An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes: Physical support: management of side effects and late effects of treatment and assistance with personal tasks such as bathing. Emotional support Financial assistance: helping cover the expenses associated with cancer treatment Practical assistance: treatment monitoring, assistance with decision making and assistance with non-personal tasks such as grocery shopping Spiritual support
History
With medical advances in cancer screening and treatment, cancer has become a chronic rather than an acute disease with the result that patients survive longer with cancer. As a result, there has been a push towards outpatient care in recent years. Consequently, informal caregivers are now taking on the responsibility of caring for a loved one with cancer. Informal caregivers have become so essential that they are estimated to provide an average of 55% of the care needed. For years, research has been reporting the physical, psychological, financial, social, and spiritual repercussions of cancer on the patient. With the discovery of the distress, particularly psychological, that cancer could cause in patients, researchers also began to investigate whether caring for someone with cancer could have similar effects on informal caregivers. Over the years, many stressors have been identified and the effects of caring for a loved one with cancer are becoming well documented. Research in this area is continuing not only to better understand the caregiver's experience, but also to learn how their adjustment to the caregiver role impacts their ability to provide care to the cancer patient.
Psychological repercussions
Patient-caregiver differences
While both the cancer patient and caregiver are psychologically affected by cancer, the way it can affect them differs in many respects. While both patients and caregivers report significant unmet needs in the areas of managing daily life, emotions, and social identity, it has been found that patients are less concerned with these issues than caregivers are. This may be due to caregivers neglecting their own needs in order to improve the care of the patient. Men and women may have different perceptions of the cancer and its effects depending on their role as either the patient or the caregiver.
Phases of the cancer trajectory
Many researchers and clinicians have divided the cancer trajectory in order to explain the changes that occur to the patient and caregiver at various points throughout the cancer trajectory.
Initial or acute phase
The initial or acute phase encompasses the time of diagnosis. A number of stressors can lead to caregiver psychological distress with the diagnosis of treatment. At this point in the trajectory, the most salient psychological outcomes revolve around fear, uncertainty, sadness and feelings of powerlessness or helplessness. Additionally, in studies where cancer recurrence was not evaluated, caregivers report the highest levels of anxiety and post-traumatic stress symptoms during this phase. Caregivers are often frightened and upset by the diagnosis of their loved one, but they have an additional responsibility of trying to support the patient as they go through this difficult time. In the process of providing support, caregivers are often overlooked and have no one to turn to with their own concerns. This period is full of uncertainty, with both the patient and the caregiver not knowing what to expect in terms of treatment, recovery, and overall outcome. This can lead to significant psychological distress for some caregivers.