Billy is a 2-year-old little boy with toxic shock secondary to chicken pox. He has been very unwell in his local hospital and a referral has been made to the PCC transport service for on-going advice and transfer to a level 3 PCCU. He has been intubated and ventilated, volume (fluid) resuscitated and commenced on vasoactive drugs to support his BP.

• What do you think Billy, his family and the transport team will require on arrival to the PCCU?

Answer: PCCU transfers depend on co-ordinated and seamless teamwork to provide the best outcomes for children and their families. Collaboration and co-operation between both the transferring and receiving team is key. Prior to transfer, the bed space must be prepared and checked for safety and appropriateness. Table 31.1 in this chapter describes the essential equipment for Billy’s admission. PICS (2015) provides guidelines for these. Additional preparation is also essential for a smooth transfer:

• Prescribed pre-prepared fluid and drugs
• Cot/bed with pressure relieving mattress
• Equipment to move Billy from transport trolley onto cot, i.e.  PAT slide, slide sheets and appropriate personnel
• Weighing equipment if weight not accurate and condition allows
• Cooling mattress/cooling devices if hyperpyrexial

Parents must be cared for during and following the transfer process:

• Update on their child’s condition and introductions to the PCC team caring for Billy
• PCC orientation
  
  • Where they will be resident
  • Rest area and refreshments. How to access other essentials such as toiletries
• Written information
  
  • Contact numbers
  • Welcome information
  • Visitation (or other locally relevant) policy
• Access to a telephone, phone charger

Teamwork is very important during this time. Both the transferring and receiving team perform specific roles to facilitate a smooth, co-ordinated, safe and uneventful transfer.

• Awaiting PCC team to hand over Billy
• Assistance in settling Billy into PCC, e.g. moving from transport equipment onto PCC equipment and pumps
• Refreshments and access to a rest area.

Reference

PICS (2015) Standards for the Care of Critically Ill Children, 5th edition, version 2. London: Paediatric Intensive Care Society.

When you look after a child with ECG monitoring, you must recognise the normal ECG pattern and what it means. To support this learning, look up the normal PQRST ECG pattern and explain its link to cardiac contraction (systole) and relaxation (diastole). Describe in simple terms what the PR interval and ST segment mean. Watch this video on the website to enhance your understanding:  www.youtube.com/watch?v=RYZ4daFwMa8

Answer: The sino-atrial node (SA), the natural pacemaker of the heart, generates impulses known as the P wave. This is the first wave seen on the ECG. The P wave causes depolarisation of the atria and causes atrial contraction (systole).  Following this, the QRS complex is generated on the ECG as electrical impulses travel to the ventricles to depolarise this chamber. In the normal ECG, the QRS complex is always preceded by the P wave and followed by the T wave. The QRS complex denotes ventricular contraction (systole). The T wave is ventricular repolarisation (diastole), i.e. the relaxation phase of the heart (diastole).

The PR interval is the time delay that occurs as all the electrical impulses from the right and left atria arrive and are collected at the atrio-ventricular (AV) node.  Whilst this is happening, there is a pause, and this is known as the PR interval. The PR interval follows the P wave in the normal ECG.

The ST segment is associated with ventricular depolarisation and provides important information about the state of the ventricles. For instance, diffuse ST segment elevation occurs in pericardial tamponade which can be a complication of some cardiac surgery. ST segment depression may be observed in cardiac ischaemia or strain, for example when there is myocardial dysfunction for instance in sepsis.

Reflect on a time when you were either in a noisy, chaotic and confusing environment or even in your first placement when you were unsure of what to expect. How did you feel?  This experience will be significantly worse for critically ill children and their families who have little control over their own environment on the PCCU.

Answer: Unfamiliar noises such as alarms in the PCCU are threatening situations. This is not dissimilar to other threatening situations you may have experienced and gives you a sense of how the children and their families cope when alarms are not managed or unattended to promptly. Reflecting on a situation which caused you anxiety may help you to appreciate how the children and families may feel during this time. Your answer may include some of the following. You may have experienced what is known as the General Adaptation Syndrome (GAS) (Selye, 1950). The GAS ranges from alarm and a stage of resistance to the threat which culminates in exhaustion if the situation is not resolved. Psychological security is threatened, and you may have experienced physiological manifestations of fear and anxiety e.g. palpitations, sweating, dilatation of the pupils, shaking, feeling loss of control – these are all manifestations of the sympathetic activity. You may also have experienced the feeling of helplessness and hopelessness and/or of wanting to confront and fight the threat or flee from it, i.e. ‘fight or flight’ syndrome. If you have had previous experience of similar situations, you may have felt less threatened and able to take some control over the situation. You may also have sought information, reassurance, assistance and help to help you understand the threatening situation and ways in which to deal with it. The children and families who are exposed to alarms and sounds that are unfamiliar or threatening in nature will react in a similar but more amplified manner as they try to take control of the situation. This may be perceived as not coping, non-compliance or lacking in co-operation by unwary staff. Reassurance, giving information, providing comfort, setting appropriate alarms and attending to these in a timely manner are key interventions.

Reference

Selve,. H. (1950) ‘Stress and the General Adaptation Syndrome’, British Medical Journal, 17 June.

An intubated baby has copious, tenacious and thick secretions and his oxygen saturations fall to 87 per cent. Following a systematic assessment, his nurse identifies ETT secretions to be the problem and prepares to perform an airway clearance manoeuvre.

• Which members of the multidisciplinary team (MDT) should, or could, be involved in this baby and family’s care during this episode of desaturation?

Answer: This is a potentially life-threatening situation and medical staff must be alerted. MDT involvement includes:

• Physiotherapist: advice and support on airway clearance and repositioning strategies
• Pharmacist: for drugs and nebulisers that may assist in loosening thick secretions or other drugs that may be prescribed to support therapies
• Radiographer/radiologist: for complications that require imaging
• Healthcare assistant: to help as a ‘runner’. Healthcare assistants can also support the family whilst other staff are focused on the desaturating child
• Psychologist: to support parents who may become stressed, traumatised and unable to cope with this situation
• Dietitian: to review the feeding regime if this is perceived to be exacerbating or contributing to desaturating events, e.g. fluid overload
• Domestic/housekeeper: to collect waste that has collected at the bedside and to replenish stock, e.g. hand-hygiene materials
• PICU technician: for troubleshooting medical equipment, e.g. ventilator or suction apparatus
• Specialised medical team: e.g. for bronchoscopy, ENT surgeon for tracheostomy or other specialists, e.g. cardiac surgeons where indicated

Fifteen-year-old Pearl, an oncology patient, is septic and has received 40mls/kg volume resuscitation and antibiotics on the ward according to sepsis guidelines (NICE, 2016).  Pearl was unresponsive to this treatment so she was transferred to PICU for ongoing management. On PICU, Pearl received another 20ml/kg of fluid to support her blood pressure and normalise tachycardia (Dellinger et al., 2013).

Here are Pearl’s assessment details:

Airway: Patent, weak cough

Breathing: RR: 47 breaths/minute, saturations: 98 per cent on 15 litres oxygen via non-rebreathe bag. Comfortable but shallow, rapid breathing, BS: resonant, clear to lung bases. ABG: metabolic acidosis

Circulation: HR: 157 beats/minute. Radial pulse regular, high volume, bounding, ECG: sinus tachycardia, BP is hypotensive – 89/30 (mean: 50mmHg), Temperature: 39⁰C. Shivering (rigors), CRT: flash, hot to touch, dry skin, pink, flushed, appearance, Urine output: oliguria. Lactate 4mmol/l (high).

Disability: GCS: Responding to questions. E₄V₅M₆ (15/15), PERL size 4mm, moving all limbs, blood glucose: 4.0mmol/l, denies pain. Not agitated. Looks lethargic/exhausted

Exposure: No rashes. Hickman line site appears inflamed

Problem: Warm shock

Potential problem: Decompensated shock and organ failure

Goal: Pearl will respond to treatment and recover from this deterioration.

• What actions can we take to help Pearl’s parents cope with this crisis?

Answer: Provide Pearl’s parents with consistent, accurate and timely information both as required and in a planned manner, anticipate and aim to satisfy their needs for information.

For patients like Pearl, a number of specialist teams may be involved, e.g. PICU team, oncology teams. Nurses must co-ordinate all these inputs so that information and communications are consistent and accurate.

• Value the questions parents ask. Feedback to parents how important it is for them to ask questions so that they are not hesitant to raise their concerns

• Make time to answer their questions, do not rush the situation
• Find out parents’ anxieties and preferences about how information should be communicated and its frequency, and incorporate these into care plans
• If parents are not by the bedside when procedures are being performed, ensure there is someone allocated to provide them with regular feedback and keep them updated
• As a general rule, parents should be given the choice as to whether they want to be present for procedures
• Ask parents for feedback on whether they feel involved and if not, how you can facilitate this further
• Involve parents in decision-making, patient assessments, ward rounds and nursing handovers. They have a valuable part to play in these communications
• Find out about Pearl as a person in her own right, her hobbies, interests, likes and dislikes and personalise care and her bed space as much as possible
• Find out about Pearl’s routines and aim to normalise this and the environment as much as possible for her and her family
• Develop nursing care plans in conjunction with her parents until Pearl is able to participate herself
• Talk to and communicate with Pearl even if she appears not to be responding. Do not assume that she cannot hear or respond
• Reassure Pearl’s parents without reinforcing false expectations but at the same time not denying their rights to ‘hope’ (O’Brien, 2014)
• Befriend parents within professional boundaries and a therapeutic relationship (NMC, 2015)
• Perform your tasks and duties towards Pearl in a consistent and an affectionate, caring manner. Show Pearl and her family that you care for her as a person
• Address Pearl and her family in the way that they wish to be addressed
• Demonstrate a protective attitude towards Pearl so that parents feel confident and secure when they leave their child in your care
• Involve parents in ‘cares’ and protect their role as parents, e.g. involve them in eye-care, mouth-care, moisturising skin, meeting personal hygiene and holistic needs
• There may be charities who can also support families in their endeavour to become more involved in their child’s care, e.g. therapeutic massage (e.g. full circle)
• Always provide parents with a choice about how much they want to be involved. Bear in mind there may be cultural/religious differences and not all parents will be engaged in the same way and be mindful of your own unconscious biases
• Encourage Pearl and her parents to voice their concerns and anxieties openly (Colville and Gracey, 2006)

As early as 1959, the Platt report promoted open visiting in children’s wards and the need to involve parents in the care of their child (Ministry for Health, 1959). However, many of the practical behaviours and actions can be spontaneous and individualised and/or dictated by local policies, procedures and philosophies (Latour, 2011). Your own personality, views, self-confidence and experiences plus professional values will influence these interactions. A strong sense of advocacy and justice will influence how well children and their families are empowered but this may be influenced by paternalistic attitudes and the team’s beliefs in what is in the ‘best interests’ of the patient and their families. However, the team that is itself empowered, valued, cared for and open to change are more likely to facilitate FCC which goes further than basic needs for information, communication and task management (Michelson et al., 2011)

References

Latour, J.M. (2011) Empowerment of Parents in the Intensive Care. Rotterdam: Erasmus Universiteit Rotterdam.

NMC (2015) The Code: Professional Standards of Practice and Behaviour for Nurses and Midwives. London: Nursing and Midwifery Council.

Give examples of your own behaviours that children and their families may have found helpful. List the actions and behaviours that may have been perceived as negative.

Answer: Here are some actions and behaviours you may have listed:

• Introducing yourself and what you are about to do
• Reassuring children and families at every opportunity
• Openly demonstrating empathy, sympathy and compassion both in behaviour and the words you use
• Recognising your limitations and seeking appropriate help, support and assistance
• Demonstrating calmness and maturity particularly in anxiety-provoking situations and emergencies
• Communications and conversations that are tailored around the children and families’ needs (Foster et al., 2016)
• Conversations around the bedside that include children and families and are within professional boundaries
• Avoid jargon or terminology that is exclusive and disempowering
• Thoughtfulness and anticipation of the child’s and family’s needs, for example negotiating when might be the best time to assist the patient with a wash so that families can have some control over the timing and process
• Negotiating care with the child who is able to participate in this
• Perceived as being available (Foster et al., 2016)
• Respecting dignity and privacy, for example asking for permission to enter a bed space if the curtains are closed 
• Being observed as a generally kind and helpful person both to the child and families and to the team as a whole and to others on the unit
• Always showing courtesy to children and their families and balancing the family’s need for hope without reinforcing false or erroneous expectations
• Ensuring families are aware of the facilities available to them for breaks, drinks, etc.
• Asking about preferences and getting to know the children and families as individuals and as a unit.
• Informing children and families when you are leaving the bed space, going for your break, letting them know who will cover for you when you are on break and who to ask for help if they become worried
• Always explaining to children and families what you are doing and not assuming they will know or understand 
• Creating opportunities for children and their families to ask questions, raise issues and to give you feedback on whether you are meeting their needs. Asking children and families for direct feedback is useful
• Being open-minded and a willingness to consider suggestions
• Being calm and consistent in your approach

Try and list some concrete examples of your behaviour that will help you to become more self-aware and conscious of these behaviours. You may notice that many of the actions and behaviours you list are based on the code for professional practice (NMC, 2015) but also your own values, attitudes towards care and caring, your own code of ethics and moral principles are likely to contribute to your approach (Meert et al., 2013). 

Actions and behaviours that may have been perceived as negative could include:

• Performing your duties in a rushed and hurried manner, with little communication and/or interaction
• Not including the child and/or family when performing a task
• Prioritising the task rather than the patient – task orientation
• Showing your anxiety and tiredness or lack of interest and motivation, even frustration – behaviours that demonstrate lack of professionalism and enthusiasm
• Losing focus in what you are doing, more interested in something else that may be going on in the unit or another bed space
• Expecting children and their families to conform to your routines and priorities
• Restricting visitors and visiting times
• Lacking in sibling care
• Marginalising extended family care when extended family members are part of the family unit
• Not prioritising cultural and religious differences, unconsciously biased and lacking in awareness
• Taking over tasks that children and families may be able to perform, i.e. obstructing their move towards independence and free choice
• Making children and families wait without adequate explanation or need
• Making judgements about when to provide information or updates
• Making assumptions about children and their families, e.g. assumptions about the type and quality of information they need or how involved they should be
• Misunderstandings between children/parents and professionals (Brooten et al., 2012)
• Being closed-minded and/or making excuses for not making a change
• Perceived as not going the ‘extra mile’, doing the least necessary (Brooten et al., 2012)
• Showing how tired you are and expecting families to consider your needs instead, lacking in sensitivity and self-awareness
• Using policies and procedures as an excuse for recognising or meeting individual needs
• No sense of affection from you and giving a sense of ‘it’s just a job’
• Social chit-chats with colleagues at the bedside that exclude children and families

You may recognise that some of the negative behaviours are derived from feelings of your own lack of awareness or disempowerment, ingrained attitudes of staff that cause you frustrations and/or lack of support, resources and/or development in placement or practice and your own unacknowledged feelings of helplessness, anxiety, stress or tiredness.  It may stem from feelings of ‘burn-out’ and emotional exhaustion when caring in such stressful environments (McCarthy and Gastmans, 2015; McGibbon et al., 2010). Therefore, it is important to become aware of these issues and to deal with it proactively so that it does not interfere with or impact on your patient and FCC.

References

Brooten, D., Youngblut, JM., Seagrave, L., Caicedo, C., Hawthorne, D., Hidalgo, I. and Roche, R. (2012) ‘Parent’s perceptions of health care providers actions around child ICU death, what helped, what did not’, American Journal of Hospice and Palliative Medicine, 30 (1): 40–9.

NMC (2015) The Code: Professional Standards of Practice and Behaviour for Nurses and Midwives. London: Nursing and Midwifery Council.

Some critically ill children and their families experience post-traumatic stress disorder (PTSD) following a PCCU admission and require follow-up care on discharge from PCCU. Read Colville and Pierce’s (2012) article ‘Patterns of post-traumatic stress symptoms after paediatric intensive care’, ICM 38: 1523–31.

• What are the potential causes of PTSD for critically ill children and their parents?

Answer: Any actual or perceived traumatic event can cause PTSD in critically ill children and their families. One study found that the child’s appearance, sights and sounds of the PCCU and procedures and some staff communications were particularly distressing for parents (Colville and Gracey, 2006). Other studies suggest that PTSD is commonly experienced by children and their families long after discharge from the PCCU (Colville et al., 2010; Knoester et al., 2007; Manning et al., 2013). Colville and Pierce (2012) found that almost half the child–parent cohorts they studied experienced PTSD 12 months after their PICU admission. Subjective symptoms were more prevalent than objective ones which may mean that more subtle symptoms may be at risk of being overlooked by health professionals. Delayed reactions were common in this study, suggesting that more should be done to screen these children and their families for PTSD and provide ongoing support following their discharge. Professionals may overlook many common symptoms as indicative of PTSD.

Blom and Oberink (2011) found that the clinical features of PTSD in children included:

• Child waking up and not knowing where their parents were
• Vomiting
• Hallucinating
• Choking on the ventilator tube
• Some children found the whole PICU experience stressful

For parents the most traumatic events were:

• The pre-admission event
• Their child being attached to machines for the first time
• Realising their child could die
• Receiving a life-threatening diagnosis
• Finding the whole experience/everything connected with the admission and PICU stay stressful

Ward-Begnoche (2007) found that recurrent and intrusive memories, nightmares, flashbacks, hallucinations, intense reactions to stimuli related to the trauma, repetitive play and re-enactment of the trauma as if in a trance, avoidance behaviours, inability to recall an important aspect of the trauma (dissociative amnesia) and a brooding sense of fore-shortened future, were some of the distressing symptoms experienced by children and their parents. Diminished interest or participation in significant activities, a restricted range of affect, a heightened sense of arousal, difficulty falling or staying asleep, irritability, outbursts of anger, difficulty concentrating, hypervigilance and an exaggerated startle response were other symptoms of PTSD.

PTSD is increasingly recognised in adult ICU patients where patient diaries (Jones et al., 2010) and early psychological interventions (Peris et al., 2011) are considered beneficial to PTSD. These traumatic experiences are not that dissimilar to some of the experiences of children and their parents and similar strategies are being considered and/or piloted in some PCCUs (Lynch, 2016 personal communication). One particular programme in paediatrics is a programme known as COPE (Melnyk et al., 2004) which consists of a series of activities and stories to help children cope following a traumatic PICU experience (Melnyk et al., 2004). An outreach or PTSD follow-up clinic may also be required as a valuable adjunct to PICU care for some (Colville et al., 2010).

Hasan, a two-month-old baby who was intubated and ventilated for bronchiolitis leading to respiratory failure has been recently extubated (removal of ETT) and transitioned to high dependency unit (HDU) care. Hasan’s assessment is highlighted below:

Observation: Lying comfortably on his back, breathing spontaneously and watching and interacting with his mum.

Airway/breathing:

Inspection: Naris clear and patent, no excessive secretions, in room air saturating at 97 per cent, RR: 42 breaths/min. No excessive WOB. No stridor or other signs of airway obstruction or swelling – a risk factor for recently extubated young children. Hasan’s breathing is synchronous and there is bilateral chest wall expansion (equal). He has a strong, intermittent and non-problematic cough. His colour is normal for his ethnicity

Palpation: No evidence of retained secretions on chest

Auscultation: Bilateral breath sounds clear to bases. No crackles or wheeze.

Circulation: Stable. HR: 115 beats/min, sinus rhythm, afebrile, CRT < 2 seconds, normotensive, warm and well-perfused, urine output: 1.5 ml/kg/hr

Disability: All sedation discontinued; no signs of withdrawal. E₄V₅M₅ (14/15), appropriate for age, fixing and following, moving all limbs normally and has normal tone. PEARL 3mm. Blood glucose: 4mmol/L

Exposure: Hasan has an intravenous cannula on the right hand which is infusing maintenance fluids at a normal rate. A spigotted nasogastric tube is in situ. He has a urethral catheter which can be removed.

Problem/need: Hasan and his family need to feel prepared for ward discharge

Potential problem: Hasan is recently extubated and may deteriorate to the extent of needing reintubation or respiratory support. His family may feel anxious about his discharge

Goal: Hasan will continue his recovery. Hasan and his parents will feel fully prepared for his discharge.

• How can we prepare Hasan and his parents for discharge?

Answer: Transitioning children into ward care can be a very stressful time for patients and their families. It requires good communications and forward planning. The care plan below provides an example of the core principles of a PICU discharge. Complex discharges involve input from many specialist hospital and community teams for transitioning PICU children and their families. 

Care plan for Hasan’s PICU discharge:

• Identify Hasan’s readiness for transition to ward care and prepare early
• Review and update Hasan’s care plans with Hasan’s parents and the MDT as Hasan’s needs become less PICU-orientated
• Identify a named nurse who will be able to provide consistency for discharge planning and transition. A liaison or outreach nurse is ideal (Linton et al., 2008)
• Regularly communicate, negotiate and document discharge plans with family
• Explore parents’ concerns and anxieties related to the discharge and who to contact in case of need following transfer
• Arrange for parents to visit the ward area and to meet ward staff
• Provide written information/leaflet or booklet about discharge and answer any queries related to this (Linton et al., 2008).
• Reassure them with specific information. For example, inform them that there will be a track and trigger tool, e.g. paediatric early warning score (PEWS) in place to monitor patients like Hasan and keep him safe (DH, 2015; NHS Institute for Innovation and Improvement).
• Negotiate strategies to manage their identified concerns and anxieties
• Negotiate how Hasan’s ‘deintensifying’ of PICU monitoring and plans will take place including your proposed actions and timescales
• Keep parents involved and informed and reassure them regularly as you ‘deintensify’ Hasan
• Encourage and empower Hasan’s parents as they take more control over his care.
• Act to make sure they do not feel overly anxious or abandoned as they take on more of his care (NMC, 2015)
• Screen Hasan for effects of pain, withdrawal and other adverse effects of critical illness and painful procedures/experiences and arrange for follow-up care
• Screen Hasan’s parents for any signs of PTSD and arrange follow-up care

Rationale: To engage Hasan and his parents in the discharge process so that they feel prepared and safe for the transition into ward care and will not feel anxious or abandoned.

Expected outcome: Safe, appropriate and satisfied discharge into ward care and parents who adapt to this transition on Hasan’s and their own behalf.

Reference

NMC (2015) The Code: Professional Standards of Practice and Behaviour for Nurses and Midwives. London: Nursing and Midwifery Council.