Lifespace and occupational participation following acquired brain injury during driving disruption: a mixed methods study

Abstract

Purpose

To examine the lifespace of participants referred for occupational therapy driving assessment following acquired brain injury, to understand how, why, where and with whom access and participation in community-based occupations is occurring during the period of driving disruption.

Materials and methods

The mixed methods, convergent research design utilised a travel diary and Lifespace Mobility Assessment-Composite quantitative elements and semi-structured interviews analysed qualitatively with an interpretive description lens.

Results

Forty-eight participants (56.25% male) aged between 26 and 65 years, left home on average once/day, primarily to conduct instrumental activities of daily living, health management, and social participation community-based occupations. Most reported restricted lifespace (54.2%) requiring assistance to conduct community occupations (68.1%). Support was primarily provided by family members (80.3%). Analysis of semi-structured interviews (n = 15) created three themes that shaped participant occupational experience during driving disruption: (i) changes to occupational participation; (ii) reliance on others for community access and participation; and (iii) trying to move forward.

Conclusion

The period of driving disruption following the onset of acquired brain injury is a time of occupational disruption which restricts lifespace, changing how, why, where and with whom participation in community-based occupations occurs. Rehabilitation facilitating occupational adaptation process to enhance community access capacity is indicated.

IMPLICATIONS FOR REHABILITATION

• The period of driving disruption following the onset of acquired brain injury is a time of occupational disruption which restricts lifespace and influences participation in community-based occupations.

• Occupational therapists should provide an individualised potential pathway to return to driving with frequent and varied means of reinforcing interim advice to abstain from driving.

• Implementing occupational adaptation can progress community participation goals by establishing community access skills, habits, routines and confidence to foster participation and satisfaction and rebuild occupational identity following acquired brain injury.

Keywords:

• Occupation
• lifespace
• acquired brain injury
• community participation
• driving disruption
• occupational adaptation
• occupational identity

Introduction

Acquired brain injury (ABI) refers to damage to the brain occurring after birth that is unrelated to congenital or degenerative diseases and may result from multiple causalities including stroke, traumatic brain injury (TBI), cerebral infection and hypoxia [1]. Prevailing consequences of ABI for the individual are diverse and may include any singular or combination of change across physical, cognitive, visual, behavioural, and emotional domains [2–5].

The incidence of ABI may be understood by considering stroke which at 12.2 million new diagnoses each year, remains the third leading cause of death and disability world-wide [6]. TBI also poses a significant burden of disease with a global prevalence of 759 per 100 000 people living with this form of brain injury [7]. An exploration of the economic and health consequences of stroke in Australia identified burden was disproportionately apparent among adults aged 18-65 years, largely stemming from unmet needs restricting participation [4].

Changes arising from ABI may influence how the person is able engage in “meaningful occupations”, activities that are significant to or valued by a person providing enjoyment, a sense of purpose, belonging or achievement [8–10]. They range from undertakings within the home including self care and meal preparation to community-based initiatives related to living such as shopping, productivity including work and volunteering, and social pursuits [11,12]. A disability may arise from ABI due to a subsequent limitation in capacity to conduct occupations or a restriction in participation [13].

Occupational participation

Occupational participation is the outcome of interactions between the person, their occupation, such as going to the movies or walking the dog and their environment [14,15]. It incorporates not only involvement in meaningful activity but also reflects satisfaction gained from engagement [16]. Occupational participation has been observed to diminish following ABI [17–19] with the greatest impacts identified for community-based endeavours [12,20]. Consequences of restricted participation following ABI include reduced quality of life, compromised community integration, amplified social isolation, and increased depressive symptoms [17,21–23].

Lifespace

The extent to which a person engages and participates in their community may be explored through the concept of lifespace. This term reflects the geographic domain within which a person lives and conducts their life [24,25]. Lifespace represents an opportunity for participation in out-of-home occupations, describing the frequency and extent to which individuals leave their home and the level of support required to do so [26–29]. As an indicator of community movement, a person’s lifespace has been found to reflect mobility, health, and well-being following stroke [30] and for older persons [31] and describes influences of TBI on family members [27]. By capturing the extent and means by which a person moves about their community following ABI, and in progressing established research priorities for optimising long-term community integration [32], the purpose and nature of activity occurring outside the home can be better understood, barriers and facilitators of participation recognized and interventions designed to enhance and maximise community engagement and participation[33].

Impact of ABI on return to driving

Driving has been established as a community-based occupation that is frequently disrupted following ABI [34–37]. Not only is driving an occupation in its own right, but it is also an “occupation enabler”, providing the means through which engagement in other out-of-home activities can occur [38]. Rates of return to driving following TBI have been reported between 40-85% [37,39–41] and between 7-50% following stroke [42–44] indicating it is a realistic goal for some.

Given the inherent complexity of the driving task and the array of potentially detrimental influences arising from brain injury, the pathway to return to driving may be protracted, resulting in a period of non-driving referred to as driving disruption [34,35,43,45]. This period of driving disruption has been found to influence participation, emotional adjustment, and identity in both TBI and stroke cohorts [23,46]. Whilst transitioning from driver to non-driver has been associated with reduced lifespace in older adults [47], the impact of driving disruption due to ABI on lifespace is unknown beyond its impact on family members [27]. Furthermore, the influence of engaging in an occupational therapy driver assessment (OTDA) following ABI on how a person elects and/or is able to access, engage, and participate in their community following ABI is yet to be explored.

In order to appreciate the impact of the OTDA process on access and participation in community-based occupations, an understanding of the lived experience of individuals following ABI whilst awaiting OTDA is firstly required. This study aimed to examine the lifespace of participants referred for OTDA following ABI, to understand how, why, where and with whom access and participation in community-based occupations is occurring during this period of driving disruption.

Materials and methods

Study design

A mixed methods, convergent research design illustrated in Figure 1, was adopted within a pragmatic epistemological perspective to explore the lifespace after ABI prior to OTDA. This design enabled inferences obtained through varied methods of investigation to be corroborated to increase confidence in findings [48,49].

Figure 1. Research design.

Series of blue boxes displaying flow from quantitative data collection to analysis. Series of green boxes below blue boxes showing qualitative data collection and analysis. Final box illustrates integration of qualitative and quantitative data analysis.

Study setting

The research was undertaken at a tertiary public hospital in Australia providing acute management, inpatient and outpatient rehabilitation, transitional and outreach services for people following ABI. Services included an outpatient occupational therapy driver assessment and rehabilitation service.

Participant selection and eligibility criteria

Adults assessed by their treating medical practitioner as meeting health requirements to explore their return to driving goal following the onset of ABI and referred for OTDA were the target of this study. Inclusion criteria include: (a) aged between 18 years and 65 years inclusive; (b) medically stable (i.e., No significant fluctuations in health status such as seizure activity or inconsistent visual function); (c) holder of a current and valid provisional or open drivers licence; and (d) diagnosis of ABI.

Potential participants were excluded if they were (a) a learner driver; or (b) had a previous neurological condition/incident.

Sampling strategy

A concurrent mixed methods sampling strategy was adopted to explore lifespace prior to OTDA. For quantitative components, all participants recruited to the study had been referred for OTDA following the onset of ABI and represented a homogenous sample. For qualitative elements, purposive random sampling was applied, whereby every third participant engaged in a semi-structured in-depth interview. This pragmatic decision considered and exceeded theoretical saturation estimates indicating samples of 12 among relatively homogeneous populations as often sufficient to achieve data saturation [50]. It also aimed to manage the number of interviews, demonstrate results were not biased by participant selection and derive a cross section of participants across the lifespan of the study to enhance representative credibility [51].

Measures

Demographic and diagnosis-related data

Data extracted from participants electronic medical record are summarised in Table 1. A residential postcode was used to classify the participant’s place of residence as metropolitan or regional [52,53].

Table 1. Demographic, diagnostic and driving-related characteristics.

	Quantitative data set (n = 48)	Qualitative data set (n = 15)
Age, years mean (median, range, SD)	50.2 (52, 26–65, 11.4)	52.7 (52, 42–64, 8.6)
Gender^a n (%)
Male	27 (56.3)	6 (40)
Female	21 (43.8)	9 (60)
Cultural identity
Aboriginal	1 (2.1)	0 (0)
Other	47 (97.9)	15 (100)
Country of birth n (%)
Australia	31 (64.6)	10 (66.7)
England	4 (8.3)	0
New Zealand	2 (4.2)	0
Vietnam	2 (4.2)	1 (6.3)
Ghana	1 (2.1)	0
Malaysia	1 (2.1)	0
Netherlands	1 (2.1)	1 (6.3)
Papua New Guinea	1 (2.1)	1 (6.3)
Republic of South Korea	1 (2.1)	0
Samoa	1 (2.1)	0
South Africa	1 (2.1)	1 (6.3)
Thailand	1 (2.1)	0
United States of America	1 (2.1)	1 (6.3)
Community location n (%)
Urban: Inner metropolitan	23 (47.9)	9 (60)
Outer metropolitan	21 (43.8)	6 (40)
Regional: Inner regional	3 (6.3)	0
Outer regional	1 (2.1)	0
Diagnosis n (%)
Stroke	22 (45.8)	5 (33.3)
Aneurysm	12 (25.0)	5 (33.3)
Traumatic brain injury	7 (14.5)	3 (20.0)
Brain infection	3 (6.3)	1 (6.7)
Tumour	2 (4.2)	0
Carbon monoxide poisoning	1 (2.1)	0
Hypoxic brain injury	1 (2.1)	1 (6.7)
Severity on admission n (%)
Stroke: NHISS
Mild (1–4)	8 (36.4)	3 (60)
Mild to moderately severe (5–14)	9 (40.9)	2 (40)
Missing data	3 (25.0)	0
Aneurysm: WFNS
Grade 1	5 (41.7)	1 (20)
Grade 2	3 (25.0)	2 (40)
Grade 3	0	0
Grade 4	1 (8.3)	0
Missing data	3 (25.0)	2 (40)
PTA, days mean (range)	9.5 (3–27)	3.7 (3–5)
Mild (<24 h)	0 (0)	0
Moderate (1–7 d)	3 (42.9)	3 (100)
Severe (1–4 weeks)	2 (28.6)	0
Missing data	2 (28.6)	0
Time since onset, days mean (median, range, IQ range)	666 (390, 34–7566, 162–715)	474 (380, 34–1674, 168–604)
Highest level of education n (%)
Did not complete school	17 (35.4)	4 (26.7)
Completed high school	11 (22.9)	1 (6.7)
TAFE/Technical college	4 (8.3)	1 (6.7)
Degree	13 (27.1)	7 (46.7)
Postgraduate degree	3 (6.3)	2 (13.3)
Occupational group pre-ABI n (%)
Manger	1 (2.1)	0
Professional	14 (29.2)	7 (46.7)
Technicians and Trade	3 (6.3)	1 (6.7)
Community and personal service	4 (8.3)	1 (6.7)
Clerical and administrative	2 (4.2)	1 (6.7)
Sales	2 (4.2)	0
Machinery operators and drivers	7 (14.5)	2 (13.3)
Labourers	9 (18.7)	1 (6.7)
Other – student, volunteer, unemployed, home duties	6 (12.5)	2 (13.3)
Driving experience
Experience, years mean (range)	30.9 (2–46)	33.3 (2–46)
Usual driving locations: n (%)
City	28 (58.3)	11 (73.3)
Suburban	45 (93.8)	15 (100)
Rural	23 (47.9)	6 (40.0)
High speed	47 (97.9)	15 (100)
Unfamiliar	43 (89.6)	14 (93.3)

^a Gender: As defined by participant and extracted from electronic medical record. Options “male”, “female” or “other”.

Quantitative measures

To understand the purpose and extent to which participants entered their community during the period of driving disruption, quantitative data were obtained via two sources. Firstly, a designed-for-purpose travel diary gathered data concerning the frequency, purpose, extent of travel, support requirements, and mode of transport when leaving home (see Supplementary Appendix A).

Secondly, the Lifespace Mobility Assessment- Composite (LSMA-C) was administered to quantify the frequency and level of independence participants accessed the five geographical zones illustrated in Figure 2, over a four week period of time to determine a lifespace score ranging from 0 to 120 [47]. Confirmed as a reliable and valid measure of mobility with older adults [53,54], a higher score indicated a less constricted lifespace with a score of 60 or below indicating an inability to move independently out of the neighbourhood and more limited social participation[31]. Progression through each zone represented an increase in distance travelled from residence. Support was categorised as: (1) personal assistance, (2) equipment only or (3) neither personal assistance or equipment [55–57].

Figure 2. Lifespace zones.

Series of six eccentric circles illustrating lifespace zones. Inner three circles represent movement within the home. Outer three circles represent movement in community increasing in distance from home.

Qualitative data collection

In-depth semi-structured interviews provided context and a deeper understanding of issues impacting participation in occupations conducted outside the home at a time in ABI recovery leading up to a booked OTDA. The interview schedule provided an opportunity for participants to reflect on their pathway, consider their participation in community-based occupations and identify issues they felt were important for health professionals to know (see Supplementary Appendix B).

Procedures

Recruitment

Potential participants were identified by the first author during the OTDA service’s referral triaging process. Following opportunities to explore and clarify the study purpose and participation requirements, eligibility was determined. Participant information and consent documentation were forward by mail and written consent obtained in accordance with the research protocol which received ethical approval from the health service (HREC/2019/QMS/57505) and university (GU Ref No: 2020/115).

Quantitative elements

Participants were posted customised day-per-page travel diary sheets with concise guidelines for completion. Undertaken over a two-week period and completed within one week of a scheduled comprehensive OTDA, participants completed daily entries to enhance the accuracy of information.

Participants brought their completed travel diary to a scheduled appointment with the first author at the study centre on the day of their initial OTDA when the LSMA-C was administered based upon participant self-report [56,58].

Qualitative element

To facilitate epistemological integrity [51], the semi-structured in-depth interviews were conducted by the first author at the same appointment scheduled to collect quantitative data, so that data collection and analysis were conducted through the lens of the researcher with particular focus on information that would be pertinent to the clinical situation [59].

Member checking occurred during interviews to enhance the accuracy of understanding and ensure messages received were as intended by the participant at that point in time. Interviews were audio recorded and transcribed by a professional transcription service. Transcription accuracy was verified by the first author prior to the commencement of data analysis. QSR International NVivo (Release 1.7) was used to manage the coding process for each individual transcript and then to cluster, explore and develop themes in an iterative manner.

Data analysis

Findings from quantitative and qualitative arms were analysed independently and then considered as a whole through a process of triangulation to explore the complexity of lifespace during driving disruption following ABI.

The research team were all occupational therapists. LB is a clinical researcher with extensive experience exploring the capacity to return to driving following ABI. Together with two professorial academic researchers (LG and MM) all authors collaborated to develop the concept, methodological design, preparing the travel diary and interview schedule, and analysing data.

Quantitative analysis

Descriptive statistics were used to understand travel diary and LSMA-C data. “Community trips” were defined as the number of occasions the participant left their home and “trip legs” were components of each trip. For example, when one participant left home to attend a medical appointment followed by a coffee at a café before they returned home, this was recorded as one community trip involving three trips legs (home to the doctor; doctor to coffee; coffee to home).

Qualitative analysis

Analysis of interview transcripts was guided by interpretive description to generate an understanding of complex experiential phenomena with the intention of using knowledge to influence clinical practice [51,59,60]. Data analysis involved (1) comprehension of data through immersion, (2) synthesis and reflection on meaning, (3) conception of relationships and (4) recontextualising data into findings [60].

After transcript accuracy was confirmed, two interviews were coded inductively by each author separately before all authors collaborated to discuss the initial coding process and facilitate shared comprehension of data. The first author then completed the initial coding of all remaining interviews. Transcripts were explored individually and then collectively by all authors to synthesize meaning. Coding progressed from more concrete descriptive codes through increasingly interpretive analysis to define themes and subthemes. All authors met to discuss, create, and explore relationships in an iterative manner. Final conceptualizations of patterns, themes, and constructed truths created after seven rounds of analysis are presented in Table 2.

Table 2. Qualitative themes.

Theme	Sub-theme	Evidence Pseudonym (age at recruitment, time since onset of diagnosis, severity)
There is a gap in my life: Changes to occupational participation	Occupational participation: “There’s a gap in my life where I was occupied”	“Not having the transport to get there. Sometimes you miss out on invites. You suddenly think, ‘Well, friends and family are going, why am I not being invited?’ So, people just assume that because you can’t get there. It takes a little more effort to plan it.” Benjamin (46 years, 5 months post-TBI onset, PTA severity: mild to moderate) “Not being able to drive. That restricts me from visiting my friends… I still find other ways to improve the social contact, but the thing is, it’s not the proper way that I used to do before.  So, even though I can find some ways around to make my plan, I still need is to get back to driving.” Hwa (44 years, 24 months post-aneurysm, severity unknown)
	Who you are as a person: sense of self	“And I am of an age where I'm still relatively useful. And I have been rendered relatively useless, ‘cause I've been looking at veterinary jobs, and they all say licence required.” Susan (62 years, 33 months post-brain infection) “I was always a confident go-getter person. Always independent. Always confident in my ability to make decisions and act for myself. I would do multi-tasking all day every day, whether it’s my job, my responsibility as a husband, as a brother, as a son,… It’s not until it’s [driving] taken away from you that you reassess who you are as a person and how you live your life.” Nicholas (29 years, 47 months post-TBI, PTA severity: mild to moderate)
Reliance on others for community access and participation	Imposed togetherness	“It’s the actual frustration of not having that independence…of driving…having to rely on my wife for certain things…We do operate very differently…My time management is very different to my wife’s too… So, I have to curb my enthusiasm… more so because it’s reliant on her to do the drive.” Andrew (55 years, 34 days post-stroke, NIHSS: mild to moderately severe)  “I've had a lot of help from my parents, which I've mixed emotions about. They’re older, and I feel like that’s put some pressure on them. I would prefer them not to be driving. I feel like I've inadvertently burdened them.” Nadine (52 years, 6 months post-aneurysm, WFNS II)
	Difficulties asking for help	“It impacts the kids which is really hard because I know that they don’t get to do all the stuff that they want to. And I'm forever, having to ask the other parents to take them, and of course they understand and of course it’s all fine but I still feel all that mother guilt.” Kelly (50 years, 5 months post-stroke, NIHSS: mild to moderately severe) “Well, I think what happens is you go from being a provider, and someone where you’re doing equal contributions, to feeling like you’re just taking from another person.” Joseph (42 years, 6 months post-hypoxic brain injury)
	Inefficiency	“I would like to go to Lismore to the uni, and I would like to go to the plant people in the national park, and go and see the Quolls, but we never really got time because we’re always together… So we’re finding it difficult to get involved in the local community because we’re too reliant… just on one driver.”   Susan (62 years, 33 months post-brain infection) “The weekly trip to Bunnings for instance, well it’s an hour walk… I'd be doing the hour walk to get there and to do the half an hour shop, walk for another hour.  It’s massively inefficient.” Joseph (42 years, 6 months post-hypoxic brain injury)
Trying to move forward	Desire for knowledge	"A while back my surgeon called me and they said ‘Are you in the car?’ And I said ‘Yep’; and he said "You’re not driving?’ And he sort of got a bit snappy at me. I'd already started driving, but I didn’t want to do the wrong thing. I was never told not to drive until that day, or if I was told earlier, um, maybe they neglected to think hang on the guy’s had a head injury, he should be told again and again until it sinks in. I would have liked to have had something on paper that I could stick on my whiteboard. Do not drive until…" Stephen, 59 years, 32 months post-TBI, PTA duration unknown “Seems like there’s a lot of people involved, and it’s all for good reason, but it just lacks clarity as to who to go to, in what order, for what purpose.” Nadine (52 years, 6 months post-aneurysm, WSNS II)
	Finding solutions	“I've organised Anglicare to take me shopping once a fortnight which I found awesome because I don’t have to ask anybody. I know on Monday mornings once a fortnight I'm going to go to the grocery shop. And mum did say at the time, ‘You know I'd do it’, but then I'd have to keep asking and I just feel like it’s so much easier and it’s organised and scheduled.” Kelly (50 years, 5 months post-stroke, NIHSS: mild to moderately severe) “I wanted to get my licence so badly so I could go and buy bread and milk, and it took months to accept, ‘Just walk.’ The doubt in my head said, ‘I can’t make it,’ and the first couple of times it took me far longer than it would normally, but oh well, take your time, have a sit down, don’t buy things that you can’t carry. If it means I gotta go three times a week, five times a week, instead of a negative, maybe it’s a positive, because I'm getting up and about a bit more.” Benjamin (46 years, 5 months post-TBI, PTA severity: mild to moderate)

To enhance the rigor and trustworthiness of the data, research methods incorporated actions to maximise the credibility, transferability, dependability, and confirmability of findings [61]. These included mindlful positionality (occupational therapy discipline), reflective notes, iterative inductive coding, and consensus building amongst all authors to enhance dependability [62]. Confirmability was achieved via the use of direct quotes to illustrate findings [51]. An audit trail was maintained through each iteration of theme development to ensure analytic transparency and a clearly defined interpretation pathway from participant perspectives to final themes and sub-themes. Member checking occurred via regular informal clarification of information during the interview process [61,63]. Post-interview validity checks of defined themes were not conducted with participants as it was felt participant accounts reflected their period of driving disruption at the time of the interview and delayed reflection may involve bias arising from the outcome of OTDA which was conducted within one week of the interview.

Results

Quantitative analysis

The 48 participants recruited to the study (56.3% male) were aged between 26 and 65 years, with an average age of 50.2 years. While the majority of participants were born in Australia (64.6%), an additional 12 countries were represented, reflecting the culturally diverse population serviced by the health service. The most frequent diagnostic groups were stroke (n = 22, 45.8%), aneurysm (n = 12, 25%) and TBI (n = 7, 14.6%). Time since onset of injury ranged between 34 d and 20 years, with a median of 390 d. Current consequences of ABI included cognitive, physical, visual and behavioural components. Table 1 details participant demographic, diagnosis and driving experience-related characteristics.

All participants were open-licence drivers prior to the onset of their ABI who had driven for 2–46 years (mean 30.9 years). Most participants reported driving on a daily basis (72.9%) and within suburban (93.8%), city (58.3%) and rural/country (47.9%) locations prior to the onset of their ABI. Estimated mileage/week ranged from less than 10 km to over 150 km/week.

Travel diary

The 48 participants recorded leaving their residence on 707 occasions over 672 d, and logged 1474 trip legs. The average number of community trips each day was 2.19, ranging between 0 and 12. Most trips legs occurred during daylight hours (86.3%). There were 186 d (27.7%) when participants did not leave home at all with 15 d attributed to covid-19 restrictions (e.g., lockdown). Table 3 illustrates travel diary data.

Table 3. Travel diary findings.

	Quantitative data set (n = 48)	Qualitative data set (n = 15)
Travel frequency n (mean, SD)
Number of days	672	210
Number of time left home/day	707 (1.05, 0.91)	208 (0.99, 0.88)
Total number of trips legs	1475 (2.19, 2.03)	412 (1.96, 1.81)
Purpose of travel OTPF 4th edition n (%)
Instrumental activities of daily living	291 (38.8)	86 (37.9)
Health management	200 (26.7)	69 (30.4)
Social participation	126 (16.8)	50 (22.0)
Work	74 (9.9)	4 (1.8)
Leisure	58 (7.7%)	18 (7.9)
Education	1 (0.1)	0 (0.0)
Activities of daily Living	0 (0)	0 (0.0)
Rest/sleep	0 (0)	0 (0.0)
Play	0 (0)	0 (0.0)
Mode of Transport
Private car	323 (52.2)	102 (55.4)
Walking	184 (29.7)	54 (29.3)
Public transport (bus, train, ferry)	55 (8.9)	11 (6.0)
Ride share (taxi and uber)	39 (6.3)	8 (4.3)
Bicycle	13 (2.1)	9 (4.9)
Alternative transport (council cab, community flyer)	3 (0.5)	0 (0.0)
Plane	2 (0.3)	0 (0.0)
Company present on any trip leg Who was present? n (%)	331 (68.1)	110 (52.1)
Partner	144 (31.9)	65 (44.2)
Dependent child/ren	77 (17.1)	33 (22.4)
Parent	71 (15.7)	11 (7.5)
Friend	40 (8.9)	14 (9.5)
Child who drives	35 (7.8)	16 (10.9)
Relative (sibling, aunt, cousin)	35 (7.8)	10 (6.8)
Support worker	24 (5.3)	7 (4.8)
Professional driver	22 (4.9)	5 (3.4)
Employer	3 (0.7)	0 (0)
Type of support
Driver	276 (61.5)	106 (72.1)
Driver as well as other assistance	52 (11.6)	14 (9.5)
Social only	61 (13.6)	16 (10.9)
Dependent	60 (13.4)	9 (6.1)
Difficult of trip
Very easy	208 (39.5)	38 (25.9)
Easy	202 (38.4)	81 (55.1)
Not difficult or easy	74 (14.1)	35 (23.8)
Difficult	39 (7.4)	3 (2.0)
Very difficult	3 (0.6)	0 (0)
Missing data	14 (2.6)	0 (0)
Identified difficulties n (%)
Weather (too hot, rainy)	16 (15.4)	8 (5.1)
Covid concerns	15 (14.4)	15 (9.6)
Reliance on others	12 (11.8)	5 (3.2)
Inconvenience	12 (11.8)	9 (5.7)
Increased time to complete activity	8 (7.7)	3 (1.9)
Anxiety	7 (6.7)	1 (0.6)
Passenger issues	7 (6.7)	3 (1.9)
Concerns with driver	5 (4.8)	2 (1.2)
Costs	4 (3.8)	0 (0)
Property location	4 (3.8)	4 (2.5)
Baggage	3 (2.9)	1 (0.6)
Car sick	1 (1.0)	0 (0)

Purpose of travel

When applying the Occupational Therapy Performance Framework 4th Edition (OTPF 4th Ed) [34] classification of occupations to purpose of travel, instrumental activities of daily living (38.8%), health management (26.7%) and social participation (16.8%) were most prevalent.

Mode of travel

The majority of trips were conducted in a private car (52.2%), followed by walking (29.7%). A range of public transport, ride-share, community-transport options were also utilised.

Travel companion

Most participants (68.1%) reported having at least one companion on one or more trip legs per day. Partners (31.9%), dependent children (17.1%) and parents (15.7%) were the primary companions. Family supports (parents, children who drive, siblings, and cousins) comprised 80.3% of all companions and formal support workers accounted for 5.3% of assistance. Participants reported that for 61.5% of occasions, the sole reason for the presence of a companion was to act as a driver. While the travel companion was required for both the driver and provision of other supports to enable participation 11.6% of occasions. There were circumstances when companions would have been present irrespective of the participant’s driving status including dependent children (13.4%) and when companionship was for social reasons (13.6%).

Difficulty

Participants self-rated the majority of trips as easy (38.4%) or very easy (39.5%). Of the 22.1% trips rated as not easy, difficult or very difficult, the primary reasons attributed were weather conditions, concerns pertaining to covid-19, psychological impacts of having to rely on others for transport needs, and inconvenience.

LSMA-C

Total LSMA-C scores ranged between 34 and 120 (Mean: 60.8, SD:17.6) with over half of participants scoring below 60 (54.2%). Figure 3 illustrates the frequency of participant movement within the five geographic areas captured by LSMA-C and support requirements.

Figure 3. Lifespace Mobility Assessment- Composite.

Vertical bar graph divided into 6 lifespace zones. In each zone blue bars illustrate the frequency participants access that zone each week and orange bars depict the level of support required to do so.

In relation to movement within and immediately around the residence (i.e., zones 1 and 2), all participants reported leaving their bedroom on a daily basis and 95.9% accessed areas immediately outside their residence (e.g., deck) with the same frequency. Neither personal assistance nor equipment were required to do so by any participants when accessing zones 1 and 2.

A trend towards less frequent access to more distant destinations was observed across the 5 zones, with 18, 4, and one participant/s accessing zones 3, 4, and 5 respectively on a daily basis. Concurrently, an increased reliance on support was required to achieve access to destinations further from home. Whilst 45.8% of participants required support to access zone 3, this increased to 68.8% to access zone 4 and 80.6% to reach zone 5 destinations.

Qualitative analysis

Interpretive description analysis constructed three core themes, each with subthemes, regarding community access and participation following ABI during the period of driving disruption prior to OTDA: There is a gap in my life: Changes to occupational participation; Reliance on others for community access and participation; and Trying to move forward: Need for knowledge and finding solutions to occupation. Created themes and subthemes and illustrative quotes are presented in Table 2. Pseudonyms have been used to maintain participant anonymity.

Theme 1: There’s a gap in my life-changes to occupational participation

Participants reflected on how their non-driver status following the onset of their ABI interfered with their capacity to engage in occupations outside their home and disrupted their sense of self.

Occupational participation

“There’s a gap in my life where I was occupied”. The inability to drive restricted participation across diverse occupational domains, influencing the conduct of instrumental activities of daily living (IADL) including shopping and errands, inhibiting leisure pursuits such as fishing and limiting vocational opportunities including return to work and volunteerism.

Potential for social occupations were compromised not only by the participants’ non-driver status, but also by the assumptions of others regarding the participants’ motivation and/or capacity to overcome transport barriers. Being dependent on support networks and/or alternative transport options and having to plan transport needs ahead of time limited spontaneity and constrained occupational participation. This was amplified by changes to employment status, with post-injury unemployment reducing income and constricting financial capacity to access alternative modes of transport.

Even when solutions were found to compensate for driving disruption, these were not always viewed as adequate. Participants emphasized independent driving cannot always be substituted by another form of transport without detracting from the meaning gained from occupational participation. Sometimes it was a matter of timing, a readiness to explore new pathways that facilitated re-engagement and occupational participation without being dependent on others.

Whilst reflections primarily concerned constricted occupational participation, non-driver status was noted to provide opportunities to explore engagement in new occupations, particularly within the local community where access could be achieved independently.

“I started going to the community farm in the area. I walked to that. Every Wednesday morning.” Margaret (62 years, 16 months post-stroke, NIHSS: mild)

Who you are as a person: a sense of self

The inability to drive and the resultant disrupted access to, and engagement in, community-based occupations, changed how participants perceived themselves. Participants contrasted their pre-ABI sense of self with their current views, reflecting on the consequential changes to their occupational identity.

Participants recognised that their inability to drive, impacted on their occupational preferences and restricted their capacity to meet their own expectations. Participants questioned their purpose when their capacity to contribute was curtailed by their non-driver status. In looking to the future, participants linked an anticipated return to driving with the potential to regain lost occupations and re-claim purpose.

“I want to get back to having my role in the family. I want to get back to doing the work that I’ve done. I want to feel useful to be honest.” Adam (51 years, 2 months post-stroke, NIISH: mild to moderately severe)

Theme 2: reliance on others for community access and participation

Three sub-themes surfaced: Imposed togetherness; Asking for help; and Inefficiencies of completing occupations together.

Imposed togetherness

The onset of ABI and consequent driving restriction increased participant reliance on others for transport. Gratitude for the support offered by others to facilitate participation in valued occupations and to compensate for lost occupations was universal. Underlying this gratitude was recognition of the burden shifted to family members who were required to reorganise their lives to compensate for occupations the non-driving participant was not able to undertake.

“So my wife has had to really step in. It’s been additional pressure on her to slot my appointments in her calendar where I need lifts. My wife’s working full time, she’s picking up the kids, she’s dropping off the kids, she’s doing the shopping, she’s doing everything.”

Adam (51 years, 2 months post-stroke, NIISH: mild to moderately severe)

This new reliance on others was not without challenges. In contrast to pre-ABI habits when doing things together largely involved mutually shared interests, post-ABI co-occupation was often viewed as imposed. Having to do things together resulted in a loss of choice in terms of when or if participation occurred and required frequent negotiation of competing priorities. The possibility of participation being revoked by differences in occupational preferences was experienced. The loss of driving independence and the requirement to invite other parties into pre-existing occupations impacted the capacity to fulfil valued relationships.

Difficulties asking for help

Whilst aware of social support networks able to assist with community access and participation, many participants reported challenges asking for help. Conflicting internal emotions were experienced when weighing up the need for practical assistance with the realisation that such requests required others to go above and beyond previously held expectations.

The ongoing nature of transport support needs during this period of driving disruption meant there was an enduring necessity for negotiation of priorities and competing demands which at times contributed to non-engagement. The perceived imbalance between community access assistance required from others and the value participants placed on their current offerings contributed to difficulties asking for help.

Inefficiency

Whilst completing occupations with support was often viewed as necessary to enable active engagement in community-based occupations, often the sole purpose of the shared engagement was the provision of transport services. Losing the capacity to “divide-and-conquer” necessary occupations (e.g., grocery shopping and vet appointments), required more time be assigned to conduct community-based occupations together, reducing the capacity to engage in other meaningful occupations. Furthermore, efforts to adapt and find new ways to independently complete meaningful occupations were found to be more time consuming and unlikely to be sustained.

Theme 3: trying to move forward

Exploring new ways of engaging in previous occupations or exploring new occupations required participants to develop knowledge of what options were available, confidence in their skills to do so, and support to achieve desired outcomes.

Desire for knowledge

Participants described a desire for knowledge of regulations that govern driving following ABI and how they uniquely apply to their situation in order to adhere and adjust to driving disruption. A disconnect between return to driving requirements and how participants perceived their capacity to drive was evident, particularly when their involvement in other elements of rehabilitation had concluded.

“I didn’t actually realise that I wasn’t able to drive, ‘cause when I got out of the hospital, I felt pretty much able to do what I did before, and then I got told by Dr X, “I’m not going to give you your licence back until you get an assessment” and I thought, ‘Well, why are you discharging me because I’m obviously not better.’” Susan (62 years, 33 months post-brain infection)

The pathway to return to driving is complex and can be convoluted, involving multiple decision makers. Participants identified the need for a clear personalised return to driving pathway prior to discharge to conceptualise the process that lay ahead and assist the development of management strategies.

The need for awareness of and competency accessing alternative transport options to increase capacity to actively navigate community access was advocated.

Finding solutions

The desire to engage and participate in community-based endeavours motivated participants to use a range of strategies to respond to the challenge of their non-driver status during this phase in their ABI recovery. Problem solving and planning were used to lessen the potential for transport issues to be the reason for not engaging and participating in community-based occupations. The capacity to “share the load” was commonly identified as an important strategy to successfully manage the multitude of away-from-home demands. Modifying and dispersing expectations, facilitated the establishment of a broader network of support to achieve participation outcomes.

“I’m lucky to have that additional support of the NDIS, because families, they have lives too so they don’t always want to be the ones to be helping. But they pick up the slack when a support worker can’t make it or they can only work certain shifts.” Kristy (42 years, 13 months post-AVM, severity unknown)

Engaging formal alternative transport options empowered participants to resume the performance of occupations without reliance on others, rekindling a sense of mastery and satisfaction. For some, more tangible solutions were found to atone for the additional demands made on others.

“I bought her a nice new car so that she felt happier and she didn’t mind driving me around.” Stephen (59 years, 32 month post-TBI, PTA: unknown)

Effective solutions required a willingness to adapt prior routines and environmental context by participants and their networks in order for engagement, occupational participation and connection to occur. The process of adaptation was not easy and often reflected a complex adjustment process where self-doubt about the capacity to meet competency expectations influenced options. Environmental factors such as weather conditions or a lack of public transport and pragmatic concerns including difficulties carrying home shopping limited the feasibility of potential solutions.

“Things like picking up the kids from school, I’ve been doing by walking. But when it’s raining or it’s hot or there are other things that you need to do rather than just a direct pick up of the children, it becomes difficult.”

Joseph (42 years, 6 months post-hypoxic brain injury)

Whilst new routines were forged to create opportunities for social connectivity and the performance of occupations that were not reliant on others, for some, the onset of ABI and restricted driving continued to be overwhelming and limited capacity to consider alternatives. Protective mechanisms influenced decisions to avoid potential failure.

“And I’ve found that I’d rather withdraw from things, rather than disappoint people, because then when it doesn’t happen, you feel like you’re taking more steps back.” Stephen (59 years, 32 month post-TBI, PTA: unknown)

Integrative analysis

Table 4 illustrates the integration of qualitative and quantitative data set results concerning community access and participation following ABI during the period of driving disruption prior to OTDA.

Table 4. Integration of quantitative and qualitative data.

Theme	LSMA-C	Travel diary	Interview
WHERE: Community access	Access to community beyond place of residence (ie Level 3): 100% at least once/week	Average number of times participant left home/day: 1.05	“I walk across to Coles every morning. It’s either go to the supermarket, go to the chemist if I need to go or go to the newsagency.” Donna (43 years, 16 months post-aneurysm, WFNS:II) “The council cabs are really good to access a larger shopping centre…not reliant on family to take me.” Margaret (62 years, 16 months post-stroke, NIHSS: mild)
WHY: occupational Participation	Access to community at least once/week: Beyond neighbourhood (Level 4): 93.8% Beyond town (Level 5): 39.6%	Purpose of travel: IADL (38.8%) Health management (26.7%) Social participation (16.8%) Work/Education (10%) Leisure (7.7%)	“How many people just jump in their car and go down to the shop for a loaf of bread and milk? I can’t do that. I've gotta get my daughter. Sometimes she might say, ‘Dad, I'm busy,'. Taxis are too dear. You might be sitting at a bus stop for an hour before it comes.” Gary (63 years, 5 months post-stroke, NIHSS: mild to moderately severe) “I’ve got friends I play cards with every three weeks. They’ll come and pick me up or we swap houses so they’ll come to me.” Lynette (64 years, 7months post TBI, PTA: mild to moderately severe) “I would phone my sister and we’d take the two girls to Mt Coot-tha or the botanical gardens for the day. Now I have to phone them and say could you come and pick us up and it’s hard to keep asking.” Kelly (50 years, 5 months post-stroke, NIHSS: mild to moderately severe)
WITH WHOM: Reliance on others for community access and participation	Support required to access Level 3: 45.8% Support required to access Level 4: 68.8% Support required to access Level 5: 79.2%	Level of reliance: At least one companion on one or more trip legs/day (68.1%) Purpose of support: Driver only (61.5%) Driver and other assistance (11.6%) Support provider: Family (80.3%) Friends (8.9%) Support worker (5.3%)	“So it’s learning to appreciate that someone does work differently to you and can’t do everything… because it’s reliant on her (my wife) to do the driving.” Andrew (55 years, 34 days post-stroke, NIHSS: mild to moderately severe)  “Saturday sport can be a bit tricky because three children in three different sports. So my husband often takes one child, I’ll take one with a support worker and my sister will take another ‘cause our daughters are in the same team.” Kristy (42 years, 13 months post-AVM, severity unknown) Susan: “I used to always do all of the shopping on my own, because you didn’t like shopping. Whilst I was in hospital he had to do all of the shopping.” Partner: “I’m still doing the shopping because you cant do it by yourself.” Susan: “And I could do that by myself.” Partner: “Yes you could.” Susan: “But I cant drive.” Partner: “Yes you could… there’s a lot of stuff you could do by yourself.” Susan (62 years, 33 months post-brain infection)
HOW: Trying to move forward		Mode of transport: Private car (52.2%) Walking (29.7%) Public transport (9.2%) Ride share (6.3%)	“I’ve been trying to be getting out under my own steam independently. I’ve been trying use the restrictions as an opportunity to exercise and do other things.” Joseph (42 years, 6 months post-hypoxic brain injury) “I am sharing the load because I was conscious that I was burdening my parents or asking my husband. So if there’s a bus or if I’m willing to spend money on an Uber to get me around I will.” Nadine (52 years, 6 months post-aneurysm, WFNS II)

Triangulation of all three data sources confirmed lifespace was restricted while people with ABI were unable to drive and awaiting OTDA. Quantified by LSMA-C, the restricted lifespace illustrated by travel diary data was elaborated during in-depth interviews.

The significant requirement for personal support to access and participate in community-based occupations was corroborated by all three data elements. Travel diary (68.1%) and LSMA-C (65.2%) data confirm the need for support to access and enable participation in community occupations. Interviews revealed not only participant awareness of their need for support but how this reliance on support weighed on decision making when determining participation goals.

Discussion

This study explored the lifespace of participants referred for OTDA following ABI. Our findings revealed the period of driving disruption whilst awaiting OTDA post-ABI is a time of restricted lifespace, with changes to how, when, where and with whom, participants accessed and participated in community-based occupations.

The conduct of IADL, health management and social participation occupations most frequently motivated the “why” of community-based participation, influencing the “where” of community access. In contrast to LSMA-C normative population data, participants in this study exhibited a more restricted lifespace, confirming previous findings that community-based participation diminishes post onset of ABI [17,19,64].

Changes went beyond interference with the independent driving capacity to include the broader concept of occupational disruption: a temporary disturbance to the usual pattern of occupational performance and engagement arising, in this instance, from the onset of ABI [65]. Consistent with previously identified impacts, non-driver status post-ABI disturbed participation in community-based occupations, influenced occupational identity, and challenged participants, and their support networks, to adapt routines in order to achieve occupational participation post-ABI [66]. This conformity with findings concerning community participation post-ABI in general, may accentuate difficulties separating participant perceptions about how they access and engage in away-from-home occupations due to their ABI itself, due to their non-driver status or more likely, the interconnectedness of these influences. An individual’s response to changes in their person-occupation-environment configuration in order to enable engagement in occupations with relative competency illustrates the life-long normative process of occupational adaptation [67–70]. The application of this internal process of striving for and achieving mastery with engagement in meaningful occupations has been described following stroke [71] and TBI [72]. This exploration of lifespace supports previous findings that driving disruption following the onset of ABI marks a time of occupational transition that demands occupational adaptation in order to engage and participate in community-based occupations [36,72,73].

In this study, the occupational challenge was exemplified by the change in “how” community access occurred during the period of driving disruption. As previously independent drivers, current non-driver status required participants to alter former travel habits. Motivated by their desire to engage in occupations outside their home, participants adjusted pre-existing habits (e.g., independent driving) and established new routines (e.g., use of community transport services, lifts from family) to adapt to circumstances. These findings corroborate the established inter-relatedness between motivation, routines and environmental influences on occupational participation [74,75].

Participants illustrated progressive transitions as they worked towards relative mastery and satisfaction concerning their participation in community-based occupations. For example, whilst initially accepting of passive transport options (e.g., being driven by family to attend the hairdressers), many participants described progressively shifting their goal posts to develop competency and mastery of independent community access (e.g., using public transport to travel to the hairdresser). Yet the process was not complete, with all participants working towards their imagined future of returning to independent driving via engagement in an OTDA. Findings confirm the occupational adaptation process as dynamic, responsive to the sudden onset of ABI, and life-long and re-enforce the influence of occupational satisfaction in motivating occupational participation [16,21,74,75].

At times, participants connected their diminished engagement in community-based occupations with negative shifts in their sense of occupational identity. The loss of opportunity and/or capacity to participate in occupations of choice and perceived changes to how others treated them illustrate previous findings concerning occupational identity disruption following ABI [69,76,77]. Participant perceptions of being “relatively useless” due to their non-driving status, their restricted lifespace as measured by LSMA-C, and their consequent need to adapt and rebuild their occupational identity, reinforce prior research associating non-driving status with disability following ABI [21,23]. Yet despite challenges, some participants found ways to rebuild their participation in community-based occupations during driving disruption. Participants reported developing self-efficacy and confidence in both utilising alternative options to access the community and participating in previous and/or new community occupations, positively influencing occupational identity following ABI [69].

In considering the “with whom” element of community-based occupational participation, the requirement for companionship for most outings illustrated in the travel diary and LSMA-C data in this study, supports the previously established positive influence of social support on participation following ABI. [78,79]. The primary burden for this support continues to lie with family members. Two of the four typologies identified by Liang et al. [27] in defining changes to the lifespace of family members following TBI, “Trying to fit it all in” and “We spend all our time together now” were represented in the participants’ perspectives of lifespace explored in this study. Within the theme “reliance on others for community access and participation”, participants were cognisant of implications arising from imposed togetherness on both their own and their family member’s capacity to engage, prioritise, and participate in occupations. The enforced togetherness associated with non-driving status, diminished capacity to engage in both valued co-occupation such as previously shared leisure interests (e.g., kayaking together) as well as independent occupational choices, for both participants and their family members, representing a change to life space [27].

The importance of providing accurate knowledge concerning driving restrictions post-ABI prior to discharge has been established [45]. This study confirms education regarding driving restrictions may not be routinely provided in a manner that resonates with people post-ABI [23,80]. To facilitate adaptation during driving disruption, participants continue to seek greater clarity about their unique pathway to return to driving with increased frequency and varied means of reinforcing interim advice to abstain from driving. Evidence is emerging in relation to practical resources to facilitate appropriate timing of return to driving [81] as well as compensatory strategies to manage transport needs during driving disruption and/or driving cessation [25] thereby increasing occupational participation.

Limitations

This study did not consider why participants did not leave their home during the period of study beyond covid-19 causalities. By exploring why participants stay at home, rather than exclusively focusing on achieved participation levels, future studies may enhance awareness of barriers to participation in out-of-home occupations (e.g., stayed at home because unable to secure a lift vs satisfied by home-based occupations).

There was a notable variation to the length of time since onset, potentially reflecting differences with injury severity, time for adjustment, and engagement in the occupational adaptation process. This may influence the time participants have had in coming to terms with their ABI and driving disruption and reflect opportunities for exploration of alternative transport options to enable community-based occupational participation. However, the period of investigation reflected a common point in recovery: a time when their doctor felt they were first ready to participate in an OTDA to determine their current capacity to return to driving.

The sampling method adopted for the qualitative element of this exploratory study resulted in an over-representation of more highly educated participants. It would be interesting to further understand the lived experience of participants without tertiary education in future studies to better appreciate experiences from this perspective. A further limitation to this study is that whilst the LSMA-C tool used to quantify lifespace has been confirmed as a valid and reliable measure of lifespace for older adults, this is yet to be ascertained for adults with ABI.

This exploratory study has identified a range of considerations for clinicians to enhance participation in community-based occupations following ABI during the period of driving disruption. This includes preparing consumers and their support networks for the likely increase in reliance on support networks to manage transport needs, the consequent increase in togetherness to undertake community-based occupations, and the requirement for consumers and their support networks to continually adapt prior routines in order for engagement and participation in community-based occupations to occur. Strategies to plan time for shared interests beyond essential tasks and looking for transport solutions that remove some aspects of repetitive asking for help (e.g., setting up community supports to complete weekly shopping rather than the person having to ask for a lift to shopping) may alleviate some challenges.

Recommendations for future research include exploring changes to lifespace following the conduct of OTDA to understand if the process, outcomes and changes in driver-status influence lifespace. Exploring the effectiveness of strategies to facilitate mastery and progression of community participation skills that reduce reliance on support network and enhance capacity to access destinations further away from home using the process of occupational adaptation is indicated. Finally, understanding the influence of consumers being provided with an individualise pathway to explore a potential return to driving prior to discharge from the hospital on their approach to managing transport and community access needs during driving disruption and lifespace may further advance clinical practice.

Conclusion

Community-based occupational participation changes across a person’s lifespan reflecting the dynamic influence and inter-play of person, occupation, and environment elements. This is evident following ABI during a period of driving disruption when an inability to drive restricts lifespace, changes participant access and participation in community-based occupations, increases reliance on support networks, and results in changes to occupational identity.

Clinical trials register

This trial is registered with Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12620000057987 https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12620000057987

Acknowledgements

Our gratitude is extended to participants in this study for sharing their experiences.

We acknowledge the support of the Princess Alexandra Hospital Occupational Therapy Department in enabling the implementation of this research initiative.

We recognise and greatly appreciate The Hopkins Centre: Research for Rehabilitation and Resilience and Metro South Health Research for supporting the progression of this study.

Disclosure statement

The authors report there are no competing interests to declare.

Data availability statement

The data that supports the findings of this study are available on request from the corresponding author, LB. The data are not publicly available as information could compromise the privacy of research participants.

Additional information

Funding

This work was supported by Metro South Health Research Support Scheme: 2021 Early Career Researcher Grant to the study “Community access and participation following acquired brain injury: A mixed methods evaluation of the driving assessment process including outcomes, life space, and the efficacy of on-road driving remediation”. This research project was funded by The Hopkins Centre – a joint initiative of Department of Rehabilitation, Metro South Health and Griffith University. The Motor Accident Insurance Commission provided funding to The Hopkins Centre to support and conduct research activities that aim to improve the treatment and rehabilitation of people injured in motor vehicle crashes.