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 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 is 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 care giving. 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 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.