Perspectives on Self-Advocacy: Comparing Perceived Uses, Benefits, and Drawbacks Among Survivors and Providers

Abstract

Purpose/Objectives To describe and compare survivors’ and providers’ views of the uses of and perceived benefits and drawbacks of survivor self-advocacy. Design A cross-sectional, two-group, mixed-methods survey. Setting Survivors were recruited from local and national registries and advocacy organizations. Providers were recruited from the University of Pittsburgh Medical Center Cancer Center and a regional Oncology Nursing Society chapter. Sample 122 female cancer survivors and 39 providers involved in their direct care. Methods Quantitative survey data were summarized using descriptive statistics, including means and frequencies. Qualitative survey data were collected and analyzed using content analysis techniques, and main themes were counted and summarized. Main Research Variables Perceptions of the uses, benefits, and drawbacks of female cancer survivor self-advocacy. Findings Survivors and providers perceived similar but distinct uses of self-advocacy. Survivors and providers generally agreed on the potential benefits of self-advocacy but had different views of the potential drawbacks. Survivors were most concerned with finding and making sense of information, that their questions would not be answered, and having a worse relationship with their provider; providers were concerned with increases in clinic time and difficulties developing treatment plans. Conclusions Although survivors and providers recognized similar benefits to survivor self-advocacy, they had different views of the uses and drawbacks of female cancer survivor self-advocacy. Implications for Nursing Attempts to increase self-advocacy among female cancer survivors must address survivors’ and providers’ views and apprehensions about self-advocacy.

From symptom to cancer diagnosis: Perspectives of patients and family members in Alberta, Canada

“…While the relevance of cancer awareness has been previously acknowledged [32,33], the influence of shared cancer stories on the experiences of potential cancer patients with the diagnostic period has not been discussed in the literature, to the best of our knowledge. In the post-diagnosis literature, access to patients' real experiences with the disease has been reported important in providing general support to patients with cancer including the provision of information related to cancer and care process, and emotional help [34,35]. The potential role of having access to these experiences in not just helping individuals seek medical attention, but also dealing with information and emotional aspects of a prospective cancer diagnosis at the beginning of their journey requires further investigation.…”

“…Similar to what has been discussed in the context of treatment and survivorship [38], the healthcare system, even in the pre-diagnosis period, is increasingly complex, with a growing number and variety of specialties, care delivery sites, and diagnostic tests. In the face of navigating these complexities, and in the context of the psychological burdens of potentially facing cancer it is not surprising that many patients and families find it crucial to advocate for getting their care needs met [35]. In order to fully benefit from the care available to them and to enhance have improved experiences, patients and families spoke to the need to promote their own interests and actively try to avoid situations such as delayed appointments with a specialist or delayed access to appropriate testing.…”

“…As acknowledged by participants and supported by previous research, in order to be able to advocate for themselves, patients and family members need to be involved with individuals and groups that support their interests [35,36]. Unlike post-diagnosis, before diagnosis patients are not "cancer patients" yet and they and their family members do not hold membership in particular patient/family groups that can provide this support.…”

Workshop Report: Establishing Priority Research Areas to Improve the Physical Health and Well-Being of Autistic Adults and Older People

“…There are many perceived benefits of health care selfadvocacy, including a more patient-centered approach to care; improved patient-provider relationship, self-care, and health outcomes; more efficient health care delivery; and reduced health care costs. 13 However, health care selfadvocacy strategies and potential barriers to effective selfadvocacy for autistic people have not been explored yet.…”

Naturopathy Education, Social Cognitive Theory, PrecedeProceed Model, and Lesson Plan

“…In addition, one can educate others in a professional capacity by understanding positive and negative influencing factors in the lives of others. Theory can be applied in personal, individualized, meaningful ways to capture the attention of others and help raise selfadvocacy and self-efficacy levels for better health conditions and better health choices [17][18][19][20].…”