The Impact of "Self-Perceived Burden to Others" and "Posttraumatic Growth" on Quality of Life for Terminally Ill Cancer Patients

Project: National Science and Technology CouncilNational Science and Technology Council Academic Grants

Project Details

Abstract

The WHO recognizes that the main goal of end-of-life care is to achieve the best quality of life (QOL) for patients and their families. Given that advancing illness fluctuates in its clinical presentation, evaluations of QOL may be similarly dynamic and subject to change. However, the limited available longitudinal studies were conducted over varying time-frames, therefore, inconsistent pattern of changes in QOL for terminally ill cancer patients toward the end of life was revealed in the literature. Terminally ill cancer patients commonly have a strong feeling that they impose physical, emotional, social, and economic hardships on their families without opportunities to restore balance between receiving and giving help and support from and to their families. Researchers identified “self-perceived burden to others”as one of the most important themes that is related to existential suffering at the end of life. However, the impact of self-perceived burden to others on QOL or decision-making at the end of life has not yet been investigated in Taiwan. Facing mortality and realizing the fragility of life may foster a positive shift or transformation in one’s perspective on life—which was described as posttraumatic growth (PTG). The literature examining PTG is overwhelmingly based on samples of early-stage breast cancer survivors. Relying on knowledge gained from cancer survivors may bias our understanding of the potential positive legacy of death and dying. The specific primary aims of this study are to: (1) examine the trajectory of QOL of terminally ill cancer patients; and (2) investigate the roles of “self-perceived burden to others”and “PTG”on QOL of terminally ill cancer patients. The secondary aims are to identify determinants of “self-perceived burden to others”and “posttraumatic growth”for terminally ill cancer patients. A 3-year prospective, longitudinal and descriptive study will be conducted. 268 pairs of terminally ill cancer patients and their primary family caregivers will be recruited by a convenience sampling strategy. Several well-established instruments, including MQOL, SPBS, PTGI, SDS, ESDS, MOS Social Support Survey, SOC Scale, and CRA will be used to measure potential predictors of proposed outcomes. Subjects will be interviewed at a two-week interval until the death of the patient. Generalized estimating equation (GEE) model will be conducted to examine the pattern of changes of QOL, “self-perceived burden to others”and PTG as well as determinants of QOL, “self-perceived burden to others”and “PTG”. Identifying the common trajectory of QOL for terminally ill cancer patients may assist health professionals to timely detect changes in QOL and to respond with appropriate interventions to promote QOL at the optimal level. Findings from this study also shed light on factors that may facilitate or impede adjustment to death and dying at the end of life. These insights may lay the groundwork for targeting those aspects for which improving PTG most likely to result in improvements in psychological and existential-spiritual well-being to help terminally ill cancer patients retain control, find meaning and growth in dying experiences, minimize or alleviate distress arising from the feelings of being a burden to others, enhance PTG, and ultimately achieve the highest QOL.

Project IDs

Project ID:PC9808-0542
External Project ID:NSC98-2314-B182-052
StatusFinished
Effective start/end date01/08/0931/07/10

Keywords

  • Quality of life
  • self-perceived burden to others
  • posttraumatic growth
  • terminally ill cancer patients
  • end-of-life care

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