Understanding the Needs of Caregivers

Family caregivers are critical to the health and support of older people. The aim of this research theme is to gain better insight into how to better support caregivers. Our goal is to support the development of novel technological solutions that can provide more effective and efficient care; reduce the burdens and consequences of care, and also enhance the quality of life of caregivers. We are developing strategies to assist caregivers in making more informed decisions on the selection of technologies. 

Workpackage Leads
  • Janet Fast, University of Alberta
  • Louise Demers, University of Montreal


Core Research Projects

Innovative Technology for Caregivers – 2.1 INToCARE

Informal caregivers provide 75% of the assistance needed for individuals with disabilities to remain in their communities. This project is surveying caregivers to better understand their needs and challenges. It is reaching out to them as active partners in the development of technologies that could alleviate their burdens.

Project Leads
  • Ben Mortenson, University of British Columbia
  • Francois Routhier, Laval University
Researchers
  • Andrew Wister, Simon Fraser University
  • Claudine Auger, University of Montreal
  • Janet Fast, University of Alberta
  • Louise Demers, University of Montreal
  • Paula Rushton, University of Montreal

 

Portal for the Systematic Monitoring and Training of User-Caregiver Dyads after Provision of Assistive Devices – 2.2 MovIT-PLUS

In Canada, 1.1 million older adults use assistive technology to compensate for physical or cognitive limitations. Many of them also count on informal caregivers, but there is little support to assist the caregivers in the use of these technologies. This project aims to fill the gap, initially through the development of a web portal for caregivers to allow them to access ongoing training in the uses of mobility assistive devices such as canes, walkers, wheelchairs or scooters. The portal will also include other technologies developed by AGE-WELL.

Project Leads
  • Sara Ahmed, McGill University
  • Claudine Auger, University of Montreal
Researchers
  • Bill Miller, University of British Columbia
  • François Routhier, Laval University
  • Jeff Jutai, University of Ottawa
  • Louise Demers, University of Montreal
  • Manon Guay, University of Sherbrooke
  • Nathalie Bier, University of Montreal

 

Online Assistive Technology Rating and Recommending System for Caregivers – 2.3 CARE-RATE

There are many products that can help support an older adult with dementia to live in the community. But it is often up to family caregivers to find these products—a challenging process that can be difficult, frustrating and often futile. This project is applying a new type of artificial intelligence called “cognitive computing” to create an online tool that connects family caregivers to products they need to support themselves and the older adult with dementia. While it will be widely available via the Internet, it will be far more specific and powerful than conventional search engines, allowing lay people to describe in plain language what they need and the problem they want to solve.

Project Leads
  • Jennifer Boger, University of Waterloo
  • Frank Rudzicz, Toronto Rehab Institute/University of Toronto
Researchers
  • Alex Mihailidis, Toronto Rehab Institute, University Health Network
  • Jan Polgar, University of Western Ontario
  • Michael Ravenek, University of Western Ontario

 

Assistive Technologies that Care for the Caregiver – 2.4 ATforCC

Assistive technologies (AT) are assumed to lighten the burden of family caregivers. But there has been little study of the direct impact; most research centres on the care recipients. This project focuses directly on the caregivers themselves to study their needs and how AT affects their lives. Understanding eldercare providers’ unique needs and preferences is critical for the successful development and adoption of AT.

Project Leads
  • Janet Fast, University of Alberta
  • Norah Keating, University of Alberta
Researchers
  • Ben Mortenson, University of British Columbia
  • Eleni Stroulia, University of Alberta
  • Lili Liu, University of Alberta
  • Megan Strickfaden, University of Alberta

 

Wearable Caregiver Posture Coaching Feedback System – 2.5-S1 PCOACH

Low back injuries account for the majority of injuries sustained by caregivers due to helping with activities such as transferring from bed to toilet, lifting and bathing. Family caregivers are often thrust into their new roles with no guidance on how to approach these high-risk tasks. We have developed a wearable system that provides real-time feedback to warn caregivers when they bend or twist too far. We call the device PostureCoach.

Project Leads
  • Tilak Dutta, Toronto Rehab Institute/University Health Network

 

Connecting Working Caregivers – 2.6-CAT1 CWiC

Maintaining both employment and care work is a major challenge faced by the over 5.6 million employed family carers in Canada, most of whom work full-time. Care-related absenteeism, ‘presenteeism’ and turnover are common, and costs to carers and employers can be substantial. Assistive Technologies (ATs) may offer some solutions to this challenge, but studies on adoption of ATs in Canadian workplaces are rare. Using pulse check surveys, our feasibility study engaged AGE-WELL partners as employers to determine what role they and their carer-employees envision technology playing in supporting employees with family care responsibilities, their willingness to adopt/provide such technologies, and barriers to adoption. Stakeholders met October 18, 2016 to learn findings from the pulse check surveys, hear from a U.K. industry leader, and discuss innovative ideas for creating carer-friendly workplaces in Canada. We learned that there are disconnects between employers and carer-employees about their awareness of and understanding about family care as a workplace issue and their beliefs about the use of ATs at work to manage employees’ dual roles. Carer-employees identified several barriers to using ATs that inform product development, including not thinking the person they care for would accept ATs, not knowing what ATs are currently available, and not having enough time to learn how to use ATs. Concerted efforts are also required to bridge the gap between employers and carer-employees to create carer-friendly workplaces, including adopting ATs in the workplace that help carers streamline or reduce care demands, communicate more effectively with care network members, reduce stress and where possible, work remotely.

 

Project Leads
  • Janet Fast, University of Alberta
Researchers
  • Don Juzwishin, Alberta Health Services
  • Donna Lero, University of Guelph
  • Katherine Wilson, Employers for Carers UK
  • Nadine Henningsen, Canadian Home Care Association
  • Nora Spinks, Vanier Institute of the Family
  • Sandra MacLeod, Employment and Social Development Canada
  • Sue Yeandle, University of Sheffield

 

App Support for Informal Caregiving: Identifying Best Practices for the Implementation of a Technology-enhanced Homecare Service for Older Adults Living with Chronic Conditions. – 2.7-S4

Technology systems for supporting older adults living with chronic conditions in their homes are growing, which helps to alleviate some of the burden being experienced by caregivers. However, there are a number of barriers to widespread implementation and avoiding these challenges requires insights from ‘real-world’ applications. Our industry partner, Mavencare™ (www.mavencare.com) offers an innovative technology-enhanced homecare service whereby Mavencare™ staff providing care inputs regular updates via an App that caregivers can access. This project will provide insights from: a) caregivers who use Mavencare™ 's App to understand how the App influences their caregiving experience; b) caregivers who do not use the App to determine barriers to adoption; and c) Mavencare™ staff to learn how the technology has influenced their daily practice. The knowledge gained will be mobilized to inform further business development and ‘best practices’ regarding the implementation of a commercially-available technology-enhanced home-care service.

Project Leads
  • Sander Hitzig, Sunnybrook Health Sciences

 

Understanding how to Appropriately Support Indigenous Families with Dementia through Digital Storytelling: A Community-based Approach – 2.8-CAT

First Nations (FN) populations in Canada are rapidly aging and chronic diseases are epidemic. Dementia rates reported to be 34% higher in Indigenous compared to non-Indigenous people may be explained by the earlier onset of multiple chronic conditions (MCC) that have been linked to increased risk for dementia. Compared with non-Indigenous Canadians, Indigenous people experience more severe health, social and economic issues. Health inequities lead to onset of multi-morbidity at a much younger age in Indigenous persons and are further complicated by the challenges of healthcare delivery to rural and remote communities and potential inequities in access to health care.

Digital storytelling is a form of digital media production that allows everyday people to share aspects of their life story. The method aligns with the Indigenous ways of knowing. “Story is a practice in Indigenous cultures that sustains communities, validates experiences and epistemologies, and expresses experiences of Indigenous peoples, and nurtures relationships and the sharing of knowledge. Storytelling is also a central focus of Indigenous epistemologies, pedagogies, and research approaches.” Storytelling and the value of interpretative ethnography as a research method are shaping the emerging culture of translational research. The media used may include the digital equivalent of film techniques, stills, audio only, or any forms of material that exists only as electronic files, which individuals can use to tell a story or present an idea.

The purpose of this project is to introduce Digital storytelling as a technology to facilitate knowledge-sharing around common caregiver experiences and patterns through storytelling. Digital storytelling will then be integrated into the training sessions for caregivers and as tools to promote community-driven models to address the emerging health issues related to dementia diagnoses for Indigenous peoples in Canada. We will measure the impact of Digital storytelling in the development of community-driven dementia care models.

Project Leads
  • Janet McElhaney, Unknown
Researchers
  • Hoi Cheu, Laurentian University
  • Sheila Cote-Meek,
  • Taima Moecke-Pickering,

 

Developing User-Centred Digital Supports for Informal Networks that Provide Care for Elders: A Co-Design Approach – 2.9-CAT

Informal care networks provide the majority of care to a growing population of Canadian elders. The proposed project seeks to co-design a digital application to support the lives and efforts of these informal caregivers. For such an application to successfully free up time, reduce burnout, improve care, and increase wellbeing it must originate from the needs and priorities of informal caregivers themselves. To accomplish this sort of ‘user centered design,’ the project will use a modified version of the collaborative Design Thinking Process (DTP) to map challenges and imagine feasible technology-enabled solutions. Our working assumptions going into the DTP are that cloud-based recruitment, scheduling, communication, knowledge bank, service navigation, and patient sensing elements have the potential to support the work of informal care networks. Over the course of a Citizen Panel session (step one in the DTP), a Delphi priority setting exercise (step two) and a Design Thinking co-development event (step three), these assumptions will be tested against the real-world experience of caregivers, the technical know-how of software engineers, and the implementation expertise of healthcare quality and safety specialists allowing us to prioritize certain elements for development, and to produce a prototype digital application that truly assists informal caregivers.

Project Leads
  • Myles Leslie, University of Leicester
Researchers
  • Francois-Pierre Gauvin,

 

Illustrating Designed Things as Therapy – 2.10-SIP A1

The median population age for many European countries, China and North America is increasing, which shifts financial, emotional and infrastructure burdens of care to an increasingly smaller proportion of caregivers. Governments, care organizations, and affected family members are seeking new ways of optimizing the lives of older persons within limited resources. Transitions experienced as people grow older (e.g., spousal loss, moving, health incidents) are challenging, yet designed things can offer support. This project's goal is to mobilize knowledge about explicit design interventions that can improve and/or change little things that make a difference in how well older persons adjust and cope with new (and sometimes old) circumstances. Our objective is to highlight everyday situations within near and built environments that offer combinations of care, emotional well-being, safety, and recipient acceptability, while presenting possible solutions. We will co-create five short illustrated films emerging from fifteen years of ethnographic research into how older persons and those with disabilities interact within built environments. The films will be intergenerational co-creations with caregivers, older persons, research students, and student illustrators. They will be shown and vetted within care communities in ethnically diverse locations for refining and improving upon them through an iterative and collaborative process. Highly qualified personnel will be mentored and will develop their own research interests within the project. We understand that older persons are neither homogeneous in culture, ethnicity, religion, nor in the degree to which they need care, physical, and emotional support. Therefore, these films address cultural needs and differences while creating an awareness of the relationships between older persons and designed things including assistive technologies. The films will be made available in several languages to caregivers, schools, governments and the general public in Canada and elsewhere as educational materials and points of discussion into aging well.

Project Leads
  • Megan Strickfaden, University of Alberta

 

Caregiver Needs: Data Development and Dissemination – 2.11-SIP A1

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.

Project Leads
  • Janet Fast, University of Alberta
Researchers
  • Mark Stolow, HUDDOL

 

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