Article: Long-term ventilation in children

A good overview of long term ventilation (LTV) in the UK.  It covers the demographics, the different types of LTV, indications of why children require it, decision-making, the discharge process, home care packages, outcomes, ongoing dependence, transition and the future of LTV.

Brookes, I.  Long-term ventilation.  Paediatrics and Child Health, 29 (4) p 167 - 171.

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Article: Use of non-invasive ventilation in cerebral palsy

Children with cerebral palsy at the far end of the spectrum frequently suffer from sleep disturbance and sleep-disordered breathing, and non invasive ventilation (NIV) is increasingly being used.  This article reviews the current in the use of NIV in children, highlighting areas of uncertainty, and the balance of potential risks, challenges and benefits.

Grychtol, R. & Chan, E. 2018.  Use of non-invasive ventilation in cerebral palsy. Archive of Diseases in Childhood, 103 p 1170-1177.

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Article: Towards developing an ethical framework for decision making in long-term ventilation in children

This article discusses the various considerations to be made when deciding to initiate or continue long term ventilation (LTV).  It describes the process that should be followed and outlines the options available for the resolution of conflict around LTV decision making.   A consensus view is put forward as an ethical framework for decision making in children requiring LTV.

Ray, S. et al. 2018 Towards developing an ethical framework for decision making in long-term ventilation in children. BMJ Archives of Disease in Childhood 103 p 1080-1084.

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Article: The role of hospice in the transition from hospital to home for technology-dependent children - A qualitative study

This paper reports on the experiences of a children's hospice from the parents and hospice staff perspective in providing step-down care, assisting the transition from hospital to home.  The article was first published in 2017, and reports on part of a study carried out in 2013.  The multiple benefits of hospice step down care was evident.  Families had described their lives "on hold" while in hospital, where the hospice was considered a home-like environment where they were "living, not existing".  Professionals highlighted the role of hospices in empowering families.

Price, J 2018 The role of hospice in the transition from hospital to home for technology-dependent children - A qualitative study. Journal of Clinical Nursing 2018 27 p 396 - 406

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Article: Mental health and well-being of parent caring for a ventilator-dependent child

This review of the literature was to determine the social and emotional effects of parenting a child on long term ventilation who is cared for at home.  Their findings showed parents' experience a lack of formal and informal support, financial difficulties, limited access to respite care and feelings of social isolation.  The article discusses the role healthcare staff have in improving parents' coping skills and resilience.

Lee. J and Lynn, F 2017. Mental health and well-being of parents caring for a ventilator-dependent child.  Nursing Children and Young People, 29 (5) p 33-40

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