Source: MedScape News Today
Abstract and Introduction
Purpose/Objectives: To describe coping among patients with laryngeal and oropharyngeal cancer during definitive radiation with or without chemotherapy.
Research Approach: Qualitative content analysis conducted within a larger study.
Setting: Two radiation oncology outpatient clinics in Baltimore, MD.
Participants: 21 patients with oropharyngeal or laryngeal cancer.
Methodologic Approach: Interviews with open-ended questions were conducted during treatment. Questions covered topics such as coping during treatment, treatment-related issues, and resources.
Main Research Variables: Coping, treatment, and coping resources.
Findings: Patients’ self-assessments suggested they were coping or that coping was rough or upsetting. Issues that required coping varied over four time points. Physical side effects were problematic during and one month after treatment completion. Patients used coping to manage the uncertainties of physical and psychological aspects of their experience. Family and friend support was a common coping strategy used by patients, with the intensity of side effects corresponding with the support provided across time points.
Conclusions: Findings confirm previous research, but also provide new information about ways in which patients with head and neck cancer cope with their illness experience. Emergent themes provide insight into patients’ feelings, issues, and assistance received with coping.
Interpretation: Patients with head and neck cancer need education on the amount and severity of side effects and should be appraised of potential difficulties with scheduling, driving, and other logistic issues. Patients also should be informed of helpful types of support and coping strategies. Additional research is needed to expand the findings related to patients’ coping with treatment and to explore the experiences of family and friends who provide social support.
Head and neck cancer (HNC) accounts for 3% of all cancers in the United States and is twice as common in men compared to women (National Cancer Insitute [NCI], 2011). The incidence in the United States was estimated to be 52,000 new cases in 2011 (NCI, 2011). Treatment for HNC is multimodal, including surgery, radiation, and often chemotherapy. Patients’ illness experiences involve physical symptoms, side effects from treatment, symptom distress, and psychological distress (Archer, Hutchison, & Korszun, 2008; Haman, 2008). Patients also experience uncertainty about the effectiveness of an unfamiliar treatment, their ability to manage daily living, and long-term effects of the disease and treatment (Rose & Yates, 2001). Because of uncertainty, each patient perceives illness, cognitively appraises his or her situation, and copes with illness differently (Mishel, 1988).
Patients with HNC experience an array of physical symptoms resulting from their cancer and its treatment (Chandu, Smith, & Rogers, 2006). Symptoms related to side effects of radiation include dysphagia, xerostomia, pain, fatigue, altered taste, mucositis, skin changes, and weight loss (Olmi et al., 2003; Khoda et al., 2005). Symptoms related to side effects of chemotherapy include difficulty swallowing, anemia, nausea, neutropenia, diarrhea, and mucositis (Lambertz, Robenstein, Mueller-Funaiole, Cummings, & Knapp, 2010; Schrijvers, Van Herpen, & Kerger, 2004). Patients with HNC may experience several of those symptoms and side effects at any time during their treatment.
Symptom distress is defined as the degree or amount of physical or mental upset, anguish, or suffering experienced from specific symptoms (Rhodes & Watson, 1987). Few researchers have examined symptom distress among patients with HNC. Lai et al. (2003) reported that patients undergoing treatment had a moderate amount of symptom distress related to dry mouth, fatigue, loss of appetite, insomnia, and pain. Symptom distress also changes over time in response to the perceived difficulties of patients as a result of the physical and psychological demands of treatment (Haisfield-Wolfe et al., 2011). Symptom distress among patients with HNC can influence coping with symptoms and psychological distress (Elani & Allison, 2010).
Psychological distress, including the presence of anxiety, depression, and depressive symptoms, is present during the course of HNC treatment. Patients experience high levels of anxiety, particularly at diagnosis and pretreatment (Horney et al., 2011). Researchers have found depression and depressive symptoms prior to treatment (Baile, Gibertini, Scott, & Endicott, 1992; Davies, Davies, & Delpo, 1986), during treatment (Haisfield-Wolfe, McGuire, Soeken, Geiger-Brown, &, De Forge, 2009; Kugaya et al., 2000), at the completion of radiation treatment (Katz, Irish, Devins, & Gullane, 2003; Sehlen et al., 2003), and three months after diagnosis (Hammerlid, Silander, Hornestam, & Sullivan, 2001).
Uncertainty in illness is defined as an inability to determine the meaning of events, assign values to objects and events, and accurately predict outcomes (Mishel, 1988). Uncertainty and symptoms have been shown to interfere with adaptation to cancer (Bailey, Mishel, Belyea, Stewart, & Moher, 2004), and high levels of uncertainty interfere with coping (Mishel, 1984). In studies of patients with cancer, increased uncertainty has been related to depression (Bailey et al., 2004), poorer coping with stress (Badger, Braden, & Mishel, 2001), and inadequate psychological adjustment (Christman, 1990). However, few research studies have addressed coping in the context of uncertainty among patients with HNC.
Coping is defined as a “cognitive and behavioral effort to manage specific external or internal demands and conflicts that are appraised as taxing or exceeding the resources of a person” (Lazarus & Folkman, 1984, p. 112). Cognitive appraisal of taxing situations is a prerequisite for initiation of coping attempts that are aimed at adapting to the new reality of living with HNC. Variables associated with adaptation include those of a physical, psychological, and social nature. Research that investigates coping among patients with HNC, focusing on areas patients cope with and what coping strategies they use, is limited. Chaturvedi, Mbulaiteye, and Engels (2008) found that major concerns faced by patients with HNC were worries about their current illness and future (e.g., physical evaluation, communication, inability to perform usual tasks, finances, being upset).
During treatment, patients with HNC cope with symptoms and worries such as weight loss, dry and sore mouth, difficulty masticating and swallowing food, altered perception of taste, and missing meals (Lees, 1999). Patients receiving radiotherapy reported experiencing insufficient information and lack of time to ask questions (Larsson, Hedlin, & Athlin, 2007). Patients also have described coping with “disruption of their daily lives,” “waiting in suspense,” and “being left to their own devices” (Larsson et al., 2007, p. 324). Other areas identified as requiring coping after treatment were feelings of being self-diminished, underreported suffering, and loss of meaning in life (Moore, Chamberlain, & Khuri, 2004). Six to 12 months after treatment, patients were faced with physical changes, concerns about cancer, difficulties with work, interpersonal relationships, and social functioning (Semple, Dunwoody, Kernohan, McCaughan, & Sullivan, 2008).
Coping strategies used by patients with HNC vary. List et al. (2002) found that at pretreatment, patients with HNC primarily used social support. Recently treated patients with HNC used a greater number of coping strategies and commonly employed emotional ventilation, disengagement, denial, and suppression of competing activities (Sherman & Simonton, 2010). Elani and Allison (2010) found an association between levels of patients’ anxiety and depression and the types of coping strategies used. Those with higher levels used more self-blame, wishful thinking, and avoidance strategies. Thambyrajah, Herod, Altman, and Llewellyn (2010) examined benefit finding after HNC treatment and found that major themes were change in life priorities, greater closeness to family and friends, a greater awareness of self, and spirituality. Those few studies demonstrate that although patients with HNC are challenged with numerous physical, psychological, and social effects, their coping remains poorly understood.
Patients cope with symptoms and side effects, worry about disruption in their lives, and often are left to their own devices (Larsson et al., 2007; Lees, 1999). Patients also experience loss of meaning in life, underreport their pain, feel (or are) disfigured, and have changes in interpersonal relationships (Moore et al., 2004). They verbalize that they feel concerned about the uncertainties of cancer recurrence and daily living (Semple et al., 2008). Despite that large burden, few intervention studies have been designed to assist patients with HNC in coping. Learning more about how patients with HNC cope during each phase of their cancer experience will provide clarity in understanding the coping needs of and strategies used by this population.
The purpose of this study was to describe coping in the context of uncertainty among patients with laryngeal and oropharyngeal cancer during definitive radiotherapy with or without chemotherapy over four time points. This work was conducted as a substudy within a larger, longitudinal descriptive study (Haisfield-Wolfe et al., 2009) examining symptoms, symptom distress, depressive symptoms, and uncertainty.
Mishel’s (1988) Uncertainty in Illness Theory (UIT) guided the study research. UIT centers on an ill individual’s appraisal and coping with uncertainty. UIT views coping as a context-specific behavior in which an individual appraises and manages uncertain objects or events as a threat or as a positive challenge (Lazarus, 1967; Lazarus & Launier, 1978; Mishel, 1988). This substudy focuses on coping related to uncertainty. In designing this substudy, the researchers developed three open-ended interview questions to illicit information regarding how patients with HNC cope with treatment. Exploring coping within the context of uncertainty will help increase understanding of coping issues and strategies, with the ultimate aim of developing interventions that will improve practice.
Design, Setting, and Sample
The current study is a descriptive, qualitative content analysis of open-ended questions that patients answered about their coping during treatment. Patients were recruited from radiation oncology clinics at two cancer centers in Baltimore, MD. The sample consisted of 21 patients who met the following inclusion criteria: being aged 18 years or older, newly diagnosed with oropharyngeal or laryngeal cancer, and undergoing definitive radiation with or without chemotherapy. Patients were interviewed at four time points: week 1 (treatment initiation), week 5 (midpoint in treatment), week 9 (end of treatment), and week 12 (one-month visit with radiation oncologist after completion of radiation).
Procedures and Analysis
Approval was obtained from the human subjects institutional review boards at the University of Maryland Medical Center and Johns Hopkins Medical Institutions. Procedures were similar at each site, with physicians and nurses screening new patients for eligibility and identifying those interested in participating. Those individuals then were contacted by the researchers. Of 24 patients meeting inclusion criteria, 21 signed informed consent and provided demographic information. Patients who declined participation stated they were overwhelmed by their diagnosis and schedule. During a structured interview that was conducted as part of the larger study, researchers used the following prompts at each time point.
- Tell me about how you are coping during treatment.
- Tell me about any issues related to your treatment.
- What resources are helping you to cope?
Depending on patients’ responses, the researchers occasionally asked additional questions for clarification. Patients were given as much time as needed to answer the questions, with the average interview lasting 15–30 minutes. Participants’ responses were recorded manually.
The recorded responses were categorized by time point and entered into a Microsoft® Word® document. Using a content analysis approach, the first author examined the text. A qualitative method was used to sort words and sentences having aspects related to each other by content and context into content areas (Graneheim & Lundman, 2004; Krippendorff, 2004). After rereading the whole interview again, content areas were labeled. The individual content areas were tabulated to identify the frequency with which they occurred (Krippendorff, 2004) and then discussed by the researcher and two HNC content area experts. When the researcher or the content experts had different perspectives, discussion occurred until consensus was reached. The categories and their content then were formulated into themes. Finally, the data were reviewed and judged by an HNC survivor who agreed that the themes and content reflected the experience of patients with HNC coping during and after treatment.
Study integrity was established using the aspects of trustworthiness: credibility, dependability, transferability, and confirmability (Lincoln & Guba, 1985). Credibility was demonstrated in the unique responses of patients with HNC to the interview questions, which focused on specific areas of coping with treatment. Dependability was demonstrated not only in the agreement among HNC experts and researchers regarding the results, but also by similar research findings in the literature that are reported in the Discussion section of this article. Transferability was judged by HNC content experts and an HNC survivor who reviewed the findings and agreed that they were transferable to other HNC contexts and settings. Finally, confirmability was maintained when a code book was developed and an audit trail of coding and content area decisions were recorded by the researchers to help ensure rigor and provide guidance for future research.
Demographic and Clinical Characteristics
Sample characteristics are presented in Table 1 . Most patients were Caucasian, married, and men. The mean age was 59.2 years (SD = 9.2), and most patients had 12 years of education. Five patients reported a prior mental health disorder, and one patient was taking antidepressant medications. All patients were receiving radiation treatment at the time of the study, and 15 patients were receiving concomitant chemotherapy.
Coping During Treatment: See Table 2 for the number of participants reporting each theme across time points. Exemplars for the three most prevalent themes that emerged related to coping are presented in Table 3 . At all four time points, the most prevalent theme was the patient’s self-perception of managing to cope. Responses revealed degrees of coping, for example, “quite well,” “as expected,” or “fair.” More than half of the patients reported they were coping with their illness and treatment. Although patients self-perceived they were coping across time points, they also identified physical and psychological issues that challenged their coping abilities. The second most prevalent theme was upsetting or rough experience, which increased over time. At the beginning of treatment, patients reported areas of difficulty with coping as stress related to disease and treatment. At midtreatment, patients reported bothersome side effects. At end of treatment, patients reported coping with aspects of treatment related to managing stressful events or severe side effects. One month after treatment, patients reported being upset about not feeling better by this point in time.
The third most prevalent theme was anticipation, which was highest at baseline and end of treatment (week 9). Patients were anticipating the end of both treatment and side effects. Responses that demonstrated anticipation included “I’m counting the days,” or “I can see the end of the tunnel.” Patients also reported using coping strategies (e.g., blogging, walking, accepting assistance from family or friends, acceptance of their illness, denial).
Issues Related to Treatment: Selected exemplars for the three most prevalent themes related to issues during treatment are presented in Table 4 . The most prevalent theme throughout the four time points was having physical side effects related to treatment, which increased at midtreatment and declined at end of treatment and one month after treatment. Patients reported 16 different side effects: weight loss, taste changes, sore throat, skin sores, pain, nausea, hiccoughs, hearing loss, fatigue, excess mucous, dry throat, difficulty talking, difficulty eating or swallowing, anorexia, and change in body image. One month after completion of treatment, patients still reported persistent symptoms (e.g, pain, difficulty swallowing, fatigue). Of note, the second most prevalent theme (six patients at weeks 5 and 9) was minimal or no issues, with the frequency declining over time. The third most prevalent theme was fear, anxiety, or worrying, which was present at all time points, but was most prevalent at baseline and one month after treatment. Exemplars emphasized the uncertainty associated with completion of treatment, for example, “fear of recurrence of cancer” and “don’t know what to expect.”
Assistance With Coping: Illustrative exemplars for the three most prevalent themes related to assistance are shown in Table 5 . The most prevalent theme was family support, with the majority of patients reporting family as the main source of support received over the four time points. The second most prevalent theme was friend support, which also persisted over four time points. Many patients told stories about how their friends and family had supported them. As the number of side effects increased at midtreatment and end of treatment, the number of individuals supporting the patient increased. At end of treatment (week 9), patients reported the importance of hospital personnel. One month after treatment, the amount of family support decreased and the interactions with friends increased. The third most prevalent theme was mental outlook, which increased over time. Coping strategies reported included Web support, keeping a normal schedule, weekly massage, walking, keeping busy, working at home, journaling, pets, and going to the mall for a few hours to take a “minivacation.”
The results indicate that patients used coping to manage the uncertainties of physical and psychological aspects of their experience. Emergent themes provided insight into patients’ issues and feelings, as well as the support they received during treatment and afterward. Common themes uncovered for each question will be discussed briefly.
Coping at Each Treatment Time Point
Coping is defined as managing internal and external demands of illness (Lazarus & Folkman, 1984). Although the majority of patients perceived that they were coping, they reported different degrees of individual coping (e.g., “excellent,” “fair”) and noted issues that influenced how they coped, such as symptoms, fear, or anxiety. Therefore, most individuals appeared to be coping with the internal and external demands of treatment, with the exception of those who found their situation to be rough or upsetting. Interestingly, patients who reported that their coping was rough or upsetting were not the same grouping of patients across all time points. Patients reported better coping or more difficulty coping depending on the time point; for example, a patient who was coping adequately at baseline and midtreatment reported not coping well at end of treatment because of pain when swallowing. The adequacy of coping appeared to vary depending on the physical and psychological demands the patient had to face. Anticipation emerged at week 9 when patients were experiencing their worst symptoms and were anticipating the end of treatment and the results of their scans, which would determine whether the treatment was successful. That appears to be similar to the theme of waiting in suspense reported by Larsson et al. (2007), who studied patients with HNC six to eight weeks after radiotherapy. Those findings highlight a major issue among patients with HNC: the fear of recurrence experienced by cancer survivors. Coping interventions are needed to assist patients with that issue. One strategy is to educate patients about the wide variety of coping strategies used by participants in this substudy.
Issues Related to Treatment
Physical side effects of treatment were the most prevalent theme identified as an issue to be coped with, revealing specific areas of concern for patients with HNC and verifying findings of other researchers on coping with treatment side effects (Lees, 1999). Specific side effects included difficulty talking, eating, and swallowing; taste changes; excess mucous; and changes in body image. At the midpoint of treatment, patients reported coping with 17 different symptoms, with one patient reporting concurrent presence of three to four side effects at one time. The large number of symptoms patients coped with also has been reported by others (Hansen & Roach, 2007; Vissink, Jansma, Spijkervet, Burlage, & Coppes, 2003). Even one month after treatment, patients still identified pain (mainly in the throat), fatigue, and difficulty swallowing as issues. Treatment-related issues that were problematic for patients generally were related to the processes and procedures of radiation treatment, such as wearing a mask. Both treatment side effects and treatment-related issues revealed the complexities of the illness experience and the challenges posed to patients’ coping. Ten patients reported minimal or no issues at baseline, although that theme was less common at subsequent time points. That finding was surprising because patients were just starting their treatments and one might anticipate that they were coping with a variety of issues. Alternatively, patients simply may have been coping more effectively with their illness. In a study of patients with HNC, Moore et al. (2004) found that patients may underreport their pain and suffering. Finally, the theme of fear, anxiety, or worry was present at all time points, but particularly at baseline and end of treatment. Patients expressed distress about the uncertainties of their illness and their future. They were anxious about treatment and afraid of the outcomes. They worried about the cancer spreading, the treatment schedule, and whether they would endure their treatment. Those fears and worries have been observed by other researchers and clinicians (Hodges & Humphris, 2009). Clearly, uncertainties related to cancer cure and what the future holds are a major issue in the illness experience of patients with HNC. Additional study to determine interventions to assist patients in this area is needed.
Assistance With Coping
Patients used social support to cope with their treatment over the four study time points. They depended on their families and friends to assist them with many aspects of their lives, including traveling to outpatient clinic visits and radiation treatments, daily living activities, communicating with healthcare providers, managing symptoms, scheduling appointments, reading information and educational materials, and engaging in other activities to manage and cope with treatment. Patients also relied on those support people for companionship. As patients progressed with their treatment, more family and friend support was needed to cope with the resulting complexities. Patients used a broad range of coping strategies and also articulated acceptance of their situation or, occasionally, denial.
Of note, some patients took breaks from their situations by going to the mall or turning off their cellular phones to reduce disturbances to their focus on getting well. Sherman and Simonton (2010) reported coping strategies of ventilation, disengagement, and suppression of competing activities, but the wide array of activities reported in the current study provides insights into how patients may take the initiative to cope with their illness and treatment.
Mental outlook was a prevalent theme that helped patients’ cope, and that mindset increased as they progressed through treatment. Patients were convinced that they were getting through the treatment because of their mindset and that they were going to endure. That finding is important because it suggests that patients with a positive mental outlook represent a patient subgroup with a greater ability to cope. Each individual copes with illness and cognitively appraises his or her situation differently (Lazarus & Folkman, 1984). Therefore, mental outlook could have influenced the way patients coped with the physical and psychological demands of illness and treatment.
The current study was limited by the unrecognized individual biases of the researchers and the HNC content experts who analyzed the data. Interviews were conducted at four time points during radiation treatment and, therefore, cannot reflect the entire experience of coping in patients with HNC. During interviews, patients were experiencing fatigue and other factors that may have affected the amount and degree of self-reporting that occurred. Finally, different ways to ask about coping may have revealed different perspectives.
Implications for Nursing
The findings confirm previous research, but also provide new information about the ways in which patients with HNC cope with their illness experience. In the clinical setting, patients with HNC should be educated regarding the number and severity of side effects they may experience and be appraised of potential difficulties with scheduling, driving, and other logistic issues. Patients also should be informed of the types of support and coping strategies that can be helpful. Healthcare providers also should inform patients that they may experience low energy during treatment, thus requiring support of significant others who can assist them with a variety of activities and issues.
Additional research is needed to expand the findings related to patients’ coping during and after treatment because this study was small with limited exploration of coping. For example, future researchers should explore the illness and coping experience of patients with HNC who perceive that they are coping adequately, but then report multiple treatment-related issues. Another area for future research is an exploration of the issues, burdens, and individual coping of family and friends who provide social support to patients with HNC during treatment, which can ultimately strengthen support for patients and reduce the negative impact of caregiving.
This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.