Parental reports of the oral health-related quality of life of children with cerebral palsy

Background: The severity of physical and mental impairments and oral problems, as well as socioeconomic factors, may have an impact on quality of life of children with cerebral palsy (CP). The aim of this research was to assess the impact of impairments and oral health conditions, adjusted by socioeconomic factors, on the Oral Health-Related Quality of Life (OHRQoL) of children with CP using their parents as proxies. Methods: Sixty children, between 6-14 years of age were selected. Their parents answered a children's OHRQoL instrument (5 domains) which combines the Parental-Caregivers Perception Questionnaire (P-CPQ) and Family Impact Scale (FIS). The severity of dental caries, type of CP, communication ability, gross motor function, seizures and socioeconomic conditions were assessed. Results: Considering the total score of the OHRQoL instrument, only the reduction of communication ability and dental caries severity had a negative impact on the OHRQoL (p < 0.05). Considering each domain of the instrument, the severity of the type of CP and its reduction of communication ability showed a negative impact on oral symptoms and functional limitations domains (p < 0.05). Seizures have a negative impact on oral symptoms domain (p = 0.006). The multivariate fitted model showed that the severity of dental caries, communication ability and low family income were negatively associated with the impact on OHRQoL (p = 0.001). Conclusions: The severity of dental caries, communication ability, and family income are conditions strongly associated with a negative impact on OHRQoL of children with CP.

Memory in children with temporal lobe epilepsy is at least partially explained by executive dysfunction

An association between memory and executive dysfunction (ED) has been demonstrated in patients with mixed neurological disorders. We aimed to investigate the impact of ED in memory tasks of children with temporal lobe epilepsy (TLE). We evaluated 36 children with TLE and 28 controls with tests for memory, learning, attention, mental flexibility, and mental tracking. Data analysis was composed of comparison between patients and controls in memory and executive function; correlation between memory and executive function tests; and comparison between patients with mild and severe ED in memory tests. Children with TLE had worse performance in focused attention, immediate and delayed recall, phonological memory, mental tracking, planning, and abstraction. Planning, abstraction, and mental tracking were correlated with visual and verbal memory. Children with severe ED had worse performance in verbal and visual memory and learning tests. This study showed that ED was related to memory performance in children with TLE. (C) 2012 Elsevier Inc. All rights reserved.

Connecting the Dots: Families and Children with Special Needs in a Rural Community

Due to the rising number of children with disabilities, the needs of these families must be addressed. This article describes the development and implementation of a regional forum in a rural community to address education and training needs of families and professionals. The Special Needs Summit provided workshops, information, and activities for parents and professionals. Participants were invited to participate in a study through a survey soliciting feedback regarding the importance and effectiveness of the training and information received through the Summit, gaps in resources, and future educational and training needs. Overall, participants gave satisfactory ratings regarding the training and education provided during the forum, and gave direction for future programming.

Coping is excellent in Swiss Children with inflammatory bowel disease: results from the Swiss IBD cohort study

BACKGROUND Inflammatory bowel disease (IBD) starting during childhood has been assumed to impair quality of life (QoL) of affected children. As this aspect is crucial for further personality development, the health-related quality of life (HRQOL) was assessed in a Swiss nationwide cohort to obtain detailed information on the fields of impairment. METHODS Data were prospectively acquired from pediatric patients included in the Swiss IBD Cohort Study. IBD activity was evaluated by PCDAI and PUCAI. The age adapted KIDSCREEN questionnaire was evaluated for 110 children with IBD (64 with Crohn's disease 46 with ulcerative colitis). Data were analyzed with respect to established reference values of healthy controls. RESULTS In the KIDSCREEN index a moderate impairment was only found for physical wellbeing due to disease activity. In contrast, mental well-being and social support were even better as compared to control values. A subgroup analysis revealed that this observation was restricted to the children in the German speaking part of Switzerland, whereas there was no difference compared to controls in the French part of Switzerland. Furthermore, autonomy and school variables were significantly higher in the IBD patients as compared to controls. CONCLUSIONS The social support for children with IBD is excellent in this cohort. Only physical well-being was impaired due to disease activity, whereas all other KIDSCREEN parameters were better as compared to controls. This indicates that effective coping and support strategies may be able to compensate the burden of disease in pediatric IBD patients.

Stimulant medication and psychotic symptoms in offspring of parents with mental illness

BACKGROUND: Stimulants, such as methylphenidate, are among the most commonly used medications in children and adolescents. Psychotic symptoms have been reported as rare adverse reactions to stimulants but have not been systematically inquired about in most previous studies. Family history of mental illness may increase the vulnerability to drug-induced psychotic symptoms. We examined the association between stimulant use and psychotic symptoms in sons and daughters of parents with major mood and psychotic disorders. METHODS: We assessed psychotic symptoms, psychotic-like experiences, and basic symptoms in 141 children and youth (mean ± SD age: 11.8 ± 4.0 years; range: 6–21 years), who had 1 or both parents with major depressive disorder, bipolar disorder, or schizophrenia, and of whom 24 (17.0%) had taken stimulant medication. RESULTS: Psychotic symptoms were present in 62.5% of youth who had taken stimulants compared with 27.4% of participants who had never taken stimulants. The association between stimulant use and psychotic experiences remained significant after adjustment for potential confounders (odds ratio: 4.41; 95% confidence interval: 1.82–10.69; P = .001) and was driven by hallucinations occurring during the use of stimulant medication. A temporal relationship between use of stimulants and psychotic symptoms was supported by an association between current stimulant use and current psychotic symptoms and co-occurrence in cases that were assessed on and off stimulants. CONCLUSIONS: Psychotic symptoms should be monitored during the use of stimulants in children and adolescents. Family history of mood and psychotic disorders may need to be taken into account when considering the prescription of stimulants.

End -of -life planning and decision -making: Implications for adults with mental retardation

This research focused on the topic of end-of-life planning and decision-making for adults affected by mental retardation. Adults with mental retardation have unique challenges in this regard, including difficulty communicating their wishes without assistance and diminished decision-making skills. The primary research objective was to identify factors that can affect opportunities for adults with mental retardation in community-based services settings (and their advocates) to be involved in planning and deciding about their own end-of-life experience. ^ A descriptive qualitative inquiry was designed to explore issues related to death and dying, and the notion of end-of-life planning, from the perspective of adults with mental retardation who receive publicly-funded community services ("clients") and family members of individuals who receive such services. Study participants were recruited from a single mental retardation service provider in a large urban setting (the "Agency"). Sixteen clients and 14 families of Agency clients took part. Client data collection was accomplished through face-to-face interviews, focus group meetings, and record reviews; family members were involved in a face-to-face interview only. ^ An initial coding scheme was developed based upon literature and policy reviews, and themes related to the research questions. Analysis involved extracting data from transcripts and records and placing it into appropriate thematic categories, building support for each theme with the accumulated data. Coding themes were modified to accommodate new data when it challenged existing themes. ^ Findings suggest that adults with mental retardation do have the requisite knowledge, interest, and ability to participate in decisions about their end-of-life experience and handling of affairs. Siblings are overwhelmingly the chosen future surrogates and they (or their children) will likely be the end-of-life advocates for their brothers and sisters affected by mental retardation. Findings further point to a need for increased awareness, accurate information, and improved communication about end-of-life issues, both in general and particular to adults affected by mental retardation. Also suggested by the findings is a need to focus on creating accommodations and adaptations that can best uncover a person's authentic views on life and death and related end-of-life preferences. Practical implications and suggestions for further research are also discussed. ^

Stress management in mothers of children with Autism Spectrum Disorder : psychological characteristics, coping strategies and biological correlates

Un figlio con un Disturbo dello Spettro Autistico, caratterizzato da gravi difficoltà nelle relazioni, nei comportamenti e nella comunicazione, costringe tutto il sistema familiare a gestire un notevole stress dovuto alla gestione quotidiana di una patologia così complessa. Per questi motivi, i genitori necessitano di un sostegno il più possibile personalizzato rispetto alle caratteristiche del loro contesto familiare. Per fare questo sarebbe importante individuare quali siano i parametri correlati ai livelli di stress nei familiari di pazienti con autismo e che potrebbero avere un’influenza sul benessere familiare. Lo scopo di questo studio è quello di valutare quali caratteristiche di personalità, stili di coping e capacità di gestire le emozioni possano essere in relazione con la reattività individuale alle situazioni di stress, valutata attraverso alcuni correlati biologici, quali il livello di cortisolo (l’ormone dello stress) e la variabilità della frequenza cardiaca. L’ottica di ricerca applicata fa sì che gli obiettivi ultimi di questo lavoro siano anche quelli di diminuire l’accesso ai servizi per questi soggetti, considerando il fatto che progetti individualizzati di sostegno genitoriale costituiscono un fattore protettivo rispetto a conseguenze fisiche e psicologiche di disagio se implementati tenendo conto della variabilità individuale rispetto alle caratteristiche sopra citate.

Once Upon a Time in Therapy: Crafting Therapeutic Narratives to Help Familiarize Children with the Therapeutic Process.

Young children often harbor misconceptions about psychotherapy and the role of psychologists. These misconceptions are ignited by rumors and misinformation that are provided to the child by a variety of sources and can compromise both the effectiveness of therapy and the therapeutic dyad. In this paper we explore how recent trends in patient engagement in child psychotherapy, cultural dynamics between patients and practitioners, and children's lack of knowledge surrounding mental health services can negatively impact therapy. Wednesday Afternoons with Dr. J. (WADJ) is a whimsical fictional therapeutic narrative created to inform children about aspects of the therapeutic process while providing adults with tangible structure surrounding how to talk to children about mental healthcare. The advantages of utilizing this narrative to prime children for therapy are discussed, as are methods for promoting the narrative to the greater community.

Medicaid managed care : challenges in implementing safeguards for children with special needs : report to Congressional requesters /

"B-281045"--P. 3.

Change strategies to assist agencies in developing supported living services for people with developmental disabilities /

This material has been funded through a grant from the Illinois Planning Council on Developmental Disabilities.

Family Futures Planning : training, support, and advocacy program for adults with developmental disabilities and their families : family member's manual /

"Funded by: Illinois Council on Developmental Disabilities, Chicago Association for Retarded Citizens, Rehabilitation Research Training Center on Aging and Developmental Disabilities (National Institute on Disability and Rehabilitation Research Grant #H133B980046) in the Department of Disability and Human Development at the University of Illinois at Chicago."

Parent to parent : a guide for parents of children with special needs.

Description based on: 1989.

Music for children with special needs.

"Frances Cole ... chairman."

Mental defect in a rural county.

Mode of access: Internet.

Self-regulatory behaviors in children with Down syndrome and typically developing children measured using the Goodman Lock Box

Self-regulation has been identified as an area of difficulty for those with mental retardation. The Goodman Lock Box provides measures of two critical aspects of self-regulation-planfulness and maintenance of goal-directed behavior. In this study, the Lock Box performance of 25 children with Down syndrome was compared with that of 43 typically developing children, matched for mental age (24-36 months). Children in both groups showed similar levels of competence, planfulness and distractibility. However, children with Down syndrome displayed more task-avoidant behavior. Some issues related to the measurements obtained from the Lock Box are raised. (C) 2003 Elsevier Science Ltd. All rights reserved.