Childhood nephrotic syndrome: Children's and parents' illness perceptions and psychological sequelae

Childhood nephrotic syndrome is a chronic illness with an unpredictable course requiring long-term medication and treatments. In its mildest form children require steroids over long periods and regular hospital check-ups. In some cases children will experience relapses which require hospitalisation, while others will be unresponsive to steroids and will undergo aggressive chemotherapy treatments. In its most severe form children will have their kidneys removed and will receive dialysis. In the majority of cases children will experience obvious physical changes, such as swelling of the body and may be restricted in their activities. Investigations into the psychological impact of this illness for children and their families are not reported m the literature, although hospital staff working with these children have described anxiety and depression amongst children and their families. The aim of the current study was to explore the psychological sequelae of this disorder in both affected children and their parents. In addition, the potential explanatory value of identifying illness perceptions [Weinman, 1997 #464] as predictors of psychological outcome was examined. Fifty-seven families with children between the ages of 7 and 18 years, from a total population of one hundred and twenty-one attending a national centre for nephrotic syndrome, participated in the study. One parent and the affected child from each family completed the questionnaires. Open-ended questions derived from pilot interviews were included to obtain information about families' experiences of nephrotic syndrome. Standardised parent measures included the Illness Perceptions Questionnaire - carer's version, the Strengths and Difficulties Questionnaire, the Hospital Anxiety and Depression Scale and the Impact of Events Scale - Revised. Standardised child measures included the Illness Perceptions Questionnaire (adapted for children), the Spence Children's Anxiety Scale, the Birleson Depression Scale and the Children's Impact of Events Scale. Open-ended questions revealed a number of factors that appear to affect most of this population, with changes in the child's physical appearance, missing school and being unable to participate fully in activities being reported frequently. Subsequent difficulties such as the affected child being teased, bullied and excluded from social groups were also described by a substantial number of parents. Descriptive and statistical analyses identified elevated levels of anxiety and trauma symptomatology amongst parents, and increased levels of anxiety, depression and trauma symptoms amongst children. Parent and child ratings of psychological symptoms were moderately correlated. In addition, significant numbers of parents reported difficulties with their child's behaviour and these reports were significantly correlated with children's reports of psychological symptoms and parental levels of psychological symptoms. Parent and child ratings of perceived illness identity and consequences were highly correlated, while parents and children showed low levels of agreement as to the duration of the illness and controllability or likely cure of the illness. Multiple regression analyses indicated that children's illness perceptions were predictive of child psychological outcome and similarly, parents' illness perceptions were predictive of parent psychological outcome. This study indicates that children suffering from nephrotic syndrome and their parents are at increased risk of developing psychological difficulties. The Illness Perceptions model was found to be a useful construct with good explanatory power

Student and Supervisor Experiences of the Systemic Practice Scale (SPS): A Discourse Analysis

There has been recent emphasis on the assessment of competence in training courses to improve evidence-based practice and outcomes for clients. The systemic practice scale (SPS) was developed as a structured way to evaluate systemic practice. There is however little research on the impact and experience of competence measures particularly within the context of systemic practice. Focus groups conducted with students and supervisors from systemic family practice (SFP) programmes explored their views of the SPS as an appropriate measure of systemic competence. Three dominant discourses were identified: feedback as valuable, measuring competence, and being systemic. Clinical and practice implications for the use of the SPS in assessing systemic competence need to be considered in line with the values of systemic practice, maintaining reflexivity and collaboration between the student and supervisor in order for the feedback to have a meaningful impact on student development. <br/

Using recognition testing to support semantic learning in developmental amnesia

Patients with developmental amnesia (DA) have suffered hippocampal damage in infancy and subsequently shown poor episodic memory, but good semantic memory. It is not clear how patients with DA learn semantic information in the presence of episodic amnesia. However, patients with DA show good recognition memory and it is possible that semantic learning may be supported by recognition. Building on previous work, we compared two methods for supporting semantic learning in DA; recognition-learning and recall-learning. In each condition, a patient with DA (aged 8 years) was presented with semantic information in animated videos. After each presentation of a video, learning was supported by an immediate memory test. Two videos were paired with a cued recall test. Another two videos were paired with a multiple-choice test to enable recognition-based learning. The outcome measure was semantic recall performance after a short delay of 30 min and a long delay of one week. Results showed a benefit of recognition-learning compared to recall-learning on cued recall in the patient with DA (76% vs. 35%). This finding indicates that young people with severe hippocampal damage can utilize recognition to support semantic learning. This has implications for the support of school-aged children with episodic memory difficulties

Breastfeeding, the use of docosahexaenoic acid-fortified formulas in infancy and neuropsychological function in childhood

OBJECTIVE: To investigate the relation between breastfeeding, use of docosahexaenoic acid (DHA)-fortified formula and neuropsychological function in children. DESIGN: Prospective cohort study. SETTING: Southampton, UK. SUBJECTS: 241 children aged 4 years followed up from birth. MAIN OUTCOME MEASURES: IQ measured by the Wechsler Pre-School and Primary Scale of Intelligence (3rd edn), visual attention, visuomotor precision, sentence repetition and verbal fluency measured by the NEPSY, and visual form-constancy measured by the Test of Visual-Perceptual Skills (Non-Motor). RESULTS: In unadjusted analyses, children for whom breast milk or DHA-fortified formula was the main method of feeding throughout the first 6 months of life had higher mean full-scale and verbal IQ scores at age 4 years than those fed mainly unfortified formula. After adjustment for potential confounding factors, particularly maternal IQ and educational attainment, the differences in IQ between children in the breast milk and unfortified formula groups were severely attenuated, but children who were fed DHA-fortified formula had full-scale and verbal IQ scores that were respectively 5.62 (0.98 to 10.2) and 7.02 (1.56 to 12.4) points higher than children fed unfortified formula. However, estimated total intake of DHA in milk up to age 6 months was not associated with subsequent IQ or with score on any other test. CONCLUSIONS: Differences in children's intelligence according to type of milk fed in infancy may be due more to confounding by maternal or family characteristics than to the amount of long-chain polyunsaturated fatty acids they receive in milk

The behaviour of children with special needs : effects of animal-assisted activities

The effects of animal-assisted activities (AAA) on the behaviour of children and young adults with special needs have been recorded, and compared with the effects of similar activities that did not involve a live animal. With the exception of one study of children with Cerebral Palsy, all participants attended special schools, residential centres or day centres for those with severe learning disabilities, and several had been more specifically diagnosed as also suffering from autism or Down's syndrome. Several experimental designs were employed in order to establish the value of different methods of AAA and to assess possible influences of methodology on the detection of both general and individual-specific effects.In the first study interactive behaviours displayed during AAA were found to be qualitatively and quantitatively different when compared with other activities directed by the same adult. Specifically, the real dog increased appropriate responses and initiations about itself and reduced levels of ignoring the adult that was guiding activities compared to an imitation (toy) dog of similar appearance. In a second study cooperative behaviour during educational tasks was enhanced through dog involvement compared to standard educational tools, and the level of dog involvement was thought to be a factor in differences between activities. High levels of dog involvement were also found to encourage children with Cerebral Palsy to perform physical exercises, but the use of the dog as a reward was less effective.Five single-case research studies supported the findings of the first two studies, and provided additional information describing idiosyncratic reactions to AAA. Specific behaviours, identified as needing to be encouraged or reduced prior to the study were to a large extent successfully targeted through individually designed programmes. Some individuals appeared to benefit more than others; additionally withdrawal of dog sessions was identified as a potential source of stress for the participants. Cooperative and appropriate behaviour was enhanced for all participants and some problem behaviours (where apparent) were reduced. General effects of cooperation and responding to the adults directing the activities, were shown through increases in physical and/or communicative responses.</p

Self-awareness assessment during cognitive rehabilitation in children with acquired brain injury: a feasibility study and proposed model of child anosognosia

Purpose: To compare three ways of assessing self-awareness in children with traumatic brain injury (TBI) and to propose a model of child anosognosia. Method: Five single cases of children with severe TBI, aged 8–14, undergoing metacognitive training. Awareness was assessed using three different measures: two measures of metacognitive knowledge/intellectual awareness (a questionnaire and illustrated stories where child characters have everyday problems related to their executive dysfunction) and one measure of on-line/emergent awareness (post-task appraisal of task difficulty). Results: All three measures showed good feasibility. Analysis of awareness deficit scores indicated large variability (1–100%). Three children showed dissociated scores. Conclusions: Based on these results, we propose a model of child self-awareness and anosognosia and a framework for awareness assessment for rehabilitation purposes. The model emphasizes (1) the role of on-line error detection in the construction of autobiographical memories that allow a child to build a self-knowledge of his/her strengths and difficulties; (2) the multiple components of awareness that need to be assessed separately; (3) the implications for rehabilitation: errorless versus error-based learning, rehabilitation approaches based on metacognition, rationale for rehabilitation intervention based on child’s age and impaired awareness component, ethical and developmental consideration of confrontational methods

Transatlantic progress in measurement of cognitive outcomes in paediatric oncology trials

The importance of measuring quality of survival within paediatric oncology trials is increasingly recognised. However, capturing neuropsychological outcomes and other aspects of quality of survival in the context of large or multinational trials can be challenging. We provide examples of protocols designed to address this challenge recently employed in clinical trials in the USA and Europe. We discuss their respective strengths and challenges, obstacles encountered and future opportunities for transatlantic collaboration

Comparison of fitness scores of genes important during phosphorus-limited growth and phosphate starvation and seventeen other previously tested stresses or growth conditions.

<p>Genes with the potential to inform about responses specific to phosphate-limited conditions are listed along the y-axis on the right. Experimental conditions are labeled on top, along the x-axis. The color bar in the top right corner shows colors assigned to the numerical values of fitness scores: negative scores representing fitness defects are blue, positive scores representing fitness benefits are yellow, and fitness-neutral scores are black. The first seven columns starting from the left show scores measured and reported in the current study, the adjacent seventeen columns show scores measured by previous studies and stored in the <a href="http://microbesonline.org" target="_blank">microbesonline.org</a> database. The names of genes with predicted direct roles in phosphorus homeostasis are labeled by light blue-colored boxes. The names of genes with predicted or confirmed direct roles in the biosynthesis of the cell envelope are labeled by rose-colored boxes. The names of genes with predicted roles in transport are labeled by yellow-colored boxes, those encoding the Hmc complex are labeled by green-colored boxes.</p