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Scandinavian Journal of Pain

Official Journal of the Scandinavian Association for the Study of Pain

Editor-in-Chief: Breivik, Harald

CiteScore 2018: 0.85

SCImago Journal Rank (SJR) 2018: 0.494
Source Normalized Impact per Paper (SNIP) 2018: 0.427

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Volume 15, Issue 1


Adolescents’ experience of complex persistent pain

Kari Sørensen
  • Corresponding author
  • Department of Pain Management and Research, Oslo University Hospital, Oslo, Norway
  • Lovisenberg Diaconal University College, Olso, Norway
  • Email
  • Other articles by this author:
  • De Gruyter OnlineGoogle Scholar
/ Bjørg Christiansen
  • Department of Nursing and Health Promotion, Faculty of Health Sciences, Oslo and Akershus University College of Applied Sciences, Postbox 4, St. Olavs pl., N-0130 Oslo, Norway
  • Email
  • Other articles by this author:
  • De Gruyter OnlineGoogle Scholar
Published Online: 2017-04-01 | DOI: https://doi.org/10.1016/j.sjpain.2017.02.002


Background and aims

Persistent (chronic) pain is a common phenomenon in adolescents. When young people are referred to a pain clinic, they usually have amplified pain signals, with pain syndromes of unconfirmed ethology, such as fibromyalgia and complex regional pain syndrome (CRPS). Pain is complex and seems to be related to a combination of illness, injury, psychological distress, and environmental factors. These young people are found to have higher levels of distress, anxiety, sleep disturbance, and lower mood than their peers and may be in danger of entering adulthood with mental and physical problems. In order to understand the complexity of persistent pain in adolescents, there seems to be a need for further qualitative research into their lived experiences. The aim of this study was to explore adolescents’ experiences of complex persistent pain and its impact on everyday life.


The study has an exploratory design with individual in-depth interviews with six youths aged 12–19, recruited from a pain clinic at a main referral hospital in Norway. A narrative approach allowed the informants to give voice to their experiences concerning complex persistent pain. A hermeneutic analysis was used, where the research question was the basis for a reflective interpretation.


Three main themes were identified: (1) a life with pain and unpleasant bodily expressions; (2) an altered emotional wellbeing; and (3) the struggle to keep up with everyday life.

The pain was experienced as extremely strong, emerging from a minor injury or without any obvious causation, and not always being recognised by healthcare providers. The pain intensity increased as the suffering got worse, and the sensation was hard to describe with words. Parts of their body could change in appearance, and some described having pain-attacks or fainting. The feeling of anxiety was strongly connected to the pain. Despair and uncertainty contributed to physical disability, major sleep problems, school absence, and withdrawal from leisure activities. Their parents were supportive, but sometimes more emotionally affected than themselves. The adolescents described how they strived for normality and to not become an outsider. Being met with necessary facilitation from school was important, as well as keeping up with friends. These adolescents had all been treated by an interdisciplinary pain team, and stated that they had an optimistic view of the future, despite still having some symptoms.


The study provides new insights into adolescents’ own experiences of complex persistent pain occurring unexpectedly, developing dramatically over time, and influencing all parts of their everyday lives. The adolescents entered vicious cycles, with despair and decreased physical and social functioning, with the risk of isolation and role-loss. However, these young people seem to have a strong motivation to strive for normalcy.


These findings may encourage healthcare providers to perceive adolescents’ persistent pain through the lenses of a biopsychosocial approach. We suggest that further research into adolescents with persistent pain should include longitudinal studies of quality of life and gender perspectives.

Keywords: Adolescents; Persistent pain; Emotions; Everyday life; Identity


  • [1]

    Perquin CW, Hazebroek-Kampschreur AA, Hunfeld JA, Bohnen AM, van Suijlekom-Smit LW, Passchier J, van der Wouden JC. Pain in children and adolescents: a common experience. Pain 2000;87:51–8.PubMedCrossrefGoogle Scholar

  • [2]

    Roth-Isigkeit A, Thyen U, Raspe HH, Stoven H, Schmucker P. Reports of pain among German children and adolescents: an epidemiological study. Acta Paediatr 2004;93:258–63.PubMedCrossrefGoogle Scholar

  • [3]

    Weissmann R, Uziel Y. Pediatric complex regional pain syndrome: a review. Pediatr Rheumatol Online J 2016;14:29.PubMedCrossrefGoogle Scholar

  • [4]

    Bruehl S. Complex regional pain syndrome. BMJ 2015;351:h2730.Web of SciencePubMedGoogle Scholar

  • [5]

    Sherry DD. Complex regional pain syndrome in children. UpTo Date [Internet]; 2013.Google Scholar

  • [6]

    Kachko L, Efrat R, Ben Ami S, Mukamel M, Katz J. Complex regional pain syndromes in children and adolescents. Pediatr Int 2008;50:523–7.CrossrefPubMedWeb of ScienceGoogle Scholar

  • [7]

    Low AK, Ward K, Wines AP. Pediatric complex regional pain syndrome. J Pediatr Orthop 2007;27:567–72.PubMedWeb of ScienceCrossrefGoogle Scholar

  • [8]

    Wilder RT. Management of pediatric patients with complex regional pain syndrome. Clin J Pain 2006;22:443–8.CrossrefPubMedGoogle Scholar

  • [9]

    Clinch J, Eccleston C. Chronic musculoskeletal pain in children: assessment and management. Rheumatology 2009;48:466–74.Web of SciencePubMedGoogle Scholar

  • [10]

    Engel GL. The need for a new medical model: a challenge for biomedicine. Psychodyn Psychiatry 2012;40:377–96.CrossrefGoogle Scholar

  • [11]

    Gatchel RJ, McGeary DD, McGeary CA, Lippe B. Interdisciplinary chronic pain management: past, present, and future. Am Psychol 2014;69:119–30.CrossrefPubMedWeb of ScienceGoogle Scholar

  • [12]

    Twycross AWA. Pain: a biopsychosocial phenomenon. In: Twycross A, Dowden S, Stinson J, editors. Managing pain in children: a clinical guide for nurses and healthcare professionals. 2nd ed. Wiley Blackwell; 2014. p. 36–45.Google Scholar

  • [13]

    Cohen LL, Vowles KE, Eccleston C. The impact of adolescent chronic pain on functioning: disentangling the complex role of anxiety. J Pain 2010;11:1039–46.CrossrefWeb of SciencePubMedGoogle Scholar

  • [14]

    Eccleston C, Bruce E, Carter B. Chronic pain in children and adolescents. Paediatr Nurs 2006;18:30–3.PubMedCrossrefGoogle Scholar

  • [15]

    Kanstrup M, Holmstrom L, Ringstrom R, Wicksell RK. Insomnia in paediatric chronic pain and its impact on depression and functional disability. Eur J Pain 2014;18:1094–102.CrossrefWeb of SciencePubMedGoogle Scholar

  • [16]

    Palermo TM. Impact of recurrent and chronic pain on child and family daily functioning: a critical review of the literature. J Dev Behav Pediatr 2000;21:58–69.PubMedCrossrefGoogle Scholar

  • [17]

    Johnston CM, Oprescu FI, Gray M. Building the evidence for CRPS research from a lived experience perspective. Scand J Pain 2015;9:30–7.CrossrefPubMedWeb of ScienceGoogle Scholar

  • [18]

    Tong A, Jones J, Craig JC, Singh-Grewal D. Children’s experiences of living with juvenile idiopathic arthritis: a thematic synthesis of qualitative studies. Arthritis Care Res 2012;64:1392–404.CrossrefWeb of ScienceGoogle Scholar

  • [19]

    Meldrum ML, Tsao JC, Zeltzer LK. I can’t be what I want to be: children’s narratives of chronic pain experiences and treatment outcomes. Pain Med 2009;10:1018–34.PubMedCrossrefWeb of ScienceGoogle Scholar

  • [20]

    Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet 2001;358:483–8.CrossrefPubMedGoogle Scholar

  • [21]

    Kvale S, Brinkmann S. Det kvalitative forskningsintervju. Oslo: Gyldendal akademisk; 2010.Google Scholar

  • [22]

    Malterud K. Kvalitative metoder i medisinsk forskning: en innføring. Oslo: Universitetsforl; 2011.Google Scholar

  • [23]

    Silverman D. Interpreting qualitaive data. 5th ed. Los Angeles, London, New Delhi, Singapore, Washington, DC: Sage Publications; 2014.Google Scholar

  • [24]

    Borucki AN, Greco CD. An update on complex regional pain syndromes in children and adolescents. Curr Opin Pediatr 2015;27:448–52.Web of SciencePubMedCrossrefGoogle Scholar

  • [25]

    Lyby PS, Aslaksen PM, Flaten MA. Is fear of pain related to placebo analgesia? J Psychosom Res 2010;68:369–77.PubMedWeb of ScienceCrossrefGoogle Scholar

  • [26]

    Hoftun GB, Romundstad PR, Rygg M. Factors associated with adolescent chronic non-specific pain, chronic multisite pain, and chronic pain with high disability: the Young-HUNT Study 2008. J Pain 2012;13:874–83.Web of ScienceCrossrefPubMedGoogle Scholar

  • [27]

    Cruz N, O’Reilly J, Slomine BS, Salorio CF. Emotional and neuropsychological profiles of children with complex regional pain syndrome type-I in an inpatient rehabilitation setting. Clin J Pain 2011;27:27–34.CrossrefWeb of ScienceGoogle Scholar

  • [28]

    Logan DE, Williams SE, Carullo VP, Claar RL, Bruehl S, Berde CB. Children and adolescents with complex regional pain syndrome: more psychologically distressed than other children in pain? Pain Res Manag 2013;18:87–93.Web of SciencePubMedCrossrefGoogle Scholar

  • [29]

    Vlaeyen JW, Linton SJ. Fear-avoidance and its consequences in chronic musculoskeletal pain: a state of the art. Pain 2000;85:317–32.PubMedCrossrefGoogle Scholar

  • [30]

    Wilson AC, Lewandowski AS, Palermo TM. Fear-avoidance beliefs and parental responses to pain in adolescents with chronic pain. Pain Res Manag 2011;16:178–82.Web of ScienceCrossrefPubMedGoogle Scholar

  • [31]

    Hechler T, Vervoort T, Hamann M, Tietze AL, Vocks S, Goubert L, Hermann C, Wager J, Blankenburg M, Schroeder S, Zernikow B. Parental catastrophizing about their child’s chronic pain: are mothers and fathers different? Eur J Pain 2011;15:515–9.Web of SciencePubMedGoogle Scholar

  • [32]

    Maciver D, Jones D, Nicol M. Parents’ experiences of caring for a child with chronic pain. Qual Health Res 2010;20:1272–82.PubMedCrossrefWeb of ScienceGoogle Scholar

  • [33]

    Palermo TM, Toliver-Sokol M, Fonareva I, Koh JL. Objective and subjective assessment of sleep in adolescents with chronic pain compared to healthy adolescents. Clin J Pain 2007;23:812–20.Web of ScienceCrossrefPubMedGoogle Scholar

  • [34]

    Sivertsen B, Harvey AG, Lundervold AJ, Hysing M. Sleep problems and depression in adolescence: results from a large population-based study of Norwegian adolescents aged 16–18 years. Eur Child Adolesc Psychiatry 2014;23:681–9.CrossrefWeb of SciencePubMedGoogle Scholar

  • [35]

    Helseth S, Misvaer N. Adolescents’ perceptions of quality of life: what it is and what matters. J Clin Nurs 2010;19:1454–61.PubMedCrossrefWeb of ScienceGoogle Scholar

  • [36]

    Bakken A. Ungdata 2016, Nasjonale resultater. NOVA Rapport; 2016.Google Scholar

  • [37]

    Goffman E. Stigma: om afvigerens sociale identitet. Frederiksberg: Samfundslitteratur; 2009/1963.Google Scholar

  • [38]

    Haavet OR, Saugstad OD, Straand J. Positive factors associated with promoting health in low-risk and high-risk populations of 15-and 16-year-old pupils in Oslo, Norway. Acta Paediatr 2005;94:345–51.PubMedCrossrefGoogle Scholar

  • [39]

    Skarderud F. [The communicating body – eating disorders and culture]. Tidsskr Nor Laegeforen 2004;124:2365–8.PubMedGoogle Scholar

  • [40]

    Haraldstad K, Sorum R, Eide H, Natvig GK, Helseth S. Pain in children and adolescents: prevalence, impact on daily life, and parents’ perception, a school survey. Scand J Caring Sci 2011;25:27–36.Web of SciencePubMedCrossrefGoogle Scholar

  • [41]

    Hunfeld JAM, Perquin CW, Duivenvoorden HJ, Hazebroek-Kampschreur AAJM, Passchier J, van Suijlekom-Smit LWA, van der Wouden JC. Chronic pain and its impact on quality of life in adolescents and their families. J Pediatr Psychol 2001;26:145–53.CrossrefPubMedGoogle Scholar

  • [42]

    Roth-Isigkeit A, Thyen U, Stoven H, Schwarzenberger J, Schmucker P. Pain among children and adolescents: restrictions in daily living and triggering factors. Pediatrics 2005;115:e152–62.PubMedCrossrefGoogle Scholar

  • [43]

    Harris S, Morley S, Barton SB. Role loss and emotional adjustment in chronic pain. Pain 2003;105:363–70.CrossrefPubMedGoogle Scholar

About the article

Oslo universitetssykehus HF, Avdeling for smertebehandling, Postboks 4956 Nydalen, 0424 Oslo, Norway.


Received: 2016-11-15

Revised: 2017-02-03

Accepted: 2017-02-09

Published Online: 2017-04-01

Published in Print: 2017-04-01

Ethical issues: The Regional Committee of Medical Ethics approved this study. Both the adolescents and their parents gave informed consent. Patient confidentiality is secured from interviews to publication. The youths’ stories were held in confidence from parents or healthcare professionals, and the informants are given fictive names. The participating adolescents’ were informed that they were free to withdraw from the study at any time. This would not influence their standing with the hospital.

Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Conflicts of interest: None.

Citation Information: Scandinavian Journal of Pain, Volume 15, Issue 1, Pages 106–112, ISSN (Online) 1877-8879, ISSN (Print) 1877-8860, DOI: https://doi.org/10.1016/j.sjpain.2017.02.002.

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