Advertisement

Quality of Life among Primary Caregivers of Rheumatic Patients – a South American Experience

  • F. Jennings
  • A. Jones
  • J. Natour
Reference work entry

Abstract:

Chronic diseases not only affect the lives of patients, but also have repercussions in the family as a whole, altering the lifestyle, interpersonal relationships, finances and health-related quality of life of both the patient and family members alike.

Rheumatic diseases are the most common chronic diseases, affecting approximately 20% of the adult population. Patients with rheumatoid arthritis, osteoarthritis, fibromyalgia, juvenile idiopathic arthritis and other rheumatic diseases have a lower quality of life when compared to healthy individuals.

Caregivers for these patients also experience diverse negative consequences when attempting to insert their role as caregiver into their regular activities. The principal negative aspects are depression, anxiety and physical complaints.

In Brazil, caregivers of patients with RA and JIA have a high prevalence of psychological disorders. The impact perceived by the caregivers themselves is more correlated to emotional aspects than the physical conditions of the patient.

Keywords

Rheumatoid Arthritis Juvenile Idiopathic Arthritis Down Syndrome Rheumatic Disease Primary Caregiver 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

List of Abbreviations:

CB Scale

 caregiver burden scale

CVA

cerebral vascular accident

JIA

juvenile idiopathic arthritis

OA

osteoarthritis

OP

osteoporosis

RA

rheumatoid arthritis

SF-36

short-form health survey

SRQ-20

psychiatric screening questionnaire

References

  1. Anderson CS, Linto J, Stewart-Wynne EG. (1995). Stroke. 26(5): 843–849.Google Scholar
  2. Barnett WS, Boyce GC. (1995). Am J Ment Retard. 100(2): 115–127.PubMedGoogle Scholar
  3. Beck JC, Stuck A. (1996). JAMA. 276(21): 1756–1757.PubMedCrossRefGoogle Scholar
  4. Belasco AG, Sesso R. (2002). Am J Kidney Dis. 39(4): 805–812.PubMedCrossRefGoogle Scholar
  5. Birtane M, Uzunca K, Taştekin N, Tuna H. (2007). Clin Rheumatol. 26: 679–684.PubMedCrossRefGoogle Scholar
  6. Bruns A, Hilario MO, Jennings F, Silva CA, Natour J. (2008). Joint Bone Spine. 75(2): 149–154.PubMedCrossRefGoogle Scholar
  7. Cook C, Pietrobon R, Hegedus E. (2007). Rehumatol Intern. 27(4): 315–321.CrossRefGoogle Scholar
  8. Corcoran MA. (1994). Am J Occup Ther. 48(1): 38–45.PubMedGoogle Scholar
  9. Daltroy LH, Larson MG, Eaton HM, Partridge AJ, Pless IB, Rogersm MP, Liang MH. (1992). J Pediatr Psychol. 17: 277–289.PubMedCrossRefGoogle Scholar
  10. Draper BM, Cole CJ, Poulos AD, Ehrllch F. (1992). J Am Geriatr Soc. 40: 896–901.PubMedGoogle Scholar
  11. Drinka TJ, Smith J, Drinka PJ. (1987). J Am Geriatr Soc. 35: 522–525.PubMedGoogle Scholar
  12. Elmstahl S, Malmberg B, Annerstedt L. (1996). Arch Phys Med Rehabil. 77(2): 177–182.Google Scholar
  13. England M, Roberts BL. (1996). Res Nurs Health. 19: 499–510.PubMedCrossRefGoogle Scholar
  14. Ferrans CE, Powers MJ. (1992). Res Nurs e Health. 15: 29–38.CrossRefGoogle Scholar
  15. Fink SV. (1995). Nurs Res. 44(3): 139–146.PubMedCrossRefGoogle Scholar
  16. Fitzpatrick R, Fletcher A, Gore S, Jones D, Spiegelhalter D, Cox D. (1992). BMJ. 305: 1074–1077.PubMedCrossRefGoogle Scholar
  17. Frank RG, Hagglund KJ, Schopp LH, Thayer JF, Vieth AZ, Cassidy JT, Goldstein DE, Beck NC, Clay DL, Hewett JE, Johnson JC, Chaney JM, Kashani JH. (1998). Arthritis Care Res. 11: 166–176.PubMedCrossRefGoogle Scholar
  18. Gallagher D, Rose J, Rivera P, Lovett S, Thompson LW. (1989). Gerontologist. 29: 449–456.PubMedGoogle Scholar
  19. Grad J, Sainsbury P. (1963). Lancet. I: 544–547.CrossRefGoogle Scholar
  20. Gerhardt CA, Vannatta K, McKellop JM, Zeller M, Taylor J, Passo M, Noll RB. (2003). J Pediatr Psychol. 28(1): 5–15.PubMedCrossRefGoogle Scholar
  21. Grafstrom M, Fratiglioni L, Sandman PO, Winblad B. (1992). J Clin Epidemiol 45(8): 861–870.PubMedCrossRefGoogle Scholar
  22. Gutierrez-Suarez R, Pistorio A, Cespedes Cruz A, Norambuena X, Flato B, Rumba I, Harjacek M, Nielsen S, Susic G, Mihaylova D, Huemer C, Melo-Gomes J, Andersson-Gare B, Balogh Z, De Cunto C, Vesely R, Pagava K, Romicka AM, Burgos-Vargas R, Martini A, Ruperto N. (2007). Rheumatology. 46: 314–320.PubMedCrossRefGoogle Scholar
  23. Hulstijn-Dirkmaat GM, Damhuis EH. (1994). Acta Pediatr. 83(9): 972–976.CrossRefGoogle Scholar
  24. Lawton MP, Kleban MH, Moss M, Rovine M, Gllcksman A. (1989). Gerontol. 44(3): 61–71.Google Scholar
  25. Lips P, Van Schoor NM. (2005). Osteoporos Int. 16: 447–455.PubMedCrossRefGoogle Scholar
  26. Livingston G, Manela M, Katona C. (1996). BMJ. 312: 153–156.PubMedGoogle Scholar
  27. Lustig JL, Ireys HT, Sills EM, Walsh BB. (1995). J Pediatr Psychol. 21: 719–733.CrossRefGoogle Scholar
  28. Maurin JJ, Boyd CB. (1990). Arch Psychiatr Nurs. 6(2): 99–107.CrossRefGoogle Scholar
  29. McCormick MC, Stempler MM, Athreya B. (1986). Arthritis Rheum. 29: 872–879.PubMedCrossRefGoogle Scholar
  30. Medeiros MMC, Ferraz MB, Quaresma MR. (1998). Braz J Rheumatol. 38: 193–199.Google Scholar
  31. Medeiros MMC, Ferraz MB, Quaresma MR. (2000). J Rheumatol. 27: 76–83.Google Scholar
  32. Mirowsky J, Ross CE. (1992). J Health Soc Behav. 33: 187–205.PubMedCrossRefGoogle Scholar
  33. Montgomery RV, Stull DE, Borgatta EF. (1985). Res Aging. 7: 137–151.PubMedCrossRefGoogle Scholar
  34. Musolf JM. (1991). Rehabil Nurs. 16(2): 82–84.PubMedGoogle Scholar
  35. Poulshock SW, Deimling GT. (1984). J Gerontol. 39: 159–164.Google Scholar
  36. Pruchno RA, Resch NL. (1989). Gerontologist. 29: 159–164.PubMedGoogle Scholar
  37. Ramos LR, Veras RP, Kalache A. (1987). Rev Saúde Pública. 21: 211–224.PubMedCrossRefGoogle Scholar
  38. Reich JW, Zautra AJ. (1995). J Behav Med. 18(3): 249–260.PubMedCrossRefGoogle Scholar
  39. Resine ST. (1995). Arthritis Care Res. 8: 265–271.CrossRefGoogle Scholar
  40. Rosemann T, Grol R, Hermann K, Wensing M, Szecsenyi J. (2008). Int J Behav. Nutr Phys Act. 5: 4.PubMedCrossRefGoogle Scholar
  41. Russo J, Vitaliano PP, Brewer DD, Katon W, Becker J. (1995). J Abnorm Psychol. 104: 197–204.PubMedCrossRefGoogle Scholar
  42. Schulz R, O'Brien AT, Bookwala J, Fleissner K. (1995). Gerontologist. 35(6): 771–791.PubMedGoogle Scholar
  43. Seltzer MM, Li LW. (1996). Gerontologist. 36(5): 614–626.PubMedGoogle Scholar
  44. Silver E, Bauman L, Ireys H. (1995). Health Psychol. 14(4): 333–340.PubMedCrossRefGoogle Scholar
  45. Skaff MM, Pearlln LI. (1992). Gerontologist. 32: 656–664.PubMedGoogle Scholar
  46. Stone R, Cafferate GL, Sangl J. (1987). Gerontologist. 27: 616–626.PubMedGoogle Scholar
  47. Timko C, Stovel K, Moos R. (1992). J Pediatric Psychol. 17: 705–724.CrossRefGoogle Scholar
  48. Townsend A, Noelker L, Deimling G, Bass D. (1989). Psychol Aging. 4: 393–401.PubMedCrossRefGoogle Scholar
  49. Vandvik IH, Eckblad G. (1991). J Dev Behav Pediatr. 12: 84–91.PubMedCrossRefGoogle Scholar
  50. Vandvik IH, Høyeraal HM, Fagertun H. (1989). J Rheumatol. 16(8): 1088–1092.PubMedGoogle Scholar
  51. Walker JG, Littlejohn GO. (2007). Clin Rheumatol. 26: 671–673.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • F. Jennings
    • 1
  • A. Jones
    • 1
  • J. Natour
    • 1
  1. 1.Universidade Federal de São PauloRheumatology DivisionSão PauloBrazil

Personalised recommendations