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1.
Eur Child Adolesc Psychiatry ; 33(2): 505-526, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36864363

RESUMO

A better understanding of the endocannabinoid system and a relaxation in regulatory control of cannabis globally has increased interest in the medicinal use of cannabinoid-based products (CBP). We provide a systematic review of the rationale and current clinical trial evidence for CBP in the treatment of neuropsychiatric and neurodevelopmental disorders in children and adolescents. A systematic search of MEDLINE, Embase, PsycINFO, and the Cochrane Central Register of Trials was performed to identify articles published after 1980 about CBP for medical purposes in individuals aged 18 years or younger with selected neuropsychiatric or neurodevelopmental conditions. Risk of bias and quality of evidence was assessed for each article. Of 4466 articles screened, 18 were eligible for inclusion, addressing eight conditions (anxiety disorders (n = 1); autism spectrum disorder (n = 5); foetal alcohol spectrum disorder (n = 1); fragile X syndrome (n = 2); intellectual disability (n = 1); mood disorders (n = 2); post-traumatic stress disorder (n = 3); and Tourette syndrome (n = 3)). Only one randomised controlled trial (RCT) was identified. The remaining seventeen articles included one open-label trial, three uncontrolled before-and-after trials, two case series and 11 case reports, thus the risk of bias was high. Despite growing community and scientific interest, our systematic review identified limited and generally poor-quality evidence for the efficacy of CBP in neuropsychiatric and neurodevelopmental disorders in children and adolescents. Large rigorous RCTs are required to inform clinical care. In the meantime, clinicians must balance patient expectations with the limited evidence available.


Assuntos
Canabinoides , Transtornos de Estresse Pós-Traumáticos , Síndrome de Tourette , Criança , Humanos , Adolescente , Canabinoides/farmacologia , Canabinoides/uso terapêutico , Transtornos de Ansiedade/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Síndrome de Tourette/tratamento farmacológico
2.
Front Endocrinol (Lausanne) ; 14: 1183525, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37313445

RESUMO

Background: Oxytocin and vasopressin systems are altered in Prader Willi syndrome (PWS). However, investigations into endogenous oxytocin and vasopressin levels as well as clinical trials evaluating the effect of exogenous oxytocin on PWS symptoms have had mixed results. It is also unknown whether endogenous oxytocin and vasopressin levels are associated with certain PWS behaviours. Method: We compared plasma oxytocin and vasopressin and saliva oxytocin levels in 30 adolescents and adults with PWS to 30 typically developing age-matched controls. We also compared neuropeptide levels between gender and genetic subtypes within the PWS cohort and examined the relationship between neuropeptide levels and PWS behaviours. Results: While we did not measure a group difference in plasma or saliva oxytocin levels, plasma vasopressin was significantly lower in individuals with PWS compared to controls. Within the PWS cohort, saliva oxytocin levels were higher in females compared to males and individuals with the mUPD compared to the deletion genetic subtype. We also found the neuropeptides correlated with different PWS behaviours for males and females and for genetic subtypes. For the deletion group, higher plasma and saliva oxytocin levels were related to fewer behaviour problems. For the mUPD group, higher plasma vasopressin levels were related to more behaviour problems. Conclusion: These findings support existing evidence of a vasopressin system defect in PWS and for the first time identify potential differences in the oxytocin and vasopressin systems across PWS genetic subtypes.


Assuntos
Síndrome de Prader-Willi , Feminino , Masculino , Humanos , Ocitocina , Vasopressinas , Fenótipo , Plasma
3.
Artigo em Inglês | MEDLINE | ID: mdl-36293782

RESUMO

The current study explored the process of change in Stepping Stones Triple P (SSTP) using a community-based sample of 891 families of children with developmental disabilities (DD) who participated in an SSTP intervention at a community level. A preliminary analysis of outcome data indicated that SSTP intervention was effective in reducing parental adjustment difficulties, coercive parenting, and children's behavioral and emotional difficulties immediately after the intervention. The effects were maintained at 12-month follow-up. The results also indicated that change in parental adjustment over the course of intervention was significantly associated with a change in parenting behaviors. However, change in parenting behaviors but not change in parental adjustment, predicted children's behavioral and emotional problems following the intervention. The results suggest that positive parenting skills are the most salient ingredient driving the change in child behaviors in SSTP interventions.


Assuntos
Transtornos do Comportamento Infantil , Poder Familiar , Criança , Humanos , Poder Familiar/psicologia , Transtornos do Comportamento Infantil/psicologia , Comportamento Infantil/psicologia
4.
Res Dev Disabil ; 128: 104304, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35820264

RESUMO

BACKGROUND: Explores the validity of the five-item parental adjustment scale, a subscale of the previously validated Parenting and Family Adjustment Scales. AIM: The aim was to assess the factor structure and convergent validity of a measure of parental adjustment within parents of typically developing children and parents of childiren with developmental and/or intellectual disabilities. METHODS AND PROCEDURES: Cross-sectional survey data was analysed from Australian parents of children aged 2-12 years who were typically developing children (N = 683) and had developmental and/or intellectual disabilities (N = 756). Confirmatory factor analyses and multi-group structural equation modelling examined if the factor structure performed similarly across the two populations. Convergent validity was assessed. OUTCOMES AND RESULTS: The confirmatory factor analysis supported the hypothesised one-factor structure for the parental adjustment scale in both populations. Partial measurement invariance confirmed that the scale was structurally consistent within both parent groups. The convergent validity was supported by significant correlations with the DASS-21 in the disability population and the K10 in the typically developing population. CONCLUSIONS AND IMPLICATIONS: This brief, easily administered, five-item scale demonstrates strong potential in assessing parental adjustment, within both parents of typically developing children and parents of children with developmental and/or intellectual disabilities.


Assuntos
Deficiência Intelectual , Austrália , Criança , Estudos Transversais , Deficiências do Desenvolvimento/diagnóstico , Humanos , Poder Familiar , Pais , Psicometria/métodos , Inquéritos e Questionários
5.
Psychol Med ; 52(3): 574-586, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-32643597

RESUMO

BACKGROUND: A number of genomic conditions caused by copy number variants (CNVs) are associated with a high risk of neurodevelopmental and psychiatric disorders (ND-CNVs). Although these patients also tend to have cognitive impairments, few studies have investigated the range of emotion and behaviour problems in young people with ND-CNVs using measures that are suitable for those with learning difficulties. METHODS: A total of 322 young people with 13 ND-CNVs across eight loci (mean age: 9.79 years, range: 6.02-17.91, 66.5% male) took part in the study. Primary carers completed the Developmental Behaviour Checklist (DBC). RESULTS: Of the total, 69% of individuals with an ND-CNV screened positive for clinically significant difficulties. Young people from families with higher incomes (OR = 0.71, CI = 0.55-0.91, p = .008) were less likely to screen positive. The rate of difficulties differed depending on ND-CNV genotype (χ2 = 39.99, p < 0.001), with the lowest rate in young people with 22q11.2 deletion (45.7%) and the highest in those with 1q21.1 deletion (93.8%). Specific patterns of strengths and weaknesses were found for different ND-CNV genotypes. However, ND-CNV genotype explained no more than 9-16% of the variance, depending on DBC subdomain. CONCLUSIONS: Emotion and behaviour problems are common in young people with ND-CNVs. The ND-CNV specific patterns we find can provide a basis for more tailored support. More research is needed to better understand the variation in emotion and behaviour problems not accounted for by genotype.


Assuntos
Lista de Checagem , Variações do Número de Cópias de DNA , Adolescente , Criança , Emoções , Feminino , Genômica , Genótipo , Humanos , Masculino
6.
J Neurodev Disord ; 13(1): 25, 2021 06 21.
Artigo em Inglês | MEDLINE | ID: mdl-34148559

RESUMO

Prader-Willi syndrome (PWS) is a rare neurodevelopmental genetic disorder associated with a characteristic behavioral phenotype that includes severe hyperphagia and a variety of other behavioral challenges such as temper outbursts and anxiety. These behaviors have a significant and dramatic impact on the daily functioning and quality of life for the person with PWS and their families. To date, effective therapies addressing these behavioral challenges have proven elusive, but several potential treatments are on the horizon. However, a limiting factor for treatment studies in PWS is the lack of consensus in the field regarding how to best define and measure the complex and interrelated behavioral features of this syndrome. The International PWS Clinical Trials Consortium (PWS-CTC, www.pwsctc.org ) includes expert PWS scientists, clinicians, and patient advocacy organization representatives focused on facilitating clinical trials in this rare disease. To address the above gap in the field, members of the PWS-CTC "Behavior Outcomes Working Group" sought to develop a unified understanding of the key behavioral features in PWS and build a consensus regarding their definition and description. The primary focus of this paper is to present consensus definitions and descriptions of key phenotypic PWS behaviors including hyperphagia, temper outbursts, anxiety, obsessive-compulsive behaviors, rigidity, and social cognition deficits. Patient vignettes are provided to illustrate the interrelatedness and impact of these behaviors. We also review some available assessment tools as well as new instruments in development which may be useful in measuring these behavioral features in PWS.


Assuntos
Síndrome de Prader-Willi , Ansiedade , Consenso , Humanos , Síndrome de Prader-Willi/terapia , Qualidade de Vida
7.
BMJ Case Rep ; 13(11)2020 Nov 03.
Artigo em Inglês | MEDLINE | ID: mdl-33148570

RESUMO

The management of challenging and refractory destructive behaviour in young patients with intellectual disability (ID) is a major issue faced by families, carers and healthcare professionals who support them. Often, paediatricians and psychiatrists use various behavioural and psychopharmacological approaches, including polypharmacy. We report on one such patient who benefitted greatly from a trial of clozapine, resulting in less aggression, improved quality of life and potentially huge cost savings. We conclude that clozapine may represent a beneficial though seldom-used option for severe, destructive behaviour in young people with ID.


Assuntos
Clozapina/uso terapêutico , Deficiência Intelectual/tratamento farmacológico , Qualidade de Vida , Comportamento Autodestrutivo/tratamento farmacológico , Adolescente , Antipsicóticos/uso terapêutico , Humanos , Deficiência Intelectual/psicologia , Masculino , Comportamento Autodestrutivo/psicologia
8.
BMJ Open ; 9(10): e032559, 2019 10 09.
Artigo em Inglês | MEDLINE | ID: mdl-31601605

RESUMO

INTRODUCTION: The population-based (Lililwan) study of fetal alcohol spectrum disorder (FASD) revealed a high prevalence of FASD in the remote communities of the Fitzroy Valley, Western Australia (WA) and confirmed anecdotal reports from families and teachers that challenging child behaviours were a significant concern. In response, Marninwarntikura Women's Resource Centre initiated a partnership with researchers from The University of Sydney to bring the positive parenting program (Triple P) to the Valley. Triple P has been effective in increasing parenting skills and confidence, and improving child behaviour in various Indigenous communities. METHODS AND ANALYSIS: Extensive consultation with community leaders, service providers, Aboriginal health networks and academic institutions was undertaken and is ongoing. Based on community consultations, the intervention was adapted to acknowledge local cultural, social and language complexities. Carers of children born after 1 January 2002 and living in the Fitzroy Valley are invited to participate in Group Triple P, including additional Stepping Stones strategies for children with complex needs. Programme are delivered by local community service workers, trained and accredited as Triple P providers or 'parent coaches'. Assessments for parent coach pretraining and post-training includes their perceived ability to deliver the intervention and the cultural appropriateness of the programme. Carers complete preintervention and postintervention and 6-month follow-up assessments of parenting practices, self-efficacy and child behaviour. ETHICS AND DISSEMINATION: Approval was granted by the University of Sydney Human Ethics Committee, WA Aboriginal Health Ethics Committee, WA Country Health Services Ethics Committee and Kimberley Aboriginal Health Planning Forum. Consultation with community is imperative for efficacy, engagement, community ownership and sustainability of the programme, and will be ongoing until findings are disseminated. Anonymous findings will be disseminated through peer-reviewed journals, community feedback sessions and scientific forums.


Assuntos
Transtornos do Espectro Alcoólico Fetal/terapia , Havaiano Nativo ou Outro Ilhéu do Pacífico , Poder Familiar , Austrália , Criança , Humanos
9.
Pharmacoeconomics ; 37(4): 501-511, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-29512032

RESUMO

OBJECTIVES: This research produces a preference-based monetary valuation of informal care provided to children with intellectual disability (ID) that can be directly applied in economic evaluations. METHODS: A discrete-choice experiment (DCE) was designed to elicit an individual's willingness to accept compensation for different care tasks. Respondents were presented choice sets that included a care package comprising different amounts and types of care and asked to choose between the care package provided free of charge or providing that care themselves and receiving cash compensation. The care package included personal care, social support, household errands and housework, with the value of compensation, number of care hours provided and types of care varied across the choice sets. Choices were analysed using a generalised multinomial logit model and latent class model. RESULTS: A representative sample of 198 caregivers completed the survey (response rate 52%). Participants were recruited in Australia. Overall, caregivers would accept a minimum of Australian dollars ($A)20.61 to provide 1 h of care. The preferences for assistance varied significantly with different types of care tasks. Individuals placed the highest value on receiving assistance with social support ($A35.96) and the least value on receiving assistance with household errands ($A-0.92) CONCLUSIONS: This study produces a value of informal care provided to children with ID that can be directly applied in economic evaluations. The study shows that informal care tasks are not valued equally. Caregivers placed the most value on receiving assistance with social support, which may reflect the time spent by caregivers on these tasks.


Assuntos
Deficiência Intelectual/terapia , Assistência ao Paciente/economia , Adulto , Idoso , Cuidadores/economia , Criança , Comportamento de Escolha , Economia Médica , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos de Pesquisa , Apoio Social
10.
Am J Med Genet A ; 176(11): 2292-2300, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-30289600

RESUMO

The purpose of this study was to develop a comprehensive understanding of temper outbursts in Prader-Willi syndrome (PWS). A survey was developed from interviews conducted with individuals with PWS and their caregivers. The survey was completed by 101 primary caregivers. The findings suggest that outburst frequency decreases with age while duration increases. Adolescents exhibited more severe behaviors than children or adults. No differences were found across gender or genetic subtype. Provocations fit into three themes: goal blockage, social injustice, and difficulty dealing with change. Distracting the person or giving them space to calm down were the only management strategies judged effective. Risperidone, sertraline, and fluoxetine were the most common medications prescribed for outbursts, though parents reported only minor effects.


Assuntos
Emoções , Síndrome de Prader-Willi/psicologia , Adolescente , Adulto , Cuidadores , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Síndrome de Prader-Willi/tratamento farmacológico , Síndrome de Prader-Willi/genética , Adulto Jovem
11.
BMC Fam Pract ; 19(1): 42, 2018 04 02.
Artigo em Inglês | MEDLINE | ID: mdl-29609547

RESUMO

BACKGROUND: Encouraging early child development and the early identification of developmental difficulties is a priority. The Ministry of Health in the Australian State of New South Wales (NSW), has recommended a program of developmental surveillance using validated screening questionnaires, namely, the Parents' Evaluation of Development Status (PEDS) and Ages and Stages Questionnaire (ASQs), however, the use of these tools has remained sub-optimal. A longitudinal prospective birth cohort "Watch Me grow" study was carried out in the South Western Sydney (SW) region of NSW to ascertain the uptake as well as the strategies and the resources required to maximise engagement in the surveillance program. This paper reports on a qualitative component of the study examining the attitudes, enablers and barriers to the current developmental surveillance practices, with reference to screening tools, amongst health professionals. METHODS: Qualitative data from 37 primary health care providers in a region of relative disadvantage in Sydney was analysed. RESULTS: The major themes that emerged from the data were the "difficulties/problems" and "positives/benefits" of surveillance in general, and "specificity" of the tools which were employed. Barriers of time, tool awareness, knowledge and access of referral pathways, and services were important for the physician providers, while the choice of screening tools and access to these tools in other languages were raised as important issues by Child and Family Health Nurses (CFHN). The use of these tools by health professionals was also influenced by what the professionals perceived as the parents' understanding of their child's development. While the PEDS and ASQs was utilised by CFHNs, both General Practitioners (GPs) and paediatricians commented that they lacked awareness of developmental screening tools and highlighted further training needs. CONCLUSIONS: The results highlight the practical challenges to, and limited knowledge and uptake of, the use of recommended screening tools as part of developmental surveillance. There is a need for further research regarding the most effective integrated models of care which will allow for a better collaboration between parents and service providers and improve information sharing between different professionals such as CFHNs GPs, Practices nurses and Paediatricians involved in screening and surveillance programs.


Assuntos
Atitude do Pessoal de Saúde , Deficiências do Desenvolvimento/diagnóstico , Programas de Rastreamento , Desenvolvimento Infantil , Pré-Escolar , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Lactente , Masculino , New South Wales , Pais , Inquéritos e Questionários
12.
Curr Opin Psychiatry ; 31(2): 123-127, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29206687

RESUMO

PURPOSE OF REVIEW: PWS is a severe developmental disability for which there is no known treatment. The oxytocin system is currently a primary target for intervention. The aim of this article is to review the evidence for the efficacy of intranasal oxytocin in PWS. RECENT FINDINGS: To date, there have been five clinical trials of oxytocin in PWS. Four of these studies reported that oxytocin improved behaviors. However, each of these studies suffered important limitations that likely influenced the findings. For example, one study did not include a control group. Another study did not statistically analyze the effects of oxytocin on behavior. The final two studies used study-specific measures for which psychometric properties have not been assessed. SUMMARY: Because of these limitations, the most appropriate conclusion to draw from the existing studies is that there is currently no convincing evidence that intranasal oxytocin improves symptoms of PWS. However, this does not mean that oxytocin is not involved in PWS. Rather, it suggests that further work is needed to understand the nature of the PWS oxytocin abnormality.


Assuntos
Ocitócicos/uso terapêutico , Ocitocina/uso terapêutico , Síndrome de Prader-Willi/tratamento farmacológico , Administração Intranasal , Ensaios Clínicos como Assunto , Humanos , Ocitócicos/administração & dosagem , Ocitocina/administração & dosagem
13.
Res Dev Disabil ; 72: 140-151, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-29145013

RESUMO

BACKGROUND: Children with a developmental disability are three to four times more likely than their typically developing peers of developing significant emotional and behavioural problems. There is strong evidence to suggest that individual biological and psychological factors interact with family functioning to precipitate and perpetuate these problems. AIMS: This study examined the psychometric properties of a brief measure, the Parent and Family Adjustment Scales (PAFAS) for use with parents of children with a developmental disability. METHODS: A sample of 914 parents of children (M=6.27years) with a developmental disability participated in the study. Disabilities included Autism Spectrum Disorder and Intellectual Disability RESULTS: A confirmatory factor analysis supported a 16-item, four factor model of PAFAS Parenting, and an 11-item, three factor model of PAFAS Family Adjustment. The Parenting Scale measures parental consistency, coercive practices, use of encouragement and the quality of parent-child relationship. The Family Adjustment Scale measures parental emotional adjustment and partner and family support in parenting. CONCLUSIONS: The current study indicated that the PAFAS demonstrates promise as a brief measure of multiple domains of family functioning important for families who have a child with a developmental disability.


Assuntos
Deficiências do Desenvolvimento/psicologia , Relações Pais-Filho , Poder Familiar/psicologia , Pais/psicologia , Adulto , Criança , Ajustamento Emocional , Saúde da Família , Feminino , Humanos , Masculino , Psicometria , Apoio Social
14.
Am J Med Genet C Semin Med Genet ; 175(3): 362-367, 2017 09.
Artigo em Inglês | MEDLINE | ID: mdl-28834083

RESUMO

Prader-Willi Syndrome (PWS) is a genetic disorder characterized by infantile hypotonia, hyperphagia, hypogonadism, growth hormone deficiency, intellectual disability, and severe emotional and behavioral problems. The brain mechanisms that underpin these disturbances are unknown. Diffusion tensor imaging (DTI) enables in vivo investigation of the microstructural integrity of white matter pathways. To date, only one study has used DTI to examine white matter alterations in PWS. However, that study used selected regions of interest, rather than a whole brain analysis. In the present study, we used diffusion tensor and magnetic resonance (T 1-weighted) imaging to examine microstructural white matter changes in 15 individuals with PWS (17-30 years) and 15 age-and-gender-matched controls. Whole-brain voxel-wise statistical analysis of FA was carried out using tract-based spatial statistics (TBSS). Significantly decreased fractional anisotropy was found localized to the left hemisphere in individuals with PWS within the splenium of the corpus callosum, the internal capsule including the posterior thalamic radiation and the inferior frontal occipital fasciculus (IFOF). Reduced integrity of these white matter pathways in individuals with PWS may relate to orientating attention, emotion recognition, semantic processing, and sensorimotor dysfunction.


Assuntos
Corpo Caloso/fisiopatologia , Imagem de Tensor de Difusão , Síndrome de Prader-Willi/fisiopatologia , Substância Branca/fisiopatologia , Adolescente , Adulto , Anisotropia , Corpo Caloso/diagnóstico por imagem , Feminino , Humanos , Imageamento por Ressonância Magnética , Masculino , Síndrome de Prader-Willi/diagnóstico por imagem , Síndrome de Prader-Willi/genética , Substância Branca/diagnóstico por imagem , Adulto Jovem
15.
J Paediatr Child Health ; 53(10): 963-969, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28661061

RESUMO

AIM: To examine socio-demographic factors associated with maternal help-seeking for child developmental concerns in a longitudinal birth cohort study. An understanding of these factors is critical to improving uptake of services to maximise early identification and intervention for developmental concerns. METHODS: A birth cohort was recruited from the post-natal wards of two teaching hospitals and through community nurses in South Western Sydney, Australia, between November 2011 and April 2013. Of the 4047 mothers approached, 2025 consented to participate (response rate = 50%). Socio-demographic and service use information was collected after the child's birth and when the child was 18 months of age. Sources of help were divided into three categories (formal health services, other formal services and informal supports) and compound variables were created by summing the number of different sources identified by mothers. RESULTS: Significantly more sources of help were intended to be used and/or actually accessed by mothers born in Australia, whose primary language was English, with higher levels of education and annual household income, and among mothers of first-born children. CONCLUSIONS: Developmental concerns are known to increase with increased psychosocial adversity. Our findings of reduced intent to access and use of services by socio-economically disadvantaged families and those from culturally and linguistically diverse backgrounds suggests that an inverse care effect is in operation whereby those children with the greatest health needs may have the least access to services. Possible explanations for this, and recommendations for improving service accessibility for these populations through targeted and culturally appropriate services, are discussed.


Assuntos
Desenvolvimento Infantil , Demografia , Comportamento de Busca de Ajuda , Mães/psicologia , Austrália , Criança , Serviços de Saúde da Criança , Diagnóstico Precoce , Feminino , Hospitais de Ensino , Humanos , Estudos Longitudinais , Masculino , Inquéritos e Questionários
16.
Australas Psychiatry ; 25(5): 481-485, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28462590

RESUMO

OBJECTIVE: Adolescents with intellectual disability have increased rates of psychopathology compared with their typically developing peers and present to hospital more frequently for ambulant conditions. The aim of this study is to describe the psychopathology and related characteristics of a sample of adolescents with intellectual disability who presented to general hospital services. METHOD: We investigated a cohort of adolescents with intellectual disability in South East Queensland, Australia between January 2006 and June 2010. Demographic and clinical data were obtained via mailed questionnaires and from general practice notes. Psychopathology was measured with the Short Form of the Developmental Behaviour Checklist. RESULTS: Of 98 individuals presenting to hospital, 71 (72.5%) had significant levels of psychopathology. Unknown aetiology for the intellectual disability was associated with presence of problem behaviours. Adolescents with more severe intellectual disability were more likely to have major problem behaviours. Co-morbid physical health issues were not associated with psychopathology. Only 12 (12.1%) adolescents had undergone specialized mental health intervention. CONCLUSIONS: The general hospital environment may offer opportunities for liaison psychiatry services to screen and provide management expertise for adolescent individuals with intellectual disability presenting for physical health issues.


Assuntos
Hospitais Gerais/estatística & dados numéricos , Deficiência Intelectual , Transtornos Mentais/terapia , Comportamento Problema , Adolescente , Estudos de Coortes , Comorbidade , Feminino , Humanos , Deficiência Intelectual/epidemiologia , Masculino , Transtornos Mentais/epidemiologia , Queensland/epidemiologia
17.
BMC Health Serv Res ; 17(1): 228, 2017 03 22.
Artigo em Inglês | MEDLINE | ID: mdl-28330490

RESUMO

BACKGROUND: Regular health visits for parents with young children provide an opportunity for developmental surveillance and anticipatory guidance regarding common childhood problems and help to achieve optimal developmental progress prior to school entry. However, there are few published reports from Australian culturally and linguistically diverse (CALD) communities exploring parents' experiences for accessing child health surveillance programs. This paper aims to describe and explain parental experiences for accessing developmental surveillance and anticipatory guidance for children. METHODS: Qualitative data was obtained from 6 focus groups (33 parents) and seven in-depth interviews of CALD parents recruited from an area of relative disadvantage in Sydney. Thematic analysis of data was conducted using an ecological framework. RESULTS: An overarching theme of "awareness-beliefs-choices" was found to explain parents' experiences of accessing primary health care services for children. "Awareness" situated within the meso-and macro-systems explained parents knowledge of where and what primary health services were available to access for their children. Opportunities for families to obtain this information existed at the time of birth in Australian hospitals, but for newly arrived immigrants with young children, community linkages with family and friends, and general practitioner (GPs) were most important. "Beliefs" situated within the microsystems included parents' understanding of their children's development, in particular what they considered to be "normal" or "abnormal". Parental "choices", situated within meso-systems and chronosystems, related to their choices of service providers, which were based on the proximity, continuity, purpose of visit, language spoken by the provider and past experience of a service. CONCLUSIONS: CALD parents have diverse experiences with primary health care providers which are influenced by their awareness of available services in the context of their duration of stay in Australia. The role of the general practitioner, with language concordance, suggests the importance of diversity within the primary care health workforce in this region. There is a need for ongoing cultural competence training of health professionals and provisions need to be made to support frequent use of interpreters at general practices in Australia.


Assuntos
Desenvolvimento Infantil , Serviços de Saúde da Criança/normas , Diversidade Cultural , Acessibilidade aos Serviços de Saúde/normas , Criança , Serviços de Saúde Comunitária/organização & administração , Competência Cultural , Emigrantes e Imigrantes/estatística & dados numéricos , Feminino , Grupos Focais , Pessoal de Saúde/estatística & dados numéricos , Humanos , Idioma , New South Wales , Pais , Atenção Primária à Saúde/organização & administração , Fatores Socioeconômicos
18.
Res Dev Disabil ; 62: 230-237, 2017 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-28094084

RESUMO

BACKGROUND: Mowat-Wilson Syndrome (MWS) is caused by deletion/mutation of the ZEB2 gene on chromosome 2q22. MWS is characterized by a distinctive facial appearance, severe intellectual disability and other anomalies, e.g. seizures and/or Hirschsprung disease (HSCR). Most individuals have a sociable demeanor, but one third show psychological problems. AIMS: The aim was to investigate incontinence and psychological problems in MWS. METHODS AND PROCEDURES: 26 children (4-12 years), 13 teens (13-17 years) and 8 adults (>18years) were recruited through a MWS support group. The Parental Questionnaire: Enuresis/Urinary Incontinence, as well as the Developmental Behaviour Checklist (DBC) were completed by parents or care-givers. OUTCOMES AND RESULTS: 97.7% of persons with MWS had incontinence (nocturnal enuresis 74.4%; daytime urinary incontinence 76.2%; fecal incontinence 81.4%). Incontinence remained high over age groups (children 95.8%, teens 100%, adults 100%). 46.2% of children, 25% of teens and 37.5% of adults exceeded the clinical cut-off on the DBC. The ability to use the toilet for micturition improved with age. CONCLUSIONS AND IMPLICATIONS: MWS incontinence rates are very high. All had physical disabilities including anomalies of the genitourinary and gastrointestinal tract. Due to the high prevalence rates, a screening for incontinence and psychological problems in MWS is recommended.


Assuntos
Enurese/epidemiologia , Incontinência Fecal/epidemiologia , Doença de Hirschsprung/epidemiologia , Deficiência Intelectual/epidemiologia , Transtornos Mentais/epidemiologia , Microcefalia/epidemiologia , Adolescente , Adulto , Criança , Pré-Escolar , Comorbidade , Enurese/fisiopatologia , Fácies , Incontinência Fecal/fisiopatologia , Feminino , Cardiopatias Congênitas/epidemiologia , Doença de Hirschsprung/fisiopatologia , Doença de Hirschsprung/psicologia , Humanos , Deficiência Intelectual/fisiopatologia , Deficiência Intelectual/psicologia , Masculino , Transtornos Mentais/psicologia , Microcefalia/fisiopatologia , Microcefalia/psicologia , Prevalência , Convulsões/epidemiologia , Inquéritos e Questionários , Anormalidades Urogenitais/epidemiologia , Anormalidades Urogenitais/fisiopatologia , Adulto Jovem
19.
Autism ; 21(2): 231-241, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27121243

RESUMO

Individuals with an autism spectrum disorder commonly have limited social participation. This study aimed to examine the similarities and differences of everyday participation among males and females with autism spectrum disorder in Australia and Taiwan, using an experience sampling methodology. A total of 14 Australians (4 males, aged 16-43 years) and 16 Taiwanese (12 males, aged 19-45 years) with autism spectrum disorder who are cognitively able were asked to carry a device which prompted them seven times per day for 7 days, to record everyday participation: where they were, what they were doing, and who they were with. Multilevel analyses were used to identify the relationships between everyday participation and associated factors including gender, country of residence, clinical severity of autism spectrum disorder, and social anxiety. The results showed that Taiwanese participants were more likely to stay at home than Australian participants. However, female participants were more likely to engage in social situations than males. Furthermore, participants with fewer autism spectrum disorder symptoms and those with higher levels of social anxiety were less likely to engage in social interactions. This study sheds light on ways that culture and gender affect social participation and highlights the relationship of social anxiety to social participation. The findings have implications for interventions for social participation.


Assuntos
Transtorno do Espectro Autista/psicologia , Comparação Transcultural , Participação Social , Atividades Cotidianas/psicologia , Adolescente , Adulto , Ansiedade/etnologia , Ansiedade/psicologia , Austrália , Transtorno do Espectro Autista/etnologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Índice de Gravidade de Doença , Fatores Sexuais , Participação Social/psicologia , Taiwan , Adulto Jovem
20.
Am J Occup Ther ; 70(5): 7005220040p1-8, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27548868

RESUMO

We explored the effectiveness of a sensory-based, family-centered coaching approach to changing problematic routines for young children with autism. Three mothers of young children with autism, atypical sensory processing, and global developmental delay each participated in a single-case experimental ABA design study. Mothers selected a problematic daily routine linked to sensory challenges as the focus of four intervention sessions provided in the home. Changes in mothers' perceptions of the children's behavior were the primary outcome, measured daily on a visual analog scale. Visual and descriptive analyses were undertaken. The sensory-based, family-centered coaching approach showed promise for changing sensory-related problem behaviors of young children with autism, but the degree and maintenance of the intervention effect varied among participants.

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