Ethical aspects of diagnosis and interventions for children with fetal alcohol Spectrum disorder (FASD) and their families.

BACKGROUND: Fetal alcohol spectrum disorders (FASD) is an umbrella term covering several conditions for which alcohol consumption during pregnancy is taken to play a causal role. The benefit of individuals being identified with a condition within FASD remains controversial. The objective of the present study was to identify ethical aspects and consequences of diagnostics, interventions, and family support in relation to FASD. METHODS: Ethical aspects relating to diagnostics, interventions, and family support regarding FASD were compiled and discussed, drawing on a series of discussions with experts in the field, published literature, and medical ethicists. RESULTS: Several advantages and disadvantages in regards of obtaining a diagnosis or description of the condition were identified. For instance, it provides an explanation and potential preparedness for not yet encountered difficulties, which may play an essential role in acquiring much needed help and support from health care, school, and the social services. There are no interventions specifically evaluated for FASD conditions, but training programs and family support for conditions with symptoms overlapping with FASD, e.g. ADHD, autism, and intellectual disability, are likely to be relevant. Stigmatization, blame, and guilt are potential downsides. There might also be unfortunate prioritization if individuals with equal needs are treated differently depending on whether or not they meet the criteria for a specific condition. CONCLUSIONS: The value for the concerned individuals of obtaining a FASD-related description of their condition - for instance, in terms of wellbeing - is not established. Nor is it established that allocating resources based on whether individuals fulfil FASD-related criteria is justified, compared to allocations directed to the most prominent specific needs.

Prominent ears: the effect of reconstructive surgery on self-esteem and social interaction in children with a minor defect compared to children with a major orthopedic defect.

BACKGROUND: In a prospective study of patients with prominent ears, the effect of reconstructive surgery on self-esteem and social interaction was examined 1 year after surgery. METHODS: Of 42 patients with prominent ears aged 7 to 15 years, 21 were matched with a comparison group of orthopedic patients (leg lengthening) and a control group of schoolchildren. Psychological measures evaluated self-esteem, depression, anxiety, cognition, parents' ratings of child behavior and symptoms, and parent anxiety. Semistructured interviews with the child and parents were also conducted. RESULTS: The motivation to be operated on was pain, teasing, and feelings of being different. The satisfaction rate with the result of reconstructive surgery was high. The psychological measures of the prominent ears group had results close to those of the control group, although the leg lengthening group had lower self-esteem and higher depression and anxiety scores. With few exceptions, all patients had scores within the normal range on self-rating scales. Parents reported less activity at leisure time in both patient groups than in the control group. After surgery, parents reported improved behavior on the Child Behavior Checklist total problem score. CONCLUSIONS: Patients with minor defects had fewer self-reported psychological and behavior problems than the major defect group. Interestingly, prominent ears patients also had low activity levels. Reconstructive surgery had no adverse effect on the prominent ears patients in this interim study but rather resulted in improved well-being. It is important to investigate further the effect of reconstructive surgery on children's self-esteem and social interaction.

Does leg lengthening pose a threat to a child's mental health?: An interim report one year after surgery.

UNLABELLED: Previous studies suggest that children react with functional and psychological disturbances after leg lengthening (LL). Long-term effects are not known, and there is a lack of prospective studies. The aim of this interim prospective study was to investigate the psychological impact of the Ilizarov technique on a sample of children 1 year after surgery. METHODS: : The subjects were 27 patients aged 6 to 16 years treated using the Ilizarov technique at the Pediatric Orthopaedic Department, Uppsala University Hospital, between 1997 and 2005. A control group of healthy children matched for age and sex were also included.Semistructured interviews and psychometric measures (anxiety, depression, self-esteem, behavior) were administered to patients and parents before surgery and 1 year after. Psychological measures were correlated with medical records (days of hospitalization, gained length, etc). The control group was examined at initial assessment only. RESULTS: : Before reconstructive surgery, the LL group had a significantly lower self-esteem compared with the control group. Aggressive behavior, attention and externalization problems, anxiety, and depression were significantly reduced after LL. Parents' state anxiety was also reduced. There were no differences in trait anxiety between the parents of patients and the parents of the control children. CONCLUSIONS: : Patients reported pain, psychological discomfort, complications, and restrained function during LL. However, there were no adverse psychological effects at 1-year follow-up; rather, there were signs of improved mental health. No single psychological parameter could predict the outcome after LL.

Do Kurdistanian and Swedish parents and children differ in their rating of competence and behavioural problems?

OBJECTIVE: This paper investigates child self-rating of behavioural problems and competence as compared with their parents' ratings, in comparative samples of Kurdistanian refugee children in Sweden and a group of Swedish children. METHOD: Kurdistanian and Swedish comparative samples composed of 32 children each matched in age, sex and trauma level, in the same community, and their parents. Among a large battery of instruments, the child behavioural checklist (CBCL) was used in separate interviews with parents and their children. RESULTS: When compared to the children's self-reported problems scores, the Swedish parents reported significantly lower scores than their children, compared to the Kurdistanian refugee parents. CONCLUSION: Regardless of cultural backgrounds, there were more similarities than differences in the children's reporting of their behavioural problems and competence. The discrepancy between the Swedish parents' estimation of their children's behavioural problems and the children's self-reported behavioural problems could be an effect of the individualistic nature of Swedish society compared with the more collective nature of Kurdistanian culture. However, the results should be considered hypothesis generating rather than conclusive.