Impacts of Caregiving on the Caregiver's Quality of Life
Caregiver burden is commonly used to describe multiple dimensions of distress that result from an imbalance between care demands and the availability of resources to meet those demands. Although quality of life is a multidimensional construct, the most studied aspect of quality of life in caregivers is psychological distress. Most family caregivers do not experience clinically significant levels of depression when providing care, but some studies report levels of depressive symptoms in caregivers that are similar to, or even higher than, those in patients with cancer.[Level of evidence: II]
In developed countries, few patients with retinoblastoma present with extraocular disease. Extraocular disease may be localized to the soft tissues surrounding the eye or to the optic nerve beyond the margin of resection. However, further extension may occur into the brain and meninges with subsequent seeding of the spinal fluid, as well as distant metastatic disease involving the lungs, bones, and bone marrow.
Standard Treatment Options
Orbital and loco-regional retinoblastoma
The physical aspects of caregiving have rarely been studied. Caregiving may be solely limited to physical care such as helping with toileting or eating but can also include lifting, positioning, transferring, massaging, and operating medical equipment. The physical demands of caregiving are closely related to medical variables such as the following:
Level of symptomatology.
Side effect profile.
Cancer patients require varying levels of practical assistance during the course of their illness. Cumulative sleep disruption and fatigue are common among caregivers who are on duty 24 hours a day or only during nighttime hours. Behaviors such as not getting enough rest or exercise and neglecting their own health can mimic depression in caregivers but can also contribute to the impairment of their health and quality of life.;[Level of evidence: II]
Social roles and relationships are profoundly affected by cancer. The nature and quality of the preexisting patient-caregiver relationship are important considerations in the assessment and treatment of caregiver burden. If marital or relationship strain predates the onset of cancer or pain, the caregiver may approach caregiving grudgingly. In addition, caregiving is time consuming and can lead to feelings of social isolation.
The social impact of cancer and pain can be ameliorated by social support, financial security, and stability at work. Given the increasingly chronic nature of cancer, caregivers may find that support in all of these areas erodes over time. Encouraging caregivers to network with other families and linking them with formal resources can help augment informal sources of social support.
The financial impact and hidden costs of cancer may affect caregiver burden. Families can incur financial burden from insurance deductibles, copayments, uncovered services such as transportation and home care, and lost salaries. Additional costs to caregivers, in terms of time associated with caring for a patient with cancer, include the following:
Traveling to and from medical appointments.
Waiting with patients for appointments.
Preparing for surgery and medical procedures.
Neglecting their usual activities and relationships.
Attending to patients who are hospitalized.
Other social costs include time spent at home during a patient's recovery, time spent addressing insurance issues, and disruptions of companionship, emotional support, conversation, and other forms of distraction.