Hospitals and medical settings are wonderful places for both adults and children to receive care. However, they can also be incredibly intimidating at times, and you can find yourself having to learn a whole new language when it comes to medical terms and explanations. When our children are involved, this can add another level of distress. Often in these scenarios, our children are either unable to (due to their developmental stage) or unwilling to (due to fear) find their voice.
Medical settings are, by nature, fast paced and clinical. It becomes very easy to get swept up in what has to be done and forget the different ways of how it can be done. Having positive medical experiences are so important for ongoing medical care throughout life; and sometimes we need to help shift the focus to promoting best care options.
As parents, it can be challenging, at times to navigate this system; however, it is important to remember that sometimes you need to be your child’s voice. You know your child better than anyone and can be the one to advocate for them when they are unable to do so.
Remember advocacy is a learning process and it’s okay to start with less confidence. Over time, with knowledge, experience and support, you will become more comfortable and empowered in advocating for your child’s needs.
So, what are some of the ways that you can help promote better communication with your medical team and provide a voice for your child?
PREPARE - before you meet with your team, make a list of questions or concerns - no questions are silly, and it is best to ask about anything that you are unclear or unsure of.
ASSERT - it’s ok to speak up for your child. You know them best and you are their voice. If you are worried or not happy about their care, it’s important that your concerns are heard.
RESPECT - it is such an emotive and challenging time when you have an unwell child. While you are advocating, try and remember that everyone is trying their best and establish a mutually respectful partnership with your care team.
EDUCATE - the more you know about your options for supporting your little one, the more confident you will feel in expressing them.
NAVIGATE - sometimes things don’t change as quickly as we would like. Continue to navigate changing situations, be persistent with your concerns and continue to speak up.
TEAM – the best outcome for your child is if everyone is onboard and on the same page. Work with your team to develop a plan that meets their needs.
Procedural Support Advocacy
When we think about supporting your child through medical procedures there are some key moments where advocacy can be really important.
Before procedures
You can speak to your team about what procedures might need to be done during the day. You can advocate to have the cares clustered and talk about sedation and pain relief, if appropriate. You can also talk about options for positioning and different comfort measures or distraction. It’s ok to ask questions if you are unsure of things that they’ve talked about and get them to talk through the different steps that are going to happen.
During procedures
During procedures, you will be focusing on your child and supporting them. If you feel like there is significant distress, you can ask them to pause and take a moment to help your child regulate. Try and keep the lines of communication open and be confident to speak up if you need to reposition or try another comfort measure.
After procedures
Following a procedure, you can talk to the team and reflect on what went well or what might be improved for next time. If your child is upset or distressed, help them regulate and provide comfort before you have this conversation or feel in the head space to do this. If changes can be made for the next procedure, ask the team to document it so they can refer back to it. You might also like to make your own notes to refer to. If you have developed a procedural plan with the team, you can have it displayed in your child’s room or have it to bring with you to appointments.
Remember that this is a huge learning curve for most parents who find themselves in medical situations.
Equally, it is important that you remember to care for yourself through this period and find your own voice for you and your needs.
Asking for help for YOU - it is perfectly normal to struggle with all this! Be aware of your own warning signs for stress, anxiety, depression and burnout. Try to find people around you that you feel close to and trust - family, friends, neighbours, support groups are all good places to start. Seek out support as a preventative measure; internal supports such as social work or external psychological supports can be accessed through your GP or support help lines.
Kate Strickland is a community-based Child Life Therapist with a background in Occupational Therapy and Education. She works with infants, children, and young people along with their families in managing the stresses associated with health care encounters, procedures, hospitalisation and medical trauma. Visit healingheartsbeyond.com.au for more information.
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