ABSTRACT
BACKGROUND: The dynamics of care arrangements depend on a complex interplay of many factors. To explicitly analyze these interrelationships the "dynamic model of care by relatives" was developed. The starting points are two transition phases: role acquisition and relief. Both decisively influence the adequacy of care arrangements from a caregiver's perspective and these interrelationships have not been addressed with sufficient precision in the existing literature. The model is designed to support professionals in considering the intricate interaction between role acquisition and relief in decision making. METHODS: A causal loop diagram was elaborated by means of a group model building process whereby four university departments contributed to the modeling process. Additionally, 50 external organizations were involved, e.g. outpatient care services, nursing homes, medical and social counseling centers. A total of 18 interviews with caregiving relatives provided the basis for reconstructing the dynamics of the model variables. Finally, computer simulations enabled a model analysis and a comparison with the interview results. RESULTS: The model can be depicted as a causal diagram with five elements characterizing the experiences of caregiving relatives, e.g. acquiring the caregiver role, exhaustion, and relief due to support from third persons. An example serves to illustrate how professionals can transfer the model into practice. DISCUSSION: The model offers ideal typical modes of behavior, allowing professionals to individually generate adequate care arrangements, thereby reflecting their heterogeneity.
Subject(s)
Caregivers , Decision Making , Nursing Homes , Counseling , HumansABSTRACT
BACKGROUND: Most people wish to die at home, but most people in Switzerland die in hospitals or nursing homes. Family caregivers often offer support so patients with palliative care needs can stay at home for as long as possible. However, crises and unplanned hospital admissions often occur in this setting because of family caregiver strain and symptom severity in patients. The so-called smart devices such as wearables or smartphones offer the opportunity to continuously monitor certain parameters and recording symptom deteriorations. By providing professionals with this information in a timely manner, crises in the home could be avoided. OBJECTIVE: The aim of this interdisciplinary study is to explore the symptom burden of people with palliative care needs who are cared for at home and to understand the development of crises in the home care setting. On the basis of the findings from this study, we will develop an early warning system to stabilize the home care situation and to prevent critical events from happening, thereby reducing avoidable hospitalizations. METHODS: A mixed method study is being conducted consisting of 4 main consecutive phases: (1) developing the monitoring system; (2) pretesting the system and adapting it to user needs; (3) conducting the study in the palliative home care setting with approximately 40 patients; and (4) distinguishing symptom patterns from the collected data specific to crisis emergence, followed by the development of an early warning system to prevent such crises. In study phase 3, each patient will receive an upper arm sensor and a symptom diary to assess symptom burden related to patients and family caregivers. A within-case analysis will be conducted for each patient's situation followed by a cross-case comparison to identify certain symptom patterns that may predict symptom deterioration (study phase 4). RESULTS: The collaboration with the local mobile palliative care team for participant recruitment and data collection has been established. Recruitment is forthcoming. CONCLUSIONS: We expect the findings of this study to provide holistic insight into symptom burden and the well-being of patients with palliative care needs and of their family caregivers. This information will be used to develop an early warning system to avoid the occurrence of potential crises, thereby improving palliative care provision at home. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/13933.
