The psychosocial consequences of growing up with Heritable Connective Tissue Disorders (HCTD) are largely unknown. We aimed to assess Health-Related Quality of Life (HRQoL) and mental health of children and adolescents with HCTD. This observational multicenter study included 126 children, aged 4–18 years, with Marfan syndrome (MFS, n = 74), Loeys–Dietz syndrome (n = 8), molecular confirmed Ehlers–Danlos syndromes (n = 15), and hypermobile Ehlers–Danlos syndrome (hEDS, n = 29). HRQoL and mental health were assessed through the parent and child-reported Child Health Questionnaires (CHQ-PF50 and CHQ-CF45, respectively) and the parent-reported Strengths and Difficulties Questionnaire. Compared with a representative general population sample, parent-reported HRQoL of the HCTD-group showed significantly decreased Physical sum scores (p < 0.001, d = 0.9) and Psychosocial sum scores (p = 0.024, d = 0.2), indicating decreased HRQoL. Similar findings were obtained for child-reported HRQoL. The parent-reported mental health of the HCTD-group showed significantly increased Total difficulties sum scores (p = 0.01, d = 0.3), indicating decreased mental health. While the male and female MFS- and hEDS-subgroups both reported decreased HRQoL, only the hEDS-subgroup reported decreased mental health. In conclusion, children and adolescents with HCTD report decreased HRQoL and mental health, with most adverse outcomes reported in children with hEDS and least in those with MFS. These findings call for systematic monitoring and tailored interventions.
BACKGROUND Seclusion is an intervention widely used in Dutch mental health care. The intervention can be effective in acute situations to avert (further) aggression or self-harm. However, seclusion is also a controversial intervention that may not have any positive effect with regard to symptom improvement. In general patients report negative effects after being secluded e.g. anxiety and having had a traumatic experience.The main reason for seclusion is not manageable aggressive behaviour of a patient. Earlier studies reported several risk factors that may contribute to seclusion, regarding patients’ characteristics, but also with regard to staff characteristics, working protocols and unit characteristics. Because of unequivocally results there is the need for a longitudinal prospective study to examine staff- and unit determinants in association with seclusion.AIMS The objective of this study is to determine which nursing staff and unit characteristics are associated with seclusion following aggression in hospitalized adult psychiatric patients. We hope to create a predictive model to estimate the risk of seclusion on an acute psychiatric ward.METHODS We will conduct a prospective observational study on a closed psychiatric ward of an academic hospital. Patients are aged 18 – 65 years and are admitted when their psychiatric condition leads to an immediate threat to the patient themselves or their surroundings.All nurses on the ward are all qualified nurses and registered in the Dutch registration of healthcare professionals. They are trained every six months in techniques of verbal de-escalation and safe physical restraint. For both nurses and the patients baseline characteristics are monitored. Every shift (day, evening, night) data are gathered on the patients, nurses and unit. Data are retrieved from the electronic patient chart, including information of the Brøset Violence Checklist. Furthermore, the exchange of information among nurses is measured using the Grid instrument. Data will be analysed using multilevel regression analysis. Data will be collected for a period of 2 years, which started January 2013.RESULTS The primary endpoint in our study is the incidence of seclusion. As a secondary endpoint, the duration of the seclusion is measured. These endpoints are measured using the Argus registration system and will be linked to predictors of seclusion, with special focus on the nursing staff- and unit determinants.
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Chronic illness affects a person’s wellbeing and affects the ability to perform the social roles of spouse or parent. When working with people with long-lasting mental or somatic illnesses, social workers and nurses are confronted with needs for support, especially for parents. Although programs are in place for the children of parents with chronic illnesses, specific services for the parents themselves are scarce, as are parenting support courses for professionals. In an explorative study we investigated the similarities and differences between mental health organizations and general hospitals in providing support to parents. Using a cross-sectional design, information on supported parenting was collected through an internet questionnaire. Twice as many professionals in general hospitals can provide support to parents than did those in mental health organizations that were not trained in supported parenting. Professionals in mental health institutions generally reported that the attention paid to the parental role is insufficient. However, professionals in mental health organizations who were trained in supported parenting considered paying attention to the parental role more as a part of their job than the participants from organizations without such training. Further research should expand this first pilot study on the attitude of professionals towards supported parenting.
