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1.
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.  相似文献   

2.
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.

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3.
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.

  相似文献   

4.
Abstract

Purpose: To summarize measurement instruments used to evaluate activity limitations and participation restrictions in patients with chronic fatigue syndrome (CFS) and review the psychometric properties of these instruments. Method: General information of all included measurement instruments was extracted. The methodological quality was evaluated using the COSMIN checklist. Results of the measurement properties were rated based on the quality criteria of Terwee et?al. Finally, overall quality was defined per psychometric property and measurement instrument by use of the quality criteria by Schellingerhout et?al. Results: A total of 68 articles were identified of which eight evaluated the psychometric properties of a measurement instrument assessing activity limitations and participation restrictions. One disease-specific and 37 generic measurement instruments were found. Limited evidence was found for the psychometric properties and clinical usability of these instruments. However, the CFS-activities and participation questionnaire (APQ) is a disease-specific instrument with moderate content and construct validity. Conclusion: The psychometric properties of the reviewed measurement instruments to evaluate activity limitations and participation restrictions are not sufficiently evaluated. Future research is needed to evaluate the psychometric properties of the measurement instruments, including the other properties of the CFS-APQ. If it is necessary to use a measurement instrument, the CFS-APQ is recommended.
  • Implications for Rehabilitation
  • Chronic fatigue syndrome (CFS).

  • Chronic fatigue syndrome causes activity limitations and participation restrictions in one or more areas of life.

  • Standardized, reliable and valid measurement instruments are necessary to identify these limitations and restrictions.

  • Currently, no measurement instrument is sufficiently evaluated with persons with CFS.

  • If a measurement instrument is needed to identify activity limitations and participation restrictions with persons with CFS, it is recommended to use the CFS-APQ in clinical practice and scientific research.

  相似文献   

5.
Purpose: There is still a need for a generic participation instrument that measures both objective and subjective participation in adults living in the community and that is feasible for use in rehabilitation practice. The Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) was developed to satisfy this need, comprising 31 items in three scales: Frequency, Restrictions and Satisfaction. The aim of this study was to examine the validity of this measure. Methods: Cross-sectional study involving former rehabilitation outpatients from five rehabilitation facilities in the Netherlands (n?=?395). The Frenchay Activities Index (FAI), the participation subtotal score of the ICF Measure of Participation and Activities Screener (IMPACT-SP) and the Participation Scale were included as reference measures. Results: Internal consistency of the USER-Participation scales was satisfactory (α 0.70–0.91). Spearman correlations between these scales were between 0.36 and 0.52. Concurrent validity was shown by strong correlations between the Frequency scale and the FAI (0.59), the Restrictions scale and the IMPACT-SP (0.75) and the Satisfaction scale and the Participation Scale (?0.73). Discriminant validity was shown by significant differences in USER-Participation scores between participants with different levels of independence and between participants with different health conditions. Conclusion: The USER-Participation appears to be a valid measure to rate objective and subjective participation in persons with physical disabilities.

Implications for Rehabilitation

  • The Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) is a new brief generic instrument to rate objective and subjective participation.

  • The USER-Participation comprises 31 items in three scales: Frequency, Restrictions and Satisfaction.

  • The USER-Participation appears to be a valid measure to rate objective and subjective participation in persons with physical disabilities.

  相似文献   

6.
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.

  相似文献   

7.
8.
9.
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.

  相似文献   

10.
11.
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.

  相似文献   

12.
Abstract

Purpose: A review of existing measurement instruments was conducted to examine their suitability to measure disability prevalence and assess quality of life, protection of disability rights and community participation by people with disabilities, specifically within the context of development programs in low and middle-income countries. Methods: From a search of PubMed and the grey literature, potentially relevant measurement instruments were identified and examined for their content and psychometric properties, where possible. Criteria for inclusion were: based on the WHO’s International Classification of Functioning Disability and Health (ICF), used quantitative methods, suitable for population-based studies of disability inclusive development in English and published after 1990. Characteristics of existing instruments were analysed according to components of the ICF and quality of life domains. Results: Ten instruments were identified and reviewed according to the criteria listed above. Each version of instruments was analysed separately. Only three instruments included a component on quality of life. Domains from the ICF that were addressed by some but not all instruments included the environment, technology and communication. Conclusion: The measurement instruments reviewed covered the range of elements required to measure disability-inclusion within development contexts. However no single measurement instrument has the capacity to measure both disability prevalence and changes in quality of life according to contemporary disability paradigms. The review of measurement instruments supports the need for developing an instrument specifically intended to measure disability inclusive practice within development programs.
  • Implications for Rehabilitation
  • Surveys and tools are needed to plan disability inclusive development.

  • Existing measurement tools to determine prevalence of disability, wellbeing, rights and access to the community were reviewed.

  • No single validated tool exists for population-based studies, uses quantitative methods and the components of the ICF to measure prevalence of disability, well-being of people with disability and their access to their communities.

  • A measurement tool that reflects the UNCRPD and addresses all components of the ICF is needed to assist in disability inclusive development, especially in low and mid resource countries.

  相似文献   

13.
Abstract

Purpose: Participation throughout one’s life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD). Methods: The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD. Results: The interviews revealed participation-facilitating strategies relating to the children’s/adolescent’s proximal environment, such as “Availability and acceptability of the activity”, “Good knowledge about the child” and a “A positive attitude of people close to the child”, as well as strategies related to the children/adolescents themselves: “Sense of belonging”, “Possible for the child/adolescent to understand”, “Opportunities to influence” and “Feeling of being needed”. Conclusions: Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD.
  • Implications for Rehabilitation
  • Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD).

  • Examples of strategies for the child’s/adolescents’ proximal environment include “good knowledge about the child/adolescent”, and, for the child/adolescent, include creating “sense of belonging” and “opportunities to influence”.

  • Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities.

  • People in the child’s/adolescent’s proximal environment need to set the scene for participation.

  相似文献   

14.
Purpose: To explore how the meaning of exercise and other factors interact and influence the exercise behaviour of individuals with Parkinson’s disease (PD) enrolled in a 6-month minimally supervised exercise program to prevent falls, regardless of whether they completed the prescribed exercise or not. Method: This qualitative study utilised in-depth semi-structured interviews analysed using grounded theory methodology. Results: Four main themes were constructed from the data: adapting to change and loss, the influence of others, making sense of the exercise experience and hope for a more active future. Participation in the PD-specific physiotherapy program involving group exercise provided an opportunity for participants to reframe their identity of their “active” self. Three new influences on exercise participation were identified and explored: non-motor impairments of apathy and fatigue, the belief in a finite energy quota, and the importance of feedback. A model was developed incorporating the themes and influences to explain decision-making for exercise participation in this group. Conclusion: Complex and interacting issues, including non-motor impairments, need to be considered in order to enhance the development and ongoing implementation of effective exercise programmes for people with PD.
  • Implications for Rehabilitation
  • Exercise participation can assist individuals to reframe their identity as they are faced with losses associated with Parkinson’s disease and ageing.

  • Non-motor impairments of apathy and fatigue may influence exercise participation in people with Parkinson’s disease.

  • Particular attention needs to be paid to the provision of feedback in exercise programs for people with Parkinson’s disease as it important for their decision-making about continuing exercise.

  相似文献   

15.
Abstract

Social support can improve participation in everyday activities among older adults with chronic health conditions, but the specific types of support that are needed are unclear. Purpose: This study examined the types of social support that most strongly predict participation in everyday activities. Method: Two hundred and twenty-seven participants completed a self-administered cross-sectional survey. The sample included adults aged 60 years or more with arthritis, diabetes, chronic obstructive pulmonary disease and/or heart disease. Participation was defined as satisfaction with participation in 11 life areas. Social support was defined as availability of tangible, affectionate, emotional/informational and positive social interaction support. Results: Multiple regression analyses showed that participants who perceived greater tangible support and positive social interaction support had higher satisfaction with participation than participants with lower levels of these types of support. Conclusions: Targeting and developing tangible and social interaction support may help to facilitate satisfaction with participation for older adults with chronic conditions. Creating networks for companionship appears equally as important as providing support for daily living needs.
  • Implications for Rehabilitation
  • Varying types of social support can improve participation in older adults with chronic health conditions.

  • Tangible support and positive social interaction support are the strongest predictors of participation.

  • Creating networks for companionship may be equally as important as providing support for daily living needs.

  相似文献   

16.
Purpose: Our aims were to determine (1) the impact of aging versus combined aging and disease on participation and (2) participation before and after a 12-week, Adapted Tango dance intervention (AT) in older adults with and without Parkinson’s disease (PD).

Methods: Participant responses to open and closed-ended questions on the Impact on Participation and Autonomy questionnaire (IPA) were recorded before, one-week-after, and three-months after 20 lessons of AT. Twenty-five older individuals with PD and 63 older adults without PD were initially enrolled and assessed, and 44 older adults and 22 individuals with PD finished the program with post-testing.

Results: Thematic analysis revealed major themes of difficulty with mobility, transportation and financial management, feelings of being forced to limit activities, and interest in work or volunteering for both groups at baseline and post-test. At post-test, additional emphasis on resilience in the face of challenges was noted. No differences were noted between groups on the IPA subscales at baseline. Quantitative analysis with a 2 (group)?×?3 (time) MANOVA revealed a main effect of time (p?p?p?=?0.073), and Family Role (p?=?0.057).

Conclusions: Adapted Tango improved aspects of participation for these cohorts of older adults with and without PD.
  • Implications for Rehabilitation
  • Both Parkinson’s disease and neurotypical aging can negatively impact participation in life’s activities in older adults.

  • Adapted Tango is an alternative therapy that has improved quality of life and mobility in people with PD and older adults.

  • Quantitative data show that Adapted Tango may improve some aspects of participation for older adults with and without PD.

  • Open-ended responses reveal aging and combined aging and disease-related issues have a lasting impact upon participation.

  相似文献   

17.
Purpose: To explore power wheelchair users’, caregivers’ and clinicians’ perspectives regarding the potential impact of intelligent power wheelchair use on social participation. Methods: Semi-structured interviews were conducted with power wheelchair users (n?=?12), caregivers (n?=?4) and clinicians (n?=?12). An illustrative video was used to facilitate discussion. The transcribed interviews were analyzed using thematic analysis. Results: Three main themes were identified based on the experiences of the power wheelchair users, caregivers and clinicians: (1) increased social participation opportunities, (2) changing how social participation is experienced and (3) decreased risk of accidents during social participation. Conclusion: Findings from this study suggest that an intelligent power wheelchair would enhance social participation in a variety of important ways, thereby providing support for continued design and development of this assistive technology.
  • Implications for Rehabilitation
  • An intelligent power wheelchair has the potential to:

  • Increase social participation opportunities by overcoming challenges associated with navigating through crowds and small spaces.

  • Change how social participation is experienced through “normalizing” social interactions and decreasing the effort required to drive a power wheelchair.

  • Decrease the risk of accidents during social participation by reducing the need for dangerous compensatory strategies and minimizing the impact of the physical environment.

  相似文献   

18.
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.

  相似文献   

19.
Purpose: To develop the Korean version of the Participation and Environment Measure for Children and Youth (KPEM-CY) and examine its psychometric properties.

Method: The PEM-CY was cross-culturally translated into Korean using a specific guideline: pre-review of participation items, forward/backward translation, expert committee review, pre-test of the KPEM-CY and final review. To establish internal consistency, test–retest reliability and construct validity of the KPEM-CY, 80 parents of children with disabilities aged 5–13 years were recruited in South Korea.

Results: Across the home, school and community settings, 76% of participation items and 29% of environment items were revised to improve their fit with Korean culture. Internal consistency was moderate to excellent (0.67–0.92) for different summary scores. Test–retest reliability was excellent (>0.75) in the summary scores of participation frequency and extent of involvement across the three settings and moderate to excellent (0.53–0.95) in all summary scores at home. Child’s age, type of school and annual income were the factors that significantly influenced specific dimensions of participation and environment across all settings.

Conclusions: Results indicated that the KPEM-CY is equivalent to the original PEM-CY and has initial evidence of reliability and validity for use with Korean children with disabilities.

  • Implications for rehabilitation
  • Because ‘participation’ is a key outcome of the rehabilitation, measuring comprehensive participation of children with disabilities is necessary.

  • The PEM-CY is a parent-report survey measure to assess comprehensive participation of children and youth and environment, which affect their participation, at home, school and in the community.

  • A cross-cultural adaptation process is mandatory to adapt the measurement tool to a new culture or country.

  • The Korean PEM-CY has both reliability and validity and can therefore generate useful clinical data for Korean children with disabilities.

  相似文献   

20.
Abstract

Purpose: To provide a translation and cross-cultural adaptation of the Spinal Cord Independence Measure (SCIM) version III for Spain and to validate the Spanish version of the SCIM III (eSCIM III). Patients and methods: Development of eSCIM III has involved translation, back-translation and assessment of cultural equivalence procedures. eSCIM version III, was administered to 64 patients with spinal cord injury, admitted to our hospital. Investigation of the psychometric characteristics included: (1) study of the inter-rater reliability, (2) internal consistency (Cronbach’s α), (3) validation and confirmation of the correlation between eSCIM III and Functional Independence Measure (FIM), and (4) sensitivity to change. Results: The reliability of eSCIM III showed an intra-class coefficient value >0.97 in the different subscales assessed. Internal consistency of eSCIM III was shown by a Cronbach’s α value of 0.93. The validity of eSCIM III was confirmed by the close correlation with FIM (r?=?0.94, p?<?0.0001). The sensitivity to change of eSCIM III was also confirmed. Conclusions: eSCIM III was found to be culturally equivalent to the original version, as reliability and validity of this tool were demonstrated. It can be used in Spain for functional assessment of patients with spinal cord injury.
  • Implications for Rehabilitation
  • Development of the Spanish version of the Spinal Cord Independence Measure version III.

  • The importance of the adaptation of Spinal Cord Independence Measure (SCIM) is that it guarantees the possibility of measuring the same concept in different cultures and countries.

  • The eSCIM III is the first, specific assessment tool in patients with spinal cord injury adapted for its use in Spain.

  • The eSCIM III is a tool conceptually equivalent to the original version. It has the reliability and validity of SCIM III in order to be used by clinicians.

  相似文献   

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