"Why Isn't It Going Away?": A Qualitative Exploration of Worry and Pain Experiences in Adolescents with Chronic Pain.
Abstract
Introduction The role of cognition is central to the fear avoidance (FA) model of chronic pain (CP), which emphasizes the importance of catastrophic pain interpretations and has been shown to be applicable to pediatric CP populations. However, while we know that pain catastrophizing plays a distinct role in influencing outcomes for children with CP, we know little about the specifics of how young people with CP experience catastrophizing and worry, as well as their general pain beliefs. Objective To qualitatively explore beliefs about and experiences of worry and pain among a purposeful sample of adolescents with CP. Methods Individual semistructured interviews with 12 adolescents (aged 12–17) with varying forms of CP attending an outpatient pain clinic in a general children's hospital. Relevant psychometric measures were administered orally to further inform the data. Data were analyzed using critical realist thematic analysis. Results Three themes and one subtheme were identified. Themes were 1) the worry ripple: mind, body, and behavior (subtheme: worry content: personal competence and health); 2) the pain mystery: living in a "scribble of black" ; and 3) the resist or avoid conundrum. Conclusions The findings highlight the need for psychological interventions targeting acceptance of uncertainty and also informing education on mind/body connections in adolescents with CP.
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Claims the paper makes
15 of 39 cited sources checked · 14 supported · 0 flagged · accuracy not yet measured
- Interpretationcitation
The very experience of having CP, the associated uncertainty, and the potential drain of pain on cognitive resources are together likely to further muddy the process of threat appraisal and coping skills development.
“However, we posit that the very experience of having CP, the associated uncertainty, and the potential drain of pain on cognitive resources [41], are together likely to further muddy the process of threat appraisal and coping skills development.”
Quote in the paperSubstantial claim1 of 1 sources checked- cites [41] Moriarty, 2011, The effect of pain on cognitive function: A review of clinical and preclinical research, Prog Neurobiol source
- Study design and conductcitation
The current study lacked exploration around caregiver responses to pain, which is an important feature of the adapted pediatric FA model.
“The current study has a number of limitations, including the lack of exploration around caregiver responses to pain, which is an important feature of the adapted pediatric FA model [6].”
Quote in the paperNot a substantial claim1 of 1 sources checked- cites [6] Asmundson, 2012, Pediatric fear-avoidance model of chronic pain: Foundation, application and future directions, Pain Res Manag source
- Findingown data
Participants, particularly those who self-identified as frequent worriers, strongly recognized a negative effect of worry in that it led to avoidance of activity.
“On the flip side, participants (particularly those who self-identified as frequent worriers) strongly recognized a negative effect, in that worry led to avoidance of activity: “It gets into your head about things, and like maybe you could be fully capable of doing something but like worry would stop you doing it” (Beyonce);”
Quote in the paperSubstantial claim - Findingown data
The mean total score for the Pain Catastrophizing Scale, Child Version was 28.58 (SD 9.86).
“The mean total score for the PSC-C (SD) was 28.58 (9.86); possible scores range from 0 to 52, with higher scores representing greater pain-specific catastrophizing.”
Quote in the paperNot a substantial claim - Findingown data
Participants identified worry's propensity to intensify into potentially more chronic states of distress.
“Participants went on to note other ways that the influence of worry could be recognized, identifying its propensity to intensify into potentially more chronic states of distress:”
Quote in the paperSubstantial claim
- Findingreasoning
The state of chronic apprehension can be seen explicitly in participants' descriptions of the everyday expectation of pain and associated daily unpredictability in the pattern of pain.
“This state of chronic apprehension can be seen explicitly in participants' descriptions of the everyday expectation of pain and associated daily unpredictability in the pattern of pain:”
Quote in the paperSubstantial claim - Findingown data
Worry was experienced as a fluid process liable to cause impact at various strands of the self.
“Worry was experienced as a fluid process that is liable to cause impact at various strands of the self.”
Quote in the paperSubstantial claim - Findingown data
Worry impinged upon mental health.
“and impinged upon mental health: “It can affect your mental health.You can be saddened by it or more extreme versions of that” (Millie).”
Quote in the paperSubstantial claim - Findingown data
Other participants could identify based on their own experiences where worry sometimes showed up more generally within the body.
“Other participants, however, could identify based on their own experiences where worry sometimes showed up more generally within the body:”
Quote in the paperNot a substantial claim - Findingown data
The mean total score for the Pediatric Quality of Life Inventory was 65.45 (SD 15.96) on a 0-100 transformed scale.
“Finally, the mean total score for the Peds QL scale (SD) was 65.45 (15.96) on a 0-100 transformed scale, with higher scores reflecting better health-related quality of life, which places our cohort midway between previously reported mean scores of 72 for juvenile arthritis [36] and 59 for chronic pain [37].”
Quote in the paperNot a substantial claim - Findingown data
The power of uncertainty was such that one participant, although at the time of interview he had found a treatment for his chronic pain that appeared to be effective, remained concerned that pain might re-emerge in another way and continue to affect his life.
“The power of this uncertainty was such that one participant, although at the time of interview he had found a treatment for his CP that appeared to be effective, remained concerned that pain might re-emerge in some another way and continue to affect his life:”
Quote in the paperNot a substantial claim - Findingown data
One participant, Richie, described a "ripple effect" tendency for worry to breed other worries.
“One participant, Richie, spoke to the fluidity of worry in terms of what he called the “ripple effect” tendency for worry to breed other worries:”
Quote in the paperNot a substantial claim - Findingown data
Participants frequently conceptualized worry as a cognitive process with a direct and perhaps primary impact on thinking patterns.
“Participants frequently conceptualized worry as a cognitive process with a direct and perhaps primary impact on thinking patterns.”
Quote in the paperSubstantial claim - Findingown data
At its most basic level, the theme reflects a pattern of functional resistance in which participants described ways pain impacted daily functioning and active steps they took to push through to continue valued activities.
“At its most basic level, this theme reflects a pattern of “functional resistance”-that is, participants described the countless ways that pain impacted their daily functioning and followed this by detailing the active steps they took to “push through” (Harry), “stick it out” (Millie), “get up and get on with it” (Delilah), “push it to the side” (Tara), in order to continue engaging in valued activ”
Quote in the paperSubstantial claim - Findingown data
Two primary categories of worries were identified by participants: personal competence worries and health-related worries.
“Two primary categories of worries were identified by participants: personal competence worries and health-related worries.”
Quote in the paperSubstantial claim - Findingown data
The mean total score for the Penn State Worry Questionnaire for Children was 21.5 (SD 12.14).
“The mean total score for the PSWQ-C (SD) was 21.5 (12.14); possible scores range from 0 to 42, where higher scores reflect higher levels of worry, placing our cohort mean within the range found for children with clinical levels of anxiety and between the 80th and 90th percentiles of a community sample [31,35].”
Quote in the paperNot a substantial claim - Findingown data
Despite considerable variation in the type and trajectory of pain, chronic pain was consistently associated with uncertainty and unpredictability.
“An overarching commonality in participants' conceptualization and meaning of the pain experience was that despite considerable variation in the type and trajectory of pain, CP was consistently associated with uncertainty and unpredictability.”
Quote in the paperSubstantial claim - Findingown data
When participants were asked to describe their cognitions when their pain was at its worst, there was a narrowing of experience into pain-specific cognitions that continued to center on the fundamental uncertainty of the experience.
“At the more “acute” level, when participants were asked to describe their cognitions when their pain was at its worst, there was a narrowing of experience into painspecific cognitions that continued to center on the fundamental uncertainty of the experience:”
Quote in the paperSubstantial claim - Findingown data
Worry negatively impacted performance.
“impacted performance negatively: “In the test, you just forget everything” (Leslie);”
Quote in the paperNot a substantial claim - Findingown data
The active response to pain involves a more complex story of constant navigation and negotiation stemming from competing emotional responses of anger and fear.
“At times, this was reported as a straightforward process of active resistance, but further exploration suggested a more complex story of constant navigation and negotiation, stemming from competing emotional responses: anger and fear.”
Quote in the paperSubstantial claim - Findingown data
Participants referred to the positive effect of worry on behavior in that it promoted caution and productivity, helping them to take care and work toward deadlines.
“Participants referred to the positive effect of worry on behavior in that it promoted caution and productivity, helping them to take care and to work toward deadlines.”
Quote in the paperNot a substantial claim - Findingown data
Worry was conceptualized as having the ability to influence behavior and emotion in both helpful and unhelpful ways.
“Finally, worry was conceptualized as having the ability to influence behavior and emotion in both helpful and unhelpful ways.”
Quote in the paperSubstantial claim - Findingown data
These categories of worry were common across the data set.
“These categories of worry were common across the data set.”
Quote in the paperNot a substantial claim - Findingown data
From participants' narratives, there is a clear sense of pain as unpredictable.
“From participants' narratives, we get a clear sense of pain as an unpredictable: “There's no logic to it. ... It is just like the pain has decided to like hurt your back” (Beyonce).”
Quote in the paperSubstantial claim - Findingown data
Fear was less frequently identified explicitly but could be inferred from pain cognitions referenced, specifically fear of something bad happening if they make the wrong move or overexert their body.
“Fear, on the other hand, was less frequently identified explicitly but could be inferred from the pain cognitions referenced-the fear of something bad happening if they make the wrong move or overexert their body.”
Quote in the paperNot a substantial claim - Findingown data
Cognitive and emotional constructions of the pain experience seemed to center on uncertainty, existing at multiple levels from day-to-day decision-making around pain to treatment efficacy to diagnostic uncertainty.
“Cognitive and emotional constructions of the pain experience seemed to center on uncertainty, existing at multiple levels from day-to-day decision-making around pain to treatment efficacy to diagnostic uncertainty.”
Quote in the paperSubstantial claim - Findingown data
The uncertainty inherent in the CP experience promotes a constant decision-making need that for the current sample was likely still being navigated and negotiated.
“What is clear from the participants' accounts is that the uncertainty inherent in the CP experience promotes a constant decision-making need that for the current sample was likely still being navigated and negotiated.”
Quote in the paperSubstantial claim - Findingown data
Data from psychometric measures suggested that both general and pain-specific worry levels were heightened among this sample.
“The additional fact that data from psychometric measures suggested that both general and pain-specific worry levels were heightened among this sample”
Quote in the paperNot a substantial claim - Findingown data
Participants identified key moments when they felt angry, for example, when they got a migraine on the day of an important event, when a proposed explanation of causation turned out to be incorrect, or when they experienced others as dismissive of the pain experience.
“The former was addressed directly and frequently by participants; they identified the key moments when they felt angry, for example, when they got a migraine on the day of an important event, when a proposed explanation of causation turned out to be incorrect, or when they experienced others as being dismissive of the pain experience:”
Quote in the paperNot a substantial claim - Findingown data
Average scores on the PedsQL indicated that self-reported quality of life for the cohort was consistent with other chronic pain populations.
“Average scores on the Peds QL indicated that self-reported quality of life for our cohort was consistent with other chronic pain populations [36,37].”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites [36] Varni, 2002, The PedsQL™ in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ generic core scales and rheumatology module, Arthritis Rheum source
- cites [37] Gold, 2009, Pain, fatigue, and health-related quality of life in children and adolescents with chronic pain, Clin J Pain source
- Findingown data
Among the current sample, there was evidence of fear responses to pain that could be traced back to uncertainty about the trajectory and expected impact of pain on functioning at an everyday level.
“Among the current sample, there was evidence of fear responses to pain that could be traced back to uncertainty about the trajectory and expected impact of pain on their functioning at an everyday level.”
Quote in the paperSubstantial claim - Findingown data
In the current study, administration of measures such as the PSC-C followed by qualitative explorations of responses allowed for further delineation of specific pain-related fears.
“As such, patients attending pain clinics may benefit from administration of measures such as the PSC-C which during the current study, when followed by qualitative explorations of responses, allowed for the further delineation of specific pain-related fears.”
Quote in the paperSubstantial claim - Interpretationreasoning
The significance of these pain-specific cognitions may lie in a more subtly indicated underlying fear about the future and the potential impact of the pain on participants' lives in the long term.
“The significance of these cognitions may lie in a more subtly indicated underlying fear about the future and the potential impact of the pain on participants' lives in the long term:”
Quote in the paperNot a substantial claim - Interpretationown data
Worry was conveyed as a dynamic force that could lead to stronger states such as stress and anxiety.
“These ideas were paired with worry, conveying worry as a dynamic force that could lead to these stronger states.”
Quote in the paperSubstantial claim - Interpretationown data
The psychometric scores are suggestive of heightened levels of distress and pain-related disability in this cohort compared with population norms.
“These scores are suggestive of heightened levels of distress and pain-related disability in this cohort compared with population norms.”
Quote in the paperNot a substantial claim - Interpretationown data
The cohort's Pediatric Quality of Life Inventory mean places it midway between previously reported mean scores of 72 for juvenile arthritis and 59 for chronic pain.
“Finally, the mean total score for the Peds QL scale (SD) was 65.45 (15.96) on a 0-100 transformed scale, with higher scores reflecting better health-related quality of life, which places our cohort midway between previously reported mean scores of 72 for juvenile arthritis [36] and 59 for chronic pain [37].”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites [36] Varni, 2002, The PedsQL™ in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ generic core scales and rheumatology module, Arthritis Rheum source
- cites [37] Gold, 2009, Pain, fatigue, and health-related quality of life in children and adolescents with chronic pain, Clin J Pain source
- Premisecitation
Day-to-day uncertainty is very similar to what Vlaeyen and Linton called "chronic apprehension," a term that aims to characterize the distress experienced in response to unpredictable threat cues in some pain experiences.
“Day-to-day uncertainty is very similar to what Vlaeyen and Linton [38] called “chronic apprehension,” a term that aims to characterize the distress experienced in response to the unpredictable threat cues in some pain experiences.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [38] Vlaeyen, 2012, Fear-avoidance model of chronic musculoskeletal pain: 12 years on, Pain source
- Interpretationown data
The narratives of the felt experience of worry suggest that worry is a cognitive process intrinsically linked with bodily states.
“Together these narratives of the felt experience of worry suggest that it is a cognitive process that is intrinsically linked with bodily states.”
Quote in the paperSubstantial claim - Study design and conductreasoning
The current study recruited young people with CP from a pain-specific clinic and therefore cannot make conclusions about whether the same processes are present and experienced similarly by children with other chronic illnesses where pain is not central, such as diabetes.
“The current study recruited young people with CP from a pain-specific clinic and therefore cannot make any conclusions about whether the same processes are present and experienced similarly by children with other chronic illnesses where pain is not central, such as diabetes.”
Quote in the paperNot a substantial claim - Interpretationown data
This study increases understanding of cognitive and emotional factors in pediatric CP.
“This study increases our understanding of cognitive and emotional factors in pediatric CP.”
Quote in the paperSubstantial claim - Interpretationreasoning
These findings support the postulation that for young people with CP, uncertainty is a central issue that is liable to combine with fear to impact decisions around functional engagement.
“These findings support the postulation that for young people with CP, uncertainty is a central issue that is liable to combine with fear to impact decisions around functional engagement.”
Quote in the paperSubstantial claim - Interpretationreasoning
In accordance with the FA model, this fear seemed to promote avoidance of activity.
“In accordance with the FA model, this fear seemed to promote avoidance of activity.”
Quote in the paperSubstantial claim
- Classified as probably not a substantial claim. 26
- May combine two claims. 47
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
PremisecitationFor children, a Pain Catastrophizing Scale, Child Version score greater than 26 would be considered high and associated with greater pain-related disability.
“For children, a PCS-C score >26 would be considered high and associated with greater pain-related disability [34].”
Quote in the paperNot a substantial claim1 of 1 sources checked- cites [34] Pielech, 2014, Pain catastrophizing in children with chronic pain and their parents: Proposed clinical reference points and reexamination of the Pain Catastrophizing Scale measure, Pain source
May combine two claims.
PremisecitationA diary study of everyday worries recorded by adolescents with and without chronic pain in the community found no differences in the types of worry between groups, though within the category of health worries pain-related worries were common for both groups.
“A diary study of everyday worries recorded by adolescents with and without CP in the community [15] found no differences in the types of worry between groups, though they did find that within the category of “health worries” pain-related worries were common for both groups.”
Quote in the paperNot a substantial claim1 of 1 sources checked- cites [15] Fisher, 2017, Everyday worry in adolescents with and without chronic pain: A diary study, Psychol Heal Med source
May combine two claims.
InterpretationcitationThe cohort mean Penn State Worry Questionnaire for Children score was within the range found for children with clinical levels of anxiety and between the 80th and 90th percentiles of a community sample.
“The mean total score for the PSWQ-C (SD) was 21.5 (12.14); possible scores range from 0 to 42, where higher scores reflect higher levels of worry, placing our cohort mean within the range found for children with clinical levels of anxiety and between the 80th and 90th percentiles of a community sample [31,35].”
Quote in the paperNot a substantial claim1 of 2 sources checked- cites [31] Chorpita, 1997, Assessment of worry in children and adolescents: An adaptation of the Penn State Worry Questionnaire, Behav Res Ther source
The Between-group comparisons section reports PSWQ-C scores for children with diagnosed anxiety disorders and finds them higher than scores for controls. Table 3 reports scores for a community-school sample, but the paper does not give an 80th–90th percentile range or establish that a score of 21.5 falls between those percentiles. Its clinical comparison supports the general context, not the precise placement claimed. (LLM, conf=0.82)
Experimental — accuracy not yet measured - cites [35] Esbjørn, 2013, Penn State Worry Questionnaire: Findings form normative and clinical samples in Denmark, J Psychopathol Behav Assess source
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductcitationThe psychometric measures have been shown to have good psychometric properties: construct validity, internal consistency, and concurrent validity.
“However, the respective measures have been shown to have good psychometric properties; that is, construct validity, internal consistency, and concurrent validity [29][30][31][32].”
Quote in the paperNot a substantial claim1 of 3 sources checked- cites [29] Crombez, 2003, The child version of the Pain Catastrophizing Scale (PCS-C): A preliminary validation, Pain source
- cites [30] Varni, 2001, PedsQLTM 4.0: Reliability and Validity of the Pediatric Quality of Life InventoryTM Version 4.0 generic core scales in healthy and patient populations, Med Care source
- cites [31] Chorpita, 1997, Assessment of worry in children and adolescents: An adaptation of the Penn State Worry Questionnaire, Behav Res Ther source
Classified as probably not a substantial claim.
PremisecitationThe fear avoidance model posits that pain perceived as threatening and associated with catastrophic thinking is likely to lead to fear and subsequent avoidance behaviors, resulting in functional disability.
“The FA model posits that pain that is perceived as threatening and is associated with catastrophic thinking is likely to lead to fear and subsequent avoidance behaviors, resulting in functional disability [8][9][10].”
Quote in the paperSubstantial claim2 of 3 sources checked- cites [8] Simons, 2012, The fear avoidance model of chronic pain: Examination for pediatric application, J Pain source
- cites [9] Lethem, 1983, Outline of a fear-avoidance model of exaggerated pain perception-I, Behav Res Ther source
- cites [10] Vlaeyen, 1995, Fear of movement/(re)injury in chronic low back pain and its relation to behavioral performance, Pain source
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductcitationPapers on quality in qualitative research were consulted to enhance the integrity of the methodology, informing decisions around sample size, coding, and theme identification.
“Papers on quality in qualitative research were also consulted to enhance the integrity of the methodology, informing decisions around sample size, coding, and theme identification [27,28].”
Quote in the paperNot a substantial claim1 of 2 sources checked- cites [27] Hayter, 2014, Data collection and sampling in qualitative research: Does size matter?, J Adv Nurs
Couldn’t be matched to a paper in Crossref, so it can’t be checked.
- cites [28] Levitt, 2018, Journal article reporting standards for qualitative primary, qualitative meta-analytic, and mixed methods research in psychology: The APA Publications and Communications Board Task Force report, Am Psychol source
May combine two claims.
Findingown dataPain catastrophizing was evident, as per previous research, though evoking these cognitions often required more in-depth exploration, suggesting that some pain fears may not be immediately accessible by clinical interview.
“Pain catastrophizing was evident, as per previous research [11,14], though evoking these cognitions often required more in-depth exploration, suggesting that some pain fears may not be immediately accessible by clinical interview.”
Quote in the paperSubstantial claim2 of 2 sources checked- cites [11] Tran, 2015, Distinct influences of anxiety and pain catastrophizing on functional outcomes in children and adolescents with chronic pain, J Pediatr Psychol source
- cites [14] Vervoort, 2010, Children’s catastrophic thinking about their pain predicts pain and disability 6 months later, Eur J Pain source
May combine two claims.
Findingown dataData from standardized measures indicated that average worry levels were within the clinically elevated range and pain-specific worry was heightened.
“Data from these measures indicated that average worry levels were within the clinically elevated range [31,35] and pain-specific worry was heightened [34].”
Quote in the paperSubstantial claim2 of 3 sources checked- cites [31] Chorpita, 1997, Assessment of worry in children and adolescents: An adaptation of the Penn State Worry Questionnaire, Behav Res Ther source
- cites [35] Esbjørn, 2013, Penn State Worry Questionnaire: Findings form normative and clinical samples in Denmark, J Psychopathol Behav Assess source
- cites [34] Pielech, 2014, Pain catastrophizing in children with chronic pain and their parents: Proposed clinical reference points and reexamination of the Pain Catastrophizing Scale measure, Pain source
Classified as probably not a substantial claim.
PremisecitationThe pediatric fear avoidance model proposed by Asmundson et al. explains functional disability as following directly from escape and avoidance behavior, which follows from fear of pain and pain-related anxiety.
“The pediatric fear avoidance model proposed by Asmundson et al. [6] explains functional disability as following directly from escape and avoidance behavior, which follows from fear of pain and pain-related anxiety.”
Quote in the paperSubstantial claim1 of 1 sources checked- cites [6] Asmundson, 2012, Pediatric fear-avoidance model of chronic pain: Foundation, application and future directions, Pain Res Manag source
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
PremisecitationFisher et al. found no differences in everyday worries among youths with and without CP and found that personal competence worries were common among both groups.
“Fisher et al. [15] found no differences in everyday worries among youths with and without CP and found that personal competence worries were common among both groups.”
Quote in the paperNot a substantial claim1 of 1 sources checked- cites [15] Fisher, 2017, Everyday worry in adolescents with and without chronic pain: A diary study, Psychol Heal Med source
May combine two claims.
Findingown dataThe latter type of health-related worry, the possibility of serious harm, could be considered pain catastrophizing and was often not identified spontaneously but uncovered when responses on the pain catastrophizing questionnaire were explored qualitatively.
“This latter type, which could be considered pain catastrophizing, was often not identified spontaneously but uncovered when responses on the pain catastrophizing questionnaire were explored qualitatively, when participants were asked to explain their scoring decisions, which frequently led to broader discussions around the experience of painspecific worries:”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Findingown dataOne participant, Rory, described that stress and worry caused his pain to worsen and affected his ability to study.
“Well stress and worry, they like, in a lot of people they make them feel sick and then whatever they're stressing about like tests or anything, that's like a big thing with me, like, was with all the pain and I started stressing and it got worse and I wasn't able to study as well as I had hoped.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataPersonal competence worries were related to participants' concerns about performing well in school, work, or hobbies and were identified to varying degrees across all participants and in some instances related to the potential impact of pain on their competence.
“Personal competence worries were related to participants' concerns about performing well in school, work, or hobbies and were identified to varying degrees across all participants and in some instances related to the potential impact of pain on their competence:”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataOnly one other participant directly referred to an association between worry and chronic pain symptoms, suggesting that links between these states were either not salient for most participants or not easily accessed via interview.
“Only one other participant directly referred to an association between worry and CP symptoms, suggesting that links between these states were either not salient for most participants or not easily accessed via interview.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataParticipants were reluctant to give in to pain and reported a socially acceptable message of perseverance.
“Participants were reluctant to give in to the pain, and instead reported a socially acceptable message of perseverance:”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataIn terms of their own health, participants described a range of pain-related worries: the functional impact of chronic pain both now and in the future, what might happen at medical appointments, and the possibility of serious harm coming as a result of pain.
“In terms of their own health, participants described a range of pain-related worries: the functional impact of CP both now and in the future, what might happen at medical appointments, and the possibility of serious harm coming as a result of pain.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataThe third theme describes a complex active response pattern to the pain experience.
“The third and final theme describes the complex active response pattern to the pain experience.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataParticipants frequently acknowledged that pain impacted their functioning, including difficulties attending school, engaging in preferred hobbies, attending social events, and with sleep and energy levels.
“Indeed, over the course of interviews, participants frequently acknowledged the impact of pain on their functioning, citing difficulties attending school, engaging in preferred hobbies, attending social events, and with their sleep and energy levels.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe construction of worry and its impact on thinking was broadly uniform across participants and could be seen to represent a relatively static, though strong, concept within the mind.
“This construction of worry and its impact on thinking was broadly uniform across participants and therefore could be seen to represent a relatively static, though strong, concept within the mind.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataHealth-related worries comprised both concern about one's own health and the health of a family member (two participants).
“Health-related worries comprised both concern about one's own health and the health of a family member (two participants).”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataFor the majority of participants, questions remained around the cause or source of the pain, with these questions maintaining an additional underlying level of uncertainty in the pain experience as a whole.
“Third, for the majority of participants, questions remained around the cause or source of the pain, with these questions maintaining an additional underlying level of uncertainty in the pain experience as a whole:”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataThree main themes were identified: the worry ripple: mind, body, and behavior (with subtheme worry content: personal competence and health); the pain mystery: living in a "scribble of black"; and the resist or avoid conundrum.
“Three main themes were identified: 1) the worry ripple: mind, body, and behavior (subtheme: worry content: personal competence and health); 2) the pain mystery: living in a “scribble of black”; and 3) the resist or avoid conundrum.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataWhile the mind may initially hold worries, worry had a notable ability to take hold of other parts of the self.
“Yet, as worry was explored further it became apparent that while the mind may initially hold worries, the ability of worry to take hold of other parts of the self was notable.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataParticipants' accounts of treatment attempts were often numerous and varied, and often limited in success.
“This understanding is further reinforced in participants' accounts of treatment attempts, often numerous and varied, and often limited in success.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataQualitative analysis illustrated the ways that worry was conceptualized cognitively and emotionally and highlighted the nature of everyday and pain-related worries, some of which show features of catastrophizing.
“Qualitative analysis illustrated the ways that worry was conceptualized cognitively and emotionally and highlighted the nature of everyday and pain-related worries, some of which show features of catastrophizing.”
Quote in the paperSubstantial claimMay combine two claims.
Findingnone givenWorry was conceptualized as a process that initially impacted thinking but soon had other effects such as breeding other worries, and sometimes even worsening pain levels.
“At a broader level, worry was conceptualized as a process that initially impacted thinking but soon had other effects such as breeding other worries, and sometimes even worsening pain levels.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataAmong the current population, the utility of worry was salient, but its potentially negative influence over behavior, emotion, and performance was perhaps more striking in its descriptions.
“However among the current population, while the utility of worry was rather salient, its potentially negative influence over behavior, emotion, and performance was perhaps more striking in its descriptions.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataConstructions of pain as an unpredictable, mysterious, and illogical entity were illuminated, as well as the delicate and constant navigation around this uncertainty in everyday life.
“Beyond this, constructions of pain as an unpredictable, mysterious, and illogical entity were illuminated, as well as the delicate and constant navigation around this uncertainty in everyday life.”
Quote in the paperSubstantial claimMay combine two claims.
Findingnone givenWorry and pain were experienced differently, with worry starting in the mind and then rippling out to the rest of the body and pain being a strong, mysterious force that led to uncertainty at different levels.
“Worry and pain were experienced differently, with worry starting in the mind and then rippling out to the rest of the body and pain being a strong, mysterious force that led to uncertainty at different levels.”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataNarratives revealed both wins and losses: occasions where participants successfully proceeded with activities in spite of pain and were glad to do so, and occasions where they either missed out on planned events or the experience was tainted because of high pain levels.
“Narratives revealed both “wins” and “losses” in this regard-occasions where participants successfully proceeded with activities in spite of their pain and were glad to do so and occasions where they either missed out on planned events or the experience was tainted because of high pain levels:”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataParticipants described frustration with the uncertainty of the pain experience, the mystery around the cause of the pain, and the loss of control over one's life.
“Participants also described frustration with the uncertainty of the pain experience, the mystery around the cause of the pain, and the loss of control over one's life:”
Quote in the paperSubstantial claimMay combine two claims.
FindingreasoningThe uncertainty of pain led to a conundrum of resist or avoid and a constant process of negotiating these.
“The uncertainty of pain led to a conundrum of resist or avoid and a constant process of negotiating these.”
Quote in the paperSubstantial claimMay combine two claims.
FindingcitationParticipants could identify both positive and negative beliefs about worry, a finding in line with worry metacognitions in younger children and metacognitions about pain rumination in adults with CP.
“At a meta-cognitive level, participants could identify both positive and negative beliefs about worry, a finding that is in line with worry metacognitions in younger children [39] and metacognitions about pain rumination in adults with CP [40].”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites [39] Wilson, 2011, Worry, beliefs about worry and problem solving in young children, Behav Cogn Psychother source
- cites [40] Schütze, 2017, I call it stinkin’ thinkin’’: A qualitative analysis of metacognition in people with chronic low back pain and elevated catastrophizing, Br J Health Psychol source
May combine two claims.
Findingown dataCurrent participants identified a range of everyday worries that were not specific to pain and instead centered on concern about personal competence in areas of school, work, and hobbies; only a small number of participants immediately identified pain-related worries.
“Similarly, the current participants identified a range of everyday worries that were not specific to pain and instead centered on concern about personal competence in areas of school, work, and hobbies; only a small number of participants immediately identified pain-related worries.”
Quote in the paperSubstantial claimMay combine two claims.
PremisecitationCognitive behavioral therapy is the most widely investigated psychological treatment for pediatric chronic pain and appears efficacious in the immediate term but less so at follow-up.
“Cognitive behavioral therapy (CBT) is the most widely investigated psychological treatment for pediatric CP and appears to be efficacious in the immediate term but less so at follow-up [5].”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [5] Fisher, 2018, Psychological therapies for the management of chronic and recurrent pain in children and adolescents, Cochrane Database Syst Rev source
Classified as probably not a substantial claim.
PremisereasoningQualitative research allows access to the internal world of young people with chronic pain to begin to tease out questions about cognitive and emotional experience in a bottom-up way.
“While quantitative studies are very useful in allowing us to better understand, compare, and predict the role of such cognitive factors in symptomology, qualitative research allows us to access the internal world of young people with CP to begin to tease out these questions in a bottom-up way.”
Quote in the paperSubstantial claim- Rests on an assumption: Knowledge of the lived cognitive and emotional experience of adolescent chronic pain is limited.
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductown dataOf 21 families with whom initial contact was made, 12 participated.
“Of 21 families with whom initial contact was made, 12 participated.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductown dataThe utility and appropriateness of questions was checked with the first participant following the interview; no changes were suggested, so the guide and the data pertaining to this participant were retained.
“The utility and appropriateness of questions was further checked with the first participant following the interview.No changes were suggested; therefore, the guide was retained, as were the data pertaining to this participant.”
Quote in the paperNot a substantial claimClassified as probably not a substantial claim.
PremisecitationThe role of worry in chronic pain has been understood as a misdirected problem-solving strategy, whereby the problem of pain is poorly framed around a persistent search for a solution to remove the pain, which in the context of chronic pain is likely to be fruitless and contribute to a perseverative loop.
“Indeed, the role of worry in CP has been understood as a misdirected problem-solving strategy, whereby the problem of pain is poorly framed around a persistent search for a solution to remove the pain, which in the context of CP is likely to be fruitless and contribute to a perseverative loop [18].”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [18] Eccleston, 2007, Worry and chronic pain: A misdirected problem solving model, Pain source
May combine two claims.
Interpretationown dataParticipants' accounts of treatment attempts were often associated with a cycle of hope followed by disappointment and served to highlight the limits of traditional treatments in matching the force of their pain.
“Such accounts were often associated with a cycle of hope followed by disappointment and served to highlight the limits of traditional treatments in matching the force of their pain:”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductnone givenThe interview was piloted informally with colleagues to ensure that the wording of questions was understandable.
“The interview was piloted informally with colleagues to ensure that the wording of questions was understandable.”
Quote in the paperNot a substantial claimMay combine two claims.
Interpretationown dataThe negative effects of pain impact young people's ability to engage in activities, but they often decide to resist this impact by doing those things despite the pain.
“In this dual narrative lies our conundrum: The negative effects on pain impact the ability of young people to engage in activities, but often they make the decision to resist this impact by doing those things despite the pain.”
Quote in the paperSubstantial claim- Rests on an assumption: Chronic pain impacts functional ability.
May combine two claims.
PremisecitationPain catastrophizing has been shown to be a strong predictor of emotional distress and pain-related anxiety has been shown to be associated with greater levels of disability in adolescents with chronic pain.
“Given that catastrophizing has been shown to be a strong predictor of emotional distress and pain-related anxiety has been shown to be associated with greater levels of disability in adolescents with chronic pain [19,20], enhancing our knowledge in this area is imperative to treatment planning.”
Quote in the paperSubstantial claim0 of 2 sources checkedProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based). May combine two claims.
Interpretationnone givenParticipants' use of common terms such as stress and anxiety may have reflected socially constructed fear-based processes and the use of language for sense-making around internal states.
“Participants' use of common terms such as “stress” and “anxiety” may have reflected socially constructed fearbased processes and the use of language for sense-making around internal states.”
Quote in the paperNot a substantial claimMay combine two claims.
Interpretationown dataFor this sample of young people with chronic pain, worry was understood as an influential entity that shows up in the mind but also manifests within the body and influences behavior, sometimes helpfully and sometimes not.
“Ultimately, this theme suggests that for this sample of young people with CP, worry was understood as an influential entity that shows up in the mind but also manifests within the body and influences behavior, sometimes in a way that is helpful, but other times not.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationPediatric chronic pain may have a considerable functional impact in areas such as schooling, sleep, social, physical and emotional functioning, and overall quality of life.
“For affected young people, pediatric chronic pain (CP) may have a considerable functional impact in areas such as schooling, sleep, social, physical and emotional functioning, and overall quality of life [1][2][3][4].”
Quote in the paperNot a substantial claim0 of 3 sources checked- cites [1] Eccleston, 2007, Adolescent chronic pain and disability: A review of the current evidence in assessment and treatment, Paediatr Child Health source
- cites [2] Gold, 2009, Pediatric chronic pain and health-related quality of life, J Pediatr Nurs source
- cites [3] Kanstrup, 2014, Insomnia in paediatric chronic pain and its impact on depression and functional disability, Eur J Pain source
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductcitationThe study maintained conscious openness to alternative or novel explanations that were in conflict with cognitive behavioral theories and the fear avoidance model.
“However, in line with a critical realist view and the maintenance of ethical rigor in interpretation, we maintained conscious openness to alternative or novel explanations that were in conflict with these ideas [25,26].”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites [25] Fletcher, 2017, Applying critical realism in qualitative research: Methodology meets method, Int J Soc Res Methodol source
- cites [26] Willig, 2012
Not checked in the free run.
Classified as probably not a substantial claim.
Interpretationown dataThe identified fluidity of the worry experience and its recognized but partially ambiguous influence on mind, body, and behavior indicated the potential role for increased education around mind-body connections.
“The identified fluidity of the worry experience and its recognized but partially ambiguous influence on mind, body, and behavior indicated the potential role for increased education around mindbody connections, particularly given the established links between anxiety and CP.”
Quote in the paperSubstantial claimMay combine two claims.
Interpretationown dataThe negotiation can be seen as an attempt to resist pain and also as an attempt to exert agency by trying to overcome the uncertainty of the pain experience by making one's own decisions, whether to proceed in spite of pain or to choose to avoid certain activities.
“While the negotiation can be seen as an attempt to resist pain, it also seems to be an attempt to exert agency by trying overcome the uncertainty of the pain experience by making one's own decisions, whether that is to proceed in spite of pain or to choose to avoid certain activities:”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S2 (checkable). May combine two claims.
InterpretationreasoningThe current findings add further support to the need for specific interventions targeting uncertainty, with acceptance-based strategies likely to be a feasible approach.
“The current findings add further support to the need for specific interventions targeting uncertainty, with acceptance-based strategies likely to be a feasible approach.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable). May combine two claims.
InterpretationreasoningAt a clinical level, these findings indicate that acknowledgement of the role of uncertainty in the pain experience by clinicians may be validating for these young people in the first instance, while psychological treatments should incorporate strategies such as acceptance that support young people to manage and cope with both everyday and longer-term uncertainty.
“At a clinical level, these findings indicate that acknowledgement of the role of uncertainty in the pain experience by clinicians may be validating for these young people in the first instance, while psychological treatments should incorporate strategies such as acceptance that support young people to manage and cope with both everyday and longer-term uncertainty.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable).
InterpretationreasoningEducation around mind-body connections may also be beneficial.
“Education around mind-body connections may also be beneficial.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
InterpretationreasoningThe decision-making process is likely to be further impacted by parents, teachers, health care professionals, and friends, and thus the current theme provides only a partial understanding of the complexity of this experience for young people with CP.
“Such a decision-making process is likely to be further impacted by parents, teachers, health care professionals, and friends, and thus the current theme provides only a partial understanding of the complexity of this experience for young people with CP.”
Quote in the paperNot a substantial claimClassified as probably not a substantial claim. May combine two claims.
Interpretationown dataThese scores indicate the clinical relevance of worry for this sample and highlight the importance of using a more in-depth approach to make sense of the role of these cognitions within everyday life.
“These scores indicate the clinical relevance of worry for this sample and further highlight the importance of using a more in-depth approach to make sense of the role of these cognitions within everyday life.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductnone givenThe qualitative administration of psychometric questionnaires added to the depth of information garnered via interviews and helped to triangulate the data.
“Additionally, the qualitative administration of psychometric questionnaires here added to the depth of the information garnered via interviews and helped to triangulate the data.”
Quote in the paperNot a substantial claimClassified as probably not a substantial claim. May combine two claims.
Interpretationnone givenParticipants seemed to experience anger and frustration, and it is possible that these emotions helped them to summon the motivation to resist succumbing to functional disability and instead exert control over the pain and the uncertainty.
“Simultaneously, however, participants seemed to experience anger and frustration, and it is possible that these emotions helped them to summon the motivation to resist succumbing to functional disability and instead exert control over the pain and the uncertainty.”
Quote in the paperSubstantial claimClassified as probably not a substantial claim. May combine two claims.
PremisecitationIllness uncertainty is a well-documented feature of chronic health conditions that seems to be negatively related to adjustment, and a recent review paper highlighted diagnostic uncertainty as a critical factor in understanding and treatment approaches to pediatric CP.
“Illness uncertainty is a well-documented feature of chronic health conditions that seems to be negatively related to adjustment [43], and a recent review paper highlighted diagnostic uncertainty as a critical factor in our understanding of and treatment approaches to pediatric CP [44].”
Quote in the paperSubstantial claim0 of 2 sources checkedMay combine two claims.
Interpretationown dataThese fears were valid in the context of participants' past experiences but potentially served to further reinforce the complex negotiation between resist and avoid.
“These were valid fears in the context of participants' past experiences, but potentially served to further reinforce the complex negotiation between resist and avoid:”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductown dataThe current study lacked definitive information about participants' history of psychological contact, and therefore it was not clear whether cognitions and coping skills were influenced by previous knowledge.
“Finally, the current study lacked definitive information about participants' history of psychological contact, and therefore it was not clear whether cognitions and coping skills were influenced by previous knowledge.”
Quote in the paperNot a substantial claim
The paper relies on this without support.
Knowledge of the content, role, or format of worry in pediatric chronic pain is limited.
“Currently our knowledge of the content, role, or format of worry in pediatric CP is limited.”
The paper relies on this without support.
Knowledge of the lived cognitive and emotional experience of adolescent chronic pain is limited.
“At the moment, we know little about the lived cognitive and emotional experience of adolescent chronic pain, which impacts the extent to which existing psychological interventions can be improved upon using appropriate and tailored approaches.”
The paper relies on this without support.
Existing psychological interventions for adolescent chronic pain can be improved upon using appropriate and tailored approaches.
“At the moment, we know little about the lived cognitive and emotional experience of adolescent chronic pain, which impacts the extent to which existing psychological interventions can be improved upon using appropriate and tailored approaches.”
The paper relies on this without support.
Chronic pain impacts functional ability.
“Yet this active resistance conflicts with what we know about CP, namely that it does impact functional ability.”
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
Each contradiction between two passages listed here was confirmed by an independent check.
The number of subthemes changes
MinorThe abstract reports one subtheme, but the Figure 1 caption says two subthemes were identified. The findings section also presents personal competence and health as categories within a single subtheme.
“Three themes and one subtheme were identified.”
“Two subthemes of personal competence and health-related worries were identified.”
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“In this regard, studies have shown that cognitive strategies such as worry and catastrophizations might have a maintenance role in chronic pain conditions [30,31], while others, like cognitive reappraisal and acceptance might moderate pain subjective experience and tolerance [32].”
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Xiao, Y., Xie, L., Xu, Q., Chen, L., Chen, H., Xu, G., & Zhang, P. (2021) · Journal of Neurophysiology · doi:10.1152/jn.00025.2021 · Cited by 8 · see citing works
The experience of chronic pain among adolescents: suffering and attempt to overcome pain?
Shaygan, M., & Jaberi, A. (2022) · BMC Pediatrics · doi:10.1186/s12887-022-03617-3 · Cited by 6 · see citing works
“That study mainly focused on fears and concerns and did not address other aspects of CP experience among adolescents [20].”
BackgroundResultPinquart, M., & Thorwarth, A. (2025) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsaf048 · Cited by 7 · see citing works
Exploring Adolescents' Understanding, Experiences and Beliefs About Pain: A Qualitative Study
Bogard, I., Ayre, J., Smith, J., Pate, J. W., Sortwell, A., Gorringe, J., Gordon, G., Kamper, S. J., & Yamato, T. P. (2024) · Health Expectations · doi:10.1111/hex.70132 · Cited by 7 · see citing works
A meta-synthesis of the language of pediatric pain
Sabetsarvestani, R., Geçkil, E., & Köse, S. (2024) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2024.08.020 · Cited by 6 · see citing works
Djurtoft, C., Bruun, M. K., Riel, H., Hoegh, M., Darlow, B. J. S., & Rathleff, M. S. (2022) · medRxiv · doi:10.1101/2022.12.15.22283510 · Cited by 4 · see citing works
“Adolescents and parents often report that they do not 65 understand explanations given by clinicians, why some tests are (or are not) conducted, or the diagnostic label 66 itself [23,43,46].”
BackgroundRiel, H., Bruun, M. K., Djurtoft, C., Jensen, M. B., Kaalund, S., van Leeuwen, G. J., Overgaard, C., Rahbek, O., & Rathleff, M. S. (2025) · Musculoskeletal Science and Practice · doi:10.1016/j.msksp.2025.103293 · Cited by 5 · see citing works
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Reducing the Weight of Spinal Pain in Children and Adolescents
Palsson, T. S., Andreucci, A., Straszek, C. L., Rathleff, M. S., & Hoegh, M. (2021) · Children · doi:10.3390/children8121139 · Cited by 2 · see citing works
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“Given the high prevalence of misconceptions around pain and pain catastrophizing (often from families rather than children) [27, 28] our findings highlight how physiotherapists use evidence-based education approaches to address these mis-conceptions and maintain a focus on function rather than pain…”
Exploring the emotional impact of pain on children and adolescents: A poetic meta-ethnography
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Critical Realism in Symptom Science – A Scoping Review
Mathew, A. E., Akpotu, I. C., Lockwood, M. B., Tirkey, A. J., Patil, C. L., & Doorenbos, A. Z. (2024) · Advances in Nursing Science · doi:10.1097/ans.0000000000000534
“16-23 The other articles mostly reported findings on symptom experiences arising from qualitative inter-views (n = 19), 7,9,10,12,14,15,26-32,34 ,35 ,”
- Authors
- Heffernan, M., Wilson, C., Keating, K., & McCarthy, K.
- Affiliations
- Trinity College Dublin (IE)
- Temple Street Children's University Hospital (IE)
- Corresponding author
- Heffernan, Marese
- Venue
- Pain Medicine
- Publisher
- Oxford University Press (OUP)
- Published
- 2020-10-01
- Volume
- 22
- Issue
- 2
- Pages
- 459-469
- ISSN
- 1526-2375 (ISSN-L)
- 1526-4637
- OpenAlex
- W3089603358
- Cited by
- 21
- References
- 49
- Citations by year
- 2025: 6 · 2024: 4 · 2023: 5 · 2022: 3 · 2021: 3
- FWCI
- 2.63
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model (vor)
- Locations
- Pain Medicine (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Trinity College Dublin Clinical Psychology
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Pediatric Pain Management Techniques
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Health Sciences › Medicine › Anesthesiology and Pain Medicine › Pain Management and Treatment
- Keywords
- chronic pain, adolescents, worry, pain catastrophizing, fear-avoidance model, pain beliefs, acceptance of uncertainty, mind-body problem, pediatric chronic pain
- MeSH terms
- Adolescent, Ambulatory Care Facilities, Anxiety, Child, Fear, Humans, Catastrophization, Chronic Pain
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