Do you have a child with cardiomyopathy who has had a flu-like illness?

23rd October 2015

Parents and carers of children with cardiomyopathy are being asked to help researchers examining experiences of living with the disease.

They want to hear from parents of children who are aged between six months and 12 years and have had a flu-like illness.

The information will be used to help increase support for parents and families in a similar situation, and improve the understanding of health workers.

The study is being carried out by the Health Experiences Research Group at Oxford University.

Researcher Dr Maria Salinas said: “We are seeking parents with children with a long term health condition, such as cardiomyopathy, who have been ill with flu or flu-like symptoms.

“We would like to ask questions about the experiences of the child, including what happened and what the parents’ or carers’ thoughts and feelings were, how they got information, how they made decisions and what had been the good and bad parts of the episode.

“We want to understand the experiences of parents and carers, the impact on the family, and their support needs to help others going through the same.

“We are conducting informal, face-to-face interviews with parents and carers in their homes or elsewhere if they prefer. “

The research group produces a website about people’s real life experiences of living with illness and disability.   The site, http://www.healthtalk.org/, covers over 90 different topics and offers people the opportunity to hear from others in a similar situation.

Dr Salinas added: “The aim of our research is to improve understanding of people’s experiences of health, illness and healthcare, and provide resources to support people living with a wide range of health conditions, their families, their friends and health professionals involved in their care. We have full ethical approval and our researchers are CRB checked.”

If you are a parent or carer of a child with cardiomyopathy who has had a flu-like illness and would like to take part in the research, email Sarah Dennis for more details.