Factors affecting ability and satisfaction with social roles in persons with neurological conditions: The importance of mobility and stigma

Abstract

Introduction

The accomplishment of social roles and the satisfaction derived from participating in social roles are two important concepts in occupational therapy. Despite their importance, not much is known about how the two concepts differ. The objective of this study was to explore and compare the clinical and environmental factors correlated with accomplishment and satisfaction in social roles.

Method

This secondary analysis used data from a nested mixed method study. Participants (n = 88) were Canadian adults, living with a range of neurological conditions. Linear regression analysis was used to identify factors that significantly affected the accomplishment and satisfaction of five social role domains (responsibility, interpersonal relationships, community life, employment and recreation).

Results

The variable of mobility was significantly associated with accomplishment of all five social role domains. Stigma, however, surfaced as the most important variable for satisfaction with social roles. It was significantly associated with all social role domains except employment.

Conclusion

From this analysis it appears that social role accomplishment and satisfaction have distinct correlates. Stigma is an important correlate of social role satisfaction that needs to be understood in more depth and addressed by occupational therapists so individuals with neurological conditions can maximize their satisfaction with social participation.

Keywords

Social participation participation satisfaction stigma mobility neurological conditions accomplishment

Introduction

Collectively, neurological conditions are a significant cause of disease burden and are characterized by diverse functional limitations (Gaskin et al., 2017; Lim et al., 2012). They are among the leading causes of disability, because many conditions have no cure and worsen over time (Tator et al., 2007). Functional limitations can pose significant challenges to participation in social activities and roles; however, functional limitations are not the only factors believed to influence participation. Environmental and societal factors also have an impact (Woodman et al., 2014), although how these factors differentially affect participation in social activities remains unclear.

Social participation can be defined as participation in social and societal activities (Piškur et al., 2013) that involve interacting with the environment while engaging with others (Fougeyrollas et al., 1998). In older adults, this engagement is positively correlated with quality of life (Dunn and Brody, 2008; McLean et al., 2014), and physical and mental health (Courtin and Knapp, 2015; Hartman-Maeir et al., 2007; Holt-Lunstad et al., 2015; Shankar et al., 2017). For individuals with neurological conditions, participation has also been linked to higher life satisfaction (Hartman-Maeir et al., 2007), happiness, and quality of life (McLean et al., 2014).

There are numerous ways of assessing social participation (Dijkers, 2010). Regardless of which tool is chosen, it is imperative to assess both accomplishment of social activities, as well as the subjective meaning or satisfaction associated with participation in those activities (Piškur et al., 2013). Limiting assessment to whether someone can or cannot accomplish an activity excludes information on whether the activity was satisfying: a key attribute affecting the level of social participation (Ginis et al., 2017; Heinemann et al., 2010). A few studies have examined the association between accomplishment and satisfaction with social participation (Hartman-Maeir et al., 2007; Lund et al., 2007) in a population of people who have a neurological condition, but they have not examined how factors are differentially associated with the two concepts. The aim of this study was, therefore, to advance our understanding of these two aspects of social participation. More specifically, our objectives were to examine the clinical and environmental factors correlated with accomplishment and satisfaction in an array of social roles, and to identify similarities and differences. The findings from this study can provide direction to occupational therapists working to improve social participation in individuals with neurological conditions.

Literature review

It has been shown that satisfaction with social participation is more strongly linked to quality of life than accomplishment. A study by Levasseur et al. (2004) is one of the few that simultaneously examined accomplishment and satisfaction with social roles. In their study of 46 older adults with physical disabilities (30% with neurological disorders), they found individuals' satisfaction with participation was more strongly associated with quality of life than their accomplishment level. Some years later, using a longitudinal design, they found satisfaction with participation in social roles to be one of the two best predictors of quality of life (Levasseur et al., 2008). These associations with quality of life suggest that satisfaction is distinct from accomplishment, so it is possible the factors associated with the two may also be unique.

Accomplishment of social participation has been examined both quantitatively and qualitatively. Quantitatively, lower levels of executive functioning (Foster and Hershey, 2011) and mobility (Boucher et al., 2010) are associated with lower levels of accomplishment. Qualitatively, individuals with neurological conditions have reported that accomplishment of community activities (Roger, 2007) or work (Edvardsson et al., 2006) is often limited by disease symptoms and by others' attitudes and beliefs, including discrimination (Shier et al., 2009) or being treated as different from others (Dickson et al., 2011). Conversely, social support (Isaksson et al., 2007) facilitates accomplishment of a range of important activities. Increased satisfaction with social participation has been shown to be significantly correlated with higher levels of accomplishment (Hartman-Maeir et al., 2007; Lund et al., 2007) and disability status (Forhan et al., 2012). While satisfaction with social participation is influenced by accomplishment, other personal and environmental factors outside of accomplishment need to be explored. This analysis compares the personal (for example, age, marital status), clinical (for example, physical health, mental health, mobility), and environmental factors (for example, stigma, social support) associated with satisfaction versus accomplishment.

Among the quantitative tools used to measure participation, the Assessment of Life Habits (LIFE-H) is the only one that simultaneously assesses both the accomplishment of, and satisfaction with, participation across a range of social roles and daily activities (Fougeyrollas et al., 2002). The LIFE-H assesses participation in what the developers call life habits, which are categorized as either “daily activities or social roles” (Fougeyrollas et al., 2002). The LIFE-H captures social roles in six different domains: responsibility, interpersonal relationships, community life, education, employment, and recreation. The LIFE-H has adequate test–retest and inter-rater reliability for several populations (Figueiredo et al., 2010; Poulin and Desrosiers, 2009). Levasseur et al. (2007) compared the constructs measured in the Life-H with those described in the International Classification of Functioning, Disability and Health (ICF), concluding they are similar although the terminology varies slightly (Levasseur et al., 2007). Broadly speaking, the taxonomy of life habits covers the “activities/participation” dimensions in the ICF.

Prior analyses using the LIFE-H on a sample of older adults, 53% of whom had neurological conditions, found no significant correlation between accomplishment and satisfaction for most social role domains, leisure and interpersonal relationships being the exceptions (Poulin and Desrosiers, 2009). This supports the hypothesis that the ability to participate and the satisfaction derived from participation are distinct entities. An additional LIFE-H study compared the predictors of social role accomplishment versus satisfaction in a sample of older adults who had a spectrum of disabilities (18% neurological conditions) using total scores rather than domain scores (Levasseur et al., 2010). Common predictors of higher levels of both accomplishment and satisfaction were better self-perceived stability of disabilities, wellbeing, and functional independence. However, only satisfaction with participation was correlated with social support and attitudes (Levasseur et al., 2010). In a study examining correlates with accomplishment, better affect and mobility were the only significant correlates (Desrosiers et al., 2008).

Although prior studies have examined the association between social participation accomplishment and satisfaction for individuals with neurological conditions such as stroke (Hartman-Maeir et al., 2007), traumatic brain injury (McLean et. al., 2014), and spinal cord injury (Lund et al., 2007), there have been no large-scale studies that have looked at the commonality across neurological conditions. Nor have studies compared how correlates for accomplishment differ from those for satisfaction within this population.

Study context

The data for this secondary data analysis came from the second month of a cohort study that was part of a larger mixed methods study called the “Living with the Impact of a Neurological Condition” (LINC) study, conducted as part of the National Population Health Study of Neurological Conditions funded by Health Canada (Public Health Agency of Canada, 2014). The LINC protocol manuscript provides full details on that study methodology (Versnel et al., 2013). Briefly, the LINC study consisted of a large cross-sectional survey of adults with a broad array of neurological conditions living in Canada (Versnel et al., 2013) and a smaller, nested sub-sample who participated in a longitudinal cohort study. Participants (n = 754) were first recruited for the cross-sectional survey via letters of invitation, posters, websites, and social media primarily through a national health charity and known disease registries across Canada. The cohort study (n = 117), conducted from February to December 2012, followed by sequentially sampling adults age 18–65 to capture more detailed data on the working age population. The LIFE-H was administered in the second month of the cohort study. Ethics approval for each study within the LINC study was obtained from the Health Canada and Public Health Agency of Canada Research Ethics Board, as well as appropriate ethics review boards at Dalhousie University, Queen's University, University of Manitoba, and the University of Prince Edward Island.

Informed consent was obtained from all participants for each study. The aim of this secondary analysis was to explore and compare which clinical and environmental factors are correlated with accomplishment and satisfaction in social roles in individuals with an array of neurological conditions, after controlling for personal attributes.

Method

Sample and data collection

For this secondary data analysis we included participants (n = 88) who had complete survey data and Life-H assessments from month two of the cohort study, which was collected two to six months after the initial survey. The standardized, clinical, and research tools administered in the survey assessed the independent variables, and the Life-H tool assessed the dependent variables.

Variables and measurement instruments

Dependent variables

LIFE-H

The dependent variables were measured with the social role domains in the LIFE-H, short version (Fougeyrollas et al., 2002). The Life-H is a quantitative tool with 77 items, divided into 12 domains (six daily activities and six social roles). For this analysis, only the social roles were chosen: responsibility (eight items), interpersonal relationships (seven items), community life (eight items), education (two items), employment (eight items), and recreation (seven items). The education domain was not included in our analyses, because participants' age range (18 to 65 years) made this role less relevant.

For each item assessed within the six LIFE-H social role domains there is an evaluation of accomplishment and satisfaction. The LIFE-H accomplishment score is calculated using a scoring algorithm that aggregates the person's perceived degree of difficulty performing each social role in their current environment, and the type of assistance required to perform the role. The items assessing difficulty are worded in the following way: “For the following life habit, indicate how you generally accomplish it” (response categories: no difficulty, with difficulty, accomplished by a proxy, not accomplished, or not applicable). Items assessing assistance use the phrasing, “What type of assistance is required to accomplish the following life habit?” (response categories: no assistance, assistive device, adaptation, and/or human assistance). As per protocol, a score was calculated for each social role domain by aggregating the individual items within that social role. In addition, a total social role score was created by aggregating the scores from all the social role domains. The individual domains and total scores each ranged from 0 to 10, with a higher score indicating a higher level of accomplishment.

The LIFE-H satisfaction questions evaluate how much the person appreciates his/her degree of accomplishment. For each item, the assessment of satisfaction ranges from 1–5 (response categories: very dissatisfied, dissatisfied, more or less satisfied, satisfied, and very satisfied). There is no established scoring algorithm for calculating a satisfaction score for each social role domain, thus the team decided to use the mean of individual item responses for each domain. The decision was based on review of the manuals and validation literature on the Life-H, the experience of the second author (who is a frequent user and validator of the LIFE-H), and consultations with biostatisticians involved in the initial analyses of LINC study data. A total social role satisfaction score was calculated as the mean of all social role domain scores.

Independent variables

Independent variables were grouped as environmental, clinical, and personal attributes. Measures were selected by the research team from the LINC dataset, based on past clinical knowledge and experience with the dataset. If more than one possible measurement tool was available for an attribute, priority was given to established tools or modules from the Canadian Community Health Survey (CCHS). The selected variables are described below, organized by measurement instrument or survey.

CCHS modules

The CCHS is a large cross-sectional survey developed and conducted by Statistics Canada on an ongoing basis to collect information from Canadians regarding their health status, determinants of health, and health care utilization (Statistics Canada, 2008). For this analysis, the following CCHS items/modules and response categories were used. Five CCHS items assessed personal factors: gender (1 = male, 2 = female); marital status (1 = single/never married, 2 = married/common law, 3 = widowed/divorced/separated); employment (1 = working, 2 = not working due to health, 3 = not working due to other reasons); education (0 = up to some post-secondary education, 1 = post-secondary graduation); and number of years since symptom onset. Two CCHS items assessed clinical factors: general mental health (1 = excellent, 2 = very good, 3 = good, 4 = fair/poor) and general physical health (1 = excellent/very good, 2 = good, 3 = fair/poor). Finally, two CCHS items assessed environmental factors: household income in Canadian dollars (1 = < 20,000, 2 = 20,000–59,999, 3 = 60,000–89,999, 4 = > = 90,000) and paid/unpaid assistance (0 = no support, 1 = assistance from family/friend only, 2 = assistance from family/friend and social services). For all items, response categories were collapsed if there were too few responses to provide reasonable comparisons.

Neuro-QOL

The Quality of Life Outcomes in Neurological Disorders (Neuro-QOL) is a relatively new self-report measure of quality of life specifically developed to capture information on health-related quality of life when living with a neurological condition (Nowinski et al., 2010). Although testing of psychometric properties is ongoing, initial investigations demonstrated good convergent validity with the total score and related subscales from the Quality of Life in Epilepsy Inventory (QOLIE-31) (Nowinski et al., 2010).

For this study, the following Neuro-QOL sub-domain scales were used. To assess clinical factors: (a) function: upper extremity function (variable name: fine motor) and lower extremity function (variable name: mobility) scales; (b) symptoms: fatigue scale; (c) emotional: depression scale; and (d) cognition: general cognition scale. To assess environmental factors, the stigma scale was used. For each sub-domain the five response categories (wording varied) for each item (eight per sub-domain) were summed, then, as per Neuro-QOL protocols, T-scores were calculated; the average was 50 and the standard deviation was 10. Thus, a T-Score higher than 50 is considered better as compared to the general population, whereas a T-Score less than 50 is considered worse than the general population.

Patient Activation Measure (PAM-13)

The short form of the Patient Activation Measure (PAM-13) was developed to operationalize the concept of “patient activation” (Hibbard et al., 2005). The PAM-13 has an internally consistent, unidimensional, probabilistic Guttman-like scale. Each of the 13 items has five response categories: (1) strongly disagree; (2) disagree; (3) agree; (4) agree strongly; and (5) non-applicable. Using a conversion algorithm, raw item scores are converted into activation scores that range from 0 to 100, higher scores indicating a higher level of activation.

Multidimensional Scale of Perceived Social Support (MSPSS)

The MSPSS is designed to measure the person's perceptions of social support in three sub-domains: significant others, family, and friends (Zimet et al., 1988). The MSPCC has 12 items, equally divided into the three sub-domains, that ask about sources of social support. Each of the items has the same response scale from (1) very strongly disagree to (7) very strongly agree; higher scores indicate higher levels of support. Studies have shown the MSPSS to have good internal reliability across different study populations Zimet et al., 1988, 1990) and test–retest reliability (Zimet et al., 1988). It has also demonstrated moderate (Zimet et al., 1988, 1990) to high construct validity (Canty-Mitchell and Zimet, 2000).

In summary, selected variables represented environment factors (Neuro-QOL: stigma; CCHS: household income, paid/unpaid assistance; MSPSS: social support), clinical factors (Neuro-QOL: general cognition, fine motor skills, mobility, fatigue, depression; CCHS: years since onset of symptoms, general physical health, general mental health; PAM-13: patient activation), and personal factors (CCHS: age, gender, marital status, education). Personal factors were not the focus of the study, and were only used to control for significant variation between individuals.

Analysis

First we conducted analyses to describe participants. The mean and standard deviations were calculated for all the continuous variables; frequency and percentages were calculated for categorical variables. Bivariate associations between each of the independent variables and dependent variables were then estimated using an ANOVA for categorical independent variables or Pearson correlations for continuous independent variables. Only independent variables that had a bivariate association with the Life-H social role domains for accomplishment and satisfaction of p < = .10 were included in the linear regression models. The independent variables were added to the linear regression models in blocks that represented the three factors, starting with environment, then clinical, and finally personal factors. This order was chosen as the best way to answer our research question, which was to examine which environmental and clinical factors were significantly associated with social role accomplishment and satisfaction, controlling for personal factors. After each block of variables was added to the model, backward regression techniques were used to eliminate individual variables, starting with the variable that was least statistically significant, continuing until the only variables remaining in the model were statistically significant (p < .05). This process was repeated for each dependent variable. In the analysis, the highest-level category was the comparison for categorical variables. For all components of this study, ethical approval was received from the agencies and ethics review boards at the participating universities.

Results

Overview of respondents

The analyses included 88/110 month-two respondents who completed the Life-H. These participants were primarily married (62%), highly educated (77%), female (64%), and in excellent or very good mental health (46%) (see Table 1). The most commonly reported neurological conditions were migraine (22%), multiple sclerosis (21%), brain injury (21%), epilepsy (18%), and Parkinson's disease (18%). Many other neurological conditions (dystonia, stroke, spina bifida, spinal cord injury, muscular dystrophy, brain and spinal cord tumors, Alzheimer's disease and other dementias, Huntington's disease, hydrocephalus, amyotrophic lateral sclerosis (ALS), and Tourette syndrome) were reported in lesser percentages. Most participants reported multiple conditions. For example, 22% of participants reported having migraine; however, none reported having only migraine. The mean of the T-Scores for all the Neuro-QOL measures were close to 50. Although 24% rated their general physical health as fair or poor, social support using the MPSS was rated as high (5.8/7); 58% needed no assistance from family/friends or social services.

Table 1.

Characteristics of the participants.

Categorical variables	n (%)	Categorical variables	n (%)
Gender		Education
1 = Male	31 (36)	0 = up to some post-secondary education	20 (23)
2 = Female	55 (64)	1 = post-secondary graduation	66(77)
Marital status		General physical health
1 = single/never married	20 (23)	1 = excellent/very good	22 (26)
2 = married/common law	54 (62)	2 = good	29 (35)
3 = widowed/divorced/separated	13 (15)	3 = fair/poor	33 (39)
Income in Canadian dollars		General mental health
1 = < 20,000	10 (15)	1 = excellent	14 (17)
2 = 20,000–59,999	26 (39)	2 = very good	24 (29)
3 = 60,000–89,999	13 (20)	3 = good	25 (30)
4 = > = 90,000	17 (26)	4 = fair/poor	20 (24)
Paid/unpaid assistance		Employment status^a
0 = no support	50 (58)	1 = working	35 (41)
1 = assistance from family/friend only	22 (25)	2 = not working due to health	35 (41)
2 = assistance from family/friend and social services	15 (17)	3 = not working due to other reasons	15 (18)
Continuous variables	n	Mean (SD)	Range
Age		48.9 (11.1)	18–65
Patient Activation Measure (PAM-13)	85	62.3 (14.5)	33.5–100
Years since symptoms	79	19.7 (13.4)	0.1–60.7
MSPSS	84	5.8 (1.0)	1.2–7
Neuro-QOL (T-scores)
Fatigue	87	51.8 (7.5)	29.5–74.1
Depression	87	49.19(8.6)	36.9–75.0
Applied cognitive	86	41.6 (9.6)	23.0–59.3
Mobility	87	43.6 (10.6)	12.8–53.8
Fine motor	87	44.5 (11.3)	16.5–58.6
Stigma	87	52.3 (7.2)	39.2–69.6

The independent variable “employment” was not used in the regression models.

PAM-13: Patient Activation Measure; MSPSS: Multidimensional Scale of Perceived Social Support; Neuro-QOL: Quality of Life Outcomes in Neurological Disorders.

Life-H Scores

When LIFE-H accomplishment and satisfaction scores for the mean, standard deviation, and range were examined, individuals indicated high levels of accomplishment across all social roles. The scores ranged from a low (mean of 6.8 out of 10) for recreation to a high (8.9) for responsibilities. A similar pattern was seen for satisfaction, with the mean scores very close together in magnitude, ranging from a low (3.6 out of 5) for recreation and employment to a high of (4.2 out of 5) for responsibilities.

Bivariate correlations

Bivariate tests of association between independent variables and social role domains found some similarities between accomplishment and satisfaction scales (Table 2). Mobility and general physical health were associated with all social role domains and the total scores for both accomplishment and satisfaction.

Table 2.

Independent variables that had a statistically significant association (p value) with social role domains for accomplishment and satisfaction.

	Responsibilities	Interpersonal relationships	Community life	Employment	Recreation	Total
Personal
Age	NS	NS	NS	NS	S = .041	NS
Education	S = .036	S = .027	NS	S = .097	NS	S = .049
Marital status	NS	A = .089	NS	NS	NS	NS
Clinical
Fine motor	A = < .001 S = .023	A = .008 S = .094	A = .000 S = < .001	A = .001	A = < .001 S = .075	A = .001 S = .016
Mobility	A = < .001 S = .023	A = .004 S = .025	A = .000 S = < .001	A = < .001 S = .001	A = < .001 S = .002	A = .001 S = < .001
General physical health	A = .006 S = .074	A = .008 S = .011	A = .018 S = .051	A = .009 S = .064	A = .001 S = .002	A = .001 S = .008
General mental health	S = .085	S = .003	NS	A = .085	NS	NS
PAM	S = .038	S = .002	NS	A = .09	NS	S = .063
General cognition	S = .017	S = .025	A = .022	NS	NS	S = .056
Fatigue	S = .036	S = .011	NS	NS	NS	NS
Depression	S = .039	S = .021	A = .08	NS	NS	NS
Environmental
Stigma	NS S = < .001	A = .005 S = < .001	NS S = .002	A = .051 S = .021	A = .002 S = < .001	A = .006 S = < 0.001
Social support	NS S = .097	A = .028 S = .002	NS	A = .026 S = .002	NS S = 0.1	S = 0.008
Paid/unpaid assistance	A = .000 S = .081	NS	A = .000 S = < .001	A = .000 S = < .001	A = .000 S = .001	A = < .001 S = < .001
Household income	NS	S = .059	NS	A = .054	NS	A = .084

Factors (gender and time since onset of symptoms) that were not statistically significant for any accomplishment and satisfaction scales were not included.

PAM: patient activation measure; A: significant for accomplishment; S: significant for satisfaction; NS: not significant for either satisfaction or accomplishment.

Table 3.

Statistically significant correlates of accomplishment and satisfaction for participation in social roles.

	β for significant variables (SD)		β for significant variables (SD)
Regression results	Accomplishment	R ²	Satisfaction	R ²
Responsibilities	Mobility = .05 (.01) General physical health 1 = .74 (.34) 2 = .68 (.31) 3 = comparison	.29	Stigma = –.03 (.01) Mobility = .02 (.01) General cognition = .02 (.01)	.25
Interpersonal relationships	Stigma = –.06 (.03) Mobility = .04 (.02) General physical health 1 = 1.23 (.470) 2 = .58 (.428) 3 = comparison	.23	Stigma = –.04 (.01) PAM-13 = .02 (.01) Household income 1 = –.54 (.31) 2 = –.00 (.22) 3 = –.49 (.26) 4 = comparison	.37
Community life	Paid/unpaid assistance 0 = 1.8 (.54) 1 = 1.4 (.59) 2 = comp Mobility = .12 (.02)	.58	Stigma = –.03 (.01) Mobility = .04 (.01)	.40
Employment	Mobility = .16 (.02) General mental health 1 = 1.43 (.76) 2 = 1.39 (.65) 3 = 1.89 (.65) 4 = comparison	.45	Paid/unpaid assistance 0 = .83 (.25) 1 = .28 (.29) 2 = comparison Social support = .26 (.08)	.25
Recreation	Stigma = –.09 (.03) Mobility = .15 (02) General physical health 1 = 1.39 (.52) 2 = 1.18 (.48) 3 = comparison	.59	Stigma = –.06 (.01) Paid/unpaid assistance 0 = .85 (.26) 1 = .35 (.28) 2 = comparison General physical health 1 = .54 (.37) 2 = .06 (.22) 3 = comparison Age = –.02 (.01)	.44
Social roles total	Stigma = –.04 (.02) Mobility = .10 (.01) General physical health 1 = 1.08 (.36) 2 = .79 (.33) 3 = comparison	.58	Stigma = –.04 (.01) Paid/unpaid assistance 0 = .65 (.19) 2 = .31 (.21) 3 = comparison General physical health 1 = .45 (.17) 2 = –.03 (.16) 3 = comparison Education 0 = –.31 (.15) 1 = comparison	.46

PAM- Patient Activation Measure

For the accomplishment scales, three out of nine clinical variables (fine motor, mobility, and general physical health) were significantly associated with scores for all the social role domains and the total score. Out of the four environmental variables, paid/unpaid assistance was the only variable associated with the total score and four individual social roles domains (all except interpersonal relationships), whereas stigma was associated with the total score and three domains (all except community life and responsibilities).

For the satisfaction scales, two clinical variables (mobility and general physical health) and one environmental variable (stigma) were significantly associated with scores for all five social role domains and the total score. The environmental variables paid/unpaid assistance and social support were associated with four domains and the total score. Paid/unpaid assistance was not associated with interpersonal relationships, and social support was not associated with community life.

Linear regression results

More clinical variables were significantly associated with the accomplishment scales than environmental variables. Only two environmental variables were significant: stigma with interpersonal relationships and community life domains, and paid/unpaid assistance with the community life domain. The clinical variable mobility was significantly associated with accomplishment for all five domains, whereas general physical health was significant for three (responsibilities, interpersonal relationships, and recreation). Employment was the only social role to which general mental health was significantly correlated. The total accomplishment score had similar results, with stigma, mobility, and general physical health all having a significant effect. Model fit ranged from a low R² = .23 for interpersonal relationships to a high R² = .59 for recreation.

Inversely, for the satisfaction scales, more environmental than clinical variables were significantly associated with the scales. Stigma was significant across four domains (responsibilities, interpersonal relationships, community life, and recreation), and paid/unpaid assistance across two (employment and recreation). Employment was the only social role that was not significantly correlated with stigma and was correlated with social support. Clinical variables were significant less often: mobility was related to social roles for only two social role domains (responsibilities and community life), and general physical health was significant only for recreation. In addition, stigma, paid/unpaid assistance, and general physical health were significantly associated with the total satisfaction scale of social roles. For most social roles, different independent variables were correlated with accomplishment compared to satisfaction. Model fit ranged from a low R² = .25 for responsibilities and employment, to a high of R² = .44 for recreation. Within the same social roles, model fit was lower for satisfaction scales than for accomplishment scales across all domains except interpersonal relationships.

Discussion

The aim of this secondary data analysis was to explore and compare the clinical and environmental factors associated with social role participation accomplishment and satisfaction in individuals with an array of neurological conditions. The results indicated that social role accomplishment and satisfaction have distinct correlates. The clinical variable of mobility was associated with the accomplishment of all social roles, whereas the environmental variable stigma was most frequently associated with satisfaction across social role domains. Indeed, stigma was significantly associated with social role satisfaction in the Life-H domains of responsibilities, interpersonal relationships, community life, and recreation—every social role except for employment. Employment may be a distinct environment for individuals with neurological conditions where stigma appears to be less relevant.

Our study has some limitations, one being the sampling. This was a convenience sample of 88 individuals with a range of neurological conditions, who were relatively independent and generally very accomplished and satisfied with their social roles. Given the relatively small sample size, certain variables may have not reached statistical significance in our multivariate models. However, we used a national sampling frame that represented adults with a variety of neurological conditions. In addition, variables used in the analyses came from established tools or surveys.

A second limitation is that, because of the nested study design, independent variable data was first collected using the online survey instrument. Participants in the cohort study were recruited from the online survey, participating in the month-two telephone interviews (containing LIFE-H data) from two to six months after the independent variable data was collected. This time lag may have reduced the strength of the association between the independent variables and the dependent variables. Alternatively, assessing independent variables prior to the dependent variables may strengthen a conclusion that significantly correlated independent variables are predictors rather than mere correlates of social role accomplishment and satisfaction.

Mobility has been previously recognized as an important factor supporting active participation in social roles following a stroke (Desrosiers et al., 2008). Mobility, as measured by the NeuroQuol, includes walking/moving, balance, and endurance. More than other clinical variables, such as general physical or mental health, mobility reflects the ability to “do” activities that comprise social roles. As evidenced by our linear regression, the importance of mobility was stronger for certain social roles where an ability to go from one place to another would facilitate involvement, such as employment. Employment included participation in activities such as holding a paid job, volunteering, homemaking tasks, and using services at a place of employment. In contrast, mobility was not as strongly associated with interpersonal relationships, which included participation in activities that may be less dependent on mobility such as maintaining close relationships and friendships.

The consistent association of less mobility and more stigma with lower social role accomplishment and satisfaction suggests that accessibility issues, representing physical barriers for accomplishment and stigmatizing attitudes for satisfaction, need to be addressed to improve social participation. Still, the importance of these barriers varies depending on the social role. A case in point is our finding for the social role recreation that includes participation in sports and artistic activities. Similar to other social roles, mobility was related to accomplishment, but stigma had a strong association with both accomplishment and satisfaction. This finding is supported by prior research showing that physical and attitudinal barriers affect participation in physical activity (Newitt et al., 2016) and recreation programs (Wilder, 2011). Contrast this with our findings for employment; once again mobility was strongly associated with the accomplishment of employment, but stigma was not associated with accomplishment or satisfaction. Rather, social support and unpaid assistance became important. These results suggest physical barriers may still affect accomplishment of work activities, but having social support and not needing paid assistance may mitigate the effects of a stigmatizing environment. Although it does not completely explain why stigma was not associated with employment, other research confirms that the nature of the condition/disability is an important factor in determining whether someone is accepted or not in a work environment (Vornholt et al., 2013). Our sample had a range of conditions that may be more or less stigmatizing. Another consideration is that the social role employment included non-paid work. Fifty-nine percent of our sample were not employed, so more of our sample may have engaged in volunteer work or household tasks rather than paid employment. The reason employment seems to be a distinct social role for persons with neurological conditions is not clear from our data; this finding will need to be explored further in subsequent studies.

How is stigma related to participation?

Stigma has been defined as “a social process… characterised by exclusion, rejection, blame or devaluation that results from experience, perception or reasonable anticipation of an adverse social judgment about a person or group” (Scambler, 2009: p. 441). The person experiencing stigma is judged because of an “undesired difference” that is “deeply discrediting” (Goffman, 1963). Enacted stigma is negative attitudes or discriminatory treatment experienced by an individual with devalued characteristics. When enacted stigma is experienced or perceived, it can be internalized (Corrigan et al., 2006). Stigma has long been considered a component of chronic illness (Scambler, 1990). Albrecht et al. (1982) describe two components in relation to the amount of stigma experienced: perceived responsibility for the illness development and the amount of discomfort it creates in social interactions.

The Neuro-QOL measure for stigma includes items that capture both enacted and internalized stigma (Molina et al., 2013). Our findings indicate that stigma is a significant factor in the accomplishment of two social roles: interpersonal relationships and recreation. The result regarding interpersonal relationships may be related to caregiver issues. A study by Jenkinson et al. (2000) found that people with ALS, which often results in higher demands placed on family caregivers, experience marginalization. The domain of interpersonal relationships may be picking up on perceptions of “being a burden” that might affect the ability to participate. In the domain of recreation, activities often occur outside the home, making people vulnerable to the judgment of people who do not know them personally. Stigma may occur because of judgments made on the basis of appearance or behavior (Scambler, 2009). For example, given the high level of fatigue among people with neurological conditions, they may appear as if they are not giving full effort to participation. Participants themselves may experience internalized stigma if they are surrounded by judgments that they are “not trying hard enough.”

The relationship of stigma to satisfaction with social roles in this research is potentially complex. It is unclear whether the significant association between stigma and satisfaction with social roles is due to perceived or enacted stigma, possibly resulting from unmet needs such as a lack of adequate supports, or the result of discriminatory attitudes of service providers. Perceptions of stigma in relation to satisfaction with participation may be related to participants' feelings that their needs are not being addressed when they try to participate in social roles. Even though the independent variable for education was not significant in the models, and it was not correlated with stigma, it is unknown whether the fact that the sample was highly educated may have increased their awareness of the existence of stigma because they are more able to reflect on their situation and the reactions of others.

Conclusion

For people living with neurological conditions, accomplishment of and satisfaction with social participation are distinct entities. Our data suggests that the factors associated with each differ; individual physical ability is more important for accomplishment, whereas lower levels of enacted and internalized stigma are more closely aligned with the experience of satisfaction with social roles. This supports the premise that improving physical ability will not necessarily improve satisfaction with social roles. These findings indicate that it is important for occupational therapists to separately assess both accomplishment and satisfaction when trying to improve social participation. Results also indicate that, at least for individuals with neurological conditions (and maybe other conditions), rehabilitation efforts must go beyond addressing physical limitations, to providing people and their families with the knowledge and skills to cope with discrimination and stigma. This has important implications for how therapists address the needs of individuals with neurological conditions. Finally, the finding that stigma is a significant factor contributing to satisfaction with most social roles, but differs across roles, is an important contribution to the literature on people living with neurological conditions' social participation.

Key findings

Factors associated with satisfaction with social role participation differ greatly from those associated with accomplishment.

Mobility was the strongest correlate for accomplishment in social roles; stigma was strongest for satisfaction.

What the study has added

The assumption that an increased ability to accomplish social activities will automatically improve satisfaction with participation should be called into question; environmental factors such as stigma need to be addressed.

Footnotes

Acknowledgments

The LINC study was part of the National Population Health Study of Neurological Conditions. We wish to acknowledge the contributions of the membership of Neurological Health Charities Canada and the Public Health Agency of Canada and our many research assistants, who were instrumental in the day to day work of the study, particularly the monthly phone calls. The authors would also like to thank Lise Trottier, statistician (Research Center on Aging, Sherbrooke (Québec)), for her capable and efficient assistance with this secondary data analysis.

Research ethics

For all components of this study, ethical approval was received from the Health Canada and Public Health Agency of Canada Research Ethics Board, as well as the appropriate ethics review boards at Dalhousie University, Queens University, the University of Manitoba, and the University of Prince Edward Island. Dalhousie University ethics project #2010-2370, approval was received in 2011. Health Canada ethics project file #2010-0073. Participants gave written informed consent.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

Funding for the study was provided by the Public Health Agency of Canada. The opinions expressed in this publication are those of the authors/researchers, and do not necessarily reflect the official views of the Public Health Agency of Canada. Dr Desrosier's contribution to this research was supported by the Townsend Fellowship in Occupation and Society.

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