A diagnosis of chronic pain is not a milestone that parents and young people plan for. Similarly, knowing how to effectively respond to and care for a child who is experiencing pain that sticks around for longer than anticipated is not part of most parents’ parenting toolkit. Thus, parenting a child with chronic is pain is uniquely difficult- not only because it is uncomfortable to see your child experience persistent pain, suffering, and disruptions in daily living, but also because it’s often unclear how to help your child, especially when responses that typically bring comfort to a child in acute pain (cuddles, ice packs, or a day off from school) may not be as helpful for chronic pain . In fact, parent responses that appear to be most helpful in the context of chronic pain, such as maintaining a neutral response to child expressions of pain, or not asking about pain  can be quite unintuitive.
In research and clinical settings, parent responses to their child’s pain can be characterized into four domains . These include protective (such as limiting the child’s activities), monitoring (checking on pain symptoms), minimizing (criticizing symptoms), and distracting responses (trying to engage them in an activity). In particular, research shows that parental protective responses can be linked to worse child outcomes, such as decreases in school functioning and higher levels of pain-related disability . However, more of any of these responses can be associated with greater disability, likely because each of these kinds of responses reflects chronic pain affecting more activities, relationships, and in general affecting more of life.
When pain affects many areas of life, youth may participate in intensive interdisciplinary pain treatment (IIPT). This approach utilizes the expertise of a team of providers, such as medical and mental health providers, physical and occupational therapists, art and music therapists, and nurses. Recognizing that parents play a huge role in a child’s life and their experiences with pain, IIPT for children and adolescents includes parents in treatment. Key aspects of treatment for parents of youth with chronic pain include considering the impact of their responses to their child’s pain, fostering independence in their child, supporting parents in working with their own distress, as well as increasing awareness of how emotions impact decision making, particularly related to parenting .
In our recent article in The Journal of Pain , we examined changes in 114 parents’ responses to their child’s pain during IIPT and through a one year follow up period. These parents participated in twice weekly parent-only groups, which provided education about parent responses to child symptoms and sought to facilitate parents’ coping with their own distress using an acceptance-based approach. Their children (aged 10-19) completed IIPT, which included physical and occupational therapy, creative arts (art and music therapy), relaxation (yoga, guided imagery), psychological intervention (individual and group-based), and medical oversight.
For this study, we specifically evaluated measures of child pain, child disability, and parent responses to child pain. The measure of parent responses included subscales for protective, monitoring, minimizing, and distracting responses. We included data from before youth started the IIPT program, weekly during the program, and in follow-up at one month, six months, and twelve months. Because of this intense, longitudinal data collection we were able to use multilevel modeling to examine changes in parent responses, and compare how these changes in parent responses related to changes in child pain and child functioning.
Results showed significant decreases in all categories of parent responses, meaning that parents were engaging in fewer of all these types of responses to their child’s pain less over time. The largest changes were for protective responses, which decreased to approximately one half of baseline values by program end, and to less than one third of their baseline values by the 6-month follow-up. Further, changes in parent responses were related to changes in parent-reports of child disability. This finding may reflect a link between parent’s perception of their child’s improvement and their willingness to reduce unhelpful responses. On the other hand, changes in parents’ responses did not depend on changes in child pain levels, meaning parents were able to learn how to respond more effectively to their child’s pain regardless of changes in their child’s pain. This is important because IIPT programs typically focus more on improving the patient’s level of functioning and engagement in valued activities, rather than controlling or reducing pain.
Interestingly, the link between changes in parent responses and improvements in child pain-related functioning suggests that it may be beneficial for parents to observe improvements in their child’s functioning during IIPT, whether it is through direct observation of therapies or a video recording of their progress. An important next step will be to evaluate the content of parent interventions within IIPT to understand what aspects of parent interventions are most influential to facilitating changes in parental responses and downstream improvements in youth. Future studies might also examine changes in parents’ own stress and emotional distress levels during IIPT, to determine if current interventions are effective at helping parents’ own coping, and not just their responses to child pain. In addition to addressing these next steps, future studies may also address some limitations in the current study. Most notably, this observational study did not include a control group, for example of families on a waiting list for intensive treatment, which would increase confidence that the intervention was responsible for these changes.
In closing, while it can be overwhelming and challenging to figure out how to respond to a child who is experiencing chronic pain, in the context of intensive treatment, these parents did show significant changes in their ability to respond effectively to their child’s pain experience. This may relate to improvements in their ability to manage their own distress and emotion about their child’s pain, and may also related to improvements in child functioning, though the direction of these relationships requires further investigation.
About the authors
Dustin P. Wallace is a psychologist at Children’s Mercy Hospital in Kansas City. He is the Director of Behavioral Health for the Rehabilitation for Amplified Pain Syndromes (RAPS) program, an intensive program for adolescents disabled by chronic pain, and is Associate Professor of Pediatrics at the University of Missouri-Kansas City School of Medicine. His clinical and research interests center on the use of acceptance-based interventions to help families cope with chronic pain, and to directly alleviate pain along with its physical, social, and emotional impacts.
Melissa Pielech is a fifth year graduate student in the Clinical Psychology PhD program at the University of New Mexico (UNM) working with Kevin Vowles, Ph.D. She is passionate about working with pediatric pain populations through research and clinical work in measure development, evaluation of interdisciplinary pain rehabilitation outcomes, assessment of caregiver functioning, and examination of opioid use with pediatric populations. This summer she begins her clinical internship at Brown University in the Pediatric Psychology track.
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