scholarly journals A parent-led intervention to reduce anxiety in autistic children with a severe to profound intellectual disability: protocol for the LADDERS pilot feasibility trial

Author(s):  
Jane Waite ◽  
Joanne Tarver ◽  
Effie Pearson ◽  
Jessica Hughes ◽  
Georgina Edwards ◽  
...  

Abstract Background There is a need for evidence-based approaches to reduce anxiety experienced by autistic children with severe to profound intellectual disability (ID). Avoidance of anxiety triggers, as a response to pronounced anxiety, occurs irrespective of age, background and neurodiversity. When avoidance is unhelpful, evidence-based anxiety reduction approaches aim to reduce it gradually (graded exposure), subsequently reducing anxiety. Combining graded exposure with emotional regulation techniques may be effective and acceptable for autistic children with severe to profound ID, if sensitive to needs and characteristics of autistic children. We have developed a 16-week, parent-led intervention (LADDERS) to reduce anxiety in this population of autistic children. LADDERS consists of psychoeducation, graded exposure-based tasks, and skills building, delivered utilising a person-centred approach. This study aims to assess whether LADDERS 1) reduces anxiety and 2) whether autistic children and parents find it acceptable and feasible. Method A single-site, multiple baseline, single case experimental study will be conducted. Participants will be parents of autistic children aged between 4-15 years. A minimum of 8 participants will be recruited through a research participant database, the Autistica Discover Network and social media. Once eligibility is confirmed, participants will be assessed at baseline, during the intervention and at a 2-month follow-up (week 24). The primary outcome measure will be a daily diary that assesses child anxiety. Discussion The study will provide preliminary evidence of whether LADDERS reduces anxiety in autistic children with severe to profound ID. Qualitative data from parents and child engagement will provide data on acceptability and feasibility.

2021 ◽  
Author(s):  
Tessa Reardon ◽  
Susan Ball ◽  
Maria Breen ◽  
Paul Brown ◽  
Emily Day ◽  
...  

Abstract Background: Anxiety disorders are common among primary-school aged children, but few affected children receive evidence-based treatment. Identifying and supporting children who experience anxiety problems through schools would address substantial treatment access barriers that families and school staff often face. We have worked with families and school staff to co-design procedures that incorporate screening, feedback for parents, and the offer of a brief intervention in primary schools. This study sets out to assess the feasibility of a subsequent school-based cluster randomised controlled trial to evaluate these procedures. Our objectives are to ensure our procedures for identifying and supporting children with anxiety difficulties through primary schools are acceptable and there are no negative impacts, to estimate recruitment and retention rates, and to identify any changes needed to study procedures or measures. Methods: We will recruit six primary/junior schools in England (2 classes per school), and invite all children (aged 8-9) (n=360) and their parent/carer and class teacher in participating classes to take part. Children, parents and class teachers will complete questionnaires at baseline and 12-week follow-up. Children who ‘screen positive’ on a 2-item parent-report child anxiety screen at baseline will be the target population (expected n=43). Parents receive feedback on screening questionnaire responses, and where the child screens positive the family is offered support (OSI: Online Support and Intervention for child anxiety). OSI is a brief, parent-led online intervention, supported by short telephone sessions with a Children’s Wellbeing Practitioner. Participants’ experiences of study procedures will be assessed through qualitative interviews/discussion groups. Discussion: Evidence-based procedures for identifying and supporting children with anxiety difficulties through primary schools would improve children’s access to timely, effective intervention for anxiety difficulties.Trial registration: ISRCTN registry: ISRCTN30032471. Retrospectively registered on 18.5.2021. https://www.isrctn.com/ISRCTN30032471


2013 ◽  
Vol 18 (1) ◽  
pp. 14-26 ◽  
Author(s):  
Rik Lemoncello ◽  
Bryan Ness

In this paper, we review concepts of evidence-based practice (EBP), and provide a discussion of the current limitations of EBP in terms of a relative paucity of efficacy evidence and the limitations of applying findings from randomized controlled clinical trials to individual clinical decisions. We will offer a complementary model of practice-based evidence (PBE) to encourage clinical scientists to design, implement, and evaluate our own clinical practices with high-quality evidence. We will describe two models for conducting PBE: the multiple baseline single-case experimental design and a clinical case study enhanced with generalization and control data probes. Gathering, analyzing, and sharing high-quality data can offer additional support through PBE to support EBP in speech-language pathology. It is our hope that these EBP and PBE strategies will empower clinical scientists to persevere in the quest for best practices.


2019 ◽  
pp. 074193251985507 ◽  
Author(s):  
Mariola Moeyaert ◽  
David A. Klingbeil ◽  
Emily Rodabaugh ◽  
Merve Turan

Meta-analysis of single-case experimental designs may further knowledge about evidence-based practices for students needing remedial or special education. To contribute to evidence-based practice, a multivariate multilevel meta-analysis was used to synthesize the effectiveness of peer tutoring interventions on both academic and social-behavior outcomes. In total, 46 single-case studies met all inclusion criteria. Peer tutoring had a statistically significant effect on both academic and social-behavior outcomes, with a slightly larger effect on academic outcomes. Peer tutoring also had a significant effect on the trend in academic outcomes during the treatment phase (indicating that the intervention becomes more effective over time), but the effect on trends was slightly less than for social outcomes. Including moderators such as gender, age, disability type, and study quality reduced the amount of between-case and between-study heterogeneity. Limitations and implications of these findings are discussed.


Autism ◽  
2020 ◽  
pp. 136236132096236
Author(s):  
Joanne Tarver ◽  
Effie Pearson ◽  
Georgina Edwards ◽  
Aryana Shirazi ◽  
Liana Potter ◽  
...  

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.


BMJ Open ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. e041626
Author(s):  
Jamie M Jacobs ◽  
Chelsea S Rapoport ◽  
Arielle Horenstein ◽  
Madison Clay ◽  
Emily A Walsh ◽  
...  

IntroductionPatient adherence to adjuvant endocrine therapy (AET) after a diagnosis of hormone-sensitive breast cancer is poor. Previous interventions have failed to produce changes in adherence, address patient preferences or include theoretically informed and evidence-based components. Therefore, we iteratively developed a patient-centred, evidence-based, small-group, videoconference intervention to improve adherence and symptom management as well as reduce distress for patients taking AET after breast cancer (Symptom-Targeted Randomised Intervention for Distress and Adherence to Adjuvant Endocrine Therapy, STRIDE).Methods and analysisThe current study is a non-blinded, randomised, controlled, feasibility trial of STRIDE compared with a medication monitoring control group. The primary objective is to examine the feasibility and acceptability of STRIDE, while secondary objectives are to assess changes in objective and subjective adherence, symptom distress and satisfaction with AET. Patients will be recruited from the Massachusetts General Hospital Cancer Center in Boston, Massachusetts. The total number of patients accrued will be 75, with ≥60 patients completing the study. All patients will store their AET in an electronic pill bottle for objective adherence monitoring. Patients randomly assigned to the STRIDE intervention will receive 6 weekly 1-hour sessions, in small groups of two, delivered via videoconferencing by a trained mental health professional. Patients assigned to the control group will store their medication in the electronic pill bottle and receive follow-up oncology care as usual. All participants will complete self-report psychosocial measures at baseline, 12 weeks and 24 weeks postbaseline.Ethics and disseminationThe study is funded by the National Cancer Institute of the National Institutes of Health and is approved by the Dana-Farber/Harvard Cancer Center Institutional Review Board (Protocol #18–603, V.1.2, first approval date 1 February 2019). The study will be reported in accordance with the Consolidated Standards of Reporting Trials statement for non-pharmacological trials. Results will be published in peer-reviewed academic journals, presented at scientific meetings and disseminated to patient organisations and media outlets.Trial registration numberNCT03837496; Pre-results.


2018 ◽  
Vol 53 (1) ◽  
pp. 51-62 ◽  
Author(s):  
Sally B. Shepley ◽  
Amy D. Spriggs ◽  
Mark D. Samudre ◽  
Emily C. Sartini

This study evaluated the effects of progressive time delay (PTD) to teach four elementary students with intellectual disability on how to self-instruct using a video activity schedule. A single-case multiple probe across participants design with a multiple probe across environments design for each participant was used to assess the generalization of the self-instruction behavior to novel environments. All participants acquired the self-instruction behavior in their target environments. One participant generalized this behavior to a novel environment by the completion of the study, and the other three participants required introduction of the independent variable (PTD) to master acquisition in the two generalization environments. Implications for practitioners and suggestions for effective programming of generalization in future research are discussed.


2018 ◽  
Vol 3 ◽  
pp. 141
Author(s):  
Stephen B. Gordon ◽  
Lameck Chinula ◽  
Ben Chilima ◽  
Victor Mwapasa ◽  
Sufia Dadabhai ◽  
...  

Background: Research participant remuneration has been variable and inconsistent world-wide for many years owing to uncertainty regarding best practice and a lack of written guidelines for investigators and research ethics committees.  Recent recommendations are that researchers and regulators should develop regionally appropriate written guidelines to define reasonable remuneration based on expense reimbursement, compensation for time and burden associated with participation.   Incentives to motivate participation are acceptable in specific circumstances. Methods: We wished to develop regionally informed, precise and applicable guidelines in Malawi that might also be generally useful for African researchers and review committees.  We therefore reviewed the current literature and developed widely applicable and specific remuneration tables using acceptable and evidence-based payment rationales. Results: There were good international guidelines and limited published regional guidelines.  There were published examples of best practice and sufficient material to suggest a structured remuneration table.  The rationale and method for the table were discussed at an inter-disciplinary workshop resulting in a reimbursement and compensation model with fixed rates.  Payment is recommended pro rata and equally across a study. Conclusions: Transparent, fair remuneration of research participants is recommended by researchers and regulators in Malawi.  The means to achieve this are now presented in the Malawi research participant remuneration table.


2011 ◽  
Vol 26 (4) ◽  
pp. 206-217 ◽  
Author(s):  
Maureen E. Angell ◽  
Joanna K. Nicholson ◽  
Emily H. Watts ◽  
Craig Blum

An adapted Power Card strategy was examined to determine effectiveness in decreasing latency in responding to teacher cues to initiate interactivity transitions in the classroom among three students, aged 10 to 11 years, with developmental disabilities (i.e., one with autism and two with intellectual disability). The Power Card strategy, a form of visually cued instruction, included scripts in which the students’ “heroes” or preferred fictional characters demonstrated targeted interactivity transition behaviors. The strategy decreased response latency for all three students as documented within a single-case withdrawal (A-B-A-B-A-B) design replicated across the three participants. Instructional staff implemented the intervention and, at the end of the study, all remarked about the dramatic effectiveness of the adapted Power Card strategy, said they would use this strategy in the future, and noted that overall classroom functioning had improved. Implications for classroom practice and recommendations for further research on the use of Power Card strategies are discussed.


2018 ◽  
Vol 34 (1) ◽  
pp. 3-14 ◽  
Author(s):  
Victoria F. Knight ◽  
Heartley B. Huber ◽  
Emily M. Kuntz ◽  
Erik W. Carter ◽  
A. Pablo Juarez

Improving educational outcomes for students with autism and intellectual disability requires delivering services and supports marked by evidence-based practices. We surveyed 535 special educators of students with autism and/or intellectual disability about (a) their implementation of 26 instructional practices, (b) their recent access to training and resources on those practices, (c) the factors they consider when deciding which practices to use, (d) the importance they place on various instructional areas (e.g., social skills, reading), and (e) their preparedness to provide that instruction. Although teachers reported implementing a wide range of evidence-based instructional practices, their recent access to training and resources was fairly limited. Special educators identified a constellation of factors informing their instructional decision making, placing emphasis on student needs and professional judgment. When considering instructional areas, a gap was evident between ratings of importance and preparedness. We address implications for strengthening professional development pathways and offer recommendations for future research.


2016 ◽  
Author(s):  
◽  
Chi-Ching Chuang

[ACCESS RESTRICTED TO THE UNIVERSITY OF MISSOURI AT AUTHOR'S REQUEST.] The purpose this study was to examine the treatment effects of an evidence-based teacher training -- Incredible Years Teacher Classroom Management (IY TCM) -- for children with aggression. Specifically, treatment effects were expected to be demonstrated on both academic achievement and behavioral performance. Previous studies have accumulated evidence regarding the co-occurrence of children's aggressive behavior and academic failure (Darney et al., 2012; Reinke et al., 2008); the negative trajectories continue for them, indicating negative outcomes in adolescent and adulthood. When children enter school, they spend more time learning with peers and being supervised by school teachers. Classroom management has been demonstrated as a factor in either escalating children's aggressive behavior or decreasing those problematic behaviors (Reinke and Herman, 2002; Webster-Stratton et al., 2001). IY TCM trains teachers in evidence-based practices of effective practical behavioral management strategies, teacher-child relationship skills, parent-teacher collaboration, behavior plans addressing developmentally appropriate goals for individual students, and ways to promote students' emotional regulation, social skills and problem-solving skills. Previous studies about IY TCM were mostly conducted with other treatments of IY series. This study was one of the first studies to investigate treatment effectiveness of IY TCM. Participants included 1818 students (Grade K to 3) and 105 teachers from nine elementary schools in a large Midwestern school district. 52 teachers were randomly assigned to receive IY TCM, indicating 901 students in the intervention group. 74 % of the participated students are African American and 50 % of them received free reduced lunch (FRL). All outcome variables were assessed before and after intervention implementation. Results support the hypotheses associated with research questions one and two which indicated that higher levels of aggression as reported by teachers would be associated with lower academic achievement on both reading and math at the beginning of school year and the end of school year controlling demographic variables such as gender, FRL and race. A hierarchical linear regression analysis was conducted to examine the main effects and the hypotheses that baseline levels of aggression moderate the relationship between intervention status and outcomes. Results indicated a significant intervention status by baseline aggression interaction moderated children's math achievement. Additionally, significant moderation was found on children's emotional regulation and prosocial behaviors. Lastly, research question five and six focused on evaluating whether students with high level of aggressive behavior would demonstrate greater growth in academics and social emotional performance in comparison to less aggressive children in the treatment group. The hypothesis of greater improvement on academic achievement or social emotional performance for children with higher levels of aggression than their classroom peers post intervention was not supported. Further implication for practice and direction for future research based on the findings were discussed.


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