Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial
BackgroundInformal 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...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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JMIR Publications
2022-05-01
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| Series: | JMIR Research Protocols |
| Online Access: | https://www.researchprotocols.org/2022/5/e33023 |
| _version_ | 1797735050016456704 |
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| author | Clare Wilding Debra Morgan Jennene Greenhill David Perkins Megan E O'Connell Michael Bauer Jane Farmer Catherine Morley Irene Blackberry |
| author_facet | Clare Wilding Debra Morgan Jennene Greenhill David Perkins Megan E O'Connell Michael Bauer Jane Farmer Catherine Morley Irene Blackberry |
| author_sort | Clare Wilding |
| collection | DOAJ |
| description |
BackgroundInformal 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.
ObjectiveThis 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.
MethodsA 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.
ResultsBetween 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.
ConclusionsThe 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 RegistrationAustralian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf
International Registered Report Identifier (IRRID)RR1-10.2196/33023 |
| first_indexed | 2024-03-12T12:53:25Z |
| format | Article |
| id | doaj.art-48abe03eaf5b470680fb75535038ef60 |
| institution | Directory Open Access Journal |
| issn | 1929-0748 |
| language | English |
| last_indexed | 2024-03-12T12:53:25Z |
| publishDate | 2022-05-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Research Protocols |
| spelling | doaj.art-48abe03eaf5b470680fb75535038ef602023-08-28T21:48:10ZengJMIR PublicationsJMIR Research Protocols1929-07482022-05-01115e3302310.2196/33023Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled TrialClare Wildinghttps://orcid.org/0000-0003-2467-4264Debra Morganhttps://orcid.org/0000-0002-6344-6822Jennene Greenhillhttps://orcid.org/0000-0001-8325-2139David Perkinshttps://orcid.org/0000-0001-9739-7339Megan E O'Connellhttps://orcid.org/0000-0001-6159-4322Michael Bauerhttps://orcid.org/0000-0002-5403-0227Jane Farmerhttps://orcid.org/0000-0003-1730-2622Catherine Morleyhttps://orcid.org/0000-0003-4077-8338Irene Blackberryhttps://orcid.org/0000-0003-4482-4936 BackgroundInformal 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. ObjectiveThis 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. MethodsA 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. ResultsBetween 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. ConclusionsThe 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 RegistrationAustralian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf International Registered Report Identifier (IRRID)RR1-10.2196/33023https://www.researchprotocols.org/2022/5/e33023 |
| spellingShingle | Clare Wilding Debra Morgan Jennene Greenhill David Perkins Megan E O'Connell Michael Bauer Jane Farmer Catherine Morley Irene Blackberry Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial JMIR Research Protocols |
| title | Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial |
| title_full | Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial |
| title_fullStr | Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial |
| title_full_unstemmed | Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial |
| title_short | Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial |
| title_sort | web based technologies to support carers of people living with dementia protocol for a mixed methods stepped wedge cluster randomized controlled trial |
| url | https://www.researchprotocols.org/2022/5/e33023 |
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