The benefits and burdens of patient advocacy.

Abstract

204 Background: Patient advocates share their time and experience to improve cancer research, care, and support. Advocacy can be rewarding and empowering, and survivors and caregivers express a variety of reasons for engaging in advocacy. Yet, advocacy can also come with mental and emotional costs. Challenges include the grief of losing friends to cancer, the related “survivors’ guilt”, and the burden of repeatedly reliving their experience. The National Coalition for Cancer Survivorship (NCCS) conducted a survey to better understand the experience of patient advocates, and actions that organizations can take to recognize and support advocates. Methods: NCCS convened two focus groups with 10 advocates (the “working group”) to understand factors that contribute to advocates feeling rewarded or burned out from advocacy. We reviewed the transcripts to identify themes and reviewed the literature. We developed a survey and included a validated, non-proprietary, single-item burnout measure used for health care professionals. We built the survey online and tested with select working group members. We disseminated the survey to NCCS’ advocacy network, and working group members shared with their networks. Results: As of June 1, we received 176 responses, with the survey will open for another week. The initial data show that the vast majority of respondents find their advocacy work rewarding (97%), empowering (93%), and a positive impact on their lives (96%). At the same time, 29.5% of respondents indicated they have symptoms of burnout, including emotional and physical exhaustion. Respondents report that their advocacy work results in exhaustion (50.7%), sadness (41.1%), and anxiousness (28.7%). More than a third (36.7%) said that grief makes it hard to maintain their work as advocates. A majority manage the demands of their advocacy work by practicing self-care (66.6%) and using coping strategies (62.5%). Advocates shared the specific practices and strategies they used. Less than half (42.5%) said they set boundaries between their advocacy work and their personal life. The final analysis of the survey data will be complete by the end of June 2021. Conclusions: The phrase, “Nothing about us, without us,” has guided the inclusion of patient and caregiver voices in the design of research, care delivery, research grant review, quality measurement, and other aspects of cancer care and cancer research. Yet organizations that ask for the mental and emotional labor of advocates, including patient organizations, researchers, health care professionals, government institutions, and pharmaceutical companies, should understand the costs to advocates and how to best support them. As one respondent said, “Perhaps organizations could set the stage for this work by openly validating the toll that cancer itself takes, and acknowledge that advocacy takes energy and commitment, which may not always be possible to sustain in the face of ongoing treatment or other life complications.”