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      PROCare4Life lessons learned

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          Abstract

          PeRsOnalised Integrated CARE Solution for Elderly (PROCare4Life) was an EU-funded project that ran from January 2020 until June 2023, whose focus was to further develop and integrate previous ICT solutions developed by several previous EU-funded projects into a unique modular system able to support the autonomy and empowerment and to increase the Quality of Life (QoL) of elderly people living with Parkinson’s, Alzheimer’s, or similar dementia, having also tested the system for elderly people living with comorbidities. This article focuses on the methodology and results used to identify the internal lessons learned. PROCare4Life was developed using a codesign approach involving more than 2,000 participants whose input has been listened to and transformed into valuable changes of the system and also into lessons learned included in this case study report. Since the beginning of the implementation of PROCare4Life, there has been a commitment to make invisible knowledge visible through open discussion and including our lessons learned in each of our deliverables. In the last six months of implementation, qualitative research has been implemented by the PROCare4Life consortium to identify and select our most relevant challenges and recommendations for future projects and initiatives. PROCare4Life was highly impacted by the COVID-19 pandemic, and it is acknowledged in the lessons learned. However, the consortium has focused on the recommendations that could be more valuable for ordinary implementation of future projects and initiatives developing eHealth tools for elderly citizens living with conditions that might affect their cognitive or mobility capacities.

          Plain language summary

          PeRsOnalised Integrated CARE Solution for Elderly (PROCare4Life) was an EU-funded project that ran from January 2020 until June 2023, aiming at improving the quality of life of older people living with Parkinson’s, Alzheimer’s or other dementia using ICT technologies. The term implementation refers to the process of putting a plan or idea into action. It is a complex process that involves multiple stages, including planning, execution, and evaluation. Implementation research is a growing field of health research that aims to study the factors that affect the implementation of health policies, programs, and practices. It can help identify the best strategies for introducing potential solutions into a health system or promoting their large-scale use and sustainability. i For PROCare4Life, when using the term implementation it covers all the stages, including ideation and design phases, although focusing on the pilot 3 iterative codesign and testing of the system. Using daily life devices such as smartphones and smart watches, more than 2,000 people have contributed to co-creating PROCare4Life. The three profiles focused on were older people living with Parkinson’s, Alzheimer’s or other dementia, their main carers and their healthcare professionals, with an ICT system providing direct communication and allowing them to share their health status. Along the journey to develop PROCare4Life, our European consortium has learned many things that we have internally investigated and reported in this article. We have identified 20 challenges and 41 recommendations. We hope that our lessons learned might be inspiring and valuable for others, particularly future projects and initiatives developing eHealth tools for elderly EU citizens living with different conditions that might affect their cognitive or mobility capabilities.

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          A Practical Iterative Framework for Qualitative Data Analysis

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            Learning to Do Qualitative Data Analysis: A Starting Point

            Given the vast and diverse qualitative analytic landscape, what might be a generative starting point for researchers who desire to learn how to produce quality qualitative analyses? This question is particularly relevant to researchers new to the field and practice of qualitative research and instructors and mentors who regularly introduce students to qualitative research practices. In this article, we seek to offer what we view as a useful starting point for learning how to do qualitative analysis. We begin by discussing briefly the general landscape of qualitative research methodologies and methods. To contextualize our suggestions, we review the qualitative analytic practices commonly used within human resource development (HRD). Following this, we describe thematic analysis in more detail, including why we believe it is a particularly useful analytic approach to consider when first learning about qualitative analysis. We share seven common practices or important considerations for carrying out a thematic analysis and conclude by highlighting key considerations for assuring quality when conducting a thematic analysis.
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              Strategies to improve engagement of ‘hard to reach’ older people in research on health promotion: a systematic review

              Background This systematic review aimed to identify facilitators, barriers and strategies for engaging ‘hard to reach’ older people in research on health promotion; the oldest old (≥80 years), older people from black and minority ethnic groups (BME) and older people living in deprived areas. Methods Eight databases were searched to identify eligible studies using quantitative, qualitative, and mixed research methods. Using elements of narrative synthesis, engagement strategies, and reported facilitators and barriers were identified, tabulated and analysed thematically for each of the three groups of older people. Results Twenty-three studies (3 with oldest-old, 16 with BME older people, 2 within deprived areas, 1 with both oldest-old and BME, 1 with both BME and deprived areas) were included. Methods included 10 quantitative studies (of which 1 was an RCT), 12 qualitative studies and one mixed-methods study. Facilitators for engaging the oldest old included gaining family support and having flexible sessions. Facilitators for BME groups included building trust through known professionals/community leaders, targeting personal interests, and addressing ethnic and cultural characteristics. Among older people in deprived areas, facilitators for engagement included encouragement by peers and providing refreshments. Across all groups, barriers for engagement were deteriorating health, having other priorities and lack of transport/inaccessibility. Feeling too tired and lacking support from family members were additional barriers for the oldest old. Similarly, feeling too tired and too old to participate in research on health promotion were reported by BME groups. Barriers for BME groups included lack of motivation and self-confidence, and cultural and language differences. Barriers identified in deprived areas included use of written recruitment materials. Strategies to successfully engage with the oldest old included home visits and professionals securing consent if needed. Strategies to engage older people from BME groups included developing community connections and organising social group sessions. Strategies to engage with older people in deprived areas included flexibility in timing and location of interventions. Conclusions This review identified facilitators, barriers and strategies for engaging ‘hard to reach’ older people in health promotion but research has been mainly descriptive and there was no high quality evidence on the effectiveness of different approaches.
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                Author and article information

                Contributors
                Role: ConceptualizationRole: Data CurationRole: Formal AnalysisRole: InvestigationRole: MethodologyRole: SupervisionRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: ConceptualizationRole: Data CurationRole: Formal AnalysisRole: InvestigationRole: SupervisionRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: ConceptualizationRole: Formal AnalysisRole: InvestigationRole: MethodologyRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: InvestigationRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: InvestigationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: ConceptualizationRole: Data CurationRole: Formal AnalysisRole: InvestigationRole: MethodologyRole: SupervisionRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: Formal AnalysisRole: InvestigationRole: MethodologyRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: ConceptualizationRole: InvestigationRole: MethodologyRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: ConceptualizationRole: Formal AnalysisRole: InvestigationRole: MethodologyRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: InvestigationRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: InvestigationRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: Formal AnalysisRole: InvestigationRole: ValidationRole: VisualizationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Role: InvestigationRole: ValidationRole: Writing – Original Draft PreparationRole: Writing – Review & Editing
                Journal
                Open Res Eur
                Open Res Eur
                Open Research Europe
                F1000 Research Limited (London, UK )
                2732-5121
                22 March 2024
                2023
                : 3
                : 147
                Affiliations
                [1 ]INTERNATIONAL FOUNDATION FOR INTEGRATED CARE, The Base B Evert van de Beekstraat 1-104 Schiphol Airport, 1118 CBL, The Netherlands
                [2 ]Casa di Cura Igea, Milan, Lombardy, Italy
                [3 ]Association Parkinson Madrid, Madrid, 28014, Spain
                [4 ]CNS - Campus Neurológico, Torres Vedras, 2560, Portugal
                [5 ]KINETIKOS, Lisbon, 1700-093, Portugal
                [6 ]University of Münster, Münster, 48149, Germany
                [7 ]University Hospital Bonn, Bonn, 53127, Germany
                [8 ]Maastricht University, Maastricht, 6211 LK, The Netherlands
                [9 ]Universidad Politécnica Madrid, Madrid, 28040, Spain
                [1 ]Servicio de Neurología, Hospital Universitario 12 de Octubre, Madrid, Spain
                [1 ]Departamento de Psicología Biológica y de la Salud, Autonomous University of Madrid, Madrid, Community of Madrid, Spain
                [1 ]Servicio de Neurología, Hospital Universitario 12 de Octubre, Madrid, Spain
                INTERNATIONAL FOUNDATION FOR INTEGRATED CARE, Spain
                [1 ]Departamento de Psicología Biológica y de la Salud, Autonomous University of Madrid, Madrid, Community of Madrid, Spain
                INTERNATIONAL FOUNDATION FOR INTEGRATED CARE, Spain
                Author notes

                No competing interests were disclosed.

                Competing interests: No competing interests were disclosed.

                Competing interests: No competing interests were disclosed.

                Competing interests: No competing interests were disclosed.

                Competing interests: No competing interest

                Competing interests: No competing interests were disclosed.

                Competing interests: No competing interests

                Author information
                https://orcid.org/0000-0002-0473-8817
                https://orcid.org/0000-0002-1720-2560
                https://orcid.org/0000-0001-6676-9742
                https://orcid.org/0000-0002-7946-1330
                https://orcid.org/0000-0001-6728-2581
                https://orcid.org/0000-0002-3903-449X
                Article
                10.12688/openreseurope.16304.2
                11019287
                38629060
                29c1157f-93fc-4059-b8be-8841a43124bb
                Copyright: © 2024 Gangas P et al.

                This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 25 January 2024
                Funding
                Funded by: Horizon Europe Framework Programme
                Award ID: 875221
                This research has received funding from the EU Commission. PROCare4Life has been funded by Horizon 2020 Grant Agreement number: 875221.
                The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Case Study
                Articles

                ehealth; integrated care; lessons learned; digital technologies; people centred codesign; parkinson’s; alzheimer’s,dementia

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