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Evidence Basis of Geniuslane

FINDINGS FROM FOCUS GROUP TO UNDERSTAND Need AMONG STAKEHOLDERS

Patient and Public Involvement

Method:

A focus group with five parents of children with Neurodisability from Cornwall, in August 2021 was conducted. They were demonstrated the digital solution Early Years Solutions has developed.

Consent:

Consent and confidentiality form were received from all five parents, before the conduction of the focus group.

Findings:

Parents agreed that there is a lack of support and expressed their enthusiasm for a digital solution for this that was demonstrated to them.

Views from Parents' focus group in Cornwall, UK

  • "I think it's that feeling of helplessness and lack of services early on, it sends us down a downward spiral"
  • "For the last four years, I've fought for recognition, because she masks so well in school".
  • "That trauma and stress from the parents get passed on to the children, even if the parents really try. No one human can hold that amount of stress and trauma inside them and have it not overspill".
  • "Teachers and professionals it's an assumption that they know about conditions such as autism, however, the most likely they're not. it's often an optional module in training or limited training opportunities for practitioners to go on, but it's not essential".
  • "I think the app will be great I'm sure, and I think it will be paramount in the next decade or younger parents, especially as smartphones become the norm social media and talking about stuff".
  • "This app I think it's going to be really beneficial".
  • "Again, something as simple as having an app at the side of your bed at night when you are kind of just overthinking overanalyzing something that's been said in an appointment, or you know, being able to again, I think all that impact on children's mental health, as well as parents".

Method: Parents of 45 children with a confirmed diagnosis of ASD - 15 from Cornwall, United Kingdom [mean (range) age, 11.06 (7.02-17.05) years] and 30 from Lucknow, India [mean (range) age, 5.2 (2.11- 8.07) years] participated in the survey. A semi-structured survey was constructed. It included four variables: change in behaviour (CIB), change in the routine (CIR), regression in skills (RIS), and parental stress (PS).

Consent: Consent was obtained, and General Data Protection Regulation guidelines were followed during data collection and analysis.

Results:  The mean rank for CIR, PS, and CIS was higher in the UK as compared to India. Parental stress was found to be increased in all the parents, however; among parents in the U.K., it was found to be significantly higher. Findings also showed that parental stress impacted child's routine significantly and decreased their skills.
Findings:  This survey explored the support available and the effect of lockdown on children with autism spectrum disorder and their families in India and the United Kingdom. Our findings showed significant problems for children and families due to lockdown.
App-based information delivered to parents with support showed encouraging feedback.

Evidence for Early Intervention

What is Early Intervention?

Early Childhood Intervention has been defined as “the term used to describe the services and supports that are available to babies and young children with developmental delays and disabilities, who are at risk of poor outcome and their families”. (1,2

Purpose of Early Intervention?

The early intervention’s primary purpose has been to help acquire and generalise critical developmental skills to the possible extent and achieve independent functioning across environments. The time period from birth up to six years is considered the most crucial for brain development, and intervening during this will help children reach their learning and developmental goals. (3)

Benefits of Early Intervention:

Direct benefits of EI include improvement in outcomes like physical, cognitive, behavioural, and social and emotional development, parent efficiency, mental health, and understanding of their child. (4) Other reported benefits included increment in verbal and non-verbal abilities of children with ASD, along with improved parents and caregivers’ efficacy and understanding of their child’s needs. (5,6)

Result of Early Intervention in Geniuslane Lucknow, India

Digitally Delivered Early Intervention in India: what have we achieved?

Introduction

When early intervention is provided to children with neurodisability parents expect an improvement in their developmental/ early years foundation skills (EYFS), self-help skills, and behaviour.

Aim

In our early intervention program (EIP) we focus on empowering parents with simple tailored and relevant information delivered on their phone app- DHRUV. Our study investigates children's improvement in the above area by addressing parental knowledge, home environment, and parental stress.

Method:

Intervention based on assessment cycle (I-BAC) was developed to profile children based on their EYFS, behaviour, and self-help skills. This automatically generates relevant video information on the parent’s app and enrols the child in an EIP. 42 children and their parents were enrolled for digitally delivered early intervention. These children were grouped automatically based on their recommended videos and delivered early intervention, in a school-based environment.

Results:

Descriptive analysis showed that 57.58% of children with autism, 50% of children with Cerebral Palsy, 100% with dyslexia, 80% with global delay, and 100% with Intellectual disability showed improvement in EYFS, self-help skills, and behaviour. The duration of early intervention ranged from 9 weeks up to 129 weeks.

Findings:

Digitally delivered early intervention increased compliance (73.41% of patients coming for one year or more), and EYFS. This model provides a low-cost, high efficacy digital platform to address parental anxiety and improve children’s EYFS. Limitation: long-term efficacy of the program needs evaluating and further longitudinal comparison studies are in progress.

Limitation:

  • We are writing these findings in the form of a research paper, to be published in a peer-reviewed journal.
  • A real-world trial is needed to compare and present the effectiveness.

Paediatricians need to take the Lead says new review.

Time to Act, 

time to re-direct and collaborate.

mHealth Apps Delivering Early Intervention to Support Parents of Children With Autism Spectrum Disorder: A Scoping Review

Early intervention is the key to improved outcome in children with Autism and their families. There is a huge surge in mhealth based support and therapies. In a recent scoping review, researchers found that although their is surge of such apps, but they lack effectiveness and clinical efficacy .

The provision of support to parents using apps was equally beneficial as in-person support, reduced costs, and improved outcomes in children. 

The review revealed limited evidence-based mHealth apps available currently in a community setting. Also underscores an opportunity
for clinicians to re-direct parents towards evidence-based information and interventions.

Proposed Solution

An Evidence-Based digitalised and simplified solution, which runs on a smart algorithm, to empower parents, schools and adapt to the child's developmental level and need. 

  • Early Years Solutions has developed a web solution for preschools or schools. For Children with suspected Autism, the school SENCO will be trained to mark the child's Early year foundation skills (EYFS), child's behaviour and parental stress questions. It provides a profile of the child's foundation skills as well as behaviour to parents. An algorithm identifies priority areas and smart goals for the parents.
  • Early Years Solutions has also developed a parents app which they can use to watch home programs individualised to their child's profile.

A repeat assessment in two months can provide a new profile or, if no progress, can identify children and families who need more Help.
Our solution empowers parents and schools to work on a single platform to provide early intervention. Profile graphs and smart goals help in addressing parental anxiety by identifying areas of priority. 

Information to parents is delivered as a video on the parent's app to be viewed 'anytime' by them. Due to profiling, the information is developed to be 'relevant,' 'simple to use,' and 'effective in addressing parents' day-to-day problems'. It also provides games in line with children's EYFS scores to improve their interaction and child's EYFS skills. This can be used 'everywhere' by the parents and school.

Benefits to Patients and the Health Care

Improved patient outcome and experience: 
Early Help available to the families delivered by schools will address parents' frustration about long waiting and lack of relevant information to help their child. 
Improved Quality of Life: 
Addressing day-to-day problems with relevant information improves the quality of life for the child and family. 
Potential cost savings: 
Early intervention will address children's foundation skills and behavior.

ONGOING Research.

EADIE TRIAL
Early intervention delivered by digitally empowered schools- A real-world impact evaluation

Technology Overview

For schools/preschools that wish to deliver Early intervention in children with developmental delay, this software and app provide a platform to document a child’s developmental progress. This produces a profile report. This provides videos for a home intervention program to parents. The parents and school get a single platform to engage and understand a child’s problems, and both school and parents will get to plan activities to interact with, as well manage the child’s behaviour effectively.

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