Keywords

Introduction

Cancer is a disease of multiple types, sites, and etiologies. Worldwide statistics indicate that cancer is a leading cause of death globally and accounted for 8.8 million deaths in 2015 (World Health Organization, 2018). As a disease, the impact of cancer crosses multiple boundaries of human functioning . Even in situations where disease is deemed to be cured, the impact of cancer and its treatment may persist in many ways for the remainder of one’s life.

Unfortunately, concerns related to cancer extend beyond the pervasiveness of the disease to also include the myriad consequences that stem from it. Due to the current forms of treatment available (e.g., chemotherapy, radiotherapy, surgery, and multimodality protocols), there are often significant long-term consequences related to the functioning and quality of life of individuals with cancer (Semple, Sullivan, Dunwoody, & Kernohan, 2004). Further, and not unimportantly, additional challenges within the realm of psychosocial functioning will also be experienced by their caregivers (Bornbaum, 2013). One important area that must be considered in the context of cancer and its treatment is the level of distress that it may create.

Irrespective of anatomical site, all individuals with cancer experience some level of distress related to their diagnosis and treatment (NCCN, 2013). Unfortunately, this problem is amplified in those with head and neck cancer (HNCa), a population who exhibits the highest rates of anxiety, depression, and suicide compared with other cancer sites (Kendal, 2006; Misono, Weiss, Fann, Redman, & Yueh, 2008). While the specific reasons underlying the disproportionate rate of suicide and depression in individuals with HNCa are unknown, researchers have speculated that the cause may be attributable to the devastating effect of the disease and its treatment on the quality of life of individuals with HNCa (Misono et al., 2008). The impact of the disease and its treatment on one’s appearance and essential functions such as breathing, swallowing, and speech with its associated disruption in communication were also cited as possible factors contributing to the elevated rates of depression and suicide in individuals with HNCa (Misono et al., 2008).

In addition to the concerns of the person with HNCa, it is apparent that the diagnosis of cancer and its accompanying sequelae (e.g., treatment- and disease-related consequences such as impaired breathing, speech, and swallowing) may also create varied levels of distress and may represent a significant crisis for family members and significant others (Blood, Simpson, Dineen, Kauffman, & Raimondi, 1994); these individuals are expected to grieve – or rather, respond to the loss (Lev & McCorkle, 1998) – while simultaneously supporting the health and psychosocial well-being of the individual with cancer. Given this level of burden, it is not surprising that partners of those with HNCa report higher levels of anxiety than those with the disease (Vickery, Latchford, Hewison, Bellew, & Feber, 2003). Consequently, it is apparent that elevated distress has the potential to impact not only individuals with HNCa, but also their loved ones and caregivers. However, the larger issue that may emerge in these circumstances is the very real potential that distress will be a persistent challenge in one’s long-term functioning. This chapter seeks to provide a review of issues specific to distress following the treatment of head and neck cancer (HNCa).

What is Distress in the Context of Head and Neck Cancer?

Psychosocial distress has been identified as a significant and ongoing problem among individuals diagnosed with cancer. Distress has become so prevalent that the National Comprehensive Cancer Network (NCCN) established a Distress Management Panel to address the issue. The NCCN (2013) has defined distress as:

…a multi-determined unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness and fears, to problems that can become disabling, such as depression, anxiety, panic, social isolation, and spiritual crisis. (p. 6)

As highlighted by the presence of a “continuum” of distress, there is an inherent distinction to be made between the pathologic experience of distress (e.g., clinical depression, anxiety disorders) and one’s natural response to a catastrophic life event, be that the threat to one’s own life or to the life of a loved one. Transitory negative feelings are a normal part of the cancer experience and are to be expected as individuals react to an unanticipated threat, to the potential and actual losses, and to the potential side effects of unpleasant and/or painful treatments (Haman, 2008). Cancer and its treatment often create feelings of uncertainty, anticipated changes to personal roles and functioning, and practical concerns related to medical care and financial well-being. As individuals and caregivers attempt to manage these concerns, they are likely to experience emotions such as sadness, anger, and fear. Data suggest that the majority of individuals will experience brief episodes of sadness or anxiety, insomnia, loss of interest in activities, thoughts of helplessness and hopelessness, or worries about potential catastrophic events such as the loss of life (Haman, 2008).

Since the relationship between individuals with cancer and their caregivers would almost certainly be interrelated, clinicians might wish to acknowledge that both partners may potentially experience negative consequences when the other is distressed (Northouse, Templin, & Mood, 2001; Segrin, Badger, Dorros, Meek, & Lopez, 2007). Therefore, efforts to develop an improved understanding of the factors that contribute to elevated distress in both those with HNCa and their caregivers are essential. Such recognition may have important implications for improving health-related and rehabilitation outcomes in association with HNCa.

Impact of Cancer as a Disease

The diagnosis of HNCa and its treatment carries with it a unique set of challenges that potentially exceed those associated with other sites of cancer (Howren, Christensen, Karnell, & Funk, 2012; Semple, 2001). Additionally, there is the ever-present concern related to the fear of cancer recurrence (Hodges & Humphris, 2009). Irrespective of treatment modality, individuals diagnosed with HNCa will likely face treatment-related challenges in oral communication, emotional expression, social interaction, and/or physical function. Because of the extensive array of potential consequences, the manner in which one learns to adapt or cope with these distressing changes may significantly influence his or her perceived quality of life and level of distress. Collectively, one’s ability to cope with distressing changes related to the disease and/or its treatment may impact both short- and long-term health-related outcomes (Elani & Allison, 2011; Horney et al., 2011).

For instance, side effects may include difficulties related to essential functions such as breathing, eating, swallowing, and speech production, in addition to a loss of smell and taste, decreased sensation, sticky saliva, excessive dry mouth, pain, swelling, and facial disfigurement (Bornbaum et al., 2012; Doyle, 1994; Payakachat, Ounpraseuth, & Suen, 2012). Further, some institutions require those individuals receiving chemoradiation treatment to undergo prophylactic extraction of all dentition in an effort to prevent future dental and mandibular problems (Hunter & Jolly, 2013). Moreover, these myriad side effects stemming from complex treatment regimens HNCa often serve to impair daily functioning and one’s ability to work or participate fully in avocational activities (Penner, 2009).

Disability and Employment

Research examining work-related disability in those with HNCa revealed that 52% of individuals who were employed at the time of diagnosis were unable to return to work following the completion of treatment (Taylor et al., 2004). Likewise, other researchers have reported a similar inability of individuals with HNCa to return to their previous employment for extended periods of time, if at all (Shone & Yardley, 1991; Taylor et al., 2004; Verdonck-de Leeuw, Van Bleek, Leemans, & de Bree, 2010). Even if those with HNCa are able to return to work following treatment, many have reported having to change their jobs because of poor health and/or physical discomfort related to treatment consequences (Liu, 2008). When compared with other types of cancer, individuals with HNCa have reported the highest risk of quitting their jobs following treatment for their cancer (Short, Vasey, & Tunceli, 2005). This change in employment status may have significant implications for the financial and psychosocial well-being of these individuals (Taylor et al., 2004). With emerging data that the age of diagnosis for HNCa is increasingly younger, as well as the likelihood that treatment will be successful, one may survive for many decades with these treatment-related deficits.

Loss of Independence

In addition to the impact on one’s employment status, further concerns may arise related to one’s independence and ability to participate in social activities. This may also impact one’s self image and relative value as a person (Crocker & Major, 1989; Schulz, Bookwala, Knapp, Scheier, & Williamson, 1996). To elaborate, research has shown that individuals treated for HNCa often either decrease the frequency of their driving or stop driving altogether during and after treatment because of treatment-related impairments, a potential result of shoulder dysfunction following neck dissection (Boulougouris & Doyle, 2018; Yuen, Gillespie, Day, Morgan, & Burik, 2007). Consequently, daily routines and tasks such as running errands or driving to and from work (if applicable) are disrupted, as those who have been treated for HNCa must increasingly rely on others (e.g., caregivers) for transportation (Yuen et al., 2007). This reliance on others to perform tasks which once symbolized independence (e.g., driving) may result in feelings of dependence and decreased self-worth in those with HNCa. As a result of these myriad concerns, individuals may experience substantial problems within the context of social and family settings. It is not, therefore, difficult to anticipate that the potential for social withdrawal (Doyle, 1994) and subsequent development of anxiety and depression may be observed (Pandey et al., 2007).

Visibility of Illness

Often, these concerns are exacerbated by the very visible side effects of HNCa and its treatment including the potential for physical disfigurement and scarring (Björklund, Sarvimäki, & Berg, 2010; Doyle, 1994). Physical changes secondary to treatment are common with HNCa; thus, there should be the anticipation that some change in body image will also occur. This in turn may lead to isolation and direct challenges to perceived quality of life (Doyle & MacDonald, Chap. 27). Because society tends to place more importance on the head and neck region than any other area of the body (Semple et al., 2004), gender-based considerations are essential. However, the work by Nash, Fung, MacNeil, Yoo, and Doyle (2014) has suggested that although women have been assumed to be more negatively impacted relative to changes in body image, men also demonstrate these concerns.

The emphasis on facial aesthetics and cosmesis may be particularly difficult for those with HNCa because the visible signs of HNCa and its treatment often cannot easily be concealed (Semple et al., 2004). Consequences such as these often prevent those with HNCa the privacy afforded by less visible forms of illness. As a result, those treated for HNCa may experience unwelcomed intrusions such as those associated with insensitive comments or staring (Björklund et al., 2010). These experiences may result in feelings of stigmatization which may then cause additional psychological distress (Doyle, 2005; Fife & Wright, 2000; Lebel et al., 2013). Factors such as these have led researchers to describe HNCa as the most emotionally traumatic form of cancer (Björklund et al., 2010; Koster & Bergsma, 1990).

Impact on Family and Loved Ones

Given that research has demonstrated a relationship between the emotional experiences of individuals with cancer and their caregivers (Northouse et al., 2001) – in essence suggesting that when one individual is distressed (e.g., person with HNCa), the other individual may also be distressed (e.g., caregiver) – there appears to be a potential to experience emotional trauma as a result of either having or caring for someone with HNCa. Thus, as with any serious illness, others who are close to the person with HNCa may suffer as well. Essentially, the emotional trauma caused by HNCa and its treatment may directly influence the emotional state of caregivers (Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne, 2008). Importantly, researchers have begun to acknowledge that HNCa not only has enormous consequences for the individual with the disease but also for their loved ones and caregivers, as the entire family dynamic may be disrupted by the disease and its accompanying consequences (Björklund et al., 2010). In this regard, it is equally important to acknowledge the support systems to those impacted by cancer may provide an essential buffer for depression (De Leeuw, De Graeff, Ros, Hordijk, Blijham, & Winnubst, 2000).

De Leeuw et al. have acknowledged that support systems may carry both negative and positive influences for those with HNCa; however, there does appear to be some benefit, or protective effect, of support systems in reducing depression in some individuals. Thus, it would seem important to understand and acknowledge the concerns of both the individual with HNCa and their caregivers since improvements in our understanding of the caregiver experience may promote the identification of meaningful ways to support caregivers. If one wishes to address the true impact of HNCa on the individual, it cannot be done without direct consideration of others; this is most particularly true relative to immediate family members and loved ones. For that reason, those closest to the individual with HNCa cannot be overlooked.

Caregivers

The definition and use of the term “caregiver ” have been discussed in the literature for several years (Hunt, 2003). Caregivers have been described as unpaid individuals who participate in the experiences and activities involved in the provision of assistance to a loved one who is unable to provide for themselves (Pearlin, 1994). Recently, authors have utilized the pragmatic suggestion that a caregiver is “who the person says it is” (Hodges & Humphris, 2009; Kissane & Bloch, 2002; Stenberg, Ruland, & Miaskowski, 2010), implying that the caregiver may consist of a blood relative, neighbor, friend, or other individual. Regardless of how the term caregiver is defined or who fulfills the role, providing care for another individual who has been diagnosed with cancer is an experience, shared closely with the recipient of care, which may affect numerous aspects of the caregiver’s life.

It has been well established that family members of individuals with cancer are affected by the illness throughout the trajectory of the disease (Stenberg et al., 2010). For instance, the consequences of the disease continue to impact family members well into the survivorship stage for those who survive the illness and into the end of life care for those who do not (McCorkle & Pasacreta, 2001; Stenberg et al., 2010). Family members often provide the primary source of emotional and social support for individuals with cancer. They also serve a key role in how effectively an individual with cancer is able to manage the impact of their illness and its treatment (Zwahlen, Hagenbuch, Jenewein, Carley, & Buchi, 2011). Considering that hospital stays have decreased in length (Cohen, Stock, Andersen, & Everts, 1997; Yueh et al., 2003), individuals with cancer are increasingly left to manage their illness and its side effects at home. As a result, the burden of responsibility for family members has increased; this in turn has made the role of family-based caregiving ever more vital (Stenberg et al., 2010). This shift toward family-based caregiving often requires a reorganization of personal roles and responsibilities on the part of the caregiver. Such reorganization may be necessary to address the needs of the individual with cancer as well as to ensure that the family is still able to function effectively and perform essential tasks (e.g., raising children, paying bills, home maintenance).

The Role of Caregivers

Most often, the spouse or significant other of the individual with cancer fulfills the role of primary caregiver (Mellon, Northouse, & Weiss, 2006). Despite the fact that these loved ones often receive minimal or no preparation, they are frequently tasked with many care-related responsibilities such as the provision of physical care, medication administration, transportation, emotional support, household management, and assistance with activities of daily living (Northouse & McCorkle, 2010). The demand for these tasks to be undertaken is often within a very short period of time following the diagnosis of their loved one’s cancer. While family caregivers have historically provided significant contributions to the care of their loved ones, the level of technical, physical, and psychological support currently required of caregivers has reached unparalleled levels in recent years (Given, Given, & Kozachik, 2001). This shift in burden of care toward caregivers results from healthcare system changes which have transferred the delivery of cancer care from an inpatient, hospital-based setting to ambulatory and home-based settings much sooner following treatment than in previous years (Cohen et al., 1997; Given et al., 2001; Yueh et al., 2003). This shift in care settings has translated to an increased level of caregiver involvement in the daily care of the individual with cancer (Given et al., 2001). Thus, since individuals are providing care for those with cancer much sooner following treatment (e.g., surgery), they must also deal with a more acute set of potential issues (e.g., wound care, infection, swallowing problems).

In addition to the disease- and treatment-related factors that caregivers are responsible for (e.g., disease and treatment monitoring, symptom management, medication administration, transportation to appointments), they must also ensure that the responsibilities usually fulfilled by the individual with cancer (e.g., errands, payment of bills, care for minor children, preparation of meals) are addressed. Ensuring the fulfillment of responsibilities may be particularly burdensome when the person with cancer is a spouse or family member, and the household tasks that were formerly shared between two individuals must now be accounted for by the caregiver alone. While this effort to preserve the normal level of family functioning is commendable, it can create feelings of role overload for the caregiver (Northouse & McCorkle, 2010). As the number of illness-related demands increases, caregivers experience numerous physical, psychological, and social consequences that potentially may exceed those experienced by the individual with cancer (Mellon et al., 2006). Moreover, research has demonstrated that as the level of demand on caregivers increases, they are placed at an elevated risk for the development of depression (Braun, Mikulincer, Rydall, Walsh, & Rodin, 2007). This elevated risk poses a problem not only for the caregiver’s well-being but also may impact their ability to provide complex care to another when their own physical and mental health is compromised.

A review of the effects of caring for an individual with cancer conducted by Stenberg et al. (2010) identified more than 200 problems and burdens associated with being a caregiver. This large range of concerns included issues related to one’s physical health, psychological state, social activities, and practical responsibilities. While the range of physical health concerns was quite extensive, the most commonly reported physical problems according to Stenberg et al. (2010) included pain, fatigue, sleep disturbances, loss of physical strength, loss of appetite, and weight loss; symptoms which would appear to mirror those of depression (Miller & Massie, 2009). Further complicating the situation, caregivers have been shown to prioritize the needs of the individual with cancer over their own (Williams, 2007), thus, leaving minimal time for maintaining activity and exercise, good nutrition, and regular healthcare check-ups. Consequently, caregivers experienced increased health-related concerns such as fatigue and sleep disturbances, which are exacerbated as symptom burden increases and functioning decreases in the individual with cancer (Palos et al., 2011). Symptom burden is a concept that is comprised of both the severity of symptoms and the individual’s subjective perception of the impact of the symptoms on their daily life and level of functioning (Cleeland, 2007). As a result, one could infer that as the level of symptom burden increases in individuals with HNCa, so too does the level of burden in caregivers.

In addition to physical consequences reported by caregivers , they have also reported a diverse range of positive and negative psychological responses to their experience as a caregiver. Specifically, caregivers have described a spectrum of emotions ranging from positive affect such as hopefulness and compassion for others, to negative emotions such as, bitterness, resentment, fear, anger, depression, and anticipatory grief (Williams & Bakitas, 2012). Regarding the ability to fulfill the responsibilities of providing care, some caregivers have noted positive feelings of accomplishment, while others report feeling overwhelmed (Williams & Bakitas, 2012). Upon reflection of the caregiving experience, some individuals have found caregiving to be positive for their self-esteem (Kim, Schulz, & Carver, 2007), while others have found that managing tasks and emotions in the context of caring for a loved one was immensely difficult (Williams & Bakitas, 2012). Given the broad spectrum of emotional responses to the experience of caregiving, it is apparent that the act of providing care to a loved one with cancer is a complex experience that is marked by both positive and negative affect. In these types of situations, recent research has suggested that guided, self-help approaches that seek to facilitate problem-solving may be of benefit (Krebber et al., 2017).

The provision of care for an individual with cancer is often a challenging, disruptive, and time-consuming activity (Williams & Bakitas, 2012). Given the level of burden facing caregivers, it is not surprising that multiple studies report higher levels of anxiety and depression in caregivers than the patients themselves (Mellon et al., 2006; Vickery et al., 2003). This finding is of central importance to understanding the experience of distress in caregivers because it acknowledges the psychological impact of the diagnosis and treatment of the individual with cancer on the caregiver. The experience of illness and treatment is clearly different for caregivers. They are often faced with the very real prospect of losing their partner or loved one. Such a possibility may produce feelings of grief and helplessness because they are unable to take a direct role in combating the cancer (Vickery et al., 2003).

Relative to social consequences , caregivers have frequently reported problems with employment, education, isolation, financial well-being, and the ability to fulfill roles (Stenberg et al., 2010). When a loved one is diagnosed with cancer, understandably, there are changes in the roles, expectations, responsibilities, and relationship dynamics of the family as individuals adjust to the reality of such a diagnosis and impact of the disease (Northouse, Williams, Given, & McCorkle, 2012). Accordingly, the level of burden on caregivers often increases. This increased burden may be particularly evident in caregivers who must balance their caregiving responsibilities with the provision of care for children and/or ailing parents. These individuals may feel overwhelmed with the demands on their time and energy as they try to balance their responsibilities to their loved ones with their own personal and employment-related obligations (Coristine, Crooks, Grunfeld, Stonebridge, & Christie, 2003). Further, caregivers without flexible jobs or employers who can accommodate such needs have often been required to use sick leave and vacation time in order to fulfill their new and potentially rapidly expanding obligations, which may subsequently create an additional level of economic strain (Stenberg et al., 2010). Thus, it is apparent that the social consequences of being a caregiver extend beyond the realm of one’s daily social participation in enjoyable activities, to also include the potential limitation of one’s future occupational and economic stability.

With regard to the financial burden of caregiving, an American study of the time costs associated with informal caregiving for cancer survivors found that on average, caregivers provided 8.3 hours of care per day for 13.7 months (Yabroff & Kim, 2009). When the economic burden of caregiving was evaluated relative to the value of the caregiver’s time providing care, the value of lost employment, and out-of-pocket expenditures (e.g., transportation, parking, home modifications, cancer care supplies, etc.), the financial costs were considerable, ranging from $31,442 to $91,670, depending on the specific type of cancer (Van Houtven, Ramsey, Hornbrook, Atienza, & van Ryn, 2010). These estimates of time costs and out-of-pocket expenditures highlight the substantial financial burden that often may be experienced by caregivers.

In addition to the financial stressors noted previously, caregivers have reported feelings of isolation (Northouse, Williams, et al., 2012; Williams & Bakitas, 2012). Not only does the work of caregiving disrupt their opportunity to engage socially with others (Stetz & Brown, 2004), but the caregiver’s personal needs are often neglected as their focus remains on the needs of the individual with cancer (Schubart, Kinzie, & Farace, 2008). Feelings of isolation and loneliness were particularly significant in caregivers without access to family or friends (Schubart et al., 2008). The inherent difficulty in serving as a caregiver to a loved one with cancer lies in both the overwhelming nature of the role and the fact that despite one’s best effort, the individual with cancer may still suffer and possibly succumb to their illness. Thus, the fear of losing a loved one may in and of itself induce tremendous feelings of anticipatory grief in the caregiver.

Caregivers are expected to grieve while simultaneously supporting the physical, psychological, social, and practical needs of their loved one. They must also work to maintain their regular family and employment-related responsibilities while balancing their own fears, anxieties, and concerns for the well-being of their loved one. Research seeking to understand the experience of caregivers has suggested that the provision of care for an individual with cancer may constitute a distressing life experience (Longacre, Ridge, Burtness, Galloway, & Fang, 2012; Roing, Hirsch, & Holstrom, 2008). Since the presence of elevated distress in caregivers has been identified as a factor that may compromise both the physical health and psychological well-being of both caregivers and individuals with cancer (Hagedoorn et al., 2008; Northouse et al., 2001), investigations into the factors which can influence distress may inform our understanding of the caregiver experience. Improved knowledge regarding the factors that contribute to and/or exacerbate distress may help to identify meaningful ways to both detect and possibly alleviate distress in these individuals.

Coping and Adjustment

While most individuals will eventually adapt to the changes brought on by the cancer experience (Vickery et al., 2003), a subset of individuals will experience distress to the extent that adaptive coping is impaired severely enough or long enough to be considered disruptive (Haman, 2008). A few days characterized by tearfulness and decreased interest in regular activities may be viewed as a component of adaptive coping to the changes and losses for both the individual with cancer and the caregiver (Haman, 2008). However, if the symptoms persist for extended periods of time – some sources suggest more than 1 week (Haman, 2008), while others advocate for at least 2 weeks or more (APA, 2000) – problems may arise with social support networks and one’s physical well-being and influence even treatment compliance and survival in individuals with cancer (Haman, 2008). Notably, certain symptoms such as suicidal ideation with accompanying plan and intent require immediate intervention, even if the symptoms only last for short periods of time.

Generally, it has been suggested that if distress persists for greater than a week, leads to noncompliance with treatment recommendations (McDonough, Boyd, Varvares, & Maves, 1996), or puts the individual (or others) in danger, intervention is required (Haman, 2008). Ideally, problematic distress in both those with cancer and their caregivers should be identified and addressed in order to avoid negative outcomes such as, fatigue, weight loss, decreased medical compliance, and increased hospital stays (DiMatteo, Lepper, & Croghan, 2000) in those with cancer, and compromised psychological functioning, and changes to the immune system that limit glucose control and increase cardiovascular vulnerability (Rohleder, Marin, Ma, & Miller, 2009) in caregivers.

Distress in Individuals with Head and Neck Cancer

Normal emotions such as sadness, worry, and fear occur in every person and are undoubtedly exacerbated by a diagnosis of any serious disease such as cancer. Clinical psychiatric disorders such as depression and anxiety do not develop overnight; rather, they are the cumulative outcome along the continuum of mental health that extends beyond normal emotional responses and psychological reactions (Mohan & Pandey, 2002). Research has established that across the trajectory of illness – from initial diagnosis through treatment, termination of treatment, survivorship, or recurrence and palliation – psychosocial distress is evident in approximately 25–45% of those with cancer (Carlson, 2003; Carlson et al., 2004; Singer et al., 2012; Zabora, Brintzenhofeszoc, Curbow, Hooker, & Piantadosi, 2001). Moreover, large-scale studies conducted at the Tom Baker Cancer Centre in Alberta, Canada (Carlson et al., 2004), and the Johns Hopkins Kimmel Cancer Center in Baltimore, Maryland (Zabora et al., 2001), of a representative sample of individuals screened for psychosocial distress detected high levels of fatigue (in nearly 50% of patients), depression (24%), anxiety (24%), and pain (26%), in addition to financial hardship and other challenges. Distress is a common sequela of cancer as a disease and, thus, requires careful clinical consideration.

From a therapeutic perspective, untreated depression has been shown to affect medical compliance, appetite, and wound healing and contribute to increases in length of hospital stays (DiMatteo et al., 2000; Jenkins, Carmody, & Rush, 1998; McDonough et al., 1996). Furthermore, the impact of depression on functions such as sleep, motivation, and energy level is also well documented (Roscoe et al., 2007). By intensifying fatigue and weight loss, depression has the potential to amplify treatment-related side effects for individuals with cancer, contributing to a vicious cycle that may not only worsen depression and overall rates of distress but also negatively influence disease control through decreased medical compliance (DiMatteo et al., 2000).

Relative to the impact of depression on medical compliance, research has demonstrated that depressed individuals with cancer take more breaks in treatment and thus require a greater length of time in order to complete the prescribed treatment protocol (Archer, Hutchison, & Korszun, 2008; Starmer, 2018). These findings have critical implications for individuals with HNCa given that the success of radiation therapy – one of the key forms of treatment for HNCa – is dependent in part on the completion of therapy as close as possible to the prescribed time (Lydiatt, Moran, & Burke, 2009). In consideration of these factors, the chances of survival are likely to be lessened in those individuals who experience depression, when compared to those individuals who are not depressed (Archer et al., 2008). Thus, given the numerous challenges facing an individual with cancer, support from caregivers is essential in order to facilitate successful coping, adjustment, and sometimes even survival (Foster et al., 2005). As a result, understanding the factors that contribute to elevated distress would appear to be an important component to ensuring the optimal well-being of both those with cancer and their caregivers.

Distress in Caregivers

While cancer has been shown to impact the quality of life of caregivers in myriad ways, researchers have recently suggested that the psychological well-being of caregivers is the area most significantly impacted during the initial stages of the caregiving experience (Northouse, Katapodi, Schafenacker, & Weiss, 2012). When the level of demand for care that is placed on caregivers exceeds their available resources (e.g., psychological wherewithal, personal coping mechanisms, social support), caregivers report feeling overwhelmed and distressed (Drabe, Wittmann, Zwahlen, Büchi, & Jenewein, 2012). Distress in caregivers is problematic for two key reasons: first for the problems that it poses to caregivers personally and second for the consequent impact on the individuals with cancer. Both the personal consequences of distress for caregivers and the resultant impact on those with cancer are discussed hereunder.

Relative to the personal toll of distress on caregivers, research indicates that between 20% and 40% of caregivers experience high levels of distress or depression (Edwards & Clarke, 2004; Longacre et al., 2012). However these incidence rates increased when the individual with cancer demonstrated poor physical functioning, high symptom distress, and advanced disease (Kurtz, Kurtz, Given, & Given, 2004). The prevalence of high emotional distress in caregivers is problematic for multiple reasons. Not only does it compromise their psychological well-being, but highly distressed caregivers may also experience changes to their immune system that can limit glucose control, promote flare-ups in autoimmune diseases, and increase vulnerability to cardiovascular diseases (Rohleder et al., 2009). These biologic consequences of distress increase the potential for the caregiver’s own health to suffer and, consequently, impede their ability to provide adequate care to the individual with cancer.

Regarding the impact of caregiver distress on individuals with cancer, research indicates that because of caregivers’ negative emotional states and impaired cognitive and physical functioning, caregivers have more difficulty with the effective administration of medication (Lau et al., 2010) and provision of optimal care (Park et al., 2009; van Ryn et al., 2011) to individuals with cancer. With respect to psychological functioning, high levels of anxiety in caregivers have been shown to increase anxiety in the individuals with cancer (Segrin et al., 2007), and longitudinal data suggest that when caregivers are highly distressed, there is a significant negative effect on the long-term adjustment of the individual with cancer (Northouse et al., 2001).

The findings of Northouse et al. (2001) are in line with the work of Hagedoorn et al. (2008) who conducted a meta-analysis of 46 studies that examined distress in couples coping with cancer (n = 2468 couples). They discovered a significant relationship between distress in caregivers and those with cancer (r = 0.29, p < 0.001) even after controlling for illness-related factors (e.g., disease stage). These findings indicate that both the individual with cancer and their caregiver’s emotional responses to the illness were interrelated. These results suggest that individuals with cancer and their caregivers react to the experience of cancer as an “emotional system” and that both the individual and their caregiver(s) should be viewed as the recipients of care from the perspective of health practitioners (Northouse, Katapodi, et al., 2012).

Benefits of Distress Management

Researchers have reported that psychosocial distress is evident in approximately 25–45% of individuals with cancer in North America (Carlson, Waller, Groff, Giese-Davis, & Bultz, 2013; Hurria et al., 2009; Zabora et al., 2001). Similar rates of distress have been reported in Asia (Kim et al., 2013; Lam, Shing, Bonanno, Mancini, & Fielding, 2012), South America (Decat, de Araujo, & Stiles, 2011), Europe (Andreu et al., 2012; Hofsø, Rustøen, Cooper, Bjordal, & Miaskowski, 2012), Africa (Peltzer, Pengpid, & Skaal, 2012), Australia (Dunn et al., 2012), and the Middle East (Omran, Saeed, & Simpson, 2012). The consistency of distress prevalence is interesting given that an individual’s perception of their disease varies greatly across cultures (Erbil et al., 1996). For instance, there are a number of documented culture-related variables that may influence distress and perceived quality of life levels among individuals with cancer. These include attitudes and adjustment toward health and illness, perceptions regarding the cause of disease, the role of the physician in one’s care, the interaction style between the practitioner and the individual with cancer, the role of one’s family, the individual’s needs and coping mechanisms, and the personal demographic factors such as one’s age and socioeconomic status (Gordon, 1990; Kleinman, 1986; Thomas, Carlson, & Bultz, 2009).

Given the documented cultural differences influencing perception of illness, it is noteworthy that the rates of distress among individuals with cancer remain so consistent globally. Nevertheless, the similar international prevalence rates imply that psychological distress related to cancer is a common, persistent, and universal concern that transcends cultural differences and as a result should be addressed in a clinically meaningful manner. Thus, exploring the unresolved psychological needs of individuals with cancer may provide information that could be generalized to those with cancer across the cultural spectrum.

When the psychological needs of individuals with cancer remain unresolved, these individuals are more likely to visit emergency rooms and make use of community health services (Carlson & Bultz, 2004). This increased service utilization is related to the physical symptoms resulting from psychological distress such as sleep disturbances, headaches, and gastrointestinal symptoms (Carlson & Bultz, 2004; Doyle, Day, Whitney, Myers, & Eadie, 2009). Consequently, these individuals place greater demands on the increasingly scarce time of their healthcare providers. Additionally, clinical studies have demonstrated that certain forms of psychosocial intervention (e.g., cognitive behavioral therapy, psychoeducational interventions) are beneficial to individuals with cancer (Chambers, Pinnock, Lepore, Hughes, & O’Connell, 2011; Fors et al., 2010; Hammerlid et al., 1999; Newell, Sanson-Fisher, & Savolainen, 2002).

For instance, a systematic review conducted by Newell et al. (2002) found that psychosocial interventions involving counseling (either structured or unstructured) and guided imagery have been shown to improve quality of life and the general functioning of individuals with cancer. Furthermore, participants from multiple studies asserted that they would use the psychological resources again and would recommend them to other individuals diagnosed with cancer (Hamilton, Miedema, MacIntyre, & Easley, 2011; Miller et al., 1998). Thus, this information suggests that if psychological distress can be identified early and addressed in a meaningful manner (i.e., lessened or alleviated), then perhaps not only can we improve the overall functioning of individuals with cancer, but we may also be able to reduce the economic burden on the healthcare system that arises as a result of untreated or poorly managed distress.

Several reviews of the literature have noted that psychological therapies may assist individuals in several ways including improving sexual functioning (Penedo et al., 2007); enhancing quality of life, emotional adjustment, and coping skills (Hamilton et al., 2011; Henderson et al., 2011); and increasing physical health and functional adjustment (Penedo et al., 2007). Further, such intervention has been reported to reduce disease- and treatment-related symptoms in individuals with cancer (Hart et al., 2012) and general physical symptoms in caregivers (Birnie, Garland, & Carlson, 2010). Addressing negative psychosocial outcomes such as distress is a critical component to the delivery of comprehensive healthcare. Without the early identification of problematic distress levels, individuals may experience innumerable consequences related to physical, psychological, and social functioning  – the core components of one’s evaluation of their perceived quality of life. Therefore, these consequences may ultimately result in decreased quality of life for those living with cancer, as well as the well-being and quality of life of their caregivers.

Thus, efforts to support the identification of distress in both individuals with cancer and their caregivers should be undertaken in an effort to inform the individuals charged with their care (and those most suited to assisting them) of when the level of psychosocial concern (e.g., distress) has reached a problematic point and specifically where intervention efforts may be directed in order to be of most benefit. Fortunately, a number of validated instruments have been devised which are capable of assessing the level of an individual’s perceived distress and their accompanying multidimensional concerns. The use of these tools in both clinical environments may help to develop a better understanding of not only the prevalence of distress in individuals with HNCa and their caregivers but also the specific problems that these individuals face and the consequent impact of this distress and these perceived problems on their quality of life and daily functioning .

A diagnosis of HNCa carries with it a unique set of treatment-related challenges that influence physical function, social interaction, and emotional expression. Not surprisingly, treatment of HNCa has been associated with some of the highest rates of anxiety, depression, and suicide when compared with other cancer sites (Bjordal & Kaasa, 1995; Kendal, 2006; Misono et al., 2008). These findings suggest that HNCa is highly traumatic psychosocially with a multitude of complex patient concerns emerging.

Relative to the caregiver experience, these individuals are expected to support the physical, psychological, social, and practical needs of their loved one while simultaneously grieving their own losses – both real and anticipated. They must also work to maintain their regular family and employment-related responsibilities while balancing their fears, anxieties, and concerns for the well-being of their loved one. Ultimately, the provision of care for an individual with cancer may be a challenging, disruptive, and time-consuming endeavor (Williams & Bakitas, 2012). Given the level of burden facing caregivers, it is not surprising that multiple studies report higher levels of anxiety and depression in caregivers than in the individuals with cancer (Mellon et al., 2006; Vickery et al., 2003).

Conclusions

Acknowledgment of the “human side” of cancer care is essential to a compassionate and well-managed cancer care program. The time has come for healthcare providers, and the healthcare system at large, to acknowledge the roles of distress and quality of life as fundamental components of healthcare. Through understanding the relationship between distress and modifiable psychosocial factors, tailored interventions may be constructed with the goal of maximizing individual quality of life and reducing personal distress. Given the well-established and significant multidimensional challenges associated with HNCa, the aforementioned findings highlight the critical need to acknowledge, understand, and elucidate psychosocial distress in both those with HNCa and their caregivers.

Psychological distress related to cancer is a persistent and universal concern that transcends cultural differences and as a result must be addressed in a clinically meaningful manner. Despite this acknowledgment, less than 10% of distressed individuals are identified and referred to the appropriate psychosocial resources (Kadan-Lottick, Vanderwerker, Block, Zhang, & Prigerson, 2005). Failure to acknowledge and treat elevated distress among individuals with HNCa jeopardizes treatment outcomes, decreases quality of life, and increases healthcare costs (Zabora et al., 2001). Thus, in order to minimize the overall negative impact of HNCa and address the consequences of its treatment, distress requires careful clinical consideration. Distress may result in reductions in perceived quality of life, and, thus, efforts are encouraged to understand the presence of and variation in distress and quality of life across both individuals with HNCa and their caregivers.