Four inter-related themes emerged from this group of cancer family caregivers of patients receiving chemotherapy: (1) becoming a caregiver; (2) new and altered relationships; (3) personal responses to caregiving; and (4) antecedents and social context. Member checks support these themes as representative of the cancer family caregiving experience. The themes are consistent with and extend the existing literature,21–23
and provide implications for intervention development. The link between our findings and future intervention components are highlighted in and described below.
Possible Future Cancer Caregiver Intervention Components
There was abundant overlap between the expressed sentiments of our caregivers to patients receiving chemotherapy and those caring for someone receiving exclusively palliative24
or end-of-life care25
relative to attitude, emotional range, sense of responsibility, and relationships. For example, a qualitative study of nine caregivers providing palliative home care described lifestyle restrictions, a sense of isolation, the need to be a font of hope and optimism, guilt and frustration over competing demands, difficulty witnessing the patient's deterioration, and bitterness when they felt their caregiving efforts were not appreciated24
—all of which were noted by our sample. A study of 29 cancer caregivers to an adult at end of life revealed caregivers: have a “just-do-it” attitude, are challenged by uncertainty, believe they must be positive and hide their emotions from the patient, have a sense of responsibility and obligation to the role, note interdependence between their well-being and the patient's, and observe changes in the quality of their relationships.25
The similarities between caregivers to patients receiving chemotherapy with those at end of life may indicate important components of the experience endure over time. Possibly, interventions aimed at caregiver challenges early in the disease process will mitigate the presence or intensity of those challenges later in the disease trajectory.
While positive effects of caregiving are infrequently described,26
our results indicate caregiving can have positive outcomes, including time to reflect, prioritize relationships, and express appreciation and kindness. These positive aspects are related to the developmental tasks of remembering and reconciling advocated for patients at end of life.27,28
Innovative interventions can potentially be developed that support the positive aspects of caregiving and integrate the developmental tasks of the patient. Based on research with caregivers to people with dementia, positive aspects of caregiving measurement tool29
and conceptual framework30
have been developed. The experiences of dementia caregivers and cancer caregivers differ, primarily driven by the patient's cognition, physical deterioration, illness acuity, and length of time caregiving. The positive aspects measurement tool and conceptual framework will need to be tested and validated in the cancer caregiver population.
Positive aspects of caregiving must be distinguished from maintaining a positive attitude and defending against negative input. Pervasive in the caregiver literature31–33
including the data presented here, is the caregiver's expressed belief that s/he must maintain a shroud of silence around all negative emotions and doubts. Some of our caregivers committed to a cheerleader role—ever cheerful, optimistic, and encouraging. The cheerleader stance, however, can undermine the prospect of authentic communication. While well-intentioned, it may create feelings of isolation from the patient. Several caregivers said they adopted the upbeat façade to protect the patient. The façade also appears to be a mechanism by which the caregiver safeguards their own concerns, sense of despair and hopelessness. Interventions aimed at cultivating open, genuine communication may assist the caregiver and the patient.
Our results show the foundational importance of antecedent caregiving experiences and social support network. This foundation may be the difference between caregivers who are able to have a positive, fulfilling, growth experience from caregiving, and those who are encumbered by the role and tasks. Future interventions for caregivers should assess antecedent experiences and social networks in order to identify those who might be at high risk for caregiving difficulty and thus require additional support. Obviously, prior experiences cannot be changed—but if identified they could be processed such that they become a resource rather than an inescapable misery. Also obvious is the fact that social support networks take years to cultivate and reinforce. It is unrealistic to think an intervention can help a caregiver form a social support network; however, it is reasonable to consider an intervention that might help caregivers identify and communicate effectively with key people who can assist them.
Our study is limited by the cross-sectional design, especially since the caregiver experience is dynamic.11
The four expressed themes are a function of time. For example, the personal responses a caregiver has to the demands of caregiving change depending on how ill the patient is and whether the caregiver has had time to adapt to the role and learn new skills. Future research will benefit from ongoing dialogue with caregivers at different times during the illness, especially to inform intervention development.
As a qualitative study, our sample is unique due to the number (N=135) and diversity of caregivers (45 men, 24 people of color, 35 adult children) who provide a rich, multivocal dataset describing a breadth of experiences. The large sample allows for future analyses of the influence of caregiver's gender, ethnicity, and relationship to the patient.