A glossary for parents and carers

Bag and mask

• Handheld emergency resuscitation equipment used to provide oxygen to a patient who is not breathing
• The mask is fitted over the patient’s mouth and nose using a tight seal to optimise breathing
• The attached air bag can then be squeezed to push oxygen into the lungs.

Bi-Pap/CPAP (Bi-level Positive Airway Pressure/Continuous Positive Airway Pressure)

• A non-invasive machine (that is, there are no tubes going into the child’s body) that can assist children to breathe
• It does not require the insertion of tubes into the child’s airway
• The child will need to wear a fitted face mask that is connected to the BIPAP/CPAP machine
• This type of breathing support can be given at home
• This is a non-invasive treatment. 

Cardiac arrest

• Occurs when the heart stops beating
• No blood is pumped around the body and the person will usually die.

Cardiopulmonary resuscitation (CPR):

• An emergency intervention that may be done when a child’s heart suddenly stops pumping
• Breathing support is provided alongside chest compressions to pump the heart and deliver oxygen to the brain in an attempt to restart the heart
• CPR is often not successful.

Comfort care

• Care is provided when there has been a change in the goals to care for a child with
• a life limiting illness
• Treatment options that aim to prolong life are reduced or stopped and the goal of this care changes to promote their comfort
• This includes the easing or prevention of symptoms that may cause distress or suffering.

Community nurse

• A nurse who works in the community (your local area) and provides care in the home of a patient and family
• A community nurse works alongside your child’s team at the hospital but does not replace them.

Dyspnoea

• The feeling of breathlessness, or being unable to breathe adequately
• Dyspnoea can cause anxiety, being anxious can make it harder to breathe
• Dyspnoea can be treated with medications. 

End of life care

• The care given to a child when their condition has deteriorated and they are close to death
• The period of end of life can be different for each child and may vary from hours to days to weeks or months. 

Goals of care

• How much treatment parents/carers want for their child
• This may include the location where they want them to be or things they might like to achieve (such as birthday, holiday, and school dance)
• Discussions that establish the goals of care and treatment options (for example intubation, ventilation, CPR) usually occur with the medical team when a child’s condition has deteriorated.

Hospice

• In Australia, hospice generally refers to a place where children with a life limiting illness
• and their families can go for a break (respite)
• For a child who is deteriorating, some families choose to go to a hospice for end of life care
• Hospices have experienced palliative care staff available and provide care in a home-like environment
• An example of a children’s hospice is Bear Cottage in Manly, Sydney. 

Informed decision-making

• Parents and carers are able to make informed decisions when they have been given enough information about their child’s condition
• Parents/carers need to have a good understanding of this information and the treatment options that are available to help them make an informed decision that is right for their child and family. 

Intubation

• An airway tube that is inserted into the mouth or nose of a child to help them breathe if they are unable to properly do so themselves
• Intubation is used to assist breathing
• It is regarded as ‘invasive’ treatment. 

Location of care

• The place where a child is receiving care
• This is commonly at home, in hospital or a children’s hospice. 

Noisy breathing

• When death is near, breathing can often become rattly or noisy, due to pooled secretions in the throat
• This can be distressing to listen to, but is rarely of concern to the patient
• It is usually a sign that death is near. 

Oral airway suction

• Occurs when a tube is inserted into the mouth or nose of a child and removes secretions 
• Suctioning is necessary when a child has difficulties swallowing or has increased secretions that affect their ability to breathe.

Oxygen

• Children may require extra oxygen (supplemental oxygen) for a number of reasons (such as a severe respiratory infection)
• A child’s respiratory doctor will usually decide whether extra oxygen should be given
• Oxygen is considered a medication because of its ability to affect the body
• Oxygen saturations or ‘sats’ measure or estimate how much oxygen is in the blood.

Paediatric

• Infants, children and young people under 18.

Palliative care

• Skilled support and symptom management given to improve the quality of life of patients who have a serious or life-threatening illness. 

Palliative care team

• Specialist health professionals (doctors, nurses, psychologists, social  workers, physiotherapists, occupational therapists and child life therapists) who have skills and experience to provide a high level of care for a person with a life threatening illness and their family
• They also guide and support other health care professionals involved in the care of the child.

Quality of life

• An assessment of a person’s own sense of wellbeing, such as their level of comfort or ability to enjoy or pursue daily activities without suffering.

Spiritual support

• Spirituality can be difficult to describe but can be anything that shapes beliefs  and brings understanding and meaning to our lives
• It is those things that bring hope, purpose, comfort and a source of strength
• It is often through connection with people or things that have meaning or are sacred
• Spirituality can be defined through religion or belief in a God, being, or higher power
• It can be through faith, prayer and meditation or, for example, time to reflect on your own or with someone else
• For some people, spiritual support is just having those they love around them and for others strength is drawn from a deep faith.

Terminal breathing

• Irregular and very shallow breathing, usually with long pauses
• This can be a sign that death is near.

Terminal care

• Care provided in the last few days or weeks of life. 

Tracheostomy

• A surgical procedure to cut an opening into a child’s windpipe (trachea) so that a special tube can be inserted to assist with breathing 
• A tracheostomy can be permanent or temporary
• This is an invasive procedure.

Ventilator

• A breathing machine designed to breathe for a child when they are unable to do so  themselves
• A ventilator is a common piece of equipment used in intensive care units
• When a patient is on a ventilator they are often referred to as being “ventilated”.