Episode 235: Self-Advocacy Skills for Patients

“Effective communication with healthcare providers, making informed decisions about their care, and gaining strength through connections to others” are the key aspects of patient self-advocacy, ONS member Teresa Thomas, PhD, RN, assistant professor at the University of Pittsburgh School of Nursing in Pennsylvania, told Jaime Weimer, MSN, RN, AGCNS-BC, AOCNS^®, oncology clinical specialist at ONS, in a conversation about how patients can self-advocate and how nurses can support them. You can earn free NCPD contact hours after listening to this episode and completing the evaluation linked below.

Music Credit: “Fireflies and Stardust” by Kevin MacLeod

Licensed under Creative Commons by Attribution 3.0

Earn 1.25 contact hours of nursing continuing professional development (NCPD) by listening to the full recording and completing an evaluation at myoutcomes.ons.org by November 25, 2024. The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of NCPD by the American Nurses Credentialing Center’s Commission on Accreditation.

Upon completion of this activity, participants will report an increase in knowledge related to patient self-advocacy.

Episode Notes

• Complete this evaluation for free NCPD.
• Oncology Nursing Podcast episodes:
  • Episode 183: How Oncology Nurses Find and Use Credible Patient Education Resources
  • Episode 197: Patient Learning Needs and Educational Assessments
• Thomas’s research articles:
  • “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
  • “I Pretty Much Followed the Law, and There Weren’t Any Decisions to Make”: A Qualitative Study of Self-Advocacy Experiences of Men With Cancer
  • A Conceptual Framework of Self-Advocacy in Women With Cancer
  • Symptom Burden and Self-Advocacy: Exploring the Relationship Among Female Cancer Survivors
  • Teaching Patients With Advanced Cancer to Self-Advocate: Development and Acceptability of the Strong Together™ Serious Game
  • Perspectives on Self-Advocacy: Comparing Perceived Uses, Benefits, and Drawbacks Among Survivors and Providers
  • Patient Education vs. Patient Experiences of Self-Advocacy: Changing the Discourse to Support Cancer Survivors
• Thomas’s clinical trial: Efficacy of a Self-Advocacy Serious Game Intervention
• Clinical Journal of Oncology Nursing article: Oncology Nurses’ Role in Promoting Patient Self-Advocacy
• Sigma Theta Tau International Honor Society of Nursing
• University of Wisconsin–Madison Center for Patient Partnerships
• American Society of Clinical Oncology
• National Coalition for Cancer Survivorship

To discuss the information in this episode with other oncology nurses, visit the ONS Communities.

To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org.

Highlights From Today’s Episode

“Effective communication with healthcare providers, making informed decisions about their care, and gaining strength through connections to others. That’s really how we define the key aspects of what patients do to advocate for themselves.” Timestamp (TS) 04:39

“At the end of the day, if a patient doesn’t feel like the care really is attuned to what is going on in their life and they don’t feel like they’re understood or appreciated, or their self-worth isn’t identified by their care team, then are we really patient-centered?” TS 06:32

“Really, patient self-advocacy is about making sure that your clinical care team knows what’s most important to you, even if the clinician doesn’t ask you, ‘What is it like at home?’ or ‘Tell me about your family,’ or ‘Tell me about what you’re looking forward to getting back to after treatment.’ Put that into the conversation where they understand exactly what your quality of life means to you and they understand what your main goals of treatment are.” TS 12:33

“When patients don’t have that voice to speak up, ask questions, and push a little bit if they don’t understand what’s happening, their care, adherence, health, and quality of life suffer because they don’t know enough to be engaged enough to ask for help.” TS 19:53

“We’re interested in patients’ quality of life, and we see that their emotional, social, physical, religious, and spiritual quality of life just goes down because they’re not themselves and they don’t quite know how to get back to themselves. And that’s the saddest part to see—them going through the physical rigor of going through cancer treatment is one thing, but feeling like you’re not yourself—we’ve had several people call it self-worth, the idea that I’m worth fighting for and I’m worth standing up to my providers and insisting that my pain finally gets a treatment that works.” TS 21:27

“Patient self-advocacy really centers around communication, and the informed decision making comes part and parcel with that because that’s the getting the information and gathering the resources to help communicate those ideas to your providers or whomever. And the connected strength also is about communication, too, since frequently family dynamics also require really good communication skills. So, if there was one thing that we would really want to train our patients in in terms of self-advocacy, it’s that effective communication aspect.” TS 31:42

“We know that cancer puts people at a disadvantage and makes them feel different from who they are. And what we’re trying to do is get them to feel like who they are is the same person they were, maybe slightly different from, who they were before cancer and that their cancer team and their loved ones know and support them for who they are.” TS 57:47

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