“I was never one of those people who just jumped right in for me”: patient perspectives on self-advocacy training for women with advanced cancer
Open accessPublished version of a preprint
Abstract
Purpose Patients with advanced cancer experience many complicated situations that can make self-advocacy (defined as the ability speak up for yourself in the face of a challenge) difficult. Few self-advocacy interventions exist, and most are atheoretical with minimal patient engagement. The purpose of this study is to describe participant perspectives of a novel, self-advocacy serious game intervention called Strong Together.Methods This was a qualitative cross-sectional descriptive study among women receiving cancer care at an academic cancer center within 3 months of an advanced gynecologic or breast cancer diagnosis. Participants randomized to receive the intervention completed one-on-one semi-structured interviews 3-months post Strong Together and had the option to share voice journals about their experiences. Inductive qualitative approaches were used to descriptively analyze transcripts and voice journals. Descriptive content analysis approaches were used to group similar codes together into themes summarizing participants' experiences engaging with the Strong Together intervention.Results Participants (N = 40) reported that the Strong Together intervention was acceptable, noting that it was realistic and reflective of their personal experiences. Overarching themes included seeing myself in most scenarios and wanting more content; giving me the go ahead to expect more; offering ideas for how to stand up for myself; reinforcing what I am already doing; and reminding me of what I have. Participants suggested adding additional content including diverse characters.Conclusion This study demonstrated that women with advanced cancer were receptive to a self-advocacy skills-building intervention. Future research should explore the mechanisms linking serious games to learning and health outcomes.
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Advocating is a strategy for patients and families to engage in the care experience meaningfully, enabling informed decisions, effective communication with providers, and strong connections with others.
“Advocating is a strategy for patients and families to engage in the care experience meaningfully. By doing so, they can make informed decisions, communicate effectively with providers, and build strong connections with others [46].”
From The hospital-to-home care transition experience of home care clients: an exploratory study using patient journey mapping (2023) · cites this paper as [46]
The Background says patients meaningfully engage in care through self-advocacy by making informed decisions, communicating with providers, and building strength through connections to others. It does not extend that account to families advocating or gaining those benefits; the Methods mentions family members only in scenarios about balancing patients’ priorities with their needs. No page numbers are available in our copy. (LLM, conf=0.87)
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- Authors
- Thomas, T. H., Murray, P. J., Rosenzweig, M., Taylor, S., Brufsky, A., Bender, C., Larkin, M., & Schenker, Y.
- Affiliations
- University of Pittsburgh (US)
- Corresponding author
- Thomas, Teresa Hagan
- ORCID
- Venue
- Supportive Care in Cancer
- Published
- 2023-01
- Volume
- 31
- Issue
- 1
- Pages
- 96-96
- ISSN
- 0941-4355 (ISSN-L)
- 1433-7339
- PMC
- PMC9811054
- OpenAlex
- W4313544789
- Cited by
- 12
- References
- 31
- Citations by year
- 2026: 3 · 2025: 6 · 2024: 2 · 2023: 1
- FWCI
- 1.46
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Supportive Care in Cancer (publishedVersion)
- Research Square (acceptedVersion, cc-by)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- American Cancer Society (MSRG-18-051-51)
- National Palliative Care Research Center (Career Development Award)
- National Institute on Aging (K24 AG070285)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Psychology › Developmental and Educational Psychology › Educational Games and Gamification
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- self-advocacy, serious games, advanced cancer, women with cancer, gynecologic cancer, breast cancer, patient perspectives, patient engagement, treatment acceptability
- MeSH terms
- Breast Neoplasms, Cross-Sectional Studies, Female, Humans, Patients
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