Parental Catastrophizing Worsens Sickle Cell Disability

Nancy A. Melville

May 31, 2016

AUSTIN, Texas — The negative effects of pain catastrophizing are underscored in new research indicating that even the catastrophizing of a parent can have an adverse effect on function in children with sickle cell disease. Interestingly, the effect is not seen in protective parents who do not catastrophize pain, the researchers report.

"Our findings are an important step forward to extend the literature in pediatric sickle cell disease because we are finding consistent patterns that are known to occur in other chronic pain conditions in youth, that is, the key role that parents can play in how children with sickle cell disease cope with pain," first author Soumitri Sil, PhD, a pediatric psychologist and assistant professor of pediatrics at Emory University School of Medicine, Atlanta, Georgia, told Medscape Medical News.

Approximately 23% of youth with sickle cell disease experience chronic pain, which can include moderate to severe functional disability. Although the negative effects of overly protective parenting and catastrophizing on children have been documented in other conditions, research on the influence of those factors on the unique chronic pain associated with sickle cell disease has been lacking.

The new study, presented here at the American Pain Society (APS) 35th Annual Scientific Meeting, involved 40 adolescents (mean age, 14 years) with chronic pain related to sickle cell disease, defined as pain three or more days a week, persisting for 3 or more months.

The adolescents completed measures of pain and disability on the Functional Disability Inventory, and their parents completed measures on the Pain Catastrophizing Scale and parenting behaviors in response to pain (Adult Responses to Children's Symptoms).

The results showed a significant two-way interaction between protective parenting and parent catastrophizing in predicting higher pain intensity and frequency, and increased adolescent disability (P < .01).

Parents reporting high levels of pain catastrophizing who had high engagement in protective parenting behaviors were associated with severe levels of child disability (P < .05).

In contrast, however, protective parenting was not associated with disability when parents had low levels of catastrophizing (P > .05).

"Our findings suggest that children and adolescents in chronic sickle cell pain are at risk for higher levels of physical impairment when their parents engage in high levels of catastrophizing thinking about their child's pain and engage in high levels of protective parenting behaviors," Dr Sil said.

"The negative effect on disability was not surprising because children and adolescents may end up with fewer opportunities to learn how to effectively deal with their chronic pain and continue to engage in the activities that are important for their overall quality of life," Dr Sil added.

For example, parents may rearrange activities, anticipate a child's needs, complete tasks for them, and allow them to stay home from school and restrict social activities, all in well-intending efforts to try to prevent an increase in pain.

"For youth who are managing chronic pain, it is important for them to learn how to handle pain and still do the activities that are important to them and have a good quality of life," Dr Sil said.

Dr Sil noted, however, that pain associated with sickle cell disease may be more complex than other chronic pain conditions.

"Even though there are many comparisons that can be drawn between sickle cell disease and other chronic pain conditions (such as chronic pain usually begins during adolescence, has negative consequences on physical, emotional, and social domains of functioning), sickle cell disease is a genetic disease and sickle cell pain may be associated with disease-related medical complications," Dr Sil explained.

"So there is still much we need to learn and understand about the role of catastrophizing in sickle cell disease."

In the meantime, clinicians should encourage patients and families to learn new strategies to allow for improved coping with pain, Dr Sil said.

"For example, current psychological treatments for chronic pain, such as cognitive-behavioral therapy, have been found to be effective in improving daily functioning and reducing pain intensity by reducing catastrophic thinking and beliefs about pain and improving confidence and sense of control over pain."

"These treatments also can teach parents strategies of what they can do to help their child deal with pain better."

The study adds valuable insights on how parental catastrophizing can play a role in sickle cell disease, said Tonya M. Palermo, PhD, professor of anesthesiology, adjunct professor, pediatrics and psychiatry, at the University of Washington and associate director of the Center for Child Health Behavior and Development at Seattle Children's Research Institute, Seattle, Washington, told Medscape Medical News.

"It is unknown whether these same parent factors (of protective parenting and catastrophizing) may be important in the context of pediatric sickle cell disease," she said. 

"Thus the findings add to this body of research and highlight the importance of considering parent behaviors in developing pain management interventions for children with sickle cell disease."

The findings regarding protective parenting without catastrophizing raise questions about other factors that may affect children's outcomes, Dr Palermo added.

"Parents who are high on catastrophizing worry about their child's pain and may focus even more attention on the child's pain," she explained.

"However, what is missing from these studies is an understanding of positive parenting behaviors. Perhaps the parents who have lower levels of catastrophizing are also engaging in some positive forms of communication or support of their child and this is what is reducing the negative effects of protectiveness."

"More research is needed to better characterize the range of parent behaviors that may influence pediatric sickle cell disease pain," she said.

The study received funding from Emory + Children's Pediatric Seed Grant. Dr Sil and Dr Palermo have disclosed no relevant financial relationships.

American Pain Society (APS) 35th Annual Scientific Meeting. Abstract 154. Presented May 13, 2016.

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