Healthcare professionals' experiences of eHealth in palliative care for older people: challenges, compromises and the price of dignity.

PURPOSE: To explore whether and how eHealth solutions support the dignity of healthcare professionals and patients in palliative care contexts. METHOD: This qualitative study used phenomenographic analysis involving four focus group interviews, with healthcare professionals who provide palliative care to older people. RESULTS: Analysis revealed four categories of views on working with eHealth in hierarchical order: Safeguarding the patient by documenting-eHealth is a grain of support, Treated as less worthy by authorities-double standards, Distrust in the eHealth solution-when the "solution" presents a danger; and Patient first-personal contact with patients endows more dignity than eHealth. The ability to have up-to-date patient information was considered crucial when caring for vulnerable, dying patients. eHealth solutions were perceived as essential technological support, but also as unreliable, even dangerous, lacking patient information, with critical information potentially missing or overlooked. This caused distrust in eHealth, introduced unease at work, and challenged healthcare professionals' identities, leading to embodied discomfort and feeling of a lack of dignity. CONCLUSION: The healthcare professionals perceived work with eHealth solutions as challenging their sense of dignity, and therefore affecting their ability to provide dignified care for the patients. However, healthcare professionals managed to provide dignified palliative care by focusing on patient first.

National digital strategies and innovative eHealth policies concerning older adults' dignity: a document analysis in three Scandinavian countries.

BACKGROUND: Scandinavian countries are internationally recognised for leading the way in older adult care and in digitally transforming healthcare. Dignity has become a central value in care for older adults in all three Scandinavian countries. Investigating documents about digitalisation in these countries can offer insights into how the dignity of older adults is impacted by digitally transforming healthcare. This study aims to provide knowledge about digital strategies and eHealth policies concerning older adults' dignity in three Scandinavian countries: Norway, Sweden and Denmark. METHODS: National-level documents by the Norwegian Directorate of eHealth, the Norwegian Directorate of Health, the Swedish Ministry of Health and Social Affairs and the Danish Ministry of Health concerning older adults were used as data sources. In addition, a systematic search of databases, informed by the Joanna Briggs Institute framework for systematic reviews of text and opinion papers, was undertaken to find relevant papers. All extracts concerning national digital strategies or innovative eHealth policies were deductively coded. Thereafter, extracts concerning older adults were inductively coded using a thematic analytic approach. RESULTS: A total of 26 sources satisfied the inclusion criteria, 14 governmental papers and 12 other papers. The three countries' national digital strategies focused on access to digital technologies and continuous learning for digital skills. The included papers describing national eHealth policies underlined the importance of placing the patient at the centre of healthcare and how digital systems can increase feelings of safety. Both types of documents concerned access to data, digital device security and the human dimension of care. CONCLUSION: The findings present evidence on Scandinavian countries' national digital strategies and innovative eHealth policies concerning older adults' dignity. The documents describe a lack of digital competence among older adults, resulting disengagement may put their well-being and human dignity at risk. Findings also underline the importance of security and at the same time the human dimension of care: Use of new digital systems must be meaningfully integrated into digital strategies and eHealth policies. All three Scandinavian countries strategies and policies underline the importance of equal access to healthcare services, as thus they promote a stance of dignified care.

Telehealth and digital developments in society that persons 75 years and older in European countries have been part of: a scoping review.

BACKGROUND: Demographic changes are leading to an ageing population in Europe. People are becoming more dependent on digital technologies and health ministries invest increasingly in digitalisation. Societal digital demands impact older people and learning to use new telehealth systems and digital devices are seen as a means of securing their needs. METHODS: The present study undertakes a scoping review in order to map relevant evidence about telehealth and digital developments in society involving citizens aged 75 and over in European countries. It focuses on their experiences and the main barriers to, and facilitators of, societal digital demands. A framework proposed by Arksey and O`Malley was used to guide the scoping review process. The studies included in the review covered telehealth, digital technology and digital devices, and the context covered participants` own home or surroundings. A comprehensive search on PubMed/MEDLINE, CINAHL, Scopus, Embase and Open Grey was undertaken. RESULTS: Out of 727 identified citations, 13 sources which met the inclusion criteria (9 original study articles, 2 theses, 1 letter about a product and 1 project report). Few of the studies identified have investigated European citizens 75 years and older separately. The studies included varied in their design, location and focus. Older people have experienced both telehealth and digital devices making life easier and the opposite. The outstanding facilitator found was that technology should be easy to use, and difficulty in remembering the instructions was seen as an important barrier. Interestingly, both social support and lack of social support were found as facilitators of using new devices. CONCLUSIONS: Telehealth may give a sense of security but learning to use a new device often takes extra effort. Older people were more open to new devices if the possible advantages of the new technology outweighed the effort that would be involved in adopting a new strategy. As technology develops rapidly, and life expectancy in Europe is anticipated to rise continually, there is a need for new and additional research among older European citizens. Future research should cover the technical solutions most relevant to older people today, social support and participants` access to the devices.

Citizen-Patient Involvement in the Development of mHealth Technology: Protocol for a Systematic Scoping Review.

BACKGROUND: The development of mobile technology for information retrieval and communication, both at individual and health organizational levels, has been extensive over the last decade. Mobile health (mHealth) technology is rapidly adapting to the health care service contexts to improve treatment, care, and effectiveness in health care services. OBJECTIVE: The overall aim of this scoping review is to explore the role of citizen-patient involvement in the development of mHealth technology in order to inform future interventions. By identifying key characteristics of citizen-patient involvement in system development, we aim to improve digital communication and collaboration between health care providers and citizen-patients, including sharing of health care data. METHODS: The systematic scoping review will follow the Joanna Briggs Institute methodology for scoping reviews by searching literature in 3 steps. We will include literature reporting on the public, citizens, and patients participating in the development of mobile technology for health care purposes in MEDLINE, CINAHL, Scopus, EMBASE, and ProQuest Dissertations and Theses. A preliminary search was completed in MEDLINE and Scopus. The screening process will be conducted by 2 of the authors. Data will be extracted using a data extraction tool prepared for the study. RESULTS: The study is expected to identify research gaps that will inform and motivate the development of mHealth technology. The final report is planned for submission to an indexed journal in November 2020. CONCLUSIONS: To our knowledge, this review will be the first review to provide knowledge about how citizen-patients participate in system developments for mHealth tools and the value that such involvement adds to the system development process. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/16781.

Patients' contribution to the development of a web-based plan for integrated care - a participatory design study.

AIMS AND OBJECTIVES: The aim was to explore how a participatory design (PD) approach involving adult patients and parents of children with disabilities could contribute to the development of an electronic "Individual Care Plan" (e-ICP) in Norway. The system was intended to simplify multi-disciplinary cross-sector documentation and collaboration between care professionals and patients in care planning. METHODS: The data in the study comprised semi-structured interviews with patients and parents, as well as field notes. Systematic text condensation (STC) in a stepwise analysis model was performed on the data. RESULTS: Testing through three phases resulted in system improvements and additional functionality according to the participating patients' needs and requests. PD was initially applied, enabling a constructive dialogue between developers and patients. System training and collecting patient expectations was a preliminary task. Patients then brought testing experiences to the system developers, focusing first on access to information and document filing. Later, finalizing testing towards a tool for interaction with care professionals was a main concern. CONCLUSION: Adult patients and parents participating in the study provided various insights and expectations that informed system improvements and resulted in new functionality. System development and testing in healthcare can successfully incorporate patient involvement.

Web-based collaboration in individual care planning challenges the user and the provider roles - toward a power transition in caring relationships.

BACKGROUND AND OBJECTIVE: The Individual Care Plan (ICP) was introduced in Norway to meet new statutory requirements for user participation in health care planning, incorporating multidisciplinary and cross-sector collaboration. A web-based solution (electronic ICP [e-ICP]) was used to support the planning and documentation. The aim of this study was to investigate how web-based collaboration challenged user and professional roles. METHODS: Data were obtained from 15 semistructured interviews with users and eight with care professionals, and from two focus-group interviews with eight care professionals in total. The data were analyzed using systematic text condensation in a stepwise analysis model. RESULTS: Users and care professionals took either a proactive or a reluctant role in e-ICP collaboration. Where both user and care professionals were proactive, the pairing helped to ensure that the planning worked well; so did pairings of proactive care professionals and reluctant users. Proactive users paired with reluctant care professionals also made care planning work, thanks to the availability of information and the users' own capacity or willingness to conduct the planning. Where both parties were reluctant, no planning activities occurred. CONCLUSION: Use of the e-ICP challenged the user-professional relationship. In some cases, a power transition took place in the care process, which led to patient empowerment. This knowledge might be used to develop a new understanding of how role function can be challenged when users and care professionals have equal access to health care documentation and planning tools.

Integrated care in Norway: the state of affairs years after regulation by law.

INTRODUCTION: A mandatory multidisciplinary plan for individual care, the 'Individual care Plan', was introduced by law in Norway in 2001. The regulation was established to meet the need for improved efficiency and quality of health and social services, and to increase patient involvement. The plan was intended for patients with long-term and complex needs for coordinated care. The aim of this study was to elaborate on knowledge of such planning processes in Norwegian municipalities. METHOD: A piloted questionnaire was sent to 92 randomly selected municipalities in 2005-2006, addressing local organization and participation in the work with individual care plans. Local political governance, size of the population, funds available for health care, and problems related to living conditions were indicators for analysing the extent to which the individual care plan was used five years after the regulation was introduced. RESULTS: Our results showed that 0.5% as opposed to an expected 3% of the population had an individual care plan. This was independent of the political, social and financial situation in the municipalities or the way the planning process had been carried out. The planning process was mostly taken care of by local health and social care professionals, rather than by hospital staff and general practitioners. DISCUSSION AND CONCLUSION: The low number of care plans and the oblique responsibility among professionals for planning showed that the objectives of the national initiative had not been achieved. More research is needed to determine the reasons for this lack of success and to contribute to solutions for improved multidisciplinary cooperation.

Patients and professionals in collaborative testing of a web-based tool for integrated care: an evaluation study.

Since 2001, patients in Norway with long-term, complex needs for care have had a legal right to an "individual care plan", intended to increase efficiency and quality in health and social services, as well as patient involvement. Commonly, a responsible group is established to manage the planning process. A web-based application was developed and tested for three years in groups including both patients and professionals. Data were collected through questionnaires, interviews, project documentation and field notes. The findings showed that iterative testing improved usability. Participants expressed confidence in the online access and their enhanced control of planning and documentation. Testing in real-life environments added valuable and unforeseen information. It also showed that technical and organizational aspects influenced each other, and should not be considered separately. Despite the successful testing and improvement of the application, some participants and groups did not feel comfortable using it. Further research will be undertaken to address barriers to participation.