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Dr. Myles Leslie, Ph.D is a healthcare sociologist working at the intersection of policy and patient engagement. His focus is on understanding the social norms and cultural values that shape not only how policy is made, but how it is turned into action on the front lines of care. The specifics of patient engagement – how policy makers, administrators, clinicians, and patients themselves make this vague but potent concept real – are central to Dr. Leslie’s work. His AGE-WELL, NCE project centers on the experiences and priorities of caregivers, using a three-step engagement process to co-design a digital support tool for those family and friends who provide so much care to Canada’s elders. Dr. Leslie is thrilled to be working alongside community partners, technology providers, and colleagues inside and outside the NCE network to develop an app that addresses the real problems, and satisfies the norms and values, of caregivers.
His work has been published in a range of top tier journals, with a 2017 paper in Health Services Research garnering national media coverage in Canada, a BMJ Quality & Safety paper downloaded more than 6000 times, and another in Implementation Science named one of the top 3 most influential papers for the journal’s 2015 publishing year.
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From ‘Needs’ to ‘Goals’: Evolving the User Centered Design process for technology supporting family caregivers In 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.2.1 INToCARE, 2.4 ATforCC, 2.9-CAT, 2.11-SIP A1 University of Leicester, Johns Hopkins Medicine, University of Calgary, University of Alberta, University of British Columbia Scientific Excellence - Advancing Knowledge 2018-07-31 2.1 INToCARE, 2.4 ATforCC, 2.9-CAT, 2.11-SIP A1 Towards sustainable family care: Using goals to re-frame the user-centred design of technologies to support carers Technology has been identified as an important strategy in making caring sustainable. This article takes the design process for carer support technology as a lens on the divergent definitions that are in play when governments, technology developers and carers contemplate ‘sustainability’. We argue that a central impediment to finding a productive point of overlap among the three perspectives is a predominant focus on carers’ needs. We contrast this needs-based approach, and its focus on doing the tasks of care, with a goal-oriented approach focused on being in relationships. Reframing the conversation around goals is important to achieving truly sustainable caring.2.1 INToCARE, 2.4 ATforCC, 2.9-CAT University of Leicester, Johns Hopkins Medicine, University of Calgary, University of Alberta, University of British Columbia Scientific Excellence - Advancing Knowledge 2019-08-19 2.1 INToCARE, 2.4 ATforCC, 2.9-CAT Seeking resilience: the care capacity goals of family carers and the role of technology in achieving them Abstract
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.2.4 ATforCC, 2.9-CAT, 2.11-SIP A1 University of Leicester, Johns Hopkins Medicine, University of Calgary, University of Alberta Scientific Excellence - Advancing Knowledge 2019-10-31 2.4 ATforCC, 2.9-CAT, 2.11-SIP A1 Working Overtime: Career vs Care Video produced in collaboration with Kim Chapman, a caregiver from Calgary AB whose 58 year old husband has Fronto-Temporal Degeneration, and members of WP2.4 and 2.9. This is the first of three videos co-created with Kim about how caregiving impacts her ability to participate in the paid labour force.2.4 ATforCC, 2.9-CAT University of Alberta, University of Leicester, Johns Hopkins Medicine, University of Calgary Product 2019-09-03 2.4 ATforCC, 2.9-CAT Caregiving's ripple effect on relationships Video produced in collaboration with Kim Chapman, a caregiver from Calgary AB whose 58 year old husband has Fronto-Temporal Degeneration, and members of WP2.4 and 2.9. Mark Stolow also reviewed and commented on this video. This is the second of three videos co-created with Kim about how caregiving impacts her relationships with other people.2.4 ATforCC, 2.9-CAT University of Alberta, University of Leicester, Johns Hopkins Medicine, University of Calgary, HUDDOL Product 2019-09-03 2.4 ATforCC, 2.9-CAT Goals vs Needs: What Caregivers Want Dr. Janet Fast and Dr. Myles Leslie were interviewed by Jenna Roddick for an APPTA MileAGE podcast, sharing findings from their most recent study and collaboration on caregivers' goals.
Here is the link to their MileAGE podcast: https://podcasts.google.com/?feed=aHR0cHM6Ly9taWxlYWdlcG9kY2FzdC5saWJzeW4uY29tL3Jzcw&episode=NTRjZDhlZjIyZDliNDc1Mjg3NzU2YTYxNzliYzQ4ZjU&hl=en-CA&ved=2ahUKEwiz7O3q-YrmAhWUNX0KHfKoDtkQjrkEegQIARAG&ep=6&at=1574876963081 2.4 ATforCC, 2.9-CAT University of Alberta, University of Leicester, Johns Hopkins Medicine, University of Calgary, KTEE - Knowledge Mobilization 2019-09-30 2.4 ATforCC, 2.9-CAT The care capacity goals of family carers and the role of technology in achieving them 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, sustainability of FC’s unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs’ care-related work goals, and describes how those goals do, or do not, link to technology.
The article is open access.2.4 ATforCC, 2.9-CAT University of Leicester, Johns Hopkins Medicine, University of Calgary, University of Alberta Scientific Excellence - Advancing Knowledge 2020-02-27 2.4 ATforCC, 2.9-CAT
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