Reciprocal suffering: Caregiver concerns during hospice care

Elaine Wittenberg-Lyles, George Demiris, Debra Parker Oliver, Stephanie Burt

Research output: Contribution to journalArticlepeer-review

29 Scopus citations


Context: For many hospice caregivers, the constancy and difficulty of caregiving impact their physical quality of life and cause depression, psychological distress, guilt, loneliness, and restrictions on social activities. Objectives: Deviating from traditional unidimensional research on hospice caregivers, this study explored the transactional nature of reciprocal suffering by examining caregiver concerns through four dimensions: physical, psychological, social, and spiritual. Methods: Researchers analyzed audiotapes of intervention discussions between hospice caregivers and research social workers. Results: Results indicated that, of the 125 pain talk utterances, most referenced psychological concern (49%), followed by physical (28%), social (22%), and spiritual (2%) concerns. Reflections on concerns revealed a global perspective of caregiving, which highlighted the patient's needs juxtaposed to the caregiver's recognized limitations. Conclusion: By examining the reciprocal nature of suffering for caregivers, this study reinforced the need for assessing caregivers in hospice care, with specific emphasis on the importance of providing caregiver education on pain management.

Original languageEnglish
Pages (from-to)383-393
Number of pages11
JournalJournal of Pain and Symptom Management
Issue number2
StatePublished - Feb 2011


  • Caregiver
  • caregiver burden
  • caregiver quality of life
  • hospice
  • pain management
  • suffering


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