Questionnaire for parents of special needs children
Researchers from 14 countries have joined forces to investigate how the coronavirus pandemic is impacting on individuals with special needs.
They have created an online questionnaire aimed at the parents and carers of children with a range of conditions such as autism, Willliams syndrome, Down syndrome and other rare genetic diseases.
Dr Jo Van Herwegen, Director of the Child Development and Learning Difficulties Unit (CDLD) at the University of Central London, says that the research will contribute to a better understanding of the experiences of families with special needs children. As she explained: “These are challenging times for us all. However, it is unclear how challenging this situation is for people with special needs and their families.
“This is the reason why CDLD has agreed to be part of an international collaboration of researchers, so that we can find out how the pandemic and its political, social and economic repercussions are impacting on individuals with special needs and their families.”
The study will examine how people with special needs and their families, across the world, have been coping with the pandemic and the challenges that they have faced.
Researchers are particularly interested in the stresses that they have experienced and the coping and emotional regulation strategies they have employed.
The goal is to find out what people with different special needs have found particularly difficult and how different individuals, families, groups and governments have gone about dealing with and alleviating those difficulties.
Researchers say comparing the different groups will allow further insight into whether support plans during the crisis need to be unique for each developmental disorder or whether they can be generalised.
The research will build a better understanding of the effects of state-wide emergency measures and how they impact on children with neurodevelopmental disorders.
“We need over 200 responses in order to allow data to be compared between groups of special needs individuals in other countries,” continued Dr Van Herwegen. “The questionnaire can be filled out conveniently from home in about 30 minutes.
“The aim of the research is to get a better understanding of those with special needs so as to influence the design of future interventions, and improve their quality of life.”
Trudi Beswick, CEO of Caudwell Children, the national charity that provides practical and emotional support to disabled children and their families, believes it is a challenging time for disabled children and she’s supporting the CDLD’s research. As she explained: “Families with special needs children are feeling vulnerable and isolated and the increased burden placed on the NHS and social services means that support for these children will be adversely impacted for the foreseeable future.”
Mrs Beswick says that Caudwell Children is working relentlessly to continue providing a lifeline to thousands of disabled and special needs children and their families at this challenging time. She said: “During this public health crisis, when the needs of disabled and special needs children are increasing, not lessening, the charity is determined to give them even more support by raising as much funds as it can.”
However, the charity is facing a dramatic loss of income from their largely events and challenges based fundraising activity, following the government guidance restricting social gatherings, but Mrs Beswick say that the charity must continue delivering its services at a time when many disabled children are being adversely impacted.
In order to achieve this the charity has launched an ‘Emergency Appeal’ to ensure that disabled children can access the services that they need following the coronavirus crisis.
“I can guarantee that 100% of the funds raised will go to supporting disabled children,” continued Mrs Beswick. “Not one penny will go towards the administrative costs of the charity as they are covered by the charity’s largest benefactor.
“By donating to our emergency fundraising appeal you can help us to support those with a neurological condition and the seven percent of children in the UK who are disabled, that’s a further 800,000 children.”
You can complete the CDLD questionnaire here.
You can support Caudwell Children’s Emergency Appeal here.