Chronic pain is an ongoing challenge for many children living with dyskinetic subtypes of cerebral palsy (CP), according to a new study that emphasizes the need to listen to the voices of those affected, both for caregivers and in the context of CP pain research.
The study, “The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy,” was published in BMC Pediatrics.
Different subtypes of CP can be classified based on the most common symptoms, with the majority of cases considered spastic, which is characterized by muscle rigidity. Dyskinetic subtypes of CP are characterized instead by dyskinesia — uncontrolled muscle movements.
Pain can be an issue for people with dyskinetic CP, arising both from the condition itself and as a result of treatment (e.g., surgery). Often, particularly for affected children, pain is measured by proxy — that is, by asking parents, doctors, and other caregivers. While this may be unavoidable in specific cases in which direct communication with the child is impossible, many children with CP are able to communicate their own feelings, either verbally or through augmentative and alternative communication (AAC).
In this new study, researchers assessed the lived experiences, in terms of dyskinesia and pain, for children with dyskinetic CP.
“The unique physical context of children with dyskinetic CP is likely to complicate pain management, making them vulnerable to not having their voices heard and an important group to learn more from their experiences,” the researchers wrote.
The study consisted of two parts. In the first, 25 children and adolescents with dyskinetic CP completed a survey about their pain-related experiences. This group included 15 males and 10 females, the average age was 13.3 years, and there were 14 with purely dykinetic CP, while the remaining 11 had “mixed” dyskinetic and spastic CP.
The Faces Pain Scale Revised (FPS-R) was used to measure pain on a scale from 1 to 10 (with 10 representing the worst pain possible). Of the 25 participants, all but two reported at least some chronic pain. For the majority (13 children), this pain was moderate in intensity (between 4 and 6 on the FPS-R).
In the second part of the study, eight of the survey respondents, chosen purposefully to reflect a range of experiences, participated in interviews about their experiences with dyskinesia and pain. Half of the participants communicated verbally; the other half used AAC. The researchers identified three overarching themes addressed in these interviews.
The first theme concerned the effect of dyskinesia on everyday life. Attitudes varied across individuals; some children felt their dyskinetic movements were such a normal part of their everyday life that they “don’t notice them.”
For others, dyskinesia was a source of annoyance, frustration, anger, and/or sadness, particularly in how they were perceived to limit the extent to which children could participate in activities. For example, one participant expressed anger that a future goal, to “jump out of plane,” was seen as unattainable.
Children often reported they and their families used shorthand language to talk about dyskinetic movements, such as “flapping like a chicken” or having a “tricky body day.”
“These child-like expressions helped give context to dyskinesia experiences, allaying feelings of uncertainty or anxiety surrounding the sudden and unpredictable nature of their bodily movements,” the researchers wrote.
The second theme centered around the effects of chronic pain. As with dyskinesia, there were a range of opinions, and many children expressed frustration: “I think it makes me feel sort of frustrated that it’s [the pain is] happening and I can’t do something,” one said. Other children emphasized how pain can lead to feelings of isolation and loneliness, particularly when it gets in the way of taking part in fun activities or spending time with loved ones.
Some of the children reported pushing through their pain to do these things anyway, but for others, pain was too intense to do so. One participant described their dyskinesia-induced pain as like a “crash with [a] rubbish truck.”
“All participants expressed great confidence in their carers’ capacity to effectively pick up and respond to their pain,” the researchers noted.
The final theme centered on strategies to cope with pain. Interviewees tended to emphasize fun things they could do to distract themselves — activities that range from cuddling with parents to watching videos online.
Overall, this study highlights some of the challenges faced by young people living with dyskinetic CP, and it emphasizes the need to include their voices in research.
“This new knowledge helps to improve understanding of specific pain issues facing children and adolescents with CP and dyskinesia,” the researchers wrote.