27 Mar 2018

Needs of children of seriously ill parents are being neglected, says OU research

Children whose parents or carers are seriously ill are an ‘invisible group’ and are suffering themselves with mental health problems and a lack of support.

This comes from new research by The Open University with Hope Support Services, a charity which helps young people who are going through a family health crisis. For the first time, this research has identified the scale of the problem and the needs, often unmet, of these children and young people. It recommends that government regularly collects national data, that it reviews and revises national and local policies, and develops more flexible face to face support across education, health and social care professions.

Professor of Education at the OU, Jane Payler, is co-author of the research report and co-Director of the Children’s Research Centre. She said:
“Around a million children in the UK have a parent or carer who has a long term serious illness such as cancer. Many of these children are experiencing distress, anxiety, become depressed and isolated, they fall behind at school and are often labelled ‘difficult’.”

The research investigated the need for support services nationally, examining the support young people needed, the ways in which Hope addressed those requirements and the benefits the children got from this service.

Dr Victoria Cooper, co-author of the research report and Co-Director of the Children’s Research Centre at the OU said:
“Despite it being widely recognised that intervention and targeted support is the best way to help young people in this situation, there is limited provision across the UK which is inconsistent and lacking direction from government policy.”

Hope has supported nearly 400 young people over the past seven years, such as Lucy:
Lucy is 16 years old and her mother was diagnosed with breast cancer a year ago. Although Lucy has older siblings she is the only child living at home and has taken on some caring responsibilities. Lucy was diagnosed with depression due to the stress and upset of this health crisis. Her school work has suffered, which she has found very upsetting. Lucy uses the counselling support and workshop group through Hope, and has found the online support particularly beneficial too.

Hope was established by Sue Trevethan in 2009. She was diagnosed with cancer three years earlier but found no support available for her three children as she battled the disease.

Clare Thomas, CEO of Hope, says:
“Hope has been delivering a range of services to this group of young people for 8 years. We therefore have evidence of their needs and the ways in which our work can make a long term difference to their lives. However, this report will be vital to Hope’s future - to be able to be able to assess the level of need nationally and plan a response, while persuading policy makers to take notice of this hidden group of children”.

The research report recommendations are:
o Collect national data regularly
o Review and revise national and local policies – recognising that C&YP need additional educational support; support services need to combine flexible face to face support as well as access via different media; education, health and social care professionals need additional training to help understand the needs and experiences of children in this situation; a vital aspect of support is a small network of trusted youth workers and peers experiencing similar situations
o Review accessibility of these services to those from minority backgrounds
o Involve young people in the design and delivery of support

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