The present study successfully created instruments for clinical use to measure pain-coping with an abbreviated scale for children and a novel scale for parents.
The study demonstrated adequate internal consistency measured by an alpha coefficient and reliability for PCSped and PCSpar. Four subscales were detected in PCSped (CATped, SSSped, BDped, PCDped) and PCSpar (CATpar, SSSpar, PSSpar, and DISpar). This study also demonstrated that the questionnaires have good psychometric properties (e.g., reliability). The criterion validity was acceptable as the demographic, disease related, and the comparison questionnaires correlated with PCSpar and PCSped subscales.
In agreement with earlier studies[21, 26], CATped and CATpar were strongly associated with elevated levels of depressive symptoms (measured by CDI and BDI) and with the level of stress. The content of the catastrophising factor included items reflecting aspects such as rumination, helplessness, and heightened threat. In our study, CATpar was associated with depressive symptoms in children and parents. Similarly, Caes et al. found that parents with catastrophising thinking prioritise pain control over active engagement. In acute pain situations, parental catastrophising might be functional and foster pain relief; however, in the long run, perseverance in pain control may become dysfunctional[27]. It was recently found that parental catastrophising has a substantial impact on the functional disability of the child and that parental protective behaviour independently slows child´s functional improvement[28].
In the current study of the parental factors, catastrophising was a robust factor. Other parental subfactors correlated with other aspects of coping and were thus vaguer. The entire picture of parental coping is likely to be complicated. A child´s pain may provoke a parental need to help the child. Thus, coping can be seen as a dyadic process in which several reciprocal aspects interact regarding a child in pain. Our sample's median duration of pain was one year, which most likely affected the whole family. However, the parents and the patients were not severely depressed. This phenomenon may have limited the use of depressive symptoms as a measure of criterion validity because the variability of the scale was low.
Parents require different aspects of coping to support a child[7–10]. On the other hand, children tend to have fears, catastrophising thoughts, magnification of possible awful consequences of pain, and less experience of coping attempts[29]. It follows that the content of child´s and adolescent´s coping styles with pain differs from that of adults. This was also a finding of the current study, as the item content of the subfactors in the parental and child scales differed slightly.
There was a correlation between CATped and CATpar and SSSped and SSSpar. Parents who are the most important adults in the life of a developing child, might shape their child’s functioning with pain in several ways. Parental coping (e.g., optimal psychological flexibility or parental distress) may serve as a resilience or risk mechanism for a child[30]. Recently, Stone and Wilson[31] introduced a model for transmitting chronic pain from parents to offspring. One aspect of the model is pain-specific social learning, through which children may learn pain-coping by modelling their parents. In the current cross-sectional study, parental pain symptoms were not studied, such that evaluation of the transmission model was not possible. However, pain catastrophising, a non-adaptive coping style, may be socially passed for the child e.g., by restricting potentially painful activities of the child or by communicating high threat information about pain in the family[31]. Some support has been found for the social learning perspective in families with pain symptoms[32]. In turn, the daily fluctuation of parenting stress appears to influence their pain-coping[7].
In JIA, disease activity is measured by Juvenile Arthritis Disease Activity Score (JADAS) [33]. The child's overall well-being assessed by the parent/patient (PaGA) is one of four parameters in JADAS. PaGA has been shown to correlate strongly with a parent’s assessment of their child’s pain[34]. Because in this study, the parents´ assessments of their child’s pain correlated with the CATpar, we believe that the catastrophising of the patient and parent should be considered when evaluating the overall situation at rheumatologic visits. Because CATped and CATpar subscales showed a significant correlation with the two-item catastrophising scale in children, the shorter two-item catastrophising scale could be used to evaluate the catastrophising situation in both patients and parents swiftly. However, we believe that using the PCS might be beneficial as it provides information on coping strategies other than catastrophising.
There are some limitations to our study. The study was cross-sectional, and this structure does not enable conclusions to be drawn about the direction or causality of the relationships between pain-coping and clinical data. In data collection, coping-related factors such as optimism and psychological flexibility would have strengthened the current results because some subfactors of the scales reflected the aspect of active coping. Adding a generic quality-of-life coping-related questionnaire would have clarified the meaning of pain-coping in children’s and adolescents’ lives. The study would have benefitted from a larger, international sample size. There were only ten answers in Swedish, a minority language in Finland, and conclusions are difficult to draw about this patient group.
The strength of our study was that pain-coping was investigated in children and parents, and thus we found that the coping strategies differed somewhat in parents and children. Moreover, children and adolescents with musculoskeletal pain were systematically recruited from secondary and tertiary centres throughout Finland and sample-size was adequate based on current recommendations [35].
In the future, it would be helpful to validate the questionnaires in an international population to determine whether cultural differences would impact the results. Further validation of the questionnaire in a prospective setting would help to explain the causal relationship or its direction between pain-coping and clinical data. Shortly, the association of subfactors reflecting active engagement (e.g., positive cognitive distraction and seeking social support) could be tested with optimistic processes or psychological flexibility.