The wheelchair user experience
Participants in the two user groups identified a variety of issues that had impacted their transition to wheelchair use, which are summarized in three overarching themes (Fig. 1).
Theme 1: on my own
Seven of the ten participants indicated they had received little preparation for the demands of navigating their wheelchair in an “ambulatory world”. Three participants shared similar experiences receiving some degree of wheelchair mobility skills training (having all attended the same rehabilitation centre), such as Tim who said: “I came through [Rehabilitation Facility] and learned quite a bit from the staff but found that getting out at home and the park and other places, encountered things that I didn’t experience [in Rehab]”. However, most participants reported little or no specific skills training to prepare them for navigating barriers in the community, even those who had received formal instruction in hospital. Michelle said she learned “by trial and error, I don’t remember any formal or informal contact with any professional”. Frank reflected on how “I realized I have to do this now because … it’s with blood and tears all the time, you know, we own this … a lot of getting used to different things.” Mike highlighted the frustration of not having access to potential resources: “I know there is a lot of training and knowledge out there but it seems it isn’t handed out, there was no system of giving [training]”.
Learning to use a wheelchair was perceived as an experiential undertaking–in order to learn how to navigate the world you must explore your environment, as Frank puts it: “Hey, I had to do it [then] because look, somebody’s … not going to be there all the time, so we need to know [how to do it]”. Participants spoke often about the need for exposure to new situations so they could master wheelchair maneuvers and generalize the skills they had acquired to novel and increasingly challenging environments:
“[the most effective way to learn skills is] going out and doing them … the first time I do something I usually try to take somebody who … can help me get through it if I really have difficulty … and then once I know that I can cope, then I can do it on my own forever after”. [Louise]
Other experienced wheelchair users, particularly contemporaries, were a source of some benefit. In particular, the three participants who had received formal training during their rehabilitation stay identified peers within the facility that provided some form of instruction and motivation. Participants recalled that learning sometimes transpired through intentional means. For example, Vern identified: “peers and mentors that would show you tricks that they learned over the years having used a wheelchair”. However, this wasn’t always engendered through a direct relationship and in some cases mentoring was more subtle and detached:
“If you see some active people doing things and start to think about what it is they’re doing differently … because they’re not going to explain it to you, it’s something that you learn by … seeing them doing it”. [Tim]
An interesting conundrum emerged during the participants’ exchange; support from significant others was identified as both a help and hindrance to wheelchair mastery. Michelle stated she never really learned wheelchair independence until she moved out after university:
“[At home] if I needed to go up a ramp, somebody was there to push me … it wasn’t probably until I was in my twenties and had my own apartment and then had a car that I then started doing things on my own”.
Another example of this dichotomy, for those who acquired a wheelchair later in life, revolved around having a partner. Frank related his experience 25 years earlier as a single man learning to adapt to mobility with a wheelchair, where practicing was particularly difficult and fraught with risk: “I was quite prone to accidents because I did some things just where I had to learn, and I learned the hard way because when I got out of the hospital, my wife took off so I was on my own”.
Theme 2: more than meets the eye
Participants identified that effective wheelchair use resulted from a multifactorial interplay between the individual, the activities they pursue, and environmental variables. Environmental factors related to accessibility, such as ramps and curb cuts, were essential to have the opportunity to practice mobility skills, as well as the wheelchair device itself. The type of wheelchair obtained, such as a lightweight rigid-frame chair that required less effort to push and allowed for greater customization, impacted participants’ capacity for active mobility:
“Choosing the right chair for the right person is very, very important. I hate those old clunkers that they give to people and they can’t do anything with them, they’re so heavy and so awful and they can hardly wheel them”. [Allen]
Participants further stipulated that proper configuration of the wheelchair could enhance performance. Adjustments by the clinician, such as position of the rear drive wheels, could influence ease of propulsion, maneuverability, and ‘tippiness’. Frank related his experience returning to work after acquiring his wheelchair: “I had so many falls because … I’d go and pick something up from the floor and I fell over because the wheels weren’t set properly”.
Intrapersonal attributes, such as level of impairment and strength, were perceived as relevant to the process of adapting to wheelchair use and impacted the kinds of mobility skills that were reasonable to acquire. Age-related changes further affected performance and required continual adjustment to wheelchair use:
“Complications that came about [from] aging in a wheelchair - the shoulders give out, the wrists give out, and so it’s trying to adapt to those things … now I have to almost do it a different way again in order to maintain that level of independence you’d like”. [Ted]
Brent noted that some skills acquired earlier in life were now used reluctantly or not at all because older wheelchair users were less physically able and more risk-averse: “I can’t bend over as much as I used to, I can’t jump curbs, going up ramps is a little bit difficult ‘cause I can’t lean forward as much as I used to, to get my balance”. Allen articulates his growing concerns about higher-risk activities as he gets older:
“I’m afraid of a wheelie … even though I’m [an experienced user] because I’m always thinking ‘am I going to get wheeled too far and go right over?’.”
The issue of confidence in one’s capacity to learn and perform more advanced wheelchair maneuvers was salient. Louise observed “You get into situations where there’s generally a solution but if you haven’t had any experience then you’re hesitant, right?” Self-confidence was linked to internal and external stereotypes of aging. Participants noted that they had their own preconceptions about lacking the capacity to acquire and master advanced skills–these were things that young people did but would be too difficult for older adults. Allen articulates this position, that “you’ve got some people who say ‘I’m in a wheelchair, I’m old, I can’t do anything, I need somebody else along to push me, I can’t do it’”.
Confidence and persistence in learning to use the wheelchair were also linked to the psychological and affective predisposition of the individual. Participants related that acceptance of the wheelchair was a primary key to improving mobility, and the loss associated with compromised ambulation was closely tied to investment and motivation in learning mobility skills. Frank recalls this emotional transition:
“My friends said ‘look at him in a wheelchair’ and laughed at me, you know? I didn’t realize, my god this is a way of life I have to live for the rest of my life … I got myself started this way, and I eventually started to feel comfortable in my own skin”.
Such notions were borne not solely from self-image, but also broader cultural perceptions of what older adults are capable of:
“Because [we’ve] had all these preconceived notions about wheelchairs and what you can and can’t do … by being in the world or seeing things or watching TV … [we’re] going to think ‘oh, I’m never, I’m not doing that’.” [Michelle]
Theme 3: interdependence
A third emergent theme was the sense of interdependence between those who use a wheelchair and those who don’t. Participants reflected on the importance and necessity of collaborating with non-users. Several subtle variants on this theme came to light: learning to accept and use assistance; knowing how to instruct the novice helper; and knowing how to ask for help. As part and parcel of embracing the transition to wheelchair use, learning when to seek assistance from others was pertinent. Allen recognized situations where the risk of injury was unreasonable, such as icy streets in winter where his wheelchair was prone to slide during transfers into the car, so he chose to stop a passer-by to aid in stabilizing his chair. Participants also identified situations where they might be capable of independent mobility but it was simply easier, safer, or more expeditious to ask for (or accept) assistance. This was perceived as being selective about when and where to expend effort, rather than inability: “I never refuse somebody who is going to push me up a ramp. Why, if somebody is there to push me up a ramp, should I be working - I mean, I can do it, but so what?” [Allen]
There was overwhelming agreement that it was equally important to learn how to instruct others in providing safe and effective assistance. Taking control and being directive with the helper was identified as critical, particularly in situations where the risk was elevated:
“I’ll ask people for help myself and they’ll approach the [ascending] stairs forwards and I’m thinking ‘don’t do it that way’, so I say ‘no, you’ve got to turn me around, one person here, one person here’.” [Michelle]
Finally, participants spoke about learning how to request assistance from others, and advocating courtesy when assistance is offered, even when it was not required or desired. Allen offers this advice:
“Wheelchair manners [are important] too - if you don’t want [help] to do it, thank the person, accept gracefully and appreciate them … a responsibility to be courteous as a wheelchair person … because they’ll go offer somebody else”.
Furthermore, Michelle speculated that a negative encounter might have future repercussions:
“Invariably there are people out there who have offered help to somebody who is disabled and had their head chewed off for it so the next disabled person they see, they’re very reluctant – they’re just ‘Oh I don’t need that again, I’m going to walk on by’.”
The care provider experience
Care providers also identified a variety of issues and experiences that accompanied transition to wheelchair use by the older adults with whom they were closely involved, as illustrated through two broad themes (Fig. 1).
Theme 1: all encompassing
Care providers reflected on how their level of responsibility increased dramatically with the transition to wheelchair use. The demands that now fell their way were substantial, particularly in how responsibilities felt unrelenting and pervasively entered so many areas of life. Some of these responsibilities were foreign to the care providers, but assuming them was the only viable option. Patricia recalls the demands incurred when her husband transitioned to using a wheelchair: “It’s all very practical, there’s repairing the chair – if he gets a flat tire … those little things – they don’t happen everyday, but when they happen you’re usually the one who’s around”.
Most apparent were the physical demands of providing assistance such as assisting the user to transfer in and out of their wheelchair; pushing or maneuvering the wheelchair in difficult or less-accessible situations; or driving to a destination and having to dismantle and lift the wheelchair into a vehicle. Bertha, already into her 80s, spoke about helping her daughter: “You have to have strength enough to – [help] if they get into difficulties … [she] has tipped out of her chair several times over the years and you have to be able to get her back into the chair again.” There was concern about the significant risk with assisting and how this hazard was exacerbated with aging–their own physical ability to perform tasks and the user’s diminishing capacity:
“If they fall out, there’s some problems … as he’s gotten older – needing help with transfers … I think part of it is the physical strength, but also … figuring out how he can best help me and then me not having to hurt myself”. [Patricia]
Despite these physical demands, care providers identified greater concern about the other requirements placed on them, such as the need to schedule, organize and manage the MWC user’s life. Even when the user was capable and largely independent, care providers felt that ultimately they assumed responsibility for organizing appointments and transportation matters or anticipating issues that might impact participation in activities outside the home. Patricia spoke about situations where shops and businesses were inaccessible, such as a step or series of steps to get into a fast food restaurant. In addition to purchasing the food, she also felt compelled to make all the decisions:
“You go to a deli – ‘what kind of sandwich would you like?’ – because he can’t get in the door – so then you gotta remember the type of sandwich … it’s like ‘with fries, without fries’ – you have to kind of guess what [he] would like”.
Frequently, negotiation between the care provider’s own social activities and those of the MWC user required compromise. Care providers who were a spouse or parent of the user talked about how these responsibilities were ‘part of the package’ of their relationship. However, Felicia also revealed that, at certain times in her life, she wondered about the fairness of her circumstances:
“[For] 5 years … the whole situation depended on me to be there every second for every movement … I don’t think it was time [commitment], it was more of the ‘hey did I sign up for this?’ … We’ve been married for 48 years - was that what they meant in the vows? Was I going to do this forever?”
Theme 2: even the best laid plans
Uncertainty and pseudo-accessible environments [23] exacerbated this sense of all-encompassing responsibility; despite scheduling and organizing activities, these plans were invariably subject to revision and sabotage. Patricia reflects an example:
“No matter how much you phone ahead and [ask] ‘are there any stairs?’ – ‘No problem, you can get in’ – so we get there and there’s two stairs into the front door … it’s just that feeling of – we even phoned ahead and it’s still a problem”.
Jamie described a situation where several wheelchair users for whom she provides care were offered complimentary tickets to a theatre show but, upon arrival, were unable to access the ‘accessible’ seating location. Several participants spoke of having to ‘expect the unexpected’ and the unpredictability of community environments. In addition to having to make multiple decisions, care providers were also required to make them ‘on the fly’ in a dynamic and time-sensitive context.
“[My husband] wheeled over some thorns in a park – ‘pop’ – the tire blows up. So then it’s trying to figure out where is there a medical supply place [or] bicycle store –and you’re trying to remember all the details”. [Patricia]
These unpredictable scenarios often occurred in a crowded public location, creating anxiety for both wheelchair user and care provider. Jamie talked about how this meant she was responsible for not only her own anxiety, but also that of the wheelchair user, and the tremendous social pressure to resolve issues expeditiously, which then increased the risk of injury from assisting too quickly or ‘cutting corners’.
These complications compelled care providers to prioritize some activities at the expense of others, and there were invariably missed opportunities for social engagement. Felicia spoke about their experience during her husband’s transition to wheelchair use: “We tended to focus on things you had to do … and learned how not to do a lot of things”. Participants spoke of a narrowing of social circles for both the user and the care provider. Felicia reminisced about her husband’s numerous leisure interests and social groups, and how these opportunities began to vanish because meeting locations were insufficiently accessible. Diminishing opportunities for socialization also applied to mutual activities where socially invoked expectations of participating ‘as a couple’ precluded an invitation.
Even social gatherings with family and friends were influenced by the transition to wheelchair use. Bertha identified the homes of her children had stairs at the front door and were not wheelchair accessible. Patricia noted both she and her husband were becoming more risk-averse and were not willing to have him be ‘carried up the stairs in his wheelchair’ when visiting family: “we don’t go there anymore because we’re all getting older - he doesn’t want to fall out of his chair”. As a result, family gatherings and rituals, such as Thanksgiving dinner, were no longer held in a family member’s home but an accessible restaurant instead. While they continued to share these collective events, the dynamic was clearly different and there was a sense of loss that came with celebrating intimate events in a very public venue.