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.
• The combination of coping with mental health problems and caring for children makes parents vulnerable.• Family-centred practice can help to maintain and strengthen important family relationships, and to identify and enhance the strengths of parents with a mental illness, thus contributing to their recovery.• Parents with mental illness find strength for parenting in several ways. They feel responsible, and this helps them to stay alert while parenting; parenthood also offers a basis for social participation.• Dedication to the parental role provides a focus; parents develop strengths and skills as they find a balance between attending to their own lives and caring for their children, and parenting prompts them to find adequate sources of support and leads to a valued identity.• Practitioners can support parents with mental health problems to set and address parenting related goals.
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