Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations of MFS in children are thoroughly addressed in several studies, literature on the impact of MFS on daily functioning is restricted to pediatric advice on sports and leisure participation. Therefore, the full impact of MFS on daily functioning remains unclear. The aim of this qualitative study was to explore parents' perspectives on the impact of MFS on daily functioning of children with MFS aged 4-12 years, themselves and family regarding functional performance, activities, participation, personal and environmental factors, and disease burden. Methods: In this qualitative study parents participated in individual semi-structured interviews (n = 10) and 3 focus groups (n = 5, n = 5 and n = 6). Meetings were transcribed, and data were analyzed using thematic analysis. Meaningful concepts were coded, and concepts concerning children with MFS were linked to the International Classification of Functioning, Disability and Health for Children and Youth. Thereafter themes were identified and interpreted.Results: Parents reported their children could not keep up with peers because of fatigue, pain and physical impairments. Children experienced participation restrictions in school, sports, play and other leisure activities. Parents reported their child as being different due to physical appearance, which provoked unsupportive attitudes. Parental burden was caused by high care needs, lack of support, a limited social life, and concerns about the child's development. Family burden was caused by adjusted and complex family schedules, other family members with MFS, and reproductive planning decision-making, whereas family cohesiveness and caring were positively perceived factors. Conclusions: Parents perceived a large impact of MFS on daily functioning of their children with MFS, themselves and their family. More awareness among all professionals involved in the care of children with MFS and their families is needed so that professionals can address their support needs and provide tailored interventions, rehabilitation and/or educational programs to empower and improve daily functioning of the children, parents and family.
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PurposeWe assessed the association between trajectories of stressful life events (SLEs) throughout adolescence and changes in mental health from childhood to young adulthood. Further, we assessed whether family functioning moderated this association.MethodsData of the first six waves of the TRAILS study (2001-2016; n = 2229) were used, a cohort followed from approximately age 11 to 23. We measured SLEs (death of a family member or other beloved one, delinquency, moving, victim of violence, parental divorce, and sexual harassment) at ages 14, 16 and 19. Family functioning was measured at all six time points using the Family Assessment Device (FAD), and mental health was measured through the Youth/Adult Self-Report at ages 11 and 23. Latent class growth analyses (LCGA) were used to examine longitudinal trajectories and associations.ResultsWe identified three SLE trajectories (low, middle, high) throughout adolescence, and found no significant associations between these trajectories and changes in mental health from childhood to young adulthood. Family functioning and SLE trajectories were significantly associated, however, the association of SLE trajectories and changes in mental health was not modified by family functioning. Mental health problems at age 11 increased the likelihood of high SLE trajectories during adolescence, and of experiencing negative family functioning.ConclusionExperiencing SLEs throughout adolescence does not have a direct impact on changes in mental health from childhood to young adulthood, but early adolescence mental health problems increase the likelihood of experiencing SLEs.
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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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