Abstract
Return to previously valued occupations is a common goal of individuals following acquired brain injury (ABI). However, the focus of rehabilitation is often on self-care and productivity occupations. Return to leisure should be a priority of rehabilitation to support a person’s physical, cognitive, social, and emotional well-being. Consequently, the aim of this article was to review the research evidence on engagement in leisure occupations among community-dwelling adults living with ABI. A six-step scoping review was conducted searching five databases. Articles were included if they focused on leisure engagement post-stroke or traumatic brain injury. Seventeen studies were included. Leisure engagement decreased post-ABI with engagement primarily in solitary, sedentary, cognitively inactive, home-based leisure. Leisure engagement was impacted by personal and contextual factors. The findings identify a need to focus on and address changes to leisure following ABI, with exploration of why these changes have occurred beyond personal factors.
Plain Language Summary
The article provides a summary of the available literature surrounding engagement in leisure occupations among people with acquired brain injury.
Introduction
Rehabilitation following an acquired brain injury (ABI) as a result of traumatic brain injury (TBI) or stroke is designed to reduce disability and enable individuals to maximize participation in self-care, productivity, and leisure occupations. However, it is common for focus of rehabilitation efforts to be directed toward self-care and productivity occupations and roles, with subsequent unmet needs when a return to leisure occupations becomes a focus following discharge from inpatient services (Andrew et al., 2014; Beadle et al., 2020; Eriksson et al., 2006). Leisure represents a category of occupations that are non-obligatory, intrinsically motivated, and typically completed for pleasure or enjoyment (Molineux, 2017). Engagement in leisure has protective benefits for cognitive, physical, and mental health of adults (Bone et al., 2022; Brajša-Žganec et al., 2011; Kuykendall et al., 2015; Lu, 2011; Sala et al., 2019). It is therefore important that people living with an ABI are supported to remain engaged in leisure occupations within the community.
Studies of occupational gaps following stroke suggest changes in engagement in hobbies (Svensson et al., 2019), sports (Hodson et al., 2021; Svensson et al., 2019), outdoor life (Bergström et al., 2012; Hodson et al., 2021; Svensson et al., 2019) and travel for pleasure (Bergström et al., 2012). The development of interventions to support retained engagement in leisure in the community may seem like a natural progression. However, any attempts toward development of an intervention to address leisure engagement must be completed with due attention to the informants of evidence-based practice, namely the research evidence, client beliefs and values, contextual influences, and clinician-related factors (Hoffmann et al., 2017).
This article focused on one informant of evidence-based practice, the research evidence regarding leisure engagement following ABI. We have identified that there were no existing reviews of the literature specific to engagement in leisure occupations following ABI. Therefore, the purpose of this scoping review was to systematically examine and critique the research that had a specific focus on engagement in leisure occupations in the community following an ABI. This knowledge may be used to guide occupational therapy practice and future research.
Method
The scoping review followed Arksey and O’Malley’s (2005) six-stage framework, incorporating revisions outlined by Levac et al. (2010) and a critical appraisal of the literature.
Stage 1: Identify the Research Question
The research team developed the research question:
Research Question 1 (RQ1): What is the current research evidence regarding engagement in leisure occupations of community-dwelling people living with ABI?
Stage 2: Identify Relevant Studies
The following search strategy was used to identify relevant studies: “stroke” or “cerebrovascular accident” or “cva” or “brain injur*” or “tbi” or “abi” AND “leisure” or “hobb*” or “recreation*” or “meaningful activit*.” The search strategy was replicated across CINAHL, Medline, Embase, Scopus and PsycINFO with changes only made if required by the functions of the database. All articles were extracted on February 13, 2022, uploaded to Endnote™ (The EndNote Team, 2013) and duplicates were removed.
Stage 3: Study Selection
Studies were included if they: provided an in-depth exploration of leisure as a primary outcome, included participants over 18 years of age living with the impacts of a stroke or TBI, were published after 2000, and were written in English. Studies were excluded if they were: gray literature, reviews, guidelines or protocols, conference abstracts, commentaries, primarily assessed non-leisure outcomes, evaluated a service or program, were conducted in an inpatient setting, or included responses from people other than those living with ABI (e.g., clinicians, carers). The inclusion of research related to people living with either TBI or stroke recognizes that despite some variation in ongoing sequelae, both groups receive treatment and rehabilitation in services with a similar focus to reduce ongoing impacts on their daily lives, including their leisure participation (Goldman et al., 2022; Laver et al., 2014; Li et al., 2014).
In line with the study’s aim to explore engagement in leisure, only studies where leisure was a primary focus were included, with those which focused on efficacy of leisure as an intervention excluded. Eligibility criteria were refined during title and abstract screening through collaborative discussion among the research team to include studies that collected data from inpatients and outpatients if the findings were reported separately for each cohort. Article titles were screened by the first author and irrelevant articles were removed. The remaining articles were uploaded to Covidence (Veritas Health Innovation, 2022), an online program that supports the screening of research articles, allowing for two researchers to independently screen articles at the same time. All research team members contributed to the title and abstract screening process and articles that met or appeared to meet the inclusion criteria proceeded to full-text review. Full-text review was completed as per the Covidence protocols and any conflicts were resolved through discussion.
Stage 4: Charting the Data
The lead author completed the data extraction process using a purpose designed charting form. Study characteristics and main findings were extracted (Table 1) including data that represented the main themes and sub-themes of qualitative studies. Data extraction was checked by a second member of the team to ensure accurate representation.
Summary of Included Studies.
Note. JBI = Joanna Briggs Institute; TBI = traumatic brain injury; ADL = Activities of Daily Living; ANOVA = Analysis of Variance; ANCOVA = Analysis of Covariance.
NIHSS: National Institute of Health Stroke Scale, measures severity of symptoms associated with stroke. Scores range 0–42, No symptoms: 0, mild: 1–5, moderate: 5–14, severe: 15–24, very severe >25 (Brott et al., 1989). bGCS: Glasgow Coma Scale, assesses the depth and duration of impaired consciousness and coma. Scores range 3–15, higher scores indicate higher level of consciousness (Teasdale & Jennett, 1974). cmRS: Modified Rankin Scale, measures post-stroke functional independence. Scores range 0–5, No symptoms: 0, no significant disability: 1, slight disability: 2, moderate disability: 3, moderately severe disability: 4, severe disability: 5 (van Swieten et al., 1988). dMethodology for Amarshi et al. (2006b) was detailed in a separate paper, Amarshi et al. (2006a).
Stage 5: Collating, Summarizing, and Reporting Results
The extracted data were collated to summarize the characteristics of the studies. The extracted research questions and findings of the studies were reviewed, and preliminary categories were developed for reporting. During this process, it was identified that some findings were specific to rates of engagement in leisure, with and without comparison such as pre- and post-injury, while others were related to demographic factors, barriers and enablers, and satisfaction with engagement. The preliminary categories were reviewed by the team, with minor changes. One author developed the results using the categories, which were confirmed following a final review by the team.
Stage 6: Consultation
A summary of findings was reviewed by an individual with lived experience of stroke.
Critical Appraisal
Each article was appraised by two researchers using the Joanna Briggs Institute (JBI) critical appraisal tools (JBI, 2020). The JBI tools were designed to assist in the assessment of the trustworthiness, relevance, and results of published papers (JBI, 2020). The JBI tools were chosen as the suite of tools contains checklists for studies with a range of methodological designs. Where the author explicitly stated the methodological approach, the appraisal was completed accordingly. If not stated, the research team determined the approach before completing the appraisal. After independently appraising the articles, the researchers discussed the results to determine the methodological quality of the articles.
Results
Seventeen studies were included (Figure 1), with 13 involving people living with stroke (Amarshi et al., 2006b; Hildebrand et al., 2012; Hong & Yoo, 2019; Norlander et al., 2016, 2018, 2022; O’Connell et al., 2013; O’Sullivan & Chard, 2010; Schnitzler et al., 2019; Tang et al., 2018; Verberne et al., 2018; Vincent-Onabajo & Blasu, 2016; Yi et al., 2015). Three studies included people living with TBI (Bier et al., 2009; Brown et al., 2003; Wise et al., 2010) and one study included people living with ABI due to trauma, stroke, or other neurological impairment (Fleming et al., 2011). Two studies included both in- and out-patients (Fleming et al., 2011; O’Connell et al., 2013) and only the data related to out-patients were used in this review. See Table 1 for a summary of included studies. All reported findings were significant.
Study Selection
Study Locations
Studies were primarily conducted in Western regions: seven in Europe (Norlander et al., 2016, 2018, 2022; O’Connell et al., 2013; O’Sullivan & Chard, 2010; Schnitzler et al., 2019; Verberne et al., 2018), six in North America (Amarshi et al., 2006b; Bier et al., 2009; Brown et al., 2003; Hildebrand et al., 2012; Tang et al., 2019; Wise et al., 2010) and one in Australia (Fleming et al., 2011) (See Table 1). Two studies were conducted in Asia (Hong & Yoo, 2019; Yi et al., 2015) and one in Africa (Vincent-Onabajo & Blasu, 2016).
Sample Characteristics
Eight of the studies with people following stroke included predominantly older adults (mean age 65 ≥ years) (Amarshi et al., 2006b; Norlander et al., 2016, 2018, 2022; Hong & Yoo, 2019; O’Sullivan & Chard, 2010; Verberne et al., 2018; Yi et al., 2015). Participants with TBI were younger, with mean ages between 35.5 years and 42.3 years (Bier et al., 2009; Brown et al., 2003; Fleming et al., 2011; Wise et al., 2010). Ten studies reported injury severity (Bier et al., 2009; Brown et al., 2003; Fleming et al., 2011; Hildebrand et al., 2012; Norlander et al., 2016, 2018, 2022; O’Connell et al., 2013; Verberne et al., 2018; Vincent-Onabajo & Blasu, 2016), however, there was no consistency in the methods used to measure severity, and severity varied within and between study populations. The time post-injury or event ranged from 5.6 months (Bier et al., 2009) to 15 years (Norlander et al., 2018, 2022).
Approaches to Measurement of Leisure Engagement
Seven studies used in-depth interviews (Amarshi et al., 2006b; Bier et al., 2009; Brown et al., 2003; Norlander et al., 2018, 2022; O’Sullivan & Chard, 2010; Schnitzler et al., 2019), three of which integrated questions from pre-existing measures (Bier et al., 2009; Brown et al., 2003; Schnitzler et al., 2019) (see Table 2). The remaining studies used questionnaires or surveys to assess leisure by using pre-existing measures (Fleming et al., 2011; Hildebrand et al., 2012; Hong & Yoo, 2019; Norlander et al., 2016; Tang et al., 2019; Verberne et al., 2018; Wise et al., 2010) or adapting pre-existing measures to create questionnaires (Yi et al., 2015), creating their own questionnaires (Fleming et al., 2011; Vincent-Onabajo & Blasu, 2016), or drawing on questions from other recently conducted studies (O’Connell et al., 2013) (see Table 2). Varying methods examined change in individual leisure occupations pre- and post-ABI including the percentage of participants who decreased, discontinued, or increased participation (Fleming et al. (2011), calculation of activity ratios (Wise et al., 2010; Yi et al., 2015), and comparison of pre- and post-ABI engagement (Bier et al., 2009; Hong & Yoo, 2019; O’Connell et al., 2013).
Measures Used to Assess Leisure Engagement.
Engagement Compared with Non-Disability Population
Brown et al. (2003) found that those with TBI were less active across all areas of social recreational participation than those with no disability (t = 4.9, p ≤ 0.01). Schnitzler et al. (2019) found that participants living with stroke were less likely to participate in a range of leisure occupations (see Table 1), with age- and sex-adjusted odds ratios from 0.21 to 0.77.
Engagement Pre- and Post-Injury
Twelve studies reported that participants decreased their engagement in leisure occupations post-ABI (Amarshi et al., 2006b; Bier et al., 2009; Fleming et al., 2011; Hildebrand et al., 2012; Hong & Yoo, 2019; Norlander et al., 2022; O’Connell et al., 2013; O’Sullivan & Chard, 2010; Verberne et al., 2018; Vincent-Onabajo & Blasu, 2016; Wise et al., 2010; Yi et al., 2015). Authors reported that post-TBI individuals experienced a decrease in the frequency and range of leisure occupational engagement (Bier et al., 2009; Yi et al., 2015), discontinuing or decreasing participation in previous leisure occupations (Fleming et al., 2011; Wise et al., 2010). Similarly, those living with stroke experienced a decreased number and type of leisure occupations (Amarshi et al., 2006b; Hildebrand et al., 2012; O’Sullivan & Chard, 2010; Yi et al., 2015). See Table 1 for statistical findings. In contrast, some reported increased engagement in certain leisure occupations (Amarshi et al., 2006b; Fleming et al., 2011; Wise et al., 2010; Yi et al., 2015). Post-ABI engagement was typically in leisure occupations which were more sedentary (Hong & Yoo, 2019; O’Sullivan & Chard, 2010; Vincent-Onabajo & Blasu, 2016; Yi et al., 2015), less cognitively active (Hong & Yoo, 2019; Vincent-Onabajo & Blasu, 2016), more solitary (Bier et al., 2009; O’Sullivan & Chard, 2010; Yi et al., 2015) and more home-based (Fleming et al., 2011; Wise et al., 2010) post-ABI. See supplemental file for change patterns in specific leisure occupations.
Factors Associated With Leisure Engagement
Demographic Factors
Age was reported to have both no association (Hildebrand et al., 2012; Vincent-Onabajo & Blasu, 2016; Wise et al., 2010) and negative correlations with leisure (Norlander et al., 2016; Yi et al., 2015). There were predominantly no gender differences (Hildebrand et al., 2012; Vincent-Onabajo & Blasu, 2016; Wise et al., 2010; Yi et al., 2015) but one study reported that females had greater leisure retention than males (Hong & Yoo, 2019). There were mixed findings reported in relation to education (Hildebrand et al., 2012; Hong & Yoo, 2019; Verberne et al., 2018; Vincent-Onabajo & Blasu, 2016; Yi et al., 2015), positive correlations between leisure and employment (Brown et al., 2003; Vincent-Onabajo & Blasu, 2016), and a range of personal characteristics (see Table 1; Amarshi et al., 2006b; Norlander et al., 2018, 2022).
Clinical Factors
Time since injury was generally positively associated with leisure (Bier et al., 2009; Brown et al., 2003; Vincent-Onabajo & Blasu, 2016), with one study reporting no association (Yi et al., 2015). Other positive correlations included cognitive functioning (Verberne et al., 2018; Yi et al., 2015), ability to walk a few hundred meters and drive a car (Norlander et al., 2016), higher levels of independence (Bier et al., 2009; Norlander et al., 2018; O’Sullivan & Chard, 2010; Yi et al., 2015), and lower levels of fatigue (Brown et al., 2003).
Environmental Factors
Professional and organizational support (Amarshi et al., 2006b; Norlander et al., 2018) and social support, primarily from family and friends, were enablers of leisure engagement (Amarshi et al., 2006b; Norlander et al., 2016, 2018; O’Sullivan & Chard, 2010).
Architectural barriers in the home (Bier et al., 2009) and inaccessibility of occupations (Norlander et al., 2018; O’Connell et al., 2013) impacted engagement. Tang et al. (2019) found that physical and structural environmental barriers, including infrastructure design, natural environment, or other aspects of surroundings (lighting, noise and crowds), were the most frequently encountered barriers and largest in magnitude. Refer to Table 1 for detailed reporting.
Satisfaction and Leisure Participation
Seven studies discussed satisfaction associated with leisure engagement (Amarshi et al., 2006b; Bier et al., 2009; Fleming et al., 2011; O’Sullivan & Chard, 2010; Verberne et al., 2018; Wise et al., 2010; Yi et al., 2015). Participants had a negative perception of their reduced leisure participation (Bier et al., 2009; Wise et al., 2010; Yi et al., 2015) resulting in frustration and annoyance (O’Sullivan & Chard, 2010). Contrastingly, Fleming et al. (2011) found there were no differences in satisfaction with leisure participation pre- and post-ABI. Leisure engagement was linked to a sense of purpose and meaning (Amarshi et al., 2006b). Finally, one study reported that satisfaction increased over time and higher satisfaction was associated with being male, lower stroke severity, higher independence in activities of daily living, and higher cognitive functioning (Verberne et al., 2018).
Critical Appraisal
This review included three cohort studies (Norlander et al., 2016; Tang et al., 2019; Verberne et al., 2018), four qualitative studies (Amarshi et al., 2006b; Norlander et al., 2018, 2022; O’Sullivan & Chard, 2010) and 10 cross-sectional studies (Bier et al., 2009; Brown et al., 2003; Fleming et al., 2011; Hildebrand et al., 2012; Hong & Yoo, 2019; O’Connell et al., 2013; Schnitzler et al., 2019; Vincent-Onabajo & Blasu, 2016; Wise et al., 2010; Yi et al., 2015) (Table 1). Cohort studies did not consistently include valid and reliable outcome measures or report on participants lost to follow-up. Authors of qualitative studies consistently demonstrated congruency between the research methodology, research questions, data collection, and analysis methods, however, they were less likely to state their philosophical perspective or locate themselves culturally or theoretically. Cross-sectional studies saw the largest variation in the methodological criteria. Although all used appropriate statistical analysis, authors did not all clearly describe inclusion criteria, participant populations and settings, the use of valid and reliable measures of ABI and leisure, and their identification and control of confounding factors. Many of the cross-sectional studies required participants to recall pre-injury leisure engagement long after their injury creating a significant risk of recall bias (Brown et al., 2003; Fleming et al., 2011; Hong & Yoo, 2019; Vincent-Onabajo & Blasu, 2016; Wise et al., 2010; Yi et al., 2015).
Discussion
The scoping review included 17 studies of variable methodological quality that investigated leisure engagement of people living in the community following ABI.
People with ABI engaged less in pre-injury leisure occupations and increased engagement in leisure occupations that were sedentary and solitary. The individualized nature of engagement in leisure occupations was highlighted, and associations were identified with varying factors for example, time from injury, presence of cognitive or motor impairments, presence of social supports, and environmental influences. The findings that people with ABI have lower engagement in leisure occupations than their peers, emphasize the need for future focus from both a clinical and research perspective.
People living with ABI engaged less in leisure than they did prior to their injury, irrespective of the length of time post-injury, with time from event ranging from <6 months (Bier et al., 2009; Verberne et al., 2018) to 15 years (Norlander et al., 2018, 2022). The rates of engagement in individual occupations were variable across the studies, which may be explained by the unique experience of individuals including the variable presentation of ABI symptomology (Entwistle & Newby, 2013), the subjective nature of leisure occupations (Sellar & Stanley, 2010), and the unique environments of the individual (Amarshi et al., 2006b; Bier et al., 2009; Norlander et al., 2016, 2018; O’Connell et al., 2013; O’Sullivan & Chard, 2010).
In particular, the impact of environmental influences (social, physical, and organizational) suggests that prioritization of resourcing to support leisure occupations following return to home may be required. A client-centered approach within a hospital setting may support engagement within the inpatient context, however, this may not be transferable to the individuals’ community contexts. An intervention is considered complex if there is a need to tailor the intervention to the different people receiving the intervention, there are different contexts and settings, and a range of possible outcomes (Craig et al., 2008). Therefore, it is proposed that a complex intervention may be required to address leisure engagement after ABI.
The implications of increasing engagement in sedentary, cognitively inactive, solitary, and home-based leisure occupations should be explored further, with respect to health and well-being and attention to exploration of individual preferences. Most authors reported reduced satisfaction associated with leisure engagement, except for Fleming et al. (2011) who found no significant difference in satisfaction with leisure participation pre- and post-ABI. The changes to home-based leisure occupations may be due to a preference for engagement in environments that are quieter and less crowded, resulting in less impacts on ABI-related changes such as fatigue and processing.
As found by Tang et al. (2019), the built environment, crowds, light, and noise can be barriers to engagement and lead to negative experiences. Adopting a critical approach, where disability is seen as the result of physical and societal structures and institutional norms that exclude people who live with impairments (Goering, 2015), may prove helpful for the identification of broader, large-scale changes that address engagement in leisure occupations for all. In contrast, during the modified consultation phase for this review, the researcher with lived experience of stroke suggested that engagement in leisure activities within the home may be a personal preference, rather than the result of barriers. This should be explored further, with attention to the preferences of the individuals and exploration of how decisions are made with respect to engagement in leisure.
Limitations
This review included articles with inconsistent methodological quality, use of valid outcome measures, and means for examining leisure. Therefore, our conclusions must be interpreted and applied with some caution. Although the research team attempted to remain objective in the inclusion of studies based on leisure criteria, given the subjective nature of leisure occupations, the articles chosen for inclusion and the interpretation of results, may have been biased by the researchers’ understanding of leisure. Furthermore, by choosing to exclude papers that explored leisure, but not as a primary outcome, some papers that provided an in-depth exploration of leisure may have been excluded. By including only full-text journal articles, new and emerging research in this space may also have been excluded. Most studies identified in this review involved participants with stroke, who were predominantly over the age of 65. Although stroke has historically been associated with older age, the incidence of stroke in the younger population is growing (Boot et al., 2020), with 25% of people experiencing a first-time stroke under the age of 65 (Lannin et al., 2017). Leisure occupations differ depending on age (Sellar & Stanley, 2010) with younger adults often balancing the demands of work, raising a family, and participating in leisure. Thus, further research is needed to better understand the leisure engagement of young people living with ABI. Finally, given that what constitutes a leisure occupation is significantly influenced by culture (Sellar & Stanley, 2010), it is important to note there was a paucity of studies conducted in Eastern and Global South regions. Together, this highlights the need for leisure occupational engagement to be explored more rigorously and with greater geographical diversity.
Conclusion
The current evidence indicates that adults living with ABI participate in leisure with reduced variety and frequency, and at lower rates than their peers. Engagement in leisure post-ABI is typically sedentary, solitary, physically and cognitively inactive, and home-based. The variable outcomes for satisfaction and changes in leisure pre- and post-ABI confirm the highly unique and contextual nature of leisure occupations, which suggest that a complex intervention is required. There is a bias in the existing research toward older adults which clearly links person-related barriers and enablers to leisure engagement. However, the research also suggests that structural and systemic barriers may contribute to the diverse experiences of individuals when attempting to re-establish leisure occupations that are social, active, and community-based. There are gaps in our evidence regarding support for leisure engagement following ABI and further research applying participatory approaches is required to address the gap in practice.
Supplemental Material
sj-docx-1-otj-10.1177_15394492231221962 – Supplemental material for Leisure Engagement Among People Living With Acquired Brain Injury: A Scoping Review
Supplemental material, sj-docx-1-otj-10.1177_15394492231221962 for Leisure Engagement Among People Living With Acquired Brain Injury: A Scoping Review by Shane Trevorrow, Louise Gustafsson and Tenelle Hodson in OTJR: Occupational Therapy Journal of Research
Footnotes
Acknowledgements
The authors wish to acknowledge the lived expert with acquired brain injury who provided feedback during the research and development of this manuscript.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Supplemental Material
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References
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