Think about how you view the heart and the image that the word ‘heart’ conjures in your mind. Do you see the heart as physical, emotional or both?

Answer: There is no right or wrong answer here as it depends on our point of view. As the introduction explains, the heart is both a physical organ and an emotional concept, both of which are deemed to be vital to life. What is important however, is that you consider your own thoughts and feelings in relation to the heart, because in doing so, you will be able to develop your skills of emotional intelligence, compassion and empathy.

In the opening quote to this chapter, Alison talks about how the nurses developed a therapeutic relationship with her daughter. Think about how family-centred care can be used to address the emotional needs of children, young people and their families and answer the questions below.

• Why is knowledge of the person behind the disease so important?

Answer: Defining or labelling someone based on their disease ignores who they are as an individual and as a person. Talking to children and young people about their interests demonstrates that they are valued and important in their own right, helping to develop a therapeutic and trusting relationship. Knowing about someone’s interests also provides a topic away from their health needs and can act as distraction therapy.

• What concerns do you think the child/young person/family might have related to the heart?

Answer: Defining or labelling someone based on their disease ignores who they are as an individual and as a person. Talking to children and young people about their interests demonstrates that they are valued and important in their own right, helping to develop a therapeutic and trusting relationship. Knowing about someone’s interests also provides a topic away from their health needs and can act as distraction therapy.

• How do you think family-centred care could help?

Answer: Family-centred care focuses care on both the child and the family, recognising that families need support in order to provide care for their children, and that families also have their own needs. Caring for a child with a life-limiting or life-threatening condition is both physically and emotionally demanding. In addition, families of children born with cardiovascular disease may feel derailed from their life journey when their anticipated healthy baby is a sick baby in need of major or life-saving surgery, or medical intervention in early life. Parents will react differently – some will embrace the challenge of caring for a sick child and continue to bond with their child, others will hold back and delay the bonding process until their child’s future is more certain. It is important to remember that each family is different and will cope in different ways. A family with reduced presence at the hospital may require more support from nursing staff than a family who keep a constant vigil. It is the nurse’s role to find out what each family needs to ensure those needs are met in a compassionate, caring and holistic manner.

You are overseeing the admission of Oliver with your mentor. Oliver is a 3-month-old baby with a VSD who has been admitted for surgical repair. Oliver’s heart defect was identified following a concern from his health visitor that his weight was faltering. Oliver’s mum, Katie, looks very young and appears very anxious.

• During the admission process, what information would you need to gain from Katie?

Answer:

• Who has parental responsibility in the legal sense, for Katie
• Who is part of their family unit?
• Is there any social work involvement/need?
• What support does Katie have at home?
• Activity of living information about Oliver, e.g. feeding, sleeping pattern, etc.

• What concerns might Katie have?

Answer:

• Number of healthcare professionals involved
• Understanding the consent process
• Understanding risks of surgery
• That people will listen to her and understand her unique needs

• What members of the multi-disciplinary/interprofessional team can help to support Oliver and Katie?

Answer:

• Ward and PICU nursing staff
• Cardiologist and cardiac surgeon
• PICU intensivist
• Play therapist
• Cardiac liaison nurses
• Dietician/breastfeeding link nurse
• Anaesthetist
• Psychologist
• Hospital chaplain
• Pharmacist

Whilst you are doing Oliver’s baseline observations (vital signs), you overhear Katie having a heated conversation on her mobile phone with someone. Katie leaves the ward briefly and on return, she is visibly upset and appears to be more agitated and anxious than previously. You ask Katie if everything is all right – she smiles and tells you that Oliver’s father will be visiting. You notice Katie is shaking.

• What concerns might you have?

Answer:

• Is Katie in an abusive relationship?
• Does the father have parental responsibility and how would you find that out?
• Is this person a threat/danger to Oliver/Katie?

• What would you say to Katie?

Answer:

• Ask if she is okay in a way that encourages a response
• Ask if she needs help with anything including someone to listen or someone to whom she can talk
• Offer the opportunity to talk to someone else in confidence, play therapist, other

• Who would you tell?

Answer:

• Mentor
• Nurse in charge
• Safeguarding link nurse
• Health visitor

• Where would you document your concerns?

Answer:

• Handover sheet (to ensure information is passed on to the next shift)
• Nursing kardex
• Nursing assessment notes
• Start safeguarding paperwork and referral process

• How would you promote family-centred care?

Answer: If Oliver/Katie are deemed to be at risk, the priority is to safeguard them. It’s important to know if Oliver’s father has parental responsibility and if he has rights to contact, as these may be separate. If Oliver’s father has parental responsibility, Katie is obliged to keep him updated on Oliver’s wellbeing and progress, even if he has no contact rights. With parental responsibility, Oliver’s father also has the responsibility to agree to medical treatment. Katie may need support in meeting her obligations to Oliver’s father.

Malachi is 14 years old and has Wolff-Parkinson-White syndrome. Malachi enjoys sport and has had several recent episodes of SVT that have required hospital treatment. Malachi has been admitted for catheter ablation of his extra pathway to prevent further episodes of SVT.

• Who should be approached to give consent for Malachi’s procedure?

Answer: Legally, Malachi’s parents are still required to give consent for the procedure. However, Malachi could be considered as Gillick competent and if deemed to be so, could also give his consent.

• What care would Malachi require following his catheter procedure?:
  
  • Regular observation and recording of vital signs and ECG monitoring
  • Regular observation and record of femoral wound to check for bleeding.
  • Encouraged to remain on bed rest for several hours to reduce the chance of bleeding from the femoral wound. Provide distraction activities to lessen effects of enforced immobility
  • Active assessment and treatment of post-operative nausea and vomiting as vomiting can raise blood pressure, which increases the chance of bleeding from the femoral wound.
  • Routine post anaesthetic care – pain and symptom assessment management, offering fluids and diet as tolerated, monitoring and recording progress, increasing mobility, passing urine adequately
• What might the challenges be in providing Malachi with privacy and dignity during his admission?:
  
  • Regular checks of femoral wound may be embarrassing for Malachi – you could ask him to check his own wound with guidance as to what to look for
  • Malachi will need to use a urine bottle if he needs to pass urine soon after return from theatre. His privacy in doing this must be maintained – draw curtains around the bed and ask any visitors, including parents, to leave the bedside
  • In a ward where there are a range of different aged children, it is a good idea to try and nurse young people in a cubicle to provide them privacy and dignity, or in a bay with other young people of similar developmental stage/age
• What are the issues that need to be considered as Malachi transfers between child and adult services?

Answer: Transition can be a challenging process as the young person adjusts from care delivered by people he may have known for a long time, to a new team. Some young people find the structure of adult-based services to be very different to what they are used to in children’s services and they may feel isolated and neglected as a result. The young person should be prepared for the transition by being introduced to their new team and through gradually being encouraged to make their own decision about their health and healthcare. This means the team should respect and listen to his views.  It can be difficult for parents/carers and healthcare professionals to step back and facilitate the young person to make decisions and the children’s nurse should support the family in the transition process.

Many of the patients you will nurse with cardiovascular problems will be infants. Whilst it is essential they receive the appropriate medical care, it is also important for their cognitive development that you focus on various aspects of appropriate developmental care. 

• How could you promote this ethos?

Answer:

• Involve the play specialist and the infant’s parents to encourage play and stimulation, e.g. sound, visuals, as well as periods of rest
• Encourage interaction of parents with their infant through cuddles and skin-to-skin time (kangaroo care) and other developmental care practices
• Support parents to recognise and respond to their baby’s cues
• Demonstrate to parents some appropriate handling/positive touch techniques for their baby
• Appropriate positioning of the infant can reduce any future postural problems and also reduce stress levels

Here is a link to key developmental care aspects that are often in evidence on a neo-natal unit:

www.cuh.org.uk/rosie/services/neonatal/nicu/developmental_care/support_comforting_baby.html

• What barriers are there to delivering appropriate developmental care?

Answer:

• Infant may be too sick or unstable to tolerate cuddles or too much handling.
• Parents may be reluctant, for many reasons, to participate in care.
• Busy ward environment may mean the nursing team have less time to support parents and promote stimulation and interaction.
• Staff may lack knowledge of specific infant developmental care.

Using your previous knowledge and learning from placement, reflect on the purpose of each of the following diagnostic tests.

• Chest x-ray – used to detect pericardial or pleural effusions, cardiomegaly or a pneumothorax.
• Echocardiogram (Echo) – uses ultrasound waves to give a very detailed picture of the heart in terms of function, blood flow and pressures.
• ECG (Electrocardiogram) – records the electrical activity of the heart.  Leads are placed around the child’s chest area and to the limbs in a 12-lead pattern and a printed trace of the heart rate and rhythm is produced.
• Cardiac MRI – Magnetic Resonance Imaging (MRI) provides detailed internal images of the body. It is particularly useful for demonstrating vascular structures and exploring blood flow. MRI is a time-consuming procedure during which the child/young person is required to lie still in an enclosed space. A general anaesthetic may be required for young children. MRI is contraindicated for patients with cardiac pacemakers and defibrillators due to the powerful magnetic field.
• CT scan – a series of x-ray images taken at multiple angles to reconstruct an image of a particular body area. Both the heart and the great vessels can be imaged clearly via CT scan. Much faster to achieve than an MRI, general anaesthetic is not usually required, but sedation may be needed.
• Cardiac catheterisation and angiography – an invasive procedure that requires the passing of a catheter into a vessel in either the groin (femoral vein/artery) or neck (internal jugular vein or subclavian vein) and threading this into the main vessels and heart chambers. A diagnostic tool to assess vascular resistance and gather physiological information through the use of electronic pressure transducers in the catheter tip, or the injection of an angiographic contrast medium. Cardiac catheter is also used for interventional procedures such as coil occlusion of patent ductus arteriosus.

Imagine you are taking verbal handover of a patient from the paediatric cardiac intensive care unit.

• What questions will you need to ask prior to the patient arriving on the ward?

Answer:

• Do they require a high dependency or ward bed?  (Some patients serve their high dependency time in intensive care.)  If they require a ward bed, ensure their bed allocation is appropriate: for example, near the nurses’ station.
• Agree a mutually suitable time for the transfer with the intensive care nurse.  Check with your Nurse in Charge what other possible transfers are expected on the ward.
• In order to check you have the appropriate additional equipment ready at the bedside ask if they are on oxygen or optiflow/vapotherm, do they have any chest drains and are they on any infusions? Do they have any particular needs?
• Is the patient on any non-stock medication – if so ask for this to come to the ward with the patient, or order from pharmacy in preparation. Make sure these are correctly prescribed.
• Obtain an overview of their condition, background and any recent surgery.

Ensure the bed-space has been cleaned and all monitoring and safety equipment is present, clean, checked, and functioning correctly with appropriate alarm limits set for the child’s needs. 

• What information will you need to obtain and from whom when the child arrives?

Answer: As soon as the child arrives on the ward ensure they are attached to appropriate monitoring, connect any oxygen or optiflow/vapotherm, or any chest drains and plug in any infusion pumps to avoid the risk of batteries becoming low. Introduce yourself as soon as possible to child and parents (if present) and explain that you are now taking handover from the intensive care nurse.

Information to be obtained during handover:

• A full medical background: underlying diagnosis, details of any other medical conditions, details of surgery performed, any complications, date extubated, date any drains were removed. State of child’s skin, wounds and fluid balance
• Medications: Ensure drugs chart is up to date and everything has been prescribed correctly and ordered. Check if the patient has any allergies.  Double check that any infusions/intravenous fluids running are prescribed correctly and are running at the correct rate for the child’s weight/BMI/prescription. Ensure fluid balance is as expected for the individual child’s needs.
• Check what intravenous access the patient has.  Ensure that the date of insertion and date of last access are clearly documented.  Examine the sites for any signs of redness, infection and any loose or compromised dressings.
• Check feeding regime and malnutrition scoring tools are being used.  For infants check the amount, frequency and type of feeds.  Also check when any NG tube was inserted (and if it is a long- or short-term tube).  Ascertain if it is mum’s intention to establish breastfeeding.  If mum has been expressing, check any frozen supply has been brought to the ward with the transfer.  For older children check if they are on an MCT (medium-chain triglyceride) diet – this is necessary for some children who develop a chylothorax after surgery. 
• Parents/guardians – are they aware of the transfer?  Do they have accommodation arranged or will this need to be addressed?  Are there any safeguarding issues to be addressed?  Are there any restrictions on who may visit the patient? (Ensure that this is done in an appropriate setting where other parents cannot overhear.)

Ensure the doctors are informed of the patient’s arrival as they may wish to carry out an examination or diagnostic tests.

• What non-medical information might you need in order to provide appropriate holistic care to the child and family?

Answer: This list is not exhaustive, but may include:

• Patient specific information: For babies – are they allowed a dummy/soother, any techniques used for settling them?  For older children – any favourite toys, DVDs, special words?

• Parent specific information:  How involved have parents been to date?  Are they particularly anxious and require additional support to become involved, or, if they have been on intensive care for a long time are they confident in providing care and feeding their child and require minimal support from nurses? Is there anxiety from step-down care which need to be addressed as parents can find this transition very difficult?
• Family specific information: For example, do they have other children at home who have any medical issues, are siblings coping with parent’s absence from the home? Do the family need additional support e.g. social worker, psychologist, play specialist?

Remember to make full use of the interprofessional/multidisciplinary team attached to your unit to ensure that the child/young person and the family is as fully supported as possible.

Reflect on handovers that you have observed or participated in. Were they performed in a structured manner to ensure all aspects were covered?  Was a tool such as SBAR utilised?