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Introduction Research in palliative care (PC) is often regarded as challenging due to the vulnerability of the population and other peculiarities. We aim to systematically identify barriers to research in PC in the literature. Methods The electronic databases CINAHL, MEDLINE were searched for papers published in the last 25 years. Citations and then abstracts were screened for inclusion. Original papers were included on first-level analysis. On a second level reviews, reports, and position papers were analyzed. Papers containing a direct patient report were specifically analyzed. Barriers were categorized (ethical considerations, financial and time expenses, study design and methodology, human resources and politics) and results quantified. Results Twenty-one original papers and 65 other papers were included. Five studies involved patients directly, five were systematic reviews, three were study experiences, and seven were surveys or workshop reports. Most papers originated from UK, USA, or Norwegian Universities. Ethics and methods were the most often mentioned categories on both levels. Accrual, attrition, and gatekeeping were frequently named barriers. Complex invasive studies or possible side effects hinder patients' participation, as patients are often willing to participate for altruistic motivations. Discussion Barriers to PC research are ethical concerns and methodological challenges. Possible strategies to overcome methodological barriers include international collaborative efforts to include more patients and improve study designs. Ethical barriers indicate the need for patient involvement in the research development process and tailoring research specifically to the PC population. [ABSTRACT FROM AUTHOR]

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 We help JMIR researchers to raise funds to pursue their research and development aimed at tackling important health and technology challenges. If you would like to show your support for this author, please donate using the button below. The funds raised will directly benefit the corresponding author of this article (minus 8% admin fees). Your donations will help this author to continue publishing open access papers in JMIR journals. Donations of over $100 may also be acknowledged in future publications. Suggested contribution levels: $20/$50/$100 [ABSTRACT FROM AUTHOR]