Patient & Parent Perspectives on
Compassionate Care

Over the years, we’ve collaborated with the Kids Advisory Board and the Family Advisory Board to collect feedback about how patients and families perceive interactions with staff – both about what works well, and what we can improve upon. The comments and videos below include valuable insights from real patients and families about care and bedside manner.

In this video, parents of long-time Lurie Children’s patients share what they’ve learned about dealing with a chronically-ill child, and stories about the relationships they’ve developed along the way.

In this video, our patients offer their unique perspectives on what it’s like to be chronically ill and the relationships that have inspired them during their treatment at Lurie Children’s.

Additional Advice from Parents

You are an expert in medicine, but I am an expert in my kid.

  • If I say he looks like he’s in pain, understand that I have more context about what pain in my child looks like.
  • If I say she’s not going to like a test or procedure that you have to do, work with me on a strategy to make it as bearable as possible.
  • If I make a crazy suggestion about what might make a test or procedure more tolerable for everyone, hear me out. For example, be open to the suggestion of distracting a child with a lollipop during a blood draw.

I feel anxious and like I am not in control, and there are ways you can help.

  • Tell me your plan for the day’s treatment, including an approximation of when you are coming back or calling me back.
  • Listen to what I have to say, and let me know that you have heard me.
  • Work to build a relationship with me.

Kids can feel anxious and like they’re not in control of what’s happening to them while they’re in the hospital. There are ways you can help give them a sense of control.

  • Ask them if they want to know what’s happening in their treatment and what the plan is, if they’re old enough.
  • Give them age-appropriate choices. For example, you can ask them which body part they’d like you to examine first, or what color gown they’d like.
  • Try to connect with them about something other than their illness. For example, if they have a lot of pictures up of their favorite movie or sports team, ask them who their favorite character or player is.

I may not have been home, showered or slept in days or weeks.

  • When my kid is at Lurie Children’s, I am at Lurie Children’s. Everything else stops. Keep that in mind if I get a little tense, or ask for something to be explained or repeated.
  • Parents of all kids are tired – parents of kids with special needs are downright exhausted.
  • I am missing my spouse and other kids (and my bed, food, “normal” life).

Kids and parents exist in a context outside of the hospital, and having a sick child disrupts a whole household.

  • Siblings’ lives are disrupted when a parent is away.
  • The parent’s job may be affected.
  • Normal family schedules are stressed by the needs of the child with medical concerns.
  • When we are home from the hospital, there are lots of things that need to be done along with caring for my child. I will do my best to get it all accomplished, but it’s important for doctors to be understanding when things don’t happen like clockwork.

Children in the hospital are out of their normal sleeping and eating routine, and that can make them fussy.

  • Remember that outside of all the times a doctor is in to see my child, other activities are happening in their room that can disrupt their schedule: vital checks, meds, labs, room cleanings, etc. While I understand it all needs to happen, work with me where you can. A kid that isn’t completely sleep deprived on top of being sick will be much easier for us all to deal with.
  • If you see that a patient you need to check on is asleep, if possible, visit other patients first.

Cases don’t always exist in a vacuum – it’s common for multiple specialists to be treating one child.

  • Talk to each other.
  • Try to get all the information from other specialties before making a recommendation.
  • It’s easier on families if doctors communicate with the other doctors who are involved. If parents are the middlemen between the doctors, it’s easy for messages to get lost or confused.