Participation and Its Association With Health Among Community-Dwelling Adults With Chronic Stroke

A growing body of research suggests that participation remains problematic for people with stroke, even long after stroke onset. Studies have found that people living with stroke experience restrictions in work and education, social participation, relationship quality, autonomy, community activities, and occupational engagement (Hartman-Maeir et al., 2007; Mayo et al., 2014; Mwaka-Rutare et al., 2020,; Palstam et al., 2019). Yet, meaningful participation and control over participation have been identified as high-priority outcomes by people with stroke (Hammel et al., 2008; Morris et al., 2015). Understanding the degree of restrictions experienced is critical to inform occupational therapy research and practice.

Poor participation among people with stroke has potential implications for health. Evidence suggests that there may be an important link between participation, particularly social participation, and physical, cognitive, and mental health outcomes (Evans et al., 2019; Hooker et al., 2019; Valtorta et al., 2016). The degree to which people are active and engaged in their communities and social networks may be associated with health, well-being, and quality of life. Despite this growing evidence, few studies have examined this relationship among people with chronic stroke, who are at high risk for poor health outcomes. More research is needed to better understand the relationships between participation and health in this population.

The ability to examine the severity and prevalence of participation restrictions—and the association between participation and health—has been limited by measurement challenges. Quantitative measures of participation have been difficult to interpret because of limited psychometric properties of these measures, including established norms and clinically meaningful cutpoints. Two measures with established psychometric properties facilitating interpretation include the Activity Card Sort (ACS; Edwards et al., 2006) and the Enfranchisement Scale of the Community Participation Indicators (hereafter, Enfranchisement Scale; Hammel et al., 2008, Heinemann et al., 2013). The ACS identifies the percentage of prestroke meaningful activities that people have given up or retained since their stroke. The Enfranchisement Scale assesses the sense of inclusion and belonging, feeling valued by and contributing to the community, and having choice and control over participation. Previously published norms on the ACS (Edwards et al., 2006), along with research establishing cutpoints for the Enfranchisement Scale (Kersey et al., 2022), provide guidance for interpretation of results of these measures. Together, these measures provide a more detailed picture of participation: whether people do the activities they want to do and how they feel about their participation.

Using the established norms and cutpoints, we examined the severity of participation restrictions among people with stroke-related disability. We also further explored the association between participation and health. In this secondary analysis of baseline data from a community-based intervention study, we aimed to (1) describe participation among community-dwelling people with stroke and (2) examine associations between participation and health.

In the parent multisite intervention study (University of Pittsburgh Institutional Review Board No. 20110335), we recruited community-dwelling people with stroke from Pittsburgh (n = 22) and St. Louis (n = 17). Participants were eligible if they (1) were age 18 yr or older, (2) experienced their stroke ≥3 mo before enrollment, (3) lived in a community setting, (4) experienced mild–moderate stroke-related disability (modified Rankin Scale ≤3; Rankin, 1957), and (5) were able to provide informed consent. Participants were excluded if they (1) were receiving current rehabilitation services; (2) had a diagnosis of dementia; (3) had severe aphasia (Boston Diagnostic Aphasia Examination score of 0 or 1; Borod et al., 1980); (4) had a diagnosis of major depressive disorder, unless released to participate by physician or counselor; (5) had a current diagnosis of bipolar or psychotic disorder; or (6) reported active substance abuse within the prior 3 mo. All participants provided informed consent to participate in the parent study.

We measured participation using the ACS 55-item checklist and the Community Participation Indicators–Enfranchisement Scale. The ACS is an assessment examining activities that people have retained since the onset of their stroke (Edwards et al., 2006). A percentage of activities retained below 80% indicates a meaningful decrease in participation. The ACS was used as a screening assessment in the parent study, and all participants (regardless of eligibility) completed it (n = 39). The Enfranchisement Scale has two subscales: Control and Importance (Heinemann et al., 2013). Lower scores indicate greater participation. A score on the Control subscale of ≥44 and a score on the Importance subscale of ≥39 indicate poor participation (Kersey et al., 2023). Health was measured with the PROMIS^®–29 (Hays et al., 2018) Physical Health and Mental Health summary scores (T scores). The Enfranchisement Scale and the PROMIS Physical Health and Mental Health measures were administered only to those who were eligible for participation in the parent study (n = 31).

In this study, we used data from screening and baseline assessments in the parent study. To describe participation in this sample, we calculated descriptive statistics of the ACS and both subscales of the Enfranchisement Scale; we then compared results with the cutpoints for each measure. All participants who were screened for eligibility were included in this portion of the analysis. Because data were not normally distributed, we calculated medians and interquartile ranges (IQRs). To examine the association between participation and health, we calculated Spearman’s ρ correlations between each participation measure and the Physical Health and Mental Health summary scores of the PROMIS–29. Only participants who were eligible for the parent study have complete health and Enfranchisement Scale data; therefore, only parent-study eligible participants were included in this portion of the analysis.

In the parent study, 39 participants were screened for eligibility, and 31 were included. Demographic and clinical characteristics of the 31 eligible participants are reported in Table 1. Overall, the sample was diverse in terms of race (41.9% Black) and education (41.9% received less than a bachelor’s degree). All participants had chronic stroke, with a mean of 4.5 yr (SD = 5.3, range = 0–24 yr) since stroke onset.

Table 2 reports participation outcomes for this sample. Participants gave up many activities since their stroke, with a median of <50% of activities retained since stroke onset (IQR = 34.2). All but 2 of 39 participants (94.9%) retained <80% of their prestroke activities. The Enfranchisement Scale was also poor, with medians worse than the cutpoints for both subscales (Control: Mdn = 53.0, IQR = 15.0; Importance: Mdn = 44.0, IQR = 17.0). Nearly two-thirds of the sample scored worse than the cutpoints.

Table 3 reports health outcomes for the sample. Mental health was better than physical health in this sample, but mental health had a wide distribution; moreover, 8 of 31 participants (25.8%) reported no emotional distress. Table 4 reports the associations between participation and health. Physical health was moderately associated with Enfranchisement Scale–Importance (feeling valued by and contributing to the community; ρ = .46), whereas mental health was moderately associated with all participation measures (ρ = .42–.63). The strongest association was between mental health and Enfranchisement Scale–Control (ρ = .63).

Participation outcomes in this community-based sample of adults with stroke were poor, despite having completed usual rehabilitation services. Not only were participants in this study doing fewer meaningful activities because of their stroke but they also indicated a lack of enfranchisement, or inclusion in their communities. Our study aligns with previous findings that people with stroke have lower rates of engagement in meaningful activities (Hartman-Maeir et al., 2007; Mayo et al., 2014; Mwaka-Rutare et al., 2020 ; Palstam et al., 2019); it also further illustrates the severity of this disengagement. It is startling that nearly the entire sample had a meaningful decline in their activities that had not been addressed through rehabilitation. Moreover, our study highlights the lack of inclusion and belonging perceived by people with stroke. Participants reported lacking a sense of choice and control over participation, not feeling valued by their community, and not contributing to their community. Together, these results illustrate that, despite having received usual medical and rehabilitation care, people with chronic stroke lack full and meaningful community participation.

These striking participation outcomes suggest the need for stronger community rehabilitation, health services, and community supports to enhance outcomes. People with chronic stroke are generally older adults and are more likely than the general population to have multiple comorbidities and depressive symptoms. These factors, associated with poor participation and health, compound the already higher risk for poor outcomes (Chau et al., 2009; Desrosiers et al., 2006). Thus, people with chronic stroke require greater community support to manage these risks and to improve outcomes. It appears that current services are both underused and inadequate for this population. Studies have shown that few people with stroke use rehabilitation services within 10 yr of their stroke; moreover, those who do are more likely to use rehabilitation services only after having a recurrent stroke (Keptner et al., 2019; Obembe et al., 2018).

Although the reasons for low utilization are unclear, possible reasons include few options for services, lack of accessibility (financial, cognitive, or physical), and competing health service needs. Moreover, even when services are used, they clearly do not meet the participation needs of people with stroke. Occupational therapy practice most frequently emphasizes self-care and mobility training (Richards et al., 2005; Smallfield & Karges, 2009) rather than community participation. There is a critical need for community-based interventions that address community goals, management of environmental factors, social support needs, and self-management skills in an effort to improve sense of control, self-efficacy, and participation. Finally, there is a need for ongoing rehabilitation services throughout the chronic phase of stroke recovery to enhance long-term participation outcomes.

We found modest correlations between participation and physical health, and moderate correlations between participation and mental health. In particular, mental health was closely associated with the Control subscale of the Enfranchisement Scale. This finding suggests that having choice in what to do, when, and with whom are aspects of participation that have implications for mental health. This outcome aligns with previous research suggesting an association between participation and mental health in other populations (Hooker et al., 2019; Kersey et al., 2022). Studies conducted with older adults also suggest that interventions targeting participation may lead to improved mental health and overall self-reported health (Anderson et al., 2014; Coll-Planas et al., 2017); there is reason to believe that participation interventions for people with stroke may achieve the same improvements in health. Considering that people with chronic stroke are already at risk for poor health outcomes, this relationship warrants additional research to better understand the nature and directionality of this relationship and whether participation intervention may facilitate better health outcomes among people with stroke.

Although promising, this pilot study has limitations with respect to generalizability. First, in the parent study, people were recruited who wanted to improve their participation. Thus, study findings may be skewed toward those with more severe participation restrictions than those among the general population of people with stroke. That said, this sample may be representative of those likely to seek community rehabilitation services, and understanding their needs is crucial. However, in the parent study, people with depression, substance abuse, or aphasia were not included, potentially excluding people who may experience even more severe participation restrictions. This limitation may reduce the generalizability of study findings to people with these conditions. It is important to note that our results are similar to those reported in other studies. Finally, because this study had a small sample size and was limited to a cross-sectional examination, we are unable to determine the directionality of the relationship between participation and health and whether this changes over time. Larger longitudinal studies are needed to further explore these research questions.

This report has the following implications for occupational therapy practice:

• ▪ Nearly the entire sample of adults with chronic stroke had restrictions in community participation, and many had severe restrictions. This suggests a greater need for long-term rehabilitation services focused on enhancing participation.

• ▪ Participation was modestly associated with physical health and moderately associated with mental health, suggesting important health impacts of participation restrictions and an urgent need to ensure that participation is addressed in rehabilitation services.

We found that participation was poor among community-dwelling adults with chronic stroke and that participation was modestly associated with physical health and moderately associated with mental health. These results suggest the need for stronger community-based, long-term rehabilitation, health services, and community supports for people with chronic stroke. The time is ripe to further develop community-based, participation-focused rehabilitation interventions to improve long-term outcomes for adults with stroke.

This study was funded by the Clinical and Translational Science Award and Sharing Partnership for Innovative Research in Translation (Ul1 TR001857, UL1 TR002345) and National Institute of Disability, Independent Living and Rehabilitation Research (90RE5018).