Extending a nurse’s reach
Technology-enhanced holistic care programs allow for continuity of care outside the clinic for cancer survivors and their caregivers
By Norma Rabago
Two significant events in Lixin (Lee) Song’s life influenced her research in cancer survivorship. Both were equally personal.
Song, PhD, RN, FAAN, is vice dean of research and scholarship at UT Health San Antonio’s School of Nursing. Before pursuing her doctoral degree, Song’s work in obstetrics and gynecology medicine centered on “the happy, beginning part of life,” as she describes it. That led her to work with a University of Michigan community program helping uninsured and economically disadvantaged women receive free screenings for breast and cervical cancer.
“The Healthy Asian Americans Project was my first job in this country,” said Song, a Chinese national. “We would drive women to the clinic, serve as a translator and help them get a free screening to ensure they were healthy.”
She said the program was successful and attracted statewide attention. However, she noticed something about the women diagnosed with cancer.
“Even though it was a wonderful program, I realized the challenges women faced after the diagnosis. They would get the free screening, but with this population of women, they didn’t have insurance, didn’t speak English or drive,” she said. “Once they got the diagnosis, they were so scared. People needed more support after the diagnosis.”
Another motivation for Song’s interest in cancer survivorship: witnessing the devastating impact of lung cancer on a close friend.
“She was healthy and then suddenly diagnosed with end- stage lung cancer. She had some miserable complications after the diagnosis,” Song said. “I realized there are huge issues with family-provider communications and symptom management, how to talk to families about the impact of a cancer diagnosis and treatment and reducing the impacts of cancer symptoms.”
These experiences inspired Song to shift her focus to pursue doctoral training in cancer survivorship and supportive care. Drawing on her expertise in women’s health, Song’s research now centers on enhancing the health outcomes of cancer patients and their family caregivers by developing innovative, technology-enhanced holistic care programs that prioritize the well-being of both patients and their families.
Enhancing patient and family care
In a report from the American Cancer Society, close to 17 million Americans with a history of cancer had survived it in 2019. By 2030, that number will rise to 22.1 million. Yet, as the survivor count increases, the number of home health aides and physicians is decreasing, according to Song. The Association of American Medical Colleges predicts that, by 2036, there will be a shortage of up to 86,000 physicians in the U.S., which will leave the responsibility of cancer patients’ home care largely to their family members, Song said.
Employing a variety of technological tools, including fitness trackers and audio and radiofrequency sensing, Song aims to bridge the gap between hospital care and community-based support. Her goal is to “extend nurses’ helping hands” beyond clinical settings, enabling them to deliver patient and family-centered care that effectively addresses their needs during self-management and family care.
While Song’s postdoctoral training expanded the focus on supportive care for patients and caregivers managing many types of cancer, she began her research as a doctoral student with prostate cancer patients.
The standard of care for localized prostate cancer patients is active surveillance, prostatectomy and radiation therapy — with or without testosterone deprivation — all of which brings its own set of challenges. These include hot flashes, urinary incontinence and, for some patients, sexual dysfunction — effects patients were reluctant to discuss.
The amount of information a newly diagnosed patient has to deal with, from treatment options to the uncertain benefit of survival, can overwhelm a patient.
— Lixin Song, PhD, RN, FAAN
Improving health literacy
To help patients and spousal caregivers navigate these challenges, Song launched the Prostate Cancer Education and Resources for Couples (PERC) study, which served as a couple-centered symptom management program. Couples used online education and additional resources to learn how to manage the patient’s symptoms at their own pace.
Song expanded this effort to demonstrate the potential advantages of integrating e-health programs such as PERC into the electronic medical record, benefiting a wider range of patients and their families during this challenging phase.
She then initiated the Prostate Cancer Information, Communication and Support Program study. This was designed to provide accessible information on prostate cancer, treatment options and transition to home care, catering to individuals of all health-literacy levels and educational backgrounds.
“The amount of information a newly diagnosed patient has to deal with, from treatment options to the uncertain benefit of survival, can overwhelm a patient,” Song said.
Using credible sources of information, such as Medline Plus, and natural language-processing technology, Song used various text and video recordings to help those with different learning styles consume information derived from clinical guidelines and research evidence.
“We used recordings to help patients and their families remember their discussions with health professionals about treatment options and related information. Natural language processing was then used to generate hyperlinks for terminology that patients didn’t understand so they could learn more,” she said.
Achieving balance
Since joining the School of Nursing in 2022, Song has continued her research with cancer patients. She is actively adapting her intervention programs to better serve the local cancer population and their families, who are predominantly Hispanic.
The Center for Holistic Care of Cancer Patients and Families is currently under renovation within the school as a space to leverage this ongoing research. Discussing her vision for the project, Song expresses her
desire to assist caregivers in achieving a better balance between their own needs and those of their loved ones, emphasizing the importance of developing a program that seamlessly integrates with routine clinical care.
Reflecting on a poignant encounter during a previous study interview, Song recounted the experience of a participant discussing her husband’s surgery and subsequent doctor visits.
“[The wife] ended up having emergency surgery, and then she discharged herself to make sure she was available for her husband,” she said. “I was shocked, but not surprised. This is why we have to treat cancer survivorship as a family issue rather than an individual issue.”
