Implementing Communication Research for Healthcare Providers, Patients, and Caregivers
Last summer, we presented our work at the National Institute of Nursing Research (NINR) Workshop on the Spectrum of Caregiving and Palliative Care in Rare Diseases and at the Institute of Medicine (IOM) Roundtable on Health Literacy and Palliative Care. Both meetings are important in policy development for healthcare. The IOM and NINR influence the way in which grant monies are allocated, the way health issues are prioritized by key organizations, the way media disseminate research content, and ultimately, the way you experience healthcare in America. We shared our translational research that emphasized the utility of communication theories and methods, allowing other disciplines to learn about what we do and inviting new partners to the research table.
To encourage the application of communication research, translational efforts need to extend beyond the research domain and into implementation. Implementation reaches the very people who complete surveys, share interviews, and offer permission to be observed. Implementation is the delivery of the tools we develop and the actual outreach to providers and their patients/families to change and improve healthcare outcomes. In our own work in palliative care, this is a three-step process that consists of (a) conducting communication research with providers, patients, and family caregivers(research); (b) taking new knowledge from research and creating a curriculum to teach the new knowledge(translation); and (c) developing resources and tools that emerge from curriculum for use in the very context we study(implementation).
Over the past decade, our research has resulted in the creation of the COMFORTTM SM Communication Curriculum. The acronym COMFORTTM SM represents the seven basic principles of palliative care communication. The curriculum is based on empirical research in oncology and palliative care, from observations and interviews with interprofessional healthcare team members, cancer patients, and family caregivers. Each module of the curriculum is grounded in communication theory and is the first theoretically grounded curriculum developed for teaching providers how to practice patient-centered communication.
In the case of the COMFORTTM SM Communication Curriculum, translation involves moving from an evidence-based body of research into a formal curriculum. With funding from the Archstone Foundation, we formally developed this curriculum and offered training for palliative care teams in the state of California. In a two-day conference titled COMFORTTM SMCommunication for Palliative Care Teams in January 2015, competitively selected teams from 30 clinical sites (60 participants) previewed the curriculum. As part of the training, participants were provided a communication toolkit, video vignettes, and communication skill-building sessions. Funded through a cancer education training grant by the National Cancer Institute, we have created a new version of the curriculum specifically for oncology nurses and, over the next four years, are teaching four national courses titled COMFORTTM SM Communication for Oncology Nurse. All of our training courses require attendees to provide six- and 12-month feedback on application of the curriculum, thus providing more research on the utility, application, and impact of the training.
As we have developed the curriculum for our courses, our research process has taken us into the world of implementation—administering and testing our communication resources/tools in context. We built a free iOS smartphone application (APP) called Health Communication. It is designed to provide clinicians with quick and ready access to theory-driven, evidence-based communication tools that are useful during difficult conversations with critically ill or dying patients and their families. Now in its fourth update, the APP includes the Plain Language Planner for Palliative Care© (PLP), in both English and Spanish, and translates common medications and symptoms at the 6th grade level. Our PLP content is also available on the Palliative Care Communication Institute website and in hard copy pocket card format for easy clinical use.
The APP also includes a communication toolkit, resources to communicate in difficult scenarios, and a “Try It” feature for the user to experiment with different communication strategies. The APP privileges patient and caregiver needs and aids the provider in communicating with compassion, clarity, and cultural sensitivity.
Also emerging as a resource from the COMFORTTM SM Communication Curriculum is A Communication Guide for Caregivers. We created the Guide specifically for oncology caregivers facing a spectrum of communication challenges in the illness trajectory. It, too, is written in plain language and at a 6th grade reading level. This resource is now the subject of upcoming research regarding its role in decision-making and quality of life for caregivers.
Looking back now at the journey from research to translation to implementation, the steps seem much clearer than when we were in the throes of trying to identify what we were doing and how the branches of our work should progress. We now see and try to share with others in health communication that there is a pathway for research that can affect healthcare stakeholders and systems in powerful ways. Our journey has most certainly included failed efforts that were our best teachers. We learned from hard knocks that although we could speak the jargon of the communication discipline, we were missing the lexicon of our intended audience. The tools we were developing had to be written for patients and caregivers of all health literacy levels. COMFORTTM SM Communication has been a vehicle to move our agenda forward. It serves as a multifaceted program that includes continuing education credits for healthcare professionals, a website with resources, train-the-trainer courses, and regularly updated curricula and tools reflecting new research.
The tools mentioned here are part of the Palliative Care Communication Institute (PCC Institute) website housed at City of Hope, a website that offers the COMFORTTM SM Communication Curriculum, updates on research, training opportunities, and resources.