Multiple Effects of Illness on Caregivers' Quality of Life
The patient's cancer can have multiple effects on the caregiver's quality of life. The effects are manifested primarily on caregivers' emotional, physical, social, and spiritual well-being.
Emotional Effects
Cancer takes an emotional toll on patients and their family caregivers. Research indicates that couples coping with cancer report more emotional distress than those without cancer, and that the distress levels of patients with cancer and their caregivers are similar (Hagedoorn et al., 2008). In some studies, caregivers even report more distress and depression than patients. For example, Braun, Mikulincer, Rydall, Walsh, and Rodin (2007) found that the incidence of clinical depression in spouse caregivers was significantly higher than it was in patients they were caring for with advanced cancer (39% versus 23%, p < 0.0001). Northouse, Mood, Montie, et al. (2007) found similar results regarding emotional quality of life; spouse caregivers reported significantly lower emotional well-being than patients, particularly during the advanced phase of cancer.
Although caregivers often experience distress, research indicates that a subgroup of caregivers exists (20%–30%) who report higher levels of emotional distress or depression than other caregivers (Edwards & Clarke, 2004, 2005; Zwahlen, Hagenbuch, Carley, Recklitis, & Buchi, 2008). Identifying these caregivers early in the course of illness is important because, without intervention, caregivers' distress is likely to persist over time (Edwards & Clarke, 2004; Northouse, Templin, & Mood, 2001). A number of risk factors have been associated with higher levels of caregiver distress, such as low social support (Bishop et al., 2007), less confidence in providing care (Northouse, Mood, et al., 2002), high symptom distress in patients (Kurtz, Kurtz, Given, & Given, 2004), and high caregiver strain (Roth, Perkins, Wadley, Temple, & Haley, 2009).
Of these risk factors, caregiver strain is particularly problematic for caregivers. Caregiver strain is defined as the amount of stress or perceived stress associated with providing care. The relationship between caregiver strain and depression was examined in a large study by Roth et al. (2009) in which 43,099 adults aged 45 years or older in the United States were interviewed. It was found that about 12% were caregivers of patients with chronic disease. Roth et al. (2009) assessed caregiver strain with one question: "How much mental or emotional strain is it for you to provide care?" Caregivers with high strain reported about three to four times more depression than caregivers with lower levels of strain and more than study participants who were not caregivers. These findings suggest that assessing caregiver strain is essential, as is providing caregivers with information and support to help lessen their strain.
Fear of Cancer Recurrence: During survivorship, fear of recurrence often is thought of as a concern of patients only, but it concerns caregivers as well and can be contagious in families. Mellon, Northouse, and Weiss (2006) surveyed patients with cancer and their caregivers in a population-based sample and found that family caregivers reported significantly higher fear of recurrence than patients. A possible explanation for caregivers' higher fear was that they had less contact and communication with health professionals, as well as fewer opportunities to get their own questions answered or their fears addressed.
Physical Effects
What are the physical effects of the illness on caregivers? The most commonly reported effects are sleep problems and fatigue (Jensen & Given, 1993). Monin et al. (2010) found that caregivers may experience cardiovascular effects from stress and greater cardiovascular reactivity (i.e., increased blood pressure and heart rate), particularly in those caregivers who see suffering in their loved ones (Monin et al., 2010). Research also indicates that, because of the effects of stress hormones on disease processes and immune function, caregivers may be at increased risk for infections, exacerbations of their chronic diseases, and flare-ups in previously stable autoimmune illnesses (Bevans & Sternberg, 2012; Rohleder, Marin, Ma, & Miller, 2009). Investigators examined the amount of systemic inflammation, measured with C-reactive protein, in caregivers of patients with brain cancer versus matched controls over a one-year period (Rohleder et al., 2009). Caregivers of patients with cancer had significantly greater increases in their C-reactive protein during the interval between the patient's diagnosis and one year follow-up than did the controls who were not caregivers.
In addition to changes in immune function, a tendency exists among caregivers to use fewer healthy behaviors following the cancer diagnosis. In an Australian study conducted with caregivers of women with ovarian cancer, 52% of the caregivers reported a negative change in at least one healthy behavior after becoming a caregiver (Beesley, Price, Webb, & Australian Ovarian Cancer Study Group, 2011). Forty-two percent reported a decrease in their physical activity level, 35% gained weight, and 12% increased their use of alcohol. The odds of caregivers reporting at least one negative health behavior was greater among caregivers who were clinically depressed or anxious than those who were not.
Social Effects
The social effects of the illness are manifested in relationship strain, limits in social life, and in patient-caregiver communication issues. The strains in family relationships often are caused by changing roles in the family, and role overload in caregivers. Patients and caregivers also engage in fewer social activities because of health problems in patients and role overload in caregivers. As their social activities become restricted, caregivers may perceive less support from others, and have a tendency to feel more consumed by the illness.
Communication issues also are common among families coping with cancer (Manne, Dougherty, Veach, & Kless, 1999; Zhang & Siminoff, 2003). Four communication issues are commonly identified. First, patients and family caregivers may have different communication styles or preferences. For example, a patient may prefer to discuss the illness openly but their family caregiver may prefer very limited discussion. Their different preferences can create conflict. Second, some patients and family members hide their feelings from one another. The problem with that approach is that their worries can build up, increase their distress, hinder their ability to support one another and, therefore, they may cope less effectively with the illness. Third, some families avoid discussing sensitive topics such as cancer progression, end-of-life issues, and the need for hospice. By avoiding these topics, families are less effective at problem solving or discussing their changing needs. Fourth, in some families, long-standing conflicts can re-emerge and interfere with the family's ability to cope with cancer. Those situations may require outside help to address the preexisting conflicts.
Spiritual Effects
Research on the spiritual effects of cancer on patients and caregivers has increased in recent years, and this is an area in which we are more likely to see the positive effects of cancer on patients and their caregivers. For the most part, findings indicate that cancer can be a transformational experience (Kim, Schultz, & Carver, 2007). Patients and family members reconsider their priorities and reflect on what is important in their lives. Some may find new meaning and purpose in life. Research indicates that patients and family caregivers who are able to find more meaning in the illness also report better quality of life (Mellon & Northouse, 2001).
Research on the benefits of caregiving suggests that positives can come out of difficult situations. Six domains of benefit associated with caregiving include greater acceptance of things, more empathy, a greater appreciation of others, closer family relationships, more positive self-view, and better reprioritization of goals (Kim et al., 2007).