Spiritual Care Gaps in Head and Neck Cancer

Project Team

Students with their poster.

Team profile by Maia Kotelanski, Rose Lee, Madeline Garcia and Colton Reese Ortiz

98,000 people in the United States will be diagnosed with head and neck cancer (HNC) this year, leading to a growing body of over 500,000 HNC survivors. Invasive surgery for patients with head and neck cancer can lead to facial disfigurement and speech problems post-treatment. 

75% of HNC survivors report bodily concerns and one third suffer from depression, both of which can be socially isolating. Very little is known about the significance of faith-based communities for patients and survivors of HNC. 

This project team’s research aims were to better identify the psychosocial effects of head and neck cancer, the implications of spiritual care conversations and the role clergy can have in meeting the faith-based needs of head and neck cancer patients and survivors. Our team was composed of a patient-facing side and clergy-facing side, with hopes of identifying needs and understanding how communities and individuals can be better supported in navigating head and neck cancer through faith-based approaches. 

Each subteam had one graduate student leader and a number of undergraduates working together. The entire team was led by a medical student, a head and neck surgeon and a head and neck cancer researcher, with support from the Duke Office of Durham and Community Affairs. 

The patient-facing subteam conducted a literature review focusing on cancer care needs, psychosocial effects of head and neck cancer and spirituality in head and neck cancer to develop a survey directed at characterizing the faith-based needs of head and neck cancer patients. The clergy-facing subteam conducted a literature review that identified central themes of healthcare privacy as a barrier to connection, clergy and compassion burnout and the social effects of lacking societal understanding of HNC. 

So far, the patient-facing subteam has screened 135 patients, obtained 41 verbal consents and 11 e-consents, and has had eight patients complete the patient survey. The clergy-facing subteam was able to conduct and transcribe five interviews with local clergy members from various congregations.

Some challenges for the patient-facing side included receiving IRB approval and recruiting patients. Due to the strict regulations surrounding IRB, it took a longer time than expected to begin recruitment. However, in the meantime, the patient-facing team conducted a literature review and edited patient surveys and interview guides. This helped set a strong foundation for future patient recruitment and interviews. 

In addition, during recruitment, it was initially difficult to get in contact with patients and receive their consent to participate. After we switched to a local North Carolina phone number and editing the phone script to be more colloquial, more patients answered the phone and agreed to participate. 

Similarly, the clergy-facing subteam struggled to balance the validity of their recruitment pool with the availability of clergy members. Through the interviews that were conducted and conversations inside and outside of the team, the clergy-facing team has identified clergy burnout and overwork as a major factor in low recruitment. The team aims to mitigate this issue in the future by providing compensation and expanding the pool of potential interviewees. 

Assessing Faith-Based Needs in Patients with Head and Neck Cancer (HNC)

Poster by Maia Kotelanski, Rose Lee, Leslie Ballew, Madeline Garcia, Alexandra Bennion, Colton Ortiz, Nosayaba Osazuwa Peters, Walter Lee and Monica Bodd

Research poster.