The literature provides general understanding of information needs at broad stages of the cancer trajectory, demonstrating that caregivers’ information needs differ across these general stages. However, the broad divisions of the cancer trajectory limit practical application of this knowledge. Therefore, the more thoroughly we can define and understand the unique needs of caregivers’ immediate experience, the more effective educational interventions targeting these caregivers will be. In an effort to expand knowledge of caregiver information needs at more specific cancer-related key experiences, this study compared information needs across key experiences occurring within three broad stages of the advanced cancer trajectory: Treatment, End of Life, and Post-Patient Death. For all three broad stages, information needs were found to significantly differ between specific key experiences. This supports the need for more precise distribution of specific information content at distinct times in the illness course.
The start of treatment is a time that often requires decision-making about treatment options. Thus, illness and treatment information is crucial for effective patient and caregiver participation in this decision-making process. Accordingly, caregivers reported greatest desire for Disease/Medical information at this key experience of the Treatment stage. When leaving the hospital for home, whether to recover from an inpatient procedure or to initiate home- hospice care, caregivers have heightened responsibility for the patient’s home-based medical care. Accordingly, caregivers need information about Caregiving and Dying most during this transition, as many tasks of aftercare are novel to the non-medical professional, and may require complicated regimens.
The change in focus from curative to palliative treatment often involves difficult choices about whether or not to continue curative treatments, as well as among palliative care options. Patients and caregivers likely look for information to inform such decisions. It follows that Disease/Medical information is most needed when facing this transition at the End of Life stage. Information regarding Caregiving, Relating with the Patient, Family and Close Others, and Future Outlook is important both when transitioning from curative to palliative care, and when going into hospice. This follows logically for patient care at end of life when, outside of the immediate experience of the patient dying, attention can focus more on interactions between the caregiver and the patient and other family members, as well as on preparing for relationship closure. Dying information was most wanted when going into hospice, and least at patient death (when the patient is actively dying), reflecting the importance of information to cope through preparation for the future. As discussion of dying is difficult for most people, it is often avoided throughout the course of illness. However, hospice is often considered a marker of acceptance of the approaching end of life. Therefore, it is a time when more information about dying may be either necessitated by the patient’s condition, or more accepted given outward acknowledgement of death’s imminence. Before this acknowledgement, efforts to educate caregivers on dying may more likely be resisted.
The immediate aftermath of a person’s death requires the family to focus on practical tasks of legal, financial and medical issues (such as those involved in notification of the death and implementation of funeral plans) than are needed over the longer course of bereavement. As a result, caregivers have greater need for information regarding these practical issues during the period immediately after death.
Limitations and Future Directions
Several limitations arise from volunteer convenience sampling. Our recruitment yielded a primarily homogeneous sample of educated Caucasian female caregivers. Therefore, we were not able to examine other potentially influential factors on caregiver needs, such as gender, ethnicity, or education level. Understanding other groups of caregivers’ potentially unique information and support needs is crucial for advancing practical support for such caregivers. Future studies need to consider such caregiver characteristics as a sampling concern. Furthermore, volunteer sampling may bias results towards caregivers with less burden, as those more burdened by caregiving may be less likely to volunteer. Therefore, this sample may under-represent those with the greatest need.
This cross-sectional study found that differences exist in caregivers’ information needs across more specific key experiences within the cancer trajectory. However, retrospective report data has limitations. Longitudinal studies that directly assess needs over the illness trajectory could explore change in information need over time. Such studies could yield more refined and innovative educational interventions.
Furthermore, just as the stages of the cancer illness trajectory were too broad for specific clinical interventions, there is also a need for examining more specific needs across experiences. The information categories examined here offer an index of the general type of needs caregivers face at various experiences. However, to better offer the most relevant educational interventions, we need to identify even more specific needs. This study serves as a foundation for greater efforts to examine individual need items at these key transition events. While examination of the numerous individual needs in the Cancer Caregiver Needs Checklist was beyond the scope of this study, future work analyzing the individual needs across the ten cancer-related experiences will further inform development of educational caregiver interventions.
Dependence on informal caregivers is projected to continue to grow, requiring health care systems to develop innovated educational interventions to assure that caregivers are adequately prepared for the care responsibilities they face. Information relevance is a key feature to effective information interventions (Hardwick & Lawson, 1995
; Harrison et al., 1999
; Thielemann, 2000
). With a matrix of information needs by key cancer experience, even a small under-staffed cancer treatment program could prepare targeted educational interventions as the need arises. In this way, they could provide patients and caregivers with key experience-linked information in a timely and relevant manner. This study’s collection of systematic information needs data provides the foundation for developing a cancer caregiving information system to address such educational needs.