Coping with chronic pain: In‐depth interviews with children suffering from Juvenile Chronic Arthritis

Christina Sällfors; Lillemor R-M. Hallberg; Anders Fasth

doi:10.1080/15017410109510765

Research

Coping with chronic pain: In‐depth interviews with children suffering from Juvenile Chronic Arthritis

Authors:

Christina Sällfors ,

Doctural student at the Nordic School of Public Health in Gothenburg, Sweden, SE

About Christina

Christina Sallfors, is a regristrated pediatric physiotherapeut, MScPH and doctural student at the Nordic School of Public Health in Gothenburg, Sweden. Her MScPH-thesis (2001) was titled “Chronic Pain in Childhood: Suffering from Juvenile Chronic Arthritis”. Research interests concern disability and chronic pain in childhood.

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Lillemor R-M. Hallberg,

About Lillemor R-M.

Lillemor R-M Hallberg, is a professor in public health at the Nordic Scool of Public Health in Gothenburg, Sweden. Professor Hallberg, who is also an associate professor in psychology, took her doctural degree in psychology 1992 with a dessertation titled “Hearing impairment, coping and perceived handicap in middleaged individuals with aquired hearing loss: aninteractional perspective”. Professor Hallbergs two main research areas concern hearing impairment and chronic pain.

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Anders Fasth

Pediatric Immunology, Goteborg University, Gothenburg, Sweden, SE

About Anders

Anders Fasth, MD, PhD is a professor in Pediatric Immunology, Goteborg University, Gothenburg, Sweden. Professor Fasth is head of Pediatric Immunology and the Hemopoietic Stem Cell Transplantation Unit at the Queen Silvia Children's Hospital, Gothenburg, Sweden. Professor Fasth two main research areas concern 1. Pediatric rheumatic disorders: Epidemiology and impact on family and society. 2. Primary immunodeficiencies: etiology and pathogenesis.

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Abstract

This study examined from the perspective of children with Juvenile Chronic Arthritis, their experiences of coping with chronic pain in daily life. In‐depth interviews were conducted with 22 children (6–17 years). The grounded theory method was applied for analysing the taped and transcribed interviews. Seven descriptive categories were grounded in the data, labelled (1) “controlling strategies”, (2) “avoidance strategies”, (3) “cognitive strategies”, (4) “compliance with the treatment”, (5) “seeking social support”, and (6) “recovering”. A core category was identified and labelled “making me different”. The children seem to be caught in a dilemma. In one way the chosen coping strategy reduces chronic pain and in another way the strategy increases stress and feelings of being different from non‐disabled peers. Our results indicate the great importance of social support from the children's environment.

How to Cite: Sällfors, C., Hallberg, L.R.-M. and Fasth, A., 2009. Coping with chronic pain: In‐depth interviews with children suffering from Juvenile Chronic Arthritis. Scandinavian Journal of Disability Research, 3(1), pp.3–20. DOI: http://doi.org/10.1080/15017410109510765

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Published on 08 Jul 2009

Peer Reviewed

CC BY 4.0

References

Abu‐Saad , H.H. and Uiterwijk , M. (1995). . Pain in children with juvenile rheumatoid arthritis: a descriptive study. . Pediatr Res , 38: : 194.–.
Andersson Gäre , B. and Fasth , A. (1992). . Epidemiology of juvenile chronic arthritis in southwestern Sweden. A 5 – year prospective population study. . Pediatrics , 90: : 950.–.
Band , E.B. and Weisz , J.R. (1988). . How to feel better when it feels bad: Children's perspectives on coping with everyday stress. . Developmental Psychology , 24: : 247.–.
Baker , C. , Wuerst , J. and Stern , P. (1992). . Method slurring: the grounded theory/phenomenology example. . Journal of Advanced Nursing , 17: : 1355.–.
Befring , E. (1993). . Skole og atferdsproblem i omsorgspedagogiskt perspektiv. (School and behavioural problems from a perspective of health care education), : 108.–. [city: Oslo]: (In Norwegian).
Bowlby , J. (1994). . En trygg bas. (A Secure Foundation). , : 149.–. [city: Stockholm]: : Natur & Kultur. . (In Swedish).
Brown , J.E. , O'Keeffe , J. , Sanders , S. H. and Baker , B. (1986). . Developmental changes in childrens cognition to stressful and painful situations. . Journal of Pediatric Psychology , 11((3)): : 343.–.
Compas , B. E. , Malcarne , V. L. and Fondacaro , K. M. (1988). . Coping with stressful events in older children and young adolescents. . Journal of Consulting and Clinical Psychology , 56: : 405.–.
Compas , B.E. and Worsham , N. (). When Mom or Dad has cancer: Developmental differences in children's coping with family stress (abstract). . Conference of the Society for Research on Child Development. . [city: Seattle], [state: WA].
Fields , L. and Prinz , R.J. (1997). . Coping and adjustment during childhood and adolescence. . Clin Psychol Rev , 17: : 937.–.
Folkman , S. , Lazarus , R.S. , Dunkel‐Schetter , C. , DeLongis , A. and Gruen , R.J. (1986). . Dynamics of a stressful encounter: cognitive appraisal, coping and encounter outcomes. . J Pers Soc Psychol , 50: : 992.–.
Gil , K.M. , Thompson , R.J. , Keith , B.R. , Tota – Faucette , M. , Noll , S. and Kinney , T.R. (1993). . Sickle cell disease pain in children and adolescents: change in pain frequency and coping strategies over time. . J Pediatr Psychol , 18: : 621.–.
Gil , K.M. , Wilson , J.J. and Edens , J.L. (1997). . The stability of pain coping strategies in young children, adolescents, and adults with sickle cell disease over an 18 month period. . Clin J Pain , 13: : 110.–.
Glaser , B. (1978). . Theoretical Sensivity. , : 70.[city: Mill Valley], [state: CA]: : Sociology Press. .
Glaser , B.G. and Strauss , A.L. (1967). . The Discovery of Grounded Theory: Strategies for Qualitative Research. , [city: New York]: : Aldine Publishing Company. .
Goffman , E. (1963). . Stigma. Notes on the management of spoiled identity. , [city: Englewood Cliffs]: : Prentice‐Hall Inc. .
Hansson , B. (1990). . Hur kan en individs sociala nätverk och sociala städ påverka hälsa? (How can the social network and social support structure of an individual affect his or her health?). . Socialmedicinsk tidskrift , 67: : 32.–. (In Swedish).
Holroyd , K.A. and Lazarus , R.S. (1982). . “Stress, coping and somatic adaptation. ”. In Handbook of Stress: Theoretical and Clinical Aspects. , Edited by: Goldberger , C and Breznitz , S . : 21.–. [city: New York]: : Free Press. .
Lazarus , R.S. (1991). . Emotion and adaptation. , [city: New York]: : Oxford University press. .
Lazarus , R.S. and Folkman , S. (1984). . Stress, appraisal and coping. , [city: New York]: : Springer. .
Leiken , L. , Firestone , P. and McGrath , P.J. (1988). . Physical symptom reporting in type a and type B children. . Journal of Consulting and Clinical Psychology , 56: : 721.–.
Lindström , B. and Köhler , L. (1991). . Youth, Disability and Quality of Life. . Pediatrician , 18: : 121.–.
Lowell , D.J. and Walk , G.A. (1989). . Pain associated with juvenile rheumatoid arthritis. . Pediat Clin North Am , 36: : 1015.–.
McGrath , P.J. and Unruh , A. (1987). . Pain in Children and Adolescents, Pain Research and Clinical Management. , Volume 1, : 75.[city: New York]: : Elsevier. .
Melzack , R. and Wall , P. (1996). . Pain Mechanisms: A new theory. . Pain Forum , 5((1)): : 3.–.
Ryan ‐ Wenger , N.M. (1994). . Coping behaviour in children: methods of measurement for research and clinical practice. . J Pediat Nurs , 9: : 183.–.
Savedra , M. , Tesler , M. and Wegner , C. (1988). . How adolescents describe pain. . Journal of Adolescent Health Care, , : : 320.–.
Schanberg , L. , Lefebvre , J. , Keefe , F. , Kredich , D. and Gil , K. (1997). . Pain coping and the pain experience in children with juvenile chronic arthritis. . Pain , 73: : 181.–.
Spivack , G. and M.B. (1982). . “The cognition of social adjustment: Interpersonal cognitive problem‐solving thinking. ”. In Advances in clinical child psychology. , Edited by: Lahey , BB and Kazdin , AE . : 323.–. [city: New York]: : Plenum. .
Stern , P.N. (1980). . Grounded theory methodology: its uses and processes. . Image , 7: : 20.–.
Strauss , A. and Corbin , J. (1990). . Basics of Qualitative Research: Grounded Theory Procedures and Techniques. , [city: Newsbury Park]: : Sage. .
Strauss , A. (1987). . Qualitative Analysis for Social Scientists. , : 33.[city: New York]: : Cambridge University Press. .
Tesler , M. , Wegner , C. , Savedra , M. , Gibbons , P. and Ward , J. (1981). . Coping strategies of children in pain. . Issues in Comprehensive Pediatric Nursing , 5: : 351.–.
Törestad , B. (1990). . Emperical Studies of Anxiety and Anger. , Dept of Psychology, University of Stockholm. . Ph.D. Dissertation.
UN (1989). . . Conventions of the rights of the child. , [city: New York]: : UNICEF/United Nations Centre for Human Rights. .
Vandvik , I.H. and Eckblad , G. (1990). . Relationship between pain, disease severity and psychosocial function in patients with juvenile chronic arthritis (JCA). . Scand J Rheumatol , 19: : 295.–.
Varni , J.W. , Blount , R.L. , Waldron , S.A. and Smith , A.J. (1995). . “Management of pain and distress. ”. In Handbook of Pediatric Psychology. , Edited by: Roberts , MC . : 105.–. [city: New York], [state: NY]: : Guilford. .
Varni , J.W. (1992). . Evaluation and management of pain in children with juvenile rheumatoid arthritis. . J Rheumatol , 33: : 32.–.
Wood , P.H. (1978). . “Nomenclature and classification of arthritis in children. ”. In The Care of Rheumatic Children, Edited by: Munthe , E . [city: Basel], , Switzerland: EULAR Publishers, 47.
Woodgate , R. (1998). . Adolescents’ Perspectives of Chronic Illness: “It's Hard”. . Journal of Pediatric Nursing , 13: : 210.–.

[CIT0001] Abu‐Saad , H.H. and Uiterwijk , M. (1995). . Pain in children with juvenile rheumatoid arthritis: a descriptive study. . Pediatr Res , 38: : 194.–.

[CIT0002] Andersson Gäre , B. and Fasth , A. (1992). . Epidemiology of juvenile chronic arthritis in southwestern Sweden. A 5 – year prospective population study. . Pediatrics , 90: : 950.–.

[CIT0003] Band , E.B. and Weisz , J.R. (1988). . How to feel better when it feels bad: Children's perspectives on coping with everyday stress. . Developmental Psychology , 24: : 247.–.

[CIT0004] Baker , C. , Wuerst , J. and Stern , P. (1992). . Method slurring: the grounded theory/phenomenology example. . Journal of Advanced Nursing , 17: : 1355.–.

[CIT0005] Befring , E. (1993). . Skole og atferdsproblem i omsorgspedagogiskt perspektiv. (School and behavioural problems from a perspective of health care education), : 108.–. [city: Oslo]: (In Norwegian).

[CIT0006] Bowlby , J. (1994). . En trygg bas. (A Secure Foundation). , : 149.–. [city: Stockholm]: : Natur & Kultur. . (In Swedish).

[CIT0007] Brown , J.E. , O'Keeffe , J. , Sanders , S. H. and Baker , B. (1986). . Developmental changes in childrens cognition to stressful and painful situations. . Journal of Pediatric Psychology , 11((3)): : 343.–.

[CIT0008] Compas , B. E. , Malcarne , V. L. and Fondacaro , K. M. (1988). . Coping with stressful events in older children and young adolescents. . Journal of Consulting and Clinical Psychology , 56: : 405.–.

[CIT0009] Compas , B.E. and Worsham , N. (). When Mom or Dad has cancer: Developmental differences in children's coping with family stress (abstract). . Conference of the Society for Research on Child Development. . [city: Seattle], [state: WA].

[CIT0010] Fields , L. and Prinz , R.J. (1997). . Coping and adjustment during childhood and adolescence. . Clin Psychol Rev , 17: : 937.–.

[CIT0011] Folkman , S. , Lazarus , R.S. , Dunkel‐Schetter , C. , DeLongis , A. and Gruen , R.J. (1986). . Dynamics of a stressful encounter: cognitive appraisal, coping and encounter outcomes. . J Pers Soc Psychol , 50: : 992.–.

[CIT0012] Gil , K.M. , Thompson , R.J. , Keith , B.R. , Tota – Faucette , M. , Noll , S. and Kinney , T.R. (1993). . Sickle cell disease pain in children and adolescents: change in pain frequency and coping strategies over time. . J Pediatr Psychol , 18: : 621.–.

[CIT0013] Gil , K.M. , Wilson , J.J. and Edens , J.L. (1997). . The stability of pain coping strategies in young children, adolescents, and adults with sickle cell disease over an 18 month period. . Clin J Pain , 13: : 110.–.

[CIT0014] Glaser , B. (1978). . Theoretical Sensivity. , : 70.[city: Mill Valley], [state: CA]: : Sociology Press. .

[CIT0015] Glaser , B.G. and Strauss , A.L. (1967). . The Discovery of Grounded Theory: Strategies for Qualitative Research. , [city: New York]: : Aldine Publishing Company. .

[CIT0016] Goffman , E. (1963). . Stigma. Notes on the management of spoiled identity. , [city: Englewood Cliffs]: : Prentice‐Hall Inc. .

[CIT0017] Hansson , B. (1990). . Hur kan en individs sociala nätverk och sociala städ påverka hälsa? (How can the social network and social support structure of an individual affect his or her health?). . Socialmedicinsk tidskrift , 67: : 32.–. (In Swedish).

[CIT0018] Holroyd , K.A. and Lazarus , R.S. (1982). . “Stress, coping and somatic adaptation. ”. In Handbook of Stress: Theoretical and Clinical Aspects. , Edited by: Goldberger , C and Breznitz , S . : 21.–. [city: New York]: : Free Press. .

[CIT0019] Lazarus , R.S. (1991). . Emotion and adaptation. , [city: New York]: : Oxford University press. .

[CIT0020] Lazarus , R.S. and Folkman , S. (1984). . Stress, appraisal and coping. , [city: New York]: : Springer. .

[CIT0021] Leiken , L. , Firestone , P. and McGrath , P.J. (1988). . Physical symptom reporting in type a and type B children. . Journal of Consulting and Clinical Psychology , 56: : 721.–.

[CIT0022] Lindström , B. and Köhler , L. (1991). . Youth, Disability and Quality of Life. . Pediatrician , 18: : 121.–.

[CIT0023] Lowell , D.J. and Walk , G.A. (1989). . Pain associated with juvenile rheumatoid arthritis. . Pediat Clin North Am , 36: : 1015.–.

[CIT0024] McGrath , P.J. and Unruh , A. (1987). . Pain in Children and Adolescents, Pain Research and Clinical Management. , Volume 1, : 75.[city: New York]: : Elsevier. .

[CIT0025] Melzack , R. and Wall , P. (1996). . Pain Mechanisms: A new theory. . Pain Forum , 5((1)): : 3.–.

[CIT0026] Ryan ‐ Wenger , N.M. (1994). . Coping behaviour in children: methods of measurement for research and clinical practice. . J Pediat Nurs , 9: : 183.–.

[CIT0027] Savedra , M. , Tesler , M. and Wegner , C. (1988). . How adolescents describe pain. . Journal of Adolescent Health Care, , : : 320.–.

[CIT0028] Schanberg , L. , Lefebvre , J. , Keefe , F. , Kredich , D. and Gil , K. (1997). . Pain coping and the pain experience in children with juvenile chronic arthritis. . Pain , 73: : 181.–.

[CIT0029] Spivack , G. and M.B. (1982). . “The cognition of social adjustment: Interpersonal cognitive problem‐solving thinking. ”. In Advances in clinical child psychology. , Edited by: Lahey , BB and Kazdin , AE . : 323.–. [city: New York]: : Plenum. .

[CIT0030] Stern , P.N. (1980). . Grounded theory methodology: its uses and processes. . Image , 7: : 20.–.

[CIT0031] Strauss , A. and Corbin , J. (1990). . Basics of Qualitative Research: Grounded Theory Procedures and Techniques. , [city: Newsbury Park]: : Sage. .

[CIT0032] Strauss , A. (1987). . Qualitative Analysis for Social Scientists. , : 33.[city: New York]: : Cambridge University Press. .

[CIT0033] Tesler , M. , Wegner , C. , Savedra , M. , Gibbons , P. and Ward , J. (1981). . Coping strategies of children in pain. . Issues in Comprehensive Pediatric Nursing , 5: : 351.–.

[CIT0034] Törestad , B. (1990). . Emperical Studies of Anxiety and Anger. , Dept of Psychology, University of Stockholm. . Ph.D. Dissertation.

[CIT0035] UN (1989). . . Conventions of the rights of the child. , [city: New York]: : UNICEF/United Nations Centre for Human Rights. .

[CIT0036] Vandvik , I.H. and Eckblad , G. (1990). . Relationship between pain, disease severity and psychosocial function in patients with juvenile chronic arthritis (JCA). . Scand J Rheumatol , 19: : 295.–.

[CIT0037] Varni , J.W. , Blount , R.L. , Waldron , S.A. and Smith , A.J. (1995). . “Management of pain and distress. ”. In Handbook of Pediatric Psychology. , Edited by: Roberts , MC . : 105.–. [city: New York], [state: NY]: : Guilford. .

[CIT0038] Varni , J.W. (1992). . Evaluation and management of pain in children with juvenile rheumatoid arthritis. . J Rheumatol , 33: : 32.–.

[CIT0039] Wood , P.H. (1978). . “Nomenclature and classification of arthritis in children. ”. In The Care of Rheumatic Children, Edited by: Munthe , E . [city: Basel], , Switzerland: EULAR Publishers, 47.

[CIT0040] Woodgate , R. (1998). . Adolescents’ Perspectives of Chronic Illness: “It's Hard”. . Journal of Pediatric Nursing , 13: : 210.–.

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Coping with chronic pain: In‐depth interviews with children suffering from Juvenile Chronic Arthritis

Authors:

Christina Sällfors ,

Doctural student at the Nordic School of Public Health in Gothenburg, Sweden, SE

About Christina

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Lillemor R-M. Hallberg,

About Lillemor R-M.

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Anders Fasth

Pediatric Immunology, Goteborg University, Gothenburg, Sweden, SE

About Anders

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Abstract

References