The day after 21-month-old Isobel was diagnosed with a kidney tumour, she experienced her first hospital procedure, and it didn’t go well.
The toddler was swaddled in a blanket, being held and comforted by her father, as medical staff tried to put an NG [nasogastric or nose-to-stomach] tube up her nose.
“The NG tube was being pushed and pushed,” recalled Isobel’s mother, Laura Cullinan, at the recent annual lecture held by Children in Hospital Ireland, a charity which advocates for paediatric patients and co-ordinates 300 play volunteers. “What we didn’t realise was that she actually had very small nasal passages and that she needed an infant tube as opposed to one for a bigger child. She ended up having a nose bleed, and this continued for about 10 minutes.”
In hindsight, she said, “they should have, we should have” stopped the procedure “when she got so upset and she was in pain and blood was drawn”. In the end, the fitting of the NG tube was abandoned.
However, six weeks later, after Isobel had the kidney removed, she had to have an NG tube put in during surgery. Her parents did not know that was going to happen and, although they were informed it had been done as their daughter came out of theatre, Isobel had not been prepared in any way to expect it.
“With the consequence that she ripped it out when she woke up,” said Laura. “She was not happy. To this day she still talks about NG tubes, and she is 11 years old.” Don’t think a child is not going to remember a distressing procedure just because they’re 21 months old.
Laura, chief executive of Childhood Cancer, recounted this episode in response to the keynote address on improving healthcare experiences for children by Lucy Bray, professor of child health literacy at Edge Hill University in the UK. Bray has led an international team, including Irish representatives, of health professionals, academics, children, young people, parents, child rights specialists, psychologists and youth workers, in the development of new, rights-based standards for children and young people aged 0-18 undergoing clinical procedures. (isupportchildrensrights.com).
Some of what happens within healthcare harms children and can have life-long effects, warned Bray during her talk at the RSCI in Dublin, entitled Getting It Right, First and Every Time; Improving The Experience For Children and Young People Undergoing Medical Procedures. “Trust is very easy to lose and hard to restore,” she said. In looking at ways health professionals and parents need to work in partnership to take the trauma out of medical treatment for children where possible, she stressed she was talking about non-urgent procedures, not about emergency care for very unwell children.
Nobody likes the thought of distressed children being forcibly held against their will during healthcare treatments, so why is it still happening, she asked. “We know from all of the evidence that has come out over the last 20 years, [that] holding children for non-urgent clinical procedures is frequent, accepted and seen as an inevitable part of practice.”
Yet “restraint” is an unpalatable word for many health professionals. “We renamed restraints ‘clinical holding’ a few years ago,” said Bray, who worked for 25 years as a nurse in acute settings. Hospitals may deny restraint is used “because it is the parent who is doing the holding”. However, “what starts off as a gentle holding of a parent ends up something quite different two minutes down the line”.
While acknowledging how busy hospital staff are, it does not take a huge investment of time to deal with children in better ways right from the start, she suggested, and this may save time in the long-term. A child who is upset at the outset of a procedure is likely to be more resistant and become increasingly distraught, making it more difficult and slowing the process for professionals and parents alike.
Taking the “before”, “during” and “after” of any healthcare procedure, she outlined some of what had been learnt during more than two years of extensive research and consultations for the new standards about averting avoidable and potentially damaging distress among paediatric patients. Partnership between healthcare staff and parents is important because, she pointed out, the professionals have the bigger picture of multiple children’s experiences, whereas the parent is the expert on their own child.
With children, using language such as ‘you will not feel anything’ is not helpful
Children cope better with healthcare procedures if they know what is going to happen. But they can fall into an information gap, where parents expect healthcare staff to explain to their child exactly what is going to happen, whereas the staff presume the parent will have talked the child through what to expect.
The level of detail needed will vary from child to child, but if we do not brief them, children are likely to “fill in the blanks with something worse”, she warned. Most children (70 per cent) and parents (65 per cent) said they did not have enough information about what was going to happen.
Some parents mistakenly think it is better not to say anything ahead of an appointment, as one commented: “I didn’t want to scare them, so thought it was best if they didn’t know.” Using language such as “you will not feel anything” is not helpful either. Children look for simple information, she said, such as whether the room would be dark, who would be there and what would the medicine look like, along with sensory information such as what would the process feel like and would it hurt. If a child is going in for something such as an MRI scan, she suggested a parent could playfully practise lying very still at home with them before the appointment.
One of Isobel’s more positive experiences in procedural preparation at CHI@Crumlin came when she had to return there to have part of her lung removed when she was nearly four. By then the hospital’s St John’s cancer ward had become like a second home to Isobel and her mother. However, for the lung surgery, she was admitted into the unfamiliar surroundings of the cardiac unit “which was really traumatic for both me and her”, said Laura.
However, there was “a fantastic play therapist” who spent time with Isobel and Laura the day before surgery, to show them where they would be and what would happen, demonstrating procedures on a doll. They were taken down to the ICU where Isobel would wake up after surgery, and they talked through what to expect there with a “bubble box” and chest drain.
“She still to this day talks lovingly about having a bubble box! That is the difference with a proper intervention, as opposed to rushing intervention with a child,” said Laura.
Six years later, when Isobel was back in the hospital for removal of a tumour from her shoulder, they both suffered from the impact of hurried procedures. On the morning of the surgery, Laura and Isobel discussed the pre-med she would need before going down for theatre. But, as it turned out, there was no time for that.
“They had come for her just 10 minutes before going into theatre. They brought in a bed; she didn’t want to go in the bed, she wanted to walk down to theatre with her mother but is told that is not an option, so she is forced on to the bed. Everything is moving rapidly. The pre-meds haven’t kicked in and she has to get a cannula in her hand, but she doesn’t like needles.
Raising the conversation and awareness is a great way to ensure that we keep children and young people themselves at the centre of their healthcare experience— Anna Gunning, Children in Hospital Ireland
“She gets really, really agitated because we haven’t had time for that pre-med to work. She is really scared and I am getting panicked because she has never done this before.
“She gets air and gas and she is fighting going under anaesthetic and I am saying goodbye to her as she is fighting the anaesthetic. That is exceptionally traumatic for her. She now has a totally different relationship with Crumlin than she did before that procedure last year.”
Laura still feels maternal guilt, saying that, in hindsight, she had over-estimated what Isobel was able to cope with “and I shouldn’t have done that as her mum”. She was used to having a child who, as a four-year-old, had gotten used to complying with procedures over a long period of hospital care, and she did not realise that a child’s growing older changes things.
“Now Isobel is 11 and has her own fears and worries. That is where we need time to give our children the chance to adjust. It’s nothing you guys haven’t seen before,” she added to the assembled health professionals. “I just haven’t seen it before.”
Generally, before tests and interventions, children fare better if they have been given pain relief, are distracted and have a supportive adult with them to help them cope. To healthcare staff, Bray advocates a “clinical pause” before the onset of a procedure to check: Are the right people in the room? Has the child had analgesia? Has distraction been planned? Are comforting strategies in place? Does the child know what is happening? Is the parent calm and ready to support the child?
“Yet we know that this doesn’t always happen; too often, professionals jump in and hope for the best,” she said. Staff and parents may believe getting it done quickly is the way to go.
Bray added that it is important to document in children’s medical notes how procedures go and to reflect on what does or does not work in helping them cope, as that information could be helpful for the next time.
Panel member Michael Barrett, a consultant in paediatric emergency medicine at CHI@Crumlin, said he had a “deep sense of sadness at points” in listening to Laura talk about her experiences with Isobel. He has a particular interest in training and he recalled that when he was a trainee, his role models were doctors who talked to a child as if the child were the only person in the room. He said they could anticipate the children’s fears, the questions and the issues before they occurred.
Health professionals need to “better provide for young people going through our emergency settings”, he agreed. “There is a massive amount of distress in our hospitals at any one time.” Procedures can be painful not only for children, but also for their parents looking on.
As a health professional, he wants to get it right, he stressed. “Part of the challenge is that sometimes we treat the disease, not the patient. We need a reset in that regard and that is difficult in a really busy, busy environment, but that is not an excuse. We just need to build systems that can incorporate that and get on with it.”
Anna Gunning, chief executive of Children in Hospital Ireland (childreninhospital.ie), says this year’s lecture highlighted how sometimes there are very simple and quick changes that can be made to help improve the experience for children of having tests and interventions in hospitals.
“Even in the past week, as a result of the lecture, we know that seemingly small changes have been made in one hospital which will go a long way to easing the experience of some children and their families,” she tells The Irish Times.
“There is a lot more to be done, but raising the conversation and awareness is a great way to ensure that we keep children and young people themselves at the centre of their healthcare experience and educate and involve others around them in providing the best support possible.”