Despite the importance of subjective well-being (SWB) for students’ mental and physical health, there is a lack of longitudinal studies investigating the development of SWB in adolescents and what factors are associated with it over time. The present study seeks to shed further light on this question by investigating adolescents longitudinally. A sample of German academic tracks students (N = 476) from five schools were followed longitudinally over a time period of 30 months with four measurement points from Grade 11 to Grade 13. Alongside the longitudinal assessment of SWB (mood and life satisfaction), a range of other factors were also assessed at t1 including; demographic factors (sex, age, socio-economic status (HISEI)), intelligence, grades (report cards provided by the schools), personality (neuroticism, extraversion) and perceived parental expectations and support. Latent growth curve models were conducted to investigate the development of SWB and its correlates. On average, mood and life satisfaction improved at the end of mandatory schooling. However, students significantly differed in this pattern of change. Students’ life satisfaction developed more positively if students had good grades at t1. Furthermore, even though introverted students started with lower life satisfaction at t1, extraverts’ life showed greater increases over time. Changes in mood were associated with socio-economic background; the higher the HISEI the more positive the change. As social comparisons in school performance are almost inevitable, schools should intervene to buffer the influence of school grades on students’ SWB.
The aim of this study was to assess the psychosocial burden in parents of children with spinal muscular atrophy (SMA), detected by newborn screening (NBS), for which first pilot projects started in January 2018 in Germany. The survey, performed 1–2 years after children’s diagnosis of SMA via NBS, included 3 parent-related questionnaires to evaluate the psychosocial burden, quality of life (QoL)/satisfaction and work productivity and activity impairment in the families. 42/44 families, detected between January 2018 and February 2020, could be investigated. Interestingly, statistical analysis revealed a significant difference between families with children that received SMN-targeted therapy vs. children with a wait-and-see strategy as to social burden (p = 0.016) and personal strain/worries about the future (p = 0.02). However, the evaluation of QoL showed no significant differences between treated vs. untreated children. Fathers of treated children felt more negative impact regarding their productivities at work (p = 0.005) and more negative effects on daily activities (p = 0.022) than fathers of untreated children. Thus, NBS in SMA has a psychosocial impact on families, not only in terms of diagnosis but especially in terms of treatment, and triggers concerns about the future, emphasizing the need for comprehensive multidisciplinary care. Understanding the parents’ perspective allows genetic counselors and NBS programs to proactively develop a care plan for parents during the challenging time of uncertainty, anxiety, frustration, and fear of the unknown.
Background: The NBS projects started in February 2018 in Germany. The aim of our study was to assess the psychosocial burden in parents of children with spinal muscular atrophy (SMA) detected by newborn screening (NBS). Follow-up a year on after diagnosis included 3 parent-related questionnaires to evaluate the psychosocial burden, quality of life (QoL)/satisfaction and work productivity and activity impairment of families with a positive result after NBS.Results: 42/44 families were included. Statistical analysis revealed a significant difference between families with treated vs. untreated children as to social burden (p=0.016) and personal strain/worries about the future (p=0.02), whereas the evaluation of the QoL showed no significant differences between treated vs. untreated children. Fathers of treated children felt more negative effects regarding their productivities at work (p=0.005) and more negative effects on daily activities (p=0.022) in the last seven days than fathers of untreated children. Conclusion: NBS for SMA has a psychosocial impact on families due to medical treatment and triggers worries about the future, emphasizing the need for comprehensive multidisciplinary care.
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