Adult patients diagnosed with head and neck cancer (HNC) experience significant emotional distress due to difficult and embarrassing side effects associated with radiation-oncology treatments and the high risk of having a poor prognosis. An estimated 600,000 new cases of HNC are diagnosed each year globally. Also, adults diagnosed with HNC constitute 3% to 5% of all diagnosed malignancies in the United States, with 59,340 patients (43,390 men and 15,950 women) being diagnosed annually (Cancer Net, 2015). Adult patients with HNC often experience significant weight loss (e.g., 30 to 50 pounds) during radiation oncology treatments and could benefit from tube feedings to support their nutritional status and to manage difficult oral symptoms (e.g., loss of taste, oral pain, swallowing difficulties). Family caregivers (FCs) play an essential role in the home care of patients with HNC, often requiring them to engage in daily caregiving responsibilities related to tube-feeding management. Although FCs are committed to helping their loved ones, the experience of family caregiving can be very stressful due to demanding caregiving responsibilities. FCs are required to manage challenging illness-related symptoms (e.g., oral symptoms, inability to speak, significant weight loss), make daily home-care decisions, identify potential emergency-care needs in the home setting, and provide emotional care and support to the HNC patient. Also, FCs face the additional challenge and stress of needing to learn and master skills necessary to prepare and manage tube feedings for the HNC patient. For health-care providers to better support family members in their home-caregiving role, research is needed that examines HNC patients and FCs’ perspectives and concerns about care needs during and following radiation treatments. To date, limited published evidence exists related to understanding the perspectives and concerns of both patients and their FCs about symptoms and home-care, tube-feeding management stressors.
Methods:
A descriptive, exploratory, retrospective qualitative design was used for this study.
A convenience sample of 20 participants (i.e., 10 HNC patients and 10 FCs) were recruited and enrolled in this study from the radiation oncology clinic at a major Midwest medical center in the US. HNC patients were eligible to take part in the study if they were: (a) aged 18 years or older; (b) able to read and speak English; (c) diagnosed with any type of HNC and had completed radiation oncology treatments within the previous 4 weeks; and (d) willing to provide written, informed consent and to participate in an interview. FCs were eligible to take part in the study if they were: (a) aged 18 years or older, (b) able to read and speak English, (c) identified by the patient as the primary individual providing their home care; and (d) willing to provide written, informed consent and participate in an interview. FCs were broadly defined for this study to include those individuals who provide HNC patients with unpaid help relative to their home care during and following radiation-oncology treatments.
The primary nurse at the radiation-oncology clinic who routinely provided oncology nursing care to HNC patients assisted with screening patients for eligibility and consenting eligible patients and their FCs. Interview data were collected via audio-taped interviews that were conducted either during face-to-face appointments in the radiation-oncology clinic or by telephone. The interview location was determined according to the participants’ preferences. Interviews were conducted by the principal investigator (PI). A structured interview guide developed by the PI was used to guide the participants’ scheduled interviews. Audio-taped interviews and demographic data were the primary data sources collected from HNC patients and their FCs. The Demographic Form included questions to collect the participants’ age, gender, race, education, marital status, and diagnosis and facilitated consent procedures and interview procedures. The Interview Guide included questions based on input from experienced radiation-oncology nurses that care for HNC patients and published HNC literature.
Collected interview data were conducted using open-ended questions to elicit the concerns and perspectives of HNC patients and FCs about symptoms and symptom-management strategies during and following radiation oncology treatments. Data were analyzed using Krippendorff’s method of semantic content-analysis. Sematic content-analysis included the following steps: first, each phrase of every response to interview questions were analyzed for meaning (i.e. symptoms and symptom-management strategies) and categorized according to those meanings; second, each categorized meaning was counted for frequency; third, labels were applied to categorized phrases; and fourth, a dictionary was developed, defining each factor. Two members of the study team jointly reviewed the de-identified transcript data and assigned categories to key phrases. A strength of this qualitative method is that the researchers categorized the data and counted the frequency of analyzed responses. Also, the members of the study team verified the accuracy of the analyzed data from the transcripts. The reliability estimates for each analyzed-data response ranged from 95% to100% across all the interviews.
Results:
A total of 20 adults participated in this study (i.e., 10 patients with HNC and 10 FCs). Demographic information for the enrolled HNC-patient participants included: (a) 60% (n=6) were male and 40% (n=4) were female; (b) 80% (n=8) were married; (c) 100% were Caucasian; (d) mean age was 61 years; and (e) 100% had completed 6 weeks of radiation- oncology treatments. Demographic information for the enrolled FCs included: (a) 77% (n=7) were female; (b) 80% (n=8) were married to the HNC patient; (c) 98% were Caucasian; and (d) mean age was 61 years. Following are the three most common coded meaning phrases and the total summary of the counted meaning phrases according to frequency. The three most common symptoms of concern reported by HNC patients included: (a) pain symptoms (i.e., throat/jaw, pain, mouth sores, ear pain, headache) which included 91 meaning phrases; (b) dry mouth and swallowing difficulties which included 71 meaning phrases; and (c) significant weight loss (e.g., 35-50 pound weight loss) which included 57 meaning phrases. The three most common home-care concerns reported by HCs included: (a) negative coping responses by the HNC patient (i.e., irritated, scared, demanding, moody, depressed, angry & short tempered, easily annoyed) which included 134 meaning phrases; (b) alterations in oral taste (e.g., no taste, little taste, food tasted like tin or metal at times) which included 41 meaning phrases; and (c) significant weight loss (i.e., 35-50 pounds during 6 weeks of radiation-oncology treatments) which included 37 meaning phrases. Also, 100% of the patients and FCs indicated the interview questions were appropriate and that the questions caused them no emotional distress.
Conclusion:
HNC patients and their FCs experience significant challenges during and following the patients’ radiation-oncology treatments. Also, oncology nurses are uniquely positioned to provide education and psychosocial support to patients with HNC and their FCs, assisting each to develop positive coping strategies during cancer treatments. Formulating an individualized plan of educational and psychosocial support for HNC patients and their FCs is also an example of the palliative care philosophy for oncology nurses to consider and integrate into the care of all oncology patients. Still, more evidence-based research is needed to equip oncology nurses to plan effective educational strategies to help FCs in their assistance with delivery of symptom-control measures and psychosocial support to patients with HNC related to difficult oral symptoms and fears regarding communication, especially with children in their family. The findings of this study provide evidence for the need to develop an educational and psychosocially focused intervention on tube-feeding management in the home by FCs of patients with HNC.