Involving Your Child in Their Healthcare
Living with a chronic illness is challenging but there are ways you can prepare your child to live positively with a bleeding disorder and the additional challenges that a diagnosis of inhibitors can mean. Children and teenagers may often be interested in being included in discussions about their heath, hospital visits and treatment. It is important to talk to them openly and honestly about their condition in an age appropriate way. This way they will be better equipped and educated on their condition as adults, but also they will feel they have an active role in their health care and not that they have no control over what happens to them.
This can seem like a huge challenge for parents, where to start, what to say, what will they understand but it is a process that will develop along with your child.
You can start by
- Talking to your child as early as possible about their condition, in words that they understand. Depending on the age of your child you may talk about their condition through the use of play, story books and drawing. For older children it may be easier for them to ask questions and often they may ask complex questions – if you don’t know the answer, that is ok – explain to your child that you will find out together!
- Ask your child what they already know or what they would like to know.
- Ask your child about how much they want to be involved in their health care – do they want to ask questions when they are in the hospital, do they want to ask you some questions. Some children will want to be involved and ask lots of questions, but some might not want this and it is important to respect that not overload them with information they may not be ready for.
- Be open and honest with your child in an age appropriate way. This will help your child to build trust in relation to their health care treatment and avoid any “surprises” later on.
- Obviously there are decisions that adults and the health care professionals will need to make but you can help your child understand by talking to them about their health care, again in an age appropriate way!
By nature children are inquisitive and may have lots of questions particularly about their health care and how they might be dealing with different issues than their friends and peers. Talking openly to your child about their health may help ease any fears and allow them share any concerns they may have with you. It can also help you to find out what they do and don’t understand about their condition so that you can work together!
Barlow, J. H., & Ellard, D. R. (2004). Psycho‐educational interventions for children with chronic disease, parents and siblings: An overview of the research evidence base. Child: care, health and development, 30(6), 637-645.
Hayes, V. E. (1997). Families and children’s chronic conditions: Knowledge development and methodological considerations. Research and Theory for Nursing Practice, 11(4), 259.
Taylor, S. E. (1999). Health psychology. McGraw-Hill.