Purpose/Objectives: To describe and understand the lived experience of family caregivers of patients with head and neck cancers (HNCs).
Research Approach: Phenomenology using van Manen’s human science approach.
Setting: Two hospital systems providing regional cancer care in upstate New York.
Participants: Nine family caregivers of patients with HNCs who had completed treatment.
Methodologic Approach: Qualitative analysis of semi-structured, conversational interviews about the lived experience of family caregivers.
Findings: Five major themes emerged related to the lived experiences of this sample of caregivers: (a) absorption of a large amount of information regarding diagnosis, (b) the importance of support from others, (c) adaptation to new routines and responsibilities, (d) a desire to be vigilant and protect a loved one from harm, and (e) feelings of fear, sympathy, and guilt.
Conclusions: Family caregivers of patients with HNCs play a fundamental role in the post-treatment phase of care, including meeting specific physical and psychosocial needs. Further investigation should explore the relationship between information needs and the experience of vigilance and fear.
Interpretation: Nurses must include caregivers in physical and psychosocial plans of care. Balancing and meeting information needs of caregivers to avoid undue emotional stress and recognizing their support needs are valuable components of care.