Navigating uncharted territory: a qualitative study of the experience of transitioning to wheelchair use among older adults and their care providers

The wheelchair is becoming an increasingly common assistive device for older adults. With age, the risk of a disabling health condition increases and mobility is the most prevalent area of impairment among older adults in Canada [1]. A 2004 study reported that among multiple assistive device users, the manual wheelchair (MWC) was considered third most important, following eyeglasses and canes [2]. In fact, the wheelchair icon has become synonymous with accessibility. The number of wheelchairs provided to address mobility issues among older adults is rising. In 2001, an estimated 81,000 Canadians 65 years and older required a wheelchair for mobility [3]. The introduction of an assistive device is intended to improve mobility, function and quality of life as well as reduce the need for personal assistance and diminish burden for care providers [4]. However, the acquisition of a wheelchair does not necessarily mean the user will become independently mobile or improve performance of functional activities. In both Canada and the United States, over 90 % of older adult MWC users experience performance restrictions in at least one major life activity [1] compared with only 15 % for those who don’t use a mobility device [5]. To accomplish these activities, assistance must often be engaged from a family member or other care provider [6]. In Canada, nearly six in ten older adult wheelchair users require assistance from a care provider for basic mobility [3]. Compromised participation and social connectedness have been implicated with restrictions in mobility [7], often manifesting in experiences of isolation, stress and low self-esteem diminishing quality of life [8]. These challenges to independent mobility affect not only wheelchair users, but their families as well. A 2006 study of stroke survivors adjusting to wheelchair use identified substantial restriction in care providers’ social roles and an increased burden of care [9]. One quarter of all care providers for the elderly in Canada are themselves over 65 [10] and at increased risk for injury while assisting these wheelchair users.

Acquisition of a wheelchair, or any assistive device for that matter, is a complex and multi-step process, including comprehensive assessment, prescription, procurement, configuration, proper fitting, adequate training and follow-up [11]. Mortenson and Miller [12] have explored user and prescriber experiences of the wheelchair procurement process, and identified how physical, environmental and resource constraints often compromise the ability to secure optimal equipment and achieve desired goals. Beyond procurement, learning to effectively operate and maneuver the wheelchair in a variety of contexts is a critical factor. In fact, older adults’ acceptance of assistive devices, such as a wheelchair, depends greatly on the adequacy of training provided, particularly during initial acquisition [13]. While the evidence indicates structured training improves wheelchair mobility and operational skill, older adults typically receive little or no skills training. A recent survey of 68 Canadian rehabilitation centres reported only two-thirds offered basic skills training (e.g. propulsion), typically for 1–4 h, and advanced skills training (e.g. wheelies) was provided in less than 12 % of facilities [14]. This lack of training not only diminishes the user’s capacity to participate in meaningful activities, but also place them at greater risk for injury. The estimated annual incidence of tips and falls among Canadian wheelchair users is 5.2 %, with roughly 80 % incurring an injury and half resulting in an Emergency department visit [15]. Recent studies in the United States estimate the cost to treat such an injury is $25,000–75,000 and there is on average one fatality per week due to wheelchair-related accidents [16].

Despite the documented rise in use, little is known about the user experience of transitioning from ambulatory to wheelchair mobility, particularly among older adults; supporting such mobility transitions has been an identified need [8]. Furthermore, the interplay between the wheelchair user and their care provider (who is often a spouse or family member) during this process is poorly understood. To inform the development of a novel wheelchair skills training program specifically for older adults [17], we pursued a clearer understanding of the lived experience of this transition to wheelchair use, particularly the challenges and facilitators encountered by participants. Our research question examines “what is the process and impact of adjusting to wheelchair use for both older adult users and their care providers?”

As part of a larger training program development study [18] employing a Participatory Action Design approach [19], six focus groups were conducted across two large metropolitan centres in Canada (Winnipeg and Vancouver). We used focus groups as a qualitative research strategy because the experience of transitioning to wheelchair use is a relatively unexplored phenomenon and difficult to ascertain through quantitative means. A focus group format provided an organic means to elicit participants’ experiences and uncover underlying contributing factors, rather than seeking confirmation for a priori assumptions. Rather than individual interviews, focus groups were intentionally used to promote exchange and dialogue, drawing out less vocal participants, and fostering both common and diverse experiences. Participants were recruited through public advertisement and direct invitation via consumer advocacy agencies, rehabilitation hospitals, and research lab databases. A total of four focus groups were undertaken with older experienced MWC users (n = 10), consisting of two sessions, conducted 3 months apart in each city. In Vancouver there were six participants and in Winnipeg there were four. Two focus groups (n = 4) were also conducted with care providers (i.e. a spouse, family member, or paid caregiver of an older MWC user), one in each city. We had targeted 3–6 participants for each group to ensure a balance between breadth of experience and opportunity for participant engagement, and to be able to pragmatically gather on multiple occasions [20]. Recruitment of care providers proved to be considerably more challenging due to limited avenues of access, poor response to advertisement, and the fact that many older MWC users did not have an interested care provider. Written informed consent was obtained from all participants prior to conducting the focus groups and study approval was obtained from the Research Ethics Boards at the University of Manitoba (#H2011:357) and the University of British Columbia (#H11-02558).

One of the authors (EMG), with previous facilitation experience and expertise in the content area [21], facilitated all focus groups together with a Research Assistant (RA). Each focus group was approximately 2 h in length and included an introduction identifying the purpose of the study, agenda for the session process, and procedures for analyzing and sharing data. Discussion was initiated using a semi-structured guide with broad questions informed by our review of the literature; prepared follow-up questions and probes to elicit additional information; and spontaneous questions responsive to content raised by participants. In particular, questions related to the experience of transitioning to wheelchair use (e.g. “Tell me about your experience using a wheelchair/providing assistance?”); developing proficiency with use and the impact on function (e.g. “Tell me about how you learned to use your wheelchair/what skills have been most useful”), and barriers to use (e.g. “Tell me about situations or activities that have been most challenging”).

For the care providers, the facilitation process was comparable but the discussion guide focused primarily on recalling how the transition to wheelchair use had impacted their life individually as well as collectively with the wheelchair user. Questions related to demands encountered (e.g. “What has been your experience with their use of a wheelchair; do they require your assistance”) and the implications for their lived experience (e.g. “Does their (in) ability to operate the wheelchair affect activities they/you choose to engage in?”). The first author kept field notes related to session content and personal interpretations while the RA kept field notes on session process and participant interaction. All sessions were audio-recorded and video-recorded to capture non-verbal communication for later review. Audio-recordings were transcribed verbatim by the facilitating RA and a second RA verified transcription accuracy against the audio recordings before removing personal identifiers.

Despite the relatively high prevalence of wheelchair use among individuals with mobility impairment, participants described the journey of transition as lacking any sort of roadmap or guidance. Many identified feeling isolated and ill-prepared to adapt to changes that necessarily occurred when the wheelchair became a ubiquitous consideration of daily life. The challenge of learning how to operate the wheelchair in a variety of environments and conquer accessibility obstacles was daunting and often discouraged efforts to participate in prior activities. The narrowing of social circles and discriminatory conventions of social engagement often exacerbated this experience. Some wheelchair users identified positive experiences during the initial period of transition, through a supportive community of therapists, peers and experienced wheelchair users within a rehabilitation facility. However, most never had access to such a venue and these disenfranchised wheelchair users were essentially left to their own devices, learning principally through trial and error.

Regardless of whether they received any preparation as novice users, participants universally agreed learning to use their wheelchair demanded they venture into the community. This could be a very difficult choice, given the risks associated and their lack of confidence. However, there was a strong sense that independent mobility was 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-solve dilemmas that arose because of the varied nature of environments encountered. The concept of generalizing skills through contextual learning is well supported in the motor learning literature. Studies have demonstrated training that incorporates contextual interference [24], or variations in skill and situation, produces better retention and improved skill performance in novel situations [25]. These findings suggest that a wheelchair training program delivered in a community context, such as a home program, has a strong potential for integration of mobility skills.

That the undertaking of community mobility was tied to personal supports and social resources presented somewhat of a conundrum, since these could operate as both facilitators and barriers to independence. On the one hand, individuals with strong familial supports, like Michelle, needed to break free in order to acquire the necessary skills. Conversely, those without a support system were necessarily ‘thrust into the fire’ and compelled to learn how to manage their wheelchair independently at some considerable risk. While the potential for injury or becoming stranded was high and created considerable anxiety, the impetus to gain mastery and independence could also be a strong motivator, as in the case of Frank.

Participants identified that, rather than any one single factor, multiple variables contributed to optimizing wheelchair use. Attributes of the individual, such as physical ability, self-image and confidence, impacted their capacity to master wheelchair mobility. Recent studies lend support to the relationship between self-efficacy, wheelchair proficiency and community participation [26]. Development of a wheelchair training program should incorporate principles of self-efficacy theory to enhance learning and acquisition of mobility skills. Participants noted the environment was equally influential in successful wheelchair use. Accessibility of the physical environment; support and acceptance in the social environment; and appropriate selection and configuration of the wheelchair 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 interplay between these factors–the person, their environment (including the wheelchair device), and the activities they choose to engage in–is synchronous with theoretical models in rehabilitation and research related to mobility among older adults [8]. For example, conceptual frameworks in occupational therapy (e.g. Canadian Model of Occupational Performance) [27] and assistive technology outcomes (e.g. Human Activity Assistive Technology model) [28] situate functional performance as a consequence of the fit between these components. When one component is suboptimal, overall participation can be compromised, despite adequacy in the remaining elements.

Participants made a particular link between the need for support and the social environment. Beyond their immediate network of care providers, they inevitably encountered situations where assistance from strangers was required. These wheelchair users perceived a broader social relationship, where societal interdependence had a mutually beneficial outcome for both the helper and the one being helped. This relationship was cultivated during encounters where wheelchair users asked for or were offered assistance. An intriguing notion raised was the role of courtesy, extending even to the point of civic responsibility. Underlying this perspective, these encounters create an experience or memory that impacted the likelihood the ‘other’ would provide assistance again in the future. A positive perception would leave a lasting impression enticing the helper to offer assistance to others in the future, essentially ‘paying it forwards’. Conversely, a negative encounter was thought to poison the well of future opportunities. In short, these individual encounters were thought to reflect positively or negatively on wheelchair users collectively.

Whether this perception is indicative of wheelchair users generally, or older adult users specifically, or a generational bias from a time when civic responsibility and civility was more explicitly engendered, is not clear. However, participants felt it was a step towards enhancing reciprocity between the ambulatory and wheeled-mobility worlds; that asking, receiving and providing assistance serve to promote collaboration and could, in some sense, offer a mutually-beneficial experience, as Allen notes: “People are delighted to be able to help someone, it makes them feel good, it makes me feel good”. Social exchange theory suggests that the mode of exchange between individuals can influence future behaviour, and that rewarded action, such as offering assistance, is more likely to be repeated [29]. Inherent in social exchange theory is the concept of interdependence, where individual human interactions are linked to the broader social structure and a sense of reciprocity from the mutual benefit of these actions [30]. It has been reported that elders with declining function find it emotionally difficult to ask for or receive assistance [31]. Those who experience a positive relational exchange with their helper tend to be more accepting of assistance because of the perceived reciprocity in the encounter, even if the benefit to the helper is simple gratitude [32].

Despite the belief that wheelchair acquisition reduces caregiver burden, care providers in this study reported demands as widespread and overwhelming. The expectations extend beyond simply the physical demands of pushing and transferring the user, but also assuming the roles and responsibilities the user previously performed, including the mundane. Perhaps more encompassing were the planning and decision-making responsibilities. Care providers lamented the loss of spontaneity and the effort required to arrange an outing, whether it was for them alone, the wheelchair user, or both collectively. Prioritizing and choosing activities, particularly which ones to dismiss, could be an onerous task and, for some, challenged their perception of equity in the relationship. There were numerous physical and social barriers that further sabotaged plans, such as encountering a venue that lacked accessibility as promised. Both care providers and MWC users commented on the issue of inaccessibility, as it had a mutual impact. In such situations, the MWC user invariably relied on their care provider for assistance and there was often a need for a collaborative resolution. These findings suggest that wheelchair training should ideally involve the MWC user and any care providers. Providing instruction on multiple approaches or methods to address environmental barriers (i.e. independent, assisted and collaborative) could alleviate some care provider demands and increase the repertoire of strategies available in novel situations.

In light of the experiences reported here, further study should be undertaken exploring the extent and scope of training provided for older adults transitioning to wheelchair use, and the impact of such training, or lack thereof, on social participation. In particular, the efficacy of education and training strategies specifically tailored to older adults should be investigated, such as the use of peer-trainers and mentors. While this study presents some novel and revealing insights in the experience of older adult wheelchair users and their care providers, some limitations should be noted. The two study sites were quite diverse in many respects (e.g. geography, climate, racial diversity and wheelchair accessibility), but experiences in other cities or rural locations might be quite different. While we did not collect socio-economic data from the participants, they were typically middle-class and mobile; many wheelchair users are financially disadvantaged with limited means of transportation and a more diverse participant group might uncover other experiences. Despite substantive recruitment efforts, the number of care providers in this study was smaller than desired and this may have restricted the breadth of responses. All of the care providers in this study were female and most were a spouse or parent; the experience of male care providers, children of MWC users, and those without a direct familial association might be very different. Finally, the participants were a composite of elders who had experienced the transition to MWC use and those experiencing the transition of aging as a MWC user; conflating these experiences might have diluted the interpretation and findings of the study. However, obtaining this breadth of experience and explicating commonalities of older adults aging with and transitioning to wheelchair use was informative, including the need to re-learn many aspects of wheelchair use as a result of changing capacity with age. Caution should be exercised in generalizing findings to individuals who are substantially dissimilar to the participants and their situations as described herein.

The transition from ambulatory to wheelchair mobility can feel like uncharted territory for older adults and their care providers, as only a select few receive training and mentorship. While support is fundamentally important, wheelchair users need to experience real-world encounters to optimize their independence and proficiency with wheelchair mobility skills. The impact of this segue into wheelchair use has a profound impact on care providers, particularly when they are a spouse or family member. These findings suggest that training is a critical component in wheelchair provision and informed development of our program using a community-based approach, integrating self-efficacy principles, and targeting both user and care provider.