Undertaking Research with Barretstown: A Personal Experience
Dr Gemma Kiernan (Ph.D., P.Grad Dip. Psychotherapy, C.Coun.Ps.S.I., M.I.A.C.P.), Associate Professor in Psychotherapy, School of Nursing, Psychotherapy and Community Health, Dublin City University
I began working in Barretstown back in 1996 following completion of my psychology degree. It was a transformative life experience for me. After years of academia and study, working in Barretstown as a ‘Cara’, Unit Leader and subsequently as Senior Staff Director meant living in and working with children with serious life threatening illnesses like cancer, haemophilia and HIV.
The children I worked with in Barretstown came from all over Europe, and because of their illness they faced many challenges - physical challenges for some as they tried to cope with crutches or wheelchairs , emotional challenges as their confidence and self –esteem were often low, and social challenges as they tried to navigate friendships and school in between often painful treatments and frequent hospital stays. When they arrived in Barretstown for their 10 day therapeutic recreation programme, these children were often quiet and subdued but over the course of their stay and as they engaged with the specially designed therapeutic recreational activities incorporating art, canoeing, horseriding, theatre and music to name but a few, they blossomed. They talked about their illness and treatments, what they liked about coming to Barretstown and what they would change. Many were wise and had courage beyond their years and they all had meaningful insights about what Barretstown meant to them.
This prompted me to put together a proposal for a research study that would explore children’s views about the Barretstown programme and the psychosocial effects of participating in the programme. There was a supportive policy context for my research because at that time there was an emphasis internationally and nationally with the UN Convention on the Rights of the Child and the National Children’s Strategy on giving children a voice in matters that affected them. Barretstown welcomed my research and GlaxoSmithkline funded me to undertake it for my Ph.D. The findings resulted in both academic papers and knowledge and practical developments at Barretstown. More significantly, it generated an appreciation of the need for and value of research informed evidence based practice, opening a door to ongoing research collaboration with Barretstown.
When I joined DCU in 2005, I continued to undertake research with Barretstown, designing and implementing research to support Barretstown’s service development into new areas. Together with my longstanding friend and research collaborator Professor Suzanne Guerin (Head of UCD School of Psychology) who I met during my first summer working in Barretstown, we undertook research projects including an evaluation of Barrestown’s therapeutic recreation programme for families with a child with a serious illness and studies charting the development and outcomes associated with Barretstown’s bereavement programmes. Collaboration with Suzanne has resulted in both PhD research, peer reviewed publication and continued contribution to Barretstown’s programmes.
In 2018 and in keeping with DCU’s mission to ‘transform lives and societies’ I joined the Barretstown Childcare Advisory Committee where I am responsible for working with Barretstown staff to help identify Barretstowns research priorities as their programmes continue to grow and expand. With an organisational research policy and protocols in place, I am currently directly involved in undertaking research exploring staff and families experiences of an online therapeutic recreation programme ‘Barretstown Live’ and research to inform the development of a programme for adolescents and young adults with cancer. I play a supportive role in facilitating Barretstowns engagement with other research projects and partners including an evaluation of their Hospital Outreach Programme (HOP) currently being undertaken in collaboration with researchers from NUI Maynooth and their participation a project supporting patient and public involvement (PPI) in research with researchers from DCU .
It has been a privilege for me to work with such a progressive organisation for almost 25 years. Barretstown makes a real and evidenced difference to the well-being of children living with serious illness and their families. Through my DCU role and research skills I hope to continue to make a contribution to programme development and ensuring children and families have the best possible supports and experiences.
If you would like further information about conducting research with Barretstown, you can contact me at gemma.kiernan@dcu.ie
Dr Gemma Kiernan Ph.D., P.Grad Dip. Psychotherapy, C.Coun.Ps.S.I., M.I.A.C.P. is an Associate Professor in Psychotherapy, School of Nursing, Psychotherapy and Community Health at Dublin City University.