149 . Post, L. F., Blustein, J., Gordon, E., and Dubler, N. N. (1996). Pain: ethics, culture, and informed consent to relief . J Law Med Ethics , 24 , 348 \200\223359 . Pillai Riddell, R. R., Horton, R. E., Hillgrove , J., and Craig, K. D. (2008). Understanding caregiver judgments of infant pain: contrasts of parents, nurses and pediatricians. Pain Res Manag , 13(6), 489 \200\223496. painful stimuli. Psychosom Med , 52 , 544 \200\223557 . Zeltzer, L. K. and LeBaron, S. (1985). Does ethnicity constitute a risk factor in the psych ological distress of adolescents with cancer? J Adolesc Health Care, 6, 8 \200\22311 . Supplementary online materials Figure 11.2 Selected list of publications Pillai Riddell, R. R., and Racine, N. (2009). Assessing pain in infancy: the caregiver context. Pain Res Manag , 14 (1), 27 \200\22332 . CHAPTER 12 Families and pain Kathryn A. Birnie , Katelynn E. Boerner , and Christine T. Cha mbers Introduction Th e family has long been acknowledged as an important social context where ch ildren learn about and receive support for their pain. When a child is in pain, it is the f amily who is responsible for the initial pain assessment and seeking appropriate evaluation and care. Families may inadvertently encourage the expression of pain and play a critical role in infl uencing their children \200\231s ability to cope with pain, both positively an d negatively. Having a child in pain can also pose signifi cant personal, familial, and eco nomic strains. Th erefore, consideration of the family is absolutely critical in the unders tanding of factors involved in children \200\231s acute and chronic pain experiences (McGra th, 2008). A concentration of research has continued since the last comprehensive review on the topic was published (Chambers, 2003). Th is chapter considers relevant theoretical mod els and summarizes current major research themes regarding the role of the family in both a cute and chronic pediatric pain. Two illustrative case examples are provided and key areas for future research are identifi ed. functioning, and successful coping. Th e model was expanded by Evans and colleagues to more clearly delineate the specifi c contri- butions of various child and parent pain and funct ioning variables (Evans et al., 2008ab). Th is theoretical framing provides a basis for emp irical work on the role of the family described in the following sections. Acute pain: families and pain Case example Ryan is an 8-year-old boy who requires frequent blood work for monitoring of an endocrine d isorder. He experiences consid- erable distress in the days leading up to his blood work. I n the past he has needed to be restrained by one of his parents and/ or a member of the med ical staff . During the procedure Ryan \200\231s mother is visibly very anxious and tries t o comfort him by say- ing \200\230You \200\231ll be okay. It will be over soon \200\231. A t the last appointment, Ryan \200\231s resistance was so strong that the medical staff were una- ble to complete the procedure. Ryan \200\231s parents and medical staff have become i ncreasingly frustrated with his behavior and have begun to avoid telling him in advance whe n he will need blood work, further increasing Ryan \200\231s distress and distrust around p rocedures. Ryan \200\231s endocrinologist refers him and his family to the Pediatric Health Psychology Service, where Ryan receives instruction in cognitive-behavioral pain managemen t coping strategies, including distraction and deep breathing. His parents learn how they c an best coach Ryan during the procedure, includ- ing prompting him to use deep breathing an d use of distracting talk. Th e family, in collaboration with Ryan and the psychologist, de velop a plan for preparing him for procedures (i.e. deciding how much advance notice Ryan n eeds for procedures) and for rewarding him for his hard work aft er procedures (i.e. going to get an ice cream cone). Th e family also learns about the value of using topical anesthe tics, such as EMLA , as part of his pain management plan. Th eoretical frameworks: families and pain Recent work has situated family factors and rela tionships as one of many important determinants in a biopsychosocial formulation of pain co mmunication (Hadjistavropoulos et al., 2011). Other broader theories related to parent \200 \223child interactions and the family environment have been applied to the pain context and have also guided research in the fi eld; most notably operant conditioning/ social learnin g theory (Bandura, 1977), theories of family systems (Turk et al., 1987), and attachment (P orter et al., 2007). Several pain-specifi c theories have also been proposed, such as the e mpa- thy model for others \200\231 pain (Goubert et al., 2005). An integrative model of parent and family factors in pediatric pain was proposed by Palermo and Chambers (2005). Th is model (Figure 12.1 ) emphasizes the importance of multiple leve ls of fam- ily assessment, and situates individual parenting variables (e.g. parenting styl e, parental reinforcement) within a broader context of dyadic variables (e.g. quality of pa rent \200\223child interaction), embed- ded within the global familial environment (e.g. fa mily function- ing). Th e model highlights reciprocal interactions of individual child and parent factors, with dyadic (parent \200\223child), and familial levels in infl uencing chi ldren \200\231s reported pain severity, associated Parental assessment of acute pain Children experience numerous acute painful events across child- hood, typically in the form of everyday minor injuries (Fearon et al., 1996). Oft en , it is the parent who assesses the child \200\231s pain and SECTION 3 social and psychological basis of pediatric pain 112 Family level variables (e.g., family environment, overall functioning) Pain Dyadic variables (e.g., parent-child interaction) Possible moderators/mediators: Child gender Child emotional symptoms Child age and developm ental status Child coping Parental pain history Individual variables (e.g., parenting style, parental reinforcement/ solicitousness) Figure 12.1 Integrative model of parent and family factors in pediatric pain. Reproduced fr om Palermo, T. M. and Chambers, C. T., Parent and family factors in pediatric chronic pain and disability: An integrative approach, PAIN , Volume 119, Issues 1 \200\2233, pp. 1 \200\2234, 2005. Th is \201 gure has been reproduced with permission of the International Association for the Study of Pain (IASP). Th e \201 gure may NOT be reproduced for any other purpose without permission. Functional Disability makes decisions regarding management. Children also frequently experience painful medical p rocedures, either for routine immu- nizations or as a result of diagnostic and/or treatment procedures (Stevens et al., 2011). While health professionals are involved in assessing th e child \200\231s pain in the medical setting, it is typically the parent who assumes the p rimary role in assessing their child \200\231s pain. Health professionals frequently rely o n parents to provide informa- tion relevant to pain assessment, for example, the extent to which the child \200\231s current (pain) behavior diff ers from their usual behav- iour. Th is information is particularly important when child self- report is not available. potential to signifi cantly impact children \200\231s later health care usage (Pate et al., 1996). Parent variables have played a critical role in children \200\231s coping and distr ess during painful medical procedures. It is now well accepted that parents should be prese nt with their child during painful medical procedures, and the focus of research is on how and why parents \200\231 behaviors during medical procedures relates to their children \200 \231s pain experiences. Blount and colleagues (Blount et al., 1990, 1991, 1997) investi- gated the relationship bet ween parent behaviors and child distress and coping by providing detailed coding of child a nd parent verbal- izations during painful medical procedures. Specifi c parent behav- iours are associated with decreases or increases in child distress, respectively classifi ed as \200\230coping promoting \200\231 or \200\230distress promot- ing \200\231. Behaviors cla ssifi ed as \200\230coping promoting \200\231 included non- procedural talk, suggestions o n how to cope, and use of humor. A well-established, but seemingly, counterintuitive relati onship between several parent behaviors and child distress was identi- fi ed (e.g. empathy, reassurance). Reassurance is the most common parent behavior exhibited during painful proc edures (Cohen et al., 2002); yet it has consistently been linked to higher levels of child pain and distress, both in clinical and experimental research (Chambers et al., 2002; Taylo r et al., 2011). Th e specifi c mechanisms through which reassurance promotes child distres s and pain dur- ing acute painful medical procedures are not known; however, it appears tha t parental reassurance serves as a signal to the child that the parent is anxious, thereby triggering distress and pain in the child (McMurtry et al., 2006). Children report higher f ear during parental reassurance than during parental distraction, and perceive their parent s as being fearful or worried when they are providing reassurance to the child, especially when it is off ered with a fear- ful facial expression and in a rising tone, indicative of uncertainty (McMurtry et al., 2010). Parents are typically asked to provide observer ratings using self- report pain assessment tools used with children (Stinson et al., 2006). Parents generally underestimate their chil dren \200\231s pain, although the reasons for this are not clear (Chambers and Craig 1999; Chambers et al., 1998; Goubert et al., 2009; Kelly et al., 2002; St Laurent- Gagnon et al., 1999). However, parents are generally more accurate in their estimation of children \200 \231s pain as compared to health profes- sionals, including physicians and nurses (Boerner et al., 2013). Th e extent that parents and children catastrophize about the child \200\231 s pain may play an important role in parental pain assessment. In parents, higher levels of pain catastrophizing have been related to higher child-pain ratings by parents, and better agreement between par- ent and child pain ratings (Goubert et al., 2009). In children, low er levels of pain catastrophizing have been related to better agreement in parent \200\223c hild pain ratings (Vervoort et al., 2009). Some situations may increase the challenge of pa in assessment for parents. For example, while parents are relatively good at detecting when their children are genuinely experiencing or pretending to have pain, they have diffi cult y in accurately detecting when their children are suppressing pain (Larochette et al., 2006 ). More research is needed examining the various psychological and contextual factors that infl uence parent acute pain assessment and to distill this work into measures and approach es maximizing parents \200\231 ability to provide important information about pain assessme nt.