Despite the fact that my son is considered a “sick kid”—a child with multiple, chronic conditions—he actually hasn’t been in hospital for years. About a month ago, his winter cold turned into pneumonia, and we’ve been reacquainted with hospital life with a vengeance. Parenting a child in hospital for the first time in nearly a decade, I can’t help but notice how I’ve changed.

The changes in me reflect what I’ve learned from being active in health care advocacy and improvement and may predict the kinds of patients and families the health care system needs to be prepared to work with. Here are some of the differences between then and now:

I write things down. I have a notebook on the table next to me where I jot down when medications or treatments are given, when tests are taken, and questions I want to remember to ask. I’ve also brought in a white board that hangs in plain site for everyone, and it’s there that my husband and I post the questions we want staff to answer or where we list things we need. It’s interesting to watch how staff have started turning to the board during rounds or at shift change and pro-actively addressing things on it.

I look things up. In the past I relied on staffs’ explanations of what was happening. Now I look up terms, conditions and treatment that I don’t understand or just try to learn more when things don’t make sense to me. I also know more about how to tell the difference between trustworthy information and speculative advice.

I consult my on-line patient community. My son has a very rare genetic syndrome, and sometimes the care team has questions about whether the unusual presentation of some of his symptoms are related to this syndrome. Luckily, the family community we have on Facebook can be a resource—maybe not with the academic rigor that scientific articles offer, but it’s great to have a place to turn for info.

I ask better questions. In addition to writing my questions down so that I don’t forget them, I also ask questions to clarify and confirm what I just heard, or questions about what should happen next so I can prompt folks if it doesn’t (like what time the next pain med will be given). This is definitely a learned skill for me, and in health care it’s often taught to health care workers as a technique called Teachback. Providers are encouraged to prompt patients and families to summarize and repeat back what they just heard as a way of ensuring that they’ve understood. No one is asking us to do this at the hospitals we’ve been in, but we find it helpful to do it anyway.

I am better at summarizing my concerns. I have learned that being able to succinctly communicate relevant history and concerns saves time and increases my credibility with staff, which in turn means that they listen when I talk. I wrote about the SBAR techniques years ago, and it’s especially useful when you’re in the hospital. When a group of doctors, residents, interns and specialists walk into the room, it helps to be able to get your concern across quickly.

I am better at communicating what’s important to my son and to our family. There is rarely only one treatment option in any given medical situation. When there is more than one choice about how to proceed, I want my son’s priorities to be taken into consideration. It’s up to me to let them know who he is as a person and what his priorities are. I don’t always know for sure, and I let them know that, too. If I can see that he’s anxious and they want to bring in five students to examine him, I’ve learned to say no. If he hasn’t slept well, I ask them to clean up the medical schedule to limit interruptions the following night.

I have better self-care coping skills that let me stay more present for what’s happening. When my son was younger, I didn’t understand that I needed to take care of myself in order to take care of him. It’s a challenge, but I try to prioritize getting sleep, eating as best as I can, and staying connected with people and ideas that keep me positive and strong. Given recent political turmoil, that hasn’t been easy or even felt like the right thing to do at times.

I better understand and respect the roles of the professionals on my son’s team. I used to think that the doctor was the boss of the care team, and that everyone else was there to do the doctor’s bidding. Now I understand that each professional group has its own focus, modality, and power. I try not to waste doctors’ time with nursing issues, and vice versa. I appreciate the creativity and problem solving of the physical therapists and the child-life specialists, and ask for their help. I value the work of the cleaning staff and the food services personnel, and I try to make sure they know it. I know that the radiologist won’t give me much info on what they see on the ultrasound unless I ask in a very particular way. Knowing who does what saves time and prevents frustration.

I consider myself part of my son’s health care team. In the past, I used to see myself as part of my son’s entourage, and the health care providers as his care team. Now I think differently. I know that whether or not the hospital staff see me as such, I am part of his care team. I know his medical history and priorities better than anyone. I often know the most about his genetic syndrome. I am sometimes the only person who can literally understand what he says. I know that my vigilance can prevent errors and increase his safety; people make mistakes and hospitals are not always healing places. I know that my involvement can reduce the length of his hospital stay. And if nothing else, I know that the hospital staff are too busy to get his food, bathe him, make him comfortable and keep him sane—and these are all critical to his health. So I am part of his team. Therefore, I expect to be part of treatment decisions. I expect to be able to sleep in his room and be with him around the clock. I expect to be told about his condition using actual medical terms, not just vague notions of him being “very sick.” I expect to be included in rounds. I expect to know what tests are being done, and I expect to see those test results as soon as possible. I expect to be able to have a say regarding who is on his care team. I expect to know what his providers are concerned about. In short, I expect to be treated as part of his team. (In fact, I consider him as part of the team, too, but that’s a topic for another day.)

I show the staff what my son is like when he’s healthy. My son was really sick for a while there, and was barely conscious at times. Combined with his developmental disability, his symptoms made it difficult for those who didn’t know him to see him for who he really was. We created a photo slide show on his iPad of pictures that showed him happy and healthy, and we had it playing during shift change and rounds. We hung his smiling school photo above the hand sanitizer. During this past month, one of his nurses watched the slide show and turned to us and said, “OK, that’s what we’re aiming for.” Seeing him healthy helps everyone interact with him in a way that encourages healing.

I still have so much to learn. I think health care does too. I’m not sure “the new me” has always been welcomed by staff during the past month. Hospital procedures are clearly the product of an earlier time, when patients and families were passive objects of health care, and providers were the only experts. Things have changed, and these changes are at times rather painful for all of us, patients and providers alike. Hopefully my experiences can give a small glimpse in how more active inclusion of parents when their child is hospitalized can show where we are headed, and why we might just want to get there faster.

Cristin Lind supports partnership between patients, families and professionals to develop innovative policy and processes. She blogs about raising a child with complex needs at www.durgastoolbox.com. She is a member of the BMJ’s Advisory Board and Patient Partnership Advisory Group.