Lived experiences of pain in children and young people with cerebral palsy

Ostojic, Katarina; Sharp, Nancy J.; Paget, Simon P; Morrow, Angela M

doi:10.1111/dmcn.15061

Cited by 11 publications

(7 citation statements)

References 23 publications

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“…Because pain in any disease is phenomenological in nature and this feature cannot be denied [26] . Pain challenges are often internal and often subjective [27] . Cancer pain and its treatments are unique experiences that vary depending on age, gender, type of cancer, the stage of the disease and treatment [28] .…”

Section: Discussionmentioning

confidence: 99%

Understanding Cancer Patients' Lived Experience of Pain through Metaphors: A Qualitative Study

Raiisi

Riyassi²

2022

IJMPP

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The purpose of this study was to investigate the lived experience of pain metaphors in cancer patients. Method and Materials:The method of this study was qualitative with hermeneutic phenomenological approach. The study population included all cancer patients in Tehran in 2021-2022 who experienced pain from cancer and its treatment. According to the theoretical saturation rule, 20 cancer patients in stages 2 and 3 of the cancer were selected by purposive method and interviewed in-depth and semi-structured manner. The interview lasted from 40 to 90 minutes. The time and place of the interviews were determined by the participants. Questions with a general question as to what you analogized your experience with cancer and its treatments. After each interview and recording it, the content of the interview was written in fully. The extracted data were analyzed using the method of hermeneutic analysis of Diekelmann et al. (1989). Findings: According to interpretive hermeneutic analysis; lived experiences of pain in cancer patients are 4 main themes including; the metaphor of lived war, the metaphor of lived scheduled pain cage, the metaphor of living in dark future with pain and the metaphor of lived with overload pain. Conclusion: To conclude, metaphors have important role in pain expressions. Researchers suggest cognitive therapies to change metaphors of pain.

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Section: Discussionmentioning

confidence: 99%

Understanding Cancer Patients' Lived Experience of Pain through Metaphors: A Qualitative Study

Raiisi

Riyassi²

2022

IJMPP

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“…Three recent qualitative studies have explored the pain experiences of children with CP aged 8–18 years [ 15 , 19 , 20 ]. A study of 14 children with varying physical and cognitive abilities resulted in the main theme of ‘I have to obey my pain’ [ 15 ].…”

Section: The Lived Experience Of Pain In Cp: the Perspectives Of Chil...mentioning

confidence: 99%

Chronic pain in children and young people with cerebral palsy: a narrative review of challenges, advances, and future directions

Harvey,

Smith,

Smith

et al. 2024

BMC Med

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Background Cerebral palsy (CP), the most common physical disability of childhood, is often accompanied by a range of comorbidities including pain. Pain is highly prevalent in children and young people with CP, yet has been poorly understood, inaccurately assessed, and inadequately managed in this vulnerable population. This narrative review presents recent research advances for understanding and managing pain in children and young people with CP, focusing on chronic pain, and highlights future research directions. Main body Pain prevalence rates in CP vary due to different methodologies of studies. Recent systematic reviews report up to 85% of children experience pain; higher in older children, females, and those with dyskinesia and greater motor impairment. Research examining the lived experience perspectives of children and their families demonstrate that even those with mild motor impairments have pain, children want to self-report pain where possible to feel heard and believed, and management approaches should be individualized. Notably, many children with cognitive and communication impairments can self-report their pain if adjustments are provided and they are given a chance. Past inadequacies of pain assessment in CP relate to a focus on pain intensity and frequency with little focus on pain interference and coping, a lack of tools appropriate for the CP population, and an assumption that many children with cognitive and/or communication limitations are unable to self-report. Recent systematic reviews have identified the most reliable and valid assessment tools for assessing chronic pain. Many were not developed for people with CP and, in their current form, are not appropriate for the spectrum of physical, communication, and cognitive limitations seen. Recently, consensus and co-design in partnership with people with lived experience and clinicians have identified tools appropriate for use in CP considering the biopsychosocial framework. Modifications to tools are underway to ensure feasibility and applicability for the spectrum of abilities seen. Conclusion Recent research advances have improved our understanding of the prevalence, characteristics and lived experience of chronic pain, and refined assessment methods in children and young people with CP. However, the very limited evidence for effective and novel management of chronic pain in this population is where research should now focus.

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“…Cerebral palsy (CP) can cause chronic pain. 1 One important cause is hip joint displacement or dislocated hip joint with cartilage damage in people with spastic CP. 2 Induced pain sites often occur in the hip, thigh, neck, knees, feet, and lower back.…”

mentioning

confidence: 99%

“…Cerebral palsy (CP) can cause chronic pain 1 . One important cause is hip joint displacement or dislocated hip joint with cartilage damage in people with spastic CP 2 .…”

mentioning

confidence: 99%

What can post‐stroke central pain teach us about chronic pain in adolescents with cerebral palsy?

Huang

2021

Develop Med Child Neuro

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Lived experiences of pain in children and young people with cerebral palsy

Cited by 11 publications

References 23 publications

Understanding Cancer Patients' Lived Experience of Pain through Metaphors: A Qualitative Study

Understanding Cancer Patients' Lived Experience of Pain through Metaphors: A Qualitative Study

Chronic pain in children and young people with cerebral palsy: a narrative review of challenges, advances, and future directions

What can post‐stroke central pain teach us about chronic pain in adolescents with cerebral palsy?

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