Many of us understand the anxiety that comes as a part of seeking healthcare for your child with special needs.  Either in a planned setting such as an out patients appointment or during an urgent care situation, having to facilitate your child to have blood taken or other procedure can be stressful. This is commonly called ‘procedural anxiety’ by researchers and professionals and encompasses the fear, worry or distress related to any medical or surgical procedure.  Procedural anxiety can even become a barrier to families accessing much needed healthcare.  This is one of the barriers we hope to break down by the creation of the Going To Hospital book.

“but more needs to be done….”

We are aware that more needs to be done to support families and children facing procedural anxiety however. We are pleased to let you know that Lauren Collard, MSc Nursing Student at King’s College London, is trying to understand such situations more deeply and improve nursing practice in the future for children and families in these situations.

David's BP tests

Lauren would like to learn more about your experiences to help them find out more about ways in which they can support parents of children with learning disabilities who go through procedural anxiety better. They ask that for you to take part you are over the age of 18, willing to talk about your experiences of caring for your child during an episode of procedural anxiety. The focus of this study is on parents experiences of supporting a child who become anxious of distressed during procedures.

Lauren told us: “We are focusing on interviewing parents because we believe in ‘family-centred care’, i.e. that parents are best placed to understand and communicate their child’s experience where they may not be able to express this themselves, and secondly, that we would like to know how best to support parents when they are in hospital with their child as evidence shows when parents are respected and supported the outcomes for their children are better (which sounds so obvious, but I’m sure plenty of parents can attest that this doesn’t always happen in practice). The goal is that this research can be shared with other nurses to really highlight parents roles in supporting children through traumatic experiences in children, and ways in which we can improve children’s services to utilise this.”

What will happen if I take part?

If you choose to take part in the project you will be asked to participate in a virtual interview which will be done over the telephone or via instant messenger, using an app of your choice (Whatsapp, Microsoft Teams, telephone). Participation will take place from your home, or any quiet, private location of your choosing and can be arranged for a time which is convenient for you. It will last approximately 45-60 minutes. As part of participation you will be asked to talk about your experience(s) of caring for your child with learning disabilities, during an episode(s) of procedural anxiety. You will be asked to describe what happened, and how this made you think and feel. An example of a question that you may be asked in the interview is “what has been your experience of caring for your child with a learning disability, whilst they are having procedural anxiety?” or “how did this experience make you feel”. You will also be asked some demographic questions, such as your age, gender, and the age and gender of your child. You are free not to answer any questions that you do not wish to, and you may take a break at any point.

If you would like to take part contact Lauren at lauren.a.collard@kcl.ac.uk