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Database of children with life-limiting conditions needed

Author: Petrina Vousden
08 March 2017
  • Claire Quinn, NUI Galway lecturer

Experts are calling for a database of children with life-limiting conditions living in Ireland to be developed as a top priority. The need for accurate data on the prevalence of children with life-limiting conditions was made in new research published in the International Journal of Palliative Nursing.

Dozens of health professionals working in Ireland were surveyed to identify areas that should be prioritised in future research in paediatric palliative care.

Getting accurate data on the number of children living with life limiting conditions to meet their needs was among the top priorities listed.

The study’s lead author Claire Quinn said the need for accurate data on the prevalence of children with life limiting conditions echoes findings in several key national documents and national policy.

Claire Quinn, lecturer in the School of Nursing and Midwifery and NUI Galway said a recent study suggests that the prevalence of children living with life-limiting conditions is much higher than initially estimated.

“Internationally, no country has a national database, due to practical, ethical and financial challenges,” Ms Quinn said.

Paediatric palliative care (PPC) is an emerging and highly specialised field of healthcare that focused on improving the quality of life of children who are living with a life-limiting condition and of their families.

Ms Quinn said: “While is does share certain commonalities with adult palliative care, paediatric palliative care is considered a unique speciality.”

PPC views the child and family as a unit of care and encompassed medical treatment symptom management, respite for families, emotional and spiritual support as well as end-of-life care and bereavement support where needed.

“However the degree to which these are available to children and families depends largely on the resources available to health and social care services. Unlike palliative care, children do not follow predictable disease trajectories,” Ms Quinn said.

She added: While some children and families may only access PPC services for a short time – for example at the end of life – advances in technology have meant that many children are now living longer and may access PCC services over many months, or in some cases years.”

The preferred location of PPC for families is the family home.

The newly published study identified a need for links between maternity and paediatric palliative services as a research priority.

The need for effective clinical government for children with life limiting conditions was identified as a research priority by the health professionals surveyed.

Ms Quinn said: “This echoes calls for clear and established protocols and governance frameworks outlined in the national needs assessment.

“Of particular note from this study is the articulation of a need for these governance structures to develop in a way that does not introduce additional challenges for families managing medical care requirements and service provision in the home.”

Ms Quinn said a lack of coordination between paediatric palliative care service providers has been identified as a challenge for the development of support services in Ireland.

“Participants in this new study identified a need for a national strategy to co-ordinate serice provider care,” Ms Quinn said.

She said while the findings are unique to Ireland valuable lessons from the research may be learned by those in other countries where similarities in population and geography exist like Scotland.

The new research is entitled: Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study.

The authors are Claire Quinn, Sandra McCarthy, Dr Mary Devins, Dr Maeve O’Reilly, Dr Marie Twomey and Dr Julie Ling.

Lead author Claire Quinn is lecturer and programme director at NUI Galway School of Nursing and Midwifery.

See more articles in Research

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