RESUMO
[This corrects the article DOI: 10.1007/s40617-022-00754-0.].
RESUMO
This initial open feasibility trial reports on feasibility and preliminary effectiveness of the manualized, group-based psychoeducational intervention for grandparents of preschool-aged children with ASD provided by the outpatient habilitation services in Stockholm, Sweden. One hundred and twenty non-custodial grandparents participated in a 6-h intervention program. The study demonstrated good feasibility: 114 (95%) grandparents completed both pre- and post-intervention measures and evaluations and reported high intervention acceptability. The results also indicated that grandparents increased their knowledge about ASD from pre-intervention to post-intervention, gained skills about strategies of supporting their grandchildren and adult children, and appreciated the opportunity to meet and share experiences with other grandparents. Follow-up with a randomized controlled trial design is needed to firmly establish efficacy of this intervention.
Assuntos
Transtorno do Espectro Autista , Avós , Adulto , Pré-Escolar , Humanos , Estudos de Viabilidade , Transtorno do Espectro Autista/terapia , Filhos Adultos , SuéciaRESUMO
BACKGROUND: Children on the autism spectrum may receive Early Intensive Behavioural Intervention (EIBI) in Sweden to support development by providing learning opportunities. However, research suggests a need to improve the quality of their learning environment. AIM: This pre-registered study (#NCT03634761) aimed to evaluate the Swedish Autism Program Environment Rating Scale (APERS-P-SE) as a means to promote the quality of the pre-school learning environment for children on the autism spectrum, along with outcomes for these children, and their pre-school staff. MATERIAL AND METHODS: In a quasi-experimental study, pre-school staff (n = 35) conducted either EIBI supported by in-service training and on-site coaching based on APERS-P-SE assessment (at k = 9 preschools) or EIBI only (k = 8), during an 8-months period. RESULTS: The quality of the immediate learning environment (primary outcome) increased significantly in the EIBI/APERS-P-SE preschools. However, changes in child and pre-school staff measures were not significant. CONCLUSIONS AND SIGNIFICANCE: In-service training and on-site coaching based on APERS-P-SE assessments can increase the quality of the learning environment in Swedish pre-school. Studies of longer duration and larger sample size are required to determine if using the APERS-P-SE can also achieve desired behavioural change for children-, and impact pre-school staff applying EIBI.
Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Criança , Pré-Escolar , Humanos , Transtorno do Espectro Autista/terapia , Terapia Comportamental , Aprendizagem , SuéciaRESUMO
Behavior analysts are not recognized or regulated as a distinct profession in Europe. For the most part, European behavior analysts adhered to the standards set by the U.S.-based Behavior Analyst Certification Board (BACB). However, the BACB certification has not been recognized officially in any European jurisdiction. The recent decision by the BACB to discontinue eligibility of non-U.S. residents to apply for the BCBA exam by the end of 2022 has brought the issue of professional regulation outside of the United States into sharp focus. This article offers a snapshot in time of professional recognition of behavior analysts in 21 European countries. It stems from the Erasmus+ funded EuroBA project and its Professional Advisory Group (PAG). The EuroBA project aims to develop common standards and competences for behavior analysts to facilitate national regulation and mutual recognition across Europe.
RESUMO
PURPOSE: Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a relatively new diagnosis characterized by an abrupt and dramatic onset of obsessive-compulsive disorder (OCD), together with neuropsychiatric symptoms. Very little research has been done to understand the experience of being a parent of a child with PANS. The current study aimed to explore aspects related to parental stress in parents of children with PANS. METHOD: The study employed in-depth semi-structured individual interviews with 13 parents of children diagnosed with PANS. Parents were recruited via an announcement on the websites of patient organizations, and in waiting rooms at child medical clinics. An inductive qualitative content analysis approach was used as a guide for analysis of data. RESULTS: The analysis of interviews identified five categories of parents' experiences of stress related to: (1) being effected by the symptoms; (2) experiencing the symptoms over and over again; (3) having no control; (4) obtaining medical treatment is challenging; and (5) managing problems. The results are discussed in relation to the Transactional Theory of Stress and Coping. CONCLUSIONS: the study illuminates how parents' perceptions of the child's symptoms, parents' strategies for managing problems, as well as experiences related to healthcare providers, may increase or decrease parental stress.
Assuntos
Transtorno Obsessivo-Compulsivo , Infecções Estreptocócicas , Doenças Autoimunes , Criança , Humanos , Transtorno Obsessivo-Compulsivo/psicologia , Pais , Infecções Estreptocócicas/diagnóstico , Infecções Estreptocócicas/psicologia , SuéciaRESUMO
In Sweden, young autistic children typically attend community-based preschool programs, which may not be adapted to their needs. In the current study, stakeholders to autistic children receiving Early Intensive Behavioral Intervention were interviewed following a quasi-randomized study (#NCT03634761) aimed at improving the preschool program quality using the Swedish version of the Autism Program Environment Rating Scale (APERS). Stakeholders provided their perceptions and experiences concerning key factors for high quality preschool programs as well as well as their experiences of the abovementioned APERS study. Applying thematic analysis, stakeholder groups differed in what they emphasized, but all highlighted staff's competence, children's inclusion and participation, collaboration, and the learning environment as key program areas that had been positively influenced by the APERS-based intervention.
Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Terapia Comportamental , Criança , Pré-Escolar , Intervenção Educacional Precoce , Humanos , Instituições AcadêmicasRESUMO
BACKGROUND: Research suggests that families' knowledge and cultural perceptions of autism spectrum disorder (ASD), and beliefs about its etiology and prognosis, can affect parents' recognition of the first signs of autism in their children and influence help seeking and treatment decisions. OBJECTIVE: This study investigated explanatory models of autism among parents of young children with ASD in the multicultural context of Sweden. METHOD: Seventeen parents from diverse cultural, ethnic and linguistic backgrounds participated in semi-structured interviews. A deductive approach to qualitative content analysis was used to analyze data. Five domains of the Explanatory Model supplementary module of the Cultural Formulation Interview (CFI) were used as coding categories, operationalized as 'Parents' understanding of autism'; 'Autism prototypes'; 'Causal explanations'; 'Course of autism', and 'Help seeking and treatment expectations'. RESULTS: The results showed that parents' prior knowledge of autism and experience of young children's typical developmental trajectories, as well as the opinions of children's grandparents and preschool teachers, affected symptom recognition and help seeking. There were differences in parents' explanatory models before and after ASD diagnosis. Initial interpretations of the disorder included medical conditions and reaction to environmental influences, while genetic, supernatural/religious factors, and vaccinations were mentioned as definite causes after obtaining a clinical diagnosis. Parents also held multiple explanatory models, influenced by the views of family members and information obtained from media or from health care professionals. Parents' treatment decisions included use of available state-funded support services, and complementary and alternative treatments. CONCLUSION: The results demonstrate the utility of the CFI's Explanatory Model supplementary module in autism research. Implications for clinical practice are discussed.
Assuntos
Transtorno do Espectro Autista/epidemiologia , Diversidade Cultural , Modelos Teóricos , Pais , Adulto , Transtorno do Espectro Autista/terapia , Criança , Pré-Escolar , Terapias Complementares , Família , Humanos , Lactente , Aprendizagem , Fatores Socioeconômicos , SuéciaRESUMO
Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents' Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents' demographics and perceptions of needs; grandparents' needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents' needs essential for planning and provision of quality family-centered early intervention services.
Assuntos
Transtorno Autístico/psicologia , Avós/psicologia , Avaliação das Necessidades , Idoso , Transtorno Autístico/reabilitação , Criança , Cuidado da Criança/psicologia , Pré-Escolar , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Apoio Social , Inquéritos e Questionários , SuéciaRESUMO
Increasing rates of autism spectrum disorder (ASD) and younger age at diagnosis pose a challenge to preschool intervention systems. In Sweden, most young autistic children receive intervention service in community-based preschool programs, but no tool is yet available to assess the quality of the preschool learning environment. This study adapted the Autism Program Environment Rating Scale Preschool/Elementary to Swedish community context (APERS-P-SE). Following translation and a multistep modification process, independent experts rated the content validity of the adaptation. Findings indicate high cross-cultural validity of the adapted APERS-P-SE. The cultural adaption process of the APERS-P-SE highlights similarities and differences between the American and Swedish preschool systems and their impact on early ASD intervention.
Assuntos
Transtorno do Espectro Autista/reabilitação , Comparação Transcultural , Intervenção Educacional Precoce/normas , Criança , Pré-Escolar , Intervenção Educacional Precoce/métodos , Meio Ambiente , Feminino , Humanos , Masculino , Instituições Acadêmicas/normas , Suécia , TraduçõesRESUMO
Although the incidence of autism spectrum disorders is increasing worldwide, there is a shortage of professionals trained to provide effective interventions. The article describes an advanced university course in Applied Behaviour Analysis (ABA) and autism tailored to meet the needs of Swedish professionals from multiple disciplines. The course implemented both blended-learning technologies (web, telecommunication, and in vivo) and guided-design (problem-solving) exercises to promote the scientist-practitioner model. Overall, students advanced their skills related to identifying extant scientific literature, choosing appropriate single-subject design evaluation methods, and critically analysing the effects of attempted interventions. Students rated the course as having high social validity and predicted the course content would positively affect their professional practice. The relevance of the course and future directions are discussed in the context of meeting the global need for effective autism intervention professionals.