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.
With these results at hand we developed a new program and evaluated it . In this presentation we will reflect on the merits of this program but also share with you the insight gained from other studies that we did to in the context of the program. First a study on the prevalence to give us an indication of how many people with SMI have responsibilities as a parent. Working through these figures we have been wondering about the international differeecs in this aspect. Maybe you as an international crowd can help us to gain more insight in this subject. Second I will describe the intervention that was developed based on the imput of clients and building on the vision and methods of the Boston approach to rehabilition. At this moment more then 100 counselors are trained in this approach. To evaluate the intervention offered and establish some figures on its effectiveness, a quasi experimental study was done and I will present some of the results in the ample time we have. When developing the program and making an effort in implementing it in mental helath care, we became aware that there was still a lot to learn from both parents and mental health workers. During the experimental study, we learned that not many parents actually ask for support and that workers were enthousiastic about the training but did not find ways to implenent the program at full course. In this line of reasoning it became important to speak with different parents with SMI about the meaning of parenthood, how they succesfully dealt with the demands of parenting, waht it meant for their recovery and what kind of resources they used.
• 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.
