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      Patients’ Experiences of Telehealth in Palliative Home Care: Scoping Review

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          Abstract

          Background

          Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care.

          Objective

          The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care.

          Methods

          A scoping review was conducted using the methodological framework of Arksey and O’Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data.

          Results

          The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home.

          Conclusions

          The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.

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          Most cited references53

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          Integration of oncology and palliative care: a Lancet Oncology Commission

          Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.
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            Using Information and Communication Technology in Home Care for Communication between Patients, Family Members, and Healthcare Professionals: A Systematic Review

            Introduction. Information and communication technology (ICT) are becoming a natural part in healthcare both for delivering and giving accessibility to healthcare for people with chronic illness living at home. Aim. The aim was to review existing studies describing the use of ICT in home care for communication between patients, family members, and healthcare professionals. Methods. A review of studies was conducted that identified 1,276 studies. A selection process and quality appraisal were conducted, which finally resulted in 107 studies. Results. The general results offer an overview of characteristics of studies describing the use of ICT applications in home care and are summarized in areas including study approach, quality appraisal, publications data, terminology used for defining the technology, and disease diagnosis. The specific results describe how communication with ICT was performed in home care and the benefits and drawbacks with the use of ICT. Results were predominated by positive responses in the use of ICT. Conclusion. The use of ICT applications in home care is an expanding research area, with a variety of ICT tools used that could increase accessibility to home care. Using ICT can lead to people living with chronic illnesses gaining control of their illness that promotes self-care.
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              Home Telehealth Uptake and Continued Use Among Heart Failure and Chronic Obstructive Pulmonary Disease Patients: a Systematic Review

              Background Home telehealth has the potential to benefit heart failure (HF) and chronic obstructive pulmonary disease (COPD) patients, however large-scale deployment is yet to be achieved. Purpose The aim of this review was to assess levels of uptake of home telehealth by patients with HF and COPD and the factors that determine whether patients do or do not accept and continue to use telehealth. Methods This research performs a narrative synthesis of the results from included studies. Results Thirty-seven studies met the inclusion criteria. Studies that reported rates of refusal and/or withdrawal found that almost one third of patients who were offered telehealth refused and one fifth of participants who did accept later abandoned telehealth. Seven barriers to, and nine facilitators of, home telehealth use were identified. Conclusions Research reports need to provide more details regarding telehealth refusal and abandonment, in order to understand the reasons why patients decide not to use telehealth. Electronic supplementary material The online version of this article (doi:10.1007/s12160-014-9607-x) contains supplementary material, which is available to authorized users.
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                Author and article information

                Contributors
                Journal
                J Med Internet Res
                J. Med. Internet Res
                JMIR
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                1439-4456
                1438-8871
                May 2020
                5 May 2020
                : 22
                : 5
                : e16218
                Affiliations
                [1 ] Lovisenberg Diaconal University College Oslo Norway
                [2 ] Palliative Research Centre Department of Health Care Sciences Ersta Sköndal Bräcke University College Stockholm Sweden
                [3 ] Centre for Research Ethics & Bioethics Uppsala University Uppsala Sweden
                [4 ] Oslo Metropolitan University Oslo Norway
                [5 ] Clinical Psychology in Healthcare Department for Women’s and Children’s Health Uppsala University Uppsala Sweden
                Author notes
                Corresponding Author: Simen A Steindal simen.alexander.steindal@ 123456ldh.no
                Author information
                https://orcid.org/0000-0002-7676-8900
                https://orcid.org/0000-0003-0684-1401
                https://orcid.org/0000-0001-6011-6740
                https://orcid.org/0000-0002-8071-493X
                https://orcid.org/0000-0003-0933-2741
                https://orcid.org/0000-0002-9751-9698
                https://orcid.org/0000-0001-7935-3260
                Article
                v22i5e16218
                10.2196/16218
                7238080
                32369037
                ccf50508-0a1c-4a72-93bb-b148f2a9fddf
                ©Simen A Steindal, Andréa Aparecida Goncalves Nes, Tove E Godskesen, Alfhild Dihle, Susanne Lind, Anette Winger, Anna Klarare. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 05.05.2020.

                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 the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

                History
                : 11 September 2019
                : 17 December 2019
                : 18 January 2020
                : 10 February 2020
                Categories
                Review
                Review

                Medicine
                health care technology,review,palliative care,telemedicine
                Medicine
                health care technology, review, palliative care, telemedicine

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