The Shady Pink Elephant: End of Life Education for Young Women Affected by Breast Cancer

Abstract

In an effort to improve participation of younger breast cancer survivors in end of life (EOL) discussions and planning, this study evaluated the impact of The Shady Pink Elephant EOL educational series on participants' knowledge, attitudes and behaviors towards palliative care and EOL wishes. Data was gathered at baseline (pre survey and registration) following each event (post survey) and 6 months after the series as intervention (post survey). A total of 36 women with breast cancer, averaging 40 years of age, participated in the first online event, 24 in the second and 22 in the third. A total of 20 completed the 6-month post survey. Significant improvement in scores occurred from baseline to 6 months for the following items: belief that palliative care is only for those at the EOL, belief that EOL discussions are only important for those at the EOL, comfort with talking about EOL issues, confidence that EOL wishes will be honored by one's health care power of attorney and knowledge of characteristics are important in the person assigned as a person's health care power of attorney. The Shady Pink Elephant EOL educational series is therefore a promising intervention for improving EOL knowledge, attitudes and behavior. Further research with larger sample sizes is needed regarding understanding and accessing palliative care and deciding upon and communicating EOL wishes in this patient population.

Executive Summary of the Early-Onset Breast Cancer Evidence Review Conference

“…The intervention was positively received and demonstrated increased knowledge in this population, although it should be investigated on a larger scale. 16…”

Educational programs for post-treatment breast cancer survivors: a systematic review

“…There was one mixed-method study [26] and three qualitative studies [25,35,36]. For the 20 quantitative studies, there were five randomized controlled trials [9,28,[37][38][39], one longitudinal study [27], six prospective studies [7,24,30,[40][41][42], one cross-sectional studies [33], two cohort studies [43,44], two quasi-experimental studies [21,45], one secondary data analysis [46], one pilot study [47] and one non-experimental study [48]. The eight focuses of the 24 programs were concluded from all the 24 educational programs related to post-treatment survivorship care and BCSs' unique needs [7,9,24,26,30,35,36,39,40,42,44,47,48].…”

“…One educational program focused on supportive care for BCSs [25] and one focused on peer advocate support [36]. One educational program focused on palliative care and end of life care for BCSs [48]. One program focused on Mindfulness-Based Stress Reduction for Breast Cancer (MBSR (BC)) program to manage BCSs' post-treatment symptom clusters [9] and one program focused on improving the overall QOL for BCSs [39].…”

“…A literature review table was used to extract data identifying the first author, year published, study design, study setting, research aims and interventions, sample characteristics, outcome measures, data analysis, and research findings and implications for future studies (see Appendix Table 1, Ref. [7,9,21,[24][25][26][27][28]30,33,[35][36][37][38][39][40][41][42][43][44][45][46][47][48]). The data extrac-tion focuses on educational programs for post-treatment breast cancer survivors' physical and psychological needs found in different studies.…”

“…Results showed one program focused on BCSs' palliative care and end of life care [48]. Compared with curative care, the goal of palliative care is to offer relief from pain, symptoms, and stress for patients with advanced progressive disease.…”