People with intellectual disabilities (ID) commonly struggle with managing their affairs, while they consider it important to beindependent. This study aimed to gain insight into the perspectives... Show morePeople with intellectual disabilities (ID) commonly struggle with managing their affairs, while they consider it important to beindependent. This study aimed to gain insight into the perspectives of people with ID, legal representatives, and support staff onpromoting independence in this population. Two focus groups were conducted with people with ID (n= 7), two with legal repre-sentatives (n= 13), and three with support staff (n= 17). Topics included the meaning of independence, the current level andneeds of people with ID regarding their independence, and what they perceived as barriers and requirements when wanting to pro-mote independence in this group. Possible outcomes of a greater independence of people with ID were also discussed. Verbatimtranscripts were analyzed qualitatively with a general inductive approach. According to the respondents, people with ID requiresupport from others, but most want to be more independent. Various barriers are experienced when trying to promote indepen-dence. These concern barriers at the level of support staff (e.g., lack of time), family (e.g., taking over tasks), and of the persons withID themselves (e.g., emotional difficulties). When promoting independence in this population, more support and time seem neces-sary, as well as a clear, step-by-step tailored approach and good communication between all parties involved. Last, several advan-tages (e.g., greater self-worth) and risks (e.g., overestimation by others, greater exposure to hazards) were proposed that couldresult from a greater independence of people with ID. As this study showed that people with ID generally want to become moreindependent. This stresses the need for the development of interventions, which could benefit from thefindings from this study. Show less
BackgroundSupport staff of adults with intellectual disability (ID) play an important role in promoting independence in home and community settings. However, little is known about the types of... Show moreBackgroundSupport staff of adults with intellectual disability (ID) play an important role in promoting independence in home and community settings. However, little is known about the types of behaviours staff should use to promote independence and instruments that assess such behaviour do not yet exist. The aim of this study was therefore to develop and initially validate a reliable questionnaire that measures the degree to which support staff display behaviours that promote independence in people with ID. MethodThe Leiden Independence Questionnaire for Support Staff (LIQSS) was constructed to measure the extent to which support staff promote independence in people with ID. The LIQSS was completed by 142 staff members working with people with ID. For the psychometric evaluation of the LIQSS, a principal component analysis was performed with an oblique rotation in all items. Next, the principal component analysis was performed with a forced three‐component extraction, and three sub‐scales were computed. To assess internal consistency, Cronbach's α was calculated for each of the sub‐scales. ResultsThe LIQSS was found to consist of three internally consistent (Cronbach's α was respectively 0.92, 0.79 and 0.76) and meaningful components: (1) communication, agreements and coordination; (2) positive encouragement and tailoring; and (3) supporting independent performance. The final 22 items had factor loadings between 0.44 and 0.91 on their corresponding component and a minimal difference in loading to the other factors of 0.20. ConclusionsThe LIQSS appears to be an instrument with positive face validity and reliability (internal consistency) that assesses the degree to which support staff promote independence in people with ID. To increase the instrument's value for both scientific research and clinical practice, studies should focus on the further validation of the LIQSS. Show less
Background: To help people with intellectual disabilities lead a more independent life, it is important to promote their self- management. This study evaluated the ef-fectiveness of a self-... Show moreBackground: To help people with intellectual disabilities lead a more independent life, it is important to promote their self- management. This study evaluated the ef-fectiveness of a self- management training for people with intellectual disabilities di-rected at independent functioning in daily life.Method: In the training, 17 people with intellectual disabilities worked on personal self- management goals covering a wide range of everyday affairs. Primary outcome measures focused on goal attainment, independence and support needs. Moreover, outcomes regarding psychopathological behaviour and quality of life were explored. Data were collected before and at the start of the training, and 3, 6, 9 and 12 months later.Results: The training contributed to the attainment of self- management goals and to the reduction in support needs (p <0.01). There were no changes in independence, psychopathological behaviour and quality of life.Conclusions: Results indicate that the training supports people with intellectual dis-abilities to self- manage their daily affairs Show less
BackgroundPeople with intellectual disabilities have increasing difficulties managing their daily affairs. This study examined the effectiveness of a staff training, which teaches staff to promote... Show moreBackgroundPeople with intellectual disabilities have increasing difficulties managing their daily affairs. This study examined the effectiveness of a staff training, which teaches staff to promote self-management in people with intellectual disabilities.MethodEffectiveness was assessed with questionnaires addressing clients' (n=26) independence and self-reliance, support needs and challenging behaviour, using a pre-posttest control group design. Additionally, focus groups were conducted with trained staff members 6months after the training.ResultsIn the long term, the intervention group showed a significant increase in independence and self-reliance, in contrast to the comparison group. No effect was found on support needs and challenging behaviour. Trained staff members reported limited benefits of the training, but had noticed changes in their attitude and method of working afterwards.ConclusionsFurther self-management research is required to investigate how independence and self-reliance can be promoted more effectively in this population. Future trainings should carefully consider their content, format, and implementation. Show less
Background: Current evidence for the effectiveness of specialist multidisciplinary programs for burdensome chronic pain and functional somatic syndromes drives the effort to improve approaches,... Show moreBackground: Current evidence for the effectiveness of specialist multidisciplinary programs for burdensome chronic pain and functional somatic syndromes drives the effort to improve approaches, strategies, and delivery modes. It remains unknown to what extent and in what respect serious gaming during the regular outpatient rehabilitation can contribute to health outcomes.Objective: The objectives of our study were to determine the effect of additional serious gaming on (1) physical and emotional functioning in general; (2) particular outcome domains; and (3) patient global impressions of change, general health, and functioning and to determine (4) the dependency of serious gaming effects on adherence.Methods: We conducted a naturalistic quasi-experiment using embedded qualitative methods. The intervention group patients received an additional guided (mindfulness-based) serious gaming intervention during weeks 9-12 of a 16-week rehabilitation program at 2 sites of a Dutch rehabilitation clinic. Simultaneously, 119 control group patients followed the same program without serious gaming at 2 similar sites of the same clinic. Data consisted of 10 semistructured patient interviews and routinely collected patient self-reported outcomes. First, multivariate linear mixed modeling was used to simultaneously estimate a group effect on the outcome change between weeks 8 and 16 in 4 primary outcomes: current pain intensity, fatigue, pain catastrophizing, and psychological distress. Second, similar univariate linear mixed models were used to estimate effects on particular (unstandardized) outcomes. Third, secondary outcomes (ie, global impression of change, general health, functioning, and treatment satisfaction) were compared between the groups using independent t tests. Finally, subgroups were established according to the levels of adherence using log data. Influences of observed confounding factors were considered throughout analyses.Results: Of 329 eligible patients, 156 intervention group and 119 control group patients (N= 275) with mostly chronic back pain and concomitant psychosocial problems participated in this study. Of all, 119 patients played >= 75% of the game. First, the standardized means across the 4 primary outcomes showed a significantly more favorable degree of change during the second part of the treatment for the intervention group than for the control group (beta=-0.119, SE= 0.046, P=. 009). Second, the intervention group showed a greater outcome change in depressive mood (b=-2.748, SE= 1.072, P=. 011) but not in "insufficiency" or concentration problems. Third, no significant group effects on secondary outcomes were found. Fourth, adherence was generally high and invariant.Conclusions: The findings of this study suggest a very small favorable average effect on relevant health outcomes of additional serious gaming during multidisciplinary rehabilitation. The indication that serious gaming could be a relatively time-efficient component warrants further research into if, when, how, and for which patients serious gaming could be cost-effective in treatment and why. Show less
People with intellectual disabilities (ID) commonly struggle with managing their affairs, while they consider it important to be independent. This study aimed to gain insight into the perspectives... Show morePeople with intellectual disabilities (ID) commonly struggle with managing their affairs, while they consider it important to be independent. This study aimed to gain insight into the perspectives of people with ID, legal representatives, and support staff on promoting independence in this population. Two focus groups were conducted with people with ID (n = 7), two with legal representatives (n = 13), and three with support staff (n = 17). Topics included the meaning of independence, the current level and needs of people with ID regarding their independence, and what they perceived as barriers and requirements when wanting to promote independence in this group. Possible outcomes of a greater independence of people with ID were also discussed. Verbatim transcripts were analyzed qualitatively with a general inductive approach. According to the respondents, people with ID require support from others, but most want to be more independent. Various barriers are experienced when trying to promote independence. These concern barriers at the level of support staff (e.g., lack of time), family (e.g., taking over tasks), and of the persons with ID themselves (e.g., emotional difficulties). When promoting independence in this population, more support and time seem necessary, as well as a clear, step-by-step tailored approach and good communication between all parties involved. Last, several advantages (e.g., greater self-worth) and risks (e.g., overestimation by others, greater exposure to hazards) were proposed that could result from a greater independence of people with ID. As this study showed that people with ID generally want to become more independent. This stresses the need for the development of interventions, which could benefit from the findings from this study. Show less
Computer-based interventions target improvement of physical and emotional functioning in patients with chronic pain and functional somatic syndromes. However, it is unclear to what extent which... Show moreComputer-based interventions target improvement of physical and emotional functioning in patients with chronic pain and functional somatic syndromes. However, it is unclear to what extent which interventions work and for whom. This systematic review and meta-analysis (registered at PROSPERO, 2016: CRD42016050839) assesses efficacy relative to passive and active control conditions, and explores patient and intervention factors. Controlled studies were identified from MEDLINE, EMBASE, PsychInfo, Web of Science, and Cochrane Library. Pooled standardized mean differences by comparison type, and somatic symptom, health-related quality of life, functional interference, catastrophizing, and depression outcomes were calculated at post-treatment and at 6 or more months follow-up. Risk of bias was assessed. Sub-group analyses were performed by patient and intervention characteristics when heterogeneous outcomes were observed. Maximally, 30 out of 46 eligible studies and 3,387 participants were included per meta-analysis. Mostly, internet-based cognitive behavioral therapies were identified. Significantly higher patient reported outcomes were found in comparisons with passive control groups (standardized mean differences ranged between -.41 and -.18), but not in comparisons with active control groups (SMD = -.26 - -.14). For some outcomes, significant heterogeneity related to patient and intervention characteristics. To conclude, there is a minority of good quality evidence for small positive average effects of computer-based (cognitive) behavior change interventions, similar to traditional modes. These effects may be sustainable. Indications were found as of which interventions work better or more consistently across outcomes for which patients. Future process analyses are recommended in the aim of better understanding individual chances of clinically relevant outcomes. Show less
Background: Current evidence for the effectiveness of specialist multidisciplinary programs for burdensome chronic pain and functional somatic syndromes drives the effort to improve approaches,... Show moreBackground: Current evidence for the effectiveness of specialist multidisciplinary programs for burdensome chronic pain and functional somatic syndromes drives the effort to improve approaches, strategies, and delivery modes. It remains unknown to what extent and in what respect serious gaming during the regular outpatient rehabilitation can contribute to health outcomes.Objective: The objectives of our study were to determine the effect of additional serious gaming on (1) physical and emotional functioning in general; (2) particular outcome domains; and (3) patient global impressions of change, general health, and functioning and to determine (4) the dependency of serious gaming effects on adherence.Methods: We conducted a naturalistic quasi-experiment using embedded qualitative methods. The intervention group patients received an additional guided (mindfulness-based) serious gaming intervention during weeks 9-12 of a 16-week rehabilitation program at 2 sites of a Dutch rehabilitation clinic. Simultaneously, 119 control group patients followed the same program without serious gaming at 2 similar sites of the same clinic. Data consisted of 10 semistructured patient interviews and routinely collected patient self-reported outcomes. First, multivariate linear mixed modeling was used to simultaneously estimate a group effect on the outcome change between weeks 8 and 16 in 4 primary outcomes: current pain intensity, fatigue, pain catastrophizing, and psychological distress. Second, similar univariate linear mixed models were used to estimate effects on particular (unstandardized) outcomes. Third, secondary outcomes (ie, global impression of change, general health, functioning, and treatment satisfaction) were compared between the groups using independent t tests. Finally, subgroups were established according to the levels of adherence using log data. Influences of observed confounding factors were considered throughout analyses.Results: Of 329 eligible patients, 156 intervention group and 119 control group patients (N= 275) with mostly chronic back pain and concomitant psychosocial problems participated in this study. Of all, 119 patients played >= 75% of the game. First, the standardized means across the 4 primary outcomes showed a significantly more favorable degree of change during the second part of the treatment for the intervention group than for the control group (beta=-0.119, SE= 0.046, P=. 009). Second, the intervention group showed a greater outcome change in depressive mood (b=-2.748, SE= 1.072, P=. 011) but not in "insufficiency" or concentration problems. Third, no significant group effects on secondary outcomes were found. Fourth, adherence was generally high and invariant.Conclusions: The findings of this study suggest a very small favorable average effect on relevant health outcomes of additional serious gaming during multidisciplinary rehabilitation. The indication that serious gaming could be a relatively time-efficient component warrants further research into if, when, how, and for which patients serious gaming could be cost-effective in treatment and why. Show less
Wegen, K.S.; Van Dijke, A.; Aalbers, A.; Zedlitz, A.M.E.E. 2017
Objectives: To perform a systematic review of the literature to determine which questionnaires are currently available to measure family satisfaction with care on the ICU and to provide an overview... Show moreObjectives: To perform a systematic review of the literature to determine which questionnaires are currently available to measure family satisfaction with care on the ICU and to provide an overview of their quality by evaluating their psychometric properties. Data Sources: We searchedPubMed, Embase, The Cochrane Library, Web of Science, PsycINFO and CINAHL from inception until October 30, 2013. Study Selection: Experimental and observational research articles reporting on questionnaires on family satisfaction and/or needs in the ICU were included. Two reviewers determined eligibility. Data Extraction: Design, application mode, language and the number of studies of the tools were registered. With this information the tools were globally categorized according to validity and reliability: level I (well established quality), II (approaching well-established quality), III (promising quality) or IV (unconfirmed quality). The quality of the highest level (I) tools was assessed by further examination of the psychometric properties and sample size of the studies. Data Synthesis: The search detected 3,655 references, from which 135 articles were included. We found 27 different tools that assessed overall or circumscribed aspects of family satisfaction with ICU care. Only four questionnaires were categorized as level I: the CCFNI, the SCCMFNA, the CCFSS and the FS-ICU. Studies on these questionnaires were of good sample size (>n=100) and showed adequate data on face/content validity and internal consistency. Studies on the CCFNI, the FS-ICU also contained sufficient data on inter-rater/test-retest reliability, responsiveness and feasibility. Generally, data on measures of central tendency and sensitivity to change were scarce. Conclusions: Of all the questionnaires found, the CCFNI and the FS-ICU were the most reliable and valid in relation to their psychometric properties. However, a universal “best questionnaire” is indefinable because it depends on the specific goal, context and population used in the inquiry. Show less
Zedlitz, A.M.E.E.; Van Eijk, M.; Kessels, R.P.C.; Geurts, A.C.H.; Fasotti, L. 2012
Objective. To evaluate the need for information and treatment of poststroke fatigue (PSF) in community-dwelling patients with stroke in The Netherlands. Methods. Data were obtained from a Dutch... Show moreObjective. To evaluate the need for information and treatment of poststroke fatigue (PSF) in community-dwelling patients with stroke in The Netherlands. Methods. Data were obtained from a Dutch internet-based questionnaire. The amount of information received about PSF, self-management and other treatment options, and the perceived need for treatment were scored. PSF was assessed with two Visual Numerical Scales of fatigue severity (VNSF), the Fatigue Severity Scale (FSS7), and by scoring the nature (physical versus mental) and onset time of PSF. Results. Data were available of 538 stroke survivors (mean age 52 years, 45% men, and mean time since onset 2.7 years). Severe fatigue (both VNSF items ≥7; 48%) and severe fatigue impact (FSS7 > 5; 68%) were frequent. Most participants (57%) experienced both physical and mental fatigue. Only 17% of the respondents indicated to have had received sufficient information about PSF and 7% about treatment options, whereas 56% expressed a substantial need for treatment. The need for treatment was moderately associated with fatigue severity and fatigue impact, whereas information status was not related to any demographical, fatigue, or stroke characteristic. Conclusions. PSF is a significant symptom after stroke requiring medical attention and treatment. The results of this survey indicate that patients do not receive adequate information on PSF. Show less
Objective. To obtain a psychosocial profile of patients with poststroke fatigue (PSF), which could aid in optimizing treatment strategies. Methods. Eighty-eight outpatients with severe PSF measured... Show moreObjective. To obtain a psychosocial profile of patients with poststroke fatigue (PSF), which could aid in optimizing treatment strategies. Methods. Eighty-eight outpatients with severe PSF measured with the Checklist Individual Strength-fatigue subscale (CIS-f) and the Fatigue Severity Scale (FSS) were selected. Depression and anxiety, psychological distress, coping, social support, and self-efficacy of this group were compared to reference groups of healthy controls and patients with other chronic diseases. Associations between psychosocial characteristics and fatigue were calculated. Results. Compared to healthy controls, patients with PSF reported more psychological distress, less problem-focused coping, and more positive social support. Minor or no differences were found in comparison with other chronic patients. The CIS-f correlated with somatic complaints and the FSS with cognitive complaints. Conclusion. Patients with PSF show a psychosocial profile comparable to patients with other chronic disease. Implications for diagnosis and treatment are discussed. Show less
