Abstract
INTRODUCTION
Advances in medical science have enabled many children and young people to survive with the aid of medical technologies. One key technology is long-term ventilation (LTV), defined as ventilatory support lasting at least three months and includes invasive and non-invasive options [1]. LTV can be intended as a bridge therapy to a state where the technology is no longer required, such as to support premature babies with respiratory distress syndrome. Alternatively, LTV can be regarded as lifelong treatment to prevent respiratory insufficiency for people with conditions such as Duchenne Muscular Dystrophy [2]. Regardless of the pathway, whether to initiate LTV is a complex, individual and dynamic decision often made on a case-by-case basis reflective of the heterogeneous nature of these populations [3, 4].
Shared decision-making (SDM) exists as a principle in the United Kingdom (UK) National Health Service (NHS) Constitution that states, ‘Patients, with their families and carers, where appropriate, will be involved and consulted on all decisions about their care and treatment’. [5] Enacting SDM in practice relies firstly on patients and their families receiving the necessary information about the risks and benefits associated with the available treatment options. More so, patients and their families should be given the opportunity to express their preferences and where appropriate, deliberate with healthcare professionals to determine the best treatment plan [6].
The factors that surround a decision to initiate LTV are complex and particularly warrant the existence of SDM principles. For example, there may be considerable uncertainty about the future prognosis of the child. Likewise, the clinical circumstances of children who require LTV means caregivers often must advocate for their child in decisions made about their care. Caregivers must do this while likely contending with their own anxieties and concerns, in environments that are often highly stressful and emotionally draining [7-9]. As such, ensuring caregivers are appropriately informed and supported to be a participant in decisions made is critical to reaching shared agreement on the most appropriate treatment plan for their child.
The value of SDM principles in decisions about LTV for children is formerly recognised in practice guidelines[10]. These guidelines allude to the value of practices such as consistent, open, and empathetic dialogue between all parties. Also highlighted is the continued assessment of patient and family understanding of illness and treatment options . Likewise, service specifications for paediatric long-term ventilation published by NHS England state the child and family must be provided the opportunity to discuss LTV with specialists and be given ‘condition specific’ information[11].
Despite the publication of such guidelines, there is minimal empirical evidence or understanding of the application of SDM in the practice of LTV initiation. This is significant because the number of children and young people (0-24 years) on LTV is increasing rapidly, with an estimated 2382 in 2019 in the UK [12]. Consequently, there is a growing need to substantiate existing opinion-based guidance, with empirical evidence and understanding. To address this gap, in this systematic review and qualitative synthesis, we aim to clarify what SDM constitutes in relation to LTV initiation by exploring how children, young people, caregivers, and healthcare professionals practically experience SDM in LTV initiation.