Children with medical complexity invariably have multiple care providers, in multiple locations, over multiple visits… add in family, school and community life and it is easy to see that teamwork and communications between all these different people is likely to be challenging, from time to time if not on a regular basis. Find here:
Investing in strong collaboration and clear communication is most important for the safety and quality of care of your child. As an added bonus, it is deeply meaningful to find partners who will contribute to the health and happiness of your child, who will join you on the rollercoaster ride.
Effective teamwork is based upon:
Respect between team members grows when members listen to each other and learn from each other in an open and non-judgemental way. Depending upon where you live and your child’s conditions, you may be assigned to a pre-existing team or be in the position of having to build your child’s core care team yourself. In either case, expect respect and offer it yourself. In situations where mutual respect is missing, it is almost impossible to build trust. If you feel that this is your situation, consider speaking to a member of the healthcare team or to a healthcare ombudsman.
Effective communication starts with sharing language. In Canada, you will be better able to support your child if you have a working knowledge of French or English. Translators are often, but not always available. Consider these options to improve communications:
Enlist the help of a family member or friend who speaks French or English to accompany you and your child to healthcare visits.
Keep written notes from different caregivers in a binder or journal so that you can show these communications to the other members of your child’s team.
Use a translation app on your cellphone.
Work with your child’s healthcare team to build a vocabulary for emergency situations so that you can get help quickly for your child if needed.
Ask your child’s healthcare team how you can best communicate with them. Have a plan for urgent and non-urgent issues/questions. If there is an on-call service, find out how to access this service. Prepare your questions and concerns in advance of a healthcare visit; writing them down is best. The more specific you can be about your concerns, the more likely that the healthcare team will be able to address them in some way. Consider keeping a written record or taking photos or videos to help explain a problem that is occurring.
As the parent of a child with medical complexity, you are likely familiar with emotions like anxiety and fear. To best navigate the ups and downs that may lie ahead, you will want to have continuity with your child’s healthcare team. Having a designated team means that quality care can be built on shared history, experiences and beliefs. This is important in developing confidence in your child’s healthcare team. Likewise, the healthcare team will want to build confidence in you – this is developing mutual trust. Start with respectful, clear communications. Be realistic and expect the bumps along the way that come with any relationship. While it is important to address conflicts and differences in opinions, don’t forget to also offer positive feedback.
It is important to know WHO is participating in your child’s care and their specific roles and responsibilities. Keep an up-to-date list of your child’s healthcare team, for example a list of contacts, that is readily accessible, ideally in your child’s care organizer. Don’t forget to let the healthcare team know who you are, including your skills, knowledge and goals for your child. Let the healthcare team get to know your child also – beyond your child’s medical concerns, share your child’s joys and capabilities. A simple photo of your child, when well, can encourage healthcare professionals to see your child as you do.
What are your main priorities for your child? What do think your child wants? What does your child show or tell you in this regard? Often the simplest goals are the most meaningful – for example, for your child to experience joy, as much as possible and as often as possible. Discuss these goals with your child’s healthcare team. Together, prepare written care goals (these may change over time) and make plans that are aligned with these goals. When your expressed goals are not aligned with the recommendations of the healthcare team, take the time to reflect on the differing perspectives; use curiosity and not anger to try and explore why the goals are not aligned.
Getting the most out of a healthcare visit
At each healthcare visit, be prepared and bring with you:
Your child’s care organizer with key documents.
An up-to-date list of medications with specific dosages. Ideally, have on hand a paper copy that you can give to the healthcare team.
A travel bag, containing essential equipment, supplies and a toy/comfort object/item that can be used to soothe or distract your child.
Healthcare visits tend to fall into three categories:
Scheduled visit: this is a chance to review your child’s general health and well-being. Most importantly, it is a chance to problem-solve together with your child’s healthcare team on issues that are not in “crisis mode”. It is also a chance to do preventive care, that is to look at ways to prevent problems for your child (like ensuring that your child has healthy teeth and bones…). Sometimes families of children with complexity avoid scheduled visits because their child has so many other visits… in fact, regularly scheduled visits, with good preventive/early intervention care may help reduce urgent care visits.
Be prepared: keep a written list of concerns, bring photos or videos to detail issues. Take notes during the visit to keep track of the conversation and plans. Bring a family member or a friend to help you listen and take care of your child during the visit.
Urgent care visit: this is a visit that is focused on a particular issue that your child is experiencing, like fever or a new onset of diarrhea. Ideally, an urgent care visit takes place with a team that already knows your child.
Be prepared: to concisely and clearly communicate your child’s main healthcare issues. Consider asking these questions:
Why is my child having this new issue?
Is it related to my child’s other healthcare issues?
What needs to be done to better understand the problem?
What needs to be done to treat the problem?
If a medication is required, will it interact with my child’s other medications?
What follow up does my child require?
How will I know if my child is improving?
What should I do if my child is not improving?
Emergency visit: this is a visit, usually in an Emergency Department that is focused on a serious, urgent problem. It may be a potentially life threatening problem. Your child is likely to be assessed by a healthcare team that is not necessarily familiar with your child’s history and issues. Clear communication is absolutely necessary at this type of visit.
Be prepared: to quickly identify your child’s main issue and to describe it concisely. Refer to written notes to be specific, for example, about fever or oxygen saturations. Clearly state your child’s allergies, intolerances and special alerts, if any. If you have a care summary or know that there is one on your child’s electronic medical record, tell the Emergency Care team where to find it. Ask the emergency team to contact your child’s main healthcare provider for more details. Stay with your child if possible and offer comfort. Call a friend or family member to join you if possible.