Development of a Best Practice Guidance on Online Peer Support for People with Young-Onset Dementia
Abstract
:1. Introduction
- To provide people with YOD with evidence-based, relevant, and accessible information about what online peer support is and how it could help them;
- To provide providers of online peer support with guidelines on how to optimize the positive outcomes for people with YOD; and
- To provide healthcare professionals with a concise and accessible tool for signposting.
2. Materials and Methods
2.1. Developing Draft 1 of the Best Practice Guidance
2.1.1. Systematic Literature Research
2.1.2. Focus Groups
2.1.3. Online Survey
2.1.4. Individual Interviews
2.1.5. Consultation with the European Working Group of People with Dementia (EWGPWD)
2.2. Developing Draft 2 and the Final Version
3. Results
3.1. Part 1: Guidance for People with YOD on Engaging with Online Peer Support
- What different types of online peer support are there?
- What can I expect from online peer support?
- How can online peer support help me?
- How can I overcome technological challenges?
- Where can I find more information?
3.1.1. What Different Types of Online Peer Support Are There?
3.1.2. What Can I Expect from Online Peer Support?
3.1.3. How Can Online Peer Support Help Me?
3.1.4. How Can I Overcome Technological Challenges?
3.1.5. Where Can I Find More Information?
- I want to find a peer support group.
- I want to learn from other people’s experiences but not be part of a group.
- I want more information about young-onset dementia.
3.2. Guidelines for Facilitators
3.2.1. Peer Support in Video Meetings
3.2.2. Peer Support in Text-Based Platforms
3.3. Feedback from People with YOD
“It is full of good info. It probably took me 12 months to find a lot of the info but with this guide it would have been a lot quicker and easier”.
3.4. Feedback from Professionals
3.5. Feedback from the Research Team
4. Discussion
4.1. Limitations
4.2. Recommendations for Future Research
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Best Practice Guidance Part 1: Engaging in Online Peer Support for People with YOD | |
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Section | Summary |
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| Links to further information if people want the following:
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Best Practice Guidance Part 1: Engaging in Online Peer Support for People with YOD | |
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Section | Summary |
Peer support in video meetings | |
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Peer support in text-based platforms |
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Best Practice Guidance Part 1 for People with YOD on Engaging with Online Peer Support | ||||
Section | Source | Key Points Draft 1 | PPI Feedback on Draft 1 | Changes for Draft 2 |
What different types of online peer support are there? |
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| From people with YOD: Bullying or conflict, impact on mental health. | PPI In the ‘Safety first!’ box: Be mindful of how online peer support affects your mental health. If you notice a negative impact, reach out to the group’s facilitator or moderator. You can also take a break from it or try finding another group. You can also unfollow someone that has a negative impact. |
What can I expect from online peer support? | Focus groups; interviews |
| No feedback | No changes |
How can online peer support help me? |
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| No feedback | No changes |
How can I overcome technological challenges? | Focus groups, interviews. | Question-and-answer format of challenges people with YOD experienced and how they coped with them. | No feedback | No changes |
Where can I find more information? |
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| No feedback | No changes |
Best Practice Guidance Part 2 for Facilitators | ||||
Section | Source | Key Points Draft 1 | PPI Feedback on Draft 1 | Changes for Draft 2 |
Peer support in video meetings |
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| From people with YOD:
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Peer support in text-based platforms |
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| From professionals: Role of host/moderator, welcoming people | Under ‘Your role as a moderator/facilitator’: Welcome new members and explain how the group works. |
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© 2024 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Loseto-Gerritzen, E.V.; McDermott, O.; Orrell, M. Development of a Best Practice Guidance on Online Peer Support for People with Young-Onset Dementia. Behav. Sci. 2024, 14, 746. https://doi.org/10.3390/bs14090746
Loseto-Gerritzen EV, McDermott O, Orrell M. Development of a Best Practice Guidance on Online Peer Support for People with Young-Onset Dementia. Behavioral Sciences. 2024; 14(9):746. https://doi.org/10.3390/bs14090746
Chicago/Turabian StyleLoseto-Gerritzen, Esther Vera, Orii McDermott, and Martin Orrell. 2024. "Development of a Best Practice Guidance on Online Peer Support for People with Young-Onset Dementia" Behavioral Sciences 14, no. 9: 746. https://doi.org/10.3390/bs14090746