Quality standard

Quality statement 3: Involving parents and carers

Quality statement 3: Involving parents and carers

Quality statement

Parents and carers of preterm and term babies receiving neonatal parenteral nutrition have regular opportunities to discuss their baby's nutritional care with healthcare professionals.

Rationale

It can be challenging and stressful for parents and carers to have a baby being cared for in a neonatal or paediatric unit. Nutritional care is often not discussed when it is first given because the focus is on the baby's underlying condition. However, it is important that parents and carers are given regular opportunities to discuss their baby's nutritional care with their healthcare professionals. This will help to ensure that they understand the nutritional care their baby is receiving.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.

Structure

Evidence of local arrangements to ensure that parents and carers of preterm and term babies receiving neonatal parenteral nutrition have regular opportunities to discuss their baby's nutritional care with their healthcare professionals.

Data source: No routinely collected national data for this measure has been identified. Data can be collected from information recorded locally, for example, written protocols for communication about nutritional care with parents on the neonatal and paediatric unit (which may be used during ward rounds or appointments) or specific time allocated in healthcare professionals' schedules for speaking with parents and carers about nutritional care.

Outcome

Proportion of parents and carers of preterm and term babies who received neonatal parenteral nutrition who are satisfied with communication with healthcare professionals about the nutritional care received.

Numerator – the number in the denominator who are satisfied with communication with healthcare professionals about the nutritional care received.

Denominator – the number of parents and carers of preterm and term babies who received neonatal parenteral nutrition.

Data source: Data can be collected from information recorded locally, for example, from patient records and from local surveys of parent and carer experience. For babies treated in neonatal units, the National Neonatal Audit Programme collects data on parental consultation within 24 hours of admission and parental presence at a consultant ward round.

What the quality statement means for different audiences

Service providers (neonatal and paediatric units) ensure that systems are in place for parents and carers to have regular opportunities to discuss their baby's nutritional care with the healthcare professionals caring for them. This can include parents and carers joining ward rounds, having time to have meaningful discussions about nutrition with their baby's consultant and their neonatal or paediatric nurses, and knowing when staff members will be available to speak to them. Healthcare professionals' schedules should have specific times allocated to allow them to arrange opportunities to speak with parents and carers. Evidence-based written information on parenteral nutrition and enteral feeding is also given to parents and carers for them to read through and discuss with their healthcare professionals at an agreed time.

Healthcare professionals (such as neonatal and paediatric consultants, nurses, dietitians and pharmacists) have allocated time to speak with parents and carers of preterm and term babies receiving neonatal parenteral nutrition. They understand that having a baby who is receiving neonatal parenteral nutrition can be distressing for parents and are mindful of this when discussing the baby's nutritional care with them. They give clear explanations of the nutritional care the baby is receiving and when enteral feeding may be able to begin, and give parents and carers opportunities to ask questions. They also give parents and carers written information on parenteral nutrition and enteral feeding that they can read through and discuss with them at an agreed time.

Commissioners (such as clinical commissioning groups, integrated care systems and NHS England) ensure that they commission services in which parents and carers of preterm and term babies receiving parenteral nutrition have regular opportunities to discuss their baby's nutritional care with healthcare professionals. They ensure that they commission services in which healthcare professionals have specific time allocated to allow them to arrange times to speak with parents and carers about their baby's nutritional care.

Parents and carers of newborn babies who are being given nutrition directly into their bloodstream through a vein (intravenously) have regular opportunities to talk about their baby's nutritional care with the healthcare professionals caring for their baby. They are given written information on parenteral nutrition and feeding that they can discuss with their healthcare professional, and they are able to ask any questions and discuss any concerns they have about their baby's nutritional care.

Source guidance

Neonatal parenteral nutrition. NICE guideline NG154 (2020), recommendations 1.10.2 and 1.10.4

Definitions of terms used in this quality statement

Neonatal parenteral nutrition

Nutrition given directly into the bloodstream through a vein (intravenously) in newborn babies who cannot take adequate milk feeds because they are too small or very unwell. It includes nutrients such as amino acids, glucose, fat, electrolytes, vitamins and trace elements. The neonatal period is defined as up to 28 days after birth for babies born at term and 28 days after their due birth date for those born preterm. [Adapted from NICE's guideline on neonatal parenteral nutrition and expert opinion]

Discussions about nutritional care

Topics to discuss with parents or carers include:

  • why their baby needs parenteral nutrition

  • what parenteral nutrition involves

  • the importance of good nutrition for newborn babies

  • how long their baby is likely to need parenteral nutrition for

  • common concerns, for example, central venous catheter placement, the risk of catheter-related infections, taking blood samples, and whether they can hold and care for their baby

  • simultaneous enteral feeding, unless this is not possible

  • how their baby's progress will be monitored

  • how their baby will be weaned off parenteral nutrition.

[NICE's guideline on neonatal parenteral nutrition, recommendation 1.10.2]

Equality and diversity considerations

Parents and carers should be provided with information about the nutritional care their baby is receiving that they can easily read and understand themselves, or with support, so they can communicate effectively with the healthcare professionals caring for their baby. Information should be in a format that suits their needs and preferences. It should be accessible to people who do not speak or read English, and it should be culturally appropriate and age appropriate. Parents and carers should have access to an interpreter or advocate if needed.

For parents and carers with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.