| Phase: |
Workpackage |
| Theme: | Understanding the Needs of Caregivers (WP2 NEEDS-CG) |
| Type: | Research |
| Status: | Ended |
| Start Date: | 2017-08-30 |
| End Date: | 2018-09-30 |
| Project Leader |
| Fast, Janet |
Project Overview
Caregiving can be deeply disorienting as it involves an array of complex decisions and actions informed by limited knowledge. Moving beyond clinical practice and research, how do we help caregivers navigate the complexity of care while deriving real-world evidence about what works and what derails the care journey? Huddol is the first cross-disease, cross-platform, bilingual social health network that aims to help caregivers navigate the care journey by drawing on the real-world experience and insights of caregivers and health-care experts. The experience on Huddol starts with helping caregivers define their situation and needs. Based on those active data inputs, Huddol builds a custom network of care around the caregiver, linking them to those best equipped to help. Our project involves accelerating the technical capability of Huddol through the integration of artificial intelligence into the platform. AI will enhance the way we connect caregivers to each other, to health-care providers and to supports, while deriving deep, real-world data, and evidence about how we optimize the care experience. The inclusion of machine based learning into Huddol means that we can analyze and distill not only structured, but unstructured data. Effectively, we will be able to make sense out of a flow of caregiving experiences that, for the normal human brain, would be impossible to distill, interpret and compare. Our project will not only have significant social impact and improve the ways caregivers manage their health and the health of the person in their care, but it will also drive new areas of research, product and service development never before considered or imagined.
Outputs
| Title |
Category |
Date |
Authors |
| Caregivers speak up: an in-depth online survey reveals their concerns, hope and dreamsAndrew Magnaye, doctoral HQP, was interviewed for an YouAreUnLTD article. The article, written by Jane Mundy, was published online on January 30, 2019. The interview and subsequent article was prompted by Andrew's winning Science Slam presentation at the AGE-WELL 2018 conference in Vancouver. | KTEE - Knowledge Mobilization | 2019-01-30 | Andrew Magnaye |
| Technology's impact 'mixed' for unpaid caregiversArticle in Folio, a University of Alberta online publication, March 28, 2018. Technology can be helpful to people caring for loved ones, but it can also be complicated and costly—something UAlberta researchers want to remedy by consulting caregivers on what they need. University of Alberta | KTEE - Knowledge Mobilization | 2018-03-28 | "Bev Betkowski", Jacquie Eales, Janet Fast |
| From ‘Needs’ to ‘Goals’: Evolving the User Centered Design process for technology supporting family caregiversIn this paper we describe adjustments to a particular software design process aimed at developing technology to support family caregivers. Our case study focuses on the co-design of a smartphone application to assist caregivers in managing and coping with the work of caring for older adults. We use the specifics of this case study to shed light on the technology development benefits of framing user-centered design (UCD) through caregivers’ goals rather than their needs. We show how this re-framing of the co-design process away from a deficit, or needs-based approach and towards a strength, or goal-oriented approach is central to developing technologies that caregivers are more likely to commit time and resources to learning and integrating into their lives. University of Leicester, Johns Hopkins Medicine, University of Calgary, University of Alberta, University of British Columbia | Scientific Excellence - Advancing Knowledge | 2018-07-31 | Myles Leslie, Jacquie Eales, Janet Fast, Ben Mortenson, Oladele Atoyebi, Akram Mahani |
| Seeking resilience: the care capacity goals of family carers and the role of technology in achieving themAbstract
Background
As global populations age, governments have come to rely heavily on family carers (FCs) to care
for older adults and reduce the demands made of formal health and social care systems. Under
increasing pressure, FCs’ resilience and the sustainability of their unpaid care work have become
pressing issues. Using qualitative data, this paper explores FCs’ care-related work goals, and
describes how those goals do, or do not, link to technology and the idea of resilience.
Methods
We employed a sequential mixed-method approach using focus groups followed by an online
survey about FCs’ goals. We held 10 focus groups and recruited 25 FCs through a mix of
convenience and snowball sampling strategies. Carer organizations helped recruit 599 FCs from
across Canada to complete an online survey. Participants’ responses to an open-ended question
in the survey were included in our qualitative analysis. An inductive approach was employed
using qualitative thematic content analysis methods to examine and interpret the resulting data.
We used NVIVO 12 software for data analysis.
Results
We identified two care quality improvement goals of FCs providing care to older adults:
enhancing and safeguarding their caregiving capacity. To enhance their capacity to care, FCs
sought: 1) foreknowledge about their care recipients’ changing condition, and 2) improved
navigation of existing support systems. To safeguard their own wellbeing, and so to preserve
their capacity to care, FCs sought to develop coping strategies as well as opportunities for
mentorship and socialization.
Conclusions
We conclude that a paradigm shift is needed to reframe caregiving from a current deficit frame
focused on failures and limitations (burden of care) towards a more empowering frame
(sustainability and resiliency). The fact that FCs are seeking strategies to enhance and safeguard
their capacities to provide care means they are approaching their unpaid care work from the
perspective of resilience. Their goals and technology suggestions imply a shift from
understanding care as a source of ‘burden’ towards a more ‘resilient’ and ‘sustainable’ model of
caregiving. Our case study findings show that technology can assist in fostering this resiliency
but that it may well be limited to the role of an intermediary that connects FCs to information,
supports and peers. University of Leicester, Johns Hopkins Medicine, University of Calgary, University of Alberta | Scientific Excellence - Advancing Knowledge | 2019-10-31 | Myles Leslie, Robin Gray, Jacquie Eales, Janet Fast, Andrew Magnaye, Akram Mahani |
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