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

Abstract

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.

• Authors: Terukazu Akazawa, Tatsuo Akechi, Tatsuya Morita, Mitsunori Miyashita, Kazuki Sato, Satoru Tsuneto, Yasuo Shima, Toshiaki A Furukawa
• Journal: Journal of pain and symptom management (J Pain Symptom Manage) Vol. 40 Issue 2 Pg. 224-34 (Aug 2010) ISSN: 1873-6513 [Electronic] United States
• PMID: 20541903 (Publication Type: Journal Article, Research Support, Non-U.S. Gov't)
• Copyright: Copyright (c) 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Topics

• Adaptation, Psychological
• Bereavement
• Cross-Sectional Studies
• Family (psychology)
• Female
• Humans
• Male
• Neoplasms (psychology)
• Quality of Life
• Surveys and Questionnaires
• Terminally Ill (psychology)