Background: Adverse Childhood Experiences (ACEs) are an overlooked risk factor for behavioural, mental and physical health disparities in children with intellectual disabilities (ID) and borderline intellectual functioning (BIF). Aims: To gain insight into the presence of the 10 original Wave II ACEs and family context risk variables in a convenience sample of children with ID and BIF in Dutch residential care. Methods and procedures: 134 case-files of children with ID (n = 82) and BIF (n = 52) were analysed quantitatively. Outcomes and results: 81.7 % of the children with ID experienced at least 1 ACE, as did 92.3 % of the children with BIF. The average number of ACEs in children with ID was 2.02 (range 0???? 8) and in children with BIF 2.88 (range 0???? 7). About 20 % of the children with moderate and mild ID experienced 4 ACEs or more. Many of their families faced multiple and complex problems (ID: 69.5 %; BIF 86.5 %). Multiple regression analysis indicated an association between family context risk variables and the number of ACEs in children. Conclusions and implications: The prevalence of ACEs in children with ID and BIF appears to be considerably high. ACEs awareness in clinical practice is vital to help mitigate negative outcomes.
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Internationaal onderzoek laat zien dat ingrijpende jeugdervaringen, ook wel Adverse Childhood Experiences (ACE’s) genoemd, een sleutelrol spelen in de ontwikkeling van jeugdigen en hun (latere) psychische en fysieke gezondheid (o.a. Felitti et al., 1998; McLaughlin, 2016). Jeugdigen met verstandelijke beperkingen en hun ouders zijn helaas sterk ondervertegenwoordigd in internationaal onderzoek naar ACE’s, terwijl het belangrijk is dat de huidige inzichten ook kunnen bijdragen aan de verbetering van hun gezondheid en welzijn (o.a. Keesler, 2014; Northway, 2017). Uit verschillende studies blijkt namelijk dat mensen met een verstandelijke beperking vaker geestelijke en fysieke gezondheidsproblemen hebben (Northway, 2017). Daarnaast blijkt dat zij vaker worden blootgesteld aan een groter aantal ingrijpende levensgebeurtenissen (o.a. Emerson, 2015; Mason-Roberts et al., 2018) en dat deze blootstelling gerelateerd is aan een verhoogd risico op geestelijke gezondheidsproblemen (zie Vervoort-Schel et al., 2018 voor verwijzingen). De premisse van de ACE’s-studies is dat het voorkomen of verminderen van ingrijpende jeugdervaringen een positieve invloed heeft op gezondheid en welzijn in het leven (Northway, 2017). Het is veelbelovend om daar verder onderzoek naar te doen.
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Most multi‑problem young adults (18–27 years old) have been exposed to childhood maltreatment and/or have been involved in juvenile delinquency and, therefore, could have had Child Protection Service (CPS) interference during childhood. The extent to which their childhood problems persist and evolve into young adult‑ hood may differ substantially among cases. This might indicate heterogeneous profiles of CPS risk factors. These pro‑ files may identify combinations of closely interrelated childhood problems which may warrant specific approaches for problem recognition and intervention in clinical practice. The aim of this study was to retrospectively identify distinct statistical classes based on CPS data of multi‑problem young adults in The Netherlands and to explore whether these classes were related to current psychological dysfunctioning and delinquent behaviour. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/).
MULTIFILE
Background: The immunization uptake rates in Pakistan are much lower than desired. Major reasons include lack of awareness, parental forgetfulness regarding schedules, and misinformation regarding vaccines. In light of the COVID-19 pandemic and distancing measures, routine childhood immunization (RCI) coverage has been adversely affected, as caregivers avoid tertiary care hospitals or primary health centers. Innovative and cost-effective measures must be taken to understand and deal with the issue of low immunization rates. However, only a few smartphone-based interventions have been carried out in low- and middle-income countries (LMICs) to improve RCI. Objective: The primary objectives of this study are to evaluate whether a personalized mobile app can improve children’s on-time visits at 10 and 14 weeks of age for RCI as compared with standard care and to determine whether an artificial intelligence model can be incorporated into the app. Secondary objectives are to determine the perceptions and attitudes of caregivers regarding childhood vaccinations and to understand the factors that might influence the effect of a mobile phone–based app on vaccination improvement. Methods: A mixed methods randomized controlled trial was designed with intervention and control arms. The study will be conducted at the Aga Khan University Hospital vaccination center. Caregivers of newborns or infants visiting the center for their children’s 6-week vaccination will be recruited. The intervention arm will have access to a smartphone app with text, voice, video, and pictorial messages regarding RCI. This app will be developed based on the findings of the pretrial qualitative component of the study, in addition to no-show study findings, which will explore caregivers’ perceptions about RCI and a mobile phone–based app in improving RCI coverage. Results: Pretrial qualitative in-depth interviews were conducted in February 2020. Enrollment of study participants for the randomized controlled trial is in process. Study exit interviews will be conducted at the 14-week immunization visits, provided the caregivers visit the immunization facility at that time, or over the phone when the children are 18 weeks of age. Conclusions: This study will generate useful insights into the feasibility, acceptability, and usability of an Android-based smartphone app for improving RCI in Pakistan and in LMICs.
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Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires.METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ).RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59).CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.
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Er is in onderzoek nog relatief weinig aandacht voor de individuele en contextuele factoren en de daarbij behorende zorgbehoeften van residentieel opgenomen jeugdigen die op licht verstandelijk beperkt (LVB) of zwakbegaafd (ZB) niveau functioneren. De resultaten van dit exploratief dossieronderzoek kunnen een bijdrage leveren aan de doorontwikkeling van een individueel en contextueel hulpaanbod voor deze jeugdigen en hun gezinnen. Bij een relatief grote groep (63%) van de in dit onderzoek betrokken jeugdigen speelden problemen op zowel kind-, ouder-, gezins- als omgevingsniveau een rol. De spreiding in het aantal kenmerken liet zien dat er bij veel jeugdigen die op een LVB of ZB niveau functioneerden én hun gezinnen sprake was van een grote diversiteit aan en opeenstapeling van problemen. Dit vraagt om een op het systeem afgestemde, multidisciplinaire en traumasensitieve aanpak.
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Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
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Aan patiënten opgenomen in de forensische zorg zit een steekje los. Maar volgens de publieke opinie ook aan de professionals, en in de processen hapert ook het een en ander. In haar oratie ging Vivienne de Vogel in op deze losse steekjes en hoe deze te herstellen zijn. Ze benadrukt daarbij het belang van onderzoek vanuit drie perspectieven: patiënten, professionals en processen. ‘Een geïntegreerd perspectief is nodig om de kwaliteit van de forensische zorg verder te verbeteren.’
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"Background: Victimization is highly prevalent in individuals with mild intellectual disability (MID) or borderline intellectual functioning (BIF) and is an important risk factor for mental health problems and violent behavior. Not much is known, however, about victimization history in women with MID-BIF admitted to forensic mental health care. Aims: The aim of this multicenter study is to gain insight into victimization histories and mental health problems of female forensic psychiatric patients with MID-BIF. Methods: File data were analyzed of 126 women with MID-BIF who have been admitted to one of five Dutch forensic psychiatric hospitals between 1990 and 2014 and compared to data of 76 female patients with average or above intellectual functioning and to a matched sample of 31 male patients with MID-BIF. Results: All forensic paients had high rates of victimization, but women with MID-BIF showed an even higher prevalence of victimization during both childhood and adulthood and more complex psychopathology compared to female patients without MID-BIF. Compared to male forensic patients with MID-BIF, women with MID-BIF were more often victim of sexual abuse during childhood. During adulthood, the victimization rate in these women was more than three times higher than in men. Conclusions: Victimization is a salient factor in female forensic patients with MID-BIF and more gender-responsive trauma-focused treatment is needed."
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This is the protocol for a review and there is no abstract. The objectives are as follows: To assess the effects of skeletal muscle training on functional performance in people with spinal muscular atrophy (SMA) type 3 and to identify any adverse effects
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