A number of studies have identified the needs of family members providing care to patients with cancer. Recognition of the burden that the diagnosis and treatment of cancer places on family members has appeared in the cancer literature since the early 1980s. A study by Grobe and colleagues[11] identified methods of education that were provided for 87 patients in the advanced stages of cancer and their homebound caregivers. This study reported that families perceived that little, if any, education was provided to them. Hinds[12] conducted a study examining the perceived needs of 83 family caregivers. Findings indicated that family members felt inadequately prepared to provide care for their sick relatives in the home and identified numerous informational and skill deficits.
Oberst and colleagues[13] conducted a study to assess family caregiving demands and to examine the caregivers' perceptions of providing care in the home environment. Caregivers reported that the majority of their time was spent providing transportation, offering emotional support, and maintaining the household. More than one third of caregivers reported a lack of assistance from health professionals in providing care. In addition, caregiver demands escalated as the treatment regimen progressed. Another study[14] lends support to the isolative and stressful nature of caregiving in that 85% of a sample of cancer caregivers failed to utilize available resources to assist them in caregiving activities. In addition, 77% of the sample reported increased stress, and 28% required medication to help them cope with the burden associated with caregiving.
A number of review articles describe the impact of cancer on the family and family caregivers.[1,2,15-18] These accounts present persuasive documentation that caring for a person with cancer is a stressful experience and can have major emotional and physical consequences for caregivers. In their review, Sales and colleagues[19] concluded that a significant number of cancer caregivers exhibited psychological distress and physical symptoms. Predictors of caregiver distress included a number of illness-related patient variables including more advanced stages of cancer, disability, and complex care needs.
Weitzner and colleagues[20] noted the presence of increased depressive symptoms, anxiety, psychosomatic symptoms, restrictions of roles and activities, strain in marital relationships, and poorer physical health among family caregivers. Various dimensions of caregiver reactions have been identified by previous researchers.[21-23] Mor and colleagues[24] divided caregiving tasks into categories of personal care, instrumental tasks, and transportation. Each category was associated with greater demands as physiological factors of patients worsened or if their caregivers associated care with a high level of burden.[25,26] Foxall and Gaston-Johansson[27] described objective vs subjective burden in family caregivers of hospitalized bone marrow transplant patients. In their study, objective burden was linked to all health outcomes and occurred during critical time periods following bone marrow transplantation. Wallhagen[28] studied caregiver perception of caregiving demands and concluded that caregivers viewed personal demands (such as being with the patient as he or she declined) as more difficult than task demands. Given and colleagues[21,29] reported that patients' symptoms and symptom distress, declining mobility, and dependency with instrumental activities were linked to significant burden in family caregivers.
In general, the literature on caregivers of cancer patients highlights (1) the increasing number of patients who are being treated in ambulatory clinics with ongoing complex care needs, (2) the increasing number of complex tasks assumed by family caregivers, (3) the high proportion of unmet caregiver needs, (4) the subjective nature of the caregiving experience that encompasses both positive and negative elements, and (5) the conceptualization of caregiver burden as positively linked to negative reactions to caregiving.
