ANAHEIM, CALIFORNIA—After a patient receives a cancer diagnosis, their caregivers also undergo major life changes. The importance of these caregivers should be recognized by nurses in planning care for patients, especially for those with head and neck cancer. This research was presented at the Oncology Nursing Society (ONS) 39th Annual Congress.

“The needs of caregivers of patients with head and neck cancer haven’t really been studied. Many other types of cancers have been addressed, but there’s a paucity in the literature regarding caregivers of patients with this type of cancer,” Ann Fronczek, PhD, RN, of Binghamton University in New York, said during a presentation.

Fronczek and colleagues studied nine caregivers of patients with head and neck cancer from two Northeast cancer centers. The sample was composed of eight women and one man. Eight were spouses and one was an adult child. Only two of nine were employed.

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Conversational interviews were used to collect data, which were then analyzed to provide a descriptive, interpretive, and exhaustive description of the lived experience of these caregivers.

Throughout the study four themes emerged, according to Fronczek.

The first was information. All of the caregivers spoke about the process of gaining and needing information related to care, the diagnosis, and treatment. They also expressed compassion for nurses relaying the information.

The caregivers viewed information as power and talked about information related to specific care tasks, such as tube feeding and tracheostomy, as well as the difference between doing care tasks at home versus in the clinical setting.  In addition, they discussed the importance of information reinforcement and information as a confidence booster.

A second theme, which came as no surprise, was departure from daily routine. The caregivers described changes in roles and responsibilities, including performing tasks that the patient had usually performed, as well as curtailment of usual activities while in the caregiving role.

These findings, Fronczek said, support prior research results demonstrating the significant lifestyle change that caregivers undergo. With caregivers of patients with head and neck cancer, in particular, mealtime issues, such as new ways of preparing meals and tube feedings, were prominent.

The third theme addressed coordination of care. All caregivers spoke of receiving help and support from health care providers and from informal support systems, such as friends and family. However, at certain times, they felt inundated, frustrated, and “lost in the mix” with all the people trying to help. For instance, without a designated person in charge, the caregiver often was unsure of who to contact regarding certain aspects of the patient’s care. On the other hand, they also felt they would have been unable to care for the patient without help.

The fourth theme, which was a new finding, was vigilance. The caregivers all had a strong sense of wanting and needing to be careful. They felt the need to be vigilant to prevent future complications, physical harm, or pain to the patient. They also paid extra attention to their loved one’s physical status and often were waiting for complications or recurrence.

The fifth theme dealt with the major emotions experienced by these caregivers, such as fear, sympathy, and guilt. In particular, all were afraid of and worried about recurrence and felt sympathy for their loved ones when they were sick, in pain, or depressed. Guilt was mostly associated with meals, as some caregivers felt guilty about their loved ones being unable to enjoy certain meals that they were eating.

These study results indicate the importance of offering reputable sources to support caregivers in their roles, maintaining communication, offering assistance for care coordination, and recognizing the emotional needs of the caregiver. Further, health care providers should educate caregivers to ensure that they feel confident and prepared for their responsibilities.

Future research should go beyond descriptive, correlational studies. Moreover, this assessment of caregivers of patients with head and neck cancer needs to be replicated with a larger sample size, Fronczek said.

“We know cancer care is shifting away from the health care setting to the home, and we must identify and recognize the importance of family caregivers in providing care to persons with cancer,” she said.


Fronczek A. The lived experience of primary family caregivers for persons with head and neck cancer: A qualitative study. Presented at: Oncology Nursing Society (ONS) 39th Annual Congress; May 1-4, 2014; Anaheim, CA.