An Exploration of Perceived Quality of Life in Families and Carers of Children with Batten Disease at Different Stages of the Condition

We would like to inform you about a research project that is being run at the Evelina London Children’s Hospital. At present, we don’t know very much about what aspects of quality of life are important to families with a child with CLN3 juvenile Batten disease across the course of the condition. We would like to invite you to take part in a group discussion to express your views and perceptions of what aspects of quality of life you feel are important for you, your child and your family.

As a parent, family member or a carer, you hold a unique perspective on what it is like to care for your child on a day to day basis and what you consider as important when thinking about your child’s quality of life. It is your views and experiences that will help us to develop an understanding of what is important when considering your child’s care and well-being. We hope that the information that we gain from the group discussion will help us to inform health care professionals working with you and your child as to what aspects of quality of life are important to you. We also hope to find out what questions would be most helpful for professionals to be asking or discussing when thinking about your child’s care and quality of life across the course of the condition.

The study will involve you taking part in a small group discussion at the Evelina London Children’s Hospital (reasonable travel expenses will be reimbursed). The group will include other parents or family members with a child with CLN3 juvenile Batten disease.

You will also be given two forms to fill in: one asking some basic information about your family and background and a second one asking some additional information about your child’s condition. With your permission, the group discussion will be recorded, and later transcribed into written form and anonymised to ensure confidentiality.

We are asking parents, close family members and carers of children with CLN3 juvenile Batten disease if they would like and be able to participate in this study.

 If you are interested in participating, or would like to receive more information, please contact Miss Sophie Good (lead researcher) via post, telephone or email:

 Address: Children’s Neurosciences, Block B, South Wing, St Thomas’ Hospital Westminster Bridge Road, London, SE1 7EH.

 Tel: 0207 188 4640

Email: sophie.good@gstt.nhs.uk

REQUESTING FUTHER INFORMATION DOES NOT MEAN YOU ARE OBLIGED TO PARTICIPATE.