Parental caregiving of children prior to hematopoietic stem cell transplant

Authors

  • Angie Mae Rodday,

    1. The Health Institute, Tufts Medical Center, Boston, MA
    2. Tufts University Sackler School of Biomedical Sciences, Boston, MA
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    • Research Associate, The Health Institute; PhD Candidate, Tufts University Sackler School of Biomedical Sciences.

  • Elizabeth J. Pedowitz,

    1. The Health Institute, Tufts Medical Center, Boston, MA
    2. Mount Sinai School of Medicine, New York, NY
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    • Formerly: Research Assistant, The Health Institute; Currently: Medical Student, Mount Sinai School of Medicine.

  • Deborah K. Mayer,

    1. School of Nursing, University of North Carolina-Chapel Hill, Chapel Hill, NC
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    • Associate Professor, School of Nursing; Editor, Clinical Journal of Oncology Nursing.

  • Sara J. Ratichek,

    1. The Health Institute, Tufts Medical Center, Boston, MA
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    • Project Director.

  • Charles W. Given,

    1. Department of Family Practice, College of Human Medicine, Michigan State University, East Lansing, MI
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    • Professor, Department of Family Practice.

  • Susan K. Parsons,

    Corresponding author
    1. The Health Institute, Tufts Medical Center, Boston, MA
    2. Departments of Medicine and Pediatrics, Tufts University School of Medicine, 800 Washington St., #345, Boston, MA 02111
    • The Health Institute, Tufts Medical Center, Boston, MA
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    • Professor, Departments of Medicine and Pediatrics; Director, The Health Institute.

  • on behalf of the HSCT-CHESS Study

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    • Please see Appendix 1 for full listing of study staff and collaborators.


  • Funding was provided for this study from the National Cancer Institute (R01 CA 119196 to S. K. P.).

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. © 2012 Wiley Periodicals, Inc. Res Nurs Health 35:328–339, 2012

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