This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
Home care is on the rise, and its delivery is increasingly reliant on an expanding variety of health technologies ranging from computers to telephone “health apps” to social robots. These technologies are most often predicated on expectations that people in their homes (1) can actively interact with these technologies and (2) are willing to submit to the action of the technology in their home. Our purpose is to use an “ability expectations” lens to bring together, and provide some synthesis of, the types of utility and disadvantages that can arise for people with disabilities in relation to home care technology development and use. We searched the academic databases Scopus, Web of Science, EBSCO ALL, IEEE Xplore, and Compendex to collect articles that had the term “home care technology” in the abstract or as a topic (in the case of Web of Science). We also used our background knowledge and related academic literature pertaining to self-diagnosis, health monitoring, companionship, health information gathering, and care. We examined background articles and articles collected through our home care technology search in terms of ability expectations assumed in the presentation of home care technologies, or discussed in relation to home care technologies. While advances in health care support are made possible through emerging technologies, we urge critical examination of such technologies in terms of implications for the rights and dignity of people with diverse abilities. Specifically, we see potential for technologies to result in new forms of exclusion and powerlessness. Ableism influences choices made by funders, policy makers, and the public in the development and use of home health technologies and impacts how people with disabilities are served and how useful health support technologies will be for them. We urge continued critical examination of technology development and use according to ability expectations, and we recommend increasing incorporation of participatory design processes to counteract potential for health support technology to render people with disabilities technologically excluded and powerless.
Home care, consisting of provision of health support and resources within a person’s private residence, is an increasingly preferred model of care for older people and people with disabilities who are in constant need of some form of health intervention [
In this paper, we focus on ways that health technologies may change ability expectations for people receiving home care. We critically examine how technology-driven products and processes, including those related to self-diagnosis, health monitoring, companionship, health information gathering, and care, pose new challenges in terms of physical and cognitive accessibility for people with disabilities. Non-normative body abilities present challenges for physically accessing health technologies while non-normative intellectual abilities raise obstacles for understanding information provided via health technologies and for understanding how to operate a given health technology. In this paper, we use the lens of ability expectations (that one wishes to possess certain abilities and regards these abilities in others as desirable) and ableism (where such ability expectations are viewed as not only desirable but also essential) to examine the impact of ability expectations inherent to using self-diagnosis, health-monitoring, and care devices. In short, this lens is used to focus on what abilities are expected and why, and the impact of such ability expectations [
The term ableism evolved from the disabled people rights movements in the United States and Great Britain during the 1960s and 1970s [
This paper is our attempt to momentarily apprehend this ever-evolving pattern to draw out the utility and potential disadvantages so-called supportive technologies may pose for people with disabilities. We approach this through a critical examination of a selection of academic literature. We collected articles from the academic databases Scopus (n=72), Web of Science (n=19), EBSCO ALL (n=27), IEEE Xplore (n=6), and Compendex (n=6) that had the term “home care technology” in the abstract or as a topic (in the case of Web of Science) (May 10, 2014). We also used our background knowledge and related academic literature pertaining to self-diagnosis, health monitoring, companionship, health information gathering, and care that we have used in earlier work. We examined these articles in terms of ability expectations assumed in the presentation of home care technologies, or discussed in relation to home care technologies. Our purpose is to bring together, and provide some synthesis of, the types of utility and disadvantages that can arise for people with disabilities in home care technology development and use.
As part of a widespread “do-it-yourself” move towards obtaining health information from online sources without involving a health practitioner, health clients increasingly expect to be in the driver’s seat with their health interventions [
The Ontario Homecare Association [
Home care has evolved by responding to changes that have occurred in the hospital sector (bed closures, increase in ambulatory care clinics, and day surgery) and in the long term care facilities sector (waiting lists for beds, limited availability). As a result, home care has emerged as an integral component of Canada’s health care system and essential to its sustainability. Home and community care comprises 4.25% of the overall spending on health care within provincial budgets
Health technology developments expand the ways in which the home is part of health care delivery. Sensor networks and ubiquitous computing are two leading technology developments that enable what is being termed “smart home care”. Smart home care entails, among other things, the use of miniature sensors and is designed to assist the elderly and chronic patient in ways that “integrate with existing medical practices and technology” and “enable real-time, long-term, remote monitoring” [
Interactive devices also occupy an expanding place in home health monitoring and care. For example, wireless personal digital assistants (PDA) for telemedical diabetes care enable communication between a glucometer, an insulin pump, and a continuous glucose sensor controlled through the patient’s PDA device and responded to by the patient through a user-friendly interface [
While we applaud advances in health care support made possible through emerging technologies, we urge critical examination of such technologies and their implications for the rights and dignity of people with diverse abilities. Using an ability expectation lens to examine technologies, we note concerns with potential for technologies to result in new forms of exclusion and powerlessness.
At first blush, the pervasiveness of accessing health information from online sources appears to be an important step towards a democratization of health information. Yet ease of access is far from democratic. For example, 3000 randomly sampled adults (2006) expressed frustration with a lack of information or an inability to find what they were looking for online, while 18% indicated feeling confused by information they found online [
Additional layers of exclusion arise given potential for use of sensors or robots by people with disabilities to result in decreased human interaction owing to sensors or robots replacing hands on/relationship-based health care providers [
Health technologies raise a host of potential for people with disabilities to experience powerlessness through restrictions of access to, and control over, devices, along with restrictions in the very processes of consenting/approving use of devices.
Many, if not all, health technologies that expect “patient” interaction, such as the telemedical diabetes care devices, raise questions about “user friendliness” given that procedures requiring patients to generate, interpret, and relay information may not be accessible for people with physical or cognitive differences. Similarly, some functions of social robots require cognitive, physical, and in some cases, emotional abilities from the disabled person in order for the social robot to be of use.
Other monitoring and support features of devices and social robots may be viewed as “ability neutral” in terms of interaction expectations placed on the person being monitored, that is, the person is not required to program, interpret, or actively respond. However, these devices and robots raise ethical concerns pertaining to the ability of people with impairments to fully understand use of the devices, which in turn raises potential for invasions of privacy [
Although the relative abundance and accessibility of prescribed health monitoring and support devices and Internet-based health information have expanded the reach of health support in general, accessibility and utilization for people with physical, cognitive, or sensory differences have not been accounted for in the design of many such health technologies. We argue that physical and social realities of people with disabilities command greater attention toward understanding and increasing accessibility of health technologies. People with disabilities are likely to experience more intense and complex health needs as they have relatively less access to social determinants of health such as economic security, social inclusion, and access to health promotion [
Consistent with the principles indicated in research guidelines, which require collaboration with patients/participants [
At the same time, a number of researchers point out difficulties associated with participation by people with disabilities [
Rice et al (2007) discuss elder-friendly technology development and offer strategies for addressing an array of issues related to anxiety with technology, needs for concrete examples, and reluctance to complain [
We have provided a glimpse of what is possible, and for whom, in home self-diagnosis, health monitoring, companionship, health information gathering, and care. Ableism influences choices made by funders, policy makers, and the public in the development and use of home health technologies and impacts how people with disabilities are served and how useful health support technologies will be for them. We urge continued critical examination of technology development and use according to ability expectations, and we recommend increasing incorporation of participatory design processes to counteract potential for health support technology to render people with disabilities technologically excluded and powerless.
None declared.