Involuntary care - capturing the experience of people with dementia in nursing homes. A concept mapping study.

OBJECTIVE: To avoid restraints and involuntary care caregivers should be aware if and how a patient resists care. This article focuses on behavioural expressions of people with severe dementia in nursing homes that are interpreted by their formal and informal caregivers as possible expressions of their experience of involuntary care. METHOD: Concept mapping was used, following five steps: (1) brainstorming, (2) rating, (3) sorting, (4) statistical analysis & visual representation and (5) interpretation. Specialists (n = 12), nurses (n = 23) and relatives (n = 13) participated in separate groups . RESULTS: The views generated are grouped into clusters of behaviour, presented in graphic charts for each of the respondent groups. The large variety of behavioural symptoms includes, in all groups, not only the more obvious and direct behavioural expressions like aggression, resistance and agitation, but also more subtle behaviour such as sorrow, general discomfort or discontent. CONCLUSION(S): In the interpretation of behavioural symptoms of people with severe dementia it is important to take into account the possibility of that person experiencing involuntary care. Increased awareness and understanding of the meaning and consequences of the behavioural expressions is an important step in improving dementia care by avoiding restraints and involuntary care to its maximum.

The burden of neck pain: its meaning for persons with neck pain and healthcare providers, explored by concept mapping.

PURPOSE: To empirically define the concept of burden of neck pain. The lack of a clear understanding of this construct from the perspective of persons with neck pain and care providers hampers adequate measurement of this burden. An additional aim was to compare the conceptual model obtained with the frequently used Neck Disability Index (NDI). METHODS: Concept mapping, combining qualitative (nominal group technique and group consensus) and quantitative research methods (cluster analysis and multidimensional scaling), was applied to groups of persons with neck pain (n = 3) and professionals treating persons with neck pain (n = 2). Group members generated statements, which were organized into concept maps. Group members achieved consensus about the number and description of domains and the researchers then generated an overall mind map covering the full breadth of the burden of neck pain. RESULTS: Concept mapping revealed 12 domains of burden of neck pain: impaired mobility neck, neck pain, fatigue/concentration, physical complaints, psychological aspects/consequences, activities of daily living, social participation, financial consequences, difficult to treat/difficult to diagnose, difference of opinion with care providers, incomprehension by social environment, and how person with neck pain deal with complaints. All ten items of the NDI could be linked to the mind map, but the NDI measures only part of the burden of neck pain. CONCLUSION: This study revealed the relevant domains for the burden of neck pain from the viewpoints of persons with neck pain and their care providers. These results can guide the identification of existing measurements instruments for each domain or the development of new ones to measure the burden of neck pain.

Comparison of the Utrecht Scale for Evaluation of Rehabilitation-Participation with the ICF Measure of Participation and Activities Screener and the WHO Disability Assessment Schedule II in persons with spinal cord injury.

OBJECTIVE: To validate the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in persons with spinal cord injury (SCI) using 2 International Classification of Functioning, Disability and Health (ICF)-based instruments: the ICF Measure of Participation and Activities-Screener (IMPACT-S) and the World Health Organization Disability Assessment Schedule II (WHODAS II). DESIGN: Validation study. Score distributions, internal consistency, and concurrent and discriminant validity were evaluated. SETTING: The community. PARTICIPANTS: Convenience sample of persons (N=157) with long-term SCI living in The Netherlands. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: USER-Participation, IMPACT-S, and WHODAS II. RESULTS: No instruments showed floor effects, and 3 out of 6 WHODAS II domains showed ceiling effects. Most scores showed adequate internal consistency (α≥.70), except for the USER-Participation frequency scale (.51) and 2 WHODAS II domains (.58-.60). Spearman correlation coefficients between the segregate USER-Participation scales were <.60 (range, .39-.46), showing that they cover separate aspects of participation. Concurrent validity of the USER-Participation was shown because >75% (83.3%) of the 24 hypotheses (Spearman correlation coefficients above or below .60) with the other measurement instruments were confirmed. Concurrent validity between the IMPACT-S and WHODAS II was not shown (53.8% of 13 hypotheses confirmed). All scores except 4 WHODAS II domains showed significant differences in participation between persons with paraplegia and tetraplegia. CONCLUSIONS: The USER-Participation showed generally satisfactory psychometric properties in Dutch persons with long-term SCI living in the community. The IMPACT-S showed the best psychometric properties, and the WHODAS II showed less favorable results. Future research on the USER-Participation should focus on validation in other languages and different diagnostic groups.

Participation in the chronic phase of stroke.

BACKGROUND: Participation is a multidimensional concept, consisting of an objective and a subjective dimension. Many studies have focused on determinants of only 1 dimension of participation post stroke. OBJECTIVE: To describe participation (both objective and subjective) and to determine how physical and cognitive independence and subjective complaints (pain, fatigue, and mood) influence participation in community-dwelling stroke survivors in the Netherlands. METHODS: The Utrecht Scale for Evaluation of Rehabilitation (USER) measures physical and cognitive independence and subjective complaints. USER-Participation measures 3 dimensions of participation: frequency (objective perspective), restrictions (subjective perspective), and satisfaction (subjective perspective). Spearman correlations and backward linear regression analyses were used to analyze associations between the 3 USER-Participation scores with demographics, stroke characteristics, physical and cognitive independence, and subjective complaints. RESULTS: Of the 111 participants, 48.5% returned to work post stroke, but mostly for only 1 to 16 hours a week. Experienced participation restrictions were most prevalent in physical exercise, chores in/around the house, housekeeping, and outdoor activities. On average, participants were relatively satisfied with their participation, but dissatisfaction occurred in cognition, activities outdoors, and work/housekeeping. Regression analysis revealed that objective participation was determined by physical and cognitive independence, age, and education, whereas subjective participation was determined by physical and cognitive independence, fatigue, and mood. CONCLUSIONS: Most participants experienced participation problems, despite relatively good physical recovery. In addition to physical and cognitive factors, subjective complaints of persons with stroke should be addressed in the rehabilitation program.

The effect of surface electric stimulation of the gluteal muscles on the interface pressure in seated people with spinal cord injury.

OBJECTIVE: To study effects of surface electric stimulation of the gluteal muscles on the interface pressure in seated persons with spinal cord injury (SCI). DESIGN: One session in which alternating and simultaneous surface electric stimulation protocols were applied in random order. SETTING: Research laboratory of a rehabilitation center. PARTICIPANTS: Thirteen subjects with SCI. INTERVENTION: Surface electric stimulation of the gluteal muscles. MAIN OUTCOME MEASURES: Interface pressure, maximum pressure, pressure spread, and pressure gradient for the stimulation measurement. Variables were compared using 2-tailed paired t tests. RESULTS: Alternating and simultaneous stimulation protocol caused a significant (P<.01) decrease in interface pressure (-17+/-12 mmHg, -19+/-14 mmHg) and pressure gradient (-12+/-11 mmHg, -14+/-12 mmHg) during stimulation periods compared with rest periods. There was no significant difference in effects between the 2 protocols. CONCLUSIONS: Surface electric stimulation of the gluteal muscles in persons with SCI causes a decrease in interface pressure. This might restore blood flow in compressed tissue and help prevent pressure ulcers.

Responsiveness of two participation measures in an outpatient rehabilitation setting.

OBJECTIVE: The responsiveness of a new participation measure, the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) was compared with that of the Impact on Particpation and Autonomy (IPA). Furthermore, the concurrent validity of these two measures was assessed. METHOD: Participants were patients with brain injury or neuromuscular disease, who received occupational therapy as part of a multidisciplinary outpatient rehabilitation programme. They completed the IPA and the USER-Participation at the start and end of the programme, and at three-month follow-up. Responsiveness was analysed using the effect size (ES) and the standardized response mean (SRM). RESULTS: Responsiveness figures were small to moderate (-0.4 to 0.5) and similar for the IPA and the USER-Participation. The USER-Participation showed a consistent result, with Frequency scores declining and Restriction and Satisfaction scores inclining over time, and the IPA showed mixed results, with the different domain scores both inclining and declining over time. Correlations between IPA and USER-Participation scales were all significant, but by far strongest for the USER-Participation Satisfaction scale (-0.64 to -0.81). CONCLUSION: The USER-Participation was at least as responsive as the IPA. Further, satisfaction with participation as measured with the USER-Participation is highly similar to the concept of autonomy in participation as measured with the IPA.

Validity of the utrecht scale for evaluation of rehabilitation-participation.

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.

Responsiveness of four participation measures to changes during and after outpatient rehabilitation.

OBJECTIVE: To assess the responsiveness of 4 participation measures. DESIGN: Longitudinal study with repeated measurements at the start (t1) and at the end (t2) of a multidisciplinary out-patient rehabilitation programme, and at 4 months follow-up (t3). SUBJECTS: Outpatients with different diagnoses (n=395) from 5 rehabilitation centres in The Netherlands. METHODS: Measures were the Frenchay Activities Index (FAI), the Participation subscale of the ICF Measure of Participation and Activities Screener (IMPACT-SP), the Participation Scale, and the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation). Responsiveness was analysed using the effect size and the standardized response mean. RESULTS: Comparing scores at t1 and t2, the standardized response mean was 0.54 for the USER-Participation Restriction scale, 0.41 for the FAI, 0.40 for the IMPACT-SP, 0.39 for the USER-Participation Satisfaction scale, -0.36 for the Participation Scale, and 0.21 for the USER-Participation Frequency scale. Effect size values were generally somewhat smaller than standardized response mean values. Effect size and standardized response mean values were negligible between t2 and t3. Responsiveness parameters varied between diagnostic groups, with participants with acquired brain injury showing the largest change and participants with neuro-muscular disease or chronic pain showing least change. CONCLUSION: Overall and across the different diagnostic groups, the USER-Participation Restriction scale showed the best responsiveness.

Reproducibility of three self-report participation measures: The ICF Measure of Participation and Activities Screener, the Participation Scale, and the Utrecht Scale for Evaluation of Rehabilitation-Participation.

OBJECTIVE: To assess the reproducibility of 3 participation measures. DESIGN: Repeated administration of a postal questionnaire with a 2-week interval. PARTICIPANTS: Outpatients (n = 47) from 2 rehabilitation centres and a university hospital in The Netherlands. METHODS: Measures were the ICF Measure of Participation and Activities Screener (IMPACT-S), the Participation Scale, and the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P). Test-retest reliability was analysed using Cohen's weighted kappa and the intraclass correlation coefficient (ICC). Agreement was expressed as the standard error of measurement and the smallest detectable change (SDC), substantiated as the ratio between the SDC and the standard deviation (SDC/SD). RESULTS: ICC values of the IMPACT-S were 0.54-0.90 for the scale scores, 0.92 and 0.74 for sub-total scores Activities and Participation, and 0.88 for the total score. The ICC of the Participation Scale was 0.82. The ICC of the USER-P was 0.65 for the Frequency scale, 0.85 for the Restrictions scale, and 0.84 for the Satisfaction scale. The SDC/SD ratios for all measures were small (0.11-0.28) at the group level, but large (0.78-1.91) at the individual level. Most participants found all measures relevant and easy to complete. CONCLUSION: All 3 measures showed generally satisfying reproducibility and were acceptable to the participants.