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
External Project ID:NSC98-2314-B182-052
Status | Finished |
---|---|
Effective start/end date | 01/08/09 → 31/07/10 |
Keywords
- Quality of life
- self-perceived burden to others
- posttraumatic growth
- terminally ill cancer patients
- end-of-life care
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