The psychological burden of restricted parental visiting in paediatric intensive care

Abstract

A recently published study in this journal found that more flexible visiting arrangements reduced the heart rate and blood pressure of adult intensive care patients, in addition to improving patient satisfaction.1 Although this article does not discuss visiting arrangements in relation to the Coronavirus (COVID-19) pandemic, it does acknowledge the positive effects that visiting has on physiological parameters. There have been some recent publications observing the collateral damage this pandemic has caused on children's education, social care, and health services.2, 3 This commentary refers to collateral damage in terms of visiting restrictions on children in paediatric intensive care units (PICUs). A pertinent consideration is the psychological burden of separation on children, young people, and their families during this time. Separation of a child and his or her parents has previously been reported to cause significant stress.4 In the United Kingdom, parental visitation is usually not restricted in PICUs, and parents can visit their child any time of the day or night. Open parental visiting is a key aspect of family-centred care and is something valued by children and families.5 Siblings, extended family members, and friends may also be allowed to visit during the day. In most UK PICUs, to ensure a safe environment, the number of visitors by the child's bed is often restricted to two, except in specific circumstances such as end-of-life care. Despite this, people close to the child are encouraged to be present as this socialisation is valued as important for the child and family. In paediatrics, we take pride in our ability to work closely with families to provide individualised and child-focused care, even in the PICU.6 As children's nurses, we recognise children within the context of their family and provide support for families while providing medical and nursing care for their children. We empower parents to take an active role in the child's personal care and provide psychological support for the families to reduce their stress; this constitutes a family-centred care approach.7 There is evidence that reducing parental stress can reduce the adverse psychological effects on both children and their parents.8 Spending time with their family enables a child or young person to feel reassured, safe, and orientated.9 To have an advocate present who understands their cultural and spiritual needs while providing emotional support is an essential part of their care. This is vital when the PICU environment is foreign and frightening, and the care, albeit essential, is often invasive, intrusive, and disruptive. During the COVID-19 pandemic in the United Kingdom, the Department of Health introduced new guidance on restrictions for visiting patients in hospital as a matter of public health and safety.10 During the early stages of this pandemic, it became clear that this was an ever-evolving situation with constant change and flexibility required in all areas of planning service delivery. An issue that became apparent was that children who are positive for COVID-19 do not have the same health care trajectory as their adult counterparts.11 They were also less likely to be symptomatic and require hospitalisation, even considering our developing understanding of paediatric inflammatory multisystem syndrome temporally associated with COVID-19 (PIMS-TS).12, 13 Despite NHS England guidance stating that visiting should be restricted, with exceptions such as the parents of paediatric patients,10 most PICUs in the United Kingdom have restricted visiting to one parent only. Some units enforced this by only allowing one consistent parent through the entire hospitalisation, while others have allowed a second parent to take over after a set period. Some UK PICUs had the capacity to swab parents for COVID-19, and if they were negative, a parent could stay at the child's bedside to sleep, eat, and use the en suite toilet and washing facilities; others who were positive had to return home for seven days or until they had a negative COVID-19 swab. Those families who had other children suffered even more difficulties, especially around childcare as extended family or friends were often reluctant to help. For single-parent families, this was also a problem as they could not have an appointed a friend or relative for support and therefore experienced their child's PICU stay alone. Existing economic hardships were heightened as some parents were unsure of job security. Others were furloughed, and some had to rely on universal credit (social security payments), and this added to their stress and anxiety in the PICU. The one “designated visiting parent” had to process his or her child's prognosis and treatment, make life-changing decisions, and then relay this information back to other family members, on top of his or her other concerns. In some PICUs, before the pandemic, a designated family liaison team would be available to support the family through these difficulties; however, these nurses were often redeployed into the bedside nursing workforce. Religious services and clinical psychology services were also either not available or reduced to video calls. A recent Paediatric Intensive Care Audit Network (PICANet) report identified only 71 children who were admitted to PICU who were COVID-19 positive between 15 March and 13 June 2020.14 This highlights the stark difference between paediatric and adult COVID-19 positive patients requiring intensive care. Data from the United Kingdom,14 China,11 and the United States15 confirm that the incidence of COVID-19 as a cause of PICU admission is much lower than that in adults. However, even though the physical impact of COVID-19 on children was minimal compared with that of adults, the collateral damage caused by separation and severely restricted visitation of children in PICUs needs urgent consideration. This is increasingly crucial as we approach the winter season, where paediatric respiratory illnesses cause high admissions on top of a potential second wave of COVID-19 in the United Kingdom. The absence of relatives in adult intensive care has been discussed in the literature in relation to COVID-19,16, 17 but the impact of the partial absence of close family members/parents in the PICU has not yet been investigated in primary research. Longitudinal studies are required to observe the longer-term effects of this separation on both children and their families. Psychological support for children, young people, and their parents may not have been operationalised as these support services were overwhelmed during the pandemic.2 In addition, long-term support plans for families need to be developed by PICU family liaison teams and psychologists to try to ameliorate the impact of this experience. Moving forward into the winter months and with the threat of a second wave of COVID-19, we call on those involved in decision-making to consider the detrimental impact of restricted visiting on children and their families. In the absence of any research into the effects of parental separation during the pandemic, we need to heed previous research focusing on the detriment caused by parent separation. We need to utilise our own experiences and judgement to support the family through their PICU journey. This includes efforts to minimise the long-term psychological damage to the child and his or her parents or siblings. Given the contrasting paediatric data regarding mortality from COVID-19, we need to question whether the strict parent visitation restrictions are still needed in PICU. Can we allow family members to support each other by allowing more contact with their sick child while still reducing the risk of COVID-19? Furthermore, without research on the impact these restrictions have had, it is difficult to know how to plan for a potential second wave or how to provide long-term support for these families. Therefore, until this evidence is available, it is imperative to start these conversations within our own institutions now.

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