Transformative aspects of caregiving at life's end

J Pain Symptom Manage. 2005 Feb;29(2):121-9. doi: 10.1016/j.jpainsymman.2004.12.008.

Abstract

We do not know to what extent the needs of caregivers involved with patients at the end of life are being met by care providers and whether caregiving at life's end can be a positive experience. We used the Hospice Experience Model of Care as a framework for understanding the effect of transformative tasks on caregiving at life's end. We compared current and bereaved caregivers and then, holding background characteristics constant, tested the independent effects of three transformative mediators: self-acceptance, meaning, and closure, as well as comfort with caregiving on several stressors when explaining differences in caregiver burden and gain. Transformative aspects of caregiving do not mediate the stressors associated with burden but do mediate one stressor associated with caregiver gain. Two mediators reduce caregiver burden and all four of the mediators improve caregiver gain. Caregivers who are able to attend to these transformative aspects find more gain in the caregiving experience.

Publication types

  • Clinical Trial
  • Randomized Controlled Trial
  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Aged
  • Attitude to Death
  • Caregivers / psychology*
  • Caregivers / statistics & numerical data*
  • Data Collection
  • Female
  • Florida / epidemiology
  • Hospice Care / psychology*
  • Hospice Care / statistics & numerical data*
  • Humans
  • Life Change Events*
  • Male
  • Outcome Assessment, Health Care / methods
  • Palliative Care / psychology
  • Palliative Care / statistics & numerical data*
  • Personal Satisfaction
  • Stress, Psychological / epidemiology*