Development of an Early Warning System to Prevent Crises in the Palliative Home Care Setting of Patients and Their Informal Caregivers: Protocol for a Mixed Method Study

André Fringer; Eleonore Arrer; Edith Maier; Wilfried Schnepp; Tom Ulmer

doi:10.2196/13933

Development of an Early Warning System to Prevent Crises in the Palliative Home Care Setting of Patients and Their Informal Caregivers: Protocol for a Mixed Method Study

JMIR Res Protoc. 2019 Nov 28;8(11):e13933. doi: 10.2196/13933.

Authors

André Fringer^{1

2}, Eleonore Arrer³, Edith Maier⁴, Wilfried Schnepp², Tom Ulmer⁴

Affiliations

¹ Research Unit Nursing Science, Institute of Nursing, Department of Health, Zurich University of Applied Sciences, Winterthur, Switzerland.
² Department of Nursing Science, Faculty of Health, Witten/Herdecke University, Witten, Germany.
³ Institute of Applied Nursing Science, FHS St Gallen, University of Applied Sciences, St Gallen, Switzerland.
⁴ Institute for Information and Process Management, FHS St Gallen, University of Applied Sciences, St Gallen, Switzerland.

PMID: 31778114
PMCID: PMC6908972
DOI: 10.2196/13933

Abstract

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.

Keywords: eHealth; family caregivers; outpatient care; palliative care.

©André Fringer, Eleonore Arrer, Edith Maier, Wilfried Schnepp, Tom Ulmer. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 28.11.2019.