Healthcare professionals are called to provide patient-centered care in an environment where they listen to patients’ goals and desires and support patient autonomy. However, heeding that call requires patients’ participation to voice their needs and concerns, and some patients may be reluctant to speak up for themselves.
In an article in the June 2022 issue of the Clinical Journal of Oncology Nursing, Alsbrook et al. shared strategies for oncology nurses to teach patients self-advocacy skills and empower them to verbalize their values and priorities and actively engage in their care, from diagnosis through survivorship.
Patient Self-Advocacy Affects Cancer Outcomes
The myriad challenges patients experience throughout a cancer journey “simultaneously require patients to self-advocate while also making self-advocacy difficult,” Alsbrook et al. said. Patient barriers to self-advocacy include:
- Reacting emotionally to information about their diagnosis or treatment, rendering them unable to retain what they hear or read
- Feeling ill-equipped to effectively communicate with their cancer care team
- Lacking the skills needed to solve healthcare-related problems
Self-advocacy requires patients to identify and define their personal preferences and cultivate a relationship with the cancer care team to ensure that their care aligns with those preferences, Alsbrook et al. said. They explained that self-advocacy is particularly challenging—yet critical—for patients from underrepresented populations, “who frequently encounter additional roadblocks to optimal care, including access to high-quality cancer care and culturally sensitive health information and interacting with healthcare providers because of prior experiences of stigmatization and discrimination. These additional barriers create a pronounced need for nurses to advocate on behalf of patients and encourage patients to self-advocate.”
Alsbrook et al. cited results from a 2019 study that showed that patients with strong decision-making skills were better able to understand health information about their condition and make informed decisions about their care and those with strong communication skills were better able to voice their health concerns to their provider and had their issues addressed more promptly.
The How-Tos of Self-Advocacy
Alsbrook et al. identified three foundational self-advocacy skills for patients to practice and nurses to promote in their patients:
- Informed decision-making and ability to identify and apply personally relevant health information
- Effective communication that ensures providers understand and react to their health priorities
- Connected strength with others that balances giving and receiving social support
Nurses have opportunities to equip patients with those tools and empower them to self-advocate during all phases of care. For example, during the initial referral, talk to your patients about contacting their insurance provider so they understand their coverage for care, including second or third opinions, pathology reviews, and out-of-network institutions or providers. As patients prepare for their sequence of appointments, encourage them to build their support network and designate someone to accompany them to appointments. During the treatment phase, facilitate ongoing communication between patients and the care team for shared decision-making about treatment progression. At survivorship, ensure patients understand the recommendations for ongoing screening and follow-up and have a plan in place to promote adherence.
Through collaboration across their institution’s interprofessional team (i.e., medical oncology, oncology nursing, palliative care, and symptom management), Alsbrook et al. created a multistep process by which oncology nurses can strengthen patients’ self-advocacy and promote their health and well-being. They named the tool CABAP for clarify priorities, needs, and values; assess ability to self-advocate; build on self-advocacy strengths; assist patients who struggle to self-advocate; and promote ongoing self-advocacy (see sidebar).
For more information about promoting patient self-advocacy or using the CABAP tool, refer to the complete article by Alsbrook et al. in the June 2022 issue of the Clinical Journal of Oncology Nursing.