Caregiver burden, patients' self-perceived burden, and preference for palliative care among cancer patients and caregivers

Psychooncology. 2015 Nov;24(11):1545-51. doi: 10.1002/pon.3827. Epub 2015 Apr 29.

Abstract

Objective: Recently, caregiver burden (CB) has emerged as an important issue in the area of palliative medicine. However, patients' feelings related to being a burden to their families (i.e., self-perceived burden [SPB]) is also a significant issue. We evaluated the relation of CB and SPB as preference for palliative care.

Methods: A national, multicenter, cross-sectional survey of 326 patient-caregiver dyads was performed. A set of paired questionnaires evaluating CB and SPB (five domain items assessed on a four-point Likert scale) were independently administered to patients and their caregivers. Among the respondents, only the patients with distant stage cancer and their caregivers were included. Multivariate analyses were conducted to identify the associations between CB and SPB and preference for palliative care.

Results: Caregivers and patients who preferred palliative care to life sustaining treatment reported higher CB and SPB scores, respectively. Caregivers who felt more of a burden were more likely to prefer palliative care over life sustaining treatment for their patients (adjusted odds ratio [aOR] = 1.67, 95% CI: 1.21-2.31). In addition, patients who perceived their caregivers' burden as large tended to prefer palliative care (aOR = 1.61, 95% CI: 1.16-2.22).

Conclusions: Both CB and SPB increased preference for palliative care. This could be interpreted that high CB can lead to preference for palliative care in both patients and their caregivers, potentially threatening patient autonomy. Efforts to relieve CB and SPB are needed.

Publication types

  • Multicenter Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Caregivers / psychology*
  • Caregivers / statistics & numerical data
  • Cost of Illness*
  • Cross-Sectional Studies
  • Female
  • Humans
  • Male
  • Middle Aged
  • Neoplasms / psychology*
  • Neoplasms / therapy*
  • Palliative Care / psychology*
  • Patient Preference / statistics & numerical data*
  • Republic of Korea
  • Self Concept*
  • Surveys and Questionnaires