Press Release

Report urges more support for parents providing home-based hospice care for children

The Tánaiste and Minister for Health and Children, Mary Harney T.D, today (Tuesday, Sept 27th) launched the report “A Palliative Care Needs Assessment for Children” at the Irish Hospice Foundation offices. The Needs Assessment was a collaborative project undertaken jointly between the Department of Health and Children and the Irish Hospice Foundation. The report identifies the need to develop specialist paediatric palliative care posts to spearhead the establishment of services and education.

The report, which is based on the findings of a study conducted by a research team from University College Dublin, found that there was inequity in the provision of palliative care services to children with life-limiting conditions, with the services received dependent on diagnosis and where the child lived.

It has also called for more comprehensive data on children with life-limiting conditions. There is no system in place to collect accurate figures on the prevalence of children living with life-limiting conditions. This information would be vital for service planning at a local and national level.

The report also stated that while home was the preferred location of care, the services to support care at home were deemed inadequate by many families. A major source of stress for families was the difficulty encountered in accessing essential aids, appliances and equipment for their child. It was recognised that parents caring at home needed substantial support from professional health and social care networks.

The report called for more paediatric-trained staff to help parents provide home-based care and identified the need for a “key worker” for each child who would maintain ongoing contact with the child and family and liaise between family and service providers.

The Tánaiste welcomed the publication of the needs assessment and stated that “it represents the first step in the development of a nationwide cohesive and equitable palliative care service specifically for children and adolescents”. She added that the needs assessment “underlines the vital role the family plays in caring for terminally ill children” and that such families deserve full support. She added that the report was a good example of how statutory and voluntary partnerships can work together.

Mr Eugene Murray, CEO of the Irish Hospice Foundation, stated: “The home is the preferred place of care and for the death of a child. Being cared for at home diminishes feelings of fear, isolation and helplessness for children while it enables the parents to feel that they have done all they possibly could for their child. But the burden of care takes a heavy toll and parents are struggling to provide care with limited access to services and equipment and hidden financial costs. The Irish Hospice Foundation supports the report’s recommendation that home care support initiatives and community based care should be developed as a matter of priority.”

The Irish Hospice Foundation has financed the establishment of the Children’s Oncology Nursing Liaison Service at Our Lady’s Hospital for Sick Children in Crumlin and funded the first specialist palliative care nurse for children with the creation of a new post in Crumlin.

Note

The report was jointly funded by the Department of Health and Children and the Irish Hospice Foundation.

The research included postal questionnaires, focus groups, individual and family interviews and four consultation seminars. It involved:

Regional consultation seminars in Athlone, Dublin, Cork and Sligo;

Interviews with 34 families;

Survey of 35 paediatricians and paediatric units;

Survey of nine palliative care teams;

Survey of 34 voluntary organisations;

Semi structured interviews with seven health board policy planners and five hospice CEOs;

Survey completed by 241 GPs.