New research shows children feel ignored and are disappointed with their medical consultations. Claire O'Connell reports.
Children in Ireland are being largely ignored in medical consultations and need to be given a stronger voice, a new study has found. The results of the interdisciplinary project, which was funded by the Office of the Minister for Children, will be discussed at a conference this week at Dublin City University (DCU).
Children are not being involved beyond a token level in consultations with health professionals, according to the study's lead investigator, Dr Imelda Coyne, a lecturer at DCU's school of nursing.
The researchers interviewed 55 chronically or acutely ill children aged seven to 18 at three Irish hospitals. "We asked them about experience of attending hospital, experiences of consultation, involvement in decision-making, relationships with health professionals and the factors that enhanced or hindered them from participating," says Coyne.
While some children were satisfied with consultations, the majority felt ignored and they expressed feelings of disappointment, betrayal, sadness and confusion.
"They described situations where they were minimally involved, where the health professional would ask them a question and that would be it," says Coyne. "They often described health professionals as being in a hurry and the children had difficulty in getting to know them due to lack of time and lack of continuity due to shift work."
And even older children who are familiar with hospitals may hold back on participating, according to Coyne. "There were older children with chronic illness who described still leaving decisions to their parents because it had always been done like that. It is the model they grew up with and they are socialised into thinking this is their role," she says, expressing concern because the patients would soon be entering adult services and would need the skills to ask questions by themselves.
Coyne says some children in the study reported happier experiences of consultations where health professionals gave time and attention to their concerns, which had a positive impact.
"The children liked receiving information - it helped prepare them for what to expect, it ameliorated their worries and provided reassurance, and it helped them cope with the hospitalisation once they knew what was going on," she says.
Coyne adds that familiarity with the medical staff helped put children at ease: "If there were children who were in and out a lot and knew the health professionals well, it made them feel they could ask questions more freely or express their concerns."
A report arising from the study will be officially launched later in the summer and makes several key recommendations for supporting children's involvement in medical consultations. These include increasing general awareness of children's rights to have a voice and training medical staff to encourage participation by younger patients. It also recommends providing an organised forum for younger patients and helping them develop the skills needed to express their concerns.
The report calls for further research into how parents and health professionals can facilitate children to participate, says Coyne. "The general impression at the moment is that there is not a culture of listening to children," she says. "We should not see children as incompetent 'becomings', rather they are beings, they have a competency of their own. They have a voice and they are able to express their thoughts and feelings."
Participation of children in consultations is an enormous issue and we underestimate children at our peril, says Dr Fin Breatnach, a consultant paediatric oncologist at Our Lady's Hospital for Sick Children, Crumlin, who welcomes the new report. "We have been using the phrase 'ah, he's only a child' for years and I think it is a derogatory term to use for children," he says. "They don't have our life experiences, they don't have our communication skills, but they have an enormous capacity to understand if you use appropriate language."
In addition to using simple terminology, Breatnach believes play therapy can also help convey the concepts of what's involved in treatment. He says it is important to appreciate a child's growing comprehension of a chronic illness as they get older. And he makes time to find out what parents and children want. "Time is our biggest enemy," he says. "But if you make time the children do appreciate it."
He says that when dealing with serious illness such as childhood cancer, it is important to involve children, but there are some issues best discussed with parents only.
"You would very much like to have all conversations with mum, dad and child, but mum and dad want to ask questions which would frighten many children, and the information you might give in reply to those questions might be equally frightening."
However, he has seen remarkable examples of children's abilities to deal with their situations. "I have seen children of six or seven years of age who were dying and they were writing their own will. It's quite astonishing and very touching," he says.
We need to ask what children themselves feel about hospitalisation, says Rita O'Shea, director of nursing at Temple Street Children's University Hospital, who also welcomes the report. "It is important that children participate actively in consultations and that we don't speak over their heads," she says.
O'Shea says hospital staff strive to create a home-like environment for children in wards, and that nurses work 12-hour shifts with their allocated patients to help improve continuity.
She shares Coyne's concern about preparing older children for moving into adult patient services. "That is a big grey area which is not fully developed and we are trying to bridge that gap," she says. But she believes the proposed new children's hospital set-up will bring benefits for children and their parents. "When we have the new paediatric hospital where you have the children, adolescents and adults all on the one site, it should be a seamless transition."
Coyne and the study's co-authors, Eilis Hayes and Dr Pamela Gallagher, will present their findings at a session on research with children in Ireland at DCU's Health4Life conference. The three-day conference starts tomorrow and marks the launch the school of nursing's Health4Life research portfolio, a strategy of applied, interdisciplinary research that will make a real difference in practice, according to Prof Chris Stevenson, acting head of the school.