PAINSTORIES – Exploring the Temporal Developments in the Challenges, Barriers, and Self-Management Needs of Adolescents with Longstanding Knee Pain: A Qualitative, Retrospective Interview Study with Young Adults Experiencing Knee Pain Since Adolescence

Published:October 27, 2021DOI:


      • Patient education enhances rehabilitation of adolescent knee pain.
      • This study explored socio-cognitive process driving adolescents’ self-management.
      • Our data revealed that self-management followed a four-phase trajectory.
      • Acceptance was key to progressing adolescent's management of knee pain.
      • We present a model for integrating self-management in education concepts.


      Patient education is essential to enable rehabilitation and self-management of longstanding knee pain in adolescents. Currently, a lack of insights into the socio-cognitive processes governing adolescents’ self-management remains an obstacle for enhancing treatment efficacy. This study developed a conceptual model for integrating adolescents’ challenges and barriers into future treatments. We conducted semi-structured retrospective interviews with 14 young adults (age 21–25 years) with knee pain since adolescence (9 years mean duration). Temporal developments in participants’ knee pain were captured through a memorization exercise. Data was analyzed via the General Inductive Approach. Themes were organized into a matrix, extracting a conceptual model, which was tested with eight new participants. The analysis identified seven themes. Further interpretation, via the matrix, organized these within a four-stage trajectory of; gaining awareness, knowledgeability, contextual application and reconceptualization, each with different challenges and dilemmas, participants had to overcome to progress their self-management. Testing the conceptual model, confirmed stages and highlighted acceptance as key to overcoming barriers. The study described adolescents’ integration of self-management as proximal and inquiry-based, with acceptance, driving increasingly complex management behaviors. We hypothesize future interventions may benefit from exploring supporting adolescents’ inquiries into their knee pain at different stages of the trajectory.


      This study presents a conceptual model and vocabulary for optimizing patient education concepts, to target the challenges, barriers and needs of adolescents with knee pain at different stages of their mastery journey. We believe our findings may inform reflections among clinicians and researchers, and development of more effective education interventions.

      Key words

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to The Journal of Pain
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Ajzen I
        The theory of planned behavior.
        Organizational Behavior and Human Decision Processes. 1991; 50: 179-211
        • Audulv Å
        The over time development of chronic illness self-management patterns: a longitudinal qualitative study.
        BMC Public Health. 2013; 13: 452
        • Auvinen J
        • Eskola PJ
        • Ohtonen H-R
        • Paananen M
        • Jokelainen J
        • Timonen M
        • Vahtera J
        • Leino-Arjas P
        • Karppinen J
        Long-term adolescent multi-site musculoskeletal pain is associated with psychological distress and anxiety.
        Journal of Psychosomatic Research. 2017; 93: 28-32
        • Bandura A
        Self-efficacy: Toward a unifying theory of behavioral change.
        Psychological Review. 1977; 84: 191-215
        • Bergen N
        • Labonté R
        Everything is perfect, and we have no problems: Detecting and limiting social desirability bias in qualitative research.
        Qual Health Res. 2020; 30: 783-792
        • Blacker KJ
        • Herbert JD
        • Forman EM
        • Kounios J
        Acceptance-versus change-based pain management: the role of psychological acceptance.
        Behav Modif SAGE Publications Inc. 2012; 36: 37-48
        • Brown SL
        • Teufel JA
        • Birch DA
        Early Adolescents Perceptions of Health and Health Literacy*.
        The Journal of School Health; Kent. 2007; 77: 7-15
        • Bruner MW
        • Balish SM
        • Forrest C
        • Brown S
        • Webber K
        • Gray E
        • McGuckin M
        • Keats MR
        • Rehman L
        • Shields CA
        Ties that bond: youth sport as a vehicle for social identity and positive youth development.
        Res Q Exerc Sport. 2017; 88: 209-214
        • Chaiklin S
        The zone of proximal development in vygotsky's analysis of learning and instruction.
        in: Kozulin A Gindis B Ageyev VS Miller SM Vygotsky's Educational Theory in Cultural Context. Cambridge University Press, 2003: 39-64 (1)
        • Collins NJ
        • Barton CJ
        • van Middelkoop M
        • Callaghan MJ
        • Rathleff MS
        • Vicenzino BT
        • Davis IS
        • Powers CM
        • Macri EM
        • Hart HF
        • de Oliveira Silva D
        • Crossley KM
        2018 Consensus statement on exercise therapy and physical interventions (orthoses, taping and manual therapy) to treat patellofemoral pain: recommendations from the 5th International Patellofemoral Pain Research Retreat, Gold Coast, Australia, 2017.
        British Journal of Sports Medicine. 2018; 52: 1170-1178
        • Corbin J
        • Strauss A
        Managing chronic illness at home: Three lines of work.
        Qualitative Sociology. 1985; 8: 224-247
        • de Oliveira Silva D
        • Pazzinatto MF
        • Rathleff MS
        • Holden S
        • Bell E
        • Azevedo F
        • Barton C
        Patient education for patellofemoral pain: A systematic review.
        J Orthop Sports Phys Ther Journal of Orthopaedic & Sports Physical Therapy. 2020; 1: 1-36
        • Depraz N
        The phenomenological reduction as praxis.
        Journal of Consciousness Studies US: Imprint Academic. 1999; 6: 95-110
        • Dunkel CS
        • Harbke C
        A review of measures of erikson's stages of psychosocial development: Evidence for a general factor.
        J Adult Dev. 2017; 24: 58-76
        • Eccleston C
        • Wastell S
        • Crombez G
        • Jordan A
        Adolescent social development and chronic pain.
        European Journal of Pain. 2008; 12: 765-774
        • Forgeron PA
        • King S
        • Stinson JN
        • McGrath PJ
        • MacDonald AJ
        • Chambers CT
        Social functioning and peer relationships in children and adolescents with chronic pain: A systematic review.
        Pain Research and Management. 2010; 15: 27-41
        • Gannik D
        Situational disease: elements of a social theory of disease based on a study of back trouble.
        Scandinavian Journal of Primary Health Care. 2002; 20: 25-30
        • Gauci J
        • Bloomfield J
        • Lawn S
        • Towns S
        • Steinbeck K
        Effectiveness of self-management programmes for adolescents with a chronic illness: A systematic review.
        Journal of Advanced Nursing. 2021; 77: 3585-3599
        • Gendreau M
        • Hufford MR
        • Stone AA
        Measuring clinical pain in chronic widespread pain: selected methodological issues.
        Best Practice & Research Clinical Rheumatology. 2003; 17: 575-592
        • Hallal PC
        • Victora CG
        • Azevedo MR
        • Wells JCK
        Adolescent physical activity and health.
        Sports Med. 2006; 36: 1019-1030
        • Christensen KS
        • Kristensen JK
        Psykiske forstyrrelser og adfærdsproblemer.
        Almen medicin, Munksgaard. 2014; 1 (In: Hunskår S, editor): 458-511
        • Jaspers MWM
        • Steen T
        • Bos C van den
        • Geenen M
        The think aloud method: a guide to user interface design.
        International Journal of Medical Informatics. 2004; 73: 781-795
        • Jordan A
        • Noel M
        • Caes L
        • Connell H
        • Gauntlett-Gilbert J
        A developmental arrest? Interruption and identity in adolescent chronic pain.
        PAIN Reports. 2018; 3: e678
        • Khanom S
        • McDonagh JE
        • Briggs M
        • McBeth J
        Characterizing pain flares in adolescent inflammatory and non-inflammatory musculoskeletal disorders: A qualitative study using an interpretative phenomenological approach.
        European Journal of Pain. 2020; 24: 1785-1796
        • Kralik D
        • Koch T
        • Price K
        • Howard N
        Chronic illness self-management: taking action to create order.
        Journal of Clinical Nursing. 2004; 13: 259-267
        • Kvale S
        • Brinkmann S
        • Part II
        Seven stages of an interview investigation.
        in: Kvale S Brinkmann S InterViews: Learning the Craft of Qualitative Research Interviewing. 2nd ed. SAGE, 2009: 97-312
        • Law GU
        • Tolgyesi CS
        • Howard RA
        Illness beliefs and self-management in children and young people with chronic illness: a systematic review.
        Health Psychology Review. 2014; 8: 362-380
        • Leeuw M
        • Goossens MEJB
        • Linton SJ
        • Crombez G
        • Boersma K
        • Vlaeyen JWS
        The fear-avoidance model of musculoskeletal pain: current state of scientific evidence.
        J Behav Med. 2007; 30: 77-94
        • Leino-Arjas P
        • Rajaleid K
        • Mekuria G
        • Nummi T
        • Virtanen P
        • Hammarström A
        Trajectories of musculoskeletal pain from adolescence to middle age: the role of early depressive symptoms, a 27-year follow-up of the Northern Swedish Cohort.
        Pain. 2018; 159: 67-74
        • Leonard BJ
        • Garwick A
        • Adwan JZ
        Adolescents’ perceptions of parental roles and involvement in diabetes management.
        Journal of Pediatric Nursing. 2005; 20: 405-414
        • Lerch MF
        • Thrane SE
        Adolescents with chronic illness and the transition to self-management: A systematic review.
        Journal of Adolescence. 2019; 72: 152-161
        • Li LC
        • Townsend AF
        • Badley EM
        Self-management interventions in the digital age: New approaches to support people with rheumatologic conditions.
        Best Practice & Research Clinical Rheumatology. 2012; 26: 321-333
        • Lorig KR
        • Holman HR
        Self-management education: History, definition, outcomes, and mechanisms.
        ann behav med. 2003; 26: 1-7
        • Malterud K
        Qualitative research: standards, challenges, and guidelines.
        The Lancet. 2001; 358: 483-488
        • McCarthy S
        • O'Raghallaigh P
        • Woodworth S
        • Lim YL
        • Kenny LC
        • Adam F
        An integrated patient journey mapping tool for embedding quality in healthcare service reform.
        Journal of Decision Systems. 2016; 25: 354-368
        • McCracken LM
        Learning to live with the pain: acceptance of pain predicts adjustment in persons with chronic pain.
        Pain. 1998; 74: 21-27
        • Miettinen R
        The concept of experiential learning and John Dewey's theory of reflective thought and action.
        International Journal of Lifelong Education. 2000; 19: 54-72
        • Moen A
        • Brennan PF
        [email protected]: The work of health information management in the household (himh): implications for consumer health informatics (CHI) innovations.
        Journal of the American Medical Informatics Association. 2005; 12: 648-656
        • Nielsen J
        • Clemmensen T
        • Yssing C
        Getting access to what goes on in people's heads? reflections on the think-aloud technique.
        Proceedings of the second Nordic conference on Human-computer interaction. 2002; 1: 101-110
        • Olsson CA
        • Bond L
        • Johnson MW
        • Forer DL
        • Boyce MF
        • Sawyer SM
        Adolescent chronic illness: a qualitative study of psychosocial adjustment.
        Annals of the Academy of Medicine Singapore Academy of Medicine Singapore;. 2003; 32: 43-50
        • Osborn M
        • Rodham K
        Insights into pain: A review of qualitative research.
        Rev Pain. 2010; 4: 2-7
        • Paananen MV
        • Taimela SP
        • Tammelin TH
        • Kantomaa MT
        • Ebeling HE
        • Taanila AM
        • Zitting PJ
        • Karppinen JI
        Factors related to seeking health care among adolescents with musculoskeletal pain.
        PAIN®. 2011; 152: 896-903
        • Paterson BL
        The shifting perspectives model of chronic illness.
        Journal of Nursing Scholarship. 2001; 33: 21-26
        • Rankin H
        • Holttum SE
        The relationship between acceptance and cognitive representations of pain in participants of a pain management programme.
        Psychology, Health & Medicine. 2003; 8: 329-334
        • Rathleff CR
        • Olesen JL
        • Roos EM
        • Rasmussen S
        • Rathleff MS
        Half of 12-15-year-olds with knee pain still have pain after one year.
        Dan Med J. 2013; 60: A4725
        • Rathleff MS
        • Graven-Nielsen T
        • Hölmich P
        • Winiarski L
        • Krommes K
        • Holden S
        • Thorborg K
        Activity Modification and Load Management of Adolescents With Patellofemoral Pain: A Prospective Intervention Study Including 151 Adolescents.
        Am J Sports Med SAGE Publications Inc STM. 2019; 47: 1629-1637
        • Rathleff MS
        • Holden S
        • Straszek CL
        • Olesen JL
        • Jensen MB
        • Roos EM
        Five-year prognosis and impact of adolescent knee pain: a prospective population-based cohort study of 504 adolescents in Denmark.
        BMJ Open. 2019; 9e024113
        • Rathleff MS
        • Rathleff CR
        • Olesen JL
        • Rasmussen S
        • Roos EM
        Is knee pain during adolescence a self-limiting condition?: prognosis of patellofemoral pain and other types of knee pain.
        The American Journal of Sports Medicine. 2016; 44: 1165-1171
        • Rathleff MS
        • Roos EM
        • Olesen JL
        • Rasmussen S
        Exercise during school hours when added to patient education improves outcome for 2 years in adolescent patellofemoral pain: a cluster randomised trial.
        Br J Sports Med. 2015; 49: 406-412
        • Rathleff MS
        • Roos EM
        • Olesen JL
        • Rasmussen S
        High prevalence of daily and multi-site pain – a cross-sectional population-based study among 3000 Danish adolescents.
        BMC Pediatrics. 2013; 13: 191
        • Rathleff MS
        • Skuldbøl SK
        • Rasch MNB
        • Roos EM
        • Rasmussen S
        • Olesen JL
        Care-seeking behaviour of adolescents with knee pain: a population-based study among 504 adolescents.
        BMC Musculoskeletal Disorders. 2013; 14: 225
        • Rathleff MS
        • Thomsen JL
        • Barton CJ
        Patient education in patellofemoral pain: potentially potent and essential, but under-researched.
        Br J Sports Med BMJ Publishing Group Ltd and British Association of Sport and Exercise Medicine. 2018; 52: 623-624
        • Sattoe JNT
        • Bal MI
        • Roelofs PDDM
        • Bal R
        • Miedema HS
        • van Staa A
        Self-management interventions for young people with chronic conditions: A systematic overview.
        Patient Education and Counseling. 2015; 98: 704-715
        • Sawyer SM
        • Afifi RA
        • Bearinger LH
        • Blakemore S-J
        • Dick B
        • Ezeh AC
        • Patton GC
        Adolescence: a foundation for future health.
        The Lancet. 2012; 379: 1630-1640
        • Sawyer SM
        • Aroni RA
        Self-management in adolescents with chronic illness. What does it mean and how can it be achieved?.
        Med J Aust. 2005; 183: 405-409
        • Smith BE
        • Selfe J
        • Thacker D
        • Hendrick P
        • Bateman M
        • Moffatt F
        • Rathleff MS
        • Smith TO
        • Logan P
        Incidence and prevalence of patellofemoral pain: A systematic review and meta-analysis.
        PLOS ONE Public Library of Science. 2018; 13e0190892
        • Tammelin T
        • Näyhä S
        • Hills AP
        • Järvelin M-R
        Adolescent participation in sports and adult physical activity.
        American Journal of Preventive Medicine. 2003; 24: 22-28
        • Telama R
        • Yang X
        • Laakso L
        • Viikari J
        Physical activity in childhood and adolescence as predictor of physical activity in young adulthood.
        Am J Prev Med. 1997; 13: 317-323
        • Thomas DR
        A General Inductive Approach for Analyzing Qualitative Evaluation Data.
        American Journal of Evaluation. 2006; 27: 237-246
        • Townsend A
        • Wyke S
        • Hunt K
        Self-managing and managing self: practical and moral dilemmas in accounts of living with chronic illness.
        Chronic Illness. 2006; 2: 185-194
        • Van de Velde D
        • De Zutter F
        • Satink T
        • Costa U
        • Janquart S
        • Senn D
        • De Vriendt P
        Delineating the concept of self-management in chronic conditions: a concept analysis.
        BMJ Open. 2019; 9e027775
        • Weiss KE
        • Hahn A
        • Wallace DP
        • Biggs B
        • Bruce BK
        • Harrison TE
        Acceptance of Pain: Associations With Depression, Catastrophizing, and Functional Disability Among Children and Adolescents in an Interdisciplinary Chronic Pain Rehabilitation Program.
        Journal of Pediatric Psychology. 2013; 38: 756-765
        • Wong DL
        • Baker CM
        Pain in children: comparison of assessment scales.
        Pediatr Nurs. 1988; 14: 9-17
        • Yardley L
        Dilemmas in qualitative health research.
        Psychology & Health. 2000; 15: 215-228
        • Zahavi D
        in: Collin F Køppe S Humanistisk Videnskabsteori. DR Multimedia, 2003: 121-138 (2)