Parent Charting : a family-centred breakthough whose time has come

I recently joined the PFACNetwork, an email list serve for staff and parents involved in family advisory work. As part of the new NICU family care committee I undertook to gather information about parent charting, which is the involvement of parent's in their kid's hospital chart. This involvement can extend from helping nurse's observe and measure liquid output to being responsible say for occupational therapy 'scores' for your child to direct parent input of data into the electronic care plan. In my dreams, I imagine a time that a parent can click on a link, enter a username and password and hit Comment. Up pops a little field into which the parent writes about positive moments and challenges, questions, reflections etc. Now the parent's thoughts are recorded forever beside those of the staff.

I was grateful to Joanna Kaufman, RN, MS, Information Specialist at the Institute for Family-Centered Care for recommending the article "A hospital takes up the challenge of offering patients open access to their charts as well as directing me to Dr Ted Eytan's blog focused on electronic health record issues. What becomes quickly apparent is that the main focus of parent charting is on the 1) the desire by adult patients to access a portable electronic chart that they have more control over 2) leading to a range of new services offering online charting, from Revolution Health to Google amid 3) perceived time savings and increased accuracy as medical staff update electronic charts in real time.

That "parent charting" in a paediatric setting is still in its infancy is confirmed by a 2005 study that interviewed nurse managers at 61 U.S NICUs to learn about parent participation in a range of NICU activities and which reports:

"Sixty-two percent of NICUs routinely allow parents to be present at medical rounds; 33 percent do not; and 5 percent allow it some of the time. Of the hospitals that allow parents to be present, 76 percent encourage parents to participate in the discussion while 13 percent report participation is physician dependent. Only 26 percent of the NICUs have a written policy regarding parent presence or participation in medical rounds. Substantially fewer parents participate in nurse shift changes. Only 25 percent of hospitals indicate parents are routinely allowed to be present, while 13 percent allow it some of the time. Few units encourage participation in shift change discussions. Parents are allowed to read their child’s medical record in 91 percent of responding NICUs. However, an overwhelming majority of units require or encourage parents to have staff present when the chart is read. Only 3 percent of NICUs allow parents to enter notes in their child’s record. (emphasis added)" ("Family Centred Care in the NICU", Children's Hospital's Today, Winter 2005, Mitch Harris, George Little M.D)