Self-perceived burden in terminally ill cancer patients: A categorization of care strategies based on bereaved family members' perspectives

Terukazu Akazawa, Tatsuo Akechi, Tatsuya Morita, Mitsunori Miyashita, Kazuki Sato, Satoru Tsuneto, Yasuo Shima, Toshiaki A. Furukawa

Research output: Contribution to journalArticlepeer-review

22 Citations (Scopus)


Context: Terminally ill cancer patients often experience a self-perceived burden that affects their quality of life; however, no standard care strategy for coping with this form of suffering has ever been established. Objectives: The objectives of this present study were 1) to investigate the prevalence of self-perceived burden among terminally ill cancer patients based on a survey of family members, 2) to assess the level of family perceived usefulness of expert-recommended care strategies, and 3) to categorize the care strategies. Methods: The subjects were bereaved family members of patients who had died in certified palliative care units throughout Japan. The Good Death Inventory was used to evaluate patients' self-perceived burden based on the proxy ratings of family members. The perceived usefulness of care was assessed using a 27-item questionnaire developed by a focus group of palliative experts and a systematic review. Results: A total of 429 responses (64%) received from a member of each of 666 bereaved families was analyzed. In their responses, 25% of the bereaved family members reported that the patient had experienced a mild self-perceived burden, whereas 25% reported that the patient had experienced a moderate to severe self-perceived burden. The family members recommended the following as particularly effective care strategies: "Eliminate pain and other symptoms that restrict patient activity (53%);" "Quickly dispose of urine and stools so that they are out of sight (52%);" and "Support patients' efforts to care for themselves (45%)." A factor analysis showed that the expert-recommended care strategies could be categorized into seven different components. Conclusion: Many terminally ill cancer patients suffer from a self-perceived burden. Family members recommended a variety of care strategies to alleviate patient-perceived burden. Palliative care specialists should have adequate knowledge of promising care strategies for alleviating patient-perceived burden.

Original languageEnglish
Pages (from-to)224-234
Number of pages11
JournalJournal of Pain and Symptom Management
Issue number2
Publication statusPublished - 2010 Aug


  • Self-perceived burden
  • palliative care
  • suffering
  • terminally ill

ASJC Scopus subject areas

  • Nursing(all)
  • Clinical Neurology
  • Anesthesiology and Pain Medicine

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