Background: Head and neck cancer is only 3 to 5% of all the cancers in the United States. The disease causes major changes in the appearance and functional ability of patients.
Purpose: To explore how caregivers communicate with head and neck cancer patients who have impaired communication abilities from the disease and from treatment.
Design: A qualitative grounded theory approach was used.
Methods: Thirty-nine caregivers of head and neck cancer patients were recruited from three east coast academic-affiliated hospitals with dedicated head and neck cancer units. Each person was interviewed, while being audiotaped for 1 1/2 hours. Open-ended questions were used to elicit comprehensive responses to the issues and concerns most important to care for these patients. The tapes were transcribed and inputted using Ethnograph v.5. The analysis of the interviews used grounded theory methods. Methods to ensure rigor and trustworthiness were incorporated into the design.
Findings: The results of the data collection revealed the majority of participants were women age 47 (average). For most, their beginning and highest education was the baccalaureate degree. The entire sample averaged 23 years in their profession and a more than 15.1 years caring for head and neck cancer patients. The sample represented caregivers from primarily the inpatient setting, but also included clinic, administrative, research and education. The results of the data analysis revealed engaging and distancing behaviors based the caregivers' level of comfort. The central topic was communication impairment. The core category was "Reading the Patient". The strategies used to identify problems, and meet the needs of the patients were "Giving Voice", "Being There", "Giving Control", "Saving Face", "Normalizing", "Relieving Pain", and "Giving Hope".
Conclusions: A hypothesis emerged from the analysis of the interviews. Successfully meeting the physical and psychosocial needs of head and neck cancer patients requires an intensive effort and the use of creative methods of communication which are primarily self-taught. Much more research needs to be done on low and high technology tools to assist caregivers of nonverbal patients to meet their needs, including understanding body image change from disfiguring facial surgery. The evidenced-based literature is still unavailable to provide direction to meet these complex patients' needs.
Clinical relevance: This study is a beginning effort to identify the complex needs of head and neck patients and suggest how to meet these needs. Lessons learned from this study might be applied to other patients with impaired communication ability.
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