Category Archives: Research

Parent/Carer Rights: A Guide for Parents

 

There have been recent changes to the law relating to carers in England and Wales.

Carers’ rights in England are set out in the Children and Families Act 2014, which came into force on 1st April 2016.

For information on the law which applies in England, see:

In Wales, carers’ rights are governed by the Social Services and Well-being (Wales) Act 2014, which came into force on 6th April 2016.

For information on the law applicable in Wales, see:

Money Matters: A Guide for Parents

This guide has been prepared for parents of disabled children who want to know what financial help may be available for them and what arrangements they may need to put in place to manage their children’s finances from birth and as they get older.

This guide is one of a series of guides to be published by Cerebra that aim to give parents of children with disabilities and/or special needs information on how to get the help and support they need. You can download the guide below.

 
 
 
 
 
 

Download now

 
First published 2012. This edition 2017. Review date 2018.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

University of Birmingham

730x274_fitandcropThe Cerebra Centre for Neurodevelopmental Disorders is headed by Professor Chris Oliver and is based in the School of Psychology at the University of Birmingham. The research at the centre is funded by Cerebra with additional support from a number of agencies and charities.

The research undertaken focuses on the difficulties experienced by children and adults who have intellectual disability, autism spectrum disorders and genetic syndromes that are associated with developmental delay. A team of clinical and academic psychologists, undergraduate and postgraduate students and volunteers conduct high quality research into emotional, cognitive and behavioural difference and disorder in individuals with these neurodevelopmental disorders. More information about specific research projects taking place can be found on the centre’s project pages.

To read more about the research activities, journal publications and conference presentations undertaken by the team, take a look at the annual reports available here:

Download University of Birmingham Annual Report 2017 Download University of Birmingham (Sleep) Annual Report 2017

Information is also available on the University of Birmingham website.

FIND image

The FIND website is for parents/carers and professionals. It provides information about neurogenetic disorders including Cri Du Chat, Angelman and Cornelia De Lange. For professionals there is access to an interactive database. The website also gives information on current research projects that are being conducted in individuals with rare genetic syndromes and neurodevelopmental disorders. To access the website please click here.

Parents who have been involved in research at the Centre have shared their stories about raising a child with a rare genetic syndrome. To see their stories please click on this link.

In the video shown below, Dr Jane Waite, a Post Doctoral Research Fellow provides an insight into the research taking place at the centre.

 

 

Research Summary: Parent-to-parent support-does it help?

A research summary written by PenCRU and members of the PenCRU Family Faculty.

Peer support is emotional and practical support given by people who share similar experiences. It has been shown that peer support can help people with specific conditions or issues.

The idea to carry out research about peer support for parents of disabled children came from one of the parents in the PenCRU Family Faculty.

The review was led by the team at Peninsula Cerebra Research Unit (PenCRU) a childhood disability research unit at the University of Exeter Medical School.

The research was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West Peninsula – known as PenCLAHRC.

A copy of the research summary can be found here.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Research papers

Welcome to our section containing Cerebra’s research papers.

These Research papers are provided free of charge but if you would like to make a donation to help cover the costs of research and updating it would make a huge difference. To donate by text send CERE12 and the amount to 70070 or telephone our Fundraising Department on 01267 224221.


information-standard-member-logo-postive_graphic-onlyCerebra’s aim is to provide high quality health and social care information for the parents and carers of children aged 0-16 years with neurological conditions. Cerebra has been a certified member of the Information Standard since August 2013. The Information Standard is an independent scheme, supported by NHS England, to ensure only the highest quality health and social care information is produced. This means that our relevant products have been through the schemes rigorous quality control procedure. For more details on what it means to have achieved the Information Standard certification, visit:

http://www.england.nhs.uk/tis/

Cerebra’s objectives are to:

  • Use only current, relevant, balanced and trustworthy sources of information and ensure they are clearly referenced
  • Inform parents and carers about different conditions and the issues surrounding these so that they have a better understanding
  • Empower parents and carers to make their own decisions and resolve problems and issues

Cerebra is responsible for the accuracy of the information produced. The Information Standard shall not be responsible for any inaccuracies or omissions in the information published on Cerebra’s website. Weblogs, forums and personal experience pages/videos are excluded from the scope of certification.

Toilet training: a guide for parents

Children with developmental disabilities are not all the same and neither are their toileting difficulties. Toileting problems can have a number of different causes and as a result require a range of approaches to manage and resolve issues. Children with neurological conditions can sometimes find learning to use the toilet more difficult than typically developing children as the result of physical, behavioural or sensory differences, as well as the learning difficulties which are part of their developmental disability. It is important to note that the majority of individuals with intellectual difficulties will become self-toileting by adulthood. (Please note, this information deals with daytime wetting and not bedwetting or night-time enuresis). You can download the guide below.

 
 
 
 

Download now

 

Download Toilet Traininig Infographic (968.7 KB)

Toilet training

 

 

 

 

 

 

 

 

 

 

First published 2012. This edition 2015. Review date 2018.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Decision Making, Confidentiality and Sharing Information: A Guide for Parents

This guide has been prepared for parents of disabled children and young people to provide an overview of the law and policy relevant to decision-making in health and social care, including the duty of confidentiality and sharing information. This is an important area because parents are likely to find that their role in decision-making about their child’s care and support changes as they get older. Health and social care professionals will start to encourage disabled children and young people to take an active part in planning and reviewing their own care and support.

Parents who have been closely involved in their child’s health and social care, might find this change of approach difficult, especially if the reasons for their reduced involvement are not explained to them. Accordingly, this guide covers the main areas relating to decision-making through a series of questions and answers. You can download the guide and a useful flowchart (‘Who Makes Decisions About My Child’s Care?’),  below.

Download now

Download Flowchart: Who Makes Decisions About My Child's Care?

Published 2013. This edition 2016. Review date 2019.


Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Guides for Parents

Welcome to our section containing Cerebra’s guides for parents.

Please Note Several of our documents are currently unavailable please try again  later.

These Guides are provided free of charge but if you would like to make a donation to help cover the costs of research and updating, it would make a huge difference. You can donate online, or by text, sending CERE12 and then the amount to 70070 or telephone our Fundraising Department on 01267 224221.


information-standard-member-logo-postive_graphic-onlyCerebra’s aim is to provide high quality health and social care information for the parents and carers of children aged 0-16 years with neurological conditions. Cerebra has been a certified member of the Information Standard since August 2013. The Information Standard is an independent scheme, supported by NHS England, to ensure only the highest quality health and social care information is produced. This means that our relevant products have been through the schemes rigorous quality control procedure. For more details on what it means to have achieved the Information Standard certification, visit:

http://www.england.nhs.uk/tis/

Cerebra’s objectives are to:

  • Use only current, relevant, balanced and trustworthy sources of information and ensure they are clearly referenced.
  • Inform parents and carers about different conditions and the issues surrounding these so that they have a better understanding.
  • Empower parents and carers to make their own decisions and resolve problems and issues.

Cerebra is responsible for the accuracy of the information produced. The Information Standard shall not be responsible for any inaccuracies or omissions in the information published on Cerebra’s website. Weblogs, forums and personal experience pages/videos are excluded from the scope of certification.

The Cerebra Family Research Group

torheadlineThe Cerebra 1000 families study will look at the experiences of families as they bring up a child with a learning disability and/or autism.

There is probably only one question in the field of intellectual disability (ID) and autism family research that has been answered pretty much beyond doubt.  Parents, especially mothers, raising children with ID or autism report more stress and mental health difficulties than other parents.

We wanted to explore this further and in January 2014 Prof Richard Hastings, based at Warwick University, was awarded research funding from Cerebra to carry out the first large scale and long term study to identify and understand family stress, its causes, strategies for coping adopted by families and the outcomes for all family members.

The Cerebra 1,000 families study will follow 1,000 families over a five year period.  Children between the ages of 4 and 11 years with an intellectual disability or autism will be recruited into the study shortly.  Data will be collected from both parents (primary and secondary parental caregivers) where there is more than one parent in the household, and from one parent only in single parent households.

Data collected will allow the researchers to address questions about parental well-being and the two way relationship between a child’s behaviour and parental well-being; why some parents report significant psychological stress and others do not (psychological variables and socio-economic variables); and how parents and children are affected by the transition from primary to secondary school.  In addition the study will focus on fathers of children with intellectual disability or autism and their psychological well-being over time and the positive and negative outcomes for siblings.

Cerebra is also planning a conference with the University of Warwick focussing on Mental Health in Children with Learning Disability and/or Autism.

When? – 4th June 2015

Where? – The Welcome Centre, Coventry

Who is it for? The conference aims to bring together researchers, practitioners, educators and organisations working with children with Learning disabilities and/or autism in the West Midlands. Parents and carers are also welcome.

What is it about? The conference provides an opportunity for sharing research information relating to mental health in children with learning disabilities and/or autism, understanding national developments as well as discussing the implications of Education, Health and Care Plans (EHCs).

Keep a look out for more information about the conference and how to book in upcoming newsletters!