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.
This thesis describes an Action Research (AR) project aimed at the implementation of Evidence Based Practice in a mental health nursing setting in the Netherlands. The main research question addressed in this thesis is: In what way is Action Research with an empowering appropriate to implement Evidence Based Practice in a mental health nursing setting in the Netherlands and what is the effect of this implementation on the care experienced by the client, the nursing interventions and the context in this setting compared to a comparative setting? To answer this main research question, the following questions derived from it were addressed: What is Evidence Based Practice? What is known about implementing evidence-based practice in nursing through Action Research? Which factors have to be dealt with in a mental health nursing setting, so the implementation of EBP with AR with an empowering intent will be more successful? Which factors have to be dealt with in a mental health nursing setting, so the implementation of EBP with AR with an empowering intent will be successful? How is EBP implemented through AR with an empowering intent and what are the outcomes for the use of evidence, the context and the facilitation in the setting? What is the effect of the implementation of EBP in mental health nursing using AR with an empowering intent on the care experienced by the client, the nursing interventions and the context compared to a comparison setting? The first two questions were answered by a search of the literature while the remaining questions were answered during the AR study conducted in two mental health organisations in the Netherlands.
Several interventions have been developed to support families living with parental mental illness (PMI). Recent evidence suggests that programmes with whole-family components may have greater positive effects for families, thereby also reducing costs to health and social care systems. This review aimed to identify whole-family interventions, their common characteristics, effectiveness and acceptability. A systematic review was conducted according to PRISMA 2020 guidelines. A literature search was conducted in ASSIA, CINAHL, Embase, Medline, and PsycINFO in January 2021 and updated in August 2022. We double screened 3914 abstracts and 212 papers according to pre-set inclusion and exclusion criteria. The Mixed Methods Appraisal Tool was used for quality assessment. Quantitative and qualitative data were extracted and synthesised. Randomised-control trial data on child and parent mental health outcomes were analysed separately in random-effects meta-analyses. The protocol, extracted data, and meta-data are accessible via the Open Science Framework (https://osf.io/9uxgp/). Data from 66 reports—based on 41 independent studies and referring to 30 different interventions—were included. Findings indicated small intervention effects for all outcomes including children’s and parents’ mental health (dc = −0.017, −027; dp = −0.14, −0.16) and family outcomes. Qualitative evidence suggested that most families experienced whole-family interventions as positive, highlighting specific components as helpful, including whole-family components, speaking about mental illness, and the benefits of group settings. Our findings highlight the lack of high-quality studies. The present review fills an important gap in the literature by summarising the evidence for whole-family interventions. There is a lack of robust evidence coupled with a great need in families affected by PMI which could be addressed by whole-family interventions. We recommend the involvement of families in the further development of these interventions and their evaluation.
MULTIFILE
Individuals are increasingly confronted with ‘diseases of modernity’, such as stress and burnout. While insights from the work-family interface have mainly pointed towards demands and resources coming from the work and nonwork domains, the proposed multi-method PhD research project aims to contribute to contemporary scholarly and societal work-life and burnout debates by presenting an alternative theoretical lens on the development of mental health complaints in today’s society, especially among the younger Millennial generation. The project aims to shed light on how and why Millennial employees engage in a so-called ‘work/nonwork image (re)construction process’.The project will reflect on the following questions:How, why and when do individual workers engage in a process in which they construct their image(s) in the work and nonwork domains? What are the relationships, if any, between the image (re)construction process individuals engage in and potential positive- and negative consequences?The findings are expected to have important implications not only for preventive measures for individuals and organizations, but also for possible avenues for future studies. Project Partner: Nyenrode Business Universiteit
