Health Business - Family-centred care

Family-centred care

Recent research by POPPY, the Parents of Premature Babies Project, calls for a new approach to neonatal care in the UK

The quality of care for premature babies in neonatal units in the UK is very high, but there has been concern that in some units the medical treatment is the central focus of care and the emotional and social needs of the baby and their parents can be overlooked.

New research released by POPPY (Parents of Premature Babies Project) highlights these concerns and raises the importance of family-centred care. POPPY is a collaboration between the University of Warwick, Royal College of Nursing Research Institute, NCT – National Childbirth Trust, Bliss and the National Perinatal Epidemiology Unit, and was funded by the Big Lottery Fund.

Recognising parents’ needs
The POPPY research identified effective ways for health professionals to communicate and provide information and support to parents of a premature baby, to meet their needs and those of their baby.

Providing family-centred care means that health professionals must:

recognise and value parents as being at the centre of the care process for their baby
respond to parents’ emotional, social and information needs by communicating clearly and seeking informed consent for any treatment
show parents how they can care for their baby, and encourage them as they gradually become the main carers.

The three-year POPPY research project involved a survey of UK neonatal units, interviews with pre-term parents and a systematic review of previous research findings. POPPY found that providing information and support for parents, and increasing parents’ involvement in their babies’ care, can have a significant impact on parents’ confidence, their parenting behaviour and the wellbeing of the family.

The need for space
Results of the neonatal survey showed that there was limited availability of separate rooms where parents can care for their baby. It was found that 25 per cent of units do not have this facility, which is particularly important for parents caring for twins, for babies needing barrier nursing and for parents to use when preparing to take their baby home. The survey also found that 10 per cent of units did not have a parent sitting room close to clinical areas. Providing a space for parents to relax in, close to their premature or sick baby is highly important for parental well-being, encouraging regular visiting and frequent contact.

POPPY found that in general, information-giving was good, with 90 per cent of units providing literature and photographs to parents. Most units were able to offer parents the opportunity to visit the neonatal unit in advance, when it was known that the baby would be born pre-term. A smaller percentage of units provided more in-depth, topic specific information on areas such as ventilation and tube feeding. Some units provided information about after-care although this was not consistent across all units.

Different families have different needs. So a range of policies and information materials are needed, tailored to different circumstances. Less than 20 per cent of units said they had written policies about working with parents of twins, teenage parents, ethnic minority or disabled mothers, whilst two thirds had policies specifically for parents who misuse substances. The POPPY report highlights the need to bridge these gaps in care, reduce variations in policies and practice and improve quality.

The survey also found that only half of the units surveyed had a parents’ group and only a third had a one-to-one parent support scheme. Moreover just 16 per cent had a specialist family care nurse.

The POPPY project offers practical guidance for health professionals to identify parents’ needs and help them to be involved in their baby’s care. The project highlights a range of good practices in many neonatal units and calls for all units to review their current provision and take steps to provide comprehensive family centred care

Family-centred care involves health professionals actively considering how it feels for parents to have a premature or sick baby and working within a framework to improve their experience. It can be shocking for parents to see their baby in an incubator for the first time, so they will need support on touching and holding their babies, talking, feeding, changing nappies and when they can hold their baby skin-to-skin. All units should be in a position to consider what they can do to increase parents’ involvement with their baby.

Involving parents
There is also promising evidence that improved communication and involvement of parents in their baby’s care is of benefit to babies and welcomed by parents. It promotes positive parent-child interaction and wellbeing and can reduce the length of stay of pre-term babies in the unit, the need for re-hospitalisation and long-term morbidity.

Professionals can involve parents in many ways including:

showing them how to hold their baby skin-to-skin from the very earliest days, unless specifically contra-indicated
encouraging mothers to express their breastmilk, providing an electric breastpump in pleasant, private surroundings, as close to the baby as possible and offering continuing guidance and support with breastfeeding
explaining their baby’s condition with regular written as well as verbal updates
videoing consultations and giving the parents access on-line or a DVD to keep
explaining about their baby’s developmental needs and behavioural cues.

Sophie Staniszewska, principal researcher on POPPY, said: “When babies are too small or too sick it is sometimes the case that medical treatment is the central focus of care and the emotional and social needs of babies and their parents can be overlooked. Family-centred care helps to safeguard the wellbeing of the whole family in challenging circumstances, aiming to enable them to enjoy a family life from the earliest days.”

Bliss chief executive Andy Cole says: “While babies are the main priority for health professionals in a neonatal unit, it is extremely important not to forget the needs of parents and the positive impact that they can have on the care of their baby too. This project highlights the importance of effective communication and support for families and that services both in hospital and at home should take full account of their individual needs at what can be a very uncertain and stressful time. Parents must feel confident and supported to provide the best possible care to their vulnerable baby.”

NCT head of Research and Information, Mary Newburn, said: “The POPPY project is addressing the feelings of stress, isolation and powerlessness that so many parents of premature babies feel and it offers solutions to counteract this.

“The POPPY project recommends that all neonatal units provide family-centred care and has developed a range of materials to help make this easier. In essence, POPPY wants all health professionals to recognise and value parents as being at the centre of the care process for their baby.”

All neonatal units across the UK have been sent a range of materials, devised by POPPY, to help implement family-centred care including: a booklet of parents views which explores stressful experiences and emotional needs, a poster and an easy-to-read leaflet for parents promoting skin-to-skin care, available in English, Polish, Urdu, French and Portuguese.

For more information
More information on POPPY is available at www.poppy-project.org.uk

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