Intl Conference on Children’s Palliative Care

28 Apr
2016

LauraLynn was proud to collaborate with partner organisations in hosting the 2nd Intl Conference on Children’s Palliative Care.

This conference was a celebration of the progress made in palliative care for children over the last 10 years and an acknowledgement that there is lot more work to do. Almost 150 people attended the event from across Ireland, Romania, Norway, Canada and the UK.

Key Messages

  • The essence of palliative care is the “human connection, international expert Professor Stephen Liben told delegates at the second international children’s palliative care conference.  Professor Liben said communication and relationships are the essence of children’s palliative care. He stressed the importance of nurses in the provision of palliative care for children.
  • A nurse’s skill in building relationships and communication with children is crucial” Professor Liben said. He said involving siblings in the care of a child with life limiting condition or palliative diagnosis had been shown to help siblings in the long term. “Siblings involved in the care of a sick child do better when there brother or sister die,” he said. Professor Stephen Liben who is Director on the Paediatric Palliative Care Programme at Montreal Children’s Hospice in Canada told delegates -mostly clinicians from paediatricians, doctors, nurses and allied care professionals: “You are the difference you make”.
  • Emily Logan, Chief Commissioner of the Irish Human Rights and Equality Commission who opened the conference said: “All children have a right to health and thus to palliative care.”
  • Dr Mary Devins who is Ireland’s only consultant paediatrician in palliative care said “palliative care is a philosophy of care”.  Dr Devins said palliative care does not always need a building and “care can happen anywhere”. She stressed that palliative care is not ”no care” and earlier involvement of the palliative care team is vital for families.
  • National lead for palliative care in the Health Service Executive, Sheilagh Reaper-Reynolds outlined how policy and implementation is nurturing the growth of children’s palliative care in its own right. She said “great progress has been made”.
  • Professor Charles Normand – Edward Kennedy Chair in Health Policy and Management at Trinity College Dublin – argued that it can make economic sense for palliative care for children to be provided in the child’s own home.  Professor Normand said: “Studies have shown that care in hospital tends to be much more expensive for these children and in most cases is less suitable. Shifting the balance towards support for people to remain at home achieves more at lower cost. It is hard to argue for doing less for more. He said we need to demonstrate that are not misusing the resources that we already have. He revealed the financial toll and life-limiting condition can have on a family. A third of a family’s income is spent on a sick child in the home with the cost even higher if the child is in hospital.”
  • Michelle Hartnett who is a play specialist at LauraLynn Children’s Hospice outlined the importance of play in helping bereaved children to find a “new normal” after the death of a sibling.
  • European Association of Palliative Care Chief Executive Officer Dr Julie Ling highlighted the factors which may push parents to opt for palliative care for their children in their own homes. Dr Ling said: “However whilst respite care at home is seen as the preference of most parents there are also many factors which make this challenging and these will be discussed.”
  • Clinical Nurse Specialist in Paediatric Palliative Care, Our Lady’s Children’s Hospital, Dublin, Imelda Hurley outlined the changing referral patterns to a children’s palliative care service after the appointment of a consultant paediatric with a special interest in palliative care to the hospital.
  • Claire Quinn,Head of Research, LauraLynn Children’s Hospice and Lecturer at NUI Galway outlined the importance of further research into paediatric palliative care and prioritizing what areas of research are targeted. She said including the voice of the child in this research is crucial. 
  • Ann Marie Jones, Head Medical Social Worker at Temple Street Children’s Hospital , Dublin presented the Childhood Bereavement Care Pyramid. The pyramid is a guide for professionals and concerned adults in identifying and responding to the needs of children and young people who have experienced a loss. She said: “Children need attention and supports to learn to cope and deal with changes death brings.”
  • Mother of four Tina Priestley from Naas, Co Kildare outlined how she “lived a lifetime” with her son Bobby who died when he was thirteen months old. Bobby was born in 2008 with the chromosomal disorder Tetrasomy 9P. During his short life the family received welcome support from the Jack & Jill Foundation and various partners in children’s palliative care. Her advice to other parents who are caring for children with a life limiting illness is to “grab every bit of help offered.”
  • Dr Daniel Nuzum – Healthcare Chaplain at Cork University Maternity Hospital presented his research on the spiritual impact of a life-limiting diagnosis given to parents during pregnancy. His study revealed that the death of a baby challenged the spiritual beliefs of expectant parents and “raised deep existential questions” as they commenced a perinatal palliative care journey. “Parents felt that their spiritual needs were not adequately met during pregnancy and this study highlights the need to identify and attend to the spiritual needs of parents in perinatal palliative care,” Dr Nuzum said. He told delegates: “It’s never too late to start that one chance to get it right”
  • Professor Mary King from the Department of Paediatrics at University College Dublin gave a practical presentation on symptom management of a child with complex neurological issues.
  • Senior psychologist at LauraLynn Children’s Hospice Dr Aidan McKiernan outlined the importance of respite for family functioning and parental coping in paediatric palliative care.
  • LauraLynn Children’s Hospice’s Claire Quinn demonstrated a new nursing skills assessment tool called the ‘PaedPAL TASK’ to assist professional learning and development in children’s palliative care.
  • Delegates were welcomed to share in the first screening of a new educational learning resource “Learn from Me” produced by Claire Quinn and consultant paediatrician Dr Joanne Balfe of LauraLynn Children’s Hospice.  This resource features the voices of many parents and family members who wish to let healthcare professionals know what they really needed to know and provides a rare insight into experiences with healthcare professionals .
  • Dr Michael McDermott, a consultant in paediatric pathology at Our Lady’s Children’s Hospital, Dublin spoke about the processes and complexity involved in the “privilege” of caring for a child after death.  Dr Michael Capra, consultant in paediatric oncology at Our Lady’s Children’s Hospital, Dublin gave a talk on “Oncology and Palliative Care – Understanding Each Other.” He said the “hope trajectory crucial as as well as honest communications.”
  • Sarah Meaney, research officer, National Perinatal Epidemiology Centre, University College Cork spoke about perinatal palliative care when one twin dies. She said there is a need to acknowledge the loss of a twin whilst caring for the surviving twin.
  • Senior musical therapist Dee Gray and senior occupational therapist Anna Brown, LauraLynn Children’s Hospice outlined the role music can play in children’s palliative care.
  • Dr Des McMahon, specialist registrar in Palliative Medicine, St Luke’s Hospital Dublin and Our lady’s Children’s Hospital, Dublin presented a study of antenatal and neonatal referrals to an Irish paediatric Specialist Palliative Care Conference.

The conference held on Friday and Saturday was a collaboration between eight partner organisations;The Irish Association for Palliative Care, The Irish Hospice Foundation, Mercy University Hospital, NUI Galway, Our Lady’s Children’s Hospital Crumlin, The Jack and Jill Children’s Foundation and LauraLynn Ireland’s Children’s Hospice.

 

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