Parental caregiving of children prior to hematopoietic stem cell transplant.

Angie Mae Rodday, Elizabeth J Pedowitz, Deborah K Mayer, Sara J Ratichek, Charles W Given, Susan K Parsons, HSCT-CHESS Study
Author Information
  1. Angie Mae Rodday: The Health Institute, Tufts Medical Center, Boston, MA, USA.

Abstract

Using the Caregiver Reaction Assessment (CRA), we assessed positive reactions and burdens of the caregiving experience among parental caregivers (n = 189) of children scheduled to undergo hematopoietic stem cell transplant. Although widely used in non-parental caregivers, the CRA has not been used in parents of pediatric patients. Reliability (Cronbach's alpha: .72-.81 vs. .63) and concurrent validity (correlation: .41-.61 vs. .28) were higher for negatively framed than positively framed subscales. Results indicate that the caregiving experience is complex. The parents experienced high caregiver's esteem and moderate family support, but also negative impacts on finances and schedule, and to a lesser degree, health. Compared to non-parental caregivers, parental caregivers experienced higher esteem and more impact on finances and schedule.

References

  1. CA Cancer J Clin. 2001 Jul-Aug;51(4):213-31 [PMID: 11577488]
  2. Int J Impot Res. 2004 Feb;16(1):30-8 [PMID: 14963468]
  3. J Palliat Med. 2010 Apr;13(4):421-6 [PMID: 20144024]
  4. Fam Med. 1991 Jul;23(5):357-60 [PMID: 1884930]
  5. J Pediatr Psychol. 2007 Aug;32(7):851-6 [PMID: 17426044]
  6. Psychooncology. 2006 Jun;15(6):517-27 [PMID: 16189843]
  7. Res Nurs Health. 1992 Aug;15(4):271-83 [PMID: 1386680]
  8. Health Serv Res. 2005 Dec;40(6 Pt 1):1918-30 [PMID: 16336556]
  9. Sociol Health Illn. 2007 Jan;29(1):66-81 [PMID: 17286706]
  10. Med Care. 1980 Apr;18(4):465-72 [PMID: 7401703]
  11. Biometrics. 1977 Mar;33(1):159-74 [PMID: 843571]
  12. J Dev Behav Pediatr. 2003 Feb;24(1):9-16 [PMID: 12584480]
  13. J Am Geriatr Soc. 2009 Nov;57 Suppl 2:S293-5 [PMID: 20122032]
  14. Pediatr Blood Cancer. 2004 Sep;43(3):267-74 [PMID: 15266412]
  15. J Clin Epidemiol. 1992 Nov;45(11):1303-13 [PMID: 1432010]
  16. Gerontologist. 2000 Dec;40(6):738-46 [PMID: 11131090]
  17. Gerontologist. 1993 Aug;33(4):542-50 [PMID: 8375685]
  18. J Pediatr Oncol Nurs. 2009 Jul-Aug;26(4):223-9 [PMID: 19726794]
  19. Psychooncology. 2003 Oct-Nov;12(7):709-19 [PMID: 14502595]
  20. Soc Sci Med. 1999 May;48(9):1259-69 [PMID: 10220024]
  21. J Pediatr Psychol. 2003 Oct-Nov;28(7):447-52 [PMID: 12968036]
  22. Support Care Cancer. 2008 Apr;16(4):347-57 [PMID: 17891502]
  23. Child Care Health Dev. 2000 Nov;26(6):457-69 [PMID: 11091262]
  24. Arthritis Rheum. 2004 Aug 15;51(4):570-7 [PMID: 15334429]
  25. Eur J Cancer Care (Engl). 2011 Jul;20(4):483-92 [PMID: 20825458]
  26. Disabil Rehabil. 2010;32(19):1558-67 [PMID: 20590506]
  27. Med Care. 2003 May;41(5):582-92 [PMID: 12719681]
  28. J Pediatr Psychol. 2006 Nov-Dec;31(10):1100-15 [PMID: 16150874]
  29. Med Care Res Rev. 2012 Apr;69(2):194-214 [PMID: 22203645]
  30. Patient Educ Couns. 2009 Oct;77(1):116-22 [PMID: 19356881]
  31. Am J Cardiol. 2004 Mar 1;93(5):582-7 [PMID: 14996583]
  32. Qual Life Res. 2005 Aug;14(6):1613-25 [PMID: 16110940]
  33. Psychooncology. 2009 May;18(5):515-23 [PMID: 18756585]

Grants

  1. R01 CA112631/NCI NIH HHS
  2. R01 CA119196/NCI NIH HHS
  3. R01 CA160684/NCI NIH HHS
  4. R01 CA 119196/NCI NIH HHS

MeSH Term

Adult
Caregivers
Child
Cost of Illness
Female
Financing, Personal
Hematopoietic Stem Cell Transplantation
Humans
Male
Parent-Child Relations
Parents
Personal Satisfaction
Psychometrics
Quality of Life
Reproducibility of Results
Self Concept
Surveys and Questionnaires

Word Cloud

Created with Highcharts 10.0.0caregiverscaregivingCRAexperienceparentalchildrenhematopoieticstemcelltransplantusednon-parentalparentsvshigherframedexperiencedesteemfinancesscheduleUsingCaregiverReactionAssessmentassessedpositivereactionsburdensamongn=189scheduledundergoAlthoughwidelypediatricpatientsReliabilityCronbach'salpha:72-8163concurrentvaliditycorrelation:41-6128negativelypositivelysubscalesResultsindicatecomplexhighcaregiver'smoderatefamilysupportalsonegativeimpactslesserdegreehealthComparedimpactParentalprior

Similar Articles

Cited By