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      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

      , Prof Dr 1 , 2 , , , MSc 3 , , Prof Dr 4 , , Prof Dr 2 , , Mag (FH) 4
      (Reviewer), (Reviewer)
      JMIR Research Protocols
      JMIR Publications
      palliative care, eHealth, family caregivers, outpatient care

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          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.


          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.


          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).


          The collaboration with the local mobile palliative care team for participant recruitment and data collection has been established. Recruitment is forthcoming.


          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.

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          Most cited references17

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          Informal care in Europe: findings from the European Social Survey (2014) special module on the social determinants of health.

          Against the background of a rising demand for informal care in European societies, this study sets out to provide descriptive information by gender on (i) prevalence rates of (intensive) informal caregiving, (ii) characteristics of (intensive) informal caregivers and (iii) consequences of (intensive) informal caregiving in terms of mental well-being.
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            Older people's views about home as a place of care at the end of life.

            To explore the attitudes of older people towards home as a place of care when dying. A two-phase qualitative study using focus groups and semi-structured interviews. Eight focus group discussions were held with 32 participants recruited from six purposively selected community groups representing older people in Sheffield, UK. A further 16 men and 29 women participated in semi-structured interviews. Participants identified that home was more than a physical location, representing familiarity, comfort and the presence of loved ones. While participants anticipated that home would be their ideal place of care during dying, practical and moral problems associated with it were recognised by many. Some had no informal carer. Others did not want to be a 'burden' to family and friends, or were worried about these witnessing their suffering. Those who had children did not wish them to deliver care that was unduly intimate. Concerns were expressed about the quality of care that could be delivered at home, particularly in relation to accommodating health technologies and providing adequate symptom relief. Worries were also expressed about those living in poor material circumstances. Mixed views were expressed about the presence of professional carers within the home. Although they were seen to provide much needed support for the informal carer, the presence of 'strangers' was regarded by some as intrusive and compromising the ideal of 'home'. Older people perceive factors they associate with 'home' as crucial to a good death, most notably presence of friends and family, but many anticipate that they would prefer to be cared for elsewhere when dying. These findings run counter to assumptions that the medicalised, institutional death cannot be a 'good death'. It is important that dying in hospital is not demonized, but rather efforts made to examine how institutional deaths can take on a more meaningful quality.
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              Hospital Admission of Cancer Patients: Avoidable Practice or Necessary Care?

              Background Cancer patients are frequently admitted to hospital due to acute conditions or refractory symptoms. This occurs through the emergency departments and requires medical oncologists to take an active role. The use of acute-care hospital increases in the last months of life. Patients and methods We aimed to describe the admissions to a medical oncology inpatient service within a 16-month period with respect to patients and tumor characteristics, and the outcome of the hospital stay. Results 672 admissions of 454 patients were analysed. The majority of admissions were urgent (74.1%), and were due to uncontrolled symptoms (79.6%). Among the chief complaints, dyspnoea occurred in 15.7%, pain in 15.2%, and neurological symptoms in 14.5%. The majority of the hospitalizations resulted in discharge to home (60.6%); in 26.5% the patient died and in 11.0% was transferred to a hospice. Admissions due to symptoms correlated with a longer hospital stay and a higher incidence of in-hospital death. Conclusion We suggest that hospital use is not necessarily a sign of inappropriately aggressive care: inpatient care is probably an unavoidable step in the cancer trajectory. Optimization of inpatient supportive procedures should be a specific task of modern medical oncology.

                Author and article information

                JMIR Res Protoc
                JMIR Res Protoc
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                November 2019
                28 November 2019
                : 8
                : 11
                : e13933
                [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
                Author notes
                Corresponding Author: André Fringer andre.fringer@ 123456zhaw.ch
                Author information
                ©André Fringer, Eleonore Arrer, Edith Maier, Wilfried Schnepp, Tom Ulmer. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 28.11.2019.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included.

                : 26 March 2019
                : 18 April 2019
                : 29 August 2019
                : 6 September 2019

                palliative care,ehealth,family caregivers,outpatient care


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