Evaluating Faith-Based Needs of Patients With Head and Neck Cancer (2022-2023)

Background

This year, 98,000 people will be diagnosed with head and neck cancer, adding to more than half a million survivors living in the United States. Characterized by significant morbidity and mortality, head and neck cancer places a physical, psychosocial and financial burden on a patient’s life and requires treatments that can leave patients permanently disfigured and disabled. 

Head and neck cancer patients require robust social support to counter the psychosocial burden of their diagnosis, treatment and survivorship. Although a large proportion (68.5%) of cancer patients already lean on prayer for their wellbeing, very little is known about the significance of faith-based communities for patients with head and neck cancer from both patient and clergy perspectives.

Understanding the relationship of head and neck cancer patients to their communities of faith can inform intentional practices of solidarity, such as social reintegration through specific educational materials for worship communities, spiritual-medical concordant care (shown to improve quality-of-life near death) and integration of religion/spirituality into distress management and survivorship care.

Project Description

This project team will address the care gaps of patients with head and neck cancer (HNC) by synthesizing available evidence across disability studies, theology, head and neck surgery, epidemiology and palliative care. The broader goal of this project is to propose a paradigm of care that walks alongside patients from diagnosis through and beyond treatment, offering symptom management and seeking patient flourishing. 

Team members will provide a faith-based needs assessment of HNC patients and survivors through a mixed-methods approach. The project team will analyze the data from HNC patient surveys to describe the association between symptom burden and faith-based needs, based on sociodemographic and disease factors shown to be associated with quality of life. Team members will also interview selected patients and analyze the interview outcomes using a content analysis approach to characterize the faith-based needs and support systems of patients with HNC.

The team will then conduct interviews with religious leaders in the Triangle to understand existing community resources for HNC burden; develop internal audits (checklists to identify gaps in care services) for religious congregations; and inform educational materials with inclusive, embodied worship practices. To understand the broader impact of facial disfigurement, religious leaders will be interviewed not only about HNC, but also other face-related disabilities (e.g., sudden loss of voice or hearing, trauma, congenital deformities). Team members will analyze the data to describe barriers to care/worship that religious leaders observe for patients with HNC and forms of cancer support currently offered by the congregation.

Anticipated Outputs

Publication and presentation with American Head & Neck Society; data for further research in palliative care optimization; presentation at the Conference on Medicine and Religion; HNC-specific educational materials for congregations; storytelling narratives displayed in clinics and disability-artwork in congregations

Student Opportunities

Ideally, this project team will be comprised of 2 graduate and 3 undergraduate students. Prospective team members will likely be from health-related, humanities, social science or divinity programs. All students are encouraged to apply regardless of religious background. At least one member of the team will have a background in qualitative research to contribute to the qualitative component with attention to the lived experience of patients. 

Students will contribute to every project stage, from research design to publications to creative exploration and application to healthcare. Students will be divided into two subteams – patient-facing (3 students) and clergy-facing (2 students) – based on the skillset and interest. Within each group, students will collaborate on literature review, survey/interview development, recruitment, data collection and analysis. Subteams will have weekly meetings to discuss tasks, feedback and challenges. In Fall 2022, the team will meet on Wednesdays from 1:00-3:00 p.m. The full team will also meet monthly to provide progress updates and synthesize data. The interdisciplinary team structure will enable students to develop research and self- and group-management skills. 

Graduate students will have the unique opportunity to lead patient recruitment and surveys/interviews through collaboration with the Duke Social Science Research Institute. Undergraduate students will conduct quantitative surveys (patient-facing) and qualitative interviews (clergy-facing). In addition to the team leaders, the clergy-facing sub-group will work closely with Dr. Sarah Jean Barton and Ms. Kimberly Monroe. Selected students will have the opportunity to travel to the Conference on Medicine and Religion and American Head and Neck Society Meeting.

Monica Bodd will serve as project manager.

Timing

Summer 2022–Summer 2023

  • Summer 2022 (optional): Start IRB training; conduct literature review of existing cancer-related religious studies; develop interview guide and survey format; submit IRB application
  • Fall 2022: Complete recruitment and data collection of patients and clergy; begin concurrent analysis and discussion with collaborators
  • Spring 2023: Continue data analysis and discussion with team leaders and referred experts; prepare abstract and manuscripts for presentation
  • Summer 2023 (optional): Continue publishing findings; develop the project’s future goals

Crediting

Academic credit available for fall and spring semesters; summer funding available

 

Image: Saving Faces Art Project by Mark Gilbert, Commissioned by surgeon Iain Hutchinson as part of the Facial Surgery Research Foundation

Saving Faces Art Project by Mark Gilbert.

Team Leaders

  • Monica Bodd, School of Medicine and Divinity School–MTS/MD Student
  • Walter Lee, School of Medicine-Head and Neck Surgery and Communication Sciences
  • Nosayaba Osazuwa-Peters, School of Medicine-Head and Neck Surgery and Communication Sciences

/graduate Team Members

  • Leslie Ballew, Theology, Medicine and Culture, Divinity-MDV
  • Madeline Garcia, Occupational Therapy-Doctorate

/undergraduate Team Members

  • Alexandra Bennion, Biology (BS)
  • Maia Kotelanski
  • Jeehye Lee, Biology (BS)
  • Colton Ortiz, Cultural Anthropology (AB)

/yfaculty/staff Team Members

  • Sarah Barton, Divinity School|School of Medicine-Orthopaedic Surgery
  • Buddy Marterre, Wake Forest University School of Medicine
  • Kimberly Monroe, Office of Durham and Community Affairs
  • Daniel Rocke, School of Medicine-Head and Neck Surgery and Communication Sciences