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Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial

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posted on 21.06.2022, 06:41 authored by Clare WildingClare Wilding, Debra Morgan, Jennene Greenhill, David Perkins, Megan E O'Connell, Michael BauerMichael Bauer, Jane Farmer, Catherine Morley, Irene BlackberryIrene Blackberry
BACKGROUND: Informal carers play a significant role in supporting people living with dementia; however, carers in rural areas are often isolated, with limited access to support services. Although dementia-friendly communities provide valued support for carers, access to them is limited as they are few and geographically dispersed. OBJECTIVE: This study's aim was to increase support and services for rural informal carers of people living with dementia by using information and communication technologies accessed through an integrated website and mobile app-the Verily Connect app. The objective of this protocol is to detail the research design used in a complex study that was situated in a challenging real-world setting integrating web-based and on-ground technology and communication. Therefore, it is anticipated that this protocol will strengthen the research of others exploring similar complex concepts. METHODS: A stepped-wedge, open-cohort cluster randomized controlled trial was conducted to implement Verily Connect across 12 rural Australian communities. The Verily Connect intervention delivered web-based, curated information about dementia, a localized directory of dementia services and support, group and individual chat forums, and peer support through videoconference. During the implementation phase of 32 weeks, Verily Connect was progressively implemented in four 8-weekly waves of 3 communities per wave. Usual care, used as a comparator, was available to carers throughout the study period. Participants and researchers were unblinded to the intervention. There were 3 cohorts of participants: carers, volunteers, and staff; participants were recruited from their communities. The primary outcome measure was perceived carer social support measured using the Medical Outcomes Study-Social Support Survey. Volunteers and staff provided feedback on their participation in Verily Connect as qualitative data. Qualitative data were collected from all cohorts of participants through interviews and focus groups. Process evaluation data were collected through interviews and memos written by research staff. Data on the costs of implementing Verily Connect were collected by the research team members and evaluated by a health economist. RESULTS: Between August 2018 and September 2019, a total of 113 participants were recruited. There were 37 (32.7%) carers, 39 (34.5%) volunteers, and 37 (32.7%) health service staff. The study was complex because of the involvement of multiple and varied communities of carers, volunteers, health service staff, and research team members originating from 5 universities. Web-based technologies were used as intervention strategies to support carers and facilitate the process of undertaking the study. CONCLUSIONS: The Verily Connect trial enabled the testing and further development of a web-based approach to increasing support for carers of people living with dementia across a diverse rural landscape in Australia. This protocol provides an example of how to conduct a pragmatic evaluation of a complex and co-designed intervention involving multiple stakeholders. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/33023.

Funding

The authors acknowledge Dr Margaret Winbolt, Dementia Training Australia and Australian Centre for Evidence Based Aged Care, La Trobe University, Australia, who also contributed to the conceptualization of the study. They acknowledge Dr Tshepo Rasekaba and Ms Kayla Royals, La Trobe University, Australia, for their technical contributions to the preparation of this manuscript. The authors acknowledge the Plural Agency, Melbourne, Victoria, Australia, for the graphic design and technical production of the Verily Connect app. This study was funded by the Department of Health, Australian Government, grant 4-4Z3E23H.

History

Publication Date

01/05/2022

Journal

JMIR Research Protocols

Volume

11

Issue

5

Article Number

e33023

Pagination

14p.

Publisher

JMIR Publications Inc.

ISSN

1929-0748

Rights Statement

© Clare Wilding, Debra Morgan, Jennene Greenhill, David Perkins, Megan E O'Connell, Michael Bauer, Jane Farmer, Catherine Morley, Irene Blackberry. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 19.05.2022. 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 https://www.researchprotocols.org, as well as this copyright and license information must be included.