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Adapting receptive language assessment to meet the needs of adolescents with Rett Syndrome: a feasibility study

In this project we will conduct formal and informal language assessments adapted for teenagers with Rett syndrome (and other physical disabilities). This will include observations in the classroom, direct assessment using low and high tech eye gaze access methods, and indirect teacher/parent report measures.

Department: Clinical Language Sciences

Supervised by: Dr Gillian Townend

The Placement Project

Rett Syndrome is a rare neurodevelopmental disorder involving an early loss of mobility, speech, and purposeful hand use, accompanied by a wide array of comorbid symptoms. The extent to which language and cognition are impaired is unclear. Standardised assessments that require motoric or verbal skill responses must be modified to take into account their physical (and other) needs. This project is part of a longer-term study trialling the feasibility of an assessment prototype that we have developed to assess understanding of language in teenagers with Rett syndrome. It combines tasks from a number of well-known language assessments, modified for eye gaze access, with newly-created informal tasks, observations in the classroom and teacher/parent reports. Current UREC approval will be extended to include other physical conditions such as cerebral palsy to increase the cohort size and add a comparative group. Eye gaze modifications include the use of low tech (E-tran frames) and high tech devices (Tobii I-13). The study is over three years with successive small cohorts being assessed as student projects that can be analysed separately and in combination. This UROP project will contribute towards the full study, with the primary research question: Is it feasible to develop an assessment prototype for investigating receptive language skills, adapted to the needs of adolescents with Rett syndrome? The student(s) undertaking this UROP project will conduct the full battery of assessments with a new cohort. Their results will contribute towards publication in a scientific journal once a large enough combined sample size has accrued.

Tasks

Recruitment will take place prior to the student(s) commencing the placement. Cohort size and location have yet to be determined. Participants may be in one or multiple (special) schools, up to max. 2 hours travel from Reading (we will aim for as nearby as possible to reduce travel). Travel expenses can be reimbursed. Each participant will require multiple visits. Week One: Induction and orientation to Rett syndrome (including completion of Rett UK online course), the study, the participants and schools. Week Two to Week Four: Fieldwork/data collection. This will include: 1. Undertaking a number of observational visits for each participant, whereby the student(s) will take notes and record the participants communication behaviours in a familiar classroom setting with familiar people; 2. Conducting individual assessment sessions in a quiet room within the school, using a battery of tasks and resources that will be provided to them. These sessions will be supported by the project supervisor (Gill Townend). 3. Conducting the teacher/parent report interviews in person or online (using the Communication Matrix as a basis). 4. Collecting the school-based reports specified in the project documentation. Week Five – Week Six: Data analysis and write-up. 1. Transcribing video recordings of the assessment sessions (if not already done). 2. Scoring assessment responses (where appropriate). 3. Extracting relevant information from school-based, teacher and parent reports. 4. Collating all of the assessment data and performing any quantitative (statistical) and quantitative analyses required, including within and across subjects’ analyses. 5. Writing preliminary report on findings.

Skills, knowledge and experience required

1. To have some experience of conducting language assessments (with any population). 2. To be interested in and open to working with teenagers with physical and learning disabilities. 3. To have some awareness of and interest in Augmentative and Alternative Communication (AAC). 4. To be aware of Rett syndrome and its complexity, and the challenges this brings for the individual and for people working with them (I do not expect this to be a deep knowledge but at least some prior awareness of Rett syndrome. Recommendations for guided reading and online presentations can be given prior to the placement, and the first week will include completion of an online course introducing Rett syndrome and relevant communication strategies to use.)

Skills which will be developed during the placement

1. Increased knowledge and understanding of Rett syndrome, and the needs of people with this and similar conditions, including completion of a Rett UK online course (with certificate). 2. Skills in adapting assessments to suit the needs of people with physical disabilities. 3. Skills in communicating and building a rapport with people with no/limited verbal output, AAC needs and multiple comorbid symptoms that impact communication. 4. Skills in conducting parent/teacher interviews. 5. Skills in conducting qualitative and quantitative analyses.

Place of Work

PCLS with fieldwork/data collection in (special) schools that may be up to 2 hours travel from the University.

Hours of Work

Flexible, can be part-time

Approximate Start and End Dates (not fixed)

Monday 10 June 2024 - Saturday 31 August 2024

How to Apply

The deadline to apply for this project is 5pm on Friday 5th April 2024. To make an application, please go to the following link and complete the application form: https://forms.office.com/e/pMgea0dAHv. To find this project in the application form, please filter ‘school of project applying to’ and select School of Psychology & Clinical Language Sciences


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