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OCCUPATIONAL THERAPY INTERNATIONAL

Occup. Ther. Int. 13(4): 224–233 (2006)


Published online 9 October 2006 in Wiley InterScience
(www.interscience.wiley.com) DOI: 10.1002/oti.219

Coping with chronic pain


associated with cerebral palsy

JOYCE M. ENGEL, Department of Rehabilitation Medicine, School of Medi-


cine, University of Washington, USA
MARK P. JENSEN, Department of Rehabilitation Medicine, School of Medi-
cine, University of Washington and Multidisciplinary Pain Center, Univer-
sity of Washington Medical Center, Washington, USA
LAUREN SCHWARTZ, Department of Rehabilitation Medicine, School of
Medicine, University of Washington, USA

ABSTRACT: Fifty-nine adults with cerebral palsy (CP) were administered, via in-
person interviews, measures of pain intensity, pain-related disability, and psychologi-
cal functioning, in addition to a measure of pain coping (Waldron/Varni Pediatric
Pain Coping Inventory; PPCI). Regression analyses indicated that the PPCI scales
made a nonsignificant contribution to the prediction of pain intensity, but did make
a significant contribution to the prediction of psychological functioning when control-
ling for pain intensity. Only the PPCI Catastrophizing subscale made a significant
independent contribution to the prediction of psychological functioning, and only the
PPCI Seek Social Support subscale made a significant independent contribution to
the prediction of pain-related disability. These findings support a link between coping
and functioning among adults with CP, and suggest that catastrophizing responses
and some aspects of support seeking may be maladaptive for coping with CP-related
pain. Limitations of the study include a correlational design, a reliance on self-report
data, and a small subject population. Experimental research is needed to determine
if changes in coping lead to changes in psychological and physical functioning. Copy-
right © 2006 John Wiley & Sons, Ltd.

Key words: pain-related disability, cerebral palsy, therapeutics, occupational


therapy

Introduction

Cerebral palsy (CP) affects approximately 500,000 youths and adults in the
United States (March of Dimes, 2006). There is emerging evidence that chronic
pain is a common and serious secondary problem for many adults with CP. For
Occup. Ther. Int. 13(4): 224–233 (2006)
Copyright © 2006 John Wiley & Sons, Ltd DOI: 10.1002/oti
Chronic pain and cerebral palsy 225

example, Turk and colleagues (1997) surveyed 63 women with CP and found
that 84% reported experiencing chronic pain in at least one body location.
For 56% of the sample, pain was reported to limit activity. Similarly, Schwartz
et al. (1999) interviewed 93 adults with CP, and 67% of the study sample
reported one or more areas of chronic pain. Moreover, about half of the sample
with pain reported that their pain occurred daily and was of moderate-to-severe
intensity. However, only minor interference from pain with routine daily activi-
ties and participation was reported on average. Participants identified a number
of factors that exacerbate (e.g. stress, fatigue) and relieve (e.g. exercise) pain.
This study was replicated with a new sample of 100 adults with CP. As earlier,
67% reported recurrent, bothersome pain in at least one location and with
minor pain interference with routine daily activities and participation. Twenty-
four percent reported constant pain (Engel et al., 2003). In addition, an exami-
nation of the pain treatments received by these individuals indicated that
their pain problems were often overlooked and under-treated (Engel et al., 2002,
2003).
That participants in Schwartz et al.’s (1999) study recognize that both psy-
chological and physical factors can change their pain experience is consistent
with cognitive-behavioural theories and contemporary biopsychosocial theories
of pain (Novy et al., 1995). These theories hypothesize that how individuals
respond to and cope with pain affects their adaptation (adjustment) to chronic
pain. The term ‘coping’ refers to the efforts made by individuals to manage the
demands placed on them (Lazarus and Folkman, 1984). Coping strategies are
adaptive when they strengthen the individual’s ability to meet challenging situ-
ations. In contrast, maladaptive coping strategies result when the demand is
unresolved or intensifies (Townsend, 2000). Research indicates there is a sig-
nificant association between cognitions and coping strategies, and adaptation
among persons with chronic pain. Adaptive coping strategies are those that
have been shown to be associated with improvement in functioning. They
include such strategies as maintaining an active lifestyle despite pain, partici-
pation in a regular exercise programme, and the use of reassuring coping self-
statements when in pain (‘I know I can handle this’), and ignoring pain. In
contrast, maladaptive pain coping strategies are those that are believed to lead
to long-term deceases in functioning, even if they provide temporary pain relief.
Postural guarding, resting, asking for assistance, and catastrophizing (excessive
negative thoughts about pain) are all thought to be maladaptive pain coping
strategies in persons with chronic pain (Jensen et al., 1995; Rosenstiel and Keefe,
1983).
Knowledge of an individual’s coping responses has direct clinical relevance.
Occupational therapists adhering to the coping model collaborate with the
client in assessing his or her problem solving skills, self-talk in varied contexts,
and self-identification of possible problems and coping responses (Bruce and
Borg, 2002). Based on this assessment, therapists can encourage clients to con-

Occup. Ther. Int. 13(4): 224–233 (2006)


Copyright © 2006 John Wiley & Sons, Ltd DOI: 10.1002/oti
226 Engel, Jensen and Schwartz

tinue to use coping responses that have been found to be adaptive, and discour-
age the use of coping responses that have been shown to be maladaptive. In
order to do this effectively, however, there is a need for research that identifies
the association between specific coping responses and adjustment to chronic
pain.
Unfortunately, little research has examined the coping strategies associated
with adaptation to CP-related pain. Our initial research has indicated that pain-
contingent rest (resting when experiencing pain) and catastrophizing were both
significantly associated with pain interference and depressive symptoms (Engel
et al., 2000). The purpose of this study was to examine further the associations
between adaptation and coping with chronic pain in a sample of adults with
CP using a different measure of pain coping, specifically the Waldron/Varni
Pediatric Pain Coping Inventory (PPCI; Varni et al., 1996).

Method

Participants
The study participants were 59 adults with CP attending medical and rehabilita-
tion clinics at the University of Washington and from local residential and
community-based treatment facilities for persons with developmental disabili-
ties. Participants were recruited from a previous study by the authors on the
nature and scope of pain in adults with CP (Schwartz et al., 1999). Inclusion
criteria were: (1) primary diagnosis of CP, (2) documented IQ of at least 70 or
clinical judgement of health care provider of no more than mild cognitive
impairment, (3) chronological age of 18 years or older, and (4) reported pain
problem of at least three months duration.

Measures
Demographics
Participants were asked to report their age, sex, ethnicity, employment status,
and marital status. The average age of the study participants was 37.03 years
(range = 19–71 years, SD = 11.34 years). The majority of participants were male
(54.2%). Most participants described themselves as Caucasian (91.5%), but there
was Native American (3.4%) and African American (3.4%) representation.
Many participants (52.5%) were gainfully employed or in school part or full-
time. Twenty percent were married or living with a significant other. The
majority of the participants had quadriplegic type CP (71.2%); and 67.8% had
spastic, whereas 25.4% had mixed, 5.1% athetoid, and 1.7% hypotonic type CP.
Most of the participants were non-ambulatory (85.7%). Eleven participants
(18.6%) used augmentative communication devices.

Occup. Ther. Int. 13(4): 224–233 (2006)


Copyright © 2006 John Wiley & Sons, Ltd DOI: 10.1002/oti
Chronic pain and cerebral palsy 227

Pain intensity
Pain intensity was assessed by asking participants for verbal self-reports on 11-
point numerical rating scales, with 0 = ‘no pain’ and 10 = ‘pain as bad as could
be’. Specific questions and end points for ‘current, worst, and average pain’ were
adapted from the items used to grade chronic pain status (Von Korff et al.,
1992).

Pain coping
The 41-item Waldron/Varni Pediatric Pain Coping Inventory (PPCI; Varni
et al., 1996) was used to assess the self-reported frequency with which par-
ticipants use five coping strategies to cope with chronic pain: cognitive self-
instruction (internal self-statements that deal with an individual’s pain at a
cognitive level), problem-solving (overt acts that are intended to manage pain),
distraction (shifting attention to things other than the pain), seeking social
support (seeking aid, comfort, or understanding from significant others), and
catastrophizing/helplessness (feelings of victimization and powerlessness over
the pain). Although the PPCI was originally developed for the pediatric popula-
tion, there were several reasons for its use with the study sample. First, the
coping strategies assessed by the PPCI have been hypothesized, and strongly
shown, to be associated with adjustment to chronic pain in samples of adults
who present with pain as a primary problem (Boothby et al., 1999). Second,
the inventory is brief, and the items are easy to administer. For example,
responses to the items are given using a three-point Likert-type scale. These
questionnaire characteristics are important as approximately 65% of persons
with CP have cognitive impairment and frequent language difficulties (Miller
and Clark, 1998).

Psychological functioning
Participants completed the five-item version of the Mental Health Inventory
(MHI-5; Berwick et al., 1991). This inventory assesses anxiety, general positive
affect, depression, and behavioural/emotional control. The MHI-5 was later
incorporated into the SF-36 Mental Health Scale (Ware et al., 2000) to assess
psychological functioning. Higher scores on the MHI-5 indicate more positive
levels of psychological functioning.

Pain-related disability
Pain-related disability was assessed using the pain interference scale from the
Chronic Pain Grade Scale (Von Korff et al., 1992). This scale averages partici-
pants’ responses to three 0–10 scales of pain interference with daily activities
and participation. The higher the score, the greater the interference present.
Occup. Ther. Int. 13(4): 224–233 (2006)
Copyright © 2006 John Wiley & Sons, Ltd DOI: 10.1002/oti
228 Engel, Jensen and Schwartz

Procedure
The study protocol was reviewed and approved by the appropriate institutional
review boards. After informed consent was obtained, data were collected in
face-to-face interviews incorporating the above-described standardized ques-
tionnaires. The interviews were conducted at the University of Washington
Medical Center or the participant’s home, whichever was most convenient for
the participant. The primary interviewer who collected most of the data was
an occupational therapist (JME). Data were also collected by two psychologists
(MPJ, LS), who had extensive experience in chronic pain management and
rehabilitation, a research coordinator, and a research assistant who had in-depth
training in interview skills with the CP population. Augmentative communica-
tion devices and cue cards were used to facilitate data collection.

Results

Three multiple regression analyses were performed to determine the ability of


the PPCI scales to predict average pain intensity, psychological functioning
(MHI-5) and pain-related disability (Chronic Pain Grading System Disability
Scale; von Korff et al., 1992). In the analyses predicting the latter two criterion
measures, average pain intensity was controlled by entering the 0–10 measure
of average pain in step one. The results of these analyses are presented in Table
1, and show that, although most of the PPCI scales were not significantly associ-
ated with the criterion measures, PPCI Catastrophizing/Helplessness did show
an expected negative association with psychological functioning, and PPCI
Seeks Social Support was significantly and positively associated with pain-
related disability.

Discussion

The results of the study support and extend previous research regarding the
association between coping and adaptation to chronic pain in adults with CP.
As predicted, pain coping strategies were significantly associated with measures
of psychological functioning and pain-related disability. Not all coping strate-
gies, however, appeared equally important. Specifically, in the current sample,
catastrophizing was significantly negatively associated with a measure of psy-
chological functioning, and seeking social support was associated positively with
pain-related disability.
The significant negative association between catastrophizing and adaptive
psychological functioning is consistent with our previous findings of significant
and strong positive associations between catastrophizing and both depressive
symptoms and pain interference in a similar sample of adults with CP-related
Occup. Ther. Int. 13(4): 224–233 (2006)
Copyright © 2006 John Wiley & Sons, Ltd DOI: 10.1002/oti
Chronic pain and cerebral palsy 229

TABLE 1: Multiple regression analysis predicting average pain intensity

Step and variable Total Change

R2 R2 F Beta
Criterion: Pain intensity
PPCI scale scores 0.16 0.16 2.00
Catastrophizing −0.23
Distraction 0.22
Cognitive Self-Instruction 0.00
Seeks Social Support 0.17
Problem-Solving −0.24
Criterion: MHI-5
Average pain intensity 0.04 0.04 2.34 −0.20
PPCI scale scores 0.32 0.28 4.20*
Catastrophizing −0.49*
Distraction 0.04
Cognitive Self-Instruction −0.11
Seeks Social Support −0.22
Problem-Solving −0.06
Criterion: Chronic pain grade
Average pain intensity 0.23 0.23 15.63** 0.48
PPCI scale scores 0.39 0.15 2.25
Catastrophizing 0.15
Distraction −0.05
Cognitive Self-Instruction 0.01
Seeks Social Support 0.41*
Problem-Solving 0.21

*p < 0.01, **p < 0.001


PPCI = Waldron/Varni Pediatric Pain Coping Inventory; MHI-5 = Mental Health
Inventory–5

pain (Engel et al., 2000; Jensen et al., 2006). These findings are also consistent
with the large body of research that finds significant associations between mea-
sures of catastrophizing cognitions and measures of adjustment in people with
CP who present with pain as a primary problem (Boothby et al., 1999). That
this association was replicated in the current study, in a new sample of adults
with CP-related pain and using a new measure of catastrophizing, argues for the
reliability and generalizability of the finding.
To the extent that catastrophizing cognitions contribute to depressive symp-
toms specifically, and lower quality of life in general (and current biopsychoso-
cial models of chronic pain hypothesize such a causal association (Novy et al.,
1995), then the current findings suggest that one of the most effective strategies
for improving quality of life in adults with CP-related pain would be to help
Occup. Ther. Int. 13(4): 224–233 (2006)
Copyright © 2006 John Wiley & Sons, Ltd DOI: 10.1002/oti
230 Engel, Jensen and Schwartz

these individuals identify, and then eliminate, catastrophizing cognitions. The


most common treatment for decreasing catastrophizing cognitions is cognitive
restructuring, a specific component of cognitive-behaviour therapy (e.g. Turk,
2002), which teaches people to identify catastrophizing cognitions and replace
them with more realistic and reassuring thoughts. There is a great deal of
empirical support for the efficacy of such treatments for reducing disability and
depression among persons who present with pain as a primary complaint (Morley
et al., 1999), although the efficacy of such treatments for persons with CP-related
pain or cognitive impairment have yet to be tested.
Although cognitive restructuring is one method for decreasing catastroph-
izing cognitions in adults with CP-related pain, people with CP also learn about
pain and appropriate responses to pain from a variety of health care providers,
including occupational therapists and physical therapists. In fact, patients with
CP are probably more likely to receive treatment from, and interact with, occu-
pational therapists and physical therapists than with psychologists or other
providers specifically trained in cognitive restructuring. Therapists who not only
provide self-care, appropriate exercise and stretching supervision, but who, in
the process of providing occupational and physical therapy, could help people
with CP learn that increased pain (which can occur during therapy) does not
necessarily lead to increased dysfunction, and who could reassure them that
they can cope with pain and improve their functioning and quality of life
despite pain, can potentially have an important impact on people with CP’s
quality of life. Thus, the present findings have direct implications for how
therapists provide care, and argue for the importance of helping people with
CP stretch and strengthen the ‘muscle between the ears’ as well as the muscles
and tendons in the rest of the body.
The significant positive association found between seeking social support
and pain-related disability in the current study was unexpected. This finding
could potentially be explained by the possibility that participants with greater
pain-related disability might seek more support. It is also possible that certain
types of support seeking (specifically, seeking solicitous responses to pain behav-
iours; Fordyce, 1976) may be maladaptive. An examination of the specific items
on the PPCI Seeks Social Support Scale suggest that these may reflect support
seeking that could potentially both lead to the provision of positive support (e.g.
‘Ask for a hug or kiss’), and also lead to a decrease in interaction and function-
ing (e.g. ‘Ask to stay by myself’). In addition, to the extent that social support
responses are provided on a pain-specific basis (rather than on an ongoing basis
that are not dependent on pain behaviours), the operant model of chronic pain
argues that such support leads to decreases, rather than increases, in physical
functioning (cf. Romano et al., 1992; 2000). At least one of the items on the
PPCI Seeks Social Support Scale appears to reflect a desire and request for
pain-contingent responses (‘Ask for someone to understand how I hurt’). Thus,
it is possible that the PPCI Seeks Social Support Scale may reflect maladaptive,
rather than adaptive, social support seeking. More research is needed to deter-
Occup. Ther. Int. 13(4): 224–233 (2006)
Copyright © 2006 John Wiley & Sons, Ltd DOI: 10.1002/oti
Chronic pain and cerebral palsy 231

mine whether the operant model of chronic pain, which has obtained a great
deal of support in the general chronic pain literature, generalizes to persons
with CP-related pain, and the extent to which different measures of support,
including the PPCI Seeks Social Support Scale, reflect helpful versus less helpful
support-seeking behaviour.
There are several limitations of the current study that should be noted.
Primary among them is that the study is correlational. Therefore, the findings
do not allow for casual conclusions concerning the potential impact of coping
on functioning or vice versa. Experimental research is needed to determine if
changes in coping (specifically, catastrophizing and support seeking) lead to
changes in psychological and physical functioning. In addition, all of the vari-
ables were obtained via self-report. Thus, it is possible that some of the associa-
tions found could be attributed to shared method variance, rather than any true
association between the domains of coping and functioning. Since statistically
significant associations were found for some pairs of variables and not others
argues against shared method variance as a primary explanation for the signifi-
cant associations found. Finally, the sample size in this study is relatively small,
which puts a limit on the power for detecting significant associations. Thus, it
is possible that some coping responses may be adaptive for some people with
CP (e.g. problem solving for pain intensity), but that these relationships were
not identified because of low power. Although collecting data from persons with
CP who also have communication challenges is time-consuming, making it
difficult to obtain data such as that collected in the present study in large
numbers of participants, future researchers should seek to maximize the sample
sizes of similar studies whenever possible to ensure that important associations
are identified.
Despite the limitations of the current study, the findings provide additional
support for the utility of a cognitive-behavioural model of CP-related chronic
pain. Moreover, the findings point to two specific coping strategies, in particular,
as potentially important to target in CP-pain treatment programmes: decreasing
catastrophizing cognitions and maladaptive (pain-contingent) support seeking.
Future research is needed to validate the results, and to determine the causal
impact of changes in coping in persons with CP-related pain.

Acknowledgements

The authors gratefully acknowledge the assistance of Amy J. Hoffman, Bridget


Bjork, Catherine McClellan, Erica Tyler, Helen Marshall, and Cindy Davis, for
their invaluable assistance in data collection and database management. This
work was supported by grant PO1 ND/NS 33988, ‘Management of Chronic Pain
in Rehabilitation’, from the National Institute of Child Health and Human
Development and the National Institute of Neurological Disorders and Stroke,
National Institutes of Health.
Occup. Ther. Int. 13(4): 224–233 (2006)
Copyright © 2006 John Wiley & Sons, Ltd DOI: 10.1002/oti
232 Engel, Jensen and Schwartz

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Address correspondence to Joyce M. Engel, PhD, OTR/L, FAOTA, Department of Rehabilita-


tion Medicine, University of Washington Medical School, 1959 NE Pacific Street, Box 356490,
Seattle, WA 98195-6490, USA. Tel: +1 206 598-0005. E-mail: knowles@u.washington.edu

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