Coping Among Patients With Head and Neck Cancer
Coping Among Patients With Head and Neck Cancer
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.
Abstract and Introduction
Abstract
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.
Introduction
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.
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