Adolescent chronic pain: patterns and predictors of emotional distress in adolescents with chronic pain and their parents

Pain 108 (2004) 221–229 www.elsevier.com/locate/pain

Adolescent chronic pain: patterns and predictors of emotional distress in adolescents with chronic pain and their parents Christopher Ecclestona,b,*, Geert Crombezc, Anna Scotforda,b, Jacqui Clincha,b, Hannah Connella,b a

Pain Management Unit, University of Bath, Level 7, Wessex House, Bath BA2 7AY, UK b Royal National Hospital for Rheumatic Diseases, NHS Trust, Bath, UK c Faculty of Psychology and Educational Sciences, Ghent University, Ghent, Belgium

Received 10 June 2003; received in revised form 21 October 2003; accepted 7 November 2003

Abstract Adolescents with chronic pain also report severe disability and emotional distress. A clinical sample of 80 adolescents and accompanying parents were investigated to first measure the extent of distress, and second to investigate the relationships between adolescent distress, parental distress and adolescent coping. Measures of pain intensity, anxiety, depression, disability and coping were obtained from adolescents. Parents completed measures including their own anxiety, depression and parenting stress. Overall, adolescents reported high levels of disability, depression and anxiety, and parents reported high levels of depression, anxiety and parenting stress. Multiple regression analyses revealed that the best predictors of adolescent emotional distress were the extent to which the adolescents catastrophize and seek social support to cope with the pain. There were no clear predictors of parental anxiety or depression but the specific pattern of parenting stress was best predicted by the younger age of the adolescent, the greater the chronicity of the problem, and the greater the extent of adolescent depression. These findings suggest that emotional coping is a critical variable in the distress associated with adolescent chronic pain. It is argued that adolescent emotional coping may best be understood within a relational context of seeking emotional support. q 2003 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved. Keywords: Chronic pain; Adolescence; Parents; Anxiety; Depression; Coping

1. Introduction Pain is frequently reported by children and adolescents (e.g. Fearon et al., 1996; Goodman and McGrath, 1991; Perquin et al 2000a,b). A small but clinically challenging population of children and adolescents become chronic pain patients who report not only pain, but also associated emotional distress and disability (Eccleston and Malleson, 2003; Malleson et al., 2001). In this paper we report on the extent of emotional distress in a clinical sample of adolescent chronic pain patients and their parents. Palermo (2000) reviewed the impact of chronic pain on child and family functioning, finding widespread interruption in tasks of everyday life (e.g. sleep, schooling, peer relations, and physical activity). She also reported that * Corresponding author. Address: Pain Management Unit, University of Bath, Level 7, Wessex House, Bath BA2 7AY, UK. Tel.: þ 44-1225-386439. E-mail address: [email protected] (C. Eccleston).

chronic and recurrent pain had widespread negative effects on emotional functioning. Evidence is amassing for the extent to which children and adolescents who present for treatment of chronic pain, independent of medical diagnosis, report depressive (Kashikar-Zuck et al., 2002; Schanberg et al., 1996), and anxious symptomatology (Smith et al., 2003). A picture is developing of the adolescent with chronic pain who also reports general emotional distress and a heightened sense of vulnerability (Merlijn et al., 2002). How adolescents attempt to cope with chronic pain and disability may be of critical importance to their general mental health. In separate samples of patients with diagnoses of musculoskeletal pain, headache, back pain and fibromyalgia Kashikar-Zuck et al. (2001, 2002) have shown that maladaptive coping is strongly associated with adolescent depression and disability. They characterize maladaptive coping as the frequent use of emotion-focused strategies, both externalizing and internalizing. Using

0304-3959/$20.00 q 2003 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved. doi:10.1016/j.pain.2003.11.008

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a different measure of coping Harding Thomsen et al. (2002) also found that internalizing emotional coping was associated with higher child anxiety and depression. The presence of a child with a chronic painful condition can have adverse effects on siblings (Sharpe and Rossiter, 2002), and on parents (Logan et al., 2002; Streisand et al., 2001). The impact of chronic pain and illness on families has been variously described as a burden (Palermo, 2000), a stress (Hunfeld et al., 2001; Innocenti et al., 1992) and a risk for further problems of adaptation (Wallander et al., 1990). In particular, parents report restrictions in their own lives, unwelcome dependency, marital and financial difficulties, and feelings of hopelessness (e.g. Hunfeld et al., 2002). Even without the presence of a chronic condition, adolescence is reported by parents to be the most difficult period of parenting (Pasley and Gecas, 1984). With a chronic condition, parenting may become stressful and challenging. It is not known which specific aspects of the experience of adolescent chronic pain affects the emotional health of parents. This study was designed (1) to examine emotional distress in adolescent chronic pain patients, with an additional focus on how patients cope with chronic pain, (2) to examine emotional distress in the accompanying parent, with a specific focus on the potential stress of parenting, and (3) to examine the relationship between how adolescents attempt to cope with pain and the potential role of coping on adolescent and adult emotional distress.

2. Method 2.1. Participants Eighty adolescents with chronic pain were referred for assessment at a specialized tertiary care chronic pain management service. Referral was normally to assess the suitability for interdisciplinary treatment (Eccleston et al., 2003). All were consecutive referrals. None refused to participate in the research. Fifty-seven were girls. The mean age of the adolescents was 14.45 years (SD 1.55, range 11 –17 years). Using a chronic pain syndrome diagnostic system (Malleson and Clinch, 2003) the sample was classified as follows: complex regional pain syndrome type 1 ðn ¼ 21Þ; juvenile widespread idiopathic musculoskeletal pain ðn ¼ 19Þ; recurrent abdominal pain ðn ¼ 10Þ; low back pain ðn ¼ 10Þ; chronic headache ðn ¼ 5Þ; juvenile rheumatoid arthritis ðn ¼ 3Þ; sickle cell recurrent pain ðn ¼ 1Þ; and multiple site idiopathic pain ðn ¼ 11Þ: The mean chronicity of the adolescents’ pain was 3.91 years (SD 3.40). On average adolescents had been absent from full time education for 12.26 months (SD 14.78). All patients were accompanied by an adult who was identified as a primary caregiver who adopted a parenting role (parents). Overall, 78 were accompanied by a (step)

mother or (step) father, and two by a grandmother only. Fifty-eight of the parents were married or co-habiting. 2.2. Measures Using a battery of questionnaires a number of constructs were assessed for both adolescents and parents. 2.2.1. Adolescent measures 2.2.1.1. Pain intensity. Adolescents rated their average pain intensity over the previous week on a 10 cm visual analogue scale (VAS; 0 cm, ‘no pain’; 10 cm, ‘the worst pain possible’; Varni et al., 1987). 2.2.1.2. Anxiety. The Spence Children’s Anxiety Scale (SCAS; Spence, 1994) is a self-reported instrument measuring DSM-defined anxiety symptoms in young people. It consists of 36 items (e.g. ‘I feel afraid that I will make a fool of myself in front of people’) to be rated on a five-point scale ranging from 0 (never) to 4 (always). It provides an overall measure of anxiety and six subscales. The measure is well used in adolescent populations and has good validity and reliability. Spence (1998) has provided a good summary of its psychometric properties and useful norms. Of relevance to this study, the total score has concurrent validity in relation to other child report measures of internalizing problems and other measures of child anxiety (Muris et al., 2002). 2.2.1.3. Depression. The Children’s Depression Inventory Short Form (CDI-S; Kovacs, 1981) is a self-report inventory that assesses symptoms of depression in children and adolescents. It has good validity and acceptable reliability. It has also been used in other chronic pain populations, facilitating comparison (e.g. Kashikar-Zuck et al., 2001). It consists of 10 items to be rated on a threepoint scale (0 – 2; e.g. ‘I feel like crying many days’). The raw scores are transformed to age and gender normed T scores (M ¼ 50; SD 10). 2.2.1.4. Disability. The Functional Disability Inventory (FDI; Walker and Greene, 1991) is a self-report inventory for children that measures perceived difficulty in performing activities in the domains of school, home, recreation and social interactions. It consists of 15 items to be rated on a five-point scale (0 –4). It has proven to be reliable and is valid for disability across the range of chronic pain populations (Walker and Heflinger, 1998). 2.2.1.5. Pain coping. The Pain Coping Questionnaire (PCQ) is a 39-item self-report tool especially designed for young people in pain (Reid et al., 1998). It consists of eight pain coping strategies including: (1) information seeking (four items, e.g. ‘find out more information’),

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(2) problem solving (six items, e.g. ‘figure out what I can do about it’), (3) seeking social support (five items, ‘talk to someone about how I am feeling’), (4) positive self-statements (five items, e.g. ‘say to myself, things will be ok’), (5) behavioral distraction (four items, e.g. ‘do something fun’), (6) cognitive distraction (five items, ‘put it out of my mind’), (7) externalizing (five items, e.g. ‘get mad and throw or hit something’), (8) internalizing/catastrophizing (five items, e.g. ‘think that the pain will never stop’). Item scores range from 1 to 5. Although a relatively recent instrument it has been well adopted. Reid et al. (1998) report good validity across the age range of childhood pain and adequate reliability, and other data are available for comparison (e.g. Kashikar-Zuck et al., 2002; Thastum et al., 2001). 2.2.2. Parent measures 2.2.2.1. Anxiety and depression. The Hospital Anxiety and Depression Scale (HAD; Zigmond and Snaith, 1983) is a short self-report screening tool that was developed to indicate anxiety and depressive states in hospital attending populations. It consists of 14 items to be rated on a fourpoint scale (0 – 3). The anxiety subscale consists of seven items (e.g. ‘I feel tense or wound up’) and the depression subscale of seven items (e.g. ‘I feel as if I am slowed down’). It has good internal consistency for both anxiety and depression, and good reliability (e.g. Spinhoven et al., 1997). 2.2.2.2. Parent stress. The Parenting Stress Index/Short Form (PSI/SF) is derived from the full-length parental stress index measure (Loyd and Abidin, 1985) primarily as a screening instrument for parents who are experiencing stressors that are consistently related to (dysfunctional) parenting. It consists of 36 items to be rated on a five-point scale (1 – 5). The PSI/SF consists of three subscales of 12 items. The parental distress subscale assesses the amount of stress a parent is experiencing due to personal factors such as impaired sense of parenting competence, stresses associated with life role restrictions, conflict with the child’s other parent, and presence of depression (e.g. ‘I feel trapped by my responsibilities as a parent’). The parent – child dysfunctional interaction subscale focuses on the parent’s perception that the child does not meet the parent’s expectations. It also assesses the extent to which the child is seen to be a negative element in the parent’s life, and whether the parent perceives the interactions with their child to be reinforcing to him or her as a parent (e.g. ‘When I do things for my child, I get the feeling that my efforts are not appreciated very much’). The difficult child subscale

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assesses behavioural characteristics of children that make them either easy or difficult to manage, whether due to factors rooted in the temperament of the child or learned patterns of non-compliance and defiance (e.g. ‘My child reacts very strongly when something happens that my child doesn’t like’). The PSI has excellent validity for parenting stress in a range of chronic adversity contexts, including chronic health complaints (Abidin, 1995).

3. Results 3.1. Descriptive statistics 3.1.1. Adolescents Table 1 summarizes the descriptive statistics for the adolescent measures. It shows that adolescents reported high levels of pain. Mean average pain over the last week was 6.82 (SD 1.88, range 1 –10). There were high levels of disability (FDI, M ¼ 32:61; SD 9.74, range 1 –60). More than 85% of the adolescents score in the moderate to high range (FDI-score . 10; Kashikar-Zuck et al., 2001). Results indicated that adolescents are also emotionally distressed. The mean rating for depression (CDI-S) was 58.83 (SD 13.10): for 29.3% of the adolescents the CDI-S score was within the normal limits (T-score of 50 or less), 40% reported mildly elevated symptoms of depression (T-score between 51 and 65), 22.7% reported moderately elevated symptoms of depression (T-score between 66 and 79) and 8% reported severely elevated symptoms of depression (T-score of 80 or greater; Kashikar-Zuck et al., 2002). The mean score for anxiety (SCAS) was 31.71 (SD 15.51), which is significantly higher than the mean scores of two non-clinical groups (Spence, 1998: n ¼ 20; M ¼ 18:80; SD 9.72; Muris et al., 2002: n ¼ 521; M ¼ 16:9; SD 13.1), but not significantly different from the mean score of a clinical group of social phobics (n ¼ 20; M ¼ 32:20; SD 21.97). Table 1 also shows the total item scores for each of the eight pain coping scales. Each scale is a summary score with a 1 –5 range. The most endorsed coping subscale was seeking social support ðM ¼ 3:47Þ: The least endorsed coping subscale was externalizing ðM ¼ 2:37Þ: 3.1.2. Parents In Table 2 the descriptive statistics for the parent measures are shown. These summary statistics indicate that parents are also emotionally distressed. The mean rating for depressed mood (HAD) was 6.81 (SD 3.24, range 0– 21). The mean rating for anxiety (HAD) was 9.69 (SD 4.57, 0 –21). A cut-off score of 8 or more on either the anxiety or depression subscale (Barczak et al., 1988; Zigmond and Snaith, 1983) has been reported to be sufficiently sensitive and specific for case finding of patients with depressive disorders and with anxiety disorders. Forty percent of the parents scored above the cut-off for depressive disorders.

224

Table 1 Descriptive statistics and intercorrelations between adolescent variables N 1. 2.

6. 7. 8. 9. 10. 11. 12. 13. 14. 15.

a

SD

75 31.71 15.51 75 58.83 13.10 80 – 80 14.45 77 6.82

– 1.55 1.88

78 3.91 77 32.61

3.40 9.74

77 10.26

3.54

77 18.87 77 17.34

4.84 5.33

77 14.53

4.24

77

9.84

3.09

77 11.71

4.32

77 11.84 77 15.55

4.50 4.60

2

3

4

0.61*** 20.24* – 20.32**

*P , 0:05; **P , 0:01; ***P , 0:001: Denotes Pain Coping Questionnaire subscale.

–

5 0.13 20.02 0.14 0.13

6

7 0.16 0.11

20.01 20.01 20.11 – 20.12 0.27* – 20.07 –

8 0.21 0.20

20.10 0.23* 0.35** 0.00 –

9

10

11

12

13

0.07 0.02 0.02 20.06

20.10 20.18

20.03 20.07

20.09 20.32**

20.05 20.05

0.14 0.15 0.17

0.10 0.18 0.14

20.24* 0.07 20.02

20.25* 0.15 20.03

0.09 0.02 20.07

0.12 20.06 20.34**

20.04 20.18 0.10

20.24* 0.15 0.19

0.03 0.27*

0.03 0.20

20.02 0.26*

0.01 20.15

0.05 20.02

20.04 0.10

20.07 0.36***

0.75***

0.36***

0.35**

0.31**

0.15

–

0.49*** –

0.58*** 0.45***

0.36*** 0.23*

0.27* 0.05

–

0.24*

0.39***

–

0.23*

20.04 0.18 –

–

14 0.44*** 0.39***

0.24* 0.09 20.12

15 0.57*** 0.55***

0.30** 0.26* 0.20

0.07

0.11

20.03

20.08

0.09

20.13

–

0.48*** –

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3. 4. 5.

Anxiety (SCAS) Depression (CDI-S) Gender Age Pain intensity (VAS) Pain duration Functional disability (FDI) Information seekinga Problem solvinga Seeking social supporta Positive selfstatementsa Behavioural distractiona Cognitive distractiona Externalizinga Internalizing/ catastrophizinga

M

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225

Table 2 Descriptive statistics and intercorrelations between parent variables and adolescent variables Parent variables

N M (SD) Adolescent variables 1. Anxiety (SCAS) 2. Depression (CDI-S) 3. Gender 4. Age 5. Pain intensity (VAS) 6. Pain duration 7. Functional disability (FDI) 8. Information seekinga 9. Problem solvinga 10. Seeking social supporta 11. Positive self statementsa 12. Behavioural distractiona 13. Cognitive distractiona 14. Externalizinga 15. Internalizing/catastrophizinga a

Parent anxiety (HAD)

Parent depression (HAD)

Parental distress (PSI/SF)

Parent –child dysfunctional interaction (PSI/SF)

Difficult child (PSI/SF)

75 9.69 (4.57)

75 6.81 (3.24)

77 28.77 (7.64)

77 23.81 (7.99)

77 3.12 (9.09)

0.10 20.04 0.13 0.03 0.22 20.08 0.01 0.01 0.16 0.01 20.11 20.02 20.15 0.00 0.14

0.09 0.10 20.04 20.02 0.05 20.05 20.01 20.19 0.04 20.12 20.06 20.03 0.02 0.05 0.15

0.00 0.00 0.03 20.18 0.15 0.18 20.15 20.13 20.03 20.05 20.17 20.02 0.04 20.07 0.01

0.08 0.25* 20.02 20.15 0.05 0.22 20.05 20.13 20.20 20.17 20.27* 20.26* 0.03 0.04 0.07

0.23* 0.26* 0.06 20.19 0.04 0.22 20.15 0.03 20.14 20.24* 20.37*** 20.13 20.05 0.29* 0.05

*P , 0:05; **P , 0:01; ***P , 0:001: Denotes Pain Coping Questionnaire subscale.

Sixty-two percent scored above the cut-off for anxiety disorders. Overall, parental role stress was high. The total score on the PSI/SF was 83.66. According to Abidin (1995) parents who obtain a total score above 90 are experiencing clinically significant levels of stress: this was the case for 31% of our sample. For the three subscales the mean scores were 28.77 (70th percentile) for parental distress, 23.80 (75th percentile) for parent –child dysfunctional interaction and 31.11 (80th percentile). Subscale scores at or above the 85th percentile are considered high (Abidin, 1995). The percentage of parents who scored at or above this criterion for each subscale was as follows: parental distress, 39%; parent – child dysfunctional interaction, 36.4%; difficult child, 46.8%. 66.2% of the parents had at least one of the three subscale scores at or above the 85th percentile. An investigation of the mean scores of the PSI/SF revealed that the following items were the most endorsed: ‘I find myself giving up more of my life to meet my children’s need than I ever expected’ (M ¼ 3:75; SD 1.28); ‘My child is not able to do as much as I expected’ (M ¼ 3:08; SD 1.35); and ‘I often have the feeling that I cannot handle things very well’ (M ¼ 3:08; SD 1.22). The least endorsed items of the PSI/SF were: ‘I expected to have closer and warmer feelings for my child than I do and this bothers me’ (M ¼ 1:52; SD 0.87); ‘Most times I feel that my child does not like me and does not want to be close to me’ (M ¼ 1:6;

SD 1.00); and ‘My child rarely does things for me that make me feel good’ (M ¼ 1:71; SD 0.92). 3.2. Predictors of adolescent distress Table 1 summarizes the intercorrelations amongst the adolescent variables. Of particular interest to this study are the correlations with self-reported anxiety and depression in adolescents. Anxiety scores (SCAS) were negatively related to gender (r ¼ 20:24 : girls coded as 0, boys coded as 1), but positively to externalizing ðr ¼ 0:44Þ and internalizing/ catastrophizing ðr ¼ 0:57Þ: Depression (CDI-S) in adolescents was negatively related to gender ðr ¼ 20:32Þ and behavioral distraction ðr ¼ 20:32Þ; but positively to externalizing ðr ¼ 0:39Þ and internalizing/catastrophizing ðr ¼ 0:55Þ: Two separate multiple regressions were performed with anxiety and depression as dependent variables to investigate the unique contribution of adolescent variables on adolescent distress. In a first step, age, gender (girls 0; boys 1), pain duration and pain intensity were entered to control for demographic variables and pain severity. In a subsequent step, all eight coping scales were entered using a stepwise inclusion method. The results of these multiple regressions are displayed in Table 3. Variance inflation factors in both regression analyses were small, indicating that there was no problem of colinearity. The analysis with anxiety as

226

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Table 3 Results of the hierarchical regression analyses for adolescent anxiety and depression Criterion variable

Step

Predictor

b

R2change

R2

Adj R2

Anxiety (SCAS)

1

Gender Age Pain intensity Pain duration Internalizing/catastrophizing Seeking social support

20.13 20.03 20.13 0.20* 0.63*** 20.27**

0.09

0.09

0.04

0.29*** 0.07**

0.38 0.45

0.34 0.40

Gender Age Pain intensity Pain duration Internalizing/catastrophizing Seeking social support Behavioural distraction

20.20* 0.14 0.06 0.14 0.59*** 20.38*** 20.28***

0.15*

0.15

0.10

0.22*** 0.16*** 0.08**

0.37 0.53 0.61

0.32 0.49 0.565

2 3 Depression (CDI)

1

2 3 4

*P , 0:05; **P , 0:01; ***P , 0:001: The reported standardized bs are those from the final step in the regression analysis.

dependent variable showed that internalizing/catastrophizing [b ¼ 0:63; R2change ¼ 0:29; Fchange ð1; 67Þ ¼ 31:36; P , 0:0001] and seeking social support [b ¼ 20:27; R2change ¼ 0:07; Fchange ð1; 66Þ ¼ 8:17; P , 0:01] were both independent and unique predictors of anxiety in adolescents. The second regression analysis revealed that internalizing/catastrophizing [ b ¼ 0:59; R2change ¼ 0:22; Fchange ð1; 67Þ ¼ 23:01; P , 0:0001], seeking social support [ b ¼ 20:38; R2change ¼ 0:16; Fchange ð1; 66Þ ¼ 22:79; P , 0:001] and behavioral distraction [ b ¼ 20:28; R2change ¼ 0:08; Fchange ð1; 65Þ ¼ 12:68; P , 0:01] were independent and unique predictors of depression in adolescents. 3.3. Predictors of parental stress Table 2 also summarizes the correlations between the parental stress measures and the adolescents’ variables. There are few significant correlations between the parental stress measures and the adolescent measures. None of the adolescent variables was significantly related to parental anxiety (HAD) and depression (HAD). There was also no adolescent variable that was significantly related to the parental distress subscale of the PSI/SF. The parent – child dysfunctional interaction subscale (PSI/SF) was correlated negatively with positive self-statements ðr ¼ 20:27Þ and behavioral distraction ðr ¼ 20:26Þ; and positively with adolescent depression ðr ¼ 0:26Þ: The difficult child subscale (PSI/SF) was correlated negatively with positive selfstatements ðr ¼ 20:37Þ; seeking social support ðr ¼ 20:24Þ and positively with adolescent depression ðr ¼ 0:26Þ; adolescent anxiety ðr ¼ 0:24Þ and externalizing coping ðr ¼ 0:29Þ: A series of multiple regressions was performed with each of the five parental distress measures as dependent variables. The purpose of these analyses was to investigate

the unique contribution of adolescent variables on parental stress. A standard procedure was adopted for all analyses. In the first step, gender, age, pain duration and pain intensity were entered. In the next step, the adolescent distress and coping variables were entered stepwise. The results of these multiple regressions are displayed in Table 4. In line with the correlational analyses, there were no significant predictors of scores on parental anxiety (HAD) and parental depression (HAD). The regression analysis with parental distress (PSI/SF) as dependent variable showed that this variable was predicted by adolescent age [b ¼ 20:27; tð66Þ ¼ 22:27; P , 0:05], and pain duration [b ¼ 0:27; tð66Þ ¼ 22:22; P , 0:05]. The regression analysis with parent – child dysfunctional interaction (PSI/SF) as dependent variable revealed that this subscale was uniquely predicted by age [b ¼ 20:33; tð66Þ ¼ 22:81; P , 0:01], pain duration [b ¼ 0:27; tð66Þ ¼ 2:36; P , 0:05] and by adolescent depression [ b ¼ 0:33; R2change ¼ 0:095; Fchange ð1; 65Þ ¼ 7:84; P , 0:01]. The regression analysis with the difficult child (PSI/SF) as dependent variable extended the latter finding. This subscale was uniquely predicted by age [b ¼ 20:36; tð66Þ ¼ 23:16; P , 0:005], pain duration [b ¼ 0:28; tð66Þ ¼ 2:52; P , 0:05] and by adolescent depression [ b ¼ 0:37; R2change ¼ 0:12; Fchange ð1; 65Þ ¼ 23:01; P , 0:005].

4. Discussion A clinical sample of 80 adolescents with severe chronic pain reported high levels of emotional distress. General anxiety scores were twice as large as a non-clinical population and 70% of the sample reported depression at levels above the normal range. For the accompanying parent, high levels of depressive symptoms were seen in 40% of the sample, and 60% of the parents had a high level

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Table 4 Results of the hierarchical regression analyses for parental stress Criterion variable

Step

Predictor

b

R2change

R2

Adj R2

Anxiety (HAD)

1

Gender Age Pain intensity Pain duration

0.17 0.02 0.24 20.05

0.09

0.09

0.03

Depression (HAD)

1

Gender Age Pain intensity Pain duration

20.01 0.00 0.05 20.06

0.01

0.01

0.00

Parental distress (PSI/SF)

1

Gender Age Pain intensity Pain duration

0.08 20.27* 0.12 0.27*

0.13

0.13

0.08

Parent–child dysfunctional interaction (PSI/SF)

1

Gender Age Pain intensity Pain duration Depression (CDI)

0.13 20.33** 20.02 0.27* 0.33**

0.11

0.11

0.06

0.095

0.21

0.15

Gender Age Pain intensity Pain duration Depression (CDI)

0.21 20.36** 20.05 0.28* 0.37**

0.13

0.13

0.08

0.12

0.25

0.19

2 Difficult child (PSI/SF)

1

2

*P , 0:05; **P , 0:01; ***P , 0:001: The reported standardized bs are those from the final step in the regression analysis.

of general anxiety. Furthermore 66% of the parents showed at least one of the three subscale scores of the parenting stress index as clinically high. In particular, 45% of parents reported high stress associated with parenting a ‘difficult child’. On further analyses, the best predictors of adolescent emotional distress were the extent to which the adolescents catastrophize and seek social support to cope with the pain. There were no clear predictors of general parental emotional distress, but the specific pattern of stress of parenting were best predicted by the younger age of the adolescent, the greater the chronicity of the problem, and the greater the extent of adolescent depression. These results replicate and extend the finding that maladaptive coping strategies are associated with anxiety and depression (Harding Thomsen et al., 2002; Kashikar-Zuck et al., 2001, 2002). Examining more closely the item content of the coping subscales predictive of anxiety (internalizing/catastrophizing and seeking social support) both contain items concerned with either the private experience of emotion or the expression of emotion (e.g. ‘let my feelings out to a friend’). The role of emotional expression has been extensively researched with adults with chronic pain largely by a focus on catastrophic internalizing thinking (Sullivan et al., 2001). For adolescents it may be more important to understand catastrophic thinking about pain within a context of seeking or demanding help for unmanageable aversive emotion (Crombez and Eccleston,

2002; Crombez et al., 2003). Often the primary person help is sought from is a parent. Adolescent coping strategies were not helpful in explaining anxiety and depression reported by parents. However, parenting stress was predicted by adolescent depression, young age of the child and the long duration of pain. For parents, these characteristics seem to be a major challenge to normal parent – child relationships. Parents of adolescents with chronic pain are inclined to view their child as difficult and their relationship with them as dysfunctional. This finding deserves further exploration. Looking at the overall endorsement of the items of the parenting stress index there is a general endorsement of items that reflect a loss of ‘normal’ parenting experience and an anxiety at being unable to help, but also an endorsement of items that report the parent – adolescent relationship as ‘close’. At first this juxtaposition of items may be confusing. Parents report being close with their children but find the relationship dysfunctional and the child difficult. In a recent study of parents of children with chronic illness, Barlow et al. (1998) reported that parents find the witnessing of their children’s frustrated attempts to live normally despite illness, the most stressful aspect of parenting a child with chronic illness. The distress of parenting an adolescent with chronic pain can perhaps best be understood within a context of frustrated parental attempts to provide effective care. It remains to be investigated whether depressed

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adolescents are less responsive to the parental attempts at coping, or whether parents mistakenly persevere with ineffective strategies of coping with adolescent pain and emotion, thereby fuelling distress. This study has two main clinical implications. First, recent developments in cognitive behavioural therapy for chronic pain in children have stressed the potentially important role of parents in treatment (Eccleston et al., 2002, 2003; Sanders et al., 1994). To date the most effective methods of including parents within treatment are not known. However, a primary candidate for further research may be emotional coping (Kazdin and Weisz, 1998; Kibby et al., 1998). Second, if parents are to be therapeutic agents, their untreated depression may be both a clinical problem in and of itself, and a barrier to the effective delivery of treatment to the adolescent. This study has a number of limitations. First, the participants were recruited from a tertiary-care national referral centre and hence may not be representative of all adolescent chronic pain patients. Second, these results are based on cross-sectional data from related samples. It is not possible to determine the direction of the relationship between variables. Longitudinal research will help identify the causal relationship between variables. In particular, we are not able to definitively predict the direction of association between parental distress and adolescent depression (e.g. Williamson et al., 2002). Third, a number of the measures used were developed with non-pain populations and/or with younger children. Although they were the best available instruments, their use may have introduced levels of measurement error that inflate the possibility of type II error. An important future development will be the creation of multidimensional instruments to measure the impact of pain on adolescents and their parents (Jordan et al., 2003). Finally, although these results highlight as important the interpersonal (relational) context of coping with adolescent chronic pain, they are based on self-report data. The challenge for future studies will be to examine the relationship between self-reported emotional coping and direct observation of adolescent and parent coping behaviour and parent –child coping interactions. A number of further questions remain to be answered in future studies. First, the size of the sample does not allow for potentially interesting subgroup analyses. It remains to be seen if different patterns of distress can be defined by different pain symptoms, and/or coping profiles. Second, it is not clear from this study if these findings are specific for adolescents and parents struggling with chronic pain, or if they extend to other chronic illness situations, or extend to other non-illness-related chronic adversity situations. Comparison studies with different populations will allow us to determine the specificity of these effects. Finally, in this study the focus of investigation was upon emotional distress and emotional coping. An important area of future study will be on the related question of the prediction of pain-related

disability, including non-self-report measures of observed functional impairment and school absence.

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