Acquired brain injury (ABI) may cause fatigue and participation restrictions in young patients. However, knowledge regarding the course of these problems over time is lacking. This study aims to... Show moreAcquired brain injury (ABI) may cause fatigue and participation restrictions in young patients. However, knowledge regarding the course of these problems over time is lacking. This study aims to describe the course of fatigue and participation and their relationship over time in an observational two-year follow-up study among patients(5-24 years) with ABI referred for outpatient rehabilitation and their parents. Patients/parents completed the PedsQL (TM) Multidimensional-Fatigue-Scale(PedsQL (TM) MFS, totalscore/3-domains) and the Child/Adolescent-Scale of Participation(CASP, totalscore/4-domains). Scores ranged from 0-100: lower scores = more fatigue/participation problems. Linear mixed models and repeated measures correlations were used to determine the course over time (change-scores/95%CI) and correlations between fatigue/participation. At baseline, 223 patients/246 parents participated with 94/104 at either T1, T2 or both. Median age was 15 years (IQR:12-17), 74% had a traumatic brain injury. Mean(SD) patient/parent-reported PedsQL (TM) MFS totalscores(baseline) were: 50.3(17.3) and 53.8(19.1), respectively. CASP totalscores were 78.0(16.4) and 87.1(13.6). Over time, patient-reported scores improved significantly (fatigue: + 8.8 (2.9;14.7), p < 0.05)/participation: + 10.5 (6.3;14.7), p < 0.05)). Similar results were found regarding parent-reported fatigue: + 8.7 (3.4;13.9), p < 0.05 but not regarding participation. Two years later, fatigue was still considerable(patients:59.1/parents:62.5). Moderate/fair correlations between fatigue/participation over time were found. Fatigue and participation in young patients with ABI improved two years after referral to rehabilitation. However, fatigue remained a considerable problem. Show less
Background CenteringPregnancy (CP), a model of group antenatal care, was implemented in 2012 in the Netherlands to improve perinatal health; CP is associated with improved pregnancy outcomes.... Show moreBackground CenteringPregnancy (CP), a model of group antenatal care, was implemented in 2012 in the Netherlands to improve perinatal health; CP is associated with improved pregnancy outcomes. However, motivating women to participate in CP can be difficult. As such, we explored the characteristics associated with CP uptake and attendance and then investigated whether participation differs between health care facilities. In addition, we examined the reasons why women may decline participation and the reasons for higher or lower attendance rates. Methods Data from a stepped-wedge cluster randomized controlled trial were used. Univariate and multivariate logistic regression models were used to determine associations among women's health behavior, sociodemographic and psychosocial characteristics, health care facilities, and participation and attendance in CP. Results A total of 2562 women were included in the study, and the average participation rate was 31.6% per health care facility (range of 10%-53%). Nulliparous women, women 30 years old, and women reporting average or high levels of stress were more likely to participate in CP. Participation was less likely for women who had stopped smoking before prenatal intake, or who scored below average on lifestyle/pregnancy knowledge. For those participating in CP, 87% attended seven or more out of the 10 sessions, and no significant differences were found in women's characteristics when compared for higher or lower attendance rates. After the initial uptake, group attendance rates remained high. Conclusion A more comprehensive understanding of the variation in participation rate between health care facilities is required, in order to develop effective strategies to improve the recruitment of women, especially those with less knowledge and understanding of health issues and smoking habits. Show less
Allonsius, F.; Kloet, A. de; Bedell, G.; Markus-Doornbosch, F. van; Rosema, S.; Meesters, J.; ... ; Holst, M. van der 2021
Improving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is... Show moreImproving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is scarce and little is known regarding the differences in perspectives between patients and parents in the outpatient rehabilitation setting. The aims are to describe participation restrictions among children/young adults (5-24 years) with ABI and investigating differences between patients' and parents' perspectives. At admission in 10 rehabilitation centers, patients and parents were asked to complete the Child and Adolescent Scale of Participation (CASP; score 0-100; lower score = more restrictions) and injury/patient/family-related questions. CASP scores were categorized (full/somewhat-limited/limited/very-limited participation). Patient/parent-reported outcomes were compared using the Wilcoxon signed-rank test. 223 patients and 245 parents participated (209 paired-samples). Median patients' age was 14 years (IQR; 11-16), 135 were female (52%), 195 had traumatic brain injury (75%). The median CASP score reported by patients was 82.5 (IQR: 67.5-90) and by parents 91.3 (IQR: 80.0-97.5) (difference = p < 0.05). The score of 58 patients (26%) and 25 parents (10%) was classified as 'very-limited'. Twenty-six percent of children and young adults referred for rehabilitation after ABI had "very-limited" participation. Overall, parents rated their child's participation better than patients themselves. Quantifying participation restrictions after ABI and considering both perspectives is important for outpatient rehabilitation treatment. Show less
Participatory video design is a novel approach to collect experiences and perceptions of older people about the age-friendliness of their city or neighborhood. In this article, we describe how this... Show moreParticipatory video design is a novel approach to collect experiences and perceptions of older people about the age-friendliness of their city or neighborhood. In this article, we describe how this co-creative method can add to specific knowledge about the preferences and needs of older people about the improvement or preservation of their environment. We describe two examples of this approach in the cities of The Hague and Leiden, the Netherlands. Persons of 60 years and older were invited to participate in a "workshop" on filmmaking focusing on age-friendly cities. A professional filmmaker and a researcher of the University of Applied Sciences worked in co-creation with older people, to produce short films on the topics that were perceived as important from the perspective of the participants. The older people worked in couples to produce their short films about the city or their neighborhood. Topics of the films included communication and information, outdoor spaces, social relations, and community support. The use of participatory video design can foster empowerment and social interaction among older participants, and insight into the preferences and needs of older people regarding age-friendly cities. Show less
Markus-Doornbosch, F. van; Holst, M. van der; Kloet, A.J. de; Vlieland, T.P.M.V.; Meesters, J.J.L. 2019
Purpose: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). Materials & Methods: Cross-sectional study... Show morePurpose: To study the association between fatigue and participation and QoL after acquired brain injury (ABI) in adolescents and young adults (AYAs). Materials & Methods: Cross-sectional study with AYAs aged 14-25 years, diagnosed with ABI. The PedsQL (TM) Multidimensional Fatigue Scale, Child & Adolescent Scale of Participation, and PedsQL (TM) 4.0 Generic Core Scales were administered. Results: Sixty-four AYAs participated in the study, 47 with traumatic brain injury (TBI). Median age at admission was 17.6 yrs, 0.8 yrs since injury. High levels of fatigue (median 44.4 (IQR 34.7, 59.7)), limited participation (median 82.5 (IQR 68.8, 92.3)), and diminished QoL (median 63.0 (IQR 47.8, 78.3)) were reported. More fatigue was significantly associated with more participation restrictions (beta 0.64, 95%CI 0.44, 0.85) and diminished QoL (beta 0.87, 95%CI 0.72, 1.02). Conclusions: AYAs with ABI reported high levels of fatigue, limited participation and diminished quality of life with a significant association between fatigue and both participation and QoL. Targeting fatigue in rehabilitation treatment could potentially improve participation and QoL. Show less
Holst, M. van der; Groot, J.; Steenbeek, D.; Pondaag, W.; Nelissen, R.G.H.H.; Vlieland, T.P.M.V. 2018
In this contribution, we will illustrate the modern-day dynamics of the interplay between the need for expedience and efficiency on the one hand, and the demand for openness, inclusiveness and... Show moreIn this contribution, we will illustrate the modern-day dynamics of the interplay between the need for expedience and efficiency on the one hand, and the demand for openness, inclusiveness and transparency on the other by looking into one of government’s main decision-making processes: the legislative process. Particularly in the field of legislation, the balancing of both efficiency and transparency is of the essence for modern legislatures in parliamentary democracies: laws expressed by acts and legislative instruments can only be truly effective if they rest on broad societal support. As we will argue, a transparent and inclusive legislative process functions as a kind of democratic check on government action: it guarantees sufficient deliberative activity before a government may act. Throughout our contribution, a 2012 comparative study commissioned by the Dutch Ministry of Security and Justice, and carried out by an interdisciplinary team of researchers from Leiden University will be used as a guiding rail to illustrate some the ways in which different jurisdictions in Europe have managed to combine, or at least balance, the need for legislative efficiency and transparency. We will use this study to demonstrate how traditional legislative processes nowadays grapple to translate the will of the citizens into effective legislation, how modern administrations still need democratically underpinned legislative procedures as the basis for the legitimation of (their) decisions, how efficient delivery of decisions and careful (lengthy) scrutiny interact. On the basis of this material we will further discuss concepts of, respectively, efficiency and transparency and especially the way modern legislatures examined in the study use information and communication technology (ICT) to overcome the sometimes opposing demands on their legislative processes. Insofar as possible we will try to highlight a few ‘best practices’ that show how legislative processes can (and cannot) adapt to new present day demands. Show less
According to international children’s rights law and standards, juvenile defendants should be given the opportunity to be heard in juvenile justice proceedings. Moreover, from developmental... Show moreAccording to international children’s rights law and standards, juvenile defendants should be given the opportunity to be heard in juvenile justice proceedings. Moreover, from developmental psychological research it can be concluded that young people who appear in court usually have a limited understanding of judicial procedures. Therefore, it is argued that juveniles need to be assisted in giving their views and in understanding juvenile justice proceedings. Insights from the children’s rights and the developmental psychological perspective are taken as starting points in this study to formulate requirements for the effective participation of juvenile defendants. Moreover, this article presents an overview of youth court practices in 11 European countries in order to analyse the extent to which the requirements are fulfilled in practice. Show less
