Creating and evaluating a Virtual Community of Practice for caregivers across Canada to support learning and interactions.
Community of Practice
A community of practice consists of a group of people who share common challenges and want to enhance their knowledge through regular interactions [1]. Characteristics of a community of practice include mutual engagement, shared repertoire, and joint enterprise [2]. Mutual engagement consists of the principle that members of a community of practice are part of a negotiated activity. Shared repertoire refers to a pool of resources (e.g., website, guides, video clips, discussion forums) made available to members of a community of practice and opportunities for members to contribute to creating and revising resources. A joint enterprise recognizes that collective understanding of the purpose of a community of practice is key to its success [2,3].
A Virtual Community of Practice (VCoP) consisting of an internet-based intervention can enable higher levels of participation among members related to knowledge sharing, quick dissemination of ideas, and regular emotional support compared to in person community of practices [4]. To our knowledge there has only been one study exploring the implementation and evaluation of a VCoP to support caregivers of persons with dementia through a mobile application [5]. The design of that VCoP did not involve persons with lived experience such as persons living with dementia and caregivers. An important element that should be included in a VCoP is supporting caregivers to deliver meaningful activities for persons with dementia. Supporting caregivers to provide social and stimulating activities for persons living with dementia can help to ensure the well-being of both persons with dementia and caregivers, reduce responsive behaviours, and enhance social relationships [6,7]. Responsive behaviours are expressed by people with dementia who experience difficulties with language and communication. They are defined as words, sounds, behaviours, or actions used to make their needs or concerns known to others (e.g., yelling, hitting, repetitive questioning). There is a growing international recognition that a psychosocial program called Namaste Care is suitable to be delivered by caregivers of people with dementia [8]. The delivery of an adapted version of this program by caregivers will be supported through the VCoP.
Virtual Community of Practice Components
The VCoP is the intervention evaluated in the study and includes the following four components:
(a) a user-friendly website;
(b) online resources (e.g., toolkit, video clips, evidence-based strategies);
(c) virtual training and support for caregivers to deliver Namaste Care for persons with dementia; and
(d) bi-weekly virtual discussion forums for caregivers.
With regards to the website and online resources this will be developed in collaboration with persons with dementia and caregiver research partners. Content included on the VCoP website will be determined by the learning needs of caregivers and experiences of research partners. The format of bi-weekly virtual discussion forums (e.g., length, topics, structure) for caregivers will also be determined by research partners. One of the educational needs that will be addressed in the VCoP is supporting caregivers to deliver meaningful activities for persons with dementia through the Adapted Namaste Care Program. In the implementation and evaluation of the VCoP phase caregivers will receive training in delivering Namaste Care and be provided with a Namaste Care Toolbox that includes specific items tailored to persons with dementia and caregivers to be used for the 3-month study period.
In our previous study on Namaste Care standard items of the Toolbox included a training guide, Namaste Care activities checklist forms, a plastic storage container, an aromatherapy diffuser with lavender essential oil, hand and/or body lotion, a squeeze ball, a lip balm, and a microwavable magic bean hot and cold compress. In addition to standard items caregivers received items based on the personal interests of each person with dementia such as dolls, face cream, hairbrushes, fleece or textured blankets, manicure sets, jigsaw puzzles, wordsearch puzzles, light-up balls, blankets, arts and crafts kits, painting supplies, granola bars, and/or pudding. Some caregivers also used items that they already had in their possession to deliver the program sessions such as trivia games or gardening supplies [8]. Caregivers will be supported throughout the 3-month study period through bi-weekly virtual discussion forums to discuss success stories, strategies, and challenges in caregiving. Caregivers will be joined by other caregivers participating in the study as well as Marie-Lee who will serve as a moderator.
Why is this research needed?
Despite the growing numbers of family and friend caregivers supporting persons living with dementia across Canada, most caregivers receive very little preparation and support in taking on the caregiver role. As a result, caregivers experience stress, depression, poor physical health, and lack of confidence in supporting persons living with dementia. Our team will tackle these issues by designing and implementing a national VCoP which includes an interactive website, an online toolkit, and discussion forums for caregivers. Our research will move the mark in dementia by producing recommendations for a VCoP from the input of persons living with dementia and caregivers and potentially improving outcomes for caregivers related to quality of life, caregiving beliefs, confidence, and stress. In our area of research, we see more trends towards making it easier for caregivers to access education and support virtually and greater recognition of the importance of improving the quality of life of caregivers and persons living with dementia through practical approaches.
Phase 1: Building a Virtual Community of Practice Through Co-Design
People with lived experience will have a crucial role in informing supports and information required to enhance the quality of life of persons living with dementia and family and friend caregivers. Persons living with dementia and caregivers will become research partners in co-designing the VCoP. As research partners they will be fully supported by providing them with training in using applications for videoconferencing and reimbursement for respite if they are active caregivers. We will implement the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework [9] in working with persons living with dementia and caregivers to uphold essential guiding principles consisting of inclusiveness, support, mutual-respectful, and co-building. We will hold separate virtual design workshops for persons living with dementia and caregivers so that both groups can freely express themselves. Research partners will be asked to review the VCoP website and provide recommendations to improve the site based on the language used, the layout, and ease of navigating the website. They will be asked to provide suggestions on what kinds of demonstrative video clips and information would be helpful to support the delivery of social and engaging activities for persons with dementia. Research partners will be asked to provide insight on the length of time, number of people included per group, and the topics that will be discussed in online discussion forums. Research partners will complete surveys to rate the website and their engagement in the study as well as short follow-up interview. Persons living with dementia and caregivers will be provided with opportunities to be an author on manuscripts and presenters at conferences and meetings.
Using a train-the-trainer approach, Marie-Lee will work with Alzheimer Society Educators (i.e., skilled professionals in delivering dementia education) of provincial and local Alzheimer Societies who will help to train caregivers who are clients of the Alzheimer Society to deliver Namaste Care for persons living with dementia. Educators will have access to the online Namaste Care toolkit and contact information if they have any questions or concerns. Educators will be asked to complete surveys regarding their training experiences. Caregivers will use the adapted Namaste Care Program for 3 months and be supported to engage and deliver the program through regular discussion forums with other caregivers occurring bi-weekly. A Namaste Care Toolbox will be provided to caregivers at no cost. They will be asked to keep track of activities completed using the Namaste Care Activities checklist and complete surveys before and after 3 months has passed. Caregivers will participate in follow-up interviews at the end of the study to discuss their experience.
Phase 2: Implementation and Evaluation of the Virtual Community of Practice
Current Opportunities
We are currently seeking research partners to participate in Phase 2 of the study.
References
[1] Wenger, E., McDermott, R. A., & Snyder, W. (2002). Cultivating communities of practice: A guide to managing knowledge. Harvard business press.
[2] Wenger, E. (1998). Communities of practice: Learning, meaning, and identity, Cambridge: Cambridge University Press.
[3] Rogers, J. (2000). Communities of practice: A framework for fostering coherence in virtual learning communities. Journal of Educational Technology & Society, 3(3), 384-392.
[4] Koh, J., & Kim, Y. G. (2004). Knowledge sharing in virtual communities: An e-business perspective. Expert Systems with Applications, 26(2), 155-166.
[5] Romero-Mas, M., Ramon-Aribau, A., Souza, D. L. B. D., Cox, A. M., & Gómez-Zúñiga, B. (2021). Improving the Quality of Life of Family Caregivers of People with Alzheimer’s Disease through Virtual Communities of Practice: A Quasi experimental Study. International Journal of Alzheimer’s Disease, 1-10.
[6] Roland, K. P., & Chappell, N. L. (2015). Meaningful activity for persons with dementia: Family caregiver perspectives. American Journal of Alzheimer's Disease & Other Dementias®, 30(6), 559-568.
[7] Simard, J., & Volicer, L. (2010). Effects of Namaste Care on residents who do not benefit from usual activities. American Journal of Alzheimer's Disease & Other Dementias®, 25(1), 46-50.
[8] Yous, M. L., Ploeg, J., Kaasalainen, S., McAiney, C., & Fisher, K. (2022). Feasibility, acceptability, and preliminary effectiveness of the adapted Namaste Care program delivered by caregivers of community-dwelling older persons with moderate to advanced dementia: A mixed methods feasibility study. BMC Geriatrics, 22(1), 1-26.
[9] Canadian Institutes of Health Research. (2019). Strategy for patient-oriented research-patient engagement framework. Retrieved from http://www.cihr-irsc.gc.ca/e/48413.html