Identification and assessment of Electronic Aids for Daily Living considered essential by persons with high level tetraplegia: a case series

Abstract

Although assistive technology (AT) is recognized as a basic human right, access to AT, and particularly electronic aids to daily living (EADL), is limited. We aimed to understand how persons with high level spinal cord injury (SCI) prioritize EADL needs and assess satisfaction and efficacy of self-identified EADL. Thus, in this case series, we recruited three participants with C4, C5 or C6 SCI receiving in-patient SCI rehabilitation. Each received dedicated occupational therapy-based assistance in identifying EADL items within an unrestricted envelope of support ($5000 CDN) for use in maximizing physical independence and supporting their return to community-based living. Items identified were categorized by need (emergency/security; home environment control; or virtual access to the outside world). Each participant selected distinct EADL. Evaluation of selected EADL items indicated very high satisfaction. The selected EADL contributed to participants’ returns to employment, community life, or reduced requirements for attendant services. These findings suggest that identification of essential technology should reflect the unique needs of each person and the context in which it will be used. These findings also support use of mainstream technology to meet EADL needs of individuals with limited physical abilities.

IMPLICATIONS FOR REHABILITATION

• Initial spinal cord injury (SCI) rehabilitation should provide individualized identification and selection of electronic aids for daily living (EADL) for those with very minimal arm and hand function, including mainstream voice-activated technologies, to increase independence and function.

• Individualized self-selection of EADL, rather than general prescription-based provision of EADL, is most appropriate for identifying key EADL that will enhance function and independence in the community.

• Support from occupational therapists with expertise in SCI rehabilitation can provide expertise in identifying and setting up EADL, including in the community, to ensure selected EADL function as intended.

Keywords:

• Spinal cord injury
• physical disability
• physical independence
• community living
• community participation
• quality of life

Introduction

Assistive technology (AT) has been recognized worldwide as an enabler of human function by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) [1]. However, although denying access to essential technology may be deemed a basic human rights violation, access to, and provision of, AT is determined differently in different jurisdictions. For example, although Canada has a publicly funded and universally available healthcare system, each province or territory has flexibility in determining what is considered “essential” (and therefore eligible for public funding) as well as the ability to decide how that service, supply or equipment is provided. The payor also determines whether a device or product is funded through insurance-based systems. Within each system, essential items are typically prescription-based and dependent upon the individual’s characteristics rather than considering the individual’s living situation and AT related to their unique setting. Also, for a particular device or set of devices to be deemed eligible for funding within the public healthcare system, often research evidence on its efficacy, safety and selection for use is required.

There are different categories of AT, and the specific area of interest for this study is Electronic Aids for Daily Living (EADL). Generally, EADL can be categorized by need met: related to access to emergency/security supports; control of the home environment control; and virtual access to the world outside the home. EADL provide individuals with limited physical function a means of controlling electronic or physical devices that are essential for safety, security, and control of one’s environment such as operating lights, opening doors, and activating emergency call systems through mobile communication or computing devices. Given that EADL are intended to provide independent control of the home environment for persons with very limited physical function (e.g., high level tetraplegia caused by spinal cord injury (SCI)), methods of controlling EADL need to be reliable and effective, and are typically activated by physical function(s) available to the individual (i.e., voice commands, head nodding, or hand, elbow or mouth movement) [2, 3].

Benefits of using EADLs include decreased workload on family or caregivers, [3, 4], improved ability to be alone safely, improved social connections, increased autonomy and independence, and improved health and well-being [2, 3]. To be effective, EADL often requires appropriate user training and readiness [5].

Since the 1960s, EADLs have transitioned from large, expensive stand-alone devices hardwired to the electronics they control, developed specifically for use by those with physical disabilities, to small and portable devices controlled wirelessly [6]. Recently, mainstream internet-based home control devices, including tablets, smart phones and WI-FI-enabled home devices, have become more widely used as EADL by people with disabilities and have largely replaced all-in-one EADL units. Mainstream technology may have advantages over products developed specifically for people with disabilities, including lower cost, ease of use, better reliability and less stigma attached to using them [7]. In our jurisdiction, switch-activated EADL for the home were publicly funded and built, set up, installed, and maintained by electronic technicians within an AT centre whose mandate was to modify commercially available products to render them useable by persons with physical disabilities. Although the device itself was not funded (i.e., the doorlock, thermostat, etc.), all components required to make it accessible by switch activation for the user, and the technicians’ time were funded by our provincial regional health authority until 2010, when voice-activated home control systems had become widely commercially available, and technologically outdated switch activated systems began to be phased out. Once equipment that performed these functions (e.g., voice-activated door locks) became commonly commercially available, switch-activation systems to operate door locks, etc., for use within the home for persons with high-level tetraplegia were no longer eligible for fabrication within the mandate of the assistive devices program.

Despite increased prevalence and potential for benefit, there is a lack of EADL-related literature on recently developed technology (e.g., Amazon Alexa or Google Home) as used by people with physical disabilities, which may be due to the volatility and recent emergence of the field [8, 9]. Research may also be hindered by the generally held belief that these mainstream items are considered a convenience or luxury, rather than a necessity. A recent environmental scan conducted by Canada’s Drug and Health Technology Agency (CADTH) indicated that each province uses different funding and service delivery processes for AT generally, and there is insufficient research relating specifically to EADLs to provide consensus on definitions of “essential” (i.e., eligible for public delivery/fundable) items and to determine eligibility criteria [10]. There is also no standard of care regarding EADL service delivery (i.e., assessment, identification, set-up, training, maintenance of EADL).

Thus, this study aimed to determine items that individuals with high level SCI identify as an “essential EADL need” and whether self-identified essential or of critical and high priority EADL were effective. We also assessed the relative contribution of EADL occupational service delivery in successful use of EADL.

Materials and methods

A collective instrumental case study design [11] was selected to allow detailed examination of the criteria each participant used when identifying EADLs as necessary for use in their home. Three cases were used to broaden the range of responses and case settings. Our choice of three participants was based on (1) study duration and resource limitation constraints, and (2) Our interest in providing sufficient support in each person’s device selection, installation and setup, and troubleshooting over a sufficient period to optimize the likelihood that the devices would work for each person. Study procedures used were reviewed and approved by the University of Manitoba Health Research Ethics Board (HS21983) and Health Sciences Centre Research Impact Committee. All participants provided informed consent in accordance with the Declaration of Helsinki.

Participant selection and recruitment

We recruited participants with C6 or higher-level motor-complete acute SCI (< 6 months post SCI, AIS A or B) from the region’s in-patient SCI rehabilitation hospital. Potential study participants were identified when referred for assessment of their physical assistive technology needs as part of the standard of care SCI rehabilitation services. Eligible participants needed to require assistance in basic activities of daily living (ADL) (i.e., ≥ 1 home-based AT device such as a switch-activated door opener to be eligible for discharge) and be undergoing first-time in-patient rehabilitation. Potential participants were excluded if they had access to insurance-based disability-support coverage which would typically cover these items outside the public payor system (i.e., motor vehicle, worker’s compensation, or other insurance). Each case study began during in-patient rehabilitation and continued 6 months post-discharge in the community.

Within our study region, individuals are eligible to receive a very basic manual or power wheelchair through a provincial loans program administered by a third-party non-governmental charitable organization to meet their basic mobility needs if they meet their outlined eligibility requirements (i.e., require the use of a wheelchair at least 8 h daily, living outside an institution, etc.,). Basic items such as wheelchair cushions, backrests, or renovations to enable physical access to or within a home are also not universally funded in our geographical region. There is also limited coverage for an essential communication device (i.e., a smart phone) when it is deemed necessary for emergency use or personal safety. However associated costs such as cell-phone monthly fees or data plans are not covered. Therefore, a variety of public funding, self-funding, and local fundraising was used to meet these very basic equipment needs, and our allowance was used to purchase items beyond these fundamental physical requirements.

Data collection and analysis

Recruited participants completed a semi-structured interview regarding identifying and prioritizing AT and EADL in relation to their particular needs and setting (Appendix A). Interviews were conducted by an experienced AT clinician, audio-recorded, and transcribed verbatim. Participants also completed the Canadian Occupational Performance Measure (COPM), which is a user-centered outcome measure validated to detect changes in performance and satisfaction in occupations that an individual self-identifies as being important and difficult to perform [12]. A two-point (2.0) change in COPM scores indicates a clinically important change.

Each participant was then allocated $5000 CDN to select and purchase self-defined critical or prioritized AT not available through the public health system. Our allocation was based on the following criteria: (1) Our knowledge of the approximate cost of EADLfor those with high-level SCI that is routinely covered by 3rd party insurers in our jurisdiction; (2) Our requirement to provide an envelope that would require prioritization of each person’s EADL needs; and (3) Research budget constraints. Each participant worked with an experienced AT clinician to select, customize and receive training in using each device. The AT clinician was responsible for initial installation, set-up, and effective use of each EADL. Additionally, monthly follow-up visits for up to six months post-discharge were provided through a variety of communication methods which best suited the participant, and included telephone conversations, text-messaging, e-mails, virtual meetings, and in-person visits.

At the final visit (6 months post-discharge), a second semi-structured interview was conducted to explore the effect(s) of the chosen AT on the participants’ daily functioning. The Psychosocial Impact of Assistive Devices Scale (PIADS) [13] and Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0) [14] were also administered. The PIADS, a self-report questionnaire, uses a 7-point Likert scale of established psychometric properties, with scores ≥ +1indicating increased sense of competence, adaptability, and self-esteem. The QUEST 2.0 [14] uses a 5-point Likert Scale to evaluate user satisfaction with an AT’s performance; the user’s perceived importance of each performance criteria; and user satisfaction with the AT service provision they received.

Interviews were analysed using a directed content analysis approach [15], and integrated with scores from each assessment tool for each case as a unique unit. Cases were then cross-analyzed to identify themes or points of convergence and divergence.

Results

Key characteristics and outcome reporting measures of the three participants are summarized in Table 1. The following outlines each participants’ physical situation, personal environment, and other factors identified to influence prioritization of selected EADLs.

Table 1. Key participant characteristics and outcome scores.

	Participant 1	Participant 2	Participant 3
Key characteristics (AIS*, age, living situation)	C4 AIS A SCI, 20 Years, lives with family in rural location	C6 AIS B, 30 Years, lives alone in urban location	C5 AIS A, 24 Years, lives with family in rural location
COPM (Change Score)	Performance 2.8 Satisfaction 2.5	Performance: 3.6 Satisfaction: 3.4	Performance 3.0 Satisfaction 7.2
PIADS (scores from −3 to 0 to +3)	Competence: 2.17 Adaptability: 0.83 Self-esteem: 1.63	Competence: 2.5 Adaptability: 2.2 Self-esteem: 2.00	Competence: 2.1 Adaptability: 1.5 Self-esteem: 0.75
QUEST (max score = 5)	Technology Porch lift 4.6 Auto doors 4.4	Technology Lights 3.5 Google Home 3.3 Smart Phone 3.8	Technology Apple Watch: 3.9 Trackball: 4.5
	Contact mainly by text Services: 5 “Flexible” “Easy to get hold of when needed”	In person and email contact Services: 4.2 “More time for trial equipment” “Very limited $”	Contact mainly by text Services: 3.5 Able to figure a lot out on his own by looking up on the website. No major issues encountered

* ASIA Impairment Scale (AIS) [17].

Participant 1: Sam (pseudonym) was 20 years in age at time of C4 ASIA Impairment Scale (AIS) A SCI. Sam lived in a rural, agriculture-based, communal community, where gender roles were clearly defined and where he previously performed manual labor. The outdoor terrain is rough, lacks built infrastructure, and homes do not have Wi-Fi access. He had a supportive family, was internally motivated, and liked to use technology Sam’s main goals were to be independent with home entry and egress, have access to an emergency call system, be able to fish and hunt outdoors, and complete basic self-care tasks. For basic mobility, Sam received a power wheelchair for full-time use from the publicly funded provincial wheelchair loan program. He received physical assistance for his basic ADL through a combination of family/friends and publicly funded attendant services. In addition, Sam qualified for public funding for his medical supplies and a portion of his seating system (i.e., seat cushion) for his power wheelchair. Items that were not publicly funded included renovations required to make his home wheelchair-accessible, computer technology and his EADL. Sam purchased the following essential technology with his $5000:

• Emergency/Security: automatic door and lock, wireless call alarm with modified switch, custom modifications to drive his power wheelchair and operate his porch lift from his wheelchair, cellphone, and smart watch.

• Home environment: switch-controlled lights, Echo smart speaker, switch-adapted bed controls.

• Outside world/virtual access: trackball mouse, wireless keyboard.

At the follow-up interview, Sam prioritized EADL that allowed him to independently enter and exit his home, reporting that his essential technology provided “peace of mind”, and that he no longer felt like a burden to others. He noted that the proper placement of switches was needed, otherwise he would be “stuck,” and wished for wireless technology so he didn’t need to have “wires all over the place.”

Participant 2: Maureen (pseudonym) was 36 when she sustained a C6 AIS B SCI. Prior to injury, she was employed in an administrative role. She received a power wheelchair from the provincial wheelchair loan program, and received publicly funded attendant services for basic ADL. In addition, Maureen qualified for public funding for her medical supplies and a portion of her seating system (i.e., seat cushion) for the power wheelchair. To facilitate discharge from hospital, she moved from an inaccessible to an accessible apartment. Items that are not publicly funded include EADL and computer technology to enable her to work from home. She identified being independent, feeling safe/secure in her apartment and resuming working from home as priorities. She purchased the following essential technology with her $5000 budget:

• Emergency/Security: cellphone, phone case and magnetic phone charger, electric urine collection bag emptier.

• Home environment: Google Home, light modules, smart plugs, custom hair dryer stand.

• Outside world/virtual access: Samsung tablet, printer/scanner, memory card

At the conclusion of the study, Maureen reported that her most important AT helped with her safety and security in the home, and that being able to complete the “little things” (i.e., self-care tasks) was important. She reported that while set up and pairing AT was frustrating at times due to unreliable Wi-Fi, nonetheless AT enabled choice again. In her final interview she indicated the allotted budget was not enough to cover all the essential AT she deemed essential, such as custom vehicle modifications for driving a vehicle independently.

Participant 3: Nic (pseudonym) was 24 at time of his C5-level, AIS A SCI. Nic lived in a 2-storey home, with a supportive family, in a rural setting, and had recently graduated with a degree from a post-secondary institution. Nic returned to this setting, with home accessibility provided through a donated lift, a power wheelchair from the provincial loan program and physical assistance for basic ADL provided through family/friends and the publicly funded attendant services program. Nic qualified for public funding for his medical supplies and a portion of his seating system (i.e., seat cushion) for the power wheelchair. Items that were not publicly funded included renovations to make his home wheelchair accessible, computer technology and his EADL. Nic’s strengths were that he considered himself a “techie” and was highly motivated. Nic’s goals were to complete basic self-care tasks, be independent with transfers and mobility in the home, return to active recreation and socialization with friends, and returning to work. He spent his $5000 budget as follows:

• Emergency/Security: Smart phone, smart watch, various threshold ramps.

• Home environment: Google Home, light modules, tv controls, custom switches for bed controls.

• Outside world/virtual access: various specialty mice (trackball, touchpad, 3d space mouse), high-end computer to run 3D-software and graphics.

Upon completing the study, Nic had achieved his goals of returning to his chosen career. He also stated the importance of being able to “do something” instead of having others do it for him. His chosen essential AT allowed him to regain social roles and connections with family and friends and to feel “like I did before the injury.” His biggest frustration was unreliable Wi-Fi in the rural area making AT set-up a “pain.”

Discussion

Findings indicated that despite similar level SCI and functional status, each person’s unique goals, circumstances and context determined what they deemed to be “essential” EADL such that essential technology was defined differently for each participant depending on their differing contexts. This study’s contextual differences included physical home accessibility, internet connectivity, community infrastructure, available social supports, and cultural or religious influences. For example, one individual who reported feeling safe at home, with multiple family members to provide physical support and in his rural community, did not rate safety and security as a top priority. Instead, he prioritized being able to work from home (i.e., virtual access to the outside world) as most important. Of note, in our jurisdiction, none of the items selected by our participants were eligible for public funding.

Further, the level and extent of occupational therapist EADL service delivery was well beyond “standard of care” for our jurisdiction as multiple methods of communication were implemented and the length of time to follow-up with each participant was longer than the standard timeline, which typically consists of follow up until discharge to the community. The current AT service delivery model in our jurisdiction is consultative, which typically involves an in-person assessment for all AT needs such as specialty- control operation of a power wheelchair, EADL, and computer access devices. Some one-on-one trial and training can occur if an individual is admitted for a longer-term inpatient rehabilitation, and then final recommendations are made for devices that would benefit the individual. Unlike our study procedure, enhanced training and setup including home visits is not standard of care for all individuals as they are not followed long-term after recommendations have been made.

Due to the difficulties in predicting mid-term changes in strength and physical capabilities within the first year after spinal cord injury, it may be unrealistic to expect individuals to make decisions on or predict the technology most essential to them in the early stages of rehabilitation. Following SCI there is a process of relearning to make personal decisions; time is an important factor in this process [16]. When decisions are made based on health-care system constraints, such as needing to decide on home technology while an in-patient for reasons related to funding and access to experienced therapists, selection of optimal technology for home use may be lost. Overly stringent gate-keeping and prescription-based approaches to EADL may also lead to less functional, less cost-effective solutions when compared to individualized, needs- and function-based EADL selection that also provides occupational therapist-based training and service delivery. People need the opportunity to try out technology in the contexts in which they will use it. In our study, supported decision-making on the technology most useful to achieve meaningful goals occurred over a six-month post-discharge period. We intentionally designed our study to support this decision-making by encouraging participants to select their essential technology after gaining some experience of living with a new and complex physical condition in their home environment. We also provided funding for technology in that period, and offered unlimited access to an experienced SCI-trained occupational therapist to promote decision-making and problem-solving.

CADTH recently provided several recommendations to increase equitable access to EADLs within the context of the Canadian universal healthcare system, including user-centered assessments that consider personal preferences and contexts in order to ensure appropriate and effective device selection, technology training, service delivery and reassessment as each person’s needs or function changes [9]. Satisfaction outcome measure assessments in our study were all positive and support these recommendations. The COPM allowed for user-centered assessment, based on individual goals and contexts. The clinically relevant changes in performance and satisfaction we observed in our assessments support this recommendation. Furthermore, by providing participants with what they considered essential EADL, it allowed them to focus on other goals such as driving a vehicle independently or going fishing with friends. The study was designed to ensure participants had access to “just-in-time” advice to support their effective use of the provided technology. Follow-up with an experienced occupational service provider, on an as-needed basis over a six-month period post discharge was an important part of the process. Participant-initiated communication was based on each person’s preferred method (i.e., phone calls, text messages, e-mails, virtual visits and direct visits) which was reflected in the positive QUEST service delivery scores. The QUEST device scores indicated positive satisfaction regarding the technologies they received that they deemed to be most important. Finally, the impact of using essential technology, as measured by the PIADS, positively influenced the participants’ overall sense of competence, adaptability, and self-esteem. These findings are consistent with the conclusion that AT increases independence and greater participation in everyday activities which leads to a higher quality of life [4].

Inequities and inconsistencies exist in the Canadian health care system for funding EADL: some jurisdictions provide funding for medical-grade or dedicated EADL but there is a lack of funding for commercially available, mainstream devices that could provide similar or improved performance despite the fact that mainstream devices are likely at a much lower per-unit cost.[9] In this study, all essential technology items selected were common, readily available technology, supporting the need to utilize and fund a wide-spectrum of technologies, beyond dedicated EADLs. The choice of these commercially available devices may be due in part to their better, more streamlined design, based on product developers inputting sufficient resources to design and produce items that people “want” to use. In contrast, dedicated EADL are typically designed and fabricated as prototypes within a resource-restricted environment without the gains in design afforded by mass production and extensive focus-group based user-focused refinement. While advocacy for increased access to mainstream devices may be warranted, access to these devices should form one component of a larger group of essential physical and electronic AT. Identification and selection of AT and EADL would better meet the needs of each individual if it were process and outcome-driven, rather than prescription-driven.

Conclusions

The definition of essential technology should be based on the unique context of each individual, rather than from a prescriptive general list of items. When given a choice, participants selected items that allowed them to participate more fully in community life. Considering these relatively low-cost interventions, the positive societal gains more than compensated for the societal costs of the EADL. Low cost, readily available technologies may be preferable to standalone, dedicated EADLs but effective use requires appropriate access or interface methods, integration with other technologies used (current and in future), and readily available training support and maintenance. Mainstream technologies will continue to develop and evolve and must be one component of a comprehensive system designed to provide and support the use of essential technologies. These findings support the need for a basic publicly-funded initial disability allowance as a mechanism that enables individuals (based on specific level of function/ability) to identify and fund items that meet their specific functional needs within the context of their unique living situation to optimize health, life quality and their ability to contribute to society. A corollary of this would be an annual allowance to support maintenance, upgrading and replacement of EADL over their lifespan.

Acknowledgements

We thank our study participants for their support and time during this study. Dr. Kristine Cowley is supported by funding through the Canada Research Chairs Program. A version of this research was presented at the 2023 RESNA Conference, New Orleans, LA.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Funding for this project was received from the province of Manitoba through the Rick Hansen Research Institute.

Appendix A.

Case series interview guide

1. Can you talk about how you manage the following activities within your daily routine, including how long you spend on each activity in a normal day?

   1. Safety/security/physical access activities (e.g., emergency call, door opener, telephone)

   2. Environmental control activities (e.g., bed, temperature, lighting, blinds, stereo, tv)

   3. Access to the outside world (e.g., computer, social media)

2. From your perspective, which of those are the most important activities?

3. Can you talk about any assistance you receive?

   1. Who or what do you use to help you with those activities? (e.g., do it by self, another person, use technology)

   2. What formal care do you currently have in place?

      1. What role do your formal caregivers take in completing these activities?

      2. Can you estimate how much time they spend on these activities per day or week?

   3. What informal carers do you rely on (e.g., spouse, family, friends, neighbours) to do these everyday activities?

      1. What role do your informal caregivers take in these activities?

      2. Can you estimate how much time they spend on these activities per day or week?

4. Do you think the technology you use reduces the amount of help you need from someone else?

   1. If yes, in what ways? (e.g., amount of time you need caregiver’s help, caregiver helps in a different way)

5. What would you like to be able to do (related to these activities) but feel you are not able to do?

   1. What is stopping you from doing these activities?

   2. What would make the biggest difference in allowing you do these activities as you wish?

6. Do you think the technology you currently use could be improved?

7. Is there anything else about using your device that you would like to talk about?