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WP6 - Clinical and therapeutic CDG research
WG CDG Patient reported Outcomes (PROMs)
Working Group Leader (WGL): Professor Liz Forbat (Faculty of Health Sciences at Australian Catholic University in 2015, as professor of palliative care).
Under the scope of this WG, our work will be focused on better understand CDG symptoms, the family symptom experience and the relational impacts of ill health.
Under the scope of this WG, our work will be focused on better understand CDG symptoms, the family symptom experience and the relational impacts of ill health.
Results obtained so far from this research project:
- Under the scope of a master degree program in health psychology, a student will start a master's thesis on September 2016. This involves conducting research for the pilot study conducted by Dr Forbat.
Any student, research groups, researchers, clinicians, patient organisations or other stakeholders who would like to become more involved within this project, are most welcome to get in touch to discuss possible future opportunities and collaborations. Fulfill the contact form available below:
Future opportunities and collaborations:
About Professor Liz Forbat
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Biography:
Dr. Forbat received her Ph.D. in the psychology of care relationships from the Open University, UK, in 2001. After completion of her doctorate she worked as a post-doc at the Open University for two years and then the University of Edinburgh for three years. Dr. Forbat then served as senior research fellow at the University of Stirling for four years, before being appointed as co-director of the Cancer Care Research Centre at Stirling. In Dr. Forbat joined the Faculty of Health Sciences at Australian Catholic University in 2015, as professor of palliative care. Her interests as a research psychologist and family psychotherapist are focused on: (i) care relationships, (ii) care pathways and (iii) quality clinical care. In particular her team are currently working on understanding the outcomes of family meetings in palliative care, conflict between clinicians and families, and avoidable presentations to emergency departments. Her previous work in the field of pediatric palliative care has focused on rare life-limiting conditions, identifying research priorities, and documenting symptom profiles and impact on families. She aims/hopes to contribute for CDG lives by enhancing understandings of the impact of illness on psychosocial wellbeing. Dr. Forbat currently serves on the Editorial Board of the British Journal of Learning Disabilities and The Journal of Family Therapy. She is a member of the Australian Capital Territory palliative care clinical network.
List of publications in the field of CDG:
- Malcolm, C,. Adams, S,. Anderson, G,. Gibson, F,. Forbat, L. (2014) A relational understanding of sibling experiences of children with rare life-limiting conditions: findings from a qualitative study. Journal of Child Health Care. 18(3): 230-40.
- Malcolm C; Hain R; Gibson F; Adams S; Anderson G; Forbat L (2012) Challenging symptoms in children with rare life-limiting conditions: Findings from a prospective diary and interview study with families. Acta Paediatrica. 101(9):985-92.
- Malcolm, C,. Forbat, L,. Anderson, G,. Gibson, F,. Hain, R. (2011) Challenging symptom profiles of life-limiting conditions in children: A survey of care professionals and families. Palliative Medicine. 25(4): 374-381.
- Malcolm, C, Knighting, K,. Forbat, L. and Kearney, N (2009) Future research topics for children’s hospice care as identified and prioritised by key stakeholders: A Delphi study. Palliative Medicine. 23(5): 398–405.
Support our research, advocacy, awareness and education efforts now!
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Our work is publicly available to help the CDG community and related rare disease communities. Importantly, we do not receive government funding. We rely solely on donations in order to continue our projects. Consider to make a donation using Paypal, debit or credit card or bank transfer. |
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