Caregivers of cancer patients are expected to function broadly, providing direct care, assistance with activities of daily living, case management, emotional support, companionship, and medication supervision. Caregivers of cancer patients generally undertake multifaceted responsibilities for tasks such as the following:
Administrative tasks (case management, management of insurance claims, bill payment).
Instrumental tasks (accompanying the cancer patient to medical appointments; running personal errands; managing cooking, cleaning, and other housekeeping tasks).
Navigation tasks (seeking information that may be difficult to find, finding a doctor).
Social support activities (providing companionship, socializing).
There is no standard staging system for pheochromocytoma and paraganglioma. Patients have traditionally been divided into one of three categories:
Localized (apparently benign) disease.
Metastatic disease. The most common sites of metastasis for pheochromocytoma or extra-adrenal paraganglioma are lymph nodes, bones, lungs, and liver.
The caregiver faces an overwhelming array of decisions to make during the course of a patient's illness. Decisions about treatment options, role changes, and finances generally are made by the patient-family unit.[3,4]
Even in the context of a strong doctor-patient relationship, caregivers may be more open to receiving information from other sources, both informal (family, friends) and formal (the Internet, Cancer Information Service, support groups). Families may make erroneous decisions based on biased information found in the media and on the Internet. In studies involving cancer patients and their caregivers, it is common for patients and their families to report the following:
Using the Internet to search for more information on the patient's cancer and its treatment.
Checking the information given by the doctor.
Researching other treatment options.
Seeking information on alternative treatments.
Seeking input from family and friends.
In a study involving 731 cancer patients, higher levels of education were associated with more active information seeking, and women with breast cancer were found to be more active in seeking information than were other patients.
Information needs among cancer patients are many and wide-ranging, with most patients reporting unmet needs for more information about tests and treatments, health promotion, side effects and symptoms, and interpersonal and emotional issues. Information needs among cancer caregivers are also varied and may differ from those of the patient.
Caregivers often become advocates for the patient with cancer. This role may include administrative tasks such as the following:[2,7]
Managing insurance claims.
Renewing prescription medication.
Exercising increased vigilance over the patient.
Reporting new symptoms or side effects.
Requesting symptom relief.
Incorporating lifestyle changes.
Encouraging treatment compliance.
Promoting healthy behaviors by the patient.
An important goal for oncologists is to improve the ability of patients to (1) understand symptoms and treatment decisions and (2) communicate their ongoing needs and preferences for support. However, communication problems can arise within certain patient groups, including older patients, patients with lower levels of education, and culturally disparate groups.
The family caregiver will often undertake the role of communicator for the patient. For both patients and caregivers, communication is affected by the family members' health information processing style and ability to manage sometimes threatening health information. Decision making can be complicated by serious gaps in recall and understanding that can occur during psychological and physical health crises and by differences in the communication styles of patients, family caregivers, and health care professionals.