Give your valuable experiences of caring and supporting a young person with Duchenne

The Ulster University have approached Action Duchenne and our wonderful community to take part in an important research study which could benefit the shaping of future services for families.

The research aims to look at resilience in those who care for someone with Duchenne muscular dystrophy. Resilience focuses on how a carer, usually a parent or close family member, comes to cope, adapt and adjust to the everyday demands of caring. The research will also look at ‘Emotional Intelligence’ and social support. Emotional Intelligence describes the skills that we use to understand and manage our own emotions and the emotions of those around us.

Take part in 20 minute survey

The information gathered in this research will aim to develop a greater understanding of the caring and support experiences for family carers of someone with Duchenne. This could benefit the shaping of future services for families. All information gathered in this research will remain confidential except where a cause for harm is raised. No identifying information will be printed in the thesis or any subsequent research articles. 

The questionnaire should take carers around 20 minutes to complete. At the end of the questionnaire, you will be given the opportunity to register your interest in taking part in an interview discussing your experience of Duchenne. This research is part of a doctoral study being carried out in Ulster University, Northern Ireland and has been approved by Ulster University’s Ethics Committee and Northern Ireland Hospice.

Please take part taking part in the research at your earliest convenience before the closing date Wednesday 2nd May 2018.

Thank you