”It's important to find out what the children themselves think and feel”

Mar 29, 2016 | Research/Cooperation

Imelda Coyne, Professor at Trinity College in Dublin, is the holder of this year's visiting professorship in memory of Alva Myrdal at MDH. During the year she will disseminate her research on children's health and inclusion in their own healthcare with a special focus on participation in questions that influence their lives.

The UN Convention on the Rights of the Child has existed for over 25 years and in certain countries it is statutory. One of the provisions is that children have the right to express their views in all questions that concern them, for example when contacting authorities.
– Unfortunately the reality is not always like that. We don’t ask the children direct but instead let the adults say how the child is feeling, especially in healthcare situations. Some countries work actively for improvement, while considerably more lie behind. It is precisely this work that I would like my research to contribute to developing and accelerating. It is the right of all children to have a voice regardless of where they live, says Imelda Coyne.

Imelda Coyne has fifteen years' experience as a children's nurse. She has worked at several hospitals all around London and eventually became the first children's nurse in Ireland to defend a thesis. Something that permeates her research is that it is child centred and often builds further on previous studies that she has made.

In one of her big research projects, which was done at Great Ormond Street Hospital, the leading children's hospital in London, she studied the interaction between children and those who meet children in healthcare situations. This included, among other things, how people listened to children and whether these children became involved and included in their healthcare situation. The hospital has “The Child First and Always” as its motto, i.e. that the child always comes first and that the healthcare shall be adapted to the individual, but Imelda Coyne's research showed the opposite.
– The children were for example not allowed either to choose when they wanted to get up in the morning or when they wanted to eat breakfast. Sometimes they wanted to read a book, but then the lights could already have been turned off. The procedures were adapted to the nurses' and the doctors' times, which the parents were also forced to adapt to. It's important to find out what the children themselves think and feel, says Imelda Coyne, and goes on to say that the situation looked the same at a lot of other hospitals as well.
Another area that Imelda Coyne has researched about is the transition from being children to becoming adults with a chronic disease and thereby to begin to be responsible for their own health. She investigated how well prepared young people between 14 and 25 years old, who have diabetes, heart diseases or cystic fibrosis, were for dealing with their healthcare contacts.

The results showed that the children had seldom been particularly involved in decisions regarding their own care and neither had they been given sufficient knowledge about their illnesses.
– It's a big problem that only parents deal with the contact with healthcare and don’t involve the children sufficiently. They are illnesses that follow them all their lives and that the children sooner or later must need to learn to handle by themselves. A lot of young people live for the day and choose to put their health on one side. This can mean that they for example cancel check-ups, since they are unfamiliar with the procedures that apply in healthcare and have far too little energy to take in everything at once, says Imelda Coyne.
Imelda Coyne has developed a dynamic and interactive web page with up-to-date information in a language adapted to the target group, video films with other young patients that share their experiences of the transition, as well as information about the clinic, contact information and clear maps to the hospital.
– In order to get a good product I asked the children what they wanted the platform to look like, what they lacked today and how everything could be adapted to their needs. They think that it was good to be able to share their experiences in order to be able to help other children in this way. They wanted to make a difference, says Imelda Coyne.
Then when the project group launched the webpage steppingup.ie they engaged a young role model, a nationally well-known field hockey player with diabetes. The homepage was mentioned in several media contexts and won prizes in big project competitions. The fact that it received a lot of attention makes Imelda Coyne happy – it enables more children to feel that they get a better transition and in the long run better health and quality of life.
It is not entirely surprising that Imelda Coyne is a frequent speaker all over the world and well published in both national and international contexts. Among other things her work has led to her working a lot today with the Government in Ireland. They have appointed her as an ambassador for “The participation hope” – a commission where she will for example check how the Government works in order to promote children's rights to make their voices heard.
During the period between February 2016 and June 2017, Imelda Coyne will be visiting MDH on several occasions. The research team Chip^4 at the School of Health, Care and Social Welfare is her basic affiliation. Her next visit here will be at the end of May to continue to develop contacts with researchers, teachers and activities. On 19 May she will give an open lecture for students and teachers at MDH on the theme of children's health in Europe – about current challenges and priorities.
– My hope is to exchange knowledge with colleagues here at the University and the surrounding community via the Social Contract. I also hope to be able to meet a lot of students during the lectures I will be giving during the year, says Imelda Coyne.

About the professorship in memory of Alva Myrdal 

Since 2008 a visiting professorship in memory of Alva Myrdal has been established at MDH. The professorship honours Alva Myrdal's accomplishments as a researcher, politician and social commentator. The visiting professorship is financed by the Social Contract and can vary in respect of theme and content in areas that have a direct or indirect link to Alva Myrdal's initiatives for people's welfare and the transformation of family policy. The research and development projects will in a broad sense concern areas such as welfare, working life, education, international cooperation, and gender and value issues.