Parental assessment of pain coping in individuals with intellectual and developmental disabilities

Research in Developmental Disabilities 32 (2011) 1564–1571

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Research in Developmental Disabilities

Parental assessment of pain coping in individuals with intellectual and developmental disabilities Chantel C. Burkitt a,b,c,*, Lynn M. Breau b,d, Marc Zabalia e,1 a

Department of Psychology, Saint Mary’s University, 925 Robie Street, Halifax, Nova Scotia, Canada B3H 3C3 Centre for Pediatric Pain Research, IWK Health Centre, 5850/5980 University Avenue, PO Box 9700, Halifax, Nova Scotia, Canada B3K 6R8 c Department of Educational Psychology, University of Minnesota, 56 East River Road, Minneapolis, MN 55455, USA d School of Nursing & Department of Pediatrics, Dalhousie University, 5850 College Street, Halifax, Nova Scotia, Canada B3H 4H7 e Laboratoire de Psychologie des Actions Langagie`res et Motrices, Universite´ de Caen, Basse-Normandie, Esplandade de la Paix, 14000 Caen, France b

A R T I C L E I N F O

A B S T R A C T

Article history: Received 23 December 2010 Received in revised form 26 January 2011 Accepted 27 January 2011 Available online 4 March 2011

Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles and how coping relates to individual factors. Seventy-seven caregivers of children and adults with IDD reported on coping styles using the Pediatric Pain Coping Inventory (PPCI), pain behaviour using the Non-Communicating Children’s Pain Checklist— Revised (NCCPC-R), illness-related interactions using the Illness Behaviour Encouragement Scale (IBES) and past pain experience using the Structured Pain Questionnaire. Scores were compared across mental ages and interactions between pain coping and the other factors were explored. A Multivariate Analysis of Variance (MANOVA) by mental age group (‘4 years’, ‘5–11 years’ and ‘12 years’) revealed that those in the ‘5–11 years’ mental age group used more coping styles than those in the ‘4 years’ mental age group, and those in the ‘12 years’ group used more cognitively demanding coping styles than the other two groups (F(10,130) = 2.68, p = .005). Seeking Social Support (r = .39, p = .001) and Catastrophizing/Helplessness (r = .33, p < .01) coping styles were significantly related to a greater display of pain behaviour. Those with younger mental ages, who Seek Social Support or Catastrophize, also displayed more pain behaviour, which may be an attempt to seek external resources when pain is beyond their ability to deal with independently. ß 2011 Elsevier Ltd. All rights reserved.

Keywords: Pain coping Intellectual disability Mental retardation Developmental disability Discomfort

1. Introduction While research has increased our ability to assess pain in people with intellectual and developmental disabilities (IDD), aspects of the multidimensional pain experience, such as coping, have been relatively neglected. Pain coping is considered one of the most significant behavioural contributions to outcomes, functioning, and adjustment in both children and adults (Boothby, Thorn, Stroud, & Jensen, 1999; Hermann, Hohmeister, Zohsel, & Ebinger, 2007).

* Corresponding author at: 250 Education Sciences Building, 56 East River Road, Minneapolis, MN 55455, USA. Tel.: +1 651 724 8212; fax: +1 612 624 8241. E-mail addresses: [email protected] (C.C. Burkitt), [email protected] (L.M. Breau), [email protected] (M. Zabalia). 1 Tel.: +33 02 31 56 55 28. 0891-4222/$ – see front matter ß 2011 Elsevier Ltd. All rights reserved. doi:10.1016/j.ridd.2011.01.050

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1.1. Pain coping styles Specific pain coping styles have become apparent through research with typical children (Bennett-Branson & Craig, 1993; Pillai Riddell, Badali, & Craig, 2004; Thastum, Herlin, & Zachariae, 2005). These studies demonstrate that active strategies such as Distraction, Cognitive Self-Instruction, and Problem Solving are considered optimal and may be the most helpful in the management of pain. Passive strategies include Catastrophizing/Helplessness and Seeking Social Support, and are thought to be disadvantageous because they increase the negative consequences associated with pain (Bennett-Branson & Craig, 1993; Piira, Hayes, Goodenough, & von Baeyer, 2006). The way typical children cope with pain changes as they develop into adulthood (Van Cleve et al., 2004). Younger children will attempt different methods of coping until something works or until they have exhausted their resources. Older children use fewer strategies and tend to use more cognitively demanding coping styles, such as positive self-statements (Lynch, Kashikar-Zuck, Goldschneider, & Jones, 2007). There seems to be no differences in the coping strategies used by young boys compared to young girls; however, adolescent females use significantly more types of coping strategies than adolescent males. Adolescent males tend to use more distraction techniques and adolescent females tend to Seek Social Support in order to cope (Van Cleve et al., 2004). 1.2. Pain coping specific to individuals with IDD Two studies have examined pain coping in individuals with IDD; both focussed on children. Fanurik, Koh, Schmitz, Harrison, and Conrad (1999) asked parents about their child’s coping during a past needle stick and found that individuals with mild to moderate impairment showed more coping behaviours than individuals with severe or profound impairment. Zabalia and Duchaux (2007) used the Pediatric Pain Coping Inventory (PPCI; Varni et al., 1996) to ask children with IDD how they coped with pain. The authors concluded that children with IDD were more likely than typically developing children to Seek Social Support. Zabalia and Duchaux (2007) suggested that this may be because Seeking Social Support is more adaptive for these children when they may not have the mental ability to use more cognitively demanding coping strategies. 1.3. Specific aims This study explores the coping behaviours of children and adults with IDD. To be inclusive of non-verbal individuals we utilized parent/caregiver reports. Parent report of their child’s pain has been shown to be accurate (Spagrud et al., 2008), suggesting their report of pain coping is likely also accurate. 1.4. Hypotheses First, we expected individuals with IDD would use multiple coping styles and would favour Social Support Seeking, based on Zabalia and Duchaux’s (2007) finding that individuals with IDD may Seek Social Support more frequently. Second, we expected coping styles would vary depending on mental age but not chronological age. Although, Lynch et al. (2007) and Van Cleve et al. (2004) found that chronological age was associated with changes in coping style for typically developing children, mental age and not chronological age is indicative of cognitive ability for individuals with IDD. Further, Fanurik et al. (1999) found that individuals with IDD who had greater cognitive ability were reported to cope better with pain. Third, we expected those who use passive coping styles (i.e. Catastrophizing/Helplessness, Seeking Social Support) would typically show more overt pain behaviour as scored on the Non-Communicating Children’s Pain Checklist-Revised (NCCPC-R; Breau, McGrath, Camfield, & Finley, 2002). This was expected because (1) typical children who use passive coping styles have a more negative pain experience (Varni et al., 1996), which could lead to more pain behaviour and (2) Seeking Social Support and Catastrophizing necessitate communicating that one has pain, including non-verbal actions (Craig, 2009). Finally, we expected that individuals with more prior pain experience would use more active coping styles because, like typical children, individuals with IDD may learn to cope more effectively with more experience (Van Cleve et al., 2004). 2. Materials and methods 2.1. Participants and data collection Participants were 78 primary caregivers (parent/step-parent/guardian) of individuals diagnosed with IDD. The caregivers completed all measures and provided informed consent. The individuals with IDD had all taken part in previous studies lead by one of the authors in which their diagnosis of an IDD was confirmed through review of medical records or testing. Thus, this information was not collected as part of this study, with the exception of one question regarding caregiver’s estimate of the individual’s current mental age. All individuals with IDD had a chronological age greater than 3 years, due to limitations in confirming a diagnosis of IDD below this age in previous studies. This study was approved by the hospital’s Research Ethics Board.

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2.2. Measures All measures were sent to participants by mail and returned by mail. Mailed invitations were followed by telephone calls by the first author to provide information about the study prior to entry. The Pediatric Pain Coping Inventory (PPCI)—parent version (Varni et al., 1996) was used to assess parent’s perception of pain coping mechanisms used by their child. The PPCI includes questions regarding what the child thinks or does when in pain and how frequently these strategies are used. The PPCI has shown good internal consistency and validity and has been used with multiple child populations (Sawyer et al., 2005; Van Cleve et al., 2004; Varni et al., 1996), including children with IDD (Zabalia & Duchaux, 2007). The PPCI-parent version is simple to use. The measure has 41 items, each of which are rated 0 for ‘‘Never’’, 1 for ‘‘Sometimes’’, or 2 for ‘‘Often’’ depending on how frequently that statement fits for the individual. Total score on the measure could range from 0 to 82; however, the score can be calculated within each coping style to determine how much each individual uses Cognitive Self-Instruction, Problem Solving, Distraction, Seeks Social Support, and Catastrophizing/ Helplessness, as a means to cope. Because the PPCI is designed for children as young as age 5, the items are often appropriate for those with developmental delays and are observable by parents. For example, the PPCI asks whether the individual ‘‘gets angry, irritable or cranky’’ and whether they ‘‘sleep it off’’. A demographic questionnaire was used to collect information regarding the chronological age and gender of the individual with IDD. Caregivers also provided a current estimate of the mental age of the individual with IDD. Previous research by Fanurik et al. (1999) has shown that parents are successful at calculating their child’s mental age by comparing the parent’s estimates with the child’s medical record reviews (Fanurik et al., 1999). The Non-communicating Children’s Pain Checklist—Revised (NCCPC-R) is a 30 item observational pain scale that was completed by caregivers to record everyday pain responses of the individual with IDD (Breau et al., 2002). This tool has seven domains (vocal, social, facial, activity, body and limbs, physiological and eating/sleeping) within which, caregivers record specific overt pain behaviours such as: moaning, furrowed brow or breath holding. The NCCPC-R was developed in the 1990s and tested with non-verbal children and adults with a variety of disabilities (Breau et al., 2002; Burkitt, Breau, Salsman, Sarsfield-Turner, & Mullan, 2009). Studies suggest the NCCPC-R is valid and reliable with varying groups of children with IDD across multiple circumstances (Breau, Camfield, McGrath, & Finley, 2003; Breau, Camfield, McGrath, Rosmus, & Finley, 2001; Breau et al., 2002). In this study, caregivers reported their family member’s ‘‘typical’’ behaviour during pain. Research suggests that parent report of children’s ‘‘typical’’ pain response, using the NCCPC-R, is highly predictive of responses observed during subsequent pain episodes (Breau et al., 2002). The Structured Pain Questionnaire was completed by caregivers to obtain a comprehensive profile of pain experiences within the last 3 months (Perquin et al., 2000). It assesses pain location, frequency (less than once a month, once a month, 2– 3 times a month, once a week, 2–6 times a week, each day), duration (less than 4 weeks, 4 weeks–3 months, more than 3 months) and intensity of worst pain (0–100 rating scale). It has previously been used for children aged 0–18, with parents reporting for children less than 8 years (Perquin et al., 2000). This brief pain history enabled us to determine if there were relationships between pain parameters and the coping style used by individuals with IDD. 2.3. Data analyses Data were analyzed using SPSS 15.01. Alpha was set at .05. Because this study is among the first to study pain coping in individuals with IDD, we felt it was prudent to take a conservative approach to assessing significance to avoid spurious findings. Although actual p-values are reported, Bonferroni corrections were used for sets of analyses to determine significance. With a = .05, tables prepared by Stevens indicated .80 power for Multivariate Analyses of Variance (MANOVAs; Stevens, 1996). For correlations, power exceeded .80 to detect a medium size effect. Wilks Lambda was used for multivariate analyses. Measures were completed by 78 caregivers: 60 mothers, 11 fathers, 6 caregivers, and 1 foster mother (hereafter referred to collectively as ‘‘caregivers’’). One participant withdrew. In some cases, the 77 participants were missing more than 10% of one specific measure and were excluded from analyses of that measure only; five participants were excluded from mental age analyses, nine from analyses related to the duration of past pain and five from analyses of the intensity of past pain. When less than 10% of item scores on a questionnaire were missing we used the mean of that item to replace the missing value. Preliminary analyses explored potential confounders. A MANOVA to assess recency effects examined whether caregiver report of their family member’s pain in the past 3 months affected PPCI subscale scores. A second MANOVA examined whether gender affected PPCI subscale scores. 2.4. Hypotheses We expected that individuals with IDD would use multiple coping styles, but would have highest scores for Social Support Seeking. This hypothesis was tested using a MANOVA to determine if there were significant differences between the five subscales of the PPCI. Post hoc comparisons were made using matched sample t-tests to examine pairwise differences. Because subscales include different numbers of items, scores were standardized prior to submitting them to this analysis.

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We expected that the coping style of the individual with IDD would vary depending on mental age, but not chronological age. Mental ages were grouped according to recognized ages where pain reaction changes; ‘4 years’, ‘5–11 years’ and ‘12 years’ (Sawyer et al., 2005). A MANOVA was conducted on PPCI subscale scores as a function of mental age group. Univariate effects and post hoc t-tests were used to examine pairwise differences. To determine which coping styles each age group used the most, one-way Repeated Measures ANOVAs, followed by matched sample t-tests, determined whether subscale scores differed within age groups. Mental age effects on NCCPC-R and IBES total scores were examined with two-tailed Pearson’s correlations, as was the relation between the PPCI and chronological age. We expected that individuals with IDD who had higher scores for the Catastrophizing/Helplessness and Seeking Social Support PPCI subscales would show more overt pain behaviour on the NCCPC-R. Pearson’s partial correlations, controlling for mental age, were conducted to determine the relation between the NCCPC-R total score and PPCI subscales. Partial correlations also examined the relation between NCCPC-R subscale scores and PPCI subscale scores to determine whether increases in specific types of pain behaviours were related to specific coping styles. We expected that individuals with more prior pain experience would show more pain coping behaviours overall and more active pain coping in particular. A partial correlation, controlling for mental age, examined the relation between pain intensity in the previous 3 months and PPCI Total Score. MANOVAs were used to determine the effects of the frequency of pain and duration of pain on PPCI subscale scores. 3. Results 3.1. Demographics The individuals with IDD (39 male) ranged from 4 to 39 years (M = 16.6; SD = 5.8) with mental ages of <1 month to 26 years (M = 7.3; SD = 4.9). Sixty-eight of the 77 people with IDD had experienced pain in the prior 3 months. Of those, 32 experienced pain weekly or more and 10 people experienced pain daily. Fifty-nine caregivers provided a response to the question asking about the cause of the individual’s ‘‘worst pain ever’’; of these, responses included: abdominal pain (n = 16), limb pain (n = 11) and headaches (n = 8). Cuts/bruises and back, teeth, and throat pain were reported by 2–3 individuals each. Mean intensity of the individuals’ ‘‘worst pain ever’’ ranged from 2 to 100/100 (M = 51.6, SD = 29.0). PPCI subscale scores by gender, age, pain presence, duration and frequency are shown in Table 1. 3.2. Preliminary analyses The NCCPC-R was used to assess which pain behaviours are typically seen (n = 77). Mean scores, reflecting the frequency with which items are seen during a typical episode of pain were highest for facial (M = 6.23, SD = 4.86), body and limb (M = 6.03, SD = 4.26) and social subscales (M = 5.83, SD = 3.55). Items from the physiological (M = 4.24, SD = 3.69), Table 1 Mean and Standard Deviation categorized for all participants, gender, mental age, pain presence, duration and frequency across each subscale of the Pediatric Pain Coping Inventory (PPCI). Cognitive Self-Instruction M(SD) All participants (n = 77) Gender Male (n = 39) Female (n = 38) Estimated Mental Agesa ‘4 years’ (n = 21) ‘5–11 years’ (n = 37) ‘12 years’ (n = 14) Pain Pain (n = 67) No Pain (n = 10) Durationb <4 weeks (n = 43) 4 weeks–3 months (n = 6) >3 months (n = 19) Frequency
Problem Solving M(SD)

Distraction M(SD)

Seeks Social Support M(SD)

Catastrophizing/ Helplessness M(SD)

PPCI Total Score M(SD)

2.42(2.73)

6.85(3.94)

3.03(2.81)

5.77(3.26)

4.08(2.11)

22.15(11.44)

2.49(2.76) 2.23(2.78)

6.45(3.94) 7.02(4.03)

2.74(2.62) 3.43(3.06)

5.63(3.05) 5.91(3.62)

4.00(2.04) 4.03(2.01)

21.31(10.87) 22.63(12.38)

.57(1.08) 3.30(2.93) 3.07(2.67)

4.81(2.80) 8.32(3.92) 6.35(4.05)

1.29(1.74) 4.08(2.75) 3.07(3.08)

4.14(2.37) 6.70(3.32) 5.93(3.52)

3.38(1.40) 4.65(2.25) 3.71(2.36)

13.91(6.61) 27.05(10.40) 22.14(13.10)

3.50(2.27) 2.25(2.78)

8.30(3.40) 2.89(2.58)

3.90(4.04) 2.89(2.58)

5.90(3.10) 5.75(3.31)

3.80(1.81) 4.13(2.16)

25.40(11.59) 21.63(11.43)

3.05(3.09) .33(.82) 1.59(1.50)

7.58(3.98) 6.67(2.42) 6.06(3.91)

3.70(3.13) 1.50(1.22) 2.18(1.70)

5.78(3.35) 6.50(2.81) 6.35(3.16)

4.15(2.23) 4.17(1.72) 4.11(2.20)

24.25(12.40) 19.16(5.19) 20.29(9.56)

2.39(2.73) 2.75(3.15) 3.58(3.29) 3.25(2.87) 2.13(2.53) 1.11(1.69)

7.04(3.87) 5.13(4.42) 6.67(4.54) 10.00(4.69) 7.19(3.37) 6.67(3.50)

3.70(3.82) 2.00(1.51) 2.75(2.53) 3.50(1.91) 3.69(2.36) 1.56(1.24)

5.35(2.96) 4.38(2.72) 5.08(3.37) 9.00(2.94) 6.63(3.63) 6.33(3.24)

4.30(2.20) 2.88(1.13) 3.58(2.57) 5.00(3.16) 4.38(2.00) 4.44(1.51)

22.78(12.49) 17.13(8.73) 21.67(13.41) 30.75(14.82) 24.00(10.51) 20.11(6.77)

Five participants did not estimate mental age. Nine participants did not report pain duration.

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sleeping and eating (M = 3.17, SD = 2.25) and activity subscales (M = 1.54, SD = 1.70) were reported to occur less frequently. Whether the child had or had not had pain in the 3 months prior to the study did not affect PPCI Total Scores (F(5,71) = 1.24, p = .30). This suggests no recency effect on caregiver recall of coping behaviours due to having observed their child in pain more recently. A MANOVA indicated PPCI Total Score was not affected by gender (F(5,71) = .60, p = .70). Further analyses were done with gender collapsed. 3.3. Hypotheses We expected that individuals with IDD would use multiple coping styles and might favour Social Support Seeking. A significant main effect was found across subscores on the PPCI (F(5,73) = 66.50, p < .001, n = 77). Post hoc pairwise comparisons revealed scores for Problem Solving, Seeking Social Support and Catastrophizing/Helplessness were all significantly greater than Cognitive Self-Instruction and Distraction scores (Table 2), reflecting the fact that the latter two coping styles were used less. We expected that the coping style of the individual with IDD would vary with mental age but not chronological age. There were no significant relationships between chronological age and total scores on the PPCI (r = .21, p = .07), indicating coping behaviour did not vary with chronological age. However, as expected, a significant multivariate effect of mental age group was found for PPCI Total Scores (F(10,130) = 2.68, p < .005). Univariate effects of mental age were significant for Cognitive SelfInstruction (F(2,69) = 8.59, p < .001), Problem Solving (F(2,69) = 6.40, p = .003), Distraction (F(2,69) = 7.92, p = .001) and Seeking Social Support (F(2,69) = 4.53, p = .01) subscales but non-significant for Catastrophizing/Helplessness. Post hoc analyses indicated the ‘4 years’ mental age group used fewer coping strategies than the ‘5–11 years’ mental age group: Cognitive Self-Instruction (unequal variances; t(50.03) = 5.08, p < .001), Problem Solving (t(56) = 3.62, p = .001), Distraction (t(56) = 4.12, p < .001), and Seeking Social Support (t(56) = 3.10, p < .01). However, when controlling for multiple comparisons, the ‘4 years’ and the ‘5–11 years’ mental age groups did not differ on Catastrophizing/Helplessness. PPCI subscale scores for ‘5–11 years’ mental age group did not differ significantly from the ‘12 years’ mental age group. After corrections for multiple tests, the ‘12 years’ mental age group used Cognitive Self-Instruction more than those in the ‘4 years’ mental age group (unequal variances; t(15.84) = 3.32, p < .01), However, the two groups did not differ otherwise. In summary, when comparing coping styles between mental age groups, the ‘12 years’ and the ‘5–11 years’ mental age groups did not differ, but the ‘12 years’ mental age group did use more Cognitive Self-Instruction than the ‘4 years’ mental age group. In contrast, the ‘5–11 years’ mental age group used significantly more of all coping styles than the ‘4 years’ mental age group, with the exception of Catastrophizing/Helplessness, which did not differ significantly between the two groups. Coping patterns within age groups were examined next. A MANOVA showed that some coping styles are used significantly more than others by the ‘4 years’ (F(4,17) = 29.98, p < .001) and the ‘5–11 years’ (F(4,33) = 9.58, p < .001) mental age groups. Controlling for multiple comparisons, matched sample t-tests revealed those in the ‘4 years’ and the ‘5–11 years’ mental age groups used significantly more Problem Solving, Seeking Social Support and Catastrophizing/Helplessness than they did Cognitive Self-Instruction and Distraction. After controlling for multiple tests, the ‘12 years’ mental age group did not demonstrate significant overall differences in coping styles (F(4,10) = 5.15, p = .02). However, matched sample t-tests revealed some univariate differences; they used more Problem Solving than Cognitive Self-Instruction and Distraction and they used more Catastrophizing/Helplessness than Distraction (Table 2). Because mental age affected pain coping styles, as seen by the different patterns among the groups’ subscale scores, it was included as a covariate in subsequent analyses. Mental age was not related to total scores on the NCCPC-R (r = .22, p = .06).

Table 2 Matched sample t-tests for total subscale scores and within mental age group differences in subscale scores on the Pediatric Pain Coping Inventory (PPCI). Subscales of the PPCI

Full Sample

Estimated Mental Ages

t

‘4 years’

p

t Cognitive Self-Instruction—Problem Solving Cognitive Self-Instruction—Distraction Cognitive Self-Instruction—Seeking Social Support Cognitive Self-Instruction—Catastrophizing/Helplessness Problem Solving—Distraction Problem Solving—Seeks Social Support Problem Solving—Catastrophizing/Helplessness Distraction—Seeks Social Support Distraction—Catastrophizing/Helplessness Seeks Social Support—Catastrophizing/Helplessness * ** ***

8.85 .38 6.26 6.91 9.30 2.78 1.69 7.90 8.43 .96

Indicates significance at the .05 level after Bonferroni corrections. Indicates significance at the .01 level after Bonferroni corrections. Indicates significance at the .001 level after Bonferroni corrections.

***

<.001 .71 <.001*** <.001*** <.001*** .01* .10 <.001*** <.001*** .34

‘5–11 years’ p

7.70 1.10 5.91 7.97 6.12 1.17 .39 6.02 7.73 1.89

t ***

<.001 .28 <.001*** <.001*** <.001*** .26 .70 <.001*** <.001*** .074

‘12 years’

p 5.37 .26 3.22 3.62 6.00 2.89 2.08 4.62 4.37 .49

t ***

<.001 .79 .003* .001** <.001*** .006 .05 <.001*** <.001*** .63

p 3.58 .91 2.45 2.11 3.59 .54 1.24 2.77 3.87 .42

.003* .38 .03 .06 .003* .60 .24 .02 .002* .68

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We expected that individuals with IDD who used passive coping styles (i.e. Catastrophizing/Helplessness, Seeking Social Support) would show more overt pain behaviour on the NCCPC-R. There was a significant Pearson’s partial correlation between total NCCPC-R scores and Seeking Social Support (r = .39, p = .001) and Catastrophizing/Helplessness (r = .33, p = .005), when mental age was included as a covariate. Non-significant correlations were found for the remaining subscales. Further analyses indicated that those who use Seeking Social Support show significantly more vocal (r = .50, p < .001), social (r = .36, p = .002), and body/limbs (r = .43, p = .003) pain behaviour. Those who use Catastrophizing/Helplessness show significantly more vocal (r = .59, p < .001), and body/limbs (r = .44, p = .002) pain behaviour. We expected that individuals with more prior pain experience would use more adaptive coping styles (i.e. Cognitive SelfInstruction, Distraction, Problem Solving). A Pearson’s Partial correlation between the worst pain intensity in the prior 3 months and each subscale of the PPCI resulted in non-significant results for Cognitive Self-Instruction (r = .002, p = .99), Problem Solving (r = .04, p = .75), Distraction (r = .08, p = .51), Seeks Social Support (r = .20, p = .11), and Catastrophizing/ Helplessness (r = .21, p = .09) when mental age was controlled for. Thus, the use of these strategies was not related to the intensity of the worst pain experience in the previous 3 months of those with IDD. A MANOVA of coping styles as a function of pain frequency in the past 3 months, controlling for mental age (F(5,61) = 1.41, p = .24), revealed a non-significant overall (F(25,228.11) = 1.08, p = .37, n = 77), and univariate effects. Use of coping strategies was not affected by how often the individuals had had pain in the 3 months prior to the study. A MANOVA of coping styles as a function of pain duration (less than 4 weeks, 4 weeks–3 months, more than 3 months), controlling for mental age (F(5,55) = 1.23, p = .31) also revealed a non-significant multivariate effect (F(10,110) = 1.88, p = .06, n = 68). Thus, pain coping was not affected by how many weeks the child had had pain over the past 3 months. 4. Discussion These findings demonstrate that individuals with intellectual disabilities (IDD) show variation in their pain coping styles due to various factors. The importance of mental age was a key result. All coping styles, with the exception of Catastrophizing/Helplessness, were used more by those in the ‘5–11 years’ group than by those in the ‘4 years’ mental age group. This may be because those with a mental age of 5 or more would be more likely to have developed communication and social skills which could facilitate the use of more active coping strategies (Parent, Boisvert, Pare´, Gariepy, & Ayotte, 1995). Interestingly, there were no differences in the way the ‘5–11 years’ and the ‘12 years’ mental age groups coped with pain, and those in the ‘12 years’ mental age group showed only more Cognitive Self-Instruction coping than those in the ‘4 years’ mental age group, but not those in the ‘5–11 years’ mental age group. Although this was a cross-sectional study, this suggests a developmental pattern whereby children use Catastrophizing/Helplessness until they develop more sophisticated mental abilities. They then begin to use other strategies, and continue to use those same strategies despite the fact that they may have developed further in other abilities. The one exception was Cognitive Self-Instruction. The findings here, that differences in Cognitive Self-Instruction were significant between those in the ‘4 years’ mental age group versus those in the ‘12 years’ mental age group, but not those in ‘5–11 years’ versus the ‘12 years’ mental age groups, suggests ongoing development of this pain coping style, but at a pace that does not result in significant between-group differences detectable in this sample. Specifically, that use of this approach begins when those with IDD achieve a school age mental age and continues to develop as more adolescent/adult mental abilities develop. Further research with larger groups could elucidate the trajectory of these changes. Regardless of mental age, Problem Solving and Seeking Social Support were more utilized than Cognitive Self-Instruction or Distraction in this sample. This is likely because Cognitive Self-Instruction and Distraction require more advanced cognitive abilities. This was also reported by Lynch et al. (2007), who found older children in their study, used more cognitively demanding pain coping strategies. Seeking Social Support is thought to be maladaptive in typical children (Zabalia & Duchaux, 2007). However, if one is unable to use more cognitively demanding strategies to cope with pain, it may be an effective choice that results in others taking action to assist with pain. Problem Solving also involves soliciting help with managing the pain, such as asking for medication. This also could be effective if one has limited abilities to cope with pain through self-management techniques such as Distraction and Cognitive Self-Instruction. The relation between pain coping and pain behaviour is also informative. Seeking Social Support and Catastrophizing/ Helplessness were both related to the expression of more pain behaviour as measured by the NCCPC-R. This may reflect two phenomena. First, those who seek help do so by displaying their pain to alert caregivers through vocalizations, body movements and social behaviours such as seeking comfort. Second, those who feel helpless and Catastrophize may also increase their display of pain. The fact that they showed pain only with vocal and body behaviour raises the possibility that this could reflect depressive symptoms, which can be associated with both pain (Weland, Jackson, & Stokes, 2010) and helplessness (Yorbik, Birmaher, Axelson, Williamson, & Ryan, 2004). A look at the data indicates over 80% of caregivers reported their child displayed signs of being withdrawn and interacting less with others. Accordingly, this is an important issue to examine in future studies, as it raises the possibility of comorbid depressive symptoms in those with IDD who have pain that may not be being detected or addressed. Pain coping did not vary by whether the individual with IDD had or had not experienced pain in the past 3 months, or the intensity, frequency or duration of his/her worst pain. This indicates that cognitive and functional ability may limit the development of coping skills. Although people with IDD may have frequent experience with pain, their cognitive limitations may attenuate learning better coping skills as they have those experiences. However, it could also be that caregivers and

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professionals who work with these children may not attempt to instruct this group in self-management of pain as they do typical children, assuming they are not capable. This could also attenuate development of more advanced coping strategies. Our results are in line with previous research by Fanurik et al. (1999) and Zabalia and Duchaux (2007). As did we, Fanurik et al. noted that those with more capabilities displayed more coping. Zabalia and Duchaux found that children were more likely to Seek Social Support; we found the same with the addition that those with IDD are also more likely to use Problem Solving coping styles. This is not surprising since in many cases Problem Solving coping styles (e.g. asking for medicine, asking to be taken to the doctor) include seeking help from others. 4.1. Limitations A limitation of this study is that caregivers reported the mental age of the individual with IDD. Although previous research has shown that caregivers are accurate in their estimations of mental age (Fanurik et al., 1999), it is possible that in this case these estimations are not accurate. This study was based on caregiver report; which was a necessity because many of the people with IDD they care for were unable to communicate verbally. It is possible that parents are unaware of some coping strategies taken by their family member, especially internal forms such as Cognitive Self-Instruction. While examination of correspondence between caregiver report and self-report from severely impaired individuals is impossible, further research examining correspondence between caregiver and self-reports of those with mild to moderate impairments would further support these findings. 4.2. Implications The individuals in this study use Problem Solving, Seeking Social Support and Catastrophizing/Helplessness to cope with pain. These results can help inform caregivers who are attempting to coach those with IDD in how to cope when pain occurs. Cognitive Self-Instruction and Distraction may be too difficult for this group, suggesting they may benefit most from being supported in the coping strategies they are already using as long as those coping strategies are adaptive for the individual. Regardless of the individual’s suspected ability to cope with the pain, caregivers need to be vigilant for behavioural signs of pain and intervene to provide care when needed. It is also possible that these individuals use fewer strategies because they are not instructed in pain coping strategies as their typical peers. For example, parents frequently coach young children to distract themselves during painful events such as needles or minor injuries, or suggest self-instruction strategies such as telling oneself it will be over soon. It may be that parents of those with IDD do not do so. Further research could examine whether an instruction intervention could lead to more use of Distraction and Cognitive Self-Instruction by this group. The current results do indicate, nonetheless, that those with IDD who are at least of a school age mental age are capable of multiple coping strategies. This suggests caregivers or professionals should attempt to teach new approaches when the individual with IDD is displaying coping strategies that appear ineffective. Mental age should be considered when encouraging a coping style. Problem Solving is used across all ages; however, Cognitive Self-Instruction and Distraction strategies would likely be more successful when taught to those with older mental ages. These results suggest that those with IDD who show more pain behaviour may be doing so in efforts to solicit help for their pain. Unfortunately, some research indicates that caregivers may be missing this signal for help, because some caregivers report that their child simply ‘‘over-reacts’’ to pain (Breau, MacLaren, McGrath, Camfield, & Finley, 2003). These results should caution that this behaviour could be a sign of maladaptive coping signifying that the person with IDD feels overwhelmed and helpless in the face of the pain. This behavioural cue may indicate a need to address either the coping style or re-assessment of whether pain management actions have actually been effective. 4.3. Conclusions Individuals with intellectual disabilities, in this study, used various methods to cope with pain, with a stronger emphasis on those that are less cognitively demanding. Their coping efforts were affected by mental age, but not chronological age. Those who are more likely to Seek Social Support or Catastrophize appear to also display more overt pain behaviour, which may reflect an attempt to seek external resources to cope when pain is beyond their ability to deal with using their own abilities. These results provide some insight into the pain experience of those with IDD and can help inform caregivers and healthcare professionals who work with this group. References Bennett-Branson, S. M., & Craig, K. D. (1993). Postoperative pain in children: Developmental and family influences on spontaneous coping strategies. Canadian Journal of Behavioural Sciences, 25, 355–383. Boothby, J. L., Thorn, B. E., Stroud, M. W., & Jensen, M. P. (1999). Coping with chronic pain. In R. J. Gatchell & D. C. Turk (Eds.), Psychosocial factors in pain: Critical perspectives (pp. 343–359). New York: Guilford Press. Breau, L. M., Camfield, C., McGrath, P. J., Rosmus, C., & Finley, G. A. (2001). 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