Literature DB >> 33433394

Investigating Users' and Other Stakeholders' Needs in the Development of a Personalized Integrated Care Platform (PROCare4Life) for Older People with Dementia or Parkinson Disease: Protocol for a Mixed Methods Study.

Mona Ahmed1, Mayca Marín2, Raquel Bouça-Machado3, Daniella How1, Elda Judica4, Peppino Tropea4, Ellen Bentlage1, Michael Brach1.   

Abstract

BACKGROUND: Dementias-including Alzheimer disease-and Parkinson disease profoundly impact the quality of life of older population members and their families. PROCare4Life (Personalized Integrated Care Promoting Quality of Life for Older Adults) is a European project that recognizes the benefit of technology-based integrated care models in improving the care coordination and the quality of life of these target groups. This project proposes an integrated, scalable, and interactive care platform targeting older people suffering from neurodegenerative diseases, their caregivers, and socio-health professionals. PROCare4Life adopts a user-centered design approach from the early stage and throughout platform development and implementation, during which the platform is designed and adapted to the needs and requirements of all the involved users.
OBJECTIVE: This paper presents the study protocol for investigating users' needs and requirements regarding the design of the proposed PROCare4Life platform.
METHODS: A mixed qualitative and quantitative study design is utilized, including online surveys, interviews, and workshops. The study aimed to recruit approximately 200 participants, including patients diagnosed with dementia or Parkinson disease, caregivers, socio-health professionals, and other stakeholders, from five different European countries: Germany, Italy, Portugal, Romania, and Spain.
RESULTS: The study took place between April and September 2020. Recruitment is now closed, and all the data have been collected and analyzed in order to be used in shaping the large-scale pilot phase of the PROCare4Life project. Results of the study are expected to be published in spring 2021.
CONCLUSIONS: This paper charts the protocol for a user-centered design approach at the early stage of the PROCare4Life project in order to shape and influence an integrated health platform suitable for its intended target group and purpose. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/22463. ©Mona Ahmed, Mayca Marín, Raquel Bouça-Machado, Daniella How, Elda Judica, Peppino Tropea, Ellen Bentlage, Michael Brach. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 12.01.2021.

Entities:  

Keywords:  dementia; health care technologies; integrated care; neurodegenerative diseases; older adults; user-centered design

Year:  2021        PMID: 33433394      PMCID: PMC7837994          DOI: 10.2196/22463

Source DB:  PubMed          Journal:  JMIR Res Protoc        ISSN: 1929-0748


  27 in total

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Journal:  Psychiatr Hung       Date:  2017

4.  The effectiveness of a telephone support program for caregivers of frail older adults.

Authors:  Tamara L Smith; Ronald W Toseland
Journal:  Gerontologist       Date:  2006-10

5.  Use of the Zarit scale for assessing caregiver burden and collapse in caregiving at home in dementias.

Authors:  Ana M Gort; Maria Mingot; Xavier Gomez; Teodoro Soler; Gerard Torres; Oscar Sacristán; Santiago Miguelsanz; Francisco Nicolas; Ana Perez; Mariano de Miguel; Jacinto Cabau
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6.  Developing medical device technologies from users' perspectives: a theoretical framework for involving users in the development process.

Authors:  Syed Ghulam Sarwar Shah; Ian Robinson; Sarmad AlShawi
Journal:  Int J Technol Assess Health Care       Date:  2009-10       Impact factor: 2.188

7.  The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey.

Authors:  Claudia Miranda-Castillo; Bob Woods; Martin Orrell
Journal:  BMC Health Serv Res       Date:  2013-02-04       Impact factor: 2.655

Review 8.  SF-36 total score as a single measure of health-related quality of life: Scoping review.

Authors:  Liliane Lins; Fernando Martins Carvalho
Journal:  SAGE Open Med       Date:  2016-10-04

9.  What do we require from surveillance technology? A review of the needs of people with dementia and informal caregivers.

Authors:  Yvette Vermeer; Paul Higgs; Georgina Charlesworth
Journal:  J Rehabil Assist Technol Eng       Date:  2019-12-02

Review 10.  What works in implementation of integrated care programs for older adults with complex needs? A realist review.

Authors:  Maritt Kirst; Jennifer Im; Tim Burns; G Ross Baker; Jodeme Goldhar; Patricia O'Campo; Anne Wojtak; Walter P Wodchis
Journal:  Int J Qual Health Care       Date:  2017-10-01       Impact factor: 2.038

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