Ovarian Cancer Survivors' Experiences of Self-Advocacy: A Focus Group Study

Teresa L. Hagan

Heidi S. Donovan

advocacy, cancer survivorship, symptom management
ONF 2012, 40(2), 140-147. DOI: 10.1188/13.ONF.A12-A19

Purpose/Objectives: To explore ovarian cancer survivors' experiences of self-advocacy in symptom management.

Research Approach: Descriptive, qualitative.

Setting: A public café in an urban setting.

Participants: 13 ovarian cancer survivors aged 26-69 years with a mean age of 51.31.

Methodologic Approach: Five focus groups were formed. Focus group discussions were audio recorded and transcribed verbatim. The content was analyzed using the constant comparison method with axial coding. In-depth interviews with 5 of the 13 participants occurred via telephone one to five months after each focus group meeting to clarify and expand on identified themes. Preliminary findings were shared with all participants for validation.

Findings: Two major themes emerged from the data: (a) knowing who I am and keeping my psyche intact, and (b) knowing what I need and fighting for it. Exemplar quotations illustrate the diverse dimensions of self-advocacy. In addition, a working female-centric definition of self-advocacy was attained.

Conclusions: Women have varying experiences with cancer- and treatment-related symptoms, but share a common process for recognizing and meeting their needs. Self-advocacy was defined as a process of learning one's needs and priorities as a cancer survivor and negotiating with healthcare teams, social supports, and other survivors to meet these needs.

Interpretation: This phenomenologic process identified key dimensions and a preliminary definition of self-advocacy that nurses can recognize and support when patients seek and receive care consistent with their own needs and preferences.

Knowledge Translation: Self-advocacy among female cancer survivors is a process of recognizing one's needs and priorities and fighting for them within their cancer care and life. Practitioners can support female cancer survivors through the process of self-advocacy by providing them with skills and resources in making informed choices for themselves.

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