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Specialist neonatal respiratory care for babies born preterm

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Quality statement 5: Parental involvement

Quality statement

Parents or carers of preterm babies who are having respiratory support are helped to care for their baby.

Rationale

Involving parents or carers in planning and delivering day-to-day care for their preterm baby while in hospital, for example feeding and nappy changing, can help to support attachment, improve parental confidence and reduce maternal mental health conditions. If parents or carers are confident to manage their baby's condition on discharge and able to use specialist equipment safely at home, their baby may be able to come home earlier. Poor psychological health can affect bonding between parents and carers and their baby, so access to psychological support can be beneficial.

Quality measures

Structure

a) Evidence of local arrangements to ensure that parents or carers of preterm babies having respiratory support are involved in discussions and decisions about their baby during ward rounds.

Data source: Local data collection, for example, protocols to involve parents and carers during ward rounds. The National Neonatal Audit Programme (NNAP) measures the proportion of admissions where parents were present on a consultant ward round on at least 1 occasion during their baby's stay.

b) Evidence of local arrangements to ensure that parents or carers of preterm babies having respiratory support have 24 hour access to their baby.

Data source: Local data collection, for example, protocols on parental or carer access to their preterm baby while in a neonatal unit.

c) Evidence of local arrangements to ensure parents or carers of preterm babies having respiratory support are involved in their baby's day-to-day care and are able to use specialist equipment on discharge.

Data source: Local data collection, for example, protocols to involve parents or carers of preterm babies having respiratory support in their baby's care.

d) Evidence of local arrangements to ensure parents or carers of preterm babies having respiratory support are offered psychological support while their preterm baby is on respiratory support.

Data source: Local data collection, for example, availability of professionals trained to deliver psychological support to parents or carers of preterm babies.

Process

a) Proportion of parents or carers of preterm babies who are having respiratory support who are involved in discussions and decisions about their baby during ward rounds.

Numerator – the number in the denominator who are involved in discussions and decisions about their baby during ward rounds.

Denominator – the number of parents or carers of preterm babies who are having respiratory support.

Data source: Local data collection, for example, audits of patient records of the frequency that parents or carers participated in ward rounds during their baby's admission.

b) Proportion of parents or carers of preterm babies who are having respiratory support who have 24-hour access to their baby.

Numerator – the number in the denominator who have 24-hour access to their baby.

Denominator – the number of parents or carers of preterm babies who are having respiratory support.

Data source: Local data collection, for example, audits of patient records of the frequency that parents or carers participated in ward rounds during their baby's admission.

c) Proportion of parents or carers of preterm babies who are having respiratory support who are involved in providing their baby's day-to-day care.

Numerator – the number in the denominator who are involved in providing their baby's day-to-day care.

Denominator – the number of parents or carers of preterm babies who are having respiratory support.

Data source: Local data collection, for example, audits of patient records.

d) Proportion of parents or carers of preterm babies who are having respiratory support who receive training to use specialist equipment before their baby is discharged.

Numerator – the number in the denominator who receive training to use specialist equipment before their baby is discharged.

Denominator – the number of parents or carers of preterm babies who will be having respiratory support following discharge.

Data source: Local data collection, for example, audits of patient records.

e) Proportion of parents or carers of preterm babies on respiratory support who have access to psychological support while their baby is on the neonatal unit.

Numerator – the number in the denominator who have access to psychological support.

Denominator – the number of parents or carers of preterm babies on respiratory support on the neonatal unit.

Data source: Local data collection, for example, audits of patient records.

Outcome

Proportion of parents or carers who feel confident to care for their preterm baby at home.

Numerator – the number in the denominator who feel confident to care for their preterm baby at home.

Denominator – the number of parents or carers of preterm babies who have received respiratory support.

Data source: Local data collection, for example, surveys of parents' and carers' experience.

What the quality statement means for different audiences

Service providers (such as neonatal units, including special care units, local neonatal units and neonatal intensive care units) ensure that systems are in place for parents or carers to be supported to be involved in their baby's care. This can be through participation in ward rounds, providing day-to-day care and, if their baby is being discharged on respiratory support, understanding how to use specialist equipment at home. They also ensure that parents or carers have access to their baby 24 hours a day and that psychological support is available whilst their baby is on the unit.

Healthcare professionals (such as specialist neonatal nurses, specialist neonatal consultants and other paediatric specialists working with babies born preterm) engage with parents or carers to ensure they are provided with all the necessary information to help them understand their baby's condition and management and to make informed decisions about their baby's care. This includes providing support and guidance for parents or carers, making them aware of psychological support that is available, providing constructive and supportive feedback about how to care for their baby and, if their baby is being discharged on respiratory support, support to use specialist equipment at home.

Commissioners (such as clinical commissioning groups and NHS England) ensure that they commission services that help parents or carers to be involved in their baby's care.

Parents or carers of preterm babies having help with their breathing in hospital are helped by their healthcare professionals to care for their baby. They have access to their baby 24 hours a day and are involved in ward rounds and in the planning of their baby's care. They are helped to be confident to provide their baby's day-to-day care, for example feeding and nappy changing and, if their baby is being discharged on respiratory support, are supported to use specialist equipment at home. They are also made aware of the psychological support that is available to them.

Source guidance

Specialist neonatal respiratory care in babies born preterm (2019) NICE guideline NG124, recommendations 1.6.5, 1.6.7 and 1.6.8.

Definitions of terms used in this quality statement

Help to care for their baby

Parents or carers are involved in planning and providing their baby's day-to-day care, for example, feeding and nappy changing. They are encouraged and supported to participate in discussions and decisions about their baby during ward rounds, providing input into planning care. They are given constructive and supportive feedback about how to care for their baby and, if their baby is being discharged on respiratory support, how to use specialist equipment at home. [NICE's guideline on Specialist neonatal respiratory care for babies born preterm, recommendations 1.6.5 and 1.7.4 and expert opinion]

Equality and diversity considerations

Parents or carers should have access to an interpreter or advocate if needed.

Parents who are very young or parents who have special educational needs my need additional support when their baby is being cared for. Healthcare professionals should discuss any additional support they need with them, for example involving other members of their family or their social and support workers.

It may be difficult for some parents or carers to visit every day and be involved in their baby's care because of the costs of travelling to the unit, accommodation nearby if needed and subsistence. These parents or carers should be advised of any support available to them on admission to the neonatal unit, including the availability of accommodation and support with subsistence costs. This may be available directly through the neonatal unit or through charities. Healthcare professionals should continue to involve them in their baby's care as much as possible.