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OBJECTIVES: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. DESIGN, SETTING AND PARTICIPANTS: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. RESULTS: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. CONCLUSIONS: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. PATIENT AND PUBLIC CONTRIBUTION: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
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Children with intellectual disability experience significant challenges in accessing and receiving high-quality healthcare leading to poorer health outcomes and negative patient experiences. Families of these children often report a need for healthcare staff to better understand, communicate, and collaborate for better care while staff acknowledge a lack of training. To address this, we utilised an action research framework with a pre- and post- survey to evaluate an integrated continuing professional development and quality improvement program combining strategies from education, behavioural psychology and quality improvement that was delivered in two departments within a tertiary children's Hospital in Metropolitan Sydney in 2019-2020. Parents reported noticeable changes in the clinical practice of staff, and staff acknowledged and attributed their shift in behaviour to raising awareness and discussions around necessary adaptations. The program demonstrates a novel method for knowledge translation to practice and systems improvements.
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Deficiência Intelectual , Humanos , Criança , Segurança do Paciente , Atenção à SaúdeRESUMO
INTRODUCTION: Identifying differences in outcome of basilar artery occlusion (BAO) between males and females may be useful in aiding clinical management. Recent studies have demonstrated widespread underrepresentation of women in acute stroke clinical trials. This international multicentre study aimed to determine sex differences in outcome after mechanical thrombectomy (MT) for patients with acute BAO. METHODS: We performed a retrospective analysis of consecutive patients with BAO who had undergone MT in seven stroke centres across five countries (Singapore, Taiwan, United Kingdom, Sweden, and Germany), between 2015 and 2020. Primary outcome was a favourable functional outcome measured by a modified Ranking Scale (mRS) of 0-3 at 90 days. Secondary outcomes were mRS 0-3 upon discharge, mortality, symptomatic intracranial haemorrhage (sICH) and subarachnoid haemorrhage (SAH). RESULTS: Among the 322 patients who underwent MT, 206 (64.0%) patients were male and 116 (36.0%) were female. Females were older than males (mean ± SD 70.9 ± 14.3 years vs. 65.6 ± 133.6 years; p = 0.001) and had higher rates of atrial fibrillation (38.9% vs. 24.2%; p = 0.012). Time from groin puncture to reperfusion was shorter in females than males (mean ± SD 57.2 ± 37.2 min vs. 71.1 ± 50.9 min; p = 0.021). Despite these differences, primary and secondary outcome measures were similar in females and males, with comparable rates of favourable 90-day mRS scores (mean ± SD 46 ± 39.7 vs. 71 ± 34.5; OR = 1.20; 95% confidence interval [CI] = 0.59-2.43; p = 0.611), favourable discharge mRS scores (mean ± SD 39 ± 31.6 vs. 43 ± 25.9; OR = 1.38; 95% CI = 0.69-2.78; p = 0.368) and in-hospital mortality (mean ± SD 30 ± 25.9 vs. 47 ± 22.8; OR = 1.15; 95% CI = 0.55-2.43; p = 0.710. Rates of complications such as sICH (mean ± SD 5 ± 4.3 vs. 9 ± 4.4; OR = 0.46; 95% CI = 0.08-2.66; p = 0.385) and SAH (mean ± SD 4 ± 3.4 vs. 5 ± 2.4; OR = 0.29; 95% CI = 0.03-3.09; p = 0.303) comparably low in both groups. CONCLUSION: Females achieved comparable functional outcomes compared with males after undergoing MT for BAO acute ischemic stroke.
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Procedimentos Endovasculares , AVC Isquêmico , Acidente Vascular Cerebral , Artéria Basilar , Estudos de Coortes , Procedimentos Endovasculares/efeitos adversos , Feminino , Humanos , Hemorragias Intracranianas/etiologia , AVC Isquêmico/diagnóstico por imagem , AVC Isquêmico/terapia , Masculino , Estudos Retrospectivos , Acidente Vascular Cerebral/diagnóstico por imagem , Acidente Vascular Cerebral/terapia , Trombectomia/efeitos adversos , Resultado do TratamentoRESUMO
AIM: To qualitatively explore reported clinical incidents of children with intellectual disability aged 0 to 18 years. METHOD: A secondary qualitative evaluation using latent content analysis was used on retrospective hospital incident management reporting data (1st January-31st December 2017) on 1367 admissions for 1018 randomly selected patients admitted to two tertiary children's hospitals in New South Wales, Australia. Sex and age at admission in children with and without intellectual disability: 83 (43.7%) versus 507 (43.1%) females and 107 (56.3%) versus 670 (56.9%) males, p=0.875; median age 3 years (0-18y) versus 4 years (0-18y), p=0.122. Of these, 44 patient safety incident reports for children with intellectual disability (sex, SD, and range) and 167 incident reports for children without intellectual disability (sex, SD, and range) were found and analysed. RESULTS: Ten themes were synthesized from the data and represented the groups with and without intellectual disability. Children with intellectual disability had a significantly higher proportion of care issues identified by their parents. They also had higher rates of multiple reported clinical incidents per admission compared to children without intellectual disability. INTERPRETATION: Mechanisms to advocate and raise patient safety issues for children with intellectual disability are needed. Partnerships with parents and training of staff in reporting clinical incidents for this population would enhance the embedding of reasonable adaptations into incident management systems for ongoing monitoring and improvement. WHAT THIS PAPER ADDS: Children with intellectual disability experienced multiple patient safety incidents per admission compared to children without intellectual disability. Children with intellectual disability had significantly increased rates of parent-identified incidents. Issues with medication, communication, delays in diagnosis and treatment, and identification of deterioration were noted.
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Deficiência Intelectual , Adolescente , Criança , Pré-Escolar , Coleta de Dados , Feminino , Humanos , Lactente , Recém-Nascido , Deficiência Intelectual/epidemiologia , Masculino , Segurança do Paciente , Estudos Retrospectivos , Gestão de RiscosRESUMO
BACKGROUND: Children with intellectual disability are vulnerable to adverse events in hospital due to limited staff skills and system safeguards. METHOD: A systematic review of the literature explored healthcare staff (HCS) experiences in providing care for children and young persons with intellectual disability in hospital using thematic analysis. RESULTS: Eleven of the 735 publications extracted identified the following themes: distress, communication, partnerships, identification, training and education and optimising care. Consistent findings suggest that HCS feel unskilled in providing care for the child with intellectual disability in hospital settings. HCS recognised the role of parents as experts of their child but also feel unsettled when challenged by them. Skills in communicating with the child, developing partnerships with parents, having identification systems to plan for reasonable adjustments was key to improving care. CONCLUSIONS: Organisational advocacy, practical skills training in identification, reasonable adjustments and improved attitudes are important for HCS to provide safe and quality care.
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Deficiência Intelectual , Criança , Atenção à Saúde , Hospitais , Humanos , Pais , Qualidade da Assistência à SaúdeRESUMO
AIM: People with developmental disabilities (DDs) experience significant barriers accessing and receiving optimal health care resulting in poorer health-care outcomes. Continuing professional development (CPD) represents an effective means to alter health-care staff behaviour to improve the care of people with DDs. However, given the scepticism regarding the effectiveness of certain CPD models' ability to alter learner's workplace behaviour, the current pilot study developed and determined the feasibility of a novel CPD programme aimed at improving the health care provided to children with DDs. METHODS: Motivation for Change (MFC) is a novel CPD programme based on empirically based behaviour and educational strategies including motivational interviewing, flipped classroom and process mapping. It utilises input of patients, practitioners, and family members during administration of the programme. MFC was administered with 14 staff members in a Sydney Children's Hospital Sleep service. RESULTS: After MFC engagement, staff reported significant improvements in their knowledge of behavioural characteristics of children with DDs, the difficulties they face, how best to support them within the learner's work setting and confidence in working with children with DDs. There was a non-significant decline in their reported need for further training and expressed high level of satisfaction with the MFC programme. CONCLUSION: MFC represents a feasible means of providing CPD to health-care staff but further research is needed to determine objective clinical behavioural change. Evaluation of the impact on patient health outcomes, parent/child satisfaction, staff sustainability and overall system functioning is also needed. It may represent an effective model of CPD for other targets of health-care improvement.
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Motivação , Melhoria de Qualidade , Criança , Atenção à Saúde , Deficiências do Desenvolvimento/terapia , Humanos , Projetos PilotoRESUMO
BACKGROUND/OBJECTIVES: The use of high-cost, off-label, unsubsidised drugs has become valuable in the management of dermatology patients with challenging conditions unresponsive to conventional therapy. Currently, there is no dedicated funding and a paucity of evidence for such drugs. The aim of this audit was to review outcomes and costs. METHODS: A retrospective clinical audit of high-cost off-label dermatology drug applications to the High Cost Drug's Subcommittee was undertaken at a tertiary public hospital in Brisbane, Queensland, between 2002 and 2013. RESULTS: Of 28 applications, 25 were approved. The medications included thalidomide, mycophenolate mofetil, cyclosporin, infliximab, rituximab and adalimumab. Over 70% of patients responded to treatment. Individual annual costs for these medications ranged from $2068 to $36 984. Adverse effects resulted in drug withdrawal in five cases. CONCLUSIONS: Despite the absence of dedicated funding for high-cost drugs and a rigorous committee approval process, most applications were approved, of which >70% benefited from treatment. This audit provides useful clinical experience with off-label use of high-cost drugs in difficult dermatological conditions.
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Fármacos Dermatológicos/economia , Fármacos Dermatológicos/uso terapêutico , Uso Off-Label , Dermatopatias/tratamento farmacológico , Adalimumab/economia , Adalimumab/uso terapêutico , Adulto , Idoso , Idoso de 80 Anos ou mais , Ciclosporina/economia , Ciclosporina/uso terapêutico , Dermatologia , Feminino , Humanos , Infliximab/economia , Infliximab/uso terapêutico , Masculino , Auditoria Médica , Pessoa de Meia-Idade , Ácido Micofenólico/economia , Ácido Micofenólico/uso terapêutico , Queensland , Estudos Retrospectivos , Rituximab/economia , Rituximab/uso terapêutico , Talidomida/economia , Talidomida/uso terapêuticoRESUMO
BACKGROUND AND OBJECTIVES: Naevi may change in size, shape and colour due to multiple inherent and external factors. We observed naevi changing size in adults at high risk of melanoma, and assessed associations of change with demographic factors, skin type, sites of naevi and history of melanoma. METHODS: In total, 29 participants with a personal or first-degree family history of melanoma or those deemed at high risk with multiple naevi of variable morphologies had all melanocytic naevi 0.5-1 cm imaged and their maximum diameter recorded. Maximum diameters from repeat imaging of naevi 12 months later were compared to baseline measurements. Newly appearing naevi ≥5 mm and naevi that grew or decreased in size by 20% or more were defined as changeable naevi. Associations between changeable naevi and participants' age, sex, skin type, body sites of naevi and personal and family history of melanoma were assessed. RESULTS: There was no difference in changeable naevus rates among sex, age or skin type. Among the body sites, the head and neck were most likely to have changeable naevi, and the upper limbs the least likely. A family history of melanoma almost tripled the likelihood of having changeable naevi compared with those without both personal and family melanoma history. CONCLUSIONS: Naevi can continue to change in size throughout adulthood, showing both increases and decreases in size as well as the appearance of new naevi. This has important clinical implications, in particular for sequential body imaging used for the detection of melanoma.
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Melanoma/patologia , Nevo Pigmentado/patologia , Neoplasias Cutâneas/patologia , Adulto , Fatores Etários , Extremidades , Feminino , Cabeça , Humanos , Masculino , Melanoma/genética , Pescoço , Fatores Sexuais , Neoplasias Cutâneas/genética , Tronco , Carga TumoralRESUMO
Families can spend years waiting for a developmental assessment. We sought to understand supports caregivers had accessed by the time of their child's first multi-disciplinary developmental assessment, the supports caregivers wanted, and the barriers caregivers reported to accessing these supports. We also sought to understand how government funding schemes (the National Disability Insurance Scheme) and sociodemographic factors influenced access to supports. Caregivers were emailed questionnaires on sociodemographic background and intervention history prior to their child's developmental assessment at a tertiary diagnostic and assessment service. Results from 202 caregivers showed most children were receiving less than 2 hours of support each week at assessment. The most common accessed supports were from general practitioners and pediatricians. Caregivers reported behavioral therapists (41%) and psychologists (29%) as the most desired but inaccessible child supports. Half of caregivers nominated a need for parenting interventions. The most frequent barriers to accessing child supports were wait lists, finance, and knowledge. Government funding improved access to the total number of services received (from 2.7 to 5.2 different services), but for disability specific services only (e.g., speech and occupational therapy). Results highlighted disparities for families without government funding, impacting certain groups (e.g., children over 7 years) and services (e.g., mental health). Socioeconomic disadvantage, parental separation, and, surprisingly, being from a non-culturally/linguistically diverse background were associated with fewer services and more barriers. Results highlight the need to facilitate access to supports for families to align with existing recommendations.
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Transtorno do Espectro Autista , Terapia Ocupacional , Criança , Humanos , Cuidadores/psicologia , Transtorno do Espectro Autista/psicologia , Pais , Saúde MentalRESUMO
AIM: To elicit experiences of parents of children with neurodevelopmental conditions using a new perioperative pathway. METHOD: Parents of children accessing an adapted perioperative clinical pathway in a tertiary children's hospital between July 2019 and December 2020 were invited to participate. A mixed method study was conducted comprising a short survey questionnaire followed by telephonic interviews. RESULTS: From 67 postal surveys sent out, 20 were completed. Six out of 20 parents participated in phone interviews and one parent submitted written prose. Parents were positive about their experiences. Six themes emerged: Negative past experiences (highlighting the need for adapted perioperative pathways); Reasonable adjustments (improving child and parent's hospital journey); Facilitating communication, convenience and collaboration; Parent's satisfaction and relief; Barriers to overcome and Areas in need of improvement were discussed. CONCLUSION: Parents of children with neurodevelopmental conditions report great satisfaction and relief from their experiences of a more efficient, streamlined and stress-free way for their child to have tests or procedures done. Parents report improved communication, convenience and collaboration with staff resulted in timely, safe and high-quality care.
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This qualitative study describes the development and evaluation of a clinical pathway to facilitate the implementation of catch-up vaccinations for children with significant needle fear, particularly in children with developmental disabilities. The Specialist Immunization Team, based at a tertiary level teaching children's hospital, participated in process mapping activities using Motivational Interviewing (MI) techniques and reflective discussions. Team members developed a clinical pathway by incorporating parental feedback from semistructured interviews and clinical expertise from within the team, facilitated by colleagues from the Child Development Unit. A process map was developed that included process strengths and touch points with an action plan that was discussed and agreed upon. A repeat process mapping activity was conducted 16 months later. Reports from parental feedback included: positive, efficient, and successful experiences of having their child undergo catch-up vaccinations. The experience empowered families for further procedures. Team members reported improvements in triaging appropriate children for the pathway, and an increase in confidence to interact and manage behaviors of children with significant anxiety and challenging behaviors. They also reported an increase in successful vaccinations with improved clinical judgment of facilitating the sedation pathway. This study demonstrates that using group facilitation using motivational interviewing in reflective discussions and process mapping utilizing parent and staff feedback in service improvement activities results in efficient and successful service delivery with improved patient outcomes.
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OBJECTIVES: Early developmental assessment is crucial for effective support and intervention. This study examined factors that contribute to (a) older child age when caregivers first became concerned about their child's development and (b) older child age at the point of entry into developmental and diagnostic assessment. We also quantified how factors contributed to risk of children not receiving an assessment by 5 years and considered the acceptability of electronic data capture for families. DESIGN: This cross-sectional study collected information about caregiver developmental concerns, family history and child characteristics. SETTING: Children and families entered a large, publicly funded hospital-based paediatric developmental assessment service. PARTICIPANTS: Consecutively enrolled children (N=916) aged 6 months to 17 years with neurodevelopmental concerns and their caregivers. MAIN OUTCOMES AND MEASURES: A developmental history questionnaire completed by caregivers. RESULTS: The average age that caregivers identified developmental concerns was 3.0 years of age but the average age of a receiving a developmental assessment was 6.6 years. Only 46.4% of children received a diagnostic assessment by 5 years of age, even though 88.0% of caregivers were concerned about their child's development by that age. Parental age, relationship status, education level, prior use of support services and being from a culturally and linguistically diverse background contributed to age at identification of concern, age at diagnostic assessment and the likelihood of receiving a diagnostic assessment by 5 years. Electronic data capture had high acceptability, with 88.2% of caregivers reporting a preference for electronic completion of questionnaires. CONCLUSIONS: The study shows a substantial delay in diagnostic assessments that leaves most vulnerable children without an assessment by school age and highlights contributors to delays. These delays highlight the complexity of delivering early intervention and support policies that rely on swift and appropriate developmental assessment to vulnerable families.
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Diagnóstico Tardio , Transtornos do Neurodesenvolvimento , Criança , Humanos , Adolescente , Pré-Escolar , Estudos Transversais , Pais , Desenvolvimento Infantil , Transtornos do Neurodesenvolvimento/diagnóstico , CuidadoresRESUMO
OBJECTIVE: To elicit patient safety issues pertaining to children and young people with intellectual disability in hospital from healthcare staff perspectives. This follows a previous paper of parent interviews of patient safety experiences of their child in hospital. DESIGN: Qualitative study. SETTING: We conducted semi-structured interviews and focus groups of staff of tertiary children's hospitals based on the domains of the Patient Safety Education Framework and using the framework methodology for data analysis. PARTICIPANTS: There were 29 female and 7 male staff aged between 27 and 70 years from a range of departments and specialties including ancillary staff. INTERVENTION: Questions based on the patient safety framework were developed from consultation with parents, researchers and clinicians exploring staff views and experiences of safety and quality care of these children in hospital. During April 2021 to May 2022, 22 interviews and 3 focus groups were conducted of staff who have had experience caring for children and young people with intellectual disability in the last 12 months in the hospital. RESULTS: Key themes elicited include Definition of Safety, Need to consider additional vulnerabilities of children and young people with intellectual disability in hospital, Communication is key to safe care, Parent and family perspectives on safe care, Management challenges compromising safety and Service system gaps in preventing, identifying and managing risk. CONCLUSIONS: Staff need to consider additional vulnerabilities, mitigate negative attitudes and biases towards better engagement and relationships with parents, children and young people of this population. Improvement of current systems that prevent the identification, prevention and management of risk and safety issues for this population need to be undertaken. Future developments include combining data from parent interviews, academic and grey literature in developing safety competencies in this population for training and education of staff across the health system.
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Deficiência Intelectual , Criança , Humanos , Masculino , Feminino , Adolescente , Deficiência Intelectual/terapia , Pais , Hospitais , Pesquisa Qualitativa , Atenção à SaúdeRESUMO
Children with neurodevelopmental conditions (NDCs), such as autism and attention-deficit/hyperactivity disorder (ADHD), frequently experience co-occurring mental health concerns. Little research has examined mental health symptoms in children attending developmental assessment services. This study profiled mental health symptoms in children with NDCs attending a hospital-based diagnostic service for their first diagnostic and developmental assessment. Participants were 232 children aged 1.96-17.51 years. Mental health concerns were assessed using the Child Behavior Checklist (CBCL), a caregiver-rated, questionnaire-based assessment of behavioural and emotional difficulties. Subclinical or clinically elevated internalising, externalising and total scores on the CBCL were reported in approximately 48% of preschool and 61% of school-age children. These increased prevalence rates, using the same cutoff scores, remained after excluding items specifically relating to neurodevelopmental concerns (36% preschool; 37% school-age children). More school-aged females reported elevated internalising problems, relative to males (67 % vs 48 %). The number of diagnoses impacted symptoms, with children who received two or more DSM-5 diagnoses showing a greater rate of subclinical or clinically elevated scores, relative to children who received one DSM-5 diagnosis. Our findings demonstrate that children attending developmental assessment services have considerable mental health needs. It is critical that mental health concerns are identified and addressed in children when they first present to developmental assessment services, and that service providers are equipped to provide appropriate resources and pathways to ongoing care.
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Transtorno do Deficit de Atenção com Hiperatividade , Transtornos do Neurodesenvolvimento , Masculino , Feminino , Humanos , Pré-Escolar , Criança , Saúde Mental , Transtornos do Neurodesenvolvimento/diagnóstico , Transtornos do Neurodesenvolvimento/epidemiologia , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Escolaridade , Instituições AcadêmicasRESUMO
LAY ABSTRACT: Despite long wait times, public paediatric developmental assessment services remain crucial for assessment of children. Assessment is a critical opportunity to guide the placement of supports to improve outcomes. There is little research examining how clinical assessment services conduct their assessments, present results and write reports to families. This study examined 85 reports provided to caregivers at a developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs. Recommendations related to autism diagnoses were actionable, but they rarely addressed comorbidities such as cognitive impairments or mental health. For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than recommended. Recommendations for future practice are provided so that consideration may be given to how to improve the quality and effectiveness of reports for families attending services.
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Transtorno do Espectro Autista , Transtorno Autístico , Criança , Humanos , Transtorno do Espectro Autista/psicologia , Cuidadores/psicologia , Transtorno Autístico/epidemiologia , Saúde Mental , ComorbidadeRESUMO
PURPOSE: Appropriate early intervention is beneficial but dependent on accurate and timely diagnoses. This has been affected by long waiting lists for face-to-face clinical services, in part due to pandemic lockdowns, with telehealth introduced in many services to continue clinical services. This pilot clinical study investigated the feasibility of integrating a specially-designed telepractice autism assessment tool into a tertiary diagnostic service. METHOD: Eighteen boys (2;4-5;1) participated in the study. Assessment was undertaken as per standard practice (parent interview, questionnaires, review of reports), with an additional telepractice assessment, included in place of face-to-face assessment, to provide clinicians with an observation of the children's communication, behaviours, and interests. Ten parents provided feedback via semi-structured interviews. RESULT: The TELE-ASD-PEDS was a feasible assessment tool in terms of administration, clinical experience, and information gained through the assessment process. Parents reported mostly positive experiences of the TELE-ASD-PEDS and made suggestions for improvements for future use of this tool. CONCLUSION: It is possible to obtain useful information about a child's autism-specific behaviours using the activities in the TELE-ASD-PEDS. This information can be combined with clinical history from parents using the DSM-5 framework to provide a gold standard assessment for autism.
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BACKGROUND: Significant challenges remain in the early identification of child developmental disabilities in the community. Implementing supports and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental disabilities, including autism. As part of a cluster randomised controlled trial, this study seeks to examine and compare the perspectives and experiences of Australian general practitioners (GPs) in relation to a digital developmental surveillance program for autism and usual care pathway, in general practice clinics. METHODS: A qualitative research methodology with semi-structured interviews and thematic inductive analysis underpinned by grounded theory was utilised. All GPs from South Western Sydney (NSW) and Melbourne (Victoria) who participated in the main program ("GP Surveillance for Autism") were invited to the interview. GPs who provided consent were interviewed either over online or in-person meeting. Interviews were audio-recorded, transcribed, and coded using NVivo12 software. Inductive interpretive approach was adopted and data were analysed thematically. RESULTS: Twenty-three GPs across the two sites (NSW: n = 11; Victoria: n = 12) agreed to be interviewed; data saturation had reached following this number of participants. Inductive thematic coding and analysis yielded eight major themes and highlighted common enablers such as the role of GPs in early identification and subsequent supports, enhanced communication between clinicians/professionals, relationship-building with patients, and having standardised screening tools. Specific facilitators to the feasibility and acceptability of a digital screening program for the early identification of developmental disabilities, including the early signs of autism, and encouraging research and education for GPs. However, several practical and socioeconomic barriers were identified, in addition to limited knowledge and uptake of child developmental screening tools as well as COVID-19 lockdown impacts. Common and specific recommendations involve supporting GPs in developmental/paediatrics training, streamlined screening process, and funding and resources in the primary healthcare services. CONCLUSIONS: The study highlighted the need for practice and policy changes, including further training of GPs alongside sufficient time to complete developmental checks and appropriate financial remuneration through a Medicare billing item. Further research is needed on implementation and scale up of a national surveillance program for early identification of developmental disabilities, including autism.
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Transtorno Autístico , COVID-19 , Clínicos Gerais , Idoso , Humanos , Criança , Estados Unidos , Transtorno Autístico/diagnóstico , Transtorno Autístico/epidemiologia , Austrália/epidemiologia , Atitude do Pessoal de Saúde , Controle de Doenças Transmissíveis , Medicare , Pesquisa Qualitativa , Atenção Primária à SaúdeRESUMO
BACKGROUND AND OBJECTIVES: Watch Me Grow - Electronic (WMG-E) platform is an online resource to enhance the capacity of general practitioners (GPs) to involve parents in developmental surveillance. The aim of this study was to evaluate the acceptability and perceived utility of WMG-E. METHOD: Semi-structured interviews were conducted with GPs/paediatricians (n = 6) and parents (n = 6). Focus groups were conducted with child and family health nurses (n = 25). Transcripts were analysed thematically. RESULTS: Participants indicated that WMG-E could empower clinicians and parents by enhancing health literacy about child developmental issues, but that it could also be disempowering if not used carefully. Clinicians mentioned being strategic at health service and public policy levels. A final theme was that of the need to balance widespread promotion with its targeted use. DISCUSSION: This study established the face validity of WMG-E, and reveals key lessons to inform the ways in which it is promoted and used.
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Médicos Legistas , Clínicos Gerais , Criança , Pré-Escolar , Eletrônica , Humanos , Pais , Pesquisa QualitativaRESUMO
OBJECTIVES: Implementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents'/caregivers' experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting. DESIGN: This qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, 'General Practice Surveillance for Autism', a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically. PARTICIPANTS: Twelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed. SETTINGS: All interviews were completed over the phone. RESULTS: There were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient-doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers. CONCLUSION: The findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting. TRIAL REGISTRATION NUMBER: ANZCTR (ACTRN12619001200178).
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Transtorno Autístico , Medicina Geral , Criança , Humanos , Transtorno Autístico/diagnóstico , Austrália/epidemiologia , Pesquisa Qualitativa , PaisRESUMO
INTRODUCTION: The increasing prevalence of developmental disorders in early childhood poses a significant global health burden. Early detection of developmental problems is vital to ensure timely access to early intervention, and universal developmental surveillance is recommended best practice for identifying issues. Despite this, there is currently considerable variation in developmental surveillance and screening between Australian states and territories and low rates of developmental screening uptake by parents. This study aims to evaluate an innovative web-based developmental surveillance programme and a sustainable approach to referral and care pathways, linking primary care general practice (GP) services that fall under federal policy responsibility and state government-funded child health services. METHODS AND ANALYSIS: The proposed study describes a longitudinal cluster randomised controlled trial (c-RCT) comparing a 'Watch Me Grow Integrated' (WMG-I) approach for developmental screening, to Surveillance as Usual (SaU) in GPs. Forty practices will be recruited across New South Wales and Queensland, and randomly allocated into either the (1) WMG-I or (2) SaU group. A cohort of 2000 children will be recruited during their 18-month vaccination visit or opportunistic visit to GP. At the end of the c-RCT, a qualitative study using focus groups/interviews will evaluate parent and practitioner views of the WMG-I programme and inform national and state policy recommendations. ETHICS AND DISSEMINATION: The South Western Sydney Local Health District (2020/ETH01625), UNSW Sydney (2020/ETH01625) and University of Queensland (2021/HE000667) Human Research Ethics Committees independently reviewed and approved this study. Findings will be reported to the funding bodies, study institutes and partners; families and peer-reviewed conferences/publications. TRIAL REGISTRATION NUMBER: ANZCTR12621000680864.