A University of Toronto research team is exploring the complexities and subtle influence of sex and gender when it comes to the creation and adoption of technology solutions that match the needs of informal caregivers.
More than 25% of Canadians over the age of fifteen are now informal caregivers. Despite the often-negative personal impacts and costs, these individuals provide care to family members or friends living with disabilities, long-term health conditions and issues associated with aging. Informal caregivers provide spiritual, emotional, and hands-on care, reduce social and healthcare costs, and add care coordination worth more than $33 billion annually to the Canadian economy.
Much work has been dedicated toward the development of strategies and interventions to alleviate caregiver stress and burden, in particular the introduction and incorporation of technology to improve quality of life and assist with caregiving activities. These innovations include, but are not limited to, telehealth and internet-based support programs, Global Positioning System (GPS) tracking devices and home monitoring applications.
The influence of sex and gender
An important factor to consider when studying the experiences of caregivers is the gendered nature of this role. Family caregivers are often women; women make up an estimated 54% of Canadian caregivers as well as 57% to 81% of caregivers of the elderly worldwide. In a recent review on caregiving experiences, female caregivers were found to report higher levels of depression compared to male caregivers (Xiong, Biscardi, et al., 2020).
Additionally, female caregivers have also reported poorer physical health and more comorbidities as well as higher caregiver burden and lower levels of support when compared to men. However, despite significant sex and gender differences in psychosocial and overall health among informal caregivers, there has been little systematic work done to recognize these influences on the design, adoption and evaluation of new technologies.
In addressing this important gap our research team at the University of Toronto, in collaboration with Health Canada, sought to develop a sex- and gender-sensitive tool. Through data gathered from a systematic literature review, a survey of informal caregivers as well as in-depth conversations with informal caregivers and technology researchers, we have now developed the Caregiving, Diversity and Technology Assessment (CareDATA) tool.
A new tool
This self-assessment tool, CareDATA was designed for technology developers to use when assessing the level of integration of sex, gender, and other diversity characteristics prior to launch. Assessment questions within CareDATA are grouped into fourcomponents relating to 1. Informal caregivers’ technology needs, 2. Preferences, 3. Barriers and 4. Technology uptake. The four components are then informed by one crosscutting theme on incorporating sex, gender and diversity.
An over-arching crosscut
CareDATA’s crosscutting theme relates to the consideration of sex, gender and diversity concepts and helps in assessing its level of incorporation in three distinct categories. The first category relates to the involvement of caregivers as the development of technology because caregiving is a unique and personalized experience for both the care provider and recipient. There is a diverse range of factors that can influence a caregiving experiences, which will need to be considered when developing technologies. Specifically, informal caregivers have reported dealing with factors including family dynamics, race, ethnicity, culture, societal norms and expectations, as well as their own self-conceptualization of the caregiving role. Additionally, technology needs and preferences among caregivers are also very diverse and are mediated by factors including but not limited to caregiver sex, gender, age, education, socio-economic status, and geography. For example, female caregivers were more likely to have some or more knowledge about technology for caregiving while male caregivers and caregivers with higher incomes were more willing to pay higher amounts for these technologies compared to their female counterparts. In addition, older caregivers were less likely to perceive technology to be useful in assisting with caregiving activities. Given these differences, many technology developers still need to work on expanding their current design frameworks to consider these factors to enhance adoption.
A second area is related to the stereotypes relating to the pre-conceived biases and assumptions that developers are currently making. These can include misconceptions and generalizations of technology perceptions across ages, socio-economic status as well as between men and women. Finally, the third point to make is the need for diversity within the technology development team. Despite recognizing the need to incorporate sex, gender and diversity, tech developers have expressed limitations in their ability to do so. These obstacles create significant knowledge and partnership gaps that includes: a lack of understanding of sex, gender and diversity, complexities of incorporating diversity factors, insufficient data to effectively conduct sex- and gender-based analysis and a serious lack of training and resources to address unfamiliar variables and concepts. Let’s explore the four components of our new tool:
1 Identifying caregivers’ needs
The first component relates to the identification of caregivers’ technology needs. It highlights the importance of establishing a specific target audience and working with this audience to identify the need that the proposed product will address, all while taking into consideration the categories of the crosscutting theme.
A range of tasks with which technology can potentially support caregivers has been identified. These tasks include but are not limited to communication, obtaining up to date information, self-care (maintenance of physical and mental well-being), providing a sense of security, supporting regular chores and time management. In completing these tasks, caregivers engage with a wide variety of digital technologies including e-health, communication and self-care applications, smartphones, and tablets as well as home monitoring systems. Given the multitude of roles technology plays in assisting with caregiving, technology developers need to clearly establish the need and specific caregiving group that correspond to their proposed product from the beginning.
2 Meeting caregiver preferences
The second concerns the meeting of caregiver technology preferences. Items within this component point to the need to consider and incorporate caregivers’ preferences when designing technologies for them. At the same time, technology developers also ought to identify and propose solutions to overcome any challenges in meeting these diverse preferences. There are several features and characteristics that caregivers seek when they are considering a new technology to be used on a regular basis. Caregivers expressed that when present, these characteristics will enhance their perception towards a device and increase the likelihood of technology adoption. These characteristics included accessibility (especially to older caregivers who may have physical and cognitive limitations), value-for-money, eco-friendly, familiarity of use and operation, multi-functionality, having a seamless operation, providing regular updates and the availability of immediate support.
3 Overcoming barriers in technology adoption
The third component brings to light the potential challenges a variety of caregivers may face in technology adoption. Today’s caregivers have varying levels of technology exposure and knowledge. As such, those with more limited skill sets may not be able to make full use of the technology. Moreover, caregivers may also face difficulties when the technology breaks down and troubleshooting is required. Beyond the operation, caregivers also expressed concerns with the security and privacy of their data. Given technology’s increasing reliance on big data and cloud storage, caregivers may be reluctant to release their personal information as they worry that it may be compromised or breached. And, finally, caregivers have established caregiving routines and approaches that may not align with the use of certain new technologies. Hence, the incompatibility with caregiving contexts may pose as stumbling block for caregivers looking to adopt new technology.
Hope for the future
While the Royal Society report brought clarity to the nursing home crisis in Canada, there is hope for the future. Part of the problem is nursing home building design. Most nursing homes built between 1950 and 1990 accommodated larger number of residents (200–400 per home) with communal bathrooms and dining spaces. These nursing homes resembled hospitals, with limited natural lighting and outdoor space. Infection control during a pandemic is particularly hard because of inability to physically distance infected residents. Modern nursing homes built in the past two decades offer private rooms with ensuite bathrooms, and generally house fewer residents per home (80–120). As older buildings get replaced by newer ones, the physical space can be designed to balance protection of residents and staff, while maintaining indoor and outdoor communal areas for socialization.
Even older buildings can be retrofitted with modern technology to help residents stay connected with family members during a pandemic. The installation of high-speed wireless internet in older homes allows the use of video calling technology so that patients can see and hear from their families, even when they are not allowed to visit. Future virtual reality technology may allow for a more immersive experience while patients are isolated physically. The main downside to these technologies is that people with dementia may not perceive people on a screen in the same way as a real person, leading to confusion or lack of interest.
Although the overall death rate in LTC in Canada is relatively high, there are Canadian regions where LTC outbreaks were well controlled, including Kingston (Ontario) and British Columbia. Experience from these places suggest the benefit of a coordinated approach between local hospitals and nursing homes to manage infected residents without compromising hospital capacity. Widespread testing and contact tracing of nursing home staff and residents were beneficial strategies. Adequate protective equipment, early isolation of infected residents, and limiting visitors were effective in preventing spread of the disease.
However, restriction of visiting family members impacts residents who depend on those caregivers. It is frightening for residents with dementia to see unfamiliar people with masks providing personal care such as toileting and bathing. A familiar face can go a long way in reducing anxiety and bringing comfort at a stressful time. Allowing visitors with appropriate testing and protective equipment may be an important way to ease staffing issues while policymakers work on the recommendations in the Royal Society report.
As the pandemic continues, it is important to recognize that LTC is integral to our society. Nursing home residents are the generation who made our modern way of life possible. We have a duty to combat ageism and provide the compassionate care that nursing home residents deserve. By coordinating a plan to systematically improve LTC across the country, we can pave the way for safe, equitable, and hospitable nursing homes for generations to come.
Trina Thorne is a Nurse Practitioner and PhD student with a research focus on improving quality of life and quality of work life in continuing care settings.
Eric Wong is a Geriatrician and PhD student in Clinical Epidemiology and Health Care Research with a focus on improving the care of older adults.
Full report and 16 principles: roc-src.ca/en/restoringtrust-COVID-19-and-future-long-term-care.