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Understanding Pediatric Pain in Cultural and Medical Context

A recent IASP Virtual Series on Pain & Expo workshop focused on sociocultural influences on children’s pain.

by Angela Pascale


16 February 2021


PRF News

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A recent IASP Virtual Series on Pain & Expo workshop focused on sociocultural influences on children’s pain.

Understanding pain experienced in childhood is crucially important, as pediatric pain sets the stage for both pain and healthcare experiences into adulthood. Of the many influences on childhood pain, the sociocultural and medical context in which pain is experienced and communicated plays a critical role. To bring attention to this important issue, “From Media to Medicine: Making Sense of Children’s Pain in Cultural and Medical Context,” an Area for the Lived Virtual Experience (ALiVE) workshop at the IASP Virtual Series on Pain & Expo, addressed gaps in research as well as how to further the understanding of sociocultural influences on children’s pain. The workshop took place on September 24, 2020.

 

Session speakers included Melanie Noel, University of Calgary, Canada, who discussed the representation of pain in children’s popular media; Lauren Heathcote, Stanford University, Palo Alto, US, who focused on constructs of pain uncertainty, diagnosis, and recovery within the medical setting; and Carley Ouellette, Hamilton Health Sciences, Ontario, Canada, who provided a lived experience of pain perspective, having experienced pain from complex regional pain syndrome as a child. Jennifer Stinson, Hospital for Sick Children, Toronto, Canada, moderated the session.

 

The take-home message of the workshop was that when it comes to understanding the pediatric pain experience, context matters, including wide cultural influences like popular media as well as the medical environment in which children receive care and parents interact with their kids.

 

The representation of pain in children’s popular media

“Media is a powerful influencer” of social responses in children. So said Noel, who kicked off the session. Children today are exposed to popular media more than ever before, with over 90% of kids exceeding the one-hour limit of screen time recommended by the American Academy of Pediatrics, Noel said. This has enormous implications for pediatric pain, considering popular media’s ability to shape attitudes, beliefs, and values (Goodyear et al., 2018).

 

Noel reviewed a previous study that inspired her later work, looking at whether toddler-aged children developed empathy for pain versus empathy for sadness (Bandstra et al., 2011). She said the findings indicated that “young children learn to empathize with other persons’ pain later than they learned to empathize with another person’s sadness.” This finding brought Noel and her colleagues to wonder about the possibility of parent interactions with their child as an influence on the child’s perception of pain.

 

To investigate this possibility, a 2019 study led by Noel examined how parents discuss pain with their children compared to sadness (Pavlova et al., 2019). It turned out that parents talked about sad and painful events differently. More specifically, parents discussing sad events with their children did so in a constructive way, for instance, by being elaborative and by processing negative emotions with their child. But when it came to pain-related events, parents were not as elaborative and provided less validation of what their child was feeling in regard to pain.

 

These findings brought Noel and colleagues to ask: What leads parents to interact so differently with their children when it comes to pain? To answer that question, Noel stressed the importance of having a broad perspective and asking, “What is it about our society and culture around pain that may be trickling down into the interactions that parents are having with kids?”

 

To further highlight these broad sociocultural influences, Noel turned to a recent project from her and her colleagues, since published in PAIN, that looked at how children’s popular media portrays childhood pain (Mueri et al., 2020). The study looked at how characters in popular North American movies and television shows who experienced pain reacted to it. Further, the study examined gender differences, assessing how the pain of boy and girl characters was portrayed, and how boy and girl characters responded to observing the characters’ pain. Lastly, another part of this project (not yet published) examined parents' and children’s reactions to the media portrayals.

 

The study participants included 60 parent-child dyads (30 mother-child and 30 father-child dyads) with children aged four to six years. Study participants were separated and watched media clips, followed by interviews where the parent and child would discuss together what they watched. Parents were also interviewed separately to discuss their thoughts on the media.

 

The study found a shocking 454 instances of pain, equating to more than eight pain instances per hour of media. The researchers identified depictions of various types of pain including injury-related pain (59% of characters), violent pain (pain that was intentionally inflicted, 20%), and everyday pain (just 19%). Noel said there were stark gender differences, too, with 78% of pain instances occurring in boy characters and 22% in girl characters, with observers showing greater concern for the latter.

 

Further, out of a total of 339 pain instances (78% of total pain instances), another character witnessed the pain. Of these 339 pain instances, 41% of observers had no verbal or nonverbal response to the character in pain; the most common verbal response was humor (16% of instances). So it was notable that many observers did not respond, and for the ones who did respond, it was with humor, a finding that points to a notable lack of helpful responses from movie/show characters that children could otherwise learn from. Further, observers who did respond showed a lack of empathy for the character experiencing pain.

 

Noel also discussed unpublished findings from the second part of the project. She and her colleagues discovered that many parents found that pain was portrayed in a “slapstick comedy” style, such as unrealistic pain (i.e., pain that would cause real harm but jokes were made about it nonetheless). Some parents were aware of gender differences in the portrayals of girls' pain versus boys' pain, though there were parents who did not notice these differences.

 

What are the major takeaways of Noel’s study? One is that pain is extremely prevalent in children’s popular media, and another is that there are glaring gender differences in the depiction of pain. Further, Noel said that “there is a disconnect between the types of pain that children experience in daily life and the types of experiences they routinely see in popular media.”

 

Noel said that further studies are needed to better understand prominent sociocultural influences, such as popular media, that influence the emergence of gender differences in pain. How pain is portrayed in media that adolescents watch, as well as racial and ethnic differences in the media portrayal of pain, are also high on the research agenda.

 

Navigating uncertainty in children’s chronic pain diagnosis and recovery

The second speaker, Lauren Heathcote, discussed medical constructs of pain uncertainty, diagnosis and recovery. She mentioned that the desired path of chronic pain is from symptom, to identification of a cause and lastly, to a cure. However, the actual path of chronic pain is significantly less straightforward, and uncertainty has a lot to do with that.

 

Heathcote said that uncertainty plays a role in all aspects of the pathway. For example, when receiving a diagnosis, many people have uncertainty about whether they will get better or whether they will always be in pain. There is also uncertainty with regard to treatment, with patients wondering if they are receiving the best treatment and whether it will work.

 

Delving deeper into the construct of uncertainty, Heathcote said that a patient’s uncertainty about their diagnosis is a crucial factor in how that patient views the diagnosis. One recently offered definition of diagnostic uncertainty is that it is a “subjective perception of an inability to provide an accurate explanation of the patient’s health problem” (Bhise et al., 2018). But Heathcote noted that this definition is mainly clinician focused and pointed to a more recent wave of pain research investigating diagnostic uncertainty from the patient's or caregiver’s perspective.

 

Heathcote’s own work has been a part of that wave. In a study now under review, she and her colleagues investigated diagnostic uncertainty in a sample of 126 parents and 91 youth aged eight to 18 with chronic pain. To assess diagnostic uncertainty, three dichotomous items (yes or no) were asked of both parent and child.

 

The first item was, “I have been given a clear label/diagnosis for my (my child’s) chronic pain.” About 50% of children and 60% of parents answered yes to this question. The second item was, “I have been given a clear explanation for my (my child’s) chronic pain.” About 50% of parents and children reported they had been given a clear explanation. The last item was, “I think there is something else happening with my (my child’s) chronic pain which the doctors have not found out about yet.” About 50% of children and 40% of parents said yes.

 

The findings from this study show just how prevalent diagnostic uncertainty is, both for the child with a chronic pain condition and for the caregiver. Heathcote said more work is needed to establish causal relationships between diagnostic uncertainty and health outcomes such as health-related quality of life.

 

But uncertainty does not end once patients have a clear diagnosis; there is also the uncertainty of recovery. Here, Heathcote pointed to auxiliary findings from a trial called GET Living: Graded Exposure Treatment for Children and Adolescents With Chronic Pain. This trial addresses pain-related fear with graded exposure treatment (Simons et al., 2020).

 

Data from this treatment program tie into Heathcote’s own work, currently under review, investigating the uncertainty of recovery in 15 patients aged eight to 17 and accompanying parents. For this longitudinal study, the researchers coded ongoing sessions, throughout the child’s treatment, between the parents and the treatment provider, with regard to the parents' feelings about their child’s treatment and how the treatment was progressing.

 

In total, 46 sessions were coded, with an average number of sessions of roughly three per parent, according to parent affect (positive, negative, or humor/laughter) and various qualitative content from the interviews. Affect and qualitative content were assessed at the beginning, middle, and end of the child’s treatment. For the qualitative content piece of the study, coding was done by separating the content into various categories such as treatment outlook, advice seeking, protectiveness, or optimism.

 

Heathcote reported that positive affect went up, and negative affect went down, over the course of treatment. Humor/laughter affect was at its highest level in the middle of the child’s treatment. Another main finding was that the most relevant qualitative content influencing parents’ uncertainty about their child’s recovery was both treatment outlook (confidence that the treatment would work) and optimism about their child’s recovery from pain. Further, both treatment outlook and optimism increased slightly over the course of treatment.

 

Lastly, Heathcote pointed to findings with regard to a dichotomous item from the qualitative content of the sessions. This item characterized a parent’s orientation toward their child’s chronic pain either as resolved (defined “as a change of mind set from the initial mourning and distress that accompanies the onset of caring for a child with chronic pain”) or unresolved (continuing to express “difficulty with dissociating themselves from their child’s pain or preoccupation with why their child has chronic pain”).

 

The results of this item indicated that parents had a more unresolved orientation toward their child’s pain at the start of their child’s treatment but became more resolved as treatment continued. Heathcote said these preliminary results reveal the importance of assessing parents’ uncertainty of their child’s treatment recovery over the course of time.

 

Heathcote concluded by saying more work is needed to understand diagnostic uncertainty as well as uncertainty in both recovery and prognosis. With a better understanding, psychologists could then develop interventions to address feelings of uncertainty and thus improve outcomes for kids with pain.

 

Lived experience of pediatric chronic pain

The next speaker was Carley Ouellette, who discussed her own lived experience of chronic pain, as well as her experience as a nurse. Ouellette’s pain story began at the age of 12, when she received a diagnosis of complex regional pain syndrome (CRPS) after two accidents. She was referred to the Sick Children Chronic Pain Clinic in Toronto, Canada, where she was followed for eight years and then transitioned to adult care. She emphasized that the interdisciplinary team, including medical providers and psychologists, was critical to her recovery.

 

Ouellette was inspired to embark on a professional career in pain research based on her experience at the Sick Children Pain Clinic, where she was exposed to nursing care as well as clinical research. She ended up doing clinical research there and also applied to nursing school. She told the audience that in February of last year, she completed her master's of nursing degree in clinical research, and now focuses on virtual remote monitoring and how to better support chronic pain patients in communities following surgery.

 

Ouellette ended by emphasizing the importance of her experience as a pediatric chronic pain patient in shaping her professional career. She was amazed at what nurses do for patients in their time of need, which made her feel strongly about giving back what she learned from others.

 

Together, the three sessions highlighted the importance of having a wide-ranging outlook when considering the experience of pediatric pain. As Noel illustrated, examining broad sociocultural influences and parent interactions with their children is crucial to understand kids’ pain experiences. Heathcote showed that the child’s and caregiver’s feelings of uncertainty about diagnosis and recovery have critical implications for understanding the trajectory of chronic pain. Lastly, as Ouellette’s arc from patient to researcher demonstrates, the lived experience of pain offers a perspective that not only benefits the research team but can even launch a professional career.

 

Angela Pascale is a PhD student at Virginia Commonwealth University, Richmond, US, and a PRF Correspondent.

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