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Despite the fact that my son is considered a \u201csick kid\u201d\u2014a child with multiple, chronic conditions\u2014he actually hasn\u2019t been in hospital for years. About a month ago, his winter cold turned into pneumonia, and we\u2019ve been reacquainted with hospital life with a vengeance. Parenting a child in hospital for the first time in nearly a decade, I can\u2019t help but notice how I\u2019ve changed.<\/p>\n
The changes in me reflect\u00a0what I\u2019ve 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:<\/p>\n
I write things\u00a0down.<\/strong> 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\u2019ve also brought in a white board that hangs in plain site for everyone, and it\u2019s there that my husband and I post the questions we want staff to answer or where we list\u00a0things we need. It\u2019s interesting to watch how staff have started turning to\u00a0the board during rounds or at shift change and pro-actively addressing things on it.<\/p>\n I look things\u00a0up.<\/strong> In the past I relied on staffs\u2019 explanations of\u00a0what was happening. Now I look up terms, conditions and treatment that I don\u2019t understand or just try to learn more\u00a0when things don\u2019t make sense to me. I also know more about how to tell the difference between trustworthy information and speculative advice.<\/p>\n I consult my on-line patient community.\u00a0<\/strong>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\u2014maybe\u00a0not with the academic rigor\u00a0that scientific articles offer, but it\u2019s great to have a place to turn for info.<\/p>\n I ask better questions.<\/strong>\u00a0In addition to writing my questions down so that I don\u2019t forget them, I also ask questions to clarify and confirm what I just heard, or questions\u00a0about what should happen next so I can prompt folks if it doesn\u2019t (like what time the next pain med\u00a0will be given). This is definitely a learned skill for me, and in health care it\u2019s often taught to health care workers as a technique called Teachback<\/a>. Providers are encouraged to prompt patients and families to summarize and repeat back what they just heard as a way of ensuring that they\u2019ve understood. No one is asking us to do this at the hospitals we\u2019ve been in, but we find it helpful to do it anyway.<\/p>\n I am better at summarizing my concerns. <\/strong>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<\/a> techniques years ago, and it\u2019s especially useful when you\u2019re 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.<\/p>\n I am better at communicating what\u2019s important to my son and to our family.<\/strong> There is rarely only one treatment option\u00a0in any given medical situation. When there is more than one choice about how to proceed, I want my son\u2019s priorities to be taken into consideration. It\u2019s up to me to let them know who he is as a person and what his priorities are. I don\u2019t always know for sure, and I let them know that, too. If I can see that he\u2019s anxious\u00a0and they want to bring in five students to examine him, I\u2019ve learned to say no. If he hasn\u2019t slept well, I ask them to clean up the medical schedule to limit interruptions the following night.<\/p>\n I have better self-care coping skills that let me stay more present for what\u2019s happening.<\/strong> When my son was younger, I didn\u2019t understand that I needed to take care of myself in order to take care of him. It\u2019s 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\u00a0recent\u00a0political turmoil, that hasn\u2019t been easy or even felt like the right thing to do at times.<\/p>\n I better understand and respect the roles of the professionals on my son\u2019s team.<\/strong> I used to think that the doctor was the boss of the care team, and that everyone else was there to do the doctor\u2019s bidding. Now I understand that each professional group has its own focus, modality, and power. I try not to waste doctors\u2019 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\u2019t 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.<\/p>\n I consider myself part of my son\u2019s health care team.<\/strong>\u00a0In the past, I used to see myself as part of my son\u2019s 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\u00a0can 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\u2014and these are all critical to his health. So I am<\/strong> 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 \u201cvery sick.\u201d 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\u00a0providers are concerned about. In short, I expect to be treated as part of his team. (In fact, I consider\u00a0him as part of the team, too, but that\u2019s a topic for another day.)<\/p>\n I show the staff what my son is like when he\u2019s healthy.<\/strong> My son was really sick for a while there, and was barely conscious at times. Combined with his developmental disability, his symptoms\u00a0made it difficult for those who didn\u2019t 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\u00a0during 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, \u201cOK, that\u2019s what we\u2019re aiming for.\u201d Seeing him healthy helps everyone interact with him in a way that encourages healing.<\/p>\n I still have so much to learn. I think health care does too. I\u2019m not sure \u201cthe new me\u201d 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.<\/p>\n Cristin<\/span><\/span><\/strong>\u00a0Lind<\/strong> supports partnership between patients, families and professionals to develop innovative policy and processes.\u00a0<\/span><\/span>She blogs about raising a child with complex needs at\u00a0www.durgastoolbox.com<\/a>.<\/span><\/span>\u00a0She is a member of the BMJ\u2019s Advisory Board and Patient Partnership Advisory Group.<\/span><\/span><\/em><\/p>\n","protected":false},"excerpt":{"rendered":" Despite the fact that my son is considered a \u201csick kid\u201d\u2014a child with multiple, chronic conditions\u2014he actually hasn\u2019t been in hospital for years. About a month ago, his winter cold […]<\/p>\n