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Navigating uncharted territory: a qualitative study of the experience of transitioning to wheelchair… Giesbrecht, Edward M; Miller, William C; Woodgate, Roberta L Jul 28, 2015

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RESEARCH ARTICLE Open AccessNavigating uncharted territory: a qualitativestudy of the experience of transitioning towheelchair use among older adults and theircare providersEdward M. Giesbrecht1*, William C. Miller2 and Roberta L. Woodgate3AbstractBackground: An increasing number of older adults are procuring a wheelchair for mobility; however, thecorresponding impact on related injuries, caregiver burden, and participation restriction is concerning. To informthe development of a wheelchair training program, we pursued a clearer understanding of the experiencetransitioning to wheelchair use for older adult users and their care provider.Methods: Six focus groups were conducted with older experienced wheelchair users (n = 10) and careproviders (n = 4). Transcripts were analyzed using a Conventional Content approach; a coding frameworkenabled inductive theming and summary of the data.Results: Three themes emerged from the user group: On My Own reflected both limited training and thenecessity of venturing out, More Than Meets the Eye addressing barriers to use, and Interdependence betweenwheelchair users and the ambulatory community. Care provider responses fell into two themes: the AllEncompassing impact of assumed responsibilities and Even the Best Laid Plans, where unpredictable andinaccessible environments sabotaged participation.Conclusions: The transition from ambulatory to wheelchair mobility can feel like uncharted territory. Balancedsupport and appropriate mentorship are fundamentally important and real-world encounters optimize independenceand proficiency with skills. The impact on care providers is extensive, highlighting the importance of skills training.Keywords: Wheelchair, Participation, Training, Social support, ConfidenceBackgroundThe wheelchair is becoming an increasingly commonassistive device for older adults. With age, the risk of adisabling health condition increases and mobility is themost prevalent area of impairment among older adultsin Canada [1]. A 2004 study reported that among mul-tiple assistive device users, the manual wheelchair(MWC) was considered third most important, followingeyeglasses and canes [2]. In fact, the wheelchair icon hasbecome synonymous with accessibility. The number ofwheelchairs provided to address mobility issues amongolder adults is rising. In 2001, an estimated 81,000Canadians 65 years and older required a wheelchair formobility [3]. The introduction of an assistive device isintended to improve mobility, function and quality of lifeas well as reduce the need for personal assistance anddiminish burden for care providers [4]. However, theacquisition of a wheelchair does not necessarily meanthe user will become independently mobile or improveperformance of functional activities. In both Canada andthe United States, over 90 % of older adult MWC usersexperience performance restrictions in at least one majorlife activity [1] compared with only 15 % for those whodon’t use a mobility device [5]. To accomplish these ac-tivities, assistance must often be engaged from a familymember or other care provider [6]. In Canada, nearly sixin ten older adult wheelchair users require assistance froma care provider for basic mobility [3]. Compromised* Correspondence: Ed.Giesbrecht@umanitoba.ca1Department of Occupational Therapy, University of Manitoba, R106-771McDermot Avenue, Winnipeg, Manitoba R3E 0T6, CanadaFull list of author information is available at the end of the article© 2015 Giesbrecht et al. This is an Open Access article distributed under the terms of the Creative Commons AttributionLicense (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in anymedium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Giesbrecht et al. BMC Geriatrics  (2015) 15:91 DOI 10.1186/s12877-015-0092-2participation and social connectedness have been impli-cated with restrictions in mobility [7], often manifesting inexperiences of isolation, stress and low self-esteem dimin-ishing quality of life [8]. These challenges to independentmobility affect not only wheelchair users, but their familiesas well. A 2006 study of stroke survivors adjusting towheelchair use identified substantial restriction in careproviders’ social roles and an increased burden of care [9].One quarter of all care providers for the elderly in Canadaare themselves over 65 [10] and at increased risk for injurywhile assisting these wheelchair users.Acquisition of a wheelchair, or any assistive device forthat matter, is a complex and multi-step process, includ-ing comprehensive assessment, prescription, procure-ment, configuration, proper fitting, adequate trainingand follow-up [11]. Mortenson and Miller [12] have ex-plored user and prescriber experiences of the wheelchairprocurement process, and identified how physical, envir-onmental and resource constraints often compromisethe ability to secure optimal equipment and achieve de-sired goals. Beyond procurement, learning to effectivelyoperate and maneuver the wheelchair in a variety ofcontexts is a critical factor. In fact, older adults’ accept-ance of assistive devices, such as a wheelchair, dependsgreatly on the adequacy of training provided, particularlyduring initial acquisition [13]. While the evidence indi-cates structured training improves wheelchair mobilityand operational skill, older adults typically receive littleor no skills training. A recent survey of 68 Canadianrehabilitation centres reported only two-thirds offeredbasic skills training (e.g. propulsion), typically for 1–4 h,and advanced skills training (e.g. wheelies) was providedin less than 12 % of facilities [14]. This lack of trainingnot only diminishes the user’s capacity to participate inmeaningful activities, but also place them at greater riskfor injury. The estimated annual incidence of tips andfalls among Canadian wheelchair users is 5.2 %, withroughly 80 % incurring an injury and half resulting in anEmergency department visit [15]. Recent studies in theUnited States estimate the cost to treat such an injury is$25,000–75,000 and there is on average one fatality perweek due to wheelchair-related accidents [16].Despite the documented rise in use, little is knownabout the user experience of transitioning from ambula-tory to wheelchair mobility, particularly among olderadults; supporting such mobility transitions has been anidentified need [8]. Furthermore, the interplay betweenthe wheelchair user and their care provider (who is oftena spouse or family member) during this process is poorlyunderstood. To inform the development of a novelwheelchair skills training program specifically for olderadults [17], we pursued a clearer understanding of thelived experience of this transition to wheelchair use, par-ticularly the challenges and facilitators encountered byparticipants. Our research question examines “what isthe process and impact of adjusting to wheelchair usefor both older adult users and their care providers?”MethodsAs part of a larger training program development study[18] employing a Participatory Action Design approach[19], six focus groups were conducted across two largemetropolitan centres in Canada (Winnipeg andVancouver). We used focus groups as a qualitative re-search strategy because the experience of transitioning towheelchair use is a relatively unexplored phenomenon anddifficult to ascertain through quantitative means. A focusgroup format provided an organic means to elicit partici-pants’ experiences and uncover underlying contributingfactors, rather than seeking confirmation for a priori as-sumptions. Rather than individual interviews, focus groupswere intentionally used to promote exchange and dia-logue, drawing out less vocal participants, and fosteringboth common and diverse experiences. Participants wererecruited through public advertisement and direct invita-tion via consumer advocacy agencies, rehabilitation hospi-tals, and research lab databases. A total of four focusgroups were undertaken with older experienced MWCusers (n = 10), consisting of two sessions, conducted3 months apart in each city. In Vancouver there were sixparticipants and in Winnipeg there were four. Two focusgroups (n = 4) were also conducted with care providers (i.e.a spouse, family member, or paid caregiver of an olderMWC user), one in each city. We had targeted 3–6 partici-pants for each group to ensure a balance between breadthof experience and opportunity for participant engagement,and to be able to pragmatically gather on multipleoccasions [20]. Recruitment of care providers proved to beconsiderably more challenging due to limited avenues ofaccess, poor response to advertisement, and the fact thatmany older MWC users did not have an interested careprovider. Written informed consent was obtained from allparticipants prior to conducting the focus groups andstudy approval was obtained from the Research EthicsBoards at the University of Manitoba (#H2011:357) andthe University of British Columbia (#H11-02558).One of the authors (EMG), with previous facilitationexperience and expertise in the content area [21], facili-tated all focus groups together with a Research Assistant(RA). Each focus group was approximately 2 h in lengthand included an introduction identifying the purpose ofthe study, agenda for the session process, and proce-dures for analyzing and sharing data. Discussion was ini-tiated using a semi-structured guide with broad questionsinformed by our review of the literature; prepared follow-up questions and probes to elicit additional information;and spontaneous questions responsive to content raisedby participants. In particular, questions related to theGiesbrecht et al. BMC Geriatrics  (2015) 15:91 Page 2 of 10experience of transitioning to wheelchair use (e.g. “Tellme about your experience using a wheelchair/providingassistance?”); developing proficiency with use and the im-pact on function (e.g. “Tell me about how you learned touse your wheelchair/what skills have been most useful”),and barriers to use (e.g. “Tell me about situations or activ-ities that have been most challenging”).For the care providers, the facilitation process wascomparable but the discussion guide focused primarilyon recalling how the transition to wheelchair use hadimpacted their life individually as well as collectivelywith the wheelchair user. Questions related to demandsencountered (e.g. “What has been your experience withtheir use of a wheelchair; do they require your assist-ance”) and the implications for their lived experience(e.g. “Does their (in) ability to operate the wheelchairaffect activities they/you choose to engage in?”). The firstauthor kept field notes related to session content andpersonal interpretations while the RA kept field notes onsession process and participant interaction. All sessionswere audio-recorded and video-recorded to capture non-verbal communication for later review. Audio-recordingswere transcribed verbatim by the facilitating RA and a sec-ond RA verified transcription accuracy against the audiorecordings before removing personal identifiers.Data analysisOur intention was to explore the phenomenon of partic-ipants’ lived experience. Given the absence of any pre-disposing theory due to limited research in this field, weanalyzed the transcripts using a Conventional Contentapproach [22], allowing insights to emerge inductivelyfrom the text. The first author reviewed each transcriptmultiple times to become immersed in the data. Contentfrom the first transcript was parsed into elements cap-turing discrete thoughts or concepts, with codes formu-lated for each. This process was repeated with eachsubsequent transcript, integrating existing and emergentcodes. After completing this initial open coding, the datawas reconstructed and reduced into complementaryaxial codes reflecting broader conceptual issues; docu-mented inclusion parameters were created to delineateconcepts. Using an iterative and reflexive process, datawere then consolidated into overarching themes uniqueto the MWC user and care provider groups. Team mem-bers proposed themes that explicated congruity and con-veyed underlying commonalities between multipleparticipant experiences. The MWC user themes were re-flective of participants’ experience accepting changes intheir mobility and how they adapted accordingly. Careprovider themes revealed the impact of this transitionon their personal and shared experiences. Analyses ofMWC user and care provider groups were conducted inparallel to provide contextual insight, but independentlycoded and themed. The literature suggests that the experi-ences of user and care provider are sufficiently different [9]and our intent was to explore these unique experiences indepth rather than conflate them. Furthermore, the contrast-ing foci (i.e. adapting to wheelchair use versus adapting toliving with a wheelchair user) created complementaryrather than collective insights.The research team communicated regularly and all au-thors reviewed coding; any discrepancies were discusseduntil consensus was reached. An audit trail of the researchand analysis process, including all coding procedures, wasdocumented. To enhance credibility of the data, the firstauthor had extended engagement and communicationwith participants throughout the broader program devel-opment study and engaged them in member checking fol-lowing the focus group analyses. To ensure anonymity,participants’ names were replaced with pseudonyms in thetranscriptions used for analysis and in this report.ParticipantsMWC usersTen individuals agreed to participate; six in Vancouverand four in Winnipeg, with only one female at each site(Table 1). Participants were required to be 55 years ofage or older, live independently in the community, use aMWC as their primary means of mobility for at least1 year and have sufficient cognition and English lan-guage skills to engage in a focus group. Some partici-pants had made their transition to wheelchair use laterin life while others were more experienced, havingacquired their wheelchair in early- to mid-life, and allwere dealing with the effects of aging on wheelchair use.All of these participants, with the exception of Mike andBrent, were active and independent users spending atleast 8 h a day in their wheelchair engaging in both in-door and outdoor activities. Mike and Brent were inde-pendent with indoor mobility in accessible environments,Table 1 Description of wheelchair user focus group participantsPseudonym AgerangeMWCexperienceFormal skillstrainingSiteTim 65–74 50 years Yes VancouverMike 75–84 4 years No VancouverLouise 55–64 48 years No VancouverVern 55–64 39 years Yes VancouverTed 55–64 11 years Yes VancouverRichard 55–64 23 years No VancouverMichelle 55–64 60 years No WinnipegFrank 65–74 25 years No WinnipegBrent 75–84 37 years No WinnipegAllen 75–84 15 years No WinnipegGiesbrecht et al. BMC Geriatrics  (2015) 15:91 Page 3 of 10but required assistance when encountering outdoor orchallenging indoor situations and when propelling longdistances.Care providersParticipants were individuals who provided assistance toor accompanied a MWC user over 55 years of age insideor outside of the home on a regular basis. Two femalesin each city agreed to participate (N = 4). In Winnipeg,Jamie worked as a care provider in a communal livingcomplex that included individuals with a disability(including older adult MWC users) and Felicia providedcare for her husband who was in his 70s and a long-timewheelchair user. In Vancouver, Bertha provided care forher adult daughter and Patricia for her husband.ResultsThe wheelchair user experienceParticipants in the two user groups identified a var-iety of issues that had impacted their transition towheelchair use, which are summarized in three over-arching themes (Fig. 1).Theme 1: on my ownSeven of the ten participants indicated they had receivedlittle preparation for the demands of navigating theirwheelchair in an “ambulatory world”. Three participantsshared similar experiences receiving some degree ofwheelchair mobility skills training (having all attended thesame rehabilitation centre), such as Tim who said: “I camethrough [Rehabilitation Facility] and learned quite a bitfrom the staff but found that getting out at home and thepark and other places, encountered things that I didn’t ex-perience [in Rehab]”. However, most participants reportedlittle or no specific skills training to prepare them for navi-gating barriers in the community, even those who hadreceived formal instruction in hospital. Michelle said shelearned “by trial and error, I don’t remember any formal orinformal contact with any professional”. Frank reflected onhow “I realized I have to do this now because … it’s withblood and tears all the time, you know, we own this … alot of getting used to different things.” Mike highlightedthe frustration of not having access to potential re-sources: “I know there is a lot of training and knowledgeout there but it seems it isn’t handed out, there was nosystem of giving [training]”.Learning to use a wheelchair was perceived as an experi-ential undertaking–in order to learn how to navigate theworld you must explore your environment, as Frank putsit: “Hey, I had to do it [then] because look, somebody’s …not going to be there all the time, so we need to know [howto do it]”. Participants spoke often about the need for ex-posure to new situations so they could master wheelchairmaneuvers and generalize the skills they had acquired tonovel and increasingly challenging environments:“[the most effective way to learn skills is] going outand doing them … the first time I do something Iusually try to take somebody who … can help me getthrough it if I really have difficulty … and then once Iknow that I can cope, then I can do it on my ownforever after”. [Louise]Other experienced wheelchair users, particularly con-temporaries, were a source of some benefit. In particular,the three participants who had received formal trainingduring their rehabilitation stay identified peers withinthe facility that provided some form of instruction andmotivation. Participants recalled that learning sometimestranspired through intentional means. For example, Vernidentified: “peers and mentors that would show you tricksthat they learned over the years having used a wheelchair”.Fig. 1 Overview of themes and subthemesGiesbrecht et al. BMC Geriatrics  (2015) 15:91 Page 4 of 10However, this wasn’t always engendered through a directrelationship and in some cases mentoring was more subtleand detached:“If you see some active people doing things and start tothink about what it is they’re doing differently … becausethey’re not going to explain it to you, it’s something thatyou learn by … seeing them doing it”. [Tim]An interesting conundrum emerged during the partici-pants’ exchange; support from significant others wasidentified as both a help and hindrance to wheelchairmastery. Michelle stated she never really learned wheel-chair independence until she moved out after university:“[At home] if I needed to go up a ramp, somebody wasthere to push me … it wasn’t probably until I was inmy twenties and had my own apartment and thenhad a car that I then started doing things on my own”.Another example of this dichotomy, for those who ac-quired a wheelchair later in life, revolved around havinga partner. Frank related his experience 25 years earlieras a single man learning to adapt to mobility with awheelchair, where practicing was particularly difficultand fraught with risk: “I was quite prone to accidentsbecause I did some things just where I had to learn, andI learned the hard way because when I got out of thehospital, my wife took off so I was on my own”.Theme 2: more than meets the eyeParticipants identified that effective wheelchair useresulted from a multifactorial interplay between the indi-vidual, the activities they pursue, and environmentalvariables. Environmental factors related to accessibility,such as ramps and curb cuts, were essential to have theopportunity to practice mobility skills, as well as thewheelchair device itself. The type of wheelchair obtained,such as a lightweight rigid-frame chair that required lesseffort 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 giveto people and they can’t do anything with them,they’re so heavy and so awful and they can hardlywheel them”. [Allen]Participants further stipulated that proper configur-ation of the wheelchair could enhance performance.Adjustments by the clinician, such as position of the reardrive wheels, could influence ease of propulsion, maneu-verability, and ‘tippiness’. Frank related his experiencereturning to work after acquiring his wheelchair: “I hadso many falls because … I’d go and pick something upfrom the floor and I fell over because the wheels weren’tset properly”.Intrapersonal attributes, such as level of impairmentand strength, were perceived as relevant to the processof adapting to wheelchair use and impacted the kinds ofmobility skills that were reasonable to acquire. Age-related changes further affected performance and requiredcontinual adjustment to wheelchair use:“Complications that came about [from] aging in awheelchair - the shoulders give out, the wrists give out,and so it’s trying to adapt to those things … now Ihave to almost do it a different way again in order tomaintain that level of independence you’d like”. [Ted]Brent noted that some skills acquired earlier in lifewere now used reluctantly or not at all because olderwheelchair users were less physically able and more risk-averse: “I can’t bend over as much as I used to, I can’tjump curbs, going up ramps is a little bit difficult ‘cause Ican’t lean forward as much as I used to, to get mybalance”. Allen articulates his growing concerns abouthigher-risk activities as he gets older:“I’m afraid of a wheelie … even though I’m [anexperienced user] because I’m always thinking ‘am Igoing to get wheeled too far and go right over?’.”The issue of confidence in one’s capacity to learnand perform more advanced wheelchair maneuverswas salient. Louise observed “You get into situationswhere there’s generally a solution but if you haven’thad any experience then you’re hesitant, right?” Self-confidence was linked to internal and external stereo-types of aging. Participants noted that they had theirown preconceptions about lacking the capacity to ac-quire and master advanced skills–these were things thatyoung people did but would be too difficult for olderadults. Allen articulates this position, that “you’ve gotsome people who say ‘I’m in a wheelchair, I’m old, I can’tdo anything, I need somebody else along to push me, Ican’t do it’”.Confidence and persistence in learning to use the wheel-chair were also linked to the psychological and affectivepredisposition of the individual. Participants related thatacceptance of the wheelchair was a primary key to improv-ing mobility, and the loss associated with compromisedambulation was closely tied to investment and motivationin learning mobility skills. Frank recalls this emotionaltransition:“My friends said ‘look at him in a wheelchair’ andlaughed at me, you know? I didn’t realize, my god thisGiesbrecht et al. BMC Geriatrics  (2015) 15:91 Page 5 of 10is a way of life I have to live for the rest of my life … Igot myself started this way, and I eventually started tofeel comfortable in my own skin”.Such notions were borne not solely from self-image,but also broader cultural perceptions of what olderadults are capable of:“Because [we’ve] had all these preconceived notionsabout 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 doingthat’.” [Michelle]Theme 3: interdependenceA third emergent theme was the sense of interdependencebetween those who use a wheelchair and those who don’t.Participants reflected on the importance and necessity ofcollaborating with non-users. Several subtle variants onthis theme came to light: learning to accept and use assist-ance; knowing how to instruct the novice helper; andknowing how to ask for help. As part and parcel of embra-cing the transition to wheelchair use, learning when toseek assistance from others was pertinent. Allen recog-nized situations where the risk of injury was unreasonable,such as icy streets in winter where his wheelchair wasprone to slide during transfers into the car, so he chose tostop a passer-by to aid in stabilizing his chair. Participantsalso identified situations where they might be capable ofindependent mobility but it was simply easier, safer, ormore expeditious to ask for (or accept) assistance. Thiswas perceived as being selective about when and where toexpend effort, rather than inability: “I never refuse some-body who is going to push me up a ramp. Why, if somebodyis there to push me up a ramp, should I be working - Imean, I can do it, but so what?” [Allen]There was overwhelming agreement that it was equallyimportant to learn how to instruct others in providingsafe and effective assistance. Taking control and beingdirective with the helper was identified as critical, par-ticularly 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 doit 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 torequest assistance from others, and advocating courtesywhen assistance is offered, even when it was not requiredor desired. Allen offers this advice:“Wheelchair manners [are important] too - if youdon’t want [help] to do it, thank the person, acceptgracefully and appreciate them … a responsibility tobe courteous as a wheelchair person … because they’llgo offer somebody else”.Furthermore, Michelle speculated that a negativeencounter might have future repercussions:“Invariably there are people out there who have offeredhelp to somebody who is disabled and had their headchewed off for it so the next disabled person they see,they’re very reluctant – they’re just ‘Oh I don’t needthat again, I’m going to walk on by’.”The care provider experienceCare providers also identified a variety of issues andexperiences that accompanied transition to wheelchairuse by the older adults with whom they were closely in-volved, as illustrated through two broad themes (Fig. 1).Theme 1: all encompassingCare providers reflected on how their level of responsibil-ity increased dramatically with the transition to wheelchairuse. The demands that now fell their way were substantial,particularly in how responsibilities felt unrelenting andpervasively entered so many areas of life. Some of theseresponsibilities were foreign to the care providers, butassuming them was the only viable option. Patricia recallsthe demands incurred when her husband transitioned tousing a wheelchair: “It’s all very practical, there’s repairingthe chair – if he gets a flat tire … those little things – theydon’t happen everyday, but when they happen you’re usu-ally the one who’s around”.Most apparent were the physical demands of providingassistance such as assisting the user to transfer in and outof their wheelchair; pushing or maneuvering the wheelchairin difficult or less-accessible situations; or driving to a des-tination and having to dismantle and lift the wheelchair intoa vehicle. Bertha, already into her 80s, spoke about helpingher daughter: “You have to have strength enough to – [help]if they get into difficulties … [she] has tipped out of her chairseveral times over the years and you have to be able to gether back into the chair again.” There was concern aboutthe significant risk with assisting and how this hazard wasexacerbated with aging–their own physical ability toperform tasks and the user’s diminishing capacity:“If they fall out, there’s some problems … as he’s gottenolder – needing help with transfers … I think part of itis the physical strength, but also … figuring out how hecan best help me and then me not having to hurtmyself”. [Patricia]Despite these physical demands, care providers identi-fied greater concern about the other requirementsGiesbrecht et al. BMC Geriatrics  (2015) 15:91 Page 6 of 10placed on them, such as the need to schedule, organizeand manage the MWC user’s life. Even when the userwas capable and largely independent, care providers feltthat ultimately they assumed responsibility for organiz-ing appointments and transportation matters or antici-pating issues that might impact participation in activitiesoutside the home. Patricia spoke about situations whereshops and businesses were inaccessible, such as a step orseries of steps to get into a fast food restaurant. Inaddition to purchasing the food, she also felt compelledto make all the decisions:“You go to a deli – ‘what kind of sandwich would youlike?’ – because he can’t get in the door – so then yougotta remember the type of sandwich … it’s like ‘withfries, without fries’ – you have to kind of guess what[he] would like”.Frequently, negotiation between the care provider’sown social activities and those of the MWC user re-quired compromise. Care providers who were a spouseor parent of the user talked about how these responsi-bilities were ‘part of the package’ of their relationship.However, Felicia also revealed that, at certain times inher life, she wondered about the fairness of hercircumstances:“[For] 5 years … the whole situation depended on meto be there every second for every movement … I don’tthink it was time [commitment], it was more of the‘hey did I sign up for this?’ … We’ve been married for48 years - was that what they meant in the vows?Was I going to do this forever?”Theme 2: even the best laid plansUncertainty and pseudo-accessible environments [23]exacerbated this sense of all-encompassing responsibil-ity; despite scheduling and organizing activities, theseplans were invariably subject to revision and sabotage.Patricia reflects an example:“No matter how much you phone ahead and [ask] ‘arethere any stairs?’ – ‘No problem, you can get in’ – so weget there and there’s two stairs into the front door … it’sjust that feeling of – we even phoned ahead and it’s stilla problem”.Jamie described a situation where several wheelchairusers for whom she provides care were offeredcomplimentary tickets to a theatre show but, uponarrival, were unable to access the ‘accessible’ seating lo-cation. Several participants spoke of having to ‘expectthe unexpected’ and the unpredictability of communityenvironments. In addition to having to make multipledecisions, care providers were also required to makethem ‘on the fly’ in a dynamic and time-sensitivecontext.“[My husband] wheeled over some thorns in a park –‘pop’ – the tire blows up. So then it’s trying to figure outwhere 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 acrowded public location, creating anxiety for bothwheelchair user and care provider. Jamie talked abouthow this meant she was responsible for not only herown anxiety, but also that of the wheelchair user, andthe tremendous social pressure to resolve issues exped-itiously, which then increased the risk of injury fromassisting too quickly or ‘cutting corners’.These complications compelled care providers toprioritize some activities at the expense of others, andthere were invariably missed opportunities for socialengagement. Felicia spoke about their experience duringher husband’s transition to wheelchair use: “We tendedto focus on things you had to do … and learned how notto do a lot of things”. Participants spoke of a narrowingof social circles for both the user and the care provider.Felicia reminisced about her husband’s numerous leis-ure interests and social groups, and how these oppor-tunities began to vanish because meeting locationswere insufficiently accessible. Diminishing opportun-ities for socialization also applied to mutual activitieswhere socially invoked expectations of participating‘as a couple’ precluded an invitation.Even social gatherings with family and friends wereinfluenced by the transition to wheelchair use. Berthaidentified the homes of her children had stairs at thefront door and were not wheelchair accessible. Patricianoted both she and her husband were becoming morerisk-averse and were not willing to have him be ‘carriedup the stairs in his wheelchair’ when visiting family: “wedon’t go there anymore because we’re all getting older -he doesn’t want to fall out of his chair”. As a result, fam-ily gatherings and rituals, such as Thanksgiving dinner,were no longer held in a family member’s home but anaccessible restaurant instead. While they continued toshare these collective events, the dynamic was clearlydifferent and there was a sense of loss that came withcelebrating intimate events in a very public venue.DiscussionDespite the relatively high prevalence of wheelchair useamong individuals with mobility impairment, participantsdescribed the journey of transition as lacking any sort ofroadmap or guidance. Many identified feeling isolated andill-prepared to adapt to changes that necessarily occurredGiesbrecht et al. BMC Geriatrics  (2015) 15:91 Page 7 of 10when the wheelchair became a ubiquitous considerationof daily life. The challenge of learning how to operate thewheelchair in a variety of environments and conqueraccessibility obstacles was daunting and often discouragedefforts to participate in prior activities. The narrowing ofsocial circles and discriminatory conventions of social en-gagement often exacerbated this experience. Some wheel-chair users identified positive experiences during theinitial period of transition, through a supportive commu-nity of therapists, peers and experienced wheelchair userswithin a rehabilitation facility. However, most never hadaccess to such a venue and these disenfranchised wheel-chair users were essentially left to their own devices, learn-ing principally through trial and error.Regardless of whether they received any preparation asnovice users, participants universally agreed learning touse their wheelchair demanded they venture into thecommunity. This could be a very difficult choice, giventhe risks associated and their lack of confidence. How-ever, there was a strong sense that independent mobilitywas a direct consequence of choosing to conquer real-world obstacles. This involved not only learning skills,but also learning to adapt those skills and problem-solvedilemmas that arose because of the varied nature of en-vironments encountered. The concept of generalizingskills through contextual learning is well supported inthe motor learning literature. Studies have demonstratedtraining that incorporates contextual interference [24],or variations in skill and situation, produces betterretention and improved skill performance in novel situa-tions [25]. These findings suggest that a wheelchairtraining program delivered in a community context,such as a home program, has a strong potential forintegration of mobility skills.That the undertaking of community mobility was tiedto personal supports and social resources presentedsomewhat of a conundrum, since these could operate asboth facilitators and barriers to independence. On theone hand, individuals with strong familial supports, likeMichelle, needed to break free in order to acquire thenecessary skills. Conversely, those without a support sys-tem were necessarily ‘thrust into the fire’ and compelledto learn how to manage their wheelchair independentlyat some considerable risk. While the potential for injuryor becoming stranded was high and created considerableanxiety, the impetus to gain mastery and independencecould also be a strong motivator, as in the case of Frank.Participants identified that, rather than any one singlefactor, multiple variables contributed to optimizing wheel-chair use. Attributes of the individual, such as physicalability, self-image and confidence, impacted their capacityto master wheelchair mobility. Recent studies lend supportto the relationship between self-efficacy, wheelchair profi-ciency and community participation [26]. Development ofa wheelchair training program should incorporate prin-ciples of self-efficacy theory to enhance learning andacquisition of mobility skills. Participants noted the en-vironment was equally influential in successful wheel-chair use. Accessibility of the physical environment;support and acceptance in the social environment; andappropriate selection and configuration of the wheel-chair device itself were variables of impact. Finally,participants made influential decisions around engaging(or not) in varying types of activities and occupations,particularly those previously enjoyed. The interplaybetween these factors–the person, their environment(including the wheelchair device), and the activities theychoose to engage in–is synchronous with theoreticalmodels in rehabilitation and research related to mobilityamong older adults [8]. For example, conceptual frame-works in occupational therapy (e.g. Canadian Model ofOccupational Performance) [27] and assistive technologyoutcomes (e.g. Human Activity Assistive Technologymodel) [28] situate functional performance as a conse-quence of the fit between these components. When onecomponent is suboptimal, overall participation can becompromised, despite adequacy in the remaining elements.Participants made a particular link between the needfor support and the social environment. Beyond theirimmediate network of care providers, they inevitablyencountered situations where assistance from strangerswas required. These wheelchair users perceived abroader social relationship, where societal interdepend-ence had a mutually beneficial outcome for both thehelper and the one being helped. This relationship wascultivated during encounters where wheelchair usersasked for or were offered assistance. An intriguingnotion raised was the role of courtesy, extending even tothe point of civic responsibility. Underlying this perspec-tive, these encounters create an experience or memorythat impacted the likelihood the ‘other’ would provideassistance again in the future. A positive perceptionwould leave a lasting impression enticing the helper tooffer assistance to others in the future, essentially ‘payingit forwards’. Conversely, a negative encounter was thoughtto poison the well of future opportunities. In short, theseindividual encounters were thought to reflect positively ornegatively on wheelchair users collectively.Whether this perception is indicative of wheelchairusers generally, or older adult users specifically, or agenerational bias from a time when civic responsibilityand civility was more explicitly engendered, is not clear.However, participants felt it was a step towards enhan-cing reciprocity between the ambulatory and wheeled-mobility worlds; that asking, receiving and providingassistance serve to promote collaboration and could, insome sense, offer a mutually-beneficial experience, asAllen notes: “People are delighted to be able to helpGiesbrecht et al. BMC Geriatrics  (2015) 15:91 Page 8 of 10someone, it makes them feel good, it makes me feel good”.Social exchange theory suggests that the mode ofexchange between individuals can influence future be-haviour, and that rewarded action, such as offering as-sistance, is more likely to be repeated [29]. Inherent insocial exchange theory is the concept of interdepend-ence, where individual human interactions are linked tothe broader social structure and a sense of reciprocityfrom the mutual benefit of these actions [30]. It has beenreported that elders with declining function find it emo-tionally difficult to ask for or receive assistance [31].Those who experience a positive relational exchangewith their helper tend to be more accepting of assistancebecause of the perceived reciprocity in the encounter,even if the benefit to the helper is simple gratitude [32].Despite the belief that wheelchair acquisition reducescaregiver burden, care providers in this study reporteddemands as widespread and overwhelming. The expecta-tions extend beyond simply the physical demands ofpushing and transferring the user, but also assuming theroles and responsibilities the user previously performed,including the mundane. Perhaps more encompassingwere the planning and decision-making responsibilities.Care providers lamented the loss of spontaneity and theeffort required to arrange an outing, whether it was forthem alone, the wheelchair user, or both collectively. Pri-oritizing and choosing activities, particularly which onesto dismiss, could be an onerous task and, for some, chal-lenged their perception of equity in the relationship.There were numerous physical and social barriers thatfurther sabotaged plans, such as encountering a venuethat lacked accessibility as promised. Both care providersand MWC users commented on the issue of inaccessibil-ity, as it had a mutual impact. In such situations, theMWC user invariably relied on their care provider forassistance and there was often a need for a collaborativeresolution. These findings suggest that wheelchair train-ing should ideally involve the MWC user and any careproviders. Providing instruction on multiple approachesor methods to address environmental barriers (i.e. inde-pendent, assisted and collaborative) could alleviate somecare provider demands and increase the repertoire ofstrategies available in novel situations.In light of the experiences reported here, further studyshould be undertaken exploring the extent and scope oftraining provided for older adults transitioning to wheel-chair use, and the impact of such training, or lackthereof, on social participation. In particular, the efficacyof education and training strategies specifically tailoredto older adults should be investigated, such as the use ofpeer-trainers and mentors. While this study presentssome novel and revealing insights in the experience ofolder adult wheelchair users and their care providers,some limitations should be noted. The two study siteswere quite diverse in many respects (e.g. geography,climate, racial diversity and wheelchair accessibility), butexperiences in other cities or rural locations might bequite different. While we did not collect socio-economicdata from the participants, they were typically middle-class and mobile; many wheelchair users are financiallydisadvantaged with limited means of transportation anda more diverse participant group might uncover otherexperiences. Despite substantive recruitment efforts, thenumber of care providers in this study was smaller thandesired and this may have restricted the breadth ofresponses. All of the care providers in this study werefemale and most were a spouse or parent; the experienceof male care providers, children of MWC users, andthose without a direct familial association might be verydifferent. Finally, the participants were a composite of el-ders who had experienced the transition to MWC use andthose experiencing the transition of aging as a MWC user;conflating these experiences might have diluted the inter-pretation and findings of the study. However, obtainingthis breadth of experience and explicating commonalitiesof older adults aging with and transitioning to wheelchairuse was informative, including the need to re-learn manyaspects of wheelchair use as a result of changing capacitywith age. Caution should be exercised in generalizing find-ings to individuals who are substantially dissimilar to theparticipants and their situations as described herein.ConclusionsThe transition from ambulatory to wheelchair mobilitycan feel like uncharted territory for older adults andtheir care providers, as only a select few receive trainingand mentorship. While support is fundamentally import-ant, wheelchair users need to experience real-world en-counters to optimize their independence and proficiencywith wheelchair mobility skills. The impact of this segueinto wheelchair use has a profound impact on care pro-viders, particularly when they are a spouse or familymember. These findings suggest that training is a criticalcomponent in wheelchair provision and informed devel-opment of our program using a community-based ap-proach, integrating self-efficacy principles, and targetingboth user and care provider.AbbreviationsMWC: Manual wheelchair; RA: Research assistant.Competing interestsThe authors declare that they have no competing interests.Authors’ contributionsWCM was responsible for administration of the grant, oversight of the study,and Vancouver site lead. RLW contributed to the qualitative study designand data analysis. EMG was primarily responsible for conducting the datacollection, data analysis, and was the Winnipeg site lead. EMG wrote the firstdraft of the manuscript and all authors reviewed and contributed to the finalversion. All authors read and approved the final manuscript.Giesbrecht et al. BMC Geriatrics  (2015) 15:91 Page 9 of 10AcknowledgementsWe would like to express our appreciation to the study participants fortheir investment and contribution to this project, and to our researchassistants Madeline Hannan-Leith and Laura Churley. This work wassupported by the Canadian Occupational Therapy Foundation and theManitoba Society of Occupational Therapists Research Foundation. EdGiesbrecht is supported by a doctoral fellowship from the CanadianInstitutes of Health Research and Dr. Woodgate is supported by aCanadian Institutes of Health Research Applied Chair in Reproductive,Child and Youth Health Services and Policy Research.Author details1Department of Occupational Therapy, University of Manitoba, R106-771McDermot Avenue, Winnipeg, Manitoba R3E 0T6, Canada. 2Department ofOccupational Science and Occupational Therapy, University of BritishColumbia, T325-2211 Wesbrook Mall, Vancouver, BC V6T 2B5, Canada.3Faculty of Nursing, University of Manitoba, 89 Curry Place, Winnipeg, MBR3T 2N2, Canada.Received: 25 July 2014 Accepted: 16 July 2015References1. Statistics Canada. Participation and activity limitation survey 2006: a profileof assistive technology for people with disabilities. Ottawa: Minister ofIndustry; 2008.2. Mann WC, Llanes C, Justiss MD, Tomita M. Frail older adults’ self-report oftheir most important assistive device. 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