Participation restrictions among adolescents and adults with neonatal brachial plexus palsy: the patient perspective

Abstract

Purpose: To examine the impact of neonatal brachial plexus palsy (NBPP) on societal participation of adolescents and adults.

Methods: This cross-sectional study was conducted among patients with NBPP, aged ≥16 years, who had visited our NBPP clinic. Patients completed questions on the influence of NBPP on their choices regarding education/work and their work-performance, the Impact on Participation/Autonomy questionnaire and the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P). In addition, health-related quality of life (HRQoL) was assessed.

Results: Seventy-five patients participated (median age 20, inter quartile range 17–27). Twenty were full-time students, 28 students with a job, 21 employed, two unemployed, and four work-disabled. Sixty-six patients had had a job at some stage. Patients’ overall HRQoL was comparable to the general population. 27/75 patients reported that NBPP had affected their choices regarding education and 26/75 those regarding work. 33/66 reported impact on their work performance. On the Impact on Participation/Autonomy questionnaire, 80% (49/61) reported restrictions in the work-and-education domain, 74% in social-relations and 67% in autonomy-outdoors. 37/61 reported participation restrictions on the USER-P.

Conclusions: Although their overall HRQoL was not impaired, a substantial proportion of adolescent/adult patients reported that NBPP had an impact on choices regarding education and profession, as well as on work-performance. Restrictions in participation, especially in work and education were also reported. Guiding patients in making choices on education and work at an early stage and providing tailored physical as well as psychosocial care may prevent or address restrictions, which may improve participation.

• Implications for Rehabilitation

• Adolescent and adult patients with neonatal brachial plexus palsy perceive restrictions in societal participation, especially regarding the work-and-education domain.

• All patients with neonatal brachial plexus palsy may perceive restrictions in societal participation regardless of lesion severity, treatment history and side of the lesion.

• Adolescents and adults with neonatal brachial plexus palsy report that their choices regarding education and work, as well as their work-performance are influenced by their neonatal brachial plexus palsy.

• Patients with neonatal brachial plexus palsy should be followed throughout their life in order to provide them with appropriate information and treatment when health- or participation-related issues arise.

• Rehabilitation treatment is the best option to address all of the aforementioned issues, as surgical options in adolescents and adults are limited.

     

Effects of a multidisciplinary group rehabilitation programme on participation of the visually impaired elderly: a pilot study

Purpose: To pilot test the newly developed multidisciplinary group rehabilitation programme Visually Impaired elderly Persons Participating (VIPP). Method: A single group pretest–posttest design pilot study included 29 visually impaired persons (≥55 years). The intervention (20 weekly meetings) consisted of four components (practical training; education, social interaction, counselling and training of problem-solving skills; individual and group goal setting; home-based exercise programme). Participation was assessed with the Utrecht Scale for Evaluation of Rehabilitation–Participation (USER-P) and the Impact on Participation and Autonomy (IPA) questionnaire at baseline, immediately and 6 months after the intervention. Results: At scale level, no statistical significant changes over time were found whereas the effect size indicated small effects for restrictions and satisfaction with participation, and a medium effect for autonomy outdoors. At item level, improvements tended to occur in frequency of housekeeping, in restrictions in housekeeping and outdoor activities and in satisfaction with the partner relationship. Satisfaction with leisure indoors and autonomy regarding using leisure time tended to increase as well. Conclusions: The tentative conclusion of this small-scale pilot study is that the VIPP programme modestly benefits perceived restrictions in participation, satisfaction with participation and autonomy outdoors of the visually impaired elderly. These preliminary findings warrant further investigation.

Implications for Rehabilitation

• Visually impaired elderly persons perceive restrictions in participation and participate less in society compared to peers.

• Since participation contributes to quality of life and well-being, it is important that visually impaired elderly persons maintain or enhance their level of participation in society.

• This pilot study showed that the multidisciplinary group rehabilitation programme Visually Impaired elderly Persons Participating (VIPP) modestly benefits perceived restrictions in participation, satisfaction with participation and autonomy outdoors of the visually impaired elderly.

     

Development and structural validation of a shortened version of the Participation Scale

Purpose: To validate a shortened version of the Participation Scale (P-scale) that will be quicker to use and to describe the factor structure found in the P-scale data in various study samples. Methods: A large multi-country and multi-cultural database was compiled consisting of 5125 respondents. Item analysis, explanatory factor analysis and confirmatory factor analysis were applied to identify items for deletion and investigate the factor structure of the P-scale. Results: The multi-country database included 11 databases from six different countries. Respondents were affected by a range of health conditions, including leprosy, HIV/AIDS, dermatological conditions and various disabilities. Of the respondents included 57% were male. The P-scale Short (PSS) contains 13 items. A two-factor structure, with factors named “work-related participation” (three items) and “general participation” (10 items), showed the best model fit (Comparative Fit Index = 0.983, Tucker Lewis Index = 0.979, Rooted Mean Square Error of Approximation = 0.061). The Cronbach’s alphas were very good for both the whole scale and the subscales, 0.91, 0.83 and 0.90, respectively. Correlation between the two factors was high (r = 0.75) indicating that interpreting the P-scale as measuring an overall factor “participation” is still valid. A very high correlation (r = 0.99) was found between the full P-scale and the PSS. Conclusions:The findings suggest good validity of the P-scale across a range of languages and cultures. However, field testing needs to confirm the validity of the PSS to measure the level of social participation restrictions across cultures and health conditions.

Implications for Rehabilitation

• The Participation Scale can be used to measure restrictions in social participation.

• The Participation Scale showed consistent structural validity across many different cultural settings and target groups.

• A shorter version of the scale was developed, namely the Participation Scale Short.

• The Participation Scale Short needs field testing before application to test its reliability, validity, reduction in administration time and usefulness.

     

Participation in People Living With Spinal Cord Injury in Switzerland: Degree and Associated Factors

ObjectiveTo describe different domains of participation such as productive, leisure and social activities and describe sociodemographic and spinal cord injury (SCI)-related characteristics that are associated with participation in these domains in a large sample of community-dwelling individuals with SCI in Switzerland.DesignCross-sectional population-based survey within the Swiss Spinal Cord Injury Cohort Study. Participation in major life domains was measured by the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation). Univariable unconditional analysis and unbiased recursive partitioning were used to identify the predominant associations of sociodemographic and SCI-related characteristics with multiple dimensions of participation.SettingCommunity.ParticipantsSwiss residents aged 16 years or older and living with traumatic or nontraumatic SCI (N=1549).InterventionsNot applicable.Main Outcome MeasureThe USER-Participation, a 32-item self-report questionnaire with 3 scales (Frequency, Restrictions, and Satisfaction) to assess key domains of participation (productive, leisure, social).ResultsFrequency (median 34.5 out of 100) in productive, outdoor leisure, and social activities was reduced with distinctive perceived restrictions in work and education, sports, and partner relationships. Domestic leisure activities (65.4%) and maintaining social relationships (76.1%) were those activities most often performed and with least perceived restrictions. Participants were generally satisfied with their current daily life activities. Lower scores across all participation scales were associated with more severe SCI, higher age, being female, not having a partner, and lower level of education.ConclusionsThis study provides a thorough analysis of participation in major life domains of individuals with SCI in Switzerland. Different risk groups for reduced levels in participation in productive, leisure, and social activities were identified. This population-based evidence is instrumental to the better targeting of rehabilitation and policy interventions that aim to improve community participation.     

Long-term restrictions in participation in stroke survivors under and over 70 years of age

Purpose: This study aims to (1) assess differences in participation restrictions between stroke survivors aged under and over 70 years and (2) identify predictors associated with favorable and unfavorable long-term participation in both age groups.

Methods: Prospective cohort study in which 326 patients were assessed at stroke onset, two months and one year after stroke. The Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) was used to measure participation restrictions one year after stroke. Bivariate and multivariate logistic regression analyses were performed including demographic factors, stroke-related factors, emotional functioning and comorbidity as possible predictors.

Results: Stroke survivors aged over 70 years perceived more participation restrictions in comparison to stroke survivors aged under 70 years one year after stroke. Independently significant predictors for unfavorable participation outcomes were advancing age, more severe stroke and anxiety symptoms in patients aged over 70 years, and female gender, more severe stroke, impaired cognition and depression symptoms in patients aged under 70 years. Lower age was the only independent predictor associated with favorable participation after one year in stroke survivors aged over 70 years.

Conclusions: This study emphasizes the need to pay more attention to participation restrictions in elderly stroke survivors.

• Implications for rehabilitation

• More attention in the rehabilitation process should be paid to restrictions in participation of stroke survivors aged older than 70 years, taking into account the different participation needs and predictors of older stroke survivors.

• Early screening on the presence of anxiety symptoms could potentially prevent long-term restrictions in participation in stroke survivors aged over 70-year old.

• Stroke survivors experience considerable restrictions in physical activity and mobility after one year, highlighting the need for the development of community-based exercise programs for stroke survivors.

     

Development of the participation and environment measure for children and youth: conceptual basis

Purpose: The purpose of this paper is to describe the conceptual foundation of a new parent-report measure of the participation and environment of children and youth: the Participation and Environment Measure ? Children and Youth version (PEM-CY). Methods: The ICF-CY provided an initial conceptual framework. Results from a qualitative study to obtain parent perspectives and in-depth review of the literature were used to identify relevant dimensions, items and rating scales for measurement. Results: Life situations, defined as sets of activity categories, were identified for three settings: home, school and community. Participation was operationalized as a multidimensional construct with three measurement dimensions: frequency, extent of involvement and desire for change. Parallel sets of items examining environmental factors that are perceived to help or facilitate participation were defined in relation to the typical activities of each setting. Conclusions: The PEM-CY provides a new measure of participation and environment that reflects the perspectives of parents of children and youth. The instrument will facilitate research and professional practice to understand and support the participation of children and youth with and without disabilities.

Implications for Rehabilitation

• As defined by the International Classification of Functioning, Disability, and Health (ICF), participation and environment are multidimensional constructs that have been challenging to measure.

• A new parent-report survey measure has been developed that is feasible for use in large-scale studies of children and youth with and without disabilities.

• The instrument examines participation and environment of children and youth aged 5 to 17 years across three major settings: home, school and community.

     

The cross-cultural equivalence of participation instruments: a systematic review

Purpose: Concepts such as health-related quality of life, disability and participation may differ across cultures. Consequently, when assessing such a concept using a measure developed elsewhere, it is important to test its cultural equivalence. Previous research suggested a lack of cultural equivalence testing in several areas of measurement. This paper reviews the process of cross-cultural equivalence testing of instruments to measure participation in society. Methods: An existing cultural equivalence framework was adapted and used to assess participation instruments on five categories of equivalence: conceptual, item, semantic, measurement and operational equivalence. For each category, several aspects were rated, resulting in an overall category rating of ‘minimal/none’, ‘partial’ or ‘extensive’. The best possible overall study rating was five ‘extensive’ ratings. Articles were included if the instruments focussed explicitly on measuring ‘participation’ and were theoretically grounded in the ICIDH(-2) or ICF. Cross-validation articles were only included if it concerned an adaptation of an instrument developed in a high or middle-income country to a low-income country or vice versa. Results: Eight cross-cultural validation studies were included in which five participation instruments were tested (Impact on Participation and Autonomy, London Handicap Scale, Perceived Impact and Problem Profile, Craig Handicap Assessment Reporting Technique, Participation Scale). Of these eight studies, only three received at least two ‘extensive’ ratings for the different categories of equivalence. The majority of the cultural equivalence ratings given were ‘partial’ and ‘minimal/none’. The majority of the ‘none/minimal’ ratings were given for item and measurement equivalence. Conclusion: The cross-cultural equivalence testing of the participation instruments included leaves much to be desired. A detailed checklist is proposed for designing a cross-validation study. Once a study has been conducted, the checklist can be used to ensure comprehensive reporting of the validation (equivalence) testing process and its results.

Implications for Rehabilitation

• Participation instruments are often used in a different cultural setting than initial developed for.

• The conceptualization of participation may vary across cultures. Therefore, cultural equivalence – the extent to which an instrument is equally suitable for use in two or more cultures – is an important concept to address.

• This review showed that the process of cultural equivalence testing of the included participation instruments was often addressed insufficiently.

• Clinicians should be aware that application of participations instruments in a different culture than initially developed for needs prior testing of cultural validity in the next context.

     

How are cognitive impairment,fatigue and signs of depression related to participation in daily life among persons with multiple sclerosis?

Abstract

Purpose: Factors that impact participation are of scientific and clinical importance. Participation in everyday activities among persons with multiple sclerosis (MS) can be compromised by various factors however the combined contribution of these factors to participation has not been explored. The aim of this study was to describe the relationship between cognitive impairment, physical disability and signs of depression and participation in daily life among persons with MS. Methods: Data from 200 participants were collected in an observational, prospective study. The majority was female, had mild physical disability, and an average age of 48.7. The impact of independent variables, including demographic and disease related data, levels of cognitive impairment, signs of depression and fatigue, on participation was investigated using path analysis. Results: Cognitive impairment was associated with restricted participation in domestic, leisure and outdoor domains. Restrictions in leisure and outdoor activities, but not domestic activities were related to signs of depression. Cognitive impairment was associated with the level of education and the level of physical disability. Conclusions: Increasing participation is an important outcome of rehabilitation. The results of this study suggest a multifactorial approach to intervention that considers physical, mental and emotional component to maximize participation among persons with MS.

• Implications for Rehabilitation

• Rehabilitation for persons living with multiple sclerosis (MS) should incorporate careful evaluation of physical disability, cognitive impairment and depression and their impact on participation.

• Clinicians need to evaluate participation in a variety of daily activities, including activities within and outside of the home, and leisure activities.

• Signs of depression may have a greater impact on participation in outdoor and leisure activities then on other activities.

     

Differences in Societal Participation Across Diagnostic Groups: Secondary Analyses of 8 Studies Using the Utrecht Scale for Evaluation of Rehabilitation-Participation

ObjectiveTo determine differences in participation problems between diagnostic groups and to examine diagnosis as a determinant of participation with and without statistically accounting for confounders.DesignSecondary analyses of data from 8 studies.SettingCommunity, the Netherlands.ParticipantsParticipants (N=1735) in diagnostic groups: stroke (n=534), subarachnoid hemorrhage (n=104), other acquired brain injury (n=163), progressive neurologic diseases (n=112), acute coronary syndrome (n=536), and spinal cord injury (n=286).InterventionsNot applicable.Main Outcome MeasuresParticipation was measured with the Utrecht Scale for Evaluation of Rehabilitation-Participation. This measure has 3 scales: Restrictions, Satisfaction, and Frequency. In this study, scores were also computed for 3 domains across these scales: Productivity, Leisure, and Social. Scores ranged from 0 (worst) up to 100 (best). Possible confounders were age, sex, level of education, marital status, and time since onset of the condition.ResultsSignificant differences were found in levels of participation between diagnostic groups. Individuals with acute coronary syndrome showed better participation scores in all scales and domains compared with most or all other diagnostic groups, except for the Social domain. Individuals with progressive neurologic diseases showed the lowest (worst) Restriction and Satisfaction scores, whereas those with stroke showed the lowest Frequency scores. After correcting for confounders, diagnosis explained significant proportions of the variance of participation (Frequency, 6.4%; Restrictions, 15.1%; Satisfaction, 5.1%; Productivity, 13.2%; Leisure, 13.8%; Social, 6.9%).ConclusionsParticipation problems occurred in all 6 diagnostic groups within this study. Differences were found in participation between diagnostic groups, demonstrating diagnosis-specific participation profiles, including after correcting for confounders.     

Conceptual issues in the measurement of participation among wheeled mobility device users

Purpose. To review current measurement approaches to activity and participation among wheeled mobility users and suggest key factors researchers should consider as they continue to develop and refine both the concept of participation and its measurement.

Methods. Literature review and expert opinion.

Results. Four issues are reviewed:

1. Participation as a concept and as a key domain of the revised International Classification of Functioning, Disability and Health (ICF).

2. The ‘perspective’ of current participation self-reports as they reflect the underlying cultural values of autonomy and independence.

3. The lack of sensitivity in current participation measures to assistive technology.

4. The significance of the ICF qualifiers ‘capacity’ and ‘performance’ to the accurate assessment of activity and participation among wheeled mobility users.

Conclusions. The following suggestions are offered as researchers continue to develop increasingly sophisticated instruments and methods: (1) participation measures need to be device-specific; (2) measures ought to capture both ‘capacity’ and ‘performance’; (3) methods need to be sensitive to those factors that impact mobility device use over time; (4) methods need to be sensitive to the complexities of both the social and physical environment as they impact device use; and (5) measures need to reflect the impact of multiple mobility device use.     

Perceived recovery as a predictor of physical activity participation after mild stroke

Purpose: The purpose of this study was to identify what acute care variables and/or perceived recovery factors could predict decreased participation in physical activities post-mild stroke. Methods: Secondary analysis of persons with mild stroke. Participants were split into two groups based on the percentage of high-demand leisure (HDL) activities retained on the Activity Card Sort (ACS) at 6 months post-stroke. Demographic variables, measures from the acute care setting (National Institutes of Health Stroke Scale (NIHSS), premorbid Barthel Index, and Modified Rankin Scale), and a perceived recovery measure collected at 6 months post-stroke (Stroke Impact Scale (SIS)) were analyzed between groups using independent samples t-tests and logistic regression. Results: There were no significant differences between groups on any of the demographic or acute care setting measures. Logistic regression indicated that only the overall perceived recovery (p = 0.05) and strength domain scores (p = 0.01) of the SIS were statistically significant factors for determining the percent of retained HDL activities following mild stroke. Conclusions: Clinicians must consider the clients’ own perceived recovery level and other more subjective factors in determining what barriers are limiting their physical activity participation after stroke.

Implications for Rehabilitation

• Persons with mild stroke are significantly decreasing their participation in physical activities post-stroke.

• Common stroke measures from the acute care setting that are currently used in practice are not sensitive enough to predict the changes in physical activity after mild stroke.

• Perceived level of recovery/limitations should be considered by clinicians in determining what barriers are affecting clients’ physical activity participation after stroke.

     

Preliminary validation study of the Spanish version of the satisfaction with life scale in persons with multiple sclerosis

Abstract

Purpose: To assess Life Satisfaction, using the Satisfaction with Life Scale (SWLS), and to analyze its psychometric properties in Multiple Sclerosis (MS). Method: Persons with MS (n?=?84) recruited at the MS Centre of Catalonia (Spain) completed a battery of subjective assessments including the SWLS, the World Health Organization Quality of Life instrument and disability module (WHOQOL-BREF, WHOQOL-DIS) and the Hospital Anxiety Depression Scale-Depression (HADS-D); sociodemographic and disability status data were also gathered. Psychometric properties of the SWLS were investigated using standard psychometric methods. Results: Internal consistency (Cronbach’s alpha coefficient) was 0.84. A factor analysis using a principal components method showed a one factor structure accounting for 62.6% of the variance. Statistically significant correlations were confirmed between SWLS with WHOQOL-BREF, WHOQOL-DIS and HADS-D. SWLS scores were significantly different between a priori defined groups: probable depressed versus nondepressed and participants perceiving a mild versus severe impact of disability on their lives. Conclusion: To the best of our knowledge, this study is the first to report on the psychometrics properties of the SWLS in persons with MS. It might be a valuable tool to use in appraising persons with MS through the continuum of care.

• Implications for Rehabilitation

• The Spanish version of the Satisfaction with Life Scale (SWLS) is a reliable and valid instrument in Multiple Sclerosis (MS).

• The SWLS is able to discriminate between participants with low or high scores on depressive symptoms or disability impact on life.

• SWLS might be useful through the continuum of care in persons with MS, including Rehabilitation Services.

     

An exploration of the relationship between two measures of children’s participation

Purpose: To investigate the relationship between the Children Participation Questionnaire and the Children’s Assessment of Participation with Hands.

Materials and methods: Two researchers classified the item contents independently using the International Classification of Functioning, Disability and Health-Child and Youth version as a guide. Parents of 51 children with intellectual and developmental disabilities completed both measures within one month.

Results: The linking results indicated that the two participation measures covered a broad range of life domains, which corresponded well to the conceptually matched Activities and Participation categories/chapters of the International Classification of Functioning, Disability and Health-Child and Youth version. A significant moderate link (Spearman’s ρ coefficient?=?0.68, p?ρ?=?0.47–0.71, p?Conclusion: This study provides evidence for the content and construct validity of the two children’s participation measures. The findings also offer important insights about the similarities and differences between the two measures. This knowledge will assist clinicians in selecting outcome measures.

• Implications for rehabilitation

• The Children Participation Questionnaire and Children’s Assessment of Participation with Hands demonstrate good content and convergent validity.

• The two measures capture distinctive aspects and/or degrees of children’s participation.

• Clinicians and researchers need to be aware of the similarities and differences between the two measures before selecting outcome measure.

     

Participation in life situations by persons with systemic sclerosis

Abstract

Purpose: To measure the frequency of participation in life situations. Methods: A sample of 83 persons with systemic sclerosis (SSc) completed questionnaires regarding the presence and severity of disease symptoms, disability [the Health Assessment Questionnaire (HAQ)], depression [the Center for Epidemiologic Studies Depression Scale (CES-D)], and participation [the Adelaide Activities Profile (AAP)]. On the AAP, individuals rate the frequency of participation in four domains: domestic chores, household maintenance, service to others and social activities. Results: Participants were predominantly female, married, educated, white, and had diffuse SSc. Mean age was 53.7 years and mean disease duration was 9.9 years. On the AAP, participation was significantly more frequent for domestic chores than for household maintenance, service to others, and social activities. More fatigue (p?<?0.05), disability (p?<?0.001), and fatigue (p?<?0.05) resulted in lower total AAP scores. More fatigue, pain, severe gastrointestinal symptoms, and depression related to lower household maintenance scores, while the presence of ulcers and more disability and depression were associated with lower domestic chores scores. Conclusions: Participation in life situations in persons with SSc is related to higher disability, depression, and severity of disease symptoms. Interventions to address the disability, depression and symptoms may increase participation.

• Implications for Rehabilitation

• People with systemic sclerosis (SSc) have restrictions in participation including domestic chores, household maintenance, service to others compared to a normative sample.

• For practitioners, these findings show the need to assess participation in addition to impairments and activity limitations in persons with SSc.

• The Adelaide Activities Profile could be used to measure participation.

• Our findings also suggest that interventions addressing fatigue, disability and depression, may improve participation.

     

The discordance between subjectively and objectively measured physical function in women with fibromyalgia: association with catastrophizing and self-efficacy cognitions. The al-Ándalus project

Purpose: People with fibromyalgia experience a disagreement between patient-reported (i.e., subjective) and performance-based (i.e., objective) status. This study aimed to (i) corroborate the discordance between subjectively and objectively measured physical function and (ii) examine whether catastrophizing (worrying, pain magnifying, and helpless cognitions) and self-efficacy (believing capable to manage pain) are independently associated with this discordance.

Methods: This population-based cross-sectional study included 405 women with fibromyalgia and 193 age-matched female controls. Participants completed the Pain Catastrophizing Scale, Chronic Pain Self-efficacy Scale, and physical functioning subscales of the Revised Fibromyalgia Impact Questionnaire and Short Form-36 (SF-36) health survey. Objective physical function was measured with the Senior Fitness Test battery. Subjective and objective physical functions were expressed as deviation from the general population in standard deviation (SD) units using means and SD of the control group.

Results: In fibromyalgia, subjective physical function was worse than objective physical function (p?Conclusions: Subjective physical function is more impaired than objective physical function in fibromyalgia, yet both are markedly impaired. Catastrophizing cognitions are associated with this discordance. In particular, high catastrophizing may promote a feeling of reduced ability to do meaningful activities of daily living (i.e., restrictions) that people with fibromyalgia are actually able to. Therefore, catastrophizing should be assessed and potentially targeted when focusing on improving physical function in fibromyalgia.

• Implications for rehabilitation

• Rehabilitation should focus on physical exercise programs to help women with fibromyalgia to improve their reduced physical function.

• In rehabilitation settings, physical function of people with fibromyalgia should be evaluated by both subjective and objective assessments to fully understand physical functioning and to test the existence of discordance between both assessments.

• In case of a large discordance between subjective and objective physical function, a physical exercise program might be better complemented with cognitive management techniques to reduce catastrophizing and subjective physical dysfunction.

• When people with fibromyalgia experience high levels of catastrophizing, subjective assessments seem to be poor indicators of physical function.

     

Enhanced life-role participation in response to comprehensive gait training in chronic stroke survivors*

Purpose: Intensive gait training can produce improvements in gait and function (> 6 months after stroke); findings are mixed for enhanced life role participation. Therefore, it is unclear if improved gait and function translate into life role participation gain. Our objective was to evaluate whether intensive gait therapy can produce significant improvements in life role participation for chronic stroke survivors. Methods: In conjunction with a clinical gait training trial, we conducted a secondary analysis for a 44-member cohort with stroke (>6 months). Gait training interventions included exercise, body weight supported treadmill training (BWSTT), over-ground gait training, and functional electrical stimulation (FES) for 1.5 h/day, 4 days/wk for 12 weeks. Study measures included Tinetti Gait (TG) (gait impairment), Functional Independence Measure (FIM, function), Stroke Impact Scale Subscale of Life Role Participation (SISpart), and Craig Handicap Assessment & Reporting Technique (CHART, life-role participation). Analyses included Wilcoxon Signed Rank Test and PLUM Regression Model. Results: Gait interventions produced significant improvement in CHART (p = 0.020), SISpart (p = 0.011), FIM (p < 0.0001), and Tinetti Gait (p < 0.0001). Age, gender and time since stroke did not predict response to treatment. Conclusions: Intensive, multi-modal, long-duration gait therapy resulted in significant gain in life-role participation, according to a relatively comprehensive, homogeneous measure.

Implications for Rehabilitation

• It is important to measure life role participation in rehabilitation intervention studies, and using a homogenous measure of life role participation provides clear results.

• Intensive gait training produced a significant improvement in life role participation in the chronic phase after stroke.

• Functional electrical stimulation (FES) had no significant additive effect on life role participation during the treatment phase, but FES did have an additive effect during the follow-up period, in enhancing life role participation beyond that obtained using an identical comprehensive gait training intervention without FES.

     

Impact of depression following a stroke on the participation component of the International Classification of Functioning,Disability and Health

Purpose: To assess the impact of post-stroke depression on the participation component of the International Classification of Functioning, Disability and Health (ICF).

Method: Thirty-five stroke survivors with chronic hemiparesis were divided into two groups: those with and without depression. The Geriatric Depression Scale (GDS) was used for the analysis of depressive symptoms. Participation was analysed using the Stroke Specific Quality of Life scale. The Mann–Whitney test was used to compare the participation scores between the two groups. Spearman’s correlation coefficients were calculated to determine the strength of the association between the assessment tools. Simple linear regression was used to determine the impact of depression on participation. An alpha risk of 0.05 was considered indicative of statistical significance.

Results: The group with depression had low participation scores (p?=?0.04). A statistically significant negative correlation of moderate magnitude was found between depression and participation (r?= ?0.6; p ?=?0.04). The linear regression model demonstrated that depression is a moderate predictor of participation (r²?=?0.51; p?=?0.001).

Conclusions: Depression is a moderate predictor of participation among stroke survivors, explaining 51% of the decline of this aspect. Thus, depression should be diagnosed, monitored and treated to ensure a better prognosis regarding social participation following a stroke.

• Implications for Rehabilitation

• Individuals with post-stroke depression experience a lower degree of social participation.

• Depression explains 51% of the decline in participation following a stroke.

• The present findings can serve as a basis to assist healthcare professionals involved in the rehabilitation of stroke survivors and can assist in the establishment of adequate treatment plans in stroke rehabilitation.

     

The construct validity of the Dutch version of the activity card sort

Purpose: Establishing construct validity of the ACS-NL in individuals with Parkinson’s disease (PD).

Method: Discriminative validity was established in 191 community-dwelling individuals with PD using an extreme groups design (Hoehn and Yahr stages 1 and 3). Convergent validity was determined by relating the performance scores of the ACS-NL to the scores of the Canadian Occupational Performance Measure (COPM) and the Parkinson’s Disease Questionnaire (PDQ-39) scores, and relating ACS-NL satisfaction scores to the COPM scores and to the Utrecht Scale for Evaluation of Rehabilitation Participation (USER-P).

Results: The ACS-NL discriminated between individuals with PD with H&;Y stages 1 and 3 (U?=?524.5, Z?=??5.453). ACS-NL performance scores correlated weakly with COPM scores (r?=?(0).19) and moderately with PDQ-39 scores (r?=?0.44–0.55). The ACS-NL satisfaction scores correlated weakly with COPM scores (r?= 0.23), and moderately with USER-P scores (r?≥?0.40).

Conclusions: This study contributed to the validation of the ACS-NL. The assessment enhances the possibility of monitoring participation in activities in individuals with PD.

• Implications for Rehabilitation

• The ACS-NL appears to hold good potential for use in the assessment of participation in activities in individuals with PD.

• The ACS-NL has added value parallel to administration of other instruments measuring participation (COPM) and quality of life (PDQ-39).

• This study demonstrates the capacity of the ACS to measure a unique construct of participation and helps to improve the psychometric properties and administration of the ACS-NL in practice.

     

Deciphering participation: an interpretive synthesis of its meaning and application in rehabilitation

Abstract

Purpose: Participation is widely recognized as an important outcome for rehabilitation. However, it lacks a universally accepted definition. The purpose of this review is to synthesize the literature about participation in rehabilitation in order to clarify the term and increase its usefulness for rehabilitation providers and researchers.

Methods: We undertook an interpretive synthesis of the literature, drawing from a broad and varied selection of the vast number of publications on the subject of participation. The search and analysis was iterative and continued until saturation of themes was achieved.

Results and Conclusions: Seventy-six articles were included in our analysis. We argue that three essential dimensions – performance, subjective experience, and interpersonal connection – constitute participation. We further divide participation into community-based and interventional contexts. Interventional participation is circumscribed by the treatment setting, whereas community-based encompasses all other areas. Participation in either interventional or community-based contexts is largely determined by the available opportunities from which a person can choose, with such opportunities affected by conditions that are either internal or external to the individual. As defined in this framework, participation is not inherently good or bad; rather, its effect is determined by a person’s unique life circumstances and the impact may not always be apparent. We posit this model as a resource for future research as well as clinical reasoning.

• Implications for Rehabilitation

• The often tacit assumption that increasing participation is a desirable outcome needs to be challenged and considered in each patient’s life situation.

• Treatment settings constitute a unique context in which patients participate.

• Intervention goals should be clearly connected with patients’ personal goals for community-based participation.