Caregivers' experiences with the selection and use of ...

Disability and Rehabilitation: Assistive Technology

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Caregivers’ experiences with the selection and use of assistive technology W. Ben Mortenson, Alex Pysklywec, Marcus J. Fuhrer, Jeffrey W. Jutai, Michelle Plante & Louise Demers To cite this article: W. Ben Mortenson, Alex Pysklywec, Marcus J. Fuhrer, Jeffrey W. Jutai, Michelle Plante & Louise Demers (2017): Caregivers’ experiences with the selection and use of assistive technology, Disability and Rehabilitation: Assistive Technology, DOI: 10.1080/17483107.2017.1353652 To link to this article: http://dx.doi.org/10.1080/17483107.2017.1353652

Published online: 02 Aug 2017.

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Date: 10 August 2017, At: 05:50

DISABILITY AND REHABILITATION: ASSISTIVE TECHNOLOGY, 2017 https://doi.org/10.1080/17483107.2017.1353652

ORIGINAL RESEARCH

Caregivers’ experiences with the selection and use of assistive technology W. Ben Mortensona,b,c, Alex Pysklyweca,b, Marcus J. Fuhrerd, Jeffrey W. Jutaie, Michelle Plantef and Louise Demersf,g

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a Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, Canada; bGF Strong Rehabilitation Research Program, Vancouver, Canada; cInternational Collaboration on Repair Discovery, Vancouver, Canada; dEunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, MD, USA; eInterdisciplinary School of Health Sciences, University of Ottawa, Bruyere Research Institute, Ottawa, Canada; fCentre de recherche de l'Institut universitaire de geriatrie de Montreal, Centre integre universitaire de sante et de services sociaux du Centre-Sud-de-l’^Ile-de-Montreal, Montreal, Canada; gEcole de readaptation, Universite de Montreal, Montreal, Canada

ABSTRACT

ARTICLE HISTORY

Qualitative data from a mixed-methods clinical trial are used to examine caregivers’ experiences with the selection and use of assistive technology to facilitate care recipients’ independence. Through a thematic analysis of interviews from 27 caregivers, three broad themes were identified. “A partial peace of mind” described the generally positive psychological impacts from assistive technology, mainly reduced stress and a shift in caregiving labour from physical tasks to a monitoring role. “Working together” explored the caregivers’ experiences of receiving assistive technology and the sense of collaboration felt by caregivers during the intervention process. Finally, “Overcoming barriers“ addressed two impediments to accessing assistive technology: lack of funding and appointment wait times for service providers. The findings suggest that assistive technology provision by prescribers plays a beneficial role in the lives of caregivers, but access to such benefits can be hampered by contextual constraints.

Received 21 March 2017 Revised 28 June 2017 Accepted 6 July 2017 KEYWORDS

Family caregivers; prescribing assistive technology; self-help devices; assistive technology; qualitative research

ä IMPLICATIONS FOR REHABILITATION

The study findings have a number of implications for rehabilitation practice: Family caregivers can be instrumental in determining what assistive technology is needed and then procured. Their involvement in the selection process is desirable because assistive technology may have both positive and negative impacts on them, and they themselves may use the devices chosen. Involving family caregivers as more active partners in the process of assistive technology provision may represent a greater time investment in the short term, but may contribute to better long-term outcomes for care recipients and caregivers as well. Limited access to funding and long appointment wait times are potential barriers to obtaining necessary assistive technologies.

Introduction Family caregivers (i.e., spouses, adult children, friends, or significant others) provide assistance with activities of daily living to people living with disabilities. These caregivers provide up to 80% of assistance given to care recipients [1]. In the US, it is estimated that 34.2 million people (i.e., 14.3% of the adult population) provide care to those over the age of 50 [2]. The estimated annual value of this caregiving is placed at $470 billion [3]. This important contribution, however, can take a toll on caregivers’ physical and psychological health in the form of higher rates of illness [4] and depression [5]. Caregiving is often supplemented with the use of prescribed assistive technologies, defined as “any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities” [6]. In general, it is assumed that assistive technologies increase users’ independence and, therefore, decrease burden for caregivers. Yet, CONTACT W. Ben Mortenson V5Z 2G9, Canada

[email protected]

ß 2017 Informa UK Limited, trading as Taylor & Francis Group

systematic reviews conducted by Mortenson et al. [7] and Marasinghe [8] reveal limited research supporting this claim, and relatively little of this research has explored caregivers’ experiences of assistive technology through a qualitative lens. Previous quantitative studies have found that assistive technology can have mixed effects on caregivers. Assistive technology has been associated with an increased sense of security for the caregiver [9], decreased burden [10], increased caregiving task efficiency [9], and fewer hours of caregiving [10-12]. Certain types of assistive technology (e.g., wheelchairs) have been associated with increased caregiving hours [13]. Demers et al. [14] pointed to several factors that shape the caregiver’s experience of assistive technology, including the type of assistance the caregiver provides, the overall number of tasks and the physical effort involved in caregiving, and the caregiver’s emotional coping strategies and self-efficacy. Other qualitative research findings indicate that assistive technology may decrease caregivers’ concerns about care recipients’ safety [15–17], make

Rehabilitation Research Program, GF Strong Rehabilitation Centre, 4255 Laurel Street, Vancouver, BC


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W. B. MORTENSON ET AL.

some caregiving tasks easier [18], and reduce caregivers’ burden, stress, and anxiety [18,19]. Caregivers may substitute assistive technology for some of the hands-on care they provide, potentially granting themselves more free time [19,20], and decreasing the physical effort required for caregiving [19,20]. However, specific assistive technologies, motorized wheelchairs in particular, can entail increased physical demands such as those involved in transporting or dismantling them [20]. Remote monitoring technologies may place an onus on caregivers to check up on care recipients more regularly [21]. Communication aids may increase demands on caregivers who can now be more easily contacted [22]. Caregivers have also reported concerns for potential accidents while using assistive technology involving themselves [15] or the care recipient [16,19,20]. Caregivers provide critical assistance and yet there is limited research about their experience of assistive technology interventions, their interactions with prescribers, or their role in selecting devices. Therefore, we conducted a study with two principal objectives. The first was to explore caregivers’ experiences with the use of assistive technology that is employed to facilitate more independence for care recipients. The second was to gain an understanding of their experiences with the process of identifying and selecting assistive technology.

Methods Qualitative data were collected as part of an overall mixed-methods assistive technology intervention study that involved dyads of older adults and family caregivers [23]. The experimental group intervention was carried out by occupational therapists and entailed working closely with caregivers to identify areas of concern and select assistive technology [10]. The control group received customary care. Semi-structured interviews were conducted at the end of the overall study with all willing caregiver participants. A subsample was also interviewed immediately following the intervention. The research ethics boards at each participating site approved the study. The overall clinical trial is registered at ClinicalTrials.gov, identifier: NCT01640470. It was registered on 21 November 2011. Participants To be included in the study, caregivers needed to provide unpaid assistance for a minimum of four hours per week for at least one month to a person who was 55 years of age or older with a mobility limitation. Twenty-seven caregivers were interviewed at the end of one year, including 14 who were interviewed immediately after the intervention. Sociodemographic and other data characterizing participants are presented in Table 1. Table 1. Background characteristics of caregivers. Mean ± SD or (%) Age (Years) Sex (Female) Location Montreal Ottawa Live with care recipient (Yes) Employed (Yes) Relationship with care recipient Spouse Child Extended kin or non-kin Years assisting care recipient Average hours/week providing assistance

63 ± 15 18 (67) 18 7 22 6

(67) (31) (88) (23)

18 (67) 8 (30) 1 (4) 6 ± 4.5 20 ± 24

N 25 27 27 27 27 27

27 27

Their sociodemographic makeup is similar to that of the 90 caregivers in the overall study [24]. Procedures and data collection Interviews were carried out in Montreal, Quebec, and Ottawa, Ontario, Canada. Caregivers were recruited for the study by initial referral from occupational therapists at each site based on eligibility criteria. Participants were then informed of the option to volunteer for the qualitative portion of the study. There were no relationships between members of the research team and caregivers prior to commencement of the overall study. Data were collected from participants by means of semi-structured interviews based on an interview guide. The guide, in English and French, was created on the basis of a similar pervious study [10] using an iterative process with drafts circulated among a subset of the authors until consensus was reached. Interviews focused on caregivers’ experiences of the intervention and of the assistive technologies received previous to or as part of the overall study. Types of assistive technologies discussed include canes, walkers, wheelchairs, grab bars, raised toilet seats, and bath benches. Example interview questions include: Which aspect of the intervention did you find most helpful? What impact did the intervention have on you? Did the devices or the recommendations or advice have effects on your everyday activities? What, if any, benefits did you experience from them? The interviews were conducted by phone or in person by the first author who has extensive qualitative research experience or research assistants who he trained and supervised. The digital recordings were transcribed verbatim, French transcripts were translated into English, and all transcripts were reviewed for accuracy. All data were stored and coded using NVivo 10 qualitative data analysis software. Data analysis A thematic analysis was conducted to identify patterns of meaning [25] within the data. Transcriptions were read multiple times by the first and second authors. The first reading developed a sense of the data and allowed for preliminary coding. The process of reading and rereading the transcripts and the preliminary coding resulted in recognizing patterns in the data and generating further subcodes. The coding/subcoding process was carried out by the second author. Additional discussion between authors resulted in integrating the codes and subcodes into three overarching themes. Two primary trustworthiness strategies were used. To promote reflexivity, the authors met regularly to discuss how their biases and assumptions shaped the way data were collected and interpreted. Negative case analysis, i.e., the identification of cases that ran counter to the dominant narrative of the analysis, was used to account for a wider range of caregiver experiences [26].

Results Our analysis identified three main themes: 1) “A partial peace of mind” described caregivers’ physical and emotional experiences with assistive technology; 2) “Working together” explored the experiences of the visits from prescribers and receiving assistive technology; and 3) “Overcoming barriers” examined impediments to accessing assistive technology. In the text that follows, all participants have been anonymized and are referenced by their participant number, between 01 and 27, and their location, Montreal (M) or Ottawa (O). Participants’ quotes have been edited to remove linguistic fillers such as “um”, “uh", and “you know”.

CAREGIVERS’ EXPERIENCES WITH ASSISTIVE TECHNOLOGY

Ellipses have been used to indicate the removal of a portion of a quote more substantial than linguistic fillers. A partial peace of mind Most caregivers reported that assistive technology benefitted them, especially psychologically. Ten felt more secure about the care recipients, believing they were able to perform certain tasks more safely. This belief was illustrated by a caregiver whose friend had deteriorating health and poor balance. She noted:


Definitely it’s safer. My goodness, he had quite a few falls … I’m so glad he had the toilet thing and the shower thing. I’m glad, because I feel much more at ease in that nothing is going to happen, you know? … It gives you peace of mind. (22O)

Seven caregivers asserted that assistive technology decreased their sense of anxiety about the safety and well-being of the care recipient. As one caregiver, whose wife had Parkinson’s disease commented, “I saw her one morning [with her] head between the bed, the dresser, and the headboard. … It was hard to get her back up” (15 M). He elaborated that after a bedside assistive rail was provided, “I'm less afraid for her, for sure. … Now it’s nice, because then we know that it will not happen [again] … ” (15 M). When asked how assistive technology affected their lives, four caregivers related how the well-being of the care recipients had changed for the better. For some caregivers, assistive technology was helpful, but there was a limit to the psychological benefits. As one caregiver, whose mother was recently diagnosed with Parkinson’s disease pointed out, assistive technology “helps, right? But the problem is still in the back of my mind. So, do I have a peace of mind? No, but I have more peace of mind than if she had nothing” (17 M). For some caregivers, then, assistive technology did not entirely relieve their stress. Assistive technology impacted the sense of physical burden associated with certain tasks. The daughter of a woman with a fractured hip described how: I can raise the [electric] bed up to my height, because I’ve got five herniated disks in my lower back with pinched nerves and arthritis, so bending all the time over the bed was not good. So, being able to lift the bed up and down, that’s been huge. (02M)

Five participants indicated that using assistive technology originally intended for care recipients facilitated their own day-today activities. One caregiver noted that his wife, who was heavily reliant on a wheelchair, “uses the stair lift 100% of the time and I use it about 40%, I’d say” (26 O). Assistive technology provided respite from performing certain caregiving tasks, freeing up time to pursue other activities. For one caregiver, whose husband had diabetes and used a motorized wheelchair, she could now “take him shopping with me and … I don’t feel like I’m leaving him alone. And then he gets out of the house a bit more and it gives me some free time” (21 O). In total, three caregivers reported an increased sense of time off and gratitude for being able to pursue other desired activities. Finally, assistive technology shaped the nature of the caregiving work performed. Several participants spoke about how the nature of that work was transformed from a provision of direct physical assistance to that of supervision. One caregiver stated that he no longer needed to help bathe his mother. He added, though, “I’m still around. … I have to be there, just in case something happens” (11 M). While some caregivers could shift to a less labour-intensive monitoring role, this was not the case for others. In one instance, a raised toilet seat was generally helpful for a caregiver whose husband had a spinal cord injury, but it

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“gives me a lot more [cleaning] work, every time after we use it. … It’s really painful to me, the work, after each use” (09 M). Another caregiver reported that assistive technology created more labour because she needed to move the device, a bath bench, around the washroom in order to bathe comfortably. Working together Overall, caregivers indicated that assistive technology represented a generally positive and helpful addition to their lives; nevertheless, it was not the only component of the intervention that mattered. Visits with prescribers were also seen as supportive, representing key moments for obtaining important caregiving information, addressing concerns, and collaboratively selecting possible assistive technologies to be received. As a caregiver, whose husband faced mobility challenges explained, the prescriber “was very, very good, and she really answered all our questions. … [She] questioned whether I was worried at times or if it [caregiving] affected me psychologically” (04 M). For another caregiver, visits from prescribers were a chance to learn “about how I could help him [the care recipient] get into and out of the tub onto that bench thing, and fill up the tub and things like that” (05 M). Accordingly, visits with the prescribers were also opportunities to receive and practice using assistive technology devices. For the majority of caregivers, the process of identifying areas of concern and possible assistive technology solutions was experienced as a collaboration among themselves, care recipients, and prescribers. For one caregiver, whose husband had diabetes, prescriber visits were opportunities to look for alternate caregiving solutions and ensure that everyone was in agreement. She noted, “the three of us were always meeting together. … We discussed things as a group so we all knew what was happening” (23 O). Another caregiver whose mother was diagnosed with a rare blood disorder related a similar group experience when she was “able to help by saying, ‘Well, Mom, you need this, Mom, you need that,’ and then it was the [prescriber] who was able to provide it, the specific piece of equipment, once we … found the problems” (16 M). Caregivers reported playing an instrumental role in the process of assistive technology provision. One caregiver, whose wife had Parkinson’s disease, described his involvement in the process: I had my input as to, [what] she could use – like, she got the rail on the bed, and I installed that equipment. … I put another [grab] bar … in the bedroom where [the prescriber] thought it was a good idea to put one. (19O)

Thus, sometimes caregivers were involved in the selection process and helped determine where certain forms of assistive technology would be installed.

Overcoming barriers Two main barriers were identified by participants: wait times for an appointment and funding for assistive technology. In some instances, wait times for appointments with prescribers delayed the provision of assistive technology and caregiver training for participant dyads, leaving caregivers on their own. For one caregiver, whose mother had fractured her foot, the appointment was, “a little bit too late. … That stuff really would have been needed in, you know, the very first week that it happened” (06 M). Caregivers reported that wait times in Montreal ranged from a few weeks to one year or more; and in Ottawa, they varied between a few days and several months.

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The availability of funding and the ease of access to equipment were identified as important issues by most caregivers. In Montreal, caregivers related that the provincial government was the main source of assistive technology funding. Ottawa caregivers noted that funding came from multiple sources, including charities, non-profit organizations, and various municipal and provincial government programs. For some caregivers in Ottawa, the complexity of funding required considerable groundwork to navigate. One caregiver whose husband required a wheelchair described her frustration after their funding applications to the government and a local non-profit organization were not approved. She related that they needed to “get our bathroom redone because [my husband] can’t get in and out of the bathtub … and we thought [of a local non-profit] and they said they couldn’t do anything because they didn’t have the money” (21 O). Another caregiver pointed out that people learned to manage with whatever funding and assistive technology they could obtain, suggesting that most participants welcomed any form of assistance.

Discussion This study offers a glimpse into caregivers’ experiences with the selection and use of assistive technology to facilitate independence for care recipients. The findings contribute to a growing body of evidence about the potential benefits of assistive technology for caregivers. Similar to the findings of Starkhammar and Nygård [15], assistive technology appears to provide caregivers with a greater sense of security about care recipient’s safety. As Pettersson et al. [16] have concluded, the use of assistive technology can change the nature of caregiving labour from the provision of direct physical assistance to that of supervision. By reducing direct care provision, assistive technology may also provide the caregiver with a sense of freedom to pursue non-caregiving activities [20,27]. Furthermore, the findings echo those of Hammel et al. [19] and Riikonen et al. [18] by highlighting how assistive technology may reduce caregivers’ feelings of anxiety and stress. A novel finding of the present study is that in addition to providing assistance to care recipients, assistive technology may also be used by caregivers to enhance performance of their own dayto-day activities. This has implications for the ways assistive technology is prescribed. Caregiver use of assistive technology is a topic that prescribers may need to explore explicitly with caregivers. It may also be beneficial to caregivers if prescribers consider their needs in conjunction with care recipients so that the devices provided are appropriate for both parties to use (e.g., in terms of the positioning of bath bars and the types of bathing equipment). Directly addressing caregivers’ assistive technology needs may fall within the purview of some funding structures, for example, in the United Kingdom where a caregiver has the legal right to have their own needs assessed and, where eligible, receive state support [28]. However, funding for assistive technology that is caregiver specific may be limited in other jurisdictions. Reimbursement for billable hours may also be a limiting factor for prescribers wishing to address the needs of both the care recipient and the caregiver. Notwithstanding the potential benefits of assistive technology, some caregivers, as can be seen above, may have inflated expectations about a device’s ability to address problematic activities. In the short term, unmet expectations may lead to caregiver disappointment or frustration. Unrealistic expectations may also contribute to accidents such as falls, if, for example, a device that a caregiver thought could be operated independently actually

required supervision to be used safely. In the long term, caregivers with unmet expectations or remaining safety concerns may not support the use of assistive technology, resulting in its nonuse [29]. Realistic caregiver expectations can be fostered by a focus on training and the use of online resources such as websites devoted to evidence-based assistive technology information [30]. Visits from prescribers appeared to be important to caregivers for a variety of reasons. They represented potential opportunities to receive assistive technology that otherwise they might not have been aware of or would have had difficulty obtaining [31]. These visits were also opportunities for caregivers to receive emotional support and validation. The resulting supportive relationship likely enhanced the opportunity for the two to work together collaboratively [32]. A collaborative relationship may encourage more effective follow-up visits and reinforced the continued use of assistive technology by the care receiver [7]. Asking the caregiver to actively participate, however, may create an additional source of caregiver burden in the short term. Problems with limited assistive technology funding and with the timeliness of interventions are well described in the literature [19,27], so it was surprising that even more caregivers did not identify these as concerns. One explanation is that some caregivers have difficulty determining what represents a reasonable wait time or identifying potential subsidies for services and devices. The relative lack of emphasis about funding may reflect the ability of some participants to afford the costs of AT, and of others to obtain some equipment through the public healthcare system. Another explanation may relate to what has been described as a shifting of state responsibility for certain aspects of care provision and well-being onto individuals and families [33]. Thus, caregivers and care recipients may unquestioningly take on the responsibility of determining what assistive technology is needed and of paying for it. If appropriate technologies are not obtained, opportunities for reducing caregiver burden may be missed [10,18,19].

Limitations There are few limitations of the study. There may have been problems with the accuracy of participants’ recall, especially for those interviewed at the end of the study. It is also possible that some caregivers’ perceptions were affected by a social desirability bias in which participants may have emphasized the positive impacts of assistive technology based on the focus of the research. It is possible that the themes may have shifted somewhat if more interviews were carried out.

Future research There are many avenues for further investigation. Ethnographic approaches (i.e., long-term participant observations and interviews) could be utilized to investigate (1) the provision process and the involvement of caregivers, and (2) how assistive technology is incorporated into their lives and impacts the caregiving relationship. Interviews exploring the provisioning process could contribute to a deeper understanding of caregivers ’expectations of assistive technology and how it is perceived.

Conclusion Data from semi-structured interviews of caregivers were analyzed to explore their experiences with the provision and use of assistive technology. Caregivers described an enhanced sense of security about recipients’ safety. Caregivers also discussed how they

CAREGIVERS’ EXPERIENCES WITH ASSISTIVE TECHNOLOGY

[11]

used assistive technologies that were provided to care recipients to assist with their own day-to-day activities. The physical benefits from using assistive technology included shifting from direct physical assistance to a monitoring role. Prescriber visits provided an opportunity to receive assistive technology, training, and caregiving advice – interventions that were generally perceived by caregivers as a collaborative process among themselves, prescribers, and care recipients. Finally, caregivers identified two barriers, lengthy appointment wait times and insufficient funding, that encumbered access to assistive technology.

[14]

Acknowledgements

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[12]

[13]

The authors would like to thank Jessica Bilkey for her technical assistance and helpful comments. [16]

Disclosure statement


The authors report no conflicts of interest. [17]

Funding This work was supported by the Canadian Institutes of Health Research operating grant under grant number NRF-11147.

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