Abstract
PurposeThis study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient’s death, and during bereavement.MethodsFCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6–9 months after SIPC (N = 160).ResultsAt the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient’s death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient’s condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use.ConclusionsThe findings offer a useful guide for adequately addressing FCs’ needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs’ situations in the future.
Highlights
Caregivers (FCs) support patients with advanced cancer but are affected by the patient’s disease themselves and experience specific but often unmet supportive care needs
The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26–100%) and care-related information (21–100%) [1]
While the number of needs seem to remain stable over time, specific needs seem to be time dependent: Managing difficult aspects of the patient’s behavior and adjusting to changes in the patient’s personality seem to increase over time [7], while the “need for knowledge about the disease” and other information needs seem to decrease over time [9]
Summary
Caregivers (FCs) support patients with advanced cancer but are affected by the patient’s disease themselves and experience specific but often unmet supportive care needs. Additional frequently reported unmet FC needs were education in symptom management and care [2,3,4,5], daily living needs [6, 7], dealing with prognostic uncertainty [7,8,9,10], and reducing the patient’s stress [7, 11]. While the number of needs seem to remain stable over time, specific needs seem to be time dependent: Managing difficult aspects of the patient’s behavior and adjusting to changes in the patient’s personality seem to increase over time [7], while the “need for knowledge about the disease” and other information needs seem to decrease over time [9]. Bereaved FCs reported a lack of bereavement support and emotional assistance [16] or impersonal, generic, or just standard practice bereavement support [15]
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