The power of one-page profiles when paired with a flexible, warm and compassionate team.

14 May 2015 | By Deb Watson

Four weeks ago my 2.5 year old son James was supposed to have his tonsils and adenoids removed

 

We talked with him from 2 days before to help him to prepare, went equipped with stickers, various surprises, and a bag full of his favourite foods, along with a new one-page profile. I had multiple copies of the one-page profile, the staff I handed it to seemed mildly curious but uncertain of what to actually do with it. The main nurses had read the profile but it was clear that neither the surgeon or the anaesthetist had read it.

The waiting area for surgery was full of nurses and doctors, people in white gowns on beds, and in spite of brightly painted walls, and toys to play with, it was clearly a foreign and scary environment

James clung to me, cried and asked repeatedly to go home. When we went into theatre, James was presented with the mask and told to blow up the green balloon. He held desperately to my arm, refusing to lie down and cried until he was unconscious. I was then ushered out of the room and told that they would phone me to come back down before he woke so that I would be the first person he would see when he woke.

I spent an anxious 40 minutes before they phoned and asked me to come to recovery. The lifts seemed to, and actually did take forever to arrive, and when I got the recovery area reception, the staff person made me wait while she went to check whether I was actually allowed in. By the time I got to James he was well and truly awake, crying and coughing uncontrollably. Both hands were bandaged in spite of his one-page profile saying that he even hates band aids, let alone large bandages.

In a 30 second conversation, the surgeon informed me that they hadn’t been able to remove tonsils or adenoids as there was a blood vessel in the way. The plan then was for a CT angiogram under general anaesthetic to see where the blood vessel actually goes and whether it is safe to proceed with the operation. I had to try to take all this in, while holding my very distraught toddler.

Back on the ward, James was still very upset

He desperately wanted the bandages taken off his hands. At this point it seemed that people finally had some idea of the relevance of the one-page profile. One of the main nurses was an agency nurse who told us that the profile was helpful, particularly given that she doesn’t usually work with children. She talked with James about diggers and tractors as she attempted to distract him from his hands. Another nurse popped her head in and said “I’ve just read the profile, we have the Cars movie on DVD. Would you like me to put it on for him?” This was the turning point, and from there, with added help from a number of surprises that we brought out at critical moments, James began to feel more at ease.

Last week, we had the angiogram at the Royal Children’s hospital

We went into it a lot more informed about what would and would not work for James. His profile was slightly more tailored to the experience, and I made sure that I sent it through with the pre-admission forms. I felt particularly anxious this time round given that we were also moving house 2 days after, and was aware that it was a deeply unsettling time for James. With the busyness of moving, I didn’t follow up the one-page profile and look into what support was possible until the day before, but was able to book in a play therapist to support the process for James. She had not only read the one-page profile, but also ensured that the nursing staff, anaesthetic team and radiographer had all received copies and read it too.

James was shaking and crying before I even got him out of his car seat, by the time we got to the hospital reception, he was sobbing. Thankfully, our admission process was beautifully tailored to James and his interests. James cried and pleaded to go home while I signed forms. The receptionist ducked out to an office behind her and came back with a little car from the Cars movie and said that James could play with it. James stopped crying and asked if he could take it home, she quietly said that yes he probably could take it home if okay with me.

The play therapist came to collect us, took us to a quiet ward, came back with a toy box full of toys that she knew from the profile would interest James

She began to get to know him, while subtly talking to me about what I thought would work best as far as administering the anaesthetic. One of the anaesthetic doctors came in next and instantly asked James about what he was playing with, asked him about his favourite characters from the Planes and Car movies, and sat on the floor to talk to him. The play therapist, Lydia, continued to engage James, focusing first on him and how he was doing, and secondly on the impending processes and how best to approach them. A nurse came in to move the process on and to give the sedating medicine that we had decided to go with, and to check all his details. Identification bracelets were left off until James was unconscious, and they were removed within minutes of him waking up.  There were still tears immediately before he went to sleep and after he woke up, but on the whole, the experience was much more positive for us all.

Everyone involved commented that the one-page profile was hugely helpful in getting to know James

Particularly when they often only have such a short period of time to get to know a child and help them through the experience. There were significant differences between our two experiences. Some could likely be put down to the specialist nature of the Royal Children’s Hospital as opposed to a paediatric ward in a generalist hospital. There were other factors that I believe also made a significant difference including:

 

  • The flexibility and preparedness of a team to listen to what matters to the patient and see beyond the medical procedures
  • Professionals’ acknowledgement of the impact of other elements on how well the medical procedures could go, particularly from the perspective of the child. Actually valuing what’s important to the child in relation to a whole lot of processes that are typically seen as non negotiable.
  • A dedicated person to receive the one page profile and ensure that it was read and honoured by those who would be working with James
  • A focus from all involved on James first, myself (his Mum) second, and process and protocol third.
  • Warmth and compassion from a team that was able to see and understand the deep impact of such procedures on a small child in spite of how routine it all is for them.

 

Now as we await results of the angiogram, I feel a lot clearer about the best ways to proceed if James’ tonsil & adenoid surgery can in fact proceed. His profile can be updated, I will ask a lot of questions at pre-admission time, including whose responsibility it is to ensure that the profile is read and honoured, and I will also look into the possibility of selecting the surgeon and hospital.

Can this sense of feeling like a stronger advocate for my son be attributed solely to the use of a one-page profile? I’m not sure, but I think it definitely played a strong role. The more I articulate what matters to my son in the context of difficult or traumatic experiences, the more confident I am that this is what lies at the heart of my role as a mother. Seeing even a small impact of the one pager at the first hospital strengthened my resolve for the second hospital, and now having seen it used exceptionally well, I feel even stronger for how I can use it in the future.

Thanks to the radiography and play therapy departments at the Royal Children’s Hospital in Melbourne for showing how powerful one-page profiles can be to change a very young child’s experience of hospital.

 

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