A cancer diagnosis is a major event for the person diagnosed and also to his or her family and caregivers. Some studies report that a cancer diagnosis actually has a greater impact on family members than on patients. Given outpatient care, longer survival, and patients’ wishes to be cared for at home, most cancer care is community-based. An aging and growing population are associated with more elderly patients being treated for cancer. These shifts in health services and population demographics result in cancer being one of the most common health conditions in receipt of informal caregiving. The majority of caregivers report taking on the role of caring because of the family responsibility, with little choice and no one else to provide care. For some, caregiving can extend for several years and be equivalent to a full-time job.
The aim of this article is to provide an overview of the issues faced by caregivers of people diagnosed with cancer, with a particular emphasis on the physical, psychosocial, and economic impact of caring. Having a better understanding of the critical and broad roles that caregivers play in the oncology setting and the impact of these on their health and well-being may assist health care professionals in supporting caregivers with these tasks and targeting services and interventions toward those most in need.
Caregiving is a common task, with one in 10 people having provided hands-on care for someone at the end of life (the majority of whom had cancer) in the past 5 years. The intensity of care defines distinct caregiver groups with differing needs. Some caregivers may have been unaware of the extent of the role when they became caregivers and often experience an insidious onset to the role; others feel they have little choice. Comparable levels of caregiving and burden across cancer and dementia caregivers; however, both of these groups provided more hours of care per week, assisted with a greater number of daily activities, and reported greater levels of physical burden and psychological distress than caregivers of individuals with diabetes or frail elderly.
Caregiving activities are varied and numerous, including personal care, mobility, transportation, communication, housework; management and coordination of medical care, administration of medications and therapies, emotional support, assisting with personal care, organizing appointments, social services, assistance with social activities, managing money; ambulating, transferring, incontinence care, shopping, housework, meal preparation, telephone calls and managing finances.
Taking on the caregiver role is a complicated transition that involves patients, families, and health professionals to varying degrees and may not have a definite start point. Furthermore, patient and caregiver preferences for type of care are not always congruent and require negotiation. Health professionals adopt varying degrees of involvement in the decision about the type of care for the patient and who will be involved in the caregiving but commonly initiate the discussion. Negotiated decisions often result in caregivers who are more prepared and able to cope with their role as they involve open discussion between caregivers and patients.
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Given the potential impact of caring for a person with cancer, the degree of burden experienced has been the focus of a considerable amount of research. Caregiver burden is defined as the extent to which caregivers feel that their emotional or physical health, social life, and financial status have suffered as a result of caring. Despite caregiving having a significant impact on caregivers’ well-being, their needs are frequently considered secondary to those of the patient or are overlooked. Some research has suggested that caregivers of people with cancer may have more unmet care needs than patients.
Impact on Physical Health and Lifestyle
Some studies have reported increased morbidity and mortality associated with caregiving. Frequently, the caregivers themselves are aged (most primary caregivers are age > 65 years and caring for patients in the same age group) and have significant health problems that affect and are affected by the caring role.
Caregivers are as vulnerable due to being in fair or poor health or having a serious health condition, more likely to have difficulty providing the care, having unmet needs in providing care, and providing high-intensity care. Of concern, vulnerable caregivers were no more likely than non-vulnerable caregivers to have received help from paid support services for their care recipients; overall, up to 82% of caregivers had no formal help in providing care. More than 7% of active caregivers, predominately caring for people with cancer at the end of life, would not take on the role again.
Cancer caregiving also has a negative impact on health-related activities, including skipping exercise. 42% of caregivers of people diagnosed with ovarian cancer reported decreasing their physical activity since their family member was diagnosed with cancer, and slightly more than one-third gained weight to a level that exceeded their healthy body mass index range. Although most caregivers did not report a change in their fruit and vegetable consumption, 12% increased their alcohol intake.
Impact on Anxiety and Depression
In studies looking at post-traumatic stress disorder (PTSD) in caregivers and partners of people with cancer, 4% of caregivers experienced PTSD, and one-third of partners experienced traumatic symptoms. Despite the significant psychological impact of caring, caregivers might not seek required treatment, with reporting that almost half of cancer caregivers who met diagnostic criteria for a psychiatric condition did not seek treatment for it.
Caregivers at increased risk of anxiety or depression:
- Are predominantly younger and female.
- Report lower socioeconomic status or education.
- Live with the patientare the spouses, rather than the children, of the patient or report poor relationship quality with the patient.
- Are unmarried or in shorter-term marriages.
- Report high levels of unmet needs for supportive care.
- Report comorbidities or more unhealthy behavior.
- Use avoidant coping.
- Feel less prepared for caregiving or confident in their abilities.
- Are caring for patients that are older, are at a later disease stage, have symptoms, and report poorer physical functioning.
- Have high caregiving demand and report higher intensity of care.
- Report lower levels of social support.
Impact on Social Activities and Relationships
Several studies have reported that caregiving disrupts social connectedness and activities as caregivers’ energy and time are focused on the patient and their recovery. Almost half of the caregivers have no time for themselves. The main concern here is that caregivers of people with cancer who have limited social networks and more restrictions in their daily activities are more likely to report caregiver burden.
The significant toll that a cancer diagnosis takes on a relationship is more and more understood. Even high-functioning couples may struggle to manage the stress and challenges of cancer, as well as changes in their relationships brought on by the cancer diagnosis. Such stress might lead to tension and conflict within the couple.
Despite the physical, social, and emotional burden of care, respite services are not well utilized by caregivers. Some patients and caregivers do not access specialist services because of the emotional difficulties in discussing death and dying.
Impact on Financial and Work Status
Caregiving creates a financial burden for family members, both in outright expenses and in lost income and benefits.
Caregiving also appears to reduce a person’s chance of being employed, and many caregivers are unable to work, need to take leave without pay, have fewer work hours, are in lower-paid jobs, or work from home to manage the caregiver demands. Reduction in paid work also contributed to social isolation. Long-term financial impacts of caregiving include loss of savings for retirement.
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While caregivers report experiencing surprise, shock, disbelief, anger, distress, fear, and depression in response to a cancer diagnosis, they also felt that caring for a person with cancer is an experience that can produce positive emotions. In one Australian study, 60% of caregivers were able to identify positive aspects of their role. When patients’ symptoms were minor, the time together was described very emotively as “precious time,” which allowed the exploration of emotions and expression of love for the patient. Happiness over quality time spent with the patient, the ability to explore and resolve issues, and feelings of value and self-worth have all been reported by caregivers. In addition, it has been suggested that caring for the patient may help caregivers to accept the death of the patient and work through their grief.