Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit

The involvement of patients and the public in the development, implementation and evaluation of health care services and research is recognized to have tangible benefits in relation to effectiveness and credibility. However, despite >96% of children and young people surviving critical illness or...

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Main Authors: Manning, Joseph C., Hemingway, Pippa, Redsell, Sarah A.
Format: Article
Language:English
Published: Wiley 2018
Subjects:
Online Access:https://eprints.nottingham.ac.uk/55076/
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author Manning, Joseph C.
Hemingway, Pippa
Redsell, Sarah A.
author_facet Manning, Joseph C.
Hemingway, Pippa
Redsell, Sarah A.
author_sort Manning, Joseph C.
building Nottingham Research Data Repository
collection Online Access
description The involvement of patients and the public in the development, implementation and evaluation of health care services and research is recognized to have tangible benefits in relation to effectiveness and credibility. However, despite >96% of children and young people surviving critical illness or injury, there is a paucity of published reports demonstrating their contribution to informing the priorities for aftercare services and outcomes research. We aimed to identify the service and research priorities for Paediatric Intensive Care Unit survivors with children and young people, their families and other stakeholders. We conducted a face‐to‐face, multiple‐stakeholder consultation event, held in the Midlands (UK), to provide opportunities for experiences, views and priorities to be elicited. Data were gathered using write/draw and tell and focus group approaches. An inductive content analytical approach was used to categorize and conceptualize feedback. A total of 26 individuals attended the consultation exercise, including children and young people who were critical care survivors; their siblings; parents and carers; health professionals; academics; commissioners; and service managers. Consultation findings indicated that future services, interventions and research must be holistic and family‐centred. Children and young people advisors reported priorities that focused on longer‐term outcomes, whereas adult advisors identified priorities that mapped against the pathways of care. Specific priorities included developing and testing interventions that address unmet communication and information needs. Furthermore, initiatives to optimize the lives and longer‐term functional and psycho‐social outcomes of Paediatric Intensive Care Unit survivors were identified. This consultation exercise provides further evidence of the value of meaningful patient and public involvement in identifying the priorities for research and services for Paediatric Intensive Care Unit survivors and illuminates differences in proposed priorities between children, young people and adult advisors.
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spelling nottingham-550762018-09-21T09:55:17Z https://eprints.nottingham.ac.uk/55076/ Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit Manning, Joseph C. Hemingway, Pippa Redsell, Sarah A. The involvement of patients and the public in the development, implementation and evaluation of health care services and research is recognized to have tangible benefits in relation to effectiveness and credibility. However, despite >96% of children and young people surviving critical illness or injury, there is a paucity of published reports demonstrating their contribution to informing the priorities for aftercare services and outcomes research. We aimed to identify the service and research priorities for Paediatric Intensive Care Unit survivors with children and young people, their families and other stakeholders. We conducted a face‐to‐face, multiple‐stakeholder consultation event, held in the Midlands (UK), to provide opportunities for experiences, views and priorities to be elicited. Data were gathered using write/draw and tell and focus group approaches. An inductive content analytical approach was used to categorize and conceptualize feedback. A total of 26 individuals attended the consultation exercise, including children and young people who were critical care survivors; their siblings; parents and carers; health professionals; academics; commissioners; and service managers. Consultation findings indicated that future services, interventions and research must be holistic and family‐centred. Children and young people advisors reported priorities that focused on longer‐term outcomes, whereas adult advisors identified priorities that mapped against the pathways of care. Specific priorities included developing and testing interventions that address unmet communication and information needs. Furthermore, initiatives to optimize the lives and longer‐term functional and psycho‐social outcomes of Paediatric Intensive Care Unit survivors were identified. This consultation exercise provides further evidence of the value of meaningful patient and public involvement in identifying the priorities for research and services for Paediatric Intensive Care Unit survivors and illuminates differences in proposed priorities between children, young people and adult advisors. Wiley 2018-03-31 Article PeerReviewed application/pdf en https://eprints.nottingham.ac.uk/55076/1/2017%20-%20Manning%20et%20al%202017%20-%20Survived%20so%20what%20-%20NICC.pdf Manning, Joseph C., Hemingway, Pippa and Redsell, Sarah A. (2018) Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit. Nursing in Critical Care, 23 (2). pp. 68-74. ISSN 1478-5153 Paediatric intensive/critical care; Paediatrics; Research; Research methodology; Short- and long-term patient outcome from intensive care http://dx.doi.org/10.1111/nicc.12298 doi:10.1111/nicc.12298 doi:10.1111/nicc.12298
spellingShingle Paediatric intensive/critical care; Paediatrics; Research; Research methodology; Short- and long-term patient outcome from intensive care
Manning, Joseph C.
Hemingway, Pippa
Redsell, Sarah A.
Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit
title Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit
title_full Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit
title_fullStr Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit
title_full_unstemmed Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit
title_short Survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit
title_sort survived so what?: identifying priorities for research with children and families post-paediatric intensive care unit
topic Paediatric intensive/critical care; Paediatrics; Research; Research methodology; Short- and long-term patient outcome from intensive care
url https://eprints.nottingham.ac.uk/55076/
https://eprints.nottingham.ac.uk/55076/
https://eprints.nottingham.ac.uk/55076/