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Abstract
Objective To assess how UK neonatal units address parent communication, support and information needs during neonatal care and the early months after discharge.
Design All units were invited to participate in a survey of practice and policy relating to the needs of parents with babies admitted for neonatal care.
Setting Neonatal care, UK.
Main Outcome Measures Proportions of units by unit level providing specific facilities, information, policies and support mechanisms.
Results Facilities, information and support for parents vary and can be quite limited: units may have as many as 10 babies receiving intensive or high dependency care in one room; 24% have no rooms in which to accommodate one or two babies only; 96% have at least one room for parents to stay overnight, 27% of rooms have ensuite amenities; 72% have written information about the equipment used, 64 % on ventilation and 91% on breastfeeding; parents have free access to notes in 20% of units and in 14% parents are excluded from ward rounds; 27% have a policy on keeping in contact with parents, 47% did not have the services of a social worker, psychologist, counsellor or psychiatrist and only 15% have a unit-based family care nurse.
Conclusions Elements of unit policy and practice that support family-centred care are variably in place currently and units need to address the gaps.
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Infants are admitted to neonatal units (NNU) for specialist care, provided by trained professionals, utilising advanced medical technology. While advances have progressively reduced neonatal morbidity and mortality, less attention has been directed at meeting the psychosocial needs of infant and families. Parents are exposed to many stressors and negative emotions, including anxiety, guilt and helplessness.1 This ‘emotional chaos’ is compounded by separation, limited participation in decision-making, disrupted parental role acquisition and constrained parent–infant interaction.2 3 The impact of these experiences can persist beyond the NNU and contribute to difficulties with parenting and family functioning.4 5
More recently, parent-focused care and family-centred services have become broadly accepted concepts in neonatal and paediatric intensive care, and professional organisations promote family-centred principles as standard.6 7 The crucial needs of neonatal intensive care unit parents have been identified: accurate information; inclusion in care; parent–infant contact; individualised care and a positive relationship with staff.4 In meeting these, four components were identified: a welcoming environment with supportive policies; emotional support; parent empowerment and parent education.
What is already known on this topic
▶. Facilities, support and information available to parents affects their experience of neonatal care.
▶. Family-centred care approaches are valuable in terms of a range of infant and parent outcomes.
What this study adds
▶. There is substantial variation within and across the different types of neonatal unit in the indicators for family-centred care.
▶. The data provide a baseline for comparison as improvements are introduced and care is reconfigured.
Objectives
As part of a larger project on the communication, support and information needs of parents we asked these questions:
(1). What facilities are provided in NNU?
(2). What information is provided and how is it communicated to parents?
(3). What policies are there aimed at supporting parents and addressing their needs?
Methods
All UK NNU managers were invited to participate in an on-line survey. Non-responding units were contacted by telephone and by network managers. Data were returned between November 2007 and April 2008. Unit categorisation was based on established definitions.8 9 Using SPSS version 15.0, descriptive statistics were calculated by unit level, and proportions compared. Statistical significance was taken at p<0.05. Ethics committee approval was not required.
Results
The response rate was 72% (153 units): 20% (n=31) were level 1, 33% (n=50) level 2 and 47% (n=72) level 3. The distribution of units by level did not differ significantly between respondent and non-respondent units.
Arrangements of rooms and cots varies across NNU level (table 1). Five units have 10 intensive or high dependency cots in one room, less than half (n=63) have single baby rooms, 25% (n=38) have rooms for two babies and 24% (n=37) have no rooms for one or two babies.
Arrangement of rooms and cots
Almost all units (96%, n=147) have one or more overnight rooms, of which 51% have been upgraded in the past 3 years (table 2). Some (11%) were upgraded more than 10 years previously.
Proportion of units (%) with facilities for parents and families
General policies relating to parents, for example on visiting, were common compared with those relating to specific groups of parents (table 3). Policies on information-giving varied; in 86% of units parents are present during ward rounds, 47% for complete rounds and 39% only when their baby is discussed; in 6% parents receive written summaries about their baby and in 20% there is free access to infants' notes. In addition to face-to-face communication, other methods include: dedicated phone lines (61%); websites with individual log-in options (9%) and communication sheets and diaries to which staff and parents contribute. A majority of units provide written material on specific conditions or aspects of clinical care (table 4). Few have information on parental reactions to preterm birth. For discharge home information is commonly provided on safety, home oxygen and resuscitation and less so on nutrition, preterm infant development or recognising when a baby is unwell.
Proportion of units (%) with policies relating to parents
Sources and types of information available for parents in the NNU
A third of units (37%) have some material in other languages and 85% have interpreters available according to the local population needs. Many use generic information on breastfeeding, feed preparation, cot death prevention, neonatal screening and safety. None mentioned general aspects of neonatal care, preterm birth, behaviour and development.
Additional staff provide specialist clinical services, although provision of psychosocial support for parents is less evident (table 5). Nearly half of units (47%) do not have the services of a social worker, psychiatrist, psychologist or counsellor and only 15% have a specialist family care nurse. Only 50% of units have a parents' group, and relatively few have parent-to-parent schemes.
Proportion of units (%) with parent support mechanisms and staff
For bereaved parents 94% of units reported policies in place: follow-up and support by a consultant neonatologist or paediatrician, with other staff as appropriate; half (48%) had written information and provided examples of individualised care and support measures (53%).
Discussion
The birth of a preterm or sick infant creates extraordinary life situations for mothers and fathers, in which parenting develops in unfamiliar settings governed by medical and technological practices.2 Parental role attainment is dependent on a facilitative, dynamic culture, key elements of which are facilities enabling parents to feel valued, processes that facilitate parental competence and supportive staff.4
The effectiveness of care involving parents is dependent on unit layout and organisation. Space, comfort and privacy are significant issues.10 The primary goal is a unit that can function flexibly at the designated level.11 Variation in numbers and organisation of rooms reflects the level and size of unit, philosophy of care, activity, staffing, specialist facilities and local history. The importance for parents of being near their infant is recognised, and our survey suggests efforts have been made to address this need by providing comfort and privacy, facilities for siblings and rooms for overnight stays.12 13 Being able to sit comfortably with their babies is important for recently delivered mothers and for parents spending long periods of time in a unit. In a largely public environment, mothers describe how they create private space near their baby, separating themselves from unit activity.2 Sitting rooms are essential, helping to alleviate loneliness, encouraging visiting and facilitating the sharing of experience.2 For parents with other children play areas and toy boxes recognise family needs and facilitate visiting.14 A component of family-centred care involves promoting parent–infant relationships,15 and having parent rooms near the unit supports this, while conversely, a lack of facilities may contribute to parents feeling unimportant.2 Almost all units have rooms in which parents can stay; however, many have inadequate facilities.
Parents describe their experience in the neonatal intensive care unit as a progression from being ‘watchers’, to ‘learners’, then ‘doers’ as they are encouraged and empowered to care for their baby.2 Along this trajectory information needs vary.4 16,–,18 While much is available on, for example, breastfeeding and infection control, more is required about experiencing preterm birth, preterm behaviour and pain management. Similarly, in preparation for discharge home, information is available on home oxygen, resuscitation and safety and less so on nutrition, preterm infant development, or recognising when a baby is unwell.
Timely and appropriate communication processes can alleviate stress, increase understanding of care and progress and enable participation in decision-making.4 Units tend to have parents present for all or part of ward rounds, however, talking and listening to individual parents may be more effective in promoting shared decision-making and in reducing unrealistic expectations, uncertainty or conflict.19 Other communication methods reported to help include diaries, dedicated phone lines and web-based programmes.20,–,24
In addition to providing clinical care and improving the physical environment, facilitating family-focused care, effective early parenting and infant care requires support mechanisms and staff responsive to parental needs.2 15 20 25 Processes addressing the emotional needs of parents are relatively meagre in UK units, and policies relating to the needs of different groups of parents were infrequently reported. In acknowledging the higher risks and higher rates of neonatal mortality and morbidity associated with some of these groups, the lack of policies for these parents is salient.26 27 Measures of family-centredness include the availability of specialist staff to address parents' short-term psychosocial needs and parent groups that can provide informational and emotional support.25 28,–,30 Through the neonatal course, parents may require staff help in relation to infant contact and care,3 4 particularly with ‘kangaroo care’ and breastmilk expression and feeding, although this is not always available.31 32 Another indicator of family-centredness is preparation for discharge home. Some parents continue to have difficulties relating to their baby, lack confidence, have poorer care-giving skills and provide a less appropriate home environment.33 Adequate discharge planning is reflected in unit-based family care nurses, follow-up arrangements and outreach discharge programmes such as home visiting schemes, which can improve confidence, coping and infant care.4 34
The survey reflected issues identified by user groups and published literature on unit practices, policies and facilities.16 17 In focusing on these we acknowledge the significance of other issues, such as parent–staff relationships and the value of data on individual parents and staff.3 20 35 36
Conclusions
In neonatal care there is a unique opportunity to assist parents and families in initiating and developing ‘normal’ parent and family roles. Neonatal environments must have adequate facilities, policies and infrastructure conducive to the needs of infants and families. Our survey indicates considerable variation in the family-centredness of UK units, largely unrelated to size or the type of care provided. In more vigorously addressing the needs of parents, the development of a range of parent-friendly policies, alongside increased support strategies, may contribute to a more positive neonatal experience for parents and families.
References
Footnotes
↵* For members of the POPPY Project Research Team see end of the paper.
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POPPY Project Research Team S Staniszewska (Principal investigator), J Brett, M E Redshaw, K E StC Hamilton; POPPY Steering group: M Newburn (Chair), L Taylor, N Jones, C Pym, A Cole, J Brett, S Staniszewska, M E Redshaw; POPPY Advisory Group: P Brocklehurst (Chair), L Taylor, S Marshall, Y Richens, J Hawthorne, G Gyte, S Thornton, D Bick, C Bennett, N Crichton, M Harvey, P Goodyear.
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Funding This study received funding from the Big Lottery Fund.
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Competing interests None.
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Provenance and peer review Not commissioned; externally peer reviewed.