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The big study for life-limited children and their families: How well are the palliative care needs of children with life-limiting conditions and their families met by services in the West Midlands?

The big study for life-limited children and their families: How well are the palliative care needs of children with life-limiting conditions and their families met by services in the West Midlands?

Hunt, Anne, Coad, Jane, West, Elizabeth, Hex, Nick and Staniszewska, Sophie (2012) The big study for life-limited children and their families: How well are the palliative care needs of children with life-limiting conditions and their families met by services in the West Midlands? Project Report. Together for Short Lives, Bristol, UK.

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Item Type: Monograph (Project Report)
Additional Information: [1] The Big Study for Life-limited Children and their Families – How well are the palliative care needs of children with life-limiting conditions and their families met by services in the West Midlands? Also, known as The Big Study for Better Care for Children and Families. [2] The Big Study was funded by the Big Lottery Research Programme and involved collaboration between Together for Short Lives and five academic institutions. It began in Autumn 2010 and concluded in the Summer of 2012. Each academic partner pursued a different strand of enquiry to research how well the palliative care needs of children with life-limiting conditions and their families were being met by services in the West Midlands. Dr Anne Hunt from the University of Central Lancashire led a team to develop an understanding of the demographic and geographical distribution of children with life-limiting conditions across the West Midlands. Professor Jane Coad from Coventry University led a team to identify the met and unmet needs of children with life-limiting conditions and their families in the area. Professor Elizabeth West from the University of Greenwich led an evaluation of the professional network operating across the region - looking at the co-ordination, co-operation and collaboration in the West Midlands Paediatric Palliative Care Network (WMPPCN). Nick Hex from York Health Economics Consortium led the economic evaluation of service delivery. This work enabled the team to identify the financial burden for families with children with life-limiting conditions, as well as identifying the costs to services for providing care and support to this cohort of children and young people. Sophie Staniszewska from the University of Warwick led the work on patient and public involvement throughout the study and her team’s work with a parent advisory group has helped steer the study and provided an insight to the context and processes of effective involvement. [2] Strand 3 report, in Part Two (pp.132-157) of the Big Study was authored by the University of Greenwich research team, - namely, Elizabeth West (lead), Val Chandler, Anna Wik, Helen Magee, David Barron (see also http://gala.gre.ac.uk/9441).
Uncontrolled Keywords: palliative care, children, care needs, life-limiting conditions, family, West Midlands
Subjects: R Medicine > RT Nursing
Pre-2014 Departments: School of Health & Social Care
Related URLs:
Last Modified: 14 Oct 2016 09:23
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
URI: http://gala.gre.ac.uk/id/eprint/9442

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