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      Supporting the Process of Help-Seeking by Caregivers of Functionally Dependent Older Persons Through Electronic Health: Protocol for a Multicenter Co-Design


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          It is often only when the initial signs of exhaustion appear that caregivers first may engage in help-seeking behavior, but it is difficult for them to know which is the most appropriate formal service in their situation. Electronic health (eHealth) can support caregivers in keeping the older person they are caring for at home, but few eHealth tools designed for supporting the process of help-seeking by caregivers of functionally impaired older persons have been developed using a co-design approach.


          This paper aims to describe the protocol of a project that tries to assist caregivers to target their needs and those of the older person they support early in their help-seeking process, and guide them effectively to the formal service most appropriate for their situation. This project aims to answer the following questions: (1) What type of tool can better support caregivers to identify their needs and those of the older person they are caring for and then refer them to an appropriate formal service? and (2) What information should be found in such a tool?


          This study presents a description of the process of an ongoing multicenter research project based on a co-design approach, which includes 3 phases (1) identification of caregivers’ needs in terms of tools to support their help-seeking behavior, (2) development of a tool, and (3) evaluation of its usability.


          The project began in January 2016 with the ethics application for the 3 phases of the project. For phase 1, recruitment began in December 2016 and ended in September 2017. Phase 2 began in the spring of 2017 and ended in June 2018. All the co-design sessions have been completed. Phase 3 of the project will begin in September 2018.


          Although there are some challenges associated with this type of methodology, the methodology still remains relevant, as it involves future users in the development of a tool, which increases the chances that the tool will meet the users' needs.

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          Most cited references28

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          Caregiver burden among dementia patient caregivers: a review of the literature.

          To identify current evidence of factors influencing dementia-related caregiver burden (CB), describe patient and caregiver characteristics associated with CB, and describe evidence-based interventions designed to lessen the burden of caregiving. Comprehensive literature review of Cumulative Index of Nursing and Allied Health Literature, MEDLINE, and Psych Info was performed for the years 1996-2006 of peer-reviewed journals using keywords CB and dementia. Dementia caregiving has been associated with negative effects on caregiver health and early nursing home placement for dementia patients. Many factors influence the impact of the caregiving experience such as gender, relationship to the patient, culture, and personal characteristics. Although various interventions have been developed with the goal of alleviating CB, evidence suggests that individually developed multicomponent interventions including a diversity of services will decrease burden, improve quality of life, and enable caregivers to provide at-home care for longer periods prior to institutionalization. The ability to properly assess the dementia patient-caregiver dyad related to CB is critical to decreasing its negative physical and psychological health outcomes. Appropriately tailored interventions can improve the health and well-being of both caregiver and patient.
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            IBM computer usability satisfaction questionnaires: Psychometric evaluation and instructions for use

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              Review of health information technology usability study methodologies

              Usability factors are a major obstacle to health information technology (IT) adoption. The purpose of this paper is to review and categorize health IT usability study methods and to provide practical guidance on health IT usability evaluation. 2025 references were initially retrieved from the Medline database from 2003 to 2009 that evaluated health IT used by clinicians. Titles and abstracts were first reviewed for inclusion. Full-text articles were then examined to identify final eligibility studies. 629 studies were categorized into the five stages of an integrated usability specification and evaluation framework that was based on a usability model and the system development life cycle (SDLC)-associated stages of evaluation. Theoretical and methodological aspects of 319 studies were extracted in greater detail and studies that focused on system validation (SDLC stage 2) were not assessed further. The number of studies by stage was: stage 1, task-based or user–task interaction, n=42; stage 2, system–task interaction, n=310; stage 3, user–task–system interaction, n=69; stage 4, user–task–system–environment interaction, n=54; and stage 5, user–task–system–environment interaction in routine use, n=199. The studies applied a variety of quantitative and qualitative approaches. Methodological issues included lack of theoretical framework/model, lack of details regarding qualitative study approaches, single evaluation focus, environmental factors not evaluated in the early stages, and guideline adherence as the primary outcome for decision support system evaluations. Based on the findings, a three-level stratified view of health IT usability evaluation is proposed and methodological guidance is offered based upon the type of interaction that is of primary interest in the evaluation.

                Author and article information

                JMIR Res Protoc
                JMIR Res Protoc
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                April 2019
                26 April 2019
                : 8
                : 4
                : e11634
                [1 ] Department of Teaching and Learning Studies Laval University Quebec, QC Canada
                [2 ] School of Rehabilitation University of Sherbrooke Sherbrooke, QC Canada
                [3 ] Research Centre on Aging Centre Intégré Universitaire de Santé et de Services Sociaux de l’Estrie-Centre Hospitalier Universitaire de Sherbrooke Sherbrooke, QC Canada
                [4 ] School of Social Work and Criminology Laval University Quebec, QC Canada
                [5 ] Center of Excellence on Aging Quebec Quebec, QC Canada
                [6 ] Faculty of Nursing University of Montreal Montreal, QC Canada
                [7 ] Research Center University Hospital Center of Montreal Montreal, QC Canada
                [8 ] Université du Québec in Trois-Rivières Trois-Rivières, QC Canada
                [9 ] Interdisciplinary Center for Research in Rehabilitation and Social Integration Quebec, QC Canada
                [10 ] Department of Family Medicine and Emergency Medicine Laval University Quebec, QC Canada
                [11 ] Department of Rehabilitation Laval University Quebec, QC Canada
                Author notes
                Corresponding Author: Karine Latulippe karine.latulippe.3@ 123456ulaval.ca
                Author information
                ©Karine Latulippe, Manon Guay, Sophie Éthier, Andrée Sévigny, Véronique Dubé, Véronique Provencher, Valérie Poulin, Anick MC Giguere, Mélanie Tremblay, Maude Carignan, Dominique Giroux. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 26.04.2019.

                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 JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org.as well as this copyright and license information must be included.

                : 19 July 2018
                : 10 September 2018
                : 14 November 2018
                : 23 January 2019

                caregivers,aged,help-seeking behavior, community-based participatory research,ehealth,telemedicine


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