It is a lovely place, and very child orientated with big interactive play screens, beautiful multisensory gardens, a range of healthy places to eat, a big fish tank and my personal favourite touch, a set of stairs that play musical tunes as you walk up and down them – perhaps not every parents idea of fun as their child spent 20 minutes dancing up and down them but the novelty was definitely never lost on me (I refrained from dancing on them though – professional image to uphold etc!)
Hale Family Centre
The Hale Family Centre is a beautiful new facility for supporting families through their child’s admission. The aim is to look after the family as a whole and they work with the child life team and the social workers to ensure that the families who need support are referred down to them. One of their big roles is helping families with accommodation as many families have come from long distances to this hospital and can have very long admissions. They also provide a lot of different information and resources in different languages to help families navigate their hospital stay. They also provide clothes and toiletries for families that have had an emergency admission.
They also have a wellness centre, open 5 days a week that does yoga, reiki and meditation with caregivers. They also run small groups with families providing support and advice.
Child Life Specialist Team
Boston has a very impressive CLS team with 50 CLS’s working over the week in different roles including one who works specifically with autistic children and one who works in the family learning centre. There is a CLS in each of the 4 ICU’s. Communication is vital between them, a lot of the children who come to the ICU post surgery will have been on the ward to start with and the CLS who first meets them will get to know them and their family then pass all the information on to the CLS on the ICU as the family arrives there so that they have a good foundation to start with when they visit that child. They also do a lot of transitional care work so when the child is ready to leave the ICU, they will make sure that the family feels ready, give them tours and introduce the child to the CLS on the ward they will be moving to.
If the child is too sick to play, the CLS will do support work with the siblings and spend time with the families, helping to empower them and validate their experience. For longer term patients they do legacy work and celebrating any milestones that the child might reach. Music therapy is incredibly popular in the ICU’s, as even the sickest child can listen to music and the hospital has 4 music therapists and a volunteer harpist who comes in and plays!
I was most impressed by the range of developmental work that the CLS do in the ICU’s, particularly as lot of the patients, such as the neonates and the cardio patients are long term and in hospital from infancy. They work with the patient and see what stage they are at and create a developmental plan for that child that the parents and nurses can follow and update it regularly so the parents can recognise the child’s progres and helps them realise that there is a long term focus on that child’s wellbeing,not just on the illness. They have a Developmental Care Implementation Committee which is big multi disciplinary team meeting where members from all disciplines get together every other month to discuss the developmental needs of their patients, share resources and streamline care. One of the things that came out of this that I found most interesting were the information leaflets that are given to parents to help them know how to care for their child whilst in ICU which I thought was a great way to help give parents back a bit of control and help them still feel like parents.
These had initially only been written for babies but got formatted for older children after a school age child had been sick and ventilated for several days. When she woke up and was extubated she told her parents that she had thought she was going to die because her parents had been talking to her in whispers and in a way that they never normally talk to her and it had scared her. Her parents and the ICU team had not been aware that she could hear because she had been seemingly well sedated. A good reminder that it really matters how you talk and act around children in intensive care!