Next Article in Journal
The Complex Matter of Requesting Support—Experiences of Persons with Intellectual Disability
Previous Article in Journal
Applying the Analytic Hierarchy Process (AHP) to Accessible Housing: A Multi-Disability Perspective
 
 
Font Type:
Arial Georgia Verdana
Font Size:
Aa Aa Aa
Line Spacing:
Column Width:
Background:
Review

Barriers and Facilitators to the Social Participation of Individuals Aging with a Long-Term Neurological Disability: A Scoping Review

1
School of Rehabilitation Sciences, Faculty of Medicine, Université Laval, Quebec, QC G1V 0A6, Canada
2
Centre for Interdisciplinary Research in Rehabilitation and Social Integration (Cirris), Québec, QC G1M 2S8, Canada
3
Research Centre on Aging, Health and Social Services Centre, University Institute of Geriatrics of Sherbrooke, Sherbrooke, QC J1H 2J7, Canada
4
School of Rehabilitation, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Sherbrooke, QC J1H 5H3, Canada
*
Author to whom correspondence should be addressed.
Disabilities 2025, 5(2), 49; https://doi.org/10.3390/disabilities5020049
Submission received: 10 March 2025 / Revised: 1 May 2025 / Accepted: 22 May 2025 / Published: 29 May 2025

Abstract

:
Supporting the social participation of individuals aging with long-term neurological disabilities is key to healthy aging. However, knowledge about the factors influencing their social participation remains limited and fragmented. Following the Joanna Briggs Institute methodology, this scoping review synthesized and integrated knowledge regarding the barriers and facilitators to the social participation of individuals aging with long-term neuro-disabilities. A search in four databases (MEDLINE, CINAHL, PsycInfo, and EMBASE) resulted in 18 studies involving 2587 participants with nine neurological conditions: stroke, multiple sclerosis, spinal cord injury, traumatic brain injury, aphasia, post-polio syndrome, spina bifida, cerebral palsy, and muscular dystrophy. A total of 38 barriers, 25 facilitators, and 4 factors with mixed influence to social participation were identified. Key reported barriers included the organic system (e.g., fatigue or pain) and macro environments (e.g., inaccessible built environment). The most common facilitators involved physical dimensions in personal factors (e.g., good physical functions) and micro-environments (e.g., supportive social environment). This review highlights the need for accessible infrastructure and community support to promote inclusivity and equity. Future research should focus on community-level factors and mixed study designs to provide robust evidence to improve social participation and healthy aging in this vulnerable population.

1. Introduction

For the first time in history, the number of older adults in the world has surpassed that of children under five [1], marking a significant demographic turning point. The aging of the population brings multiple challenges. At individual levels, older individuals have to face health issues that significantly impact their quality of life and well-being [2]. At societal levels, aging societies struggle to keep up with pressures on the healthcare system and social support [3]. Among health challenges with significant impacts on social care for older adults, neurological disabilities are a growing concern.
Defined as impairments in the nervous system that lead to functional limitations [4], neurological disability, or neuro-disability, restrains older adults’ basic and instrumental activities of daily living [5]. Neurological disabilities can occur suddenly, as in the case of a spinal cord injury following a traumatic event, or it can set in gradually, as in the case of a diagnosis of multiple sclerosis. Stancu et al. [6] report that neurological disorders such as dementia, stroke, epilepsy, and Parkinson’s disease are the leading causes of major disability in older adults and are responsible for nearly half of disabilities after age 65 and over 90% of serious dependency. Equally important, these conditions restrict older adults’ social participation, impacting their well-being further. Older adults with neurological disability experience significantly lower levels of social participation compared to other types of disability, such as orthopedic impairments [7]. One possible explanation for this is that older adults living with neurological disabilities often face mobility challenges that restrict their ability to engage in social activities [7]. Additionally, conditions, like dementia lead to decreased motivation and reduced variety in social activities, further isolating affected individuals [8].
As a crucial determinant of healthy aging, social participation refers to “a person’s involvement in activities providing interactions with others in community life and in important shared spaces, evolving according to available time and resources, and based on the societal context and what individuals want and is meaningful to them” [9]. A satisfactory level of social participation improves individuals’ social and emotional well-being [10]. For example, engaging in social activities is found to enhance their subjective well-being by reducing anxiety [11]. A longitudinal study on the Canadian population also found a positive association between frequent social participation and higher cognitive abilities, increased satisfaction with life, and fewer depressive symptoms [12].
Despite these benefits, access to social participation is unequal, especially for individuals in vulnerable situations, such as those living with a disability [13]. Inadequate cognitive functions have been identified as a main risk factor for social isolation among older adults [14,15]. Individuals living with certain neurological disorders like dementia, also have to face another significant barrier to social participation—dementism—which encompasses the stigma and discrimination associated with both age and cognitive decline [16].
While social participation is a crucial element for healthy aging [9,17], little is known about what facilitates and hinders participation in social activities for individuals aging with a neurological disability. In a systematic review of the barriers and facilitators to social participation for individuals aged 60 and over [18], few studies have focused on the social participation of older adults with a long-term disability. Since individuals living with long-term neurological disabilities may face specific early challenges between aging (ex: a sense of premature aging) and opportunities for social participation [19], it is important to explore how these experiences may affect their social participation. Given that a neurological disability can lead to a reduction in functional abilities [20] and an increased risk of social isolation [21], it is essential to support individuals in this condition to maintain their social participation. Thus, this study aimed to synthesize and integrate knowledge concerning the social participation of older adults living with a long-term neurological disability. Seeking to synthesize knowledge concerning the barriers and facilitators to their social participation, this study is situated in a larger project aimed at co-constructing a health promotion program designed to support the social participation of individuals aging with long-term neurological disabilities.

2. Materials and Methods

This study adopted a scoping review design following the methodology of the Joanna Briggs Institute [22]. Since a scoping review is an appropriate choice for mapping knowledge on themes of interest, it was chosen to identify research gaps and needs related to the social participation of older adults living with a long-term neurological disability. This study design could also help identify key characteristics and elements related to the concepts of aging with long-term disability and social participation.

2.1. Research Questions

  • What is the state of knowledge concerning social participation among adults aging with a long-term neurological disability?
  • What are the barriers and facilitators to social participation in the target population?

2.2. Concepts

Although several different definitions of social participation exist in the current literature [9], researchers have not reached a consensus on the ideal definition to use. For the purposes of this study, social participation is defined according to two complementary definitions: that of Levasseur et al. [9] and that of the conceptual model of the Human Development Model—Disability Creation Process[HDM—DCP] [23]. Levasseur et al. [9] provide an eloquent definition of the concept of social participation that helped focus the team’s approach, while the HDM—DCP [23] operationalizes the concepts aimed at documenting the obstacles and facilitators to social participation.
The concept of social participation proposed by Levasseur et al. [9] takes into account the following three important dimensions: when, why, and where individuals become involved in social activities. Firstly, its temporal dimension is reflected by its evolution according to the time and resources available. The why dimension explains that a person tends to participate socially to develop meaningful relationships, enjoy pleasurable group activities, or even become involved in collective projects [24]. This highlights the importance of activities that are in line with one’s interests. Finally, Levasseur et al. [9] indicate that individuals tend to participate socially in their community, where they can have social interactions and take part in activities in their neighborhood or other public spaces.
In the HDM—DCP model, social participation is operationalized as life habits resulting from the interaction between personal factors and environmental factors [23]. Social participation, therefore, can be impacted by various barriers and facilitators. A barrier to social participation is defined as an element that limits or hinders an individual’s social participation [17]. For example, buildings with only stairs represent a considerable obstacle for individuals aging with disabilities, excluding them from social activities [25]. A facilitator, on the contrary, is defined as an element that facilitates and supports an individual’s social participation [17]. For example, convivial and safe social environments can foster a person’s social participation [26], hence the importance of investigating them.
The HDM—DCP considers that a disability cannot be attributed only to individuals but rather to the interaction between personal and environmental factors that limit their social participation [23]. The realization of life habits serves as an indicator of individuals’ social participation based on a continuum ranging from optimal social participation to a situation of disability. This perspective provided by the HDM—DCP helps identify the systemic obstacles limiting individuals from exercising their rights to satisfactory social participation.
The HDM—DCP [23] applies to all types of populations, including those aging with a disability, with the aim of understanding the interaction between factors related to the individual, factors related to the environment, and life habits. The HDM—DCP indicates that individuals’ life habits, i.e., their daily activities (e.g., communication and travel) and social roles (e.g., responsibilities and interpersonal relationships), are influenced first by personal factors. These include identity factors (e.g., sociodemographic characteristics and diagnosis), organic systems (e.g., muscular and nervous systems), and capability (e.g., intellectual and motor skills). Environmental factors also have a considerable impact on individuals’ life habits and can be classified into micro- (personal), meso- (community), and macro (societal) levels. Micro-environments refer to individuals’ personal dimensions and the immediate surroundings in which they conduct their daily life habits, such as their social network or their home. Meso-environments represent factors at the intermediate level that influence a broader community, such as cities’ transportation services. Macro environments exert the broadest influence, encompassing societal, cultural, and political contexts in which individuals live and age. Regional or national policies regarding governmental support for individuals living with neuro-disability are examples of influencing factors from macro environments. Environmental factors at these three levels can represent both facilitators and barriers to the realization of a person’s life habits.

2.3. Eligibility Criteria

2.3.1. Participants

This scoping review focused on studies targeting individuals aged 50 and over who had lived with a neurological disability, including—but not limited to—stroke, spinal cord injury, traumatic brain injury, multiple sclerosis, muscular dystrophy, post-polio syndrome, cerebral palsy, and spina bifida, for at least five years. The duration of the disability was chosen based on pragmatic considerations to ensure a sufficient number of studies for this scoping review. A period of five years allows individuals aging with a disability to integrate various coping strategies in response to a more stable neurological condition, which may facilitate their social participation. The minimum age of participants was set at 50 in recognition of the fact that individuals living with a neurological condition age more rapidly, resulting in disability. Studies that focused exclusively on a population with a predominant diagnosis of a mental health disorder (e.g., anxiety disorder, depressive disorder, and bipolar disorder) were excluded from the scoping review.

2.3.2. Context

No studies were excluded for cultural, geographic, or ethnic reasons.

2.3.3. Document Types

This scoping review considered all types of qualitative and quantitative designs, such as descriptive exploratory studies and longitudinal cohort studies. No limitation in terms of study design was imposed.
The articles included had to be primary studies and peer reviews. The reference lists of literature reviews on topics relevant to our research questions were scrutinized to identify pertinent primary articles for inclusion. Since the subject of social participation among individuals living with long-term disabilities is an emerging field of research, only articles published after 2000 were included. Table 1 summarizes the criteria.

2.4. Search Strategy

The search strategy aimed to locate published studies on social participation in adults aging with a long-term neurological disability. The search strategy was developed with the help of a librarian with expertise in rehabilitation science research. An initial MEDLINE search (Ovid) was carried out to identify articles on the subject. The keywords identified in these articles, as well as free and controlled vocabulary terms, were used to develop a comprehensive search strategy for MEDLINE (Ovid; see Appendix ATable A1). The search strategy was then adapted for each of the following databases: CINAHL (EBSCO), PsycINFO (Ovid), and EMBASE (Elsevier). The records found from each database were examined in greater details. Only studies published in English and French were included, given that all the authors are fluent in both languages. The search was limited to studies published since 2000, considering the time constraint due to the academic context. Relevant articles from other sources (e.g., expert recommendations) that met the inclusion criteria were also included.

2.5. Source of Evidence

After running the database search strategy, all records were compiled and uploaded to EndNote, version 21 (Clarivate Analytics, Philadelphia, PA, USA) and Covidence, where duplicates were removed.
Two examiner pairs (N.B. and L.G.; G.B. and S.K.) conducted a pilot test to determine which articles to include according to the scoping review’s inclusion criteria. Each pair screened the same 100 records based on their title and abstract. Since a cohesion percentage of 75% was not achieved, a second screening of 100 sources was conducted. Once the cohesion percentage reached at least 75%, the examiners divided the records to be sorted based on the record IDs provided in Covidence. The first pair (N.B. and L.G.) screened odd-numbered records, and the second pair (G.B. and S.K.) screened even-numbered records.
Next, the pairs examined the full text of 25 sources. Given the iterative nature of this review, the choice of inclusion and exclusion criteria was revised several times according to the studies identified. Considering that the percentage of cohesion between the pairs of examiners did not reach at least 75%, a second examination of 25 sources was carried out. At the third examination, the percentage of cohesion between the pairs of examiners reached 75%. To ensure research fidelity, the first pair (N.B. and L.G.) examined even-numbered records, and the second pair (G.B. and S.K.) examined odd-numbered records. At each stage of the selection process, any conflicts within the pairs were resolved through discussion, and if necessary, the second duo was consulted for further advice. The research supervisor (S.T.) was called upon to resolve any conflicts in decision-making regarding the inclusion and exclusion of sources. The results of the search and selection process were presented in a schematic diagram: Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Review (PRISMA-ScR, see Figure 1) [27]. The use of this flowchart ensured transparency and rigor by reporting any decision step by step.

2.6. Data Extraction

Using a data extraction table developed by the research team, two authors extracted data from the selected studies. The extracted data included (1) DOI; (2) the authors; (3) title; (4) year of publication; (5) study location; (6) aims and objectives; (7) nature and design; (8) information about the sample (the number of participants, the sample’s mean age and range, participants’ diagnosis, severity of disease, time since diagnosis, marital status, living situation, urbanity, education level, annual income, and employment status); (9) data collection methods; (10) details of the methodology; (11) the adopted conceptualization or definition of social participation; and (12) facilitators and barriers to social participation. A research professional (A.L.) also contributed to the data extraction process, reinforcing the validity of the scoping review.
The final extraction table (see Appendix ATable A2) was iteratively modified throughout the process of extraction, as recommended when conducting scoping studies. Any disagreements between the examiners during the extraction were resolved by discussion or with the intervention of an additional author if necessary.

2.7. Data Analysis

Data were categorized in a table based on the various concepts derived from the HDM—DCP [23]. The results were initially divided according to the types of factors to which they referred: either personal factors or environmental factors. Regarding personal factors, the results were classified according to three distinct sub-categories: (1) identity factors, (2) organic systems, and (3) capabilities. As for environmental factors, the results were regrouped into three distinct sub-categories: (1) micro-, (2) meso-, and (3) macro environments. Next, a thematic analysis was conducted to establish the themes associated with each identified outcome. A research professional (A.L.) was involved in validating the classification of outcomes according to the themes formulated. Then, a narrative synthesis of the themes was performed to clearly identify the facilitators and barriers to social participation for individuals aging with a long-term neurological disability.

3. Results

3.1. Description of Selected Articles

The literature search resulted in 9908 papers, to which five papers were added manually, and one article was found via citation search (see Figure 1). Out of these records, 2656 duplicates were excluded. Next, 7134 papers were excluded by their title and abstract in a preliminary review. A total of 122 papers were assessed for eligibility. After the examination of each paper’s full text, 104 papers were excluded for the following reasons: the paper did not meet the age criterion (N = 27); the paper did not address a long-term disability (N = 27); the paper did not address a neurologically based disability (N = 11); the paper did not address social participation (N = 22); the paper was a conference abstract (N = 15); the paper was an oral presentation or research poster (N = 1); or the paper was a dissertation (N = 1).
A total of 18 articles were included in this scoping review after the eligibility assessment (Table 2). Four studies were conducted in the United States (22%), four in Sweden (22%), three in the United Kingdom (16%), three in Canada (16%), two in Australia (11%), one in Italy (5%) and one in the Netherlands (5%). Of these studies, eight were quantitative (44%), nine were qualitative (50%), and one was a mixed study (6%).
The studies included a total of 2587 participants (mean age: 63.2 years) who lived with a variety of neurological conditions for an average of 16.7 years. Sample homogeneity was consistent across all studies except for two: Both Clarke et al. [30] and Remillard et al. [42] used a heterogeneous sample. The participants lived with the following neurological conditions: stroke (N = 8), multiple sclerosis (N = 3), spinal cord injury (N = 4), post-stroke aphasia (N = 2), post-poliomyelitis syndrome (N = 2), cerebral palsy (N = 1), spina bifida (N = 1), craniocerebral trauma (N = 1), and muscular dystrophy (N = 1).

3.2. Facilitators and Barriers to Social Participation

The selected articles reported multiple factors influencing the social participation of individuals aging with a long-term neurological disability (Table 3). Specifically, a total of seventeen facilitators, twenty-three barriers, and four factors with mixed influence or an unclear influencing direction for social participation were attributable to personal factors. A total of eight facilitators and fifteen barriers were attributable to environmental factors.

3.2.1. Personal Factors

Identity Factors

Sociodemographic factors. Five articles examined sociodemographic factors (Table 3). These included age [30,31,36], gender [31], the number of years since diagnosis [30,32], marital status [30], post-secondary education [30], and household income [41].
While younger age was a facilitator of social participation [31], older age represented a barrier [30]. In investigating factors related to the level of social participation of 150 participants living with aphasia secondary to stroke (mean age = 64.2, average disability duration = 7.6 years), a quantitative study in the UK found that younger participants showed a higher level of social participation [31]. Conversely, a longitudinal cohort study in the USA found that regardless of the time elapsed since diagnosis or injury, participation decreased in older age groups [30].
Other sociodemographic characteristics identified as facilitators for participants’ social participation included identifying as a woman, having a higher education level, and never being married. Dalemans et al. [31] reported that women had a higher level of social participation than men (chi-square = 112.9; p = 0.01). In the longitudinal cohort study conducted by Clarke et al. [30], participants who had never married and participants with a college diploma also had significantly better social participation than their counterparts.
Two studies reported mixed findings on the influence of the number of years since diagnosis. While Clarke et al. [30] identified a greater number of years since diagnosis to be a facilitator of social participation, Dalemans et al. [32] did not find the same conclusion. Concretely, Clarke et al.’s longitudinal cohort study [30] found that a greater number of years since diagnosis was associated with a better level of social participation in a sample of 1331 participants living with mobility disabilities, thanks to the coping strategies participants acquired over time. However, in exploring the determinants restricting the degree of participation, as measured by the London Handicap Scale (LHS) questionnaire, in a post-stroke population, Dalemans et al. [32] found no differences in social integration as a function of duration since disability (0.26; p = 0.02).
Finally, a low household income was identified as a barrier to social participation in a qualitative study exploring factors influencing long-term social participation among 10 Swedish individuals (mean age = 72) who had suffered a stroke 15 years earlier [41]. Specifically, limited income due to premature retirement was reported to hinder participants from engaging in activities such as going to the cinema or eating out.
Personality traits. Four articles examined the impact of individual personality traits on the social participation of individuals aging with a long-term neurological disability (Table 3). Traits such as sociability [37,41] and perseverance [36,37] were clear facilitators of social participation. For example, Le Dorze et al.’s study [37] on 17 Canadians living with aphasia secondary to stroke (mean age = 65.7, average disability duration = 5.7 years) found that participants’ determination to overcome communication challenges and present a sociable disposition facilitated their participation in social activities. While introversion was noted as an influencing factor without further explanation in Norlander et al.’s study [41], it was found to be associated with a limited possibility of interacting with friends in person in Sparling et al.’s study [44].
Attitudes. Five studies explored how individual attitudes of individuals aging with a long-term neurological disability facilitated or hindered their social participation (Table 3). Facilitators included positivity and motivation; barriers comprised negativity, avoidance, a lack of belonging, fear, and insecurity. On the one hand, being positive [37,41] and being motivated [32,34,37,41] were reported as facilitators of participants’ social participation. A qualitative study conducted by Dalemans et al. [32] explored how individuals (N = 20, mean age = 57.4 years) living with aphasia secondary to stroke for an average of 5.1 years perceived their participation in society. The study found that a person’s willingness and commitment to participate in group activities were factors favorable to their social participation.
On the other hand, having negative and avoiding attitudes [41], lacking a sense of belonging [32], having fears [36], and feeling insecure [41] hindered the social participation of individuals aging with a neurological disability. For example, participants in Dalemans et al. [32] often felt ashamed; they did not feel a sense of belonging; and some even felt unable to live with others. Participants also reported withdrawing from social and leisure activities out of fear of falling [36,41]. They avoided going to unfamiliar places, taking stairs, or using ramps to move to a different floor from the one they were on [36] or avoided the activities they perceived as risky and energy-demanding [41].
Life course. Only one study investigated the influence of life courses on the social participation of individuals aging with a neurological disability [45]. Concretely, this study found that the suitability of the activities and personal interests represented a facilitator of social participation. Conducted by Turcotte et al. [45] in Canada, this descriptive exploratory study aimed to gain insight into the aging experience of individuals living with craniocerebral trauma and to explore promising intervention avenues to foster this population’s social participation. The study included 10 participants, with an average age of 64.9 years and an average disability duration of 24.3 years. The authors reported that carrying out activities in line with their interests enabled participants to meet their personal goals and engage in social activities.
Acceptance and adaptation to disability. Two studies addressed acceptance and adaptation to disability [36,41]. They explored the acceptance of the condition, adaptation to disability, and the adoption of effective adaptive strategies. On the one hand, the ability to accept the condition resulting from living with a neurological disability was found to facilitate social participation since it supported motivation [41]. On the other hand, when individuals had difficulty accepting their condition, they showed signs of depression and lacked motivation to participate socially. Furthermore, individuals associated aging with diminished normal participation, which explained why they had lower expectations in terms of participation and, therefore, lower motivation.
Both capabilities to adapt to disability and the use of effective adaptive strategies were reported as facilitators of social participation among participants aging with stroke. According to Norlander et al.’s study [41], over time, some individuals were able to adapt to their residual disabilities by integrating them into their daily lives. This enabled them to perform the activities they did before the disability, facilitating their social participation. In Hoyle et al.’s study [36], participants reported adopting various adaptive approaches such as problem-solving, trial and error, and self-talk to overcome obstacles to their social participation. These strategies were considered effective in helping participants maintain their participation in activities.

Organic System

The nature of disability. Three studies addressed the nature of disability (Table 3). Clarke et al. [30] reported that individuals living with muscular dystrophy, multiple sclerosis, or post-polio syndrome experienced decreased social participation due to greater physical limitations compared to those with a diagnosis of spinal cord injury. Likewise, a qualitative study conducted by Matérne et al. [40] to explore how social participation and resilience contributed to the quality of life among individuals who had a stroke in Sweden found that having a diagnosis of secondary-progressive multiple sclerosis resulted in more restricted social participation than a diagnosis of primary-progressive multiple sclerosis. Finally, a cross-sectional study that aimed to describe the social participation of individuals who had a stroke found that there was a significant correlation between aphasia severity and an individual’s social participation. Participants with higher scores on the Frenchay Aphasia Screening Test (FAST), i.e., less severe aphasia, showed greater levels of social participation (r = 0.365; p < 0.01) [31].
Mental health comorbidities. Four studies examined the impact of mental health comorbidities and reported that mental health issues [41], such as depression [33,44] and mood swings [40], hindered the social participation of individuals aging with a neurological disability. According to Norlander et al. [41], an individual with mental health issues experiences multiple obstacles to social participation. These barriers are often difficult for individuals to overcome, restricting their long-term social participation. Likewise, social participation was found to be more limited when an individual’s depressive state increased (r = 0.40; p = 0.0006) [33]. Mood fluctuations as a consequence of stroke were also reported to hinder participants’ social participation in Matérne et al.’s study [40].
Physical dimension. A total of 12 studies addressed the physical dimension of personal factors (Table 3), identifying one facilitator and multiple barriers. Participants with better physical functions showed greater participation in work, leisure, and family activities in Clarke et al.’s longitudinal study [30]. Good physical function was also identified as a factor favorable to participants’ social participation in the studies by Dalemans et al. [31], and Turcotte et al. [45]. Conversely, having a physical disability was reported to be a barrier to participants’ social roles and activities [33,42,43]. For example, in Remillard et al.’s qualitative study [42], physical limitations were found to pose numerous challenges to individuals living with post-polio syndrome, neurological conditions, accidents, or traumatic events, particularly when driving and using public transport like a bus. This finding, however, contradicted that of a cross-sectional study where no significant relationship between physical capability and the frequency of social participation was found among 30 persons who had a stroke after controlling for age, gender, and motivation (r = 0.215; p > 0.05) [34].
Other identified barriers in physical dimensions included pain [30,38,39,41], fatigue [30,32,38,39,40,41], sleep problems [38], spasticity [39], muscle weakness [38,39], diminished reflexes [42], diminished dexterity [42], and dizziness [40]. According to Clarke et al. [30], participants who experienced more pain and fatigue daily reported more restrictions in their participation in social roles and activities with others. In Lundström et al.’s qualitative study [38] on individuals living with traumatic spinal cord injury, sleep problems were reported to cause concerns and necessitated a search for new strategies to help participants maintain daily participation. Similarly, muscle weakness and spasticity were identified as the main reasons why participants aging with a spinal cord injury no longer participated in active leisure activities [39].
Cognitive dimension. Four studies examined how the cognitive dimension, such as cognitive disabilities or concentration and memory difficulties, influenced the social participation of individuals living with neurological disabilities (Table 3). Conducting multivariate analyses, Cattaneo et al. [29] found that cognitive deficits were more associated with participation restrictions than physical dimensions in the population with multiple sclerosis. Likewise, individuals living with stroke [41] also reported that cognitive impairments led to a more challenging daily life. Finally, having concentration and memory difficulties were also reported to impact participants’ ability to engage in social activities negatively, leading to feelings of isolation [32].

Capability

Ability to mobilize environmental resources. Two studies examined the influence of individuals’ ability to mobilize environmental resources on their social participation and found its impact to be positive. Specifically, the ability to surround oneself with a supportive network, ask for assistance, and make good use of social participation opportunities helped individuals aging with neurological disabilities accomplish various activities, enhancing their day-to-day social participation [45] and reducing their risk of feeling lonely [37].
Intellectual activity skills. Four studies focused on intellectual activity skills, such as adequate knowledge about the condition [41], problem-solving skills [37,41], and planning skills [36,42]. Having adequate knowledge of the condition and problem-solving abilities led to feelings of being in control and confidence [41], and being a planner was identified as a personal quality that helped participants overcome participation challenges [36]. However, advanced transportation planning within a limited social circle could raise challenges, limiting a person’s trips within his or her community [42].
Motor activity skills. Four studies explored how motor skills, such as coordination and balance, influence the social participation of the population with neurological disabilities (Table 3). Poor coordination [41] and balance difficulties [29,32,40] were both reported as the cause of lower participation among those diagnosed with multiple sclerosis, aphasia, and stroke.

3.2.2. Environmental Factors

Micro-Environments

Social factors. Six studies investigated the social factors of the personal dimension, i.e., micro-environments, as indicated in the HDM—DCP (Table 3). In Clarke et al.’s longitudinal study [30], participants who perceived greater support from family and friends also reported a greater ability to participate in social roles and activities. The importance of having a supportive network for participants’ social participation was also found in the studies conducted by Le Dorze et al. [37], Hoyle et al. [36], and Norlander et al. [41]. In Matérne et al.’s qualitative study [40], individuals aging with stroke reported that treatment and support by others increased their feelings of being valuable and useful. Likewise, being in a supportive social environment, characterized by an act of giving individuals more time to express themselves, was found to foster the social participation of Swedish aging with aphasia [28].
Physical factors. Five studies examined the physical factors of the personal dimension (Table 3), with particular regard given to technological aids. The use of adapted technological aids was found to facilitate the social participation of individuals aging with neurological disabilities [30,38,39,41], especially when the aids were tailored to individuals’ specific needs [38]. However, physical environments that were not adapted to technological aids were detrimental to social participation [40]. For example, a participant in Matérne et al.’s study reported facing challenges regarding space to store his mobility scooter, associating it as a barrier to his participation.

Meso-Environments

Social factors. The social factors of the community dimension, i.e., meso-environments according to the HDM—DCP [23], were the focus of three studies (Table 3). The accessibility of meaningful community activities [41] and a familiar environment [28] were identified as facilitators of social participation. Barriers included the rhythm of community activities [45], inaccessible procedures [28], other individuals’s attitudes [28], and costs related to activities [45].
Regarding facilitators, when the community offered individuals opportunities to participate, their social participation was enhanced [41]. Likewise, a familiar environment, which refers either to a situation where a person is surrounded by individuals who are aware of their needs or to a constant physical environment, was also found to foster social participation [28].
As for barriers to social participation, while some participants in Turcotte et al.’s study [45] were able to take part in activities that matched their interests, they found it difficult to keep up with the rapid pace of these activities. In addition, inaccessible procedures requiring complex communication, whether written or verbal, such as having to answer numerous questions to order a cab over the phone or use an automated telephone system, hindered these individuals’s ability to obtain services effectively, thereby restricting their participation in social roles and activities [28]. In the same study, the discriminatory attitudes of others were reported to constitute major barriers to the participation of individuals aging with neurological disabilities. Examples of these behaviors included speaking fast, failing to allow sufficient time for others to respond, failing to listen attentively, and mocking or intrusively correcting others. Disparaging comments, such as telling individuals that they were useless or encouraging them to hide their condition, also contributed to the restricted social participation of this population. Finally, costs related to activities were identified as a barrier to the social participation of individuals living with neurological disabilities in Turcotte et al.’s study [45]. Specifically, one participant shared that the cost of activities was a limiting factor for him, as he did not have enough money to carry out the activities he wanted to.
Physical factors. Five articles examined how physical factors of the community dimension, i.e., meso-environments according to HDM—DCP [23], facilitated or hindered the social participation of individuals aging with a neurological disability (Table 3). Facilitators included accessible environments [41], quiet settings [32,35], and opportunities to participate socially [34]. Barriers comprised winter conditions [45], noise [35], and visually cluttered environments [35].
First, accessible environments like an adapted garden enabled participants to maintain their gardening activity, thus promoting their social participation [41]. Two studies indicated quiet and familiar environments as facilitators of social participation among individuals aging with aphasia [32,35]. The quietness and familiarity of the place made it easier for individuals living with aphasia to communicate and move around their community on their own because individuals in the surroundings were aware of the communication skills or difficulties of the person living with aphasia, making it easier for them to move around in the community [32]. Having more opportunities to participate socially also facilitated social participation. Gingrich et al. [34] found that social participation frequency was linked not only to the individual’s motivation but also to the participation opportunities within the environment. Therefore, the more adapted opportunities a physical environment offers to aging users with a neurological disability, the more their social participation can improve.
Regarding barriers to this population’s social participation, the presence of snow or ice outside limited an individual’s movements and, thus, their community participation [45]. Noise was another identified obstacle. In Howe et al.’s study [35], individuals living with aphasia reported restricted social participation in an environment with multiple background noises. These participants also reported that visually cluttered environments distracted them from a conversation, limiting their interactions with others [35].

Macro Environments

Social factors. Four articles (Table 3) discussed the impact of social factors from the societal dimension, i.e., macro environments according to the HDM—DCP [23]. On the one hand, having financial and practical government support [28,40] encouraged individuals aging with neurological disabilities to participate socially. For example, thanks to the financial and practical support from the government, a participant with paralysis after a stroke in Matérne et al.’s study [40] could adapt her vehicle, enabling her to move around to fulfill her professional and family obligations. On the other hand, participants’ social participation had to face multiple challenges related to insufficient government funding [28,42], inequitable standardized professional processes [28,41], the unreliability of public and adapted transport services [41,42], strict policies and regulations related to adapted transport [42], and the lack of knowledge from others [28]. Concretely, the government’s financial compensation for individuals who had a stroke was found to be insufficient for them to live fully. As a result, individuals had to limit their expenses, restricting their participation in social activities [28]. Standardized professional processes [28,41] also hindered the social participation of individuals aging with a neurological disability. Norlander et al. [41] reported that the current processes did not meet the rehabilitation needs of individuals who had a stroke. Additionally, the participants in this study reported a lack of information and guidance on how to manage the physical and cognitive difficulties resulting from their condition, leading them to avoid certain activities and withdraw from social situations.
Challenges related to public and adapted transport represented another significant barrier that restricted the social participation of individuals aging with neurological disabilities. Firstly, public and adapted transport services were found to be unreliable due to frequent delays [41,42]. As a result, participants did not use these services, limiting their participation in social roles and activities [41]. Participants’ dissatisfaction with these services, particularly the adapted transport, also resulted from strict policies and regulations. A qualitative study conducted by Remillard et al. [42] found that certain regulations, such as advance reservations and pre-scheduled pick-up times, discouraged participants from using the adapted services.
Finally, the social participation of individuals aging with a neurological disability was also negatively impacted by the lack of knowledge of others regarding their conditions. For example, Bergström et al. [28] found that, except for speech therapists and individuals living with aphasia, individuals often had a limited understanding of aphasia. This lack of knowledge could lead to misunderstandings, such as when an uninformed person mistakenly interprets the word-finding difficulties of a person with aphasia as a sign of confusion.
Physical factors. Eight studies investigated how the physical factors of the societal dimension influenced the social participation of individuals aging with neurological disabilities and found their impact to be negative (Table 3). Challenges came from the built environment [28,30,35,36,40,41] and geographical distance [45]. In regard to the built environment, obstacles on the sidewalks and the inaccessibility of shops restricted the participation of individuals living with mobility disability [30]. In Hoyle et al.’s study [36], one participant constantly wondered how he could quickly evacuate a building in case of an emergency, as his condition did not allow him to take the stairs. Norlander et al. [41] reported that stairs, uneven ground, or a lack of adapted parking restricted participants with walking difficulties from participating in meaningful activities. The presence of stairs and thresholds in public transport, such as subways or trains, was also identified to greatly limit the use of this service in Remillard et al.’s study [42]. As for geographical distance, due to the distance between her home and the swimming pool, a participant in Turcotte et al.’s study [45] had to give up this activity.

4. Discussion

This scoping review synthesized and integrated findings from 18 studies published since 2000 to better understand the factors that facilitate and hinder the social participation of individuals aging with long-term neurological disabilities. The selected studies suggest that this population’s social participation is influenced mainly by personal or environmental factors, with more barriers than facilitators. Concerning personal factors, fatigue, pain, mental health comorbidities, physical incapabilities, and the nature of the disability represent the main barriers, while good physical functions and motivation are the most frequently reported facilitators. Regarding environmental factors, while most barriers come from macro environments, i.e., societal dimensions, including built environments, government policies, as well as public and adapted transport services, the two prominent identified facilitators—a supportive social environment and adapted technological aids—come from micro-environments, i.e., personal dimensions.
At first glance, the numerous challenges identified in this current review could help explain the negative association between disability and social participation found in a recent study using seven waves of the Korean Longitudinal Study of Ageing [46]. Neurological disorders are the leading cause of nearly 50% of disabilities among individuals aged 65 and over [6]. Individuals living with long-term disabilities have been reported to experience more fatigue and daily pain [47], which considerably restricts their social participation [48,49]. These individuals also have to face unique challenges from both physical and social environments [30,50], leading to their withdrawal from social scenes. Together, these findings highlight this population’s social vulnerability.
At a deeper level, these findings raise questions on how to ensure health equity for individuals living and aging with disabilities. As advocated by the World Health Organization (WHO) [51], healthy aging is an inclusive process enabling everyone, regardless of their disability, to maintain their functional ability and fulfill their life. Since the built environment is a leading identified barrier to the social participation of individuals aging with neurological disabilities, followed by government policies and transportation services, more efforts should focus on accessible infrastructure and policy changes. Although the universal design has been promoted as the key to health equity and healthy aging [52,53], the adoption of this framework is still challenged by, among other things, regulatory complexities [54] and a lack of societal awareness [55,56]. Given this review’s findings on the negative impact of regulatory complexities regarding government support, including adapted transport services, it seems crucial to reform policies to support this demographic better.
In addition, raising awareness regarding neurological disabilities and fostering community support are crucial steps towards creating a more inclusive society where everyone can thrive. Having supportive environments like benevolent communities, where individuals feel welcomed, respected, and cared for [57], has been found to motivate individuals, especially those in vulnerable situations, to participate more actively in social activities [58], including demanding ones [59]. This supportive environment is essential for healthy aging among older adults [30,60] but also for individuals facing barriers related to their disability. However, to our surprise, facilitators, and barriers from community dimensions, i.e., meso-environments, are rarely reported in reviewed studies. A possible explanation for this is the lack of studies with a particular focus on community dimensions.
Another indicator of supportive environments is adapted activities conceived with the needs and challenges of individuals in vulnerable situations in mind [59]. For example, to foster the social participation of individuals living with neurological disabilities, activities designed for them should consider personal barriers such as fatigue and pain and the facilitator’s motivation. In fact, fatigue and pain management have been recommended as an integrated part of social participation interventions [61,62]. Simeon et al.’s quasi-experimental study [62] found that the positive effect of integrating fatigue management in group interventions on individuals’ social participation was sustained after three months post-treatment, implying its long-term effectiveness.

4.1. Practical Implications

The findings of this scoping review suggest several strategies that healthcare providers, community organizations, and political decision-makers could adopt to foster social participation among individuals living with neuro-disabilities. For example, healthcare providers and community organizations could develop integrated care pathways that explicitly target social participation as a health outcome. These initiatives should consider personalized participation plans that account for both the personal and environmental barriers (e.g., fatigue, pain, inaccessible built environment) and facilitators (e.g., ability to mobilize environmental resources, supportive social environment) identified in this review. For political decision-makers, this scoping review indicates the importance of reforming policies to better support this population. Concrete actions include promoting the accessibility of the built environment, addressing insufficient government funding, inequitable standardized professional processes, and strict policies and regulations related to adapted transport.

4.2. Future Studies

Given the lack of strong evidence on the impact of environmental factors from meso-environments, i.e., the community dimension, and their importance for healthy aging [63,64], future research should investigate the community factors that are favorable to the social participation of individuals aging with neurological disabilities and what should be improved. Community interventions are particularly promising since they can reach more individuals than individual-level initiatives. Another potential research avenue is to conduct a mixed study to better understand the obstacles and facilitators faced by individuals aging with long-term neurological disabilities. Most of the selected studies for this review were either of quantitative or qualitative design, which have their own pros and cons. A mixed study would help, on the one hand, sustain these two designs’ complementary benefits and, on the other hand, mitigate their defaults [65]. Concretely, such a study could start with a qualitative phase where individuals diagnosed with a neurological condition (e.g., stroke, trauma brain injury, multiple sclerosis, or spinal cord injury) are invited to share their daily realities. Their experiences could provide insights into what facilitates or hinders their participation in social roles and activities. Based on these insights, a cross-sectional quantitative study could further examine the link between personal and environmental factors and this population’s social participation on a larger scale. Findings from these two components will better inform policymakers and community actors on what can be improved to enhance the social participation of individuals aging with neurological disabilities, thereby promoting their healthy aging.

4.3. Strengths and Limitations

This scoping review presents several strengths and limitations. First, this scoping review relied on a rigorous and systematic approach established by the Joanna Briggs Institute [22], which ensures a structure for knowledge review. Additionally, the integration of the social participation concepts defined by Levasseur et al. [9] and the HDM—DCP [23] allowed for a complementary conceptual approach. Moreover, the involvement of experts in the research team, including a librarian specialized in rehabilitation sciences and a research professional (A.L.), strengthened the robustness of the methodological strategies, particularly in the development of research strategies and data extraction. Finally, the use of controlled keywords and multiple databases ensured a broader coverage of relevant studies on the research topic, exploiting their complementarities: MEDLINE, CINHAL, and EMBASE with a focus on biomedical sciences, and PsycINFO, which centered on social sciences.
Regarding this study’s limitations, the pragmatic decision to exclude articles published before 2000 may limit the integration of potentially relevant but earlier studies. This decision was, however, justified by the relatively recent emergence of the research topic. Furthermore, despite the rigor experienced during the selection of articles to include in the scoping review, the percentage of agreement between the examiners only reached the 75% threshold after several adjustments, indicating complexity in categorizing the studies. In addition, although no studies were excluded based on cultural, geographic, or ethnic reasons, the inclusion of articles published only in English and French may have led to the exclusion of relevant studies conducted in other cultural contexts. This language restriction represents a limitation of the review, as it may affect the comprehensiveness and cultural diversity of the included literature. Moreover, while studies were included regardless of the presence of comorbidities, provided that the primary focus was on long-term neurological disabilities, it is possible that the influence of co-existing conditions on social participation was variably addressed or reported across studies. In addition, similarly to other scoping reviews, no quality appraisal was carried out for the selected studies. These elements should be considered in the interpretation of the results and in the development of future research or interventions on the topic.

5. Conclusions

In examining the existing literature on facilitators and barriers to the social participation of individuals aging with neurological disabilities, this scoping review identified multiple personal and environmental factors that greatly influence these individuals’ participation or withdrawal in social roles and activities. The main barriers stemmed from built environments, government policies, and public and transport services, calling for more efforts to build accessible infrastructure and reform policies for better care for this aging population. Raising awareness of the challenges they have to face in daily life, as well as their health and social needs, could help inform policymakers and community actors, guiding their future decisions. Furthermore, the importance of building inclusive societies, characterized by supportive environments at the meso-level, and the lack of studies in this regard call for future research with this particular focus in mind. Research efforts in this field must continue to advance and support a more inclusive vision of aging and increase appropriate healthcare and services among individuals aging with a neurological disability. It is equally crucial to actively involve aging populations in both the design and operationalization of these studies. By mobilizing these individuals as key contributors, researchers can ensure that their perspectives, needs, and lived experiences are meaningfully integrated. This approach will not only enhance the relevance and impact of research but also promote a more equitable and participatory framework for addressing the challenges and opportunities associated with aging with a long-term neurological disability.

Author Contributions

Conceptualization, S.T.; Methodology, S.T. and A.L.; Software, S.K., G.B., L.G. and N.B.; Validation, A.L. and M.L. (Mia Lapointe); Formal Analysis, S.K., G.B., L.G. and N.B.; Data Curation, S.K., G.B., L.G. and N.B.; Writing—Original Draft Preparation, S.K., G.B., L.G., N.B. and S.T.; Writing—Review and Editing, P.S., M.V., M.L. (Mia Lapointe), M.L. (Mélanie Levasseur), A.L. and M.H.N.; Supervision, S.T. and A.L.; Project Administration, S.T. and A.L.; Funding Acquisition, S.T. All authors have read and agreed to the published version of the manuscript.

Funding

This research was funded by the Canadian Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research (SPOR-CIHR), Centre interdisciplinaire de recherche en réadaptation et intégration sociale du CIUSSS de la Capitale-Nationale.

Institutional Review Board Statement

Not available.

Informed Consent Statement

Not available.

Data Availability Statement

The data presented in this study are available upon request from the corresponding author.

Acknowledgments

The authors wish to thank T. H. Trang Nguyen for her meticulous revisions and insightful suggestions, which contributed to improving this manuscript.

Conflicts of Interest

The authors declare no conflicts of interest.

Appendix A

Table A1. Search strategy.
Table A1. Search strategy.
#QueryNumber of Results
1(((“Nervous system” or Neuro* or Brain) adj2 (Dis* or Impair* or Function* or Dysfunction* or Injur*)) or “Neuro* incapa*” or “Neuro* limit*” or “Head injur*” or “Multiple sclerosis” or Parkinson* or TBI* or Trauma* or Hemiplegi* or Paraplegi* or Tetraplegi* or Quadriplegi* or Myelopath* or Handicap* or Stroke* or “Cerebrovascular accident*” or Pares* or Hemipares* or Paralys* or “Spinal cord injur*”).ti,ab. 1,602,325
2Nervous system diseases/or exp Brain injuries/or Parkinson Disease/or exp Stroke/or exp Traumatic brain injuries/or exp Multiple sclerosis/or Spinal cord injuries/or Paraplegia/or Quadriplegia/or exp Craniocerebral trauma/or Paresis/or Paralysis/629,381
31 or 2 1,781,769
4((aged or old*) adj2 (person* or individuals* or adult* or citizen* or population or individual*)) or elder* or ageing or aging.ti,ab. 770,331
5aging/or aged/3,578,096
64 or 5 3,871,089
7((social or community or societ*) adj2 (participation or engag* or involv* or inte* or implicat* or reintegrat*)).ti,ab. 134,200
8social integration/or community involvement/18,725
97 or 8 149,452
103 and 6 and 9 2111
Note: This search strategy was employed in the MEDLINE database on 26 November 2023.
Table A2. Data extraction table.
Table A2. Data extraction table.
DoiAuthorArticle TitleYear of PublicationStudy LocationStudy PurposeStudy DesignStudy SampleData Collection MethodPrecise Methodology Conceptualization/Definition of Social ParticipationFacilitators and a Barriers to Social Participation
  • Sample
  • Sample size
  • Age range of samples
  • Average age of samples
  • Diagnoses
  • Severity of impairment
  • Time since diagnosis
  • Average time since diagnosis
  • Other relevant sociodemographic characteristics:
    • Marital status
    • Living situation
    • Urbanicity
    • Education
    • Annual income
    • Employment

References

  1. Sabri, S.M.; Annuar, N.; Rahman, N.L.A.; Musairah, S.K.; Mutalib, H.A.; Subagja, I.K. Major Trends in Ageing Population Research: A Bibliometric Analysis from 2001 to 2021. Proceedings 2022, 82, 19. [Google Scholar] [CrossRef]
  2. Ghneim, M.H.; Stein, D.M. Age-Related Disparities in Older Adults in Trauma. Surgery 2024, 176, 1771–1773. [Google Scholar] [CrossRef]
  3. Khan, H.T.A.; Addo, K.M.; Findlay, H. Public Health Challenges and Responses to Growing Ageing Populations. Public Health Chall. 2024, 3, e213. [Google Scholar] [CrossRef]
  4. Morris, C.; Janssens, A.; Tomlinson, R.; Williams, J.; Logan, S. Towards a Definition of Neurodisability: A Delphi Survey. Dev. Med. Child Neurol. 2013, 55, 1103–1108. [Google Scholar] [CrossRef]
  5. Lee, P.-H.; Yeh, T.-T.; Yen, H.-Y.; Hsu, W.-L.; Chiu, V.J.-Y.; Lee, S.-C. Impacts of Stroke and Cognitive Impairment on Activities of Daily Living in the Taiwan Longitudinal Study on Aging. Sci. Rep. 2021, 11, 12199. [Google Scholar] [CrossRef]
  6. Stancu, P.; Hentsch, L.; Seeck, M.; Zekry, D.; Graf, C.; Fleury, V.; Assal, F. Neurology of Aging: Adapting Neurology Provision for an Aging Population. Neurodegener. Dis. 2024, 14–20. [Google Scholar] [CrossRef]
  7. Pasin, T.; Karatekin, B.D. Determinants of Social Participation in Individuals living with Disability. PLoS ONE 2024, 19, e0303911. [Google Scholar] [CrossRef]
  8. Scher, C.; Amano, T.; Reynolds, A.; Jia, Y. Influences of Having Cognitive Impairment or Dementia on Social Engagement among Older Adults: A Systematic Review. Innov. Aging 2023, 7, 476. [Google Scholar] [CrossRef]
  9. Levasseur, M.; Lussier-Therrien, M.; Biron, M.L.; Raymond, É.; Castonguay, J.; Naud, D.; Fortier, M.; Sévigny, A.; Houde, S.; Tremblay, L. Scoping Study of Definitions of Social Participation: Update and Co-Construction of an Interdisciplinary Consensual Definition. Age Ageing 2022, 51, afab215. [Google Scholar] [CrossRef]
  10. Mikkelsen, A.S.B.; Petersen, S.; Dragsted, A.C.; Kristiansen, M. Social Interventions Targeting Social Relations among Older Individuals at Nursing Homes: A Qualitative Synthesized Systematic Review. Inq. J. Med. Care Organ. Provis. Financ. 2019, 56, 46958018823929. [Google Scholar] [CrossRef]
  11. Qing, Z.; Wu, C.; Gao, T. The Impact of Social Participation on Subjective Wellbeing in the Older Adult: The Mediating Role of Anxiety and the Moderating Role of Education. Front. Public Health 2024, 12, 1362268. [Google Scholar] [CrossRef]
  12. Reynolds, K.A.; Sommer, J.; Mackenzie, C.S.; Koven, L. A Profile of Social Participation in a Nationally Representative Sample of Canadian Older Adults: Findings from the Canadian Longitudinal Study on Aging. Can. J. Aging Rev. Can. Vieil. 2022, 41, 505–513. [Google Scholar] [CrossRef] [PubMed]
  13. Gervais, M.-J. Un défi pour nos interventions de promotion de la santé: Mieux rejoindre les personnes ainées en situation de vulnérabilité 2023. Available online: https://www.inspq.qc.ca/sites/default/files/2024-01/3440-interventions-promotion-sante-personnes-ainees-vulnerabilite.pdf (accessed on 9 March 2025).
  14. Wang, S.; Lin, J.; Kuang, L.; Yang, X.; Yu, B.; Cui, Y. Risk Factors for Social Isolation in Older Adults: A Systematic Review and Meta-Analysis. Public Health Nurs. 2024, 41, 200–208. [Google Scholar] [CrossRef]
  15. Wen, Z.; Peng, S.; Yang, L.; Wang, H.; Liao, X.; Liang, Q.; Zhang, X. Factors Associated with Social Isolation in Older Adults: A Systematic Review and Meta-Analysis. J. Am. Med. Dir. Assoc. 2023, 24, 322–330.e6. [Google Scholar] [CrossRef]
  16. Zhong, B.-L.; Chiu, H.F.-K. Ageism, Dementia, and Culture. Int. Psychogeriatr. 2023, 35, 1–2. [Google Scholar] [CrossRef] [PubMed]
  17. Turcotte, S.; Simard, P.; Levasseur, M.; Raymond, É.; Routhier, F.; Lamontagne, M.-È. Social Participation Experiences of Older Adults with an Early-Onset Physical Disability: A Systematic Review Protocol. JBI Evid. Synth. 2024, 22, 298. [Google Scholar] [CrossRef] [PubMed]
  18. Townsend, B.G.; Chen, J.T.-H.; Wuthrich, V.M. Barriers and Facilitators to Social Participation in Older Adults: A Systematic Literature Review. Clin. Gerontol. 2021, 44, 359–380. [Google Scholar] [CrossRef]
  19. Hilberink, S.R.; van der Slot, W.M.; Klem, M. Health and participation problems in older adults with long-term disability. Disabil. Health J. 2017, 10, 361–366. [Google Scholar] [CrossRef]
  20. Martin, J.J. Benefits and Barriers to Physical Activity for Individuals living with Disabilities: A Social-Relational Model of Disability Perspective. Disabil. Rehabil. 2013, 35, 2030–2037. [Google Scholar] [CrossRef]
  21. National Seniors Council. Who’s at Risk and What Can Be Done About It? A Review of the Literature on the Social Isolation of Different Groups of Seniors; National Seniors Council: Ottawa, ON, Canada, 2017. [Google Scholar]
  22. Peters, M.; Godfrey, C.; McInerney, P.; Munn, Z.; Tricco, A.; Khalil, H. Chapter 11: Scoping Reviews. In JBI Manual for Evidence Synthesis; JBI: Adelaide, Australia, 2020; ISBN 978-0-6488488-0-6. [Google Scholar]
  23. Fougeyrollas, P. Classification internationale ‘Modèle de développement humain—Processus de production du handicap’ (MDH—PPH, 2018). Kinésiethér. Rev. 2021, 21, 15–19. [Google Scholar] [CrossRef]
  24. Raymond, É.; Grenier, A.; Lacroix, N. La participation dans les politiques du vieillissement au Québec: Discours de mise à l’écart pour les aînés ayant des incapacités? Dév. Hum. Handicap Change Soc. Hum. Dev. Disabil. Soc. Change 2016, 22, 5–21. [Google Scholar] [CrossRef]
  25. Walsh, K.; Scharf, T.; Keating, N. Social Exclusion of Older Persons: A Scoping Review and Conceptual Framework. Eur. J. Ageing 2017, 14, 81–98. [Google Scholar] [CrossRef] [PubMed]
  26. WHO (Ed.) Global Age-Friendly Cities: A Guide; World Health Organization: Geneva, Switzerland, 2007; ISBN 978-92-4-154730-7. [Google Scholar]
  27. Tricco, A.C.; Lillie, E.; Zarin, W.; O’Brien, K.K.; Colquhoun, H.; Levac, D.; Moher, D.; Peters, M.D.J.; Horsley, T.; Weeks, L.; et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann. Intern. Med. 2018, 169, 467–473. [Google Scholar] [CrossRef] [PubMed]
  28. Bergström, A.; Guidetti, S.; Tham, K.; Eriksson, G. Association between Satisfaction and Participation in Everyday Occupations after Stroke. Scand. J. Occup. Ther. 2017, 24, 339–348. [Google Scholar] [CrossRef]
  29. Cattaneo, D.; Lamers, I.; Bertoni, R.; Feys, P.; Jonsdottir, J. Participation Restriction in Individuals living with Multiple Sclerosis: Prevalence and Correlations with Cognitive, Walking, Balance, and Upper Limb Impairments. Arch. Phys. Med. Rehabil. 2017, 98, 1308–1315. [Google Scholar] [CrossRef]
  30. Clarke, P.; Twardzik, E.; Meade, M.A.; Peterson, M.D.; Tate, D. Social Participation among Adults Aging with Long-Term Physical Disability: The Role of Socioenvironmental Factors. J. Aging Health 2019, 31, 145S–168S. [Google Scholar] [CrossRef]
  31. Dalemans, R.J.P.; de Witte, L.; Beurskens, A.J.H.M.; Van Den Heuvel, W.J.A.; Wade, D.T. An Investigation into the Social Participation of Stroke Survivors with Aphasia. Disabil. Rehabil. 2010, 32, 1678–1685. [Google Scholar] [CrossRef]
  32. Dalemans, R.J.P.; de Witte, L.; Wade, D.; van den Heuvel, W. Social Participation through the Eyes of Individuals living with Aphasia. Int. J. Lang. Commun. Disord. 2010, 45, 537–550. [Google Scholar] [CrossRef]
  33. D’Alisa, S.; Baudo, S.; Mauro, A.; Miscio, G. How Does Stroke Restrict Participation in Long-Term Post-Stroke Survivors? Acta Neurol. Scand. 2005, 112, 157–162. [Google Scholar] [CrossRef]
  34. Gingrich, N.; Bosancich, J.; Schmidt, J.; Sakakibara, B.M. Capability, Opportunity, Motivation, and Social Participation after Stroke. Top. Stroke Rehabil. 2023, 30, 423–435. [Google Scholar] [CrossRef]
  35. Howe, T.J.; Worrall, L.E.; Hickson, L.M.H. Interviews with Individuals living with Aphasia: Environmental Factors That Influence Their Community Participation. Aphasiology 2008, 22, 1092–1120. [Google Scholar] [CrossRef]
  36. Hoyle, M.; Gustafsson, L.; Meredith, P. Personal Factors, Participation, and Satisfaction Post-Stroke: A Qualitative Exploration. Scand. J. Occup. Ther. 2023, 30, 572–584. [Google Scholar] [CrossRef] [PubMed]
  37. Le Dorze, G.; Salois-Bellerose, É.; Alepins, M.; Croteau, C.; Hallé, M.-C. A Description of the Personal and Environmental Determinants of Participation Several Years Post-Stroke According to the Views of Individuals Who Have Aphasia. Aphasiology 2014, 28, 421–439. [Google Scholar] [CrossRef]
  38. Lundström, U.; Lilja, M.; Gray, D.; Isaksson, G. Experiences of Participation in Everyday Occupations among Persons Aging with a Tetraplegia. Disabil. Rehabil. 2015, 37, 951–957. [Google Scholar] [CrossRef] [PubMed]
  39. Lundström, U.; Wahman, K.; Seiger, Å.; Gray, D.B.; Isaksson, G.; Lilja, M. Participation in Activities and Secondary Health Complications among Persons Aging with Traumatic Spinal Cord Injury. Spinal Cord 2017, 55, 367–372. [Google Scholar] [CrossRef]
  40. Matérne, M.; Simpson, G.; Jarl, G.; Appelros, P.; Arvidsson-Lindvall, M. Contribution of Participation and Resilience to Quality of Life among Persons Living with Stroke in Sweden: A Qualitative Study. Int. J. Qual. Stud. Health Well-Being 2022, 17, 2119676. [Google Scholar] [CrossRef]
  41. Norlander, A.; Iwarsson, S.; Jönsson, A.-C.; Lindgren, A.; Månsson Lexell, E. Living and Ageing with Stroke: An Exploration of Conditions Influencing Participation in Social and Leisure Activities over 15 Years. Brain Inj. 2018, 32, 858–866. [Google Scholar] [CrossRef]
  42. Remillard, E.T.; Campbell, M.L.; Koon, L.M.; Rogers, W.A. Transportation Challenges for Persons Aging with Mobility Disability: Qualitative Insights and Policy Implications. Disabil. Health J. 2022, 15, 101209. [Google Scholar] [CrossRef]
  43. Savic, G.; Frankel, H.L.; Jamous, M.A.; Soni, B.M.; Charlifue, S. Participation Restriction and Assistance Needs in Individuals living with Spinal Cord Injuries of More than 40 Year Duration. Spinal Cord Ser. Cases 2018, 4, 1–7. [Google Scholar] [CrossRef]
  44. Sparling, A.; Stutts, L.A.; Sanner, H.; Eijkholt, M.M. In-Person and Online Social Participation and Emotional Health in Individuals living with Multiple Sclerosis. Qual. Life Res. 2017, 26, 3089–3097. [Google Scholar] [CrossRef]
  45. Turcotte, S.; Simard, P.; Piquer, O.; Lamontagne, M.-E. “I’m Aging Faster”: Social Participation as Experienced by Individuals Aging with a Traumatic Brain Injury. Brain Inj. 2022, 36, 1089–1098. [Google Scholar] [CrossRef] [PubMed]
  46. Kim, J.; Park, G.-R.; Namkung, E.H. The Link between Disability and Social Participation Revisited: Heterogeneity by Type of Social Participation and by Socioeconomic Status. Disabil. Health J. 2024, 17, 101543. [Google Scholar] [CrossRef] [PubMed]
  47. Stiles, T.C.; Hrozanova, M. Chapter 12—Chronic Pain and Fatigue. In Neuroscience of Pain, Stress, and Emotion; al’Absi, M., Flaten, M.A., Eds.; Academic Press: San Diego, CA, USA, 2016; pp. 253–282. ISBN 978-0-12-800538-5. [Google Scholar]
  48. Jain, D.; Bernstein, C.N.; Graff, L.A.; Patten, S.B.; Bolton, J.M.; Fisk, J.D.; Hitchon, C.; Marriott, J.J.; Marrie, R.A. Pain and Participation in Social Activities in Individuals living with Relapsing Remitting and Progressive Multiple Sclerosis. Mult. Scler. J.-Exp. Transl. Clin. 2023, 9, 20552173231188469. [Google Scholar] [CrossRef]
  49. Murphy, S.L.; Kratz, A.L.; Whibley, D.; Poole, J.L.; Khanna, D. Fatigue and Its Association with Social Participation, Functioning, and Quality of Life in Systemic Sclerosis. Arthritis Care Res. 2021, 73, 415–422. [Google Scholar] [CrossRef]
  50. Foley, C.; Kirkby, A.; Eccles, F.J.R. A Meta-Ethnographic Synthesis of the Experiences of Stigma amongst Individuals living with Functional Neurological Disorder. Disabil. Rehabil. 2024, 46, 1–12. [Google Scholar] [CrossRef]
  51. World Health Organization Decade of Healthy Ageing: Baseline Report; WHO: Geneva, Switzerland, 2020; p. 220.
  52. Carr, K.; Weir, P.L.; Azar, D.; Azar, N.R. Universal Design: A Step toward Successful Aging. J. Aging Res. 2013, 2013, 324624. [Google Scholar] [CrossRef] [PubMed]
  53. Dantas, C.; Louceiro, J.; Dias, L.; Moreira, A.; Kotradyová, V.; Čerešňová, Z.; Kacej, M.; Filová, N.; Šimková, M.; Sánchez, M.; et al. Design for All: An Overview of Needs and Gaps in Formal Education in Four European Countries. Interdiscip. Perspect. Built Environ. 2023, 3, 1–11. [Google Scholar] [CrossRef]
  54. Larkin, H.; Hitch, D.; Watchorn, V.; Ang, S. Working with Policy and Regulatory Factors to Implement Universal Design in the Built Environment: The Australian Experience. Int. J. Environ. Res. Public Health 2015, 12, 8157–8171. [Google Scholar] [CrossRef]
  55. Ielegems, E.; Herssens, J.; Nuyts, E.; Vanrie, J. Drivers and Barriers for Universal Designing: A Survey on Architects’ Perceptions. J. Archit. Plan. Res. 2019, 36, 181–197. [Google Scholar]
  56. Müller, L. Who Are We Building for? Tracing Universal Design in Urban Development. Des. Incl. 2023, 303, 3–9. [Google Scholar] [CrossRef]
  57. Nguyen, T.H.T.; Levasseur, M. How Does Community-Based Housing Foster Social Participation in Older Adults: Importance of Well-Designed Common Space, Proximity to Resources, Flexible Rules and Policies, and Benevolent Communities. J. Gerontol. Soc. Work 2023, 66, 103–133. [Google Scholar] [CrossRef] [PubMed]
  58. Sixsmith, J.; Makita, M.; Menezes, D.; Cranwell, M.; Chau, I.; Smith, M.; Levy, S.; Scrutton, P.; Fang, M.L. Enhancing Community Participation through Age-Friendly Ecosystems: A Rapid Realist Review. Geriatrics 2023, 8, 52. [Google Scholar] [CrossRef] [PubMed]
  59. Levasseur, M.; Dezutter, O.; Nguyen, T.H.T.; Babin, J.; Bier, N.; Biron, M.L. Influence of Reading or Writing Activities Shared with Others on Older Adults: Results from a Scoping Study. J. Appl. Gerontol. 2024, 44, 298–311. [Google Scholar] [CrossRef] [PubMed]
  60. Baeriswyl, M.; Oris, M. Social participation and life satisfaction among older adults: Diversity of practices and social inequality in Switzerland. Ageing Soc. 2021, 43, 1–25. [Google Scholar] [CrossRef]
  61. Shahrbanian, S.; Duquette, P.; Ahmed, S.; Mayo, N.E. Pain Acts through Fatigue to Affect Participation in Individuals living with Multiple Sclerosis. Qual. Life Res. 2016, 25, 477–491. [Google Scholar] [CrossRef]
  62. Simeon, R.; Galeoto, G.; Valente, D.; Conte, A.; Ferrazzano, G.; Leodori, G.; Berardi, A. Fatigue Management Effects on Social Participation and Environment Management in Individuals living with Multiple Sclerosis: Quasi-Experimental Study. Br. J. Occup. Ther. 2024, 88, 93–104. [Google Scholar] [CrossRef]
  63. Greenfield, E.A. Healthy Aging and Age-Friendly Community Initiatives. Public Policy Aging Rep. 2015, 25, 43–46. [Google Scholar] [CrossRef]
  64. Greenfield, E.A.; Black, K.; Buffel, T.; Yeh, J. Community Gerontology: A Framework for Research, Policy, and Practice on Communities and Aging. Gerontologist 2019, 59, 803–810. [Google Scholar] [CrossRef]
  65. Corbière, M.; Larivière, N. (Eds.) Méthodes Qualitatives, Quantitatives et Mixtes: Dans La Recherche En Sciences Humaines, Sociales et de La Santé, 2nd ed.; Presses de l’Université du Québec: Québec, QC, Canada, 2020; ISBN 978-2-7605-5139-8. [Google Scholar]
Figure 1. PRISMA flowchart.
Figure 1. PRISMA flowchart.
Disabilities 05 00049 g001
Table 1. Inclusion criteria for the scoping review.
Table 1. Inclusion criteria for the scoping review.
Inclusion Criteria
Participants with an average age of at least 50 years
Participants living with a disability for an average duration of at least 5 years
Studies addressing long-term neurological disabilities resulting from a disorder or event
Peer-reviewed primary literature
Studies published in English and/or French
Studies published since 2000
Studies were included regardless of the presence of comorbidities, provided that the primary focus was on long-term neurological disabilities and social participation
Table 2. Characteristics of the selected studies (N = 18).
Table 2. Characteristics of the selected studies (N = 18).
Reference NumberAuthors (Year)
Study Location
Study DesignStudy PurposeSample Characteristics
[28]Bergström et al. (2017)
Sweden
Cohort study (quantitative)Explore and describe the relationship between satisfaction and participation in daily occupations within a Swedish cohort, 5 years post-stroke.Sample size: N = 69
Diagnostic: stroke
Mean age: 67 years
Average time since diagnosis: 5 years
[29]Cattaneo et al. (2017)
USA
Cross-sectional study (quantitative)Estimate the prevalence of participation restrictions in multiple sclerosis according to the level of disability.
Evaluate the relationship between participation restrictions, activity limitations, and cognitive deficits.
Sample size: N = 98
Diagnostic: multiple sclerosis
Mean age: 53.4 years
Average time since diagnosis: 18.2 years
[30]Clarke et al. (2019)
USA
Longitudinal study (quantitative)Examine the environmental barriers and facilitators that hinder or promote participation among adults aging with physical disabilities.Sample size: N = 1331
Diagnostic: multiple sclerosis (32%); muscular dystrophy (19%); spinal cord injury (23%); post-polio syndrome (26%)
Mean age: 64.5 years
Average time since diagnosis: 34.6 years
[31]Dalemans et al. (2010)
UK
Cross-sectional study (quantitative)Describe the social participation of individuals living with aphasia.
Study the factors related to their level of social participation.
Sample size: N = 150
Diagnostic: stroke
Mean age: 64.2 years
Average time since diagnosis: 7.6 years
[32]Dalemans et al. (2010)
The Netherlands
Not specified (qualitative)Explore how individuals living with aphasia perceive their participation in society.
Investigate the factors influencing this participation.
Sample size: N = 13
Diagnostic: aphasia post-stroke
Mean age: 57.4 years
Average time since diagnosis: 5.1 years
[33]D’Alisa et al. (2005)
Italy
Not specified (quantitative)Explore the factors determining “restricted participation”, as measured by the London Handicap Scale, in a selected population of individuals who had a stroke at different times after stroke onset, including very long-term including individuals who had a stroke a long time ago.Sample size: N = 73
Diagnostic: stroke
Mean age: 62.6 years
Average time since diagnosis: 5 years
[34]Gingrich et al. (2023)
Canada
Cross-sectional study (quantitative)Develop an understanding of social participation in individuals who had a stroke using the Behavior Change Wheel model as a guiding theoretical framework.Sample size: N = 30
Diagnostic: stroke
Mean age: 62.8 years
Average time since diagnosis: 9.7 years
[35]Howe et al. (2008)
Australia
Exploratory descriptive study (qualitative)Explore the environmental factors that hinder or support the community participation of adults living with aphasia to develop a valid and reliable environmental factor measurement instrument.Sample size: N = 25
Diagnostic: aphasia post-stroke
Mean age: 62.2 years
Average time since diagnosis: 5.6 years
[36]Hoyle et al. (2023)
Australia
Exploratory phenomenological study (qualitative)Explore how personal factors influence the experiences of participation and satisfaction for individuals who had a stroke living in the community.Sample size: N = 8
Diagnostic: stroke
Mean age: 60.5 years
Average time since diagnosis: 9.1 years
[37]Le Dorze et al. (2014)
Canada
Not specified (qualitative)Explore the factors that facilitate or hinder participation according to individuals living with aphasia.Sample size: N = 17
Diagnostic: stroke
Mean age: 65.7 years
Average time since diagnosis: 5.7 years
[38]Lundström et al. (2015)
UK
Not specified (qualitative)Gain an understanding of participation in everyday occupations through the life stories of individuals aging with a traumatic spinal cord injury.Sample size: N = 8
Diagnostic: traumatic spinal cord injury
Mean age: 57.6 years
Average time since diagnosis: 27.1 years
[39] Lundström et al. (2017)
Sweden
Cross-sectional cohort study (quantitative) Describe participation in activities and explore correlations with side effects in individuals aging with a spinal cord injury. Sample size: N = 73
Diagnostic: traumatic spinal cord injury
Mean age: 63.7 years
Average time since diagnosis: 36.3 years
[40] Matérne et al. (2022)
Sweden
Cross-sectional study (qualitative) Explore the experience contributing to participation and resilience to quality of life among individuals who have had a stroke in Sweden. Sample size: N = 19
Diagnostic: stroke
Mean age: 62.9 years
Average time since diagnosis: 6.3 years
[41] Norlander et al. (2010)
Sweden
Grounded theory (qualitative) Explore conditions influencing long-term participation in social and leisure activities in individuals who had a stroke 15 years ago. Sample size: N = 10
Diagnostic: stroke
Mean age: 72 years
Average time since diagnosis: 15 years
[42] Remillard et al. (2022)
USA
Not specified (qualitative) Understand potential policy gaps related to the personal experiences of individuals aging with a mobility disability and the transportation policies and initiatives designed to support this population in the USA. Sample size: N = 60
Diagnostic: post-polio syndrome (50%); neurological condition (e.g., MS, cerebral palsy) (18%); accident or event (23%); congenital condition or anomaly (e.g., spina bifida) (7%); other (e.g., adverse drug reaction) (2%)
Mean age: 69 years
Average time since diagnosis: 19 years
[43] Savic et al. (2018)
UK
Prospective observational cohort study (mixed) Examine changes in participation levels over a 20-year study period in a cohort of individuals aging with a spinal cord injury and identify potential predictors requiring increased assistance. Sample size: N = 85
Diagnostic: spinal cord injury
Mean age: 67.7 years
Average time since diagnosis: 46.3 years
[44] Sparling et al. (2017)
USA
Not specified (quantitative) Assess the role of access to resources and other determinants in enabling in-person and online social participation.
Analyze the association between social participation and the emotional health of individuals living with multiple sclerosis.
Sample size: N = 508
Diagnostic: multiple sclerosis
Mean age: 59.2 years
Average time since diagnosis: 20.3 years
[45] Turcotte et al. (2022)
Canada
Exploratory descriptive study (qualitative) Gain an insight into the experiences of aging with a traumatic brain injury.
Explore promising intervention avenues for social participation in this population.
Sample size: N = 10
Diagnostic: traumatic brain injury
Mean age: 64.9 years
Average time since diagnosis: 24.3 years
Table 3. Facilitators, barriers, and factors with mixed influence for the social participation of individuals aging with long-term neurological disabilities.
Table 3. Facilitators, barriers, and factors with mixed influence for the social participation of individuals aging with long-term neurological disabilities.
Factors ArticlesNumber of Articles
1. Personal factors
   1.1. Identity factors
   1.1.1. Sociodemographic factors
     1.1.1.1. Younger age(+)Dalemans et al. [31]1
     1.1.1.2. Older age(-)Clarke et al. [30]
Hoyle et al. [36]
2
     1.1.1.3. Identifying as a woman(+)Dalemans et al. [31]1
     1.1.1.4. More years since diagnosis(+)Clarke et al. [30]2
(0)Dalemans et al. [32]
     1.1.1.5. Never married(+)Clarke et al. [30]1
     1.1.1.6. Higher education(+)Clarke et al. [30]1
     1.1.1.7. Low household income(-)Norlander et al. [41]1
   1.1.2. Personality traits
     1.1.2.1. Being sociable(+)Le Dorze et al. [37]
Norlander et al. [41]
2
     1.1.2.2. Being perseverant(+)Hoyle et al. [36]
Le Dorze et al. [37]
2
     1.1.2.3. Being introvert(-)Sparling et al. [44]2
(?)Norlander et al. [41]
   1.1.3. Attitudes
     1.1.3.1. Being positive(+)Le Dorze et al. [37]
Norlander et al. [41]
2
     1.1.3.2. Being motivated(+)Dalemans et al. [34]
Le Dorze et al. [37]
Norlander et al. [41]
4
     1.1.3.3. Being negative(-)Norlander et al. [41]1
     1.1.3.4. Avoiding certain activities(-)Norlander et al. (2018) [41]1
     1.1.3.5. Lacking a sense of belonging(-)Dalemans et al. [31]1
     1.1.3.6. Feelings of fear(-)Hoyle et al. [36]1
     1.1.3.7. Being insecure(-)Norlander et al. [41]1
   1.1.4. Life course
     1.1.4.1. Activities matching interests(+)Turcotte et al. [45]1
     1.1.4.2. Activities matching individuals’ life stories(+)Turcotte et al. [45]1
   1.1.5. Acceptance and adaptation to disability
     1.1.5.1. Acceptance of the condition(+)Norlander et al. [41]1
     1.1.5.2. Not accepting one’s condition(-)Norlander et al. [41]1
     1.1.5.3. Adaptation to disabilities(+)Norlander et al. [41]1
     1.1.5.4. Use of effective adaptive strategies(+)Hoyle et al. [36]1
   1.2. Organic system
   1.2.1. Diagnostic conditions
     1.2.1.1. Nature of disability(-)Clarke et al. [30]
Dalemans et al. [31]
Matérne et al. [40]
3
   1.2.2. Mental health comorbidities(-)D’Alisa et al. [33]
Matérne et al. [40]
Norlander et al. [41]
Sparling et al. [44]
4
   1.2.3. Physical dimension
     1.2.3.1. Good physical functions(+)Clarke et al. [30]
Dalemans et al. [32]
Turcotte et al. [45]
3
     1.2.3.2. Physical disabilities(-)D’Alisa et al. [33]
Remillard et al. [42]
Savic et al. [43]
4
(0)Gingrich et al. [34]
     1.2.3.3. Pain(-)Clarke et al. [30]
Norlander et al. [41]
Lundström et al. [38,39]
4
     1.2.3.4. Fatigue(-)Clarke et al. [30]
Dalemans et al. [32]
Matérne et al. [40]
Norlander et al. [41]
Lundström et al. [38,39]
6
     1.2.3.5. Sleep problems(-)Lundström et al. [38]1
     1.2.3.6. Spasticity(-)Lundström et al. [39]1
     1.2.3.7. Muscle weakness(-)Lundström et al. [38,39]2
     1.2.3.8. Reduced reflexes(-)Remillard et al. [42]1
     1.2.3.9. Reduced dexterity(-)Remillard et al. [42]1
     1.2.3.10. Dizziness(-)Matérne et al. [40]1
   1.2.4. Cognitive dimension
     1.2.4.1. Cognitive disabilities(-)Cattaneo et al. [29]
Norlander et al. [41]
Matérne et al. [40]
3
     1.2.4.2. Concentration problems(-)Dalemans et al. [32]1
     1.2.4.3. Memory problems(-)Dalemans et al. [32]1
   1.3. Capability
   1.3.1. Ability to mobilize environmental resources(+)Turcotte et al. [45]
Le Dorze et al. [37]
2
   1.3.2. Intellectual activities
     1.3.2.1. Adequate knowledge of the condition(+)Norlander et al. [41]1
     1.3.2.2. Problem-solving skills(+)Norlander et al. [41]
Le Dorze et al. [37]
1
     1.3.2.3. Planning skills(+)Hoyle et al. [36]2
(-)Remillard et al. [42]
   1.3.3. Motor skills
     1.3.3.1. Lack of coordination(-)Norlander et al. [41]1
     1.3.3.2. Loss of balance(-)Cattaneo et al. [29]
Dalemans et al. [32]
Matérne et al. [40]
3
2. Environmental factors
   2.1. Micro-environments, i.e., personal dimension
   2.1.1. Social factors
     2.1.1.1. Supportive social environment(+)Bergström et al. [28]
Clarke et al. [30]
Hoyle et al. [36]
Le Dorze et al. [37]
Matérne et al. [40]
Norlander et al. [41]
6
   2.1.2. Physical factors
     2.1.2.1. Adapted technological aids(+)Clarke et al. [30]
Norlander et al. [41]
Lundström et al. [38,39]
4
     2.1.2.2. Physical barriers to the use of technological aids(-)Matérne et al. [40]1
   2.2. Meso-environments, i.e., community dimension
   2.2.1. Social factors
     2.2.1.1. Accessibility to meaningful community activities(+)Norlander et al. [41]1
     2.2.1.2. Familiar environment(+)Bergström et al. [28]1
     2.2.1.3. Fast-paced community activities(-)Turcotte et al. [45]1
     2.2.1.4. Inaccessible procedures(-)Bergström et al. [28]1
     2.2.1.5. Discriminatory attitude(-)Bergström et al. [28]1
     2.2.1.6. Activity costs(-)Turcotte et al. [45]1
   2.2.2. Physical factors
     2.2.2.1. Accessible environment(+)Norlander et al. [41]1
     2.2.2.2. Quiet settings(+)Dalemans et al. [32]
Howe et al. [35]
2
     2.2.2.3. Opportunities to participate(+)Gingrich et al. [34]1
     2.2.2.4. Winter(-)Turcotte et al. [45]1
     2.2.2.5. Noisy environment(-)Howe et al. [35]1
     2.2.2.6. Visually cluttered environments(-)Howe et al. [35]1
   2.3. Macro environments, i.e., societal dimension
   2.3.1. Social factors
     2.3.1.1. Financial and practical government support(+)Bergström et al. [28]
Matérne et al. [40]
2
     2.3.1.2. Insufficient government funding(-)Bergström et al. [28]
Matérne et al. [40]
Remillard et al. [42]
3
     2.3.1.3. Inequitable standardized professional processes(-)Bergström et al. [28]
Norlander et al. [41]
2
     2.3.1.4. Unreliability of public and adapted transport services(-)Norlander et al. [41]
Remillard et al. [42]
2
     2.3.1.5. Strict policies and regulations related to adapted transport(-)Remillard et al. [42]1
     2.3.1.6. Lack of knowledge from others(-)Bergström et al. [28]1
   2.3.2. Physical factors
     2.3.2.1. Built environment(-)Bergström et al. [28]
Clarke et al. [30]
Howe et al. [35,36]
Matérne et al. [40]
Norlander et al. [41]
Remillard et al. [42]
7
     2.3.2.2. Geographical distance(-)Turcotte et al. [45]1
Legend: (+) Facilitator, i.e., factors reported to facilitate and support participants’ social participation. (-) Barrier, i.e., factors reported to limit or hinder participants’ social participation. (0) No influence, i.e., factors reported to show no influence on participants’ social participation. (?) Unclear influencing direction, i.e., factors reported to influence participants’ social participation without precision if the influence is positive or negative.
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content.

Share and Cite

MDPI and ACS Style

Turcotte, S.; Kheroua, S.; Brun, G.; Gagnon, L.; Bustamante, N.; Labbé, A.; Simard, P.; Veilleux, M.; Lapointe, M.; Nguyen, M.H.; et al. Barriers and Facilitators to the Social Participation of Individuals Aging with a Long-Term Neurological Disability: A Scoping Review. Disabilities 2025, 5, 49. https://doi.org/10.3390/disabilities5020049

AMA Style

Turcotte S, Kheroua S, Brun G, Gagnon L, Bustamante N, Labbé A, Simard P, Veilleux M, Lapointe M, Nguyen MH, et al. Barriers and Facilitators to the Social Participation of Individuals Aging with a Long-Term Neurological Disability: A Scoping Review. Disabilities. 2025; 5(2):49. https://doi.org/10.3390/disabilities5020049

Chicago/Turabian Style

Turcotte, Samuel, Sirine Kheroua, Gloria Brun, Laura Gagnon, Nora Bustamante, Angéline Labbé, Pascale Simard, Megan Veilleux, Mia Lapointe, Manh Hung Nguyen, and et al. 2025. "Barriers and Facilitators to the Social Participation of Individuals Aging with a Long-Term Neurological Disability: A Scoping Review" Disabilities 5, no. 2: 49. https://doi.org/10.3390/disabilities5020049

APA Style

Turcotte, S., Kheroua, S., Brun, G., Gagnon, L., Bustamante, N., Labbé, A., Simard, P., Veilleux, M., Lapointe, M., Nguyen, M. H., & Levasseur, M. (2025). Barriers and Facilitators to the Social Participation of Individuals Aging with a Long-Term Neurological Disability: A Scoping Review. Disabilities, 5(2), 49. https://doi.org/10.3390/disabilities5020049

Article Metrics

Back to TopTop