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Self-advocacy Behaviors and Needs in Women with Advanced Cancer: Assessment and Differences by Patient Characteristics

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Abstract

Background

Self-advocacy skills allow individuals with cancer to overcome challenges related to their health, care, and well-being. Understanding the self-advocacy behaviors and needs of individuals with cancer is critical to addressing the lack of evidence-based self-advocacy interventions. The aims of this study are to describe (1) self-advocacy behaviors and needs of women with advanced cancer and (2) associations between self-advocacy and sociodemographic, cancer, and patient-reported outcomes.

Methods

We analyzed cross-sectional data from a clinical trial among women within 3 months of a metastatic breast or stage III or IV gynecologic cancer diagnosis. Descriptive and correlational statistics and tests of group difference were calculated for measures of self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale), sociodemographic characteristics, quality of life (FACT-G), symptom burden (M.D. Anderson Symptom Inventory), and mood (Hospital Anxiety and Depression Scale).

Results

Participants (N = 78) reported self-advocacy behaviors including making decisions based on their priorities, asking questions to their healthcare providers, and comparing their experiences to others’ experiences. Self-advocacy needs focused on finding health information and talking with healthcare providers. Self-advocacy behaviors and needs did not differ by participants’ sociodemographic characteristics or mood. Higher self-advocacy behaviors were associated with higher quality of life (p ≤ .01) and lower symptom severity (p < .05) with a trend for cancer recurrence (p = .05).

Conclusions

Women with advanced cancer report engaging in self-advocacy behaviors and these are associated with higher quality of life and lower symptom burden. Future research should determine if self-advocacy behaviors and needs change over time and how patient characteristics impact self-advocacy behaviors and needs.

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Acknowledgements

Our team is immensely grateful to the participants in this research study along with their caregivers. We are also thankful to the staff and clinicians of UPMC Hillman Cancer Center at Magee-Women’s Cancer Program for supporting this study and championing our recruitment efforts and Dr. Susan Sereika for her statistical consultation.

Funding

This work was supported by the American Cancer Society Mentored Research Scholar Award (MSRG-18–051-51), the National Palliative Care Research Center Career Development Award, the University of Pittsburgh School of Nursing Center for Research & Education Pilot/Feasibility Study Program, and a Mid-Career Investigator Award in Patient-Oriented Research from the National Institute on Aging (K24 AG070285).

Author information

Authors and Affiliations

  1. School of Nursing, University of Pittsburgh, 3500 Victoria Street Suite 440, Pittsburgh, PA, 15261, USA

    Teresa Hagan Thomas & Catherine Bender

  2. Palliative Research Center (PaRC), University of Pittsburgh, Pittsburgh, PA, USA

    Teresa Hagan Thomas, Margaret Rosenzweig & Yael Schenker

  3. University of Pittsburgh Medical Center Magee-Womens Hospital, Pittsburgh, PA, USA

    Sarah Taylor & Margaret Rosenzweig

  4. School of Medicine, Division of General Internal Medicine, University of Pittsburgh, Pittsburgh, PA, USA

    Yael Schenker

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  1. Teresa Hagan Thomas
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Correspondence to Teresa Hagan Thomas.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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The authors declare no competing interests.

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Thomas, T.H., Taylor, S., Rosenzweig, M. et al. Self-advocacy Behaviors and Needs in Women with Advanced Cancer: Assessment and Differences by Patient Characteristics. Int.J. Behav. Med. 30, 211–220 (2023). https://doi.org/10.1007/s12529-022-10085-7

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