Journal of Autism and Developmental Disorders最新文献_第8页

Reinvigorating the Promise of the National Database for Autism Research (NDAR) to Advance Autism Knowledge. 重振自闭症研究国家数据库 (NDAR) 的承诺，促进自闭症知识的发展。

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-18 DOI: 10.1007/s10803-024-06641-7

Michelle L Stransky, Laneva Cobb, Nina Menon, Emily Barnard, Cynthia Belfleur, Lawrence Scahill, Jocelyn Kuhn

{"title":"Reinvigorating the Promise of the National Database for Autism Research (NDAR) to Advance Autism Knowledge.","authors":"Michelle L Stransky, Laneva Cobb, Nina Menon, Emily Barnard, Cynthia Belfleur, Lawrence Scahill, Jocelyn Kuhn","doi":"10.1007/s10803-024-06641-7","DOIUrl":"https://doi.org/10.1007/s10803-024-06641-7","url":null,"abstract":"The National Institute of Mental Health created the National Database for Autism Research (NDAR) to accelerate autism knowledge through data sharing and collaboration. However, our experience using NDAR reveals systematic challenges across several aspects of data submission, selection, management, and analysis that limit utility of this resource. We describe our NDAR experience in an ongoing project examining autism intervention outcomes among marginalized racial, ethnic, and gender groups. For this study, we planned to gather data from NDAR to conduct an individual participant data meta-analysis. Eighteen studies met inclusion criteria and reported data on participants at more than one point in time on the Vineland Adaptive Behavior Scales (Vineland) and the Autism Diagnostic Observation Schedule (ADOS). The difficulties with submitting, selecting, downloading, and managing data from NDAR posed limitations on data availability and analysis. Of the 3,850 unique participants in the selected studies, data at multiple time points were available for 312 participants on the Vineland and 278 on the ADOS. No participants had data on all assessment domains. To accelerate autism research via data sharing and collaboration with NDAR necessitates improving the processes for submitting, selecting, and managing data.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142648044","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Alexithymia, Inner Thinking Patterns, and Perceptions of Mental Health Therapy Strategies Among Autistic Adults. 自闭症成人的亚历山大症、内在思维模式以及对心理健康治疗策略的看法。

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-16 DOI: 10.1007/s10803-024-06643-5

Micah O Mazurek, Jessica Pappagianopoulos, Sophie Brunt, Michelle Menezes, Jessica V Smith, Mya Howard

{"title":"Alexithymia, Inner Thinking Patterns, and Perceptions of Mental Health Therapy Strategies Among Autistic Adults.","authors":"Micah O Mazurek, Jessica Pappagianopoulos, Sophie Brunt, Michelle Menezes, Jessica V Smith, Mya Howard","doi":"10.1007/s10803-024-06643-5","DOIUrl":"https://doi.org/10.1007/s10803-024-06643-5","url":null,"abstract":"Purpose: Autistic adults are at high risk for mental health challenges, yet there has been limited research on mental health interventions for this population. Individual differences in how thoughts and emotions are perceived may directly relate to the success of specific therapy strategies. This study examined whether alexithymia and inner thinking patterns relate to helpfulness and ease of use of mental health therapy strategies among autistic adults.Method: Participants (n = 269 autistic adults, ages 21-77) completed questionnaires assessing alexithymia, inner thinking patterns (i.e., self-talk, verbal thinking, visual thinking), and experiences with mental health therapy strategies. Ordinal logistic regressions were used to examine associations between alexithymia, inner thinking, and perceived helpfulness and ease of use of therapy strategies.Results: Autistic adults with greater alexithymia found cognitive strategies more difficult to use, while those with greater frequency of self-talk found them easier to use. By contrast, autistic adults with greater visual thinking found guided imagery strategies easier to use. There were no associations between alexithymia or inner thinking and perceived helpfulness or ease of use of behavioral strategies (exposure, behavioral activation), mind-body relaxation strategies (deep breathing, progressive muscle relaxation), or mindfulness meditation.Conclusions: The findings suggest that some mental health strategies may be more difficult to implement for some autistic adults, depending on individual thinking profiles. However, alexithymia and inner thinking patterns were unrelated to the perceived helpfulness of mental health strategies. Overall, this highlights the importance of providing individualized supports and accommodations to optimize mental health therapy for autistic adults.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644203","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

College Students Recognize Characteristics of Autism, but Struggle to Differentiate Between Characteristics of Autism and Other Disabilities. 大学生认识到自闭症的特征，但难以区分自闭症和其他残疾的特征。

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-15 DOI: 10.1007/s10803-024-06631-9

Camilla M McMahon

{"title":"College Students Recognize Characteristics of Autism, but Struggle to Differentiate Between Characteristics of Autism and Other Disabilities.","authors":"Camilla M McMahon","doi":"10.1007/s10803-024-06631-9","DOIUrl":"https://doi.org/10.1007/s10803-024-06631-9","url":null,"abstract":"The current study evaluates whether college students can identify characteristics of autism as diagnostic for autism, and characteristics of other disabilities as not diagnostic for autism. This study also examines metacognitive awareness of autism knowledge, evaluating whether college students can accurately calibrate their confidence in their beliefs about autistic characteristics. 283 college students completed the Autism Symptomatology Knowledge Assessment (McMahon et al. Research in Autism Spectrum Disorders 71:101499, 2020). In this assessment, participants were presented with characteristics of autism and other disabilities and asked to identify which characteristics could be used to diagnose someone with autism. For each characteristic, participants indicated how certain they were in their response. Participants more accurately categorized characteristics of autism, particularly social interaction and communication challenges, as being consistent with an autism diagnosis. Participants had more difficulty identifying that characteristics of other disabilities, especially anxiety, ADHD, and learning disabilities, were not diagnostic for autism. For autistic characteristics, participants' confidence and accuracy were positively correlated, such that participants who responded accurately were more confident in their response than those who responded inaccurately. For other disability characteristics, confidence and accuracy were typically not correlated or inversely correlated, indicating poor metacognitive awareness. College students confuse autism with other disabilities, which may have important implications in real-world contexts. Furthermore, individuals with poor metacognitive awareness of their autism knowledge may not realize that they are confusing autism with other disabilities, such that they may not seek out additional corrective information about autism.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142639129","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Healthcare Providers' Perspectives on Autistic Adolescents Transitioning to Independent Driving. 医疗服务提供者对自闭症青少年过渡到独立驾驶的看法。

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-15 DOI: 10.1007/s10803-024-06626-6

Catherine C McDonald, Christina Labows, Rachel K Myers, Emma Sartin, Benjamin E Yerys, Meghan E Carey, Cynthia J Mollen, Allison E Curry

{"title":"Healthcare Providers' Perspectives on Autistic Adolescents Transitioning to Independent Driving.","authors":"Catherine C McDonald, Christina Labows, Rachel K Myers, Emma Sartin, Benjamin E Yerys, Meghan E Carey, Cynthia J Mollen, Allison E Curry","doi":"10.1007/s10803-024-06626-6","DOIUrl":"https://doi.org/10.1007/s10803-024-06626-6","url":null,"abstract":"Licensure is an option for some autistic adolescents and families that increases mobility by enabling independent travel to employment, school, and social activities. The objective of this study was to identify current strategies used by healthcare providers (HCPs) in their guidance to autistic adolescents and families on the transition to independent driving. Semi-structured interviews were conducted with 15 HCPs. The team's previous research, literature review and expert feedback informed the development of the interview guide. A content analysis approach was used in the coding of transcripts, nine of which were double coded. Study team members reviewed coded transcripts, provided and discussed narrative summaries, and identified themes. Interviews were conducted with physicians, social workers, psychologists, therapist and a nurse practitioner. HCP identified their perceptions of autistic adolescents' strengths and weaknesses to be addressed in their individualized approaches. They described using clinical interactions as time to address licensure and driving, but also referred to specialists as needed. HCPs described using existing resources, but also provided a wish list of future resources. HCPs use an individualized approach for guidance in the transition to independent driving, considering the unique needs of autistic adolescent patients and families. These HCPs identified a clear need for tailored resources and guidance they can use in support of independent driving when appropriate for their patients and families.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142639140","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Using an Instructional Package to Support Adults with Autism in Communicating with a Medical Provider. 使用教学包帮助自闭症成人与医疗人员沟通。

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-15 DOI: 10.1007/s10803-024-06635-5

Jacqueline Wood, Charles Dukes, Kelly B Kearney

{"title":"Using an Instructional Package to Support Adults with Autism in Communicating with a Medical Provider.","authors":"Jacqueline Wood, Charles Dukes, Kelly B Kearney","doi":"10.1007/s10803-024-06635-5","DOIUrl":"https://doi.org/10.1007/s10803-024-06635-5","url":null,"abstract":"Adults with autism spectrum disorder (ASD) often experience co-occurring physical and mental health challenges throughout their lives. At the same time, they frequently face many barriers to accessing proper care. Strategies to improve communication and understanding can help to mitigate some of these barriers. This study examined the effects of an instructional package, including a video module accompanied by guided notes, the Autism Healthcare Accommodations Tool (AHAT), and behavior skills training (BST) to teach adults with autism to communicate their unique needs and request accommodations to a medical provider. Three participants independently completed a self-guided video module that modeled how to complete the guided notes and AHAT to identify appropriate accommodations and prepare for a doctor's appointment. Once finished, participants were taught to verbalize their needs and accommodations through BST. Results showed that participants' communication skills increased after introducing the instructional package, generalized to a novel provider and maintained once the instructional package was removed. This intervention proved to be an effective and socially valid method to improve communication for adults with autism in medical settings. Implications and suggestions for future research are discussed.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142639144","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Evaluation of the Social Attention Hypothesis: Do Children with Autism Prefer to See Objects Rather than People? 社会注意力假说的评估：自闭症儿童是否更喜欢看物体而不是人？

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-15 DOI: 10.1007/s10803-024-06596-9

Isik Akin-Bulbul, Selda Ozdemir

{"title":"Evaluation of the Social Attention Hypothesis: Do Children with Autism Prefer to See Objects Rather than People?","authors":"Isik Akin-Bulbul, Selda Ozdemir","doi":"10.1007/s10803-024-06596-9","DOIUrl":"10.1007/s10803-024-06596-9","url":null,"abstract":"A growing body of research shows that children with autism exhibit selective limitations in their ability to direct their visual attention to social stimuli. The cause of this selective limitation, however, remains unknown. The main purpose of this study is to determine whether the limitations in social attention are influenced by the objects in the environment. Specifically, the study examines the differences in visual attention between children with autism and typically developing (TD) children as they view videos of social interactions under two conditions, with and without objects. The sample consisted of 53 children with autism and 74 TD children, aged between 18 and 36 months. The findings indicated that young children with autism exhibited differences in their social attention compared to their TD peers. The results revealed that the presence of objects did not affect the visual attention differences between the two groups. However, removing objects from the environment positively impacted the social attention of both groups. In the condition without objects, both groups directed more visual attention more toward the Face and Body Areas of Interests (AoIs), whereas in the condition with objects, both groups prioritized looking at the Toy AoI. These findings have important implications for evidence-based decision-making, especially in designing early intervention environments for children with autism.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142639134","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Parental Representations and Emotional Availability: The Case of Children with Autism and Severe Behavior Problems. 父母的表述与情感可得性：自闭症和严重行为问题儿童的案例。

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-13 DOI: 10.1007/s10803-024-06629-3

Efrat Sher-Censor, Moria Harel, David Oppenheim, Adi Aran

{"title":"Parental Representations and Emotional Availability: The Case of Children with Autism and Severe Behavior Problems.","authors":"Efrat Sher-Censor, Moria Harel, David Oppenheim, Adi Aran","doi":"10.1007/s10803-024-06629-3","DOIUrl":"https://doi.org/10.1007/s10803-024-06629-3","url":null,"abstract":"Studies suggest that parents' emotional availability (EA) is associated with children's wellbeing, including in the case of children with autism. Our study extended prior research by examining the role of parents' representations in fostering parental EA and by focusing on fathers and on children with autism and severe behavior problems. We expected that parents' positive representations would be associated with higher EA and compared mothers' and fathers' representations and EA. Participants were 79 mothers and 69 fathers (child age range = 61-173 months, 21.95% girls). Representation assessments included the Reaction to Diagnosis Questionnaire, tapping resolution with respect to the child's diagnosis, and the coherence and positive comments in parents' Five Minute Speech Samples about the child. Parents' EA was coded from parent-child play interactions. Controlling for children's autism symptoms and adaptive functioning, mothers' resolution with respect to the child's diagnosis and positive comments (but not coherence) were associated with their EA, and fathers' coherence (but not positive comments and resolution) was associated with their EA. Mothers expressed more positive comments than fathers, and the resolution and EA scores of mothers and fathers were significantly correlated. Our results highlight the importance of considering both parents' representations and EA when studying and working with families of children with autism and severe behavior problems.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142620934","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Characterization and Outcomes of Profoundly and Non-profoundly Autistic Individuals Admitted to a Specialized Psychiatric Inpatient Unit. 入住精神病专科住院病房的深度自闭症和非深度自闭症患者的特征和疗效。

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-12 DOI: 10.1007/s10803-024-06640-8

Patrick W Romani, Mathew C Luehring, Angelique M Koerner, Shanna M Baikie

{"title":"Characterization and Outcomes of Profoundly and Non-profoundly Autistic Individuals Admitted to a Specialized Psychiatric Inpatient Unit.","authors":"Patrick W Romani, Mathew C Luehring, Angelique M Koerner, Shanna M Baikie","doi":"10.1007/s10803-024-06640-8","DOIUrl":"https://doi.org/10.1007/s10803-024-06640-8","url":null,"abstract":"Purpose: The prevalence of autism spectrum disorder (ASD) is currently estimated to be 1 in 36 children. While much is known about the impact of ASD on family and community functioning as well as treatment outcomes, less is known about a relatively new categorization of ASD, called \"profound autism.\"Methods: The current study evaluated 14 consecutively admitted patients meeting criteria for profound autism to a specialized psychiatric inpatient and partial hospitalization program. We then selected 15 non-profoundly autistic youth admitted immediately before or after each profoundly autistic youth to serve as a comparison. Patient caregivers completed measures about parental stress and the severity and frequency of patient problem behavior, and patients participated in functional analyses of problem behavior and function-based treatment programs during their admission.Results: Results showed profoundly autistic youth spent an average of 14 more days admitted to the psychiatric unit, and they engaged in higher parent-reported severity and frequency of self-injurious and stereotypic behavior. Functional analysis results for profoundly autistic youth showed a higher occurrence of automatically reinforced problem behavior but otherwise similar results. As well, profoundly autistic youth showed a lower percentage reduction in problem behavior at the end of the psychiatric hospitalization than their non-profoundly autistic peers.Conclusion: Profoundly autistic youth seem to require a high level of behavioral support, even after psychiatric hospitalization. Insurance companies and therapists need to recognize these challenges and invest sufficient resources to meet their treatment needs.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142620921","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Developmental and Psychiatric Conditions Among 5-7 Year Old Children with Non-persistent and Persistent Autism. 5-7 岁非持续性和持续性自闭症儿童的发育和精神状况。

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-09 DOI: 10.1007/s10803-024-06628-4

Elizabeth Harstad, Maya Golden, Georgios Sideridis, Stephanie J Brewster, William Barbaresi

{"title":"Developmental and Psychiatric Conditions Among 5-7 Year Old Children with Non-persistent and Persistent Autism.","authors":"Elizabeth Harstad, Maya Golden, Georgios Sideridis, Stephanie J Brewster, William Barbaresi","doi":"10.1007/s10803-024-06628-4","DOIUrl":"https://doi.org/10.1007/s10803-024-06628-4","url":null,"abstract":"To describe the types and frequency of developmental and psychiatric conditions (DPCs) in early school-age children who were diagnosed with ASD as toddlers and to compare rates of DPCs in children whose ASD persists (\"persistent ASD\") versus those in whom it does not (\"non-persistent ASD\"). Children with a clinical ASD diagnosis at 12-36 months old underwent a research assessment at 5-7 years old. Research assessments included measures of ASD symptoms and cognitive and adaptive functioning. A research psychologist assigned an ASD diagnosis (yes or no) based on the child's current functioning. Information about DPCs was obtained from parent and/or research psychologist report. Intellectual disability was defined as cognitive standard score < 70. Of the 213 children diagnosed with ASD at initial clinical assessment, at the research assessment 134 (62.6%) had persistent ASD and 79 (37%) had non-persistent ASD. Overall, the most common DPCs were ADHD (n = 58; 27.2%); speech disorder (n = 46; 21.6%); and intellectual disability (n = 46; 21.6%). Of children with non-persistent ASD, 29.1% had ≥ 1 DPC, and 19% had ADHD. Children with persistent ASD were over 5 times more likely (OR = 5.72) to have an additional DPC, compared to those with non-persistent ASD. Children with non-persistent ASD may manifest several different DPCs, with an increased rate of ADHD compared to population norms. Children with persistent ASD have higher rates of DPCs than those with non-persistent ASD. Follow-up care for children diagnosed with ASD at a young age should include assessment for other DPCs.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142620925","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Brief Report: Positive Caregiver Perceptions on Receiving Research Summary Reports in Autism Longitudinal Research. 简要报告：自闭症纵向研究中照顾者对接收研究总结报告的积极看法。

IF 3.2 2区心理学

Journal of Autism and Developmental Disorders Pub Date : 2024-11-09 DOI: 10.1007/s10803-024-06612-y

Elysa Eliopulos, Laura de la Roche, Yun-Ju Chen, Patrick McPhee, Anna Kata, Eric Duku, Caroline Roncadin, Lorraine Hoult, Deepa Singal, Stelios Georgiades

{"title":"Brief Report: Positive Caregiver Perceptions on Receiving Research Summary Reports in Autism Longitudinal Research.","authors":"Elysa Eliopulos, Laura de la Roche, Yun-Ju Chen, Patrick McPhee, Anna Kata, Eric Duku, Caroline Roncadin, Lorraine Hoult, Deepa Singal, Stelios Georgiades","doi":"10.1007/s10803-024-06612-y","DOIUrl":"https://doi.org/10.1007/s10803-024-06612-y","url":null,"abstract":"Purpose: Although participating in research is often presented as something that can 'help others in the future', research participants may also benefit from accessing and understanding their own research data. However, participant attitudes toward receiving individual data via research reports are under researched. This study examined participant perceptions of research reports within the context of the pilot phase of the Pediatric Autism Research Cohort (PARC) Study. PARC Study participants included caregivers of children with a recent diagnosis of autism, completing questionnaires on their child's symptoms and behaviours at six-month intervals for two years. Following completion of each timepoint, participants received a research summary report with information on their own child's developmental progress. Participants were invited to give feedback on their use of the reports after the pilot study.Methods: An online questionnaire developed by the PARC Study research team to assess the use of PARC Study research summary reports was emailed to participants who received a report. Responses to the questionnaire (n = 39) were evaluated using descriptive analyses.Results: Most participants reported that the reports improved their knowledge of autism and management/awareness of their child's needs. Reports were shared with professionals, leading to opportunities for dialogue and shared decision-making around intervention, social, and educational goals. Overall, participants expressed a preference for receiving such reports.Conclusions: This work demonstrates positive perceptions and experiences with using research summary reports among participants in autism research. The provision of feedback/summary reports can enrich participant knowledge and serve as a resource to open dialogue with professionals.","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2024-11-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142620918","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0