Family caregiving in advanced chronic organ failure

J Am Med Dir Assoc. 2012 May;13(4):394-9. doi: 10.1016/j.jamda.2011.04.017. Epub 2011 May 31.


Objectives: To assess caregiver burden as well as positive aspects of family caregiving in advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and chronic renal failure (CRF).

Design: Cross-sectional observational study.

Setting: Patients recruited at the outpatient clinics of academic and general hospitals in the Netherlands.

Participants: Patients with advanced COPD (n = 73), CHF (n = 45), and CRF (n = 41) and their family caregivers.

Measurements: Caregiver burden and positive aspects of caregiving were assessed using the Family Appraisal of Caregiving Questionnaire for Palliative Care and were compared among family caregivers of patients with COPD, CHF, or CRF using linear regression analysis while controlling for characteristics of patients and family caregivers.

Results: Most family caregivers were female partners of participating patients. Caregiver distress and caregiver strain scores were relatively low, whereas scores for positive caregiving appraisals and family well-being were relatively positive. Caregiver strain, positive caregiving appraisals, and family well-being were comparable for family caregivers of patients with COPD, CHF, or CRF. Caregiver distress was higher for family caregivers of patients with COPD than CHF. The experience of caregiving was influenced by being the patient's spouse, patient's psychological symptoms, and the presence of comorbidities.

Conclusions: Family caregiving for patients with COPD, CHF, or CRF should not only be seen as a burden, but also as a positive experience. To support family caregivers, attention should be paid to caregiver burden and the positive aspects of family caregiving.

Publication types

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

MeSH terms

  • Aged
  • Aged, 80 and over
  • Caregivers / psychology*
  • Cross-Sectional Studies
  • Family Relations
  • Female
  • Heart Failure / diagnosis
  • Heart Failure / nursing*
  • Humans
  • Longitudinal Studies
  • Male
  • Middle Aged
  • Multiple Organ Failure / diagnosis
  • Multiple Organ Failure / nursing
  • Needs Assessment
  • Netherlands
  • Pulmonary Disease, Chronic Obstructive / diagnosis
  • Pulmonary Disease, Chronic Obstructive / nursing*
  • Quality of Life
  • Renal Insufficiency, Chronic / diagnosis
  • Renal Insufficiency, Chronic / nursing*
  • Risk Assessment
  • Self-Help Groups
  • Severity of Illness Index
  • Stress, Psychological
  • Surveys and Questionnaires