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January 2005

A new approach to paediatric palliative care

Janet Burke Play Therapist
Bear Cottage Children's Hospice, Manly & Churchill Fellow 2004

Making every moment count

Dr Dorothea Sandars and Irene Lee Churchill Fellowship - for the study or update of skills for the enhancement of Palliative Care delivery.

Bear Cottage, having first opened its doors in March 2001, is only the second children's hospice in Australia so our history is relatively short. When I first saw the advertisement for a Play Therapist at the Cottage I knew that this was the job of a lifetime, and on finding that I was the successful applicant, I could not believe my good fortune. With a background in teaching the leap to health was a slightly daunting one. But during the almost four years since I began this job there hasn't been a dull moment, my knowledge and skills have increased everyday, and my interactions here have changed my life irrevocably for the better!

The children and families with whom I work are completely focused on living every moment to the full. Their humbleness, generosity, and enthusiasm in the most heart rendering of circumstances provide daily perspective on the good fortune most of us experience in our lives.

Children relaxing in the Bear Cottage spa

Children's hospices differ from adult hospices in that they provide respite care for terminally ill children and their families throughout their disease trajectory in addition to offering end of life and bereavement support for patients and their families. Initially my role at the hospice was to develop and implement recreational programs for the patients in residence. As our service developed it soon became evident that the siblings of our patients had their own complex set of needs and required as much, if not more, support than the patients themselves. My role soon grew to include the provision of recreation opportunities for siblings, as well as providing school support for siblings and patients staying at the hospice.

In late 2003 in cooperation with our newly appointed Social Worker, I assisted to develop and implement a model of sibling support involving designated support days. This program has now been successfully running for just over twelve months. Another facet of my role at the hospice has been active involvement in the Bereavement Support working party.

I am the only Play Therapist in Australia to work outside of a children's hospital, and to work solely in the area of paediatric palliative care. I have often therefore struggled with devising best practise models of support for the children and young people in our care.

The Churchill Fellowship, which I have been awarded, will provide me with the opportunity to visit some of the world's most renowned and established Paediatric Palliative Care facilities and programs. This experience will not only allow me to extensively develop my existing knowledge but also to develop a network of contacts worldwide upon whom Bear Cottage can draw when seeking advice or reassurance.

During my Fellowship I will be travelling for nine weeks - visiting the UK, USA, Ireland, Canada and Romania. I will be investigating models of Recreation, Sibling and Bereavement Support in the context of Paediatric Palliative Care. Beginning in Edinburgh I will visit Rachel House, a facility very similar to Bear Cottage, and will have the opportunity to work with their Play Specialist, and to discuss the support services they provide which include specialist adolescent services.

In London I will visit Great Ormond Street, which hosts one of the world's first Paediatric Palliative Care Programs. I will also have the opportunity to participate in two educational forums at the Child Bereavement Trust, and to visit Richard House a children's hospice located in central London. Richard House provides a day respite centre in addition to their residential hospice program. They also provide at home support to children and their families - which I am eager to see in operation.

The highlight of my visit to the UK will be a week spent with the multidisciplinary teams from the three Acorn's children's hospices in the West Midlands. This area is one of immense cultural diversity and the hospices employ an Asian Liaison Officer and an African-Caribbean Development Worker, in addition each hospice has a physiotherapist and an activities co-ordinator. These hospices run programs such as Mother and Daughter Weekends. Acorns also run a comprehensive sibling support program which incorporates residential weekends, regional meetings, days out and the production of a sibling magazine. These hospices, like Richard House, also have outreach teams who go into families homes to offer psycho-social as well as practical support.

I will then have the great honour of spending a week at the Hospice Emmanuel program established in 1996 in Oredea Romania. This program is run with the assistance of British Nurse Kirsteen Cowling who will be my host during the visit. Rather than operating through a hospice facility this program offers at home support to patients and their families. Romanian hospitals have chronic bed shortages and it is estimated that 90 percent of oncology patients alone die at home. Kirsteen who joined the program in 1999 developed the paediatric palliative care component of this program.

In Canada I will spend a few days at Canuck Place, the only children's hospice in Canada and until 2004 the only paediatric hospice in North America. In particular I will spend time with the Bereavement support team at the hospice who have developed a comprehensive bereavement support program over their 10 years of operation. I will also have the opportunity to witness their state funded schoolroom, and their sand play therapy program.

Whilst in the USA I will visit The Children's Hospital of Philadelphia where I will work with Chris Brown, one of the world's most acclaimed Child Life Specialists, Chris also has an extensive history in working with bereavement support programs. Chris manages a multidisciplinary team of over fifty staff including Child Life Specialists, Art and Music Therapists.

In Seattle I hope to meet with Don Meyer founder of Sibshops, a program which supports siblings of children with disabilities. This program has been adopted world wide as an innovative and successful model of Sibling Support. I will also meet with the psychologists who form the Journey Program, a bereavement support program specifically aimed at the needs of children.

I will also visit a bereavement support program in Boston, and the first children's hospice in the USA, George Mark House in San Francisco.

My Fellowship concludes at the Dougy Centre Portland Oregon. The Dougy Centre is one of the world's premier institutes dealing with issues of childhood bereavement. While there I will complete their Summer Institute, an intensive week of training in childhood bereavement issues, and their effective management. While in Portland I will also take the opportunity to meet with Teresia Hazen the Horticultural Therapist for the Legacy Helathcare system, here I am hoping to learn innovative ways of utilising our new Multisensory Garden.

I am elated about the opportunities that my Churchill Fellowship will offer me to learn from the experience of world leaders in the field of Paediatric Palliative Care. Each day I have to pinch myself to believe that I have been awarded such an incredible opportunity to enhance myself professionally and personally. I would encourage anyone who has a passion about their work and could benefit from overseas experience to apply for a Churchill Fellowship - which not only provides an amazing opportunity to develop professional skills and knowledge but does this in a context of great encouragement and support from the Fellowship staff to past Fellows.

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