Patient and families' perspectives on telepalliative care: A systematic integrative review.

BACKGROUND: Telepalliative care is increasingly used in palliative care, but has yet to be examined from a patient and family perspective. A synthesis of evidence may provide knowledge on how to plan and provide telepalliative care that caters specifically to patients and families' needs. OBJECTIVE: To synthesise evidence on patients and families' perspectives on telepalliative care. DESIGN: A systematic integrative review (PROSPERO #CRD42022301206) reported in accordance with PRISMA 2020 guidelines. Inclusion criteria; primary peer-reviewed studies published 2011-2022, patient and family perspective, >18 years, telepalliative care and English/Danish language. Quality was appraised using the mixed-methods appraisal tool, version 2020. Guided by Toronto and Remington, data were extracted, thematically analysed and synthesised. DATA SOURCES: MEDLINE, EMBASE, PsycINFO and CINAHL were searched in March 2022 and updated in February 2023. RESULTS: Forty-four studies were included. Analysis revealed five themes; the effect of the Covid-19 pandemic on telepalliative care, adding value for patients and families, synchronous and asynchronous telepalliative care, the integration of telepalliative care with other services and the tailoring and timing of telepalliative care. CONCLUSION: Enhanced access to care and convenience, as attributes of telepalliative care, are highly valued. Patients and families have varying needs during the illness trajectory that may be addressed by early integration of telepalliative care based on models of care that are flexible and combine synchronous and asynchronous solutions. Further research should examine telepalliative care in a post-pandemic context, use of models of care and identify meaningful outcome measures from patient and family perspectives for evaluation of telepalliative care.

Expectations and Experiences of Patients Recently Initiated to Centre-Based Dialysis Treatment.

Existing studies display a huge disparity in terms of the number of patients who regret having engaged in dialysis. Modifiable care processes such as providing sufficient information and education prior to decision-making have been shown to have a greater impact on patient satisfaction. Despite the importance of regret as a measure of the quality of the dialysis decision-making process, few studies have examined regret following dialysis initiation. Aim: To explore the expectations and experiences of patients who have recently started centre-based dialysis treatment. Methods: A qualitative explorative study of centre-based dialysis patients was performed. Data were collected using focus group discussions of 2-4 patients. The study was guided by interpretive description and thematic analysis was used to analyse data. Results: Three focus group discussions were performed. Participants (n = 8) consisted of six men and two women aged 54 to 80 years of age with a median age of 72. Three themes emerged from the data: 1. transition from being a non-dialysis patient to becoming a dialysis patient, 2. physical condition following initiation of dialysis treatment, and 3. limitations and social disruptions. Conclusion: The initiation of dialysis disrupted daily life in terms of fluctuating fatigue, strict schedules, and time lost. There was a loss of independence, and participants did not view dialysis as an active choice. Nurses may have a significant impact on the perception of dialysis. This study highlights the need for further research to develop interventions to support newly initiated centre-based dialysis patients to transition from non-dialysis to dialysis patients.

Patients' and Relatives' Preferences for a Palliative/Oncology Day Ward and Out-of-Hours Telemedicine-An Interpretive Description.

Demographical challenges require adaptation and tailoring of services to suit palliative patients' and relatives' needs. Therefore, an interpretive descriptive study was performed to explore patients' and relatives' preferences for the establishment of a day ward and out-of-hours telemedicine. Semi-structured interviews were performed, and data were analysed using thematic analysis. Participants included patients (n = 12) and relatives (n = 5). Three themes emerged: (1) 'Transport burden' relates to transition from home-to-hospital-to-home and acknowledges the strain placed on patients and relatives. (2) 'Role of relatives' contemplates how the role of families in patient care influences patient preferences. (3) 'Telemedicine-preferences and concerns' covers preferences and concerns related to telemedicine in palliative care. The burden of transport and living alone play substantial roles in preferences for place of treatment. Relatives of palliative patients who avail of a day ward and telemedicine may experience an increase in the burden of care. Recognition of concerns pertinent to palliative patients and relatives is an important step in planning new services in palliative care. Concerns may be mitigated by rethinking referral guidelines, incorporating voluntary services, early integration of telemedicine into palliative care and examining patients and relatives' expectations to care, but requires further research.

First Experiences with Online Last Aid Courses for Public Palliative Care Education during the COVID-19 Pandemic.

The Last Aid course aims to teach public palliative care by increasing public awareness and empowering people about the role of the individual in the death of loved ones. The Covid-19 pandemic, however, has altered educational methods prohibiting classroom settings. Therefore, an online course was created to enable continued and safe public palliative care education. A mixed-methods study was performed to examine the feasibility of delivering the Last Aid course online. Data collection included participant questionnaires with qualitative and quantitative data, observations and a focus group discussion. Data were analyzed using descriptive analysis and qualitative description. In total, 15 online Last Aid courses were held, 174 participants took part in the study and 92 completed questionnaires were included. Findings revealed overall course satisfaction for the online courses in line with previous findings for classroom teaching. The online platform enabled course participation from people previously unable or unwilling to attend, namely caregivers to dying relatives and younger people. Instructors displayed an ability to teach online. However, some instructors expressed frustration over reduced interaction and technical challenges, which was echoed by participant ratings showing that many lacked social networking with fellow participants. Nonetheless, this pilot study demonstrates the feasibility of the online Last Aid course. Attention must be given to increasing both participant-to-participant and instructor-to-participant interaction. More research on the long-term effects of Last Aid courses is needed.