Caring for Life: The Palliative and Supportive Care Needs of Children and Families in Western Australia

A/Professor Leanne Monterosso
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Supportive care services for children in WA are under developed and there is a recognised need to develop evidence-based paediatric palliative care services.

Aims: To better understand the needs of children suffering from life threatening conditions and their families and identify the extent of service provision currently available to these families in WA.

Method: Two-phase study (quantitative and qualitative methods).

Phase I - 134 parent interviews to determine: the demographic profile, children’s abilities to perform essential daily functional skills, the needs of parents and siblings (including education and support needs), service and resource utilisation in hospital and community settings, and the level of anxiety and depression in parents.

Phase 2 - interviews with 38 families and 20 service providers to explore: perceptions of palliative and supportive care, the need for family respite, potential use of a children’s hospice facility, and issues related to care of a sick child including the financial and emotional impact.

Key findings: 1. The majority of families prefer children to remain at home for care whenever possible. 2. Families are affected physically, emotionally, mentally and financially. 3. Parents require ongoing practical and multidisciplinary support throughout their child’s illness (including home visits for palliative children for management of pain and nutrition). 4. Need for Increased levels of in-home and residential respite. 5. Parents require clear, straightforward information about their child’s condition. 6. Current transition between care settings was perceived to be complex and burdensome. 7. Need for a case management approach to facilitate transition between inpatient facilities, home and residential or out-of-home respite care settings.

Conclusion: Empirical findings provide specific guidelines for the broad delivery of palliative and supportive care for children. Appropriate infrastructure is required to facilitate provision of quality and effective supportive and palliative through partnerships between sick children, families and health professionals.

Keywords: Paediatric, Palliative Care, Supportive Care, Families, Needs, Children
Stream: Research Methodologies, Quantitative and Qualitative Methods
Presentation Type: Paper Presentation in English
Paper: Caring for Life

A/Professor Leanne Monterosso

Associate Professor Paediatric Healthcare, School of Nursing, Midwifery and Postgraduate Medicine, Edith Cowan Univeristy/Princess Margaret Hospital for Children
Perth, Western Australia, Australia

Leanne is a registered nurse, midwife and neonatal intensive care nurse. Leanne is currently leading a number of studies in paediatric cancer and palliative care, neonatology. She is also involved in neonatal and midwifery research projects. Leanne comleted a nursing postdoctoral fellow in 2001 that focused on paediatric cancer and palliative care. In 2002 Leanne was appointed as a Senior Research Fellow (paediatric oncology) and she continued in this position until October 2005. Leanne has received numerous research funding grants, both national and international. She is also a Board member for the Children’s Hospice Association in Perth.

Leanne commenced as Associate Professor of Paediatric Healthcare in 2005. She has an adjunct appointment at Princess Margaret Hospital for Children which provides a clinical base for her research. Leanne's areas of research interest include: general paediatrics, paediatric oncology, paediatric palliative care, neonatology, midwifery, critical care, the impact of psychosocial issues on health, bioethics, quantitative methods, randomised controlled trials, and beginning qualitative methodology, collaborative and multidisciplinary research. As well, Leanne supervises Honours, Masters and PhD students. Leanne has an interest in postgraduate education and teaches in the postgraduate program, focusing on quantitative research methods. Leanne is also the Postgraduate Coordinator – Nursing and is responsible for the development, delivery and review of postgraduate courses.

Ref: I06P0072