Journal of Clinical Psychology in Medical Settings

, Volume 20, Issue 3, pp 351–360 | Cite as

Caregiver Demand and Parent Distress in Juvenile Rheumatic Disease: The Mediating Effect of Parent Attitude Toward Illness

  • Jamie L. Ryan
  • Larry L. Mullins
  • Rachelle R. Ramsey
  • Margaret S. Bonner
  • James N. Jarvis
  • Stephen R. Gillaspy
  • John M. Chaney


Parents of youth with juvenile rheumatic diseases (JRD) often take on illness management responsibilities that can become burdensome, potentially resulting in poor parent adjustment outcomes. However, not all caregivers will experience increased distress as a result of variability in stress appraisals. The current study examined the role of parent illness attitudes in the relation between perceived caregiver demand and parental distress. Youth (N = 70) ages 7–18 years diagnosed with a JRD and their parents were recruited from a pediatric rheumatology clinic. Parents completed measures of caregiver demand, parental distress, and illness attitudes. Hierarchical regression revealed a relationship between caregiver demand and parental distress. A significant relationship was also found between caregiver demand and parent illness attitudes, as well as parent illness attitudes and parental distress. Thus, parent illness attitudes mediated the relationship between caregiver demand and parental distress. Techniques aimed at altering negative illness attitudes may help parents cope with their caregiving responsibilities.


Attitude toward illness Caregiver demand Parent distress Juvenile rheumatic disease 


  1. Aguinis, H. (2004). Regression analysis for categorical moderators. New York: The Guilford Press.Google Scholar
  2. Andrews, N. R., Chaney, J. M., Mullins, L. L., Wagner, J. L., Hommel, K. A., & Jarvis, J. N. (2009). The differential effect of child age on the illness intrusiveness–parent distress relationship in juvenile rheumatic disease. Rehabilitation Psychology, 54, 45–50.PubMedCrossRefGoogle Scholar
  3. Anthony, K. K., Bromberg, M. H., Gil, K. M., & Schanberg, L. E. (2011). Parental perceptions of child vulnerability and parent stress as predictors of pain and adjustment in children with chronic arthritis. Children’s Health Care, 40, 53–69.CrossRefGoogle Scholar
  4. Askins, M. A., Sahler, O. J., Sherman, S. A., Fairclough, D. L., Butler, R. W., Katz, E. R., et al. (2009). Report from a multi-institutional randomized clinical trial examining computer-assisted problem-solving skills training for English- and Spanish speaking mothers of children with newly diagnosed cancer. Journal of Pediatric Psychology, 34, 551–563.PubMedCrossRefGoogle Scholar
  5. Austin, J., & Huberty, T. (1993). Development of the child toward illness scale. Journal of Pediatric Psychology, 18, 467–480.PubMedCrossRefGoogle Scholar
  6. Barlow, J. H., & Ellard, D. R. (2006). The psychosocial well-being of children with chronic disease, their parents, and siblings: An overview of the research evidence base. Child: Care, Health, & Development, 32, 19–31.CrossRefGoogle Scholar
  7. Baron, R., & Kenny, D. (1986). The moderator–mediator variable distinction in social psychological research: Conceptual, strategic, and statistical considerations. Journal of Personality and Social Psychology, 51, 1173–1182.PubMedCrossRefGoogle Scholar
  8. Bonner, M. J., Hardy, K. K., Willard, V. W., & Hutchinson, K. C. (2007). Brief report: Psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. Journal of Pediatric Psychology, 32, 851–856.PubMedCrossRefGoogle Scholar
  9. Braddick, M. T., Chan, D., Conway, J. M., Lance, C. E., & Spector, P. E. (2010). What is method variance and how can we cope with it? A panel discussion. Organizational Research Methods, 13, 407–420.CrossRefGoogle Scholar
  10. Brouwer, W. B. F., van Exel, N. J. A., van de Berg, B., Dinant, H. J., Koopmanschap, M. A., & van den Bos, G. A. M. (2004). Burden of caregiving: Evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis. Arthritis and Rheumatism, 51, 570–577.PubMedCrossRefGoogle Scholar
  11. Bruns, A., Hilario, M. O. E., Jennings, F., Silva, C. A., & Natour, J. (2008). Quality of life and impact of disease on primary caregivers of juvenile idiopathic arthritis patients. Joint, Bone, & Spine, 75, 149–154.CrossRefGoogle Scholar
  12. Cassidy, J. T., Petty, R. E., Laxer, R. M., & Lindsley, C. B. (2010). Textbook of pediatric rheumatology (6th ed.). Philadelphia: W. B. Saunders.Google Scholar
  13. Colletti, C. J., Wolfe-Christensen, C., Carpentier, M. Y., Page, M. C., McNall-Knapp, R. Y., Meyer, W. H., et al. (2008). The relationship of parental overprotection, perceived vulnerability, and parenting distress to behavioral, emotional, and social adjustment in children with cancer. Pediatric Blood & Cancer, 51, 269–274.CrossRefGoogle Scholar
  14. Cousineau, D., & Chartier, S. (2010). Outlier detection and treatment: A review. International Journal of Psychological Research, 3, 2011–2084.Google Scholar
  15. Derogatis, L. (1993). The Brief Symptom Inventory: Administration, scoring, and procedures manual. Minneapolis, MN: National Computer Systems, Inc.Google Scholar
  16. Devins, G. M., Seland, T. P., Klein, G., Edworthy, S. M., & Saary, M. J. (1993). Stability and determinants of psychosocial well-being in multiple sclerosis. Rehabilitation Psychology, 38, 11–26.CrossRefGoogle Scholar
  17. Fedele, D. A., Ramsey, R. R., Ryan, J. L., Bonner, M. S., Mullins, L. L., Jarvis, J. N., et al. (2011). The association of illness uncertainty to parent and youth adjustment in juvenile rheumatic disease: Effect of youth age. Journal of Developmental and Behavioral Pediatrics, 32, 361–367.PubMedCrossRefGoogle Scholar
  18. Fisher, L., Skaff, M. M., Mullan, J. T., Arean, P., Mohr, D., Masharamni, U., et al. (2007). Clinical depression versus distress among patients with type 2 diabetes: Not just a question of semantics. Diabetes Care, 30, 542–548.PubMedCrossRefGoogle Scholar
  19. Fredericks, E. M., Lopez, M. J., Magee, J. C., Shieck, V., & Opipari-Arrigan, L. (2007). Psychological functioning, nonadherence, and health outcomes after pediatric liver transplantation. American Journal of Transplantation, 7, 1974–1983.PubMedCrossRefGoogle Scholar
  20. Gavin, L., & Wysocki, T. (2006). Associations of paternal involvement in disease management with maternal and family outcomes in families with children with chronic illness. Journal of Pediatric Psychology, 31, 481–489.PubMedCrossRefGoogle Scholar
  21. Gerhardt, C. A., Vannatta, K., McKellop, J. M., Zeller, M., Taylor, J., Passo, M., et al. (2003). Comparing parental distress, family functioning, and the role of social support for caregivers with and without a child with juvenile rheumatoid arthritis. Journal of Pediatric Psychology, 28, 5–15.PubMedCrossRefGoogle Scholar
  22. Grassi, A., Corona, F., Casellato, A., Carnelli, V., & Bardare, M. (2008). Prevalence and outcome of juvenile idiopathic arthritis-associated uveitis and relation to articular disease. Journal of Rheumatology, 34, 1139–1145.Google Scholar
  23. Greenblatt, R. L., & Landsberger, S. A. (2002, August). An item-based factor analysis of the Brief Symptom Inventory. Poster presented at the 2002 American Psychological Association Annual Convention, Chicago, IL.Google Scholar
  24. Hagglund, K. J., Vieth, A. Z., Sadler, C. S., Johnson, J. C., & Hewett, J. E. (2000). Caregiver personality characteristics and adaptation to juvenile rheumatic disease. Rehabilitation Psychology, 45, 242–259.CrossRefGoogle Scholar
  25. Hewlett, S., Cockshot, Z., Byron, M., Kitchen, K., Tipler, S., Pope, D., et al. (2005). Patients’ perceptions of fatigue in rheumatoid arthritis: Overwhelming, uncontrollable, ignored. Arthritis, Care, & Research, 53, 697–702.CrossRefGoogle Scholar
  26. Hochberg, M., Chang, R., Dwosh, I., Lindsey, S., Pincus, T., & Wolfe, F. (1992). The American College of Rheumatology 1991 revised criteria for the classification of global functional status in rheumatoid arthritis. Arthritis and Rheumatism, 35, 498–502.PubMedCrossRefGoogle Scholar
  27. Holmbeck, G. N. (1997). Toward terminological, conceptual, and statistical clarity in the study of mediators and moderators: Examples from the child-clinical and pediatric psychology literatures. Journal of Consulting and Clinical Psychology, 65, 599–610.PubMedCrossRefGoogle Scholar
  28. Hommel, K. A., Chaney, J. M., Wagner, J. L., & Jarvis, J. N. (2006). Learned helplessness in children and adolescents with juvenile rheumatic disease. Journal of Psychosomatic Research, 60, 73–81.PubMedCrossRefGoogle Scholar
  29. Iobst, E., Nabors, L., Brunner, H., & Precht, B. (2007). Pain, fatigue, family functioning, and attitude toward illness in children with juvenile rheumatoid diseases. Journal of Developmental and Physical Disabilities, 19, 135–144.CrossRefGoogle Scholar
  30. Kazak, A., Rourke, M., & Crump, T. (2003). Families and other systems in pediatric psychology. In M. Roberts (Ed.), Handbook of pediatric psychology (3rd ed., pp. 159–175). New York: Guilford Press.Google Scholar
  31. Kovacs, M. (2003). Children’s Depression Inventory (CDI) technical manual update. Tonawanda, NY: Multi-Health Systems.Google Scholar
  32. LeBovidge, J., Lavigne, J., & Miller, M. (2005). Adjustment to chronic arthritis of childhood: The roles of illness-related stress and attitude toward illness. Journal of Pediatric Psychology, 30, 273–286.PubMedCrossRefGoogle Scholar
  33. Lopez, W. L., Mullins, L. L., Wolfe-Christensen, C., & Bourdeau, T. (2008). The relation between parental psychological distress and adolescent anxiety in youths with chronic illnesses: The mediating effect of perceived child vulnerability. Children’s Health Care, 37, 171–182.CrossRefGoogle Scholar
  34. Lustig, J. L., Ireys, H. T., Sills, E. M., & Walsh, B. B. (1996). Mental health of mothers of children with juvenile rheumatoid arthritis: Appraisal as a mediator. Journal of Pediatric Psychology, 21, 719–733.PubMedCrossRefGoogle Scholar
  35. MacKinnon, D. P., Fairchild, A. J., & Fritz, M. S. (2007). Mediation analysis. Annual Review of Psychology, 58, 593–614.PubMedCrossRefGoogle Scholar
  36. Minden, K., Niewerth, M., Listing, J., Biedermann, T., Bollow, M., Schontube, M., et al. (2002). Long-term outcome in patients with juvenile idiopathic arthritis. Arthritis and Rheumatism, 46, 2392–2401.PubMedCrossRefGoogle Scholar
  37. Moskowitz, J. T., Butensky, E., Harmatz, P., Vichinsky, E., Heyman, M. B., Acree, M., et al. (2007). Caregiving time in sickle cell disease: Psychological effects in maternal caregivers. Pediatric Blood & Cancer, 48, 64–71.CrossRefGoogle Scholar
  38. Olson, J. M., Goffin, R. D., & Haynes, G. A. (2007). Relative versus absolute measures of explicit attitudes: Implications for predicting diverse attitude-relevant criteria. Journal of Personality and Social Psychology, 93, 907–926.PubMedCrossRefGoogle Scholar
  39. Packham, J. C., & Hall, M. A. (2002). Long-term follow-up of 246 adults with juvenile idiopathic arthritis: Functional outcome. Rheumatology, 41, 1428–1435.PubMedCrossRefGoogle Scholar
  40. Plasqui, G. (2008). The role of physical activity in rheumatoid arthritis. Physiology & Behavior, 94, 270–275.CrossRefGoogle Scholar
  41. Preacher, K. J., & Hayes, A. F. (2004). SPSS and SAS procedures for estimating indirect effects in simple mediation models. Behavior Research Methods, Instruments, & Computers, 36, 717–731.CrossRefGoogle Scholar
  42. Preacher, K. J., & Hayes, A. F. (2008). Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behavior Research Methods, 40, 879–891.PubMedCrossRefGoogle Scholar
  43. Raina, P., O’Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Rullell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, E626–E636.PubMedCrossRefGoogle Scholar
  44. Ramsey, R. R., Bonner, M. S., Ryan, J. L., Mullins, L. L., & Chaney, J. M. (2013a). The prospective examination of attitudes toward illness on depressive symptoms in youth with juvenile rheumatic diseases. Journal of Developmental and Physical Disabilities, 2, 171–180.CrossRefGoogle Scholar
  45. Ramsey, R. R., Ryan, J. L., Bonner, M. S., Fedele, D. A., Mullins, L. L., Jarvis, J. N., & Chaney, J. M. (2013b). The mediating role of children’s causal attributions in the parent distress-child depressive symptom association in juvenile rheumatic disease. Journal of Developmental and Physical Disabilities. Advance online publication. doi: 10.1007/s10882-012-9294-0.
  46. Ryan, J. L., Ramsey, R. R., Fedele, D. A., Mullins, L. L., Chaney, J. M., & Jarvis, J. N. (2010). A longitudinal examination of the parent-child distress relationship in children with juvenile rheumatic disease. Rehabilitation Psychology, 55, 286–291.PubMedCrossRefGoogle Scholar
  47. Sacks, J. J., Helmick, C. G., Luo, Y. H., Ilowite, N. T., & Bowyer, S. (2007). Prevalence of and annual ambulatory health care visits for pediatric arthritis and other rheumatologic conditions in the United States in 2001–2004. Arthritis Care & Research, 57, 1439–1445.CrossRefGoogle Scholar
  48. Saunders, J. A., Morrow-Howell, N., Spitznagel, E., Dore, P., Proctor, E. K., & Pescarino, R. (2006). Imputing missing data: A comparison of methods for social work researchers. Social Work Research, 30, 19–31.CrossRefGoogle Scholar
  49. Wade, S. L., Walz, N. C., Carey, J., McMullen, K. M., Cass, J., Mark, E., et al. (2012). A randomized trial of teen online problem solving: Efficacy in improving caregiver outcomes after brain injury. Health Psychology, 31, 767–776.PubMedCrossRefGoogle Scholar
  50. Wagner, J., Chaney, J., Hommel, K., Andrews, N., & Jarvis, J. (2007). A cognitive-diathesis stress model of depressive symptoms in children and adolescents with juvenile rheumatic disease. Children’s Health Care, 36, 45–62.CrossRefGoogle Scholar
  51. Wagner, J. L., Smith, G., Ferguson, P. L., Horton, S., & Wilson, E. (2009). A hopelessness model of depressive symptoms in youth with epilepsy. Journal of Pediatric Psychology, 34, 89–96.PubMedCrossRefGoogle Scholar
  52. Wells, D. K., James, K., Stewart, J. L., Moore, I. M., Kelly, K. P., Moore, B., et al. (2002). The Care of My Child with Cancer: A new instrument to measure caregiving demand in parents of children with cancer. Journal of Pediatric Nursing, 17, 201–210.PubMedCrossRefGoogle Scholar
  53. Wolfe-Christensen, C., Mullins, L. L., Fedele, D. A., Rambo, P. L., Eddington, A. R., & Carpentier, M. Y. (2010). The relation of caregiver demand to adjustment outcomes in children with cancer: The moderating role of parenting stress. Children’s Health Care, 39, 108–124.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  • Jamie L. Ryan
    • 1
  • Larry L. Mullins
    • 1
  • Rachelle R. Ramsey
    • 1
  • Margaret S. Bonner
    • 1
  • James N. Jarvis
    • 2
  • Stephen R. Gillaspy
    • 3
  • John M. Chaney
    • 1
  1. 1.Department of PsychologyOklahoma State UniversityStillwaterUSA
  2. 2.Department of PediatricsColumbia University Medical CenterNew YorkUSA
  3. 3.Department of General PediatricsUniversity of Oklahoma Health Sciences CenterOklahoma CityUSA

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