A Continued Study of the Impact of “Self-Perceived Burden to Others” and “Posttraumatic Growth” on Quality of Life for Terminally Ill Cancer Patients

The WHO recognizes that the main goal of end-of-life (EOL) 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 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 EOL 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” (SPB) as one of the most important themes that is related to existential suffering at EOL. However, the impact of SPB on QOL for terminally ill cancer patients at EOL 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 the original proposed 3-year prospective and longitudinal study were to: (1) examine the trajectory of QOL of Taiwanese terminally ill cancer patients; and (2) investigate the roles of “SPB” and “PTG” on QOL of terminally ill cancer patients. The secondary aims are to identify determinants of “SPB” and “PTG” for terminally ill cancer patients. During the review process of 2009, concerns about using 8 instruments on terminally ill cancer patients to collect QOL and other relevant information were raised by reviewers. However, our preliminary results using the initial 4 waves of data from the 36 terminally ill cancer patients indicated that there were 6 patients attrited due to deterioration in physical condition. Results from the GEE showed that if terminally ill cancer patients reported higher PTG (β=0.20, p=.04), greater sense of coherence (β=0.94, p＜.0001), more emotional social support (β=0.59, p=.008), lower SPB (β=-0.80, p=.0002), and less symptom distress (β=-0.72, p=.03), their QOL was significantly higher. Based on experienced learned from the pilot study, a continued research that modifies sample size (from 268 to 263), total number of questions (from 111 to 86) asked to the patient, and the time interval (from weekly to two-weeks) for data collection is proposed to continue the 2009 funded research project. Therefore, a 2-year prospective, longitudinal and descriptive study will be conducted. 263 pairs of terminally ill cancer patients and their primary family caregivers will be recruited by a convenience sampling strategy. Well-established instruments, including MQOL, SPBS, PTGI, SDS, MOS Social Support Survey, and SOC Scale 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. GEE model will be conducted to examine the pattern of changes of QOL and determinants of QOL, “SPB” and “PTG”. Identifying the common trajectory of QOL for terminally ill cancer patients may assist health professionals to timely detect changes in QOL and shed light on factors that may facilitate or impede adjustment to death and dying at EOL. These insights may lay the groundwork for targeting those aspects 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 ID:PC10001-1250
External Project ID:NSC99-2628-B182-031-MY2