“Giving us hope”: Parent and neonatal staff views and expectations of a planned family‐centred discharge process (Train‐to‐Home)

Abstract Background Preparing families and preterm infants for discharge is relatively unstructured in many UK neonatal units (NNUs). Family‐centred neonatal care and discharge planning are recommended but variable. Design and participants Qualitative interviews with 37 parents of infants in NNUs, and 18 nursing staff and 5 neonatal consultants explored their views of discharge planning and perceptions of a planned family‐centred discharge process (Train‐to‐Home). Train‐to‐Home facilitates communication between staff and parents throughout the neonatal stay, using a laminated train and parent booklets. Results Parents were overwhelmingly positive about Train‐to‐Home. They described being given hope, feeling in control and having something visual to show their baby's progress. They reported positive involvement of fathers and families, how predicted discharge dates helped them prepare for home and ways staff engaged with Train‐to‐Home when communicating with them. Nursing staff reactions were mixed—some were uncertain about when to use it, but found the visual images powerful. Medical staff in all NNUs were positive about the intervention recognizing that it helped in communicating better with parents. Conclusions Using a parent‐centred approach to communication and informing parents about the needs and progress of their preterm infant in hospital is welcomed by parents and many staff. This approach meets the recommended prioritization of family‐centred care for such families. Predicted discharge dates helped parents prepare for home, and the ways staff engaged with Train‐to‐Home when communicating with them helped them feel more confident as well as having something visual to show their baby's progress.

of shorter hospital stays and earlier discharge home due to neonatal care improvements. Discharging babies before EDD commonly leaves parents feeling unprepared and lacking confidence. 1-3

| The importance of involving parents in discharge planning
Department of Health Neonatal Toolkit documents 4 and NICE guidance 5 emphasize family-centred neonatal care, but there is considerable variation in UK NNU family-centred care, which affects family NNU experiences. 6 Evidence of NNU family-centred care practice is limited despite the importance of staff-mother interactions in facilitating mothers as main caregivers. 7,8 Transition from hospital to home involves a complex process of adaptation by parents and multidisciplinary approaches to families. 9 Key elements include discharge planning and the way discharge and adjustment to home takes place, especially when vulnerable babies have been very sick.

| Parental confidence
Parents in NNUs focus on discharge, and the care and skills needed to facilitate this. Stress and anxiety reduce their ability to absorb and retain complex changing messages from neonatal staff. Early practical involvement in baby care increases parental confidence and competence, and willingness to take responsibility for care. 3 North American work on early educational interventions for parents in NNUs indicates enhanced parent-infant interactions and length-of-stay reductions. 10 Parents' concerns change in moving from hospital to home and include uncertainty about parenting competence, breast-feeding proficiency and losing care from neonatal staff. 2,11,12 Involving parents in discharge planning develops confidence in parenting abilities at home. 9 Timely discharge information and early anticipatory guidance helps build confidence and role efficacy as discharge approaches. 2

| Developing parent-oriented approaches to infant discharge planning from NNUs
Parental self-efficacy and competence are moderated by parent knowledge of development and parenting stress. 13,14 Maternal efficacy beliefs mediate the effects of depression, social support and infant temperament on parenting behaviours. 15 Self-efficacy tools based on Bandura's Social Learning Theory can indicate the level of belief and confidence people have about their ability to plan and carry out specific tasks [16][17][18] McMaster NNU, Canada, developed an interactive discharge planning tool to achieve timely transfers between various levels of neonatal care and encourage parental engagement. 19 From this, we developed a UK neonatal planning package (Train-to-Home) to improve parents' preparedness and confidence for discharge. Train-to-Home is parent centred and aims to facilitate communication between staff and parents throughout their stay, encouraging early parental involvement in care and developing their understanding of their baby's needs, and provides a realistic estimated baby discharge date soon after admission. It comprises a laminated baby's train graphic for the baby's cot and gestational age appropriate parent booklets. Train-to-Home was introduced in four local neonatal units (LNUs) across South West England in 2013. A previous paper reports the wider study findings; 20 we present here qualitative data comparing parental and neonatal staff perceptions and experiences of using Train-to-Home.

| METHODS
The main study recruited infants without major anomalies born at 27-33 weeks' gestation over two 11 month periods before and after introducing Train-to-Home. LNU nurses sought parental assent to take part and consent was gained by a study researcher.

| Parent interviews
Parents who agreed to further contact were telephoned two months after discharge and invited to participate in a semi-structured telephone interview at a time of their choice. We noted the proportions of infant gestational ages, maternal ages and parity in each LNU by phase recruited to the main study and purposively sampled similar proportions for the interviews to reflect the main sample characteristics and achieve a maximum variation sample. Participants varying by ethnicity, socioeconomic status, age and parity, with babies of different gestational ages, and from singleton and multiple births were interviewed.
An interview topic guide was developed with the project Parent Advisory Group, using literature and insights from study management team meetings. Some parents were interviewed before Train-to-Home was introduced (Phase 1) and others after its introduction (Phase 2).
The guide covered practical and emotional readiness for discharge and staff roles. Attitudes and experiences of Train-to-Home were also explored in Phase 2.
Parent interviews were audio-recorded and transcribed verbatim.
NVivo (QSR International Pty Ltd, Victoria, Australia 2010) was used to support thematic analysis using constant comparative techniques to test emerging themes in subsequent interviews. 21 To ensure validity of the analysis, two researchers read and re-read the transcripts and interview notes, coding and identifying themes, with two other researchers independently checking and agreeing the themes identified on a sub sample of the data. Descriptive accounts were produced, and theoretical explanations for behaviours, opinions and decisions were developed.

| Nursing and medical staff focus groups/ interviews
After family recruitment was completed, nursing staff focus groups were arranged in each LNU to explore Train-to-Home use. Timings were agreed with managers to fit staff rotas. One-to-one interviews were arranged for staff unable to attend the groups. A senior researcher conducted short telephone interviews with consultant neonatologists from each LNU. Staff focus groups/interviews were similarly audio-recorded, transcribed and analysed thematically. Similar checks on coding and identification of emerging theme ensured analysis validity and enhanced rigour.
The descriptive accounts and themes were compared using a framework approach in reviewing parents', nurses' and doctors' perspectives. 22,23 The themes generated were presented, discussed and endorsed by the study Parent Advisory Group members.
Research ethics approval was given by the NRES Committee London-City & East in June 2012: 12/LO/0944.

| RESULTS
Altogether 245 families participated in the main study (Phase 1-128 families, Phase 2-117). Despite a lack of measurable change in parental self-efficacy scores at discharge with the intervention, postdischarge emergency department (ED) visits fell with a significant reduction in associated post-discharge health-care costs.

| Interview participants
Thirty-seven telephone interviews lasting 30-60 minutes were conducted with parents (Phase 1-16, Phase 2-21). Fathers participated in three interviews where both parents contributed to discussions.
Babies' gestational ages at birth spanned 27-33 weeks. Some parents had twins, and both first time and subsequent parents were represented from all LNUs. Mothers' median age was 32 years and half had male children.
Eighteen nursing staff (two managers, seven sisters, four staff nurses, two health-care assistants and three nursery nurses) were interviewed face-to-face across the LNUs in groups of three or four, plus a few one-to-one. Telephone interviews were held with five neonatal consultants from the four LNUs. The focus groups and interviews captured staff views about Train-to-Home materials and how they were used. Quotations are attributed to LNUs to preserve anonymity.
Interviews and group duration varied from 30-60 minutes.

| Preparation for discharge home (Phase 1)
Overarching themes arising from parents', nursing staff and doctors' interviews are summarized in Table 1, grouped as "practical preparation," "emotional preparation" and "role of feeding." The illustrative quotes are from Phase 1 parents.
Parents described their LNU experience as a roller-coaster emotional journey, where they learnt a great deal, established relationships with nurses and received support. Overall, they felt prepared practically for discharge, but expressed concerns about not having a discharge date or discussions about discharge. There was emotional uncertainty about discharge, and some wanted more reassurance. Breastfeeding was often experienced as difficult and getting it right could delay discharge. Nursing staff focused on babies maintaining their temperature, gaining weight and feeding well before they could be discharged.
Doctors concentrated on the need for early discharge planning.

| Practical preparation: "knowledge and skills transfer, but not enough notice"
Nurses worked with parents in supporting readiness for baby discharge. Parents said the knowledge gained prepared them practically and most recalled the practical skills they had learnt. Systematic information delivery using checklists or parent packs was not mentioned and the processes seemed reactive not proactive. Mothers expressed concern about lack of discharge notice, not having a date or structured, meaningful discharge discussions. They had difficulty alerting family members about imminent departure and making family arrangements.
It was all very quick in the end. … we didn't really talk about going home and then all of a sudden it was, "Let's try demand feeding. You could go home in two days"..very, very sudden.

| Emotional preparation: "uncertainty, feeling rushed, motivation to get home"
Mothers described simultaneously feeling "scared," "nervous" and "excited" about discharge. Some felt unsupported and needed more reassurance. Fear and concern about taking home a "tiny baby" was raised by a small number of mothers, but this was overcome by desire to have the family at home.

| Preparing parents to take their baby home-"gaining weight, feeding and maintaining temperature"
Nursing staff perceived parents' main issues were babies gaining weight, feeding well (particularly if breastfed) and maintaining their temperature. They spoke about parents worrying about coping and fearing discharge. They talked about using due date as a guide and advising parents that 37 weeks of gestation is more realistic.
We used to say that babies go home about their due date and anything before is a bonus. Now we tend to say…it will probably be between 37 and 38 weeks in most cases. The focus here would be to get them to establish breastfeeding.
(Manager, unit 1) There is a perceived feeling that if they bottle feed they will get home quicker. For a Mum who is breastfeeding they get frustrated with that last hurdle and they will switch to bottle if most of the others around them are bottle feeding.
(Health-care assistant unit 1) All the consultants took a more top-down approach and focused on the need to find better ways of planning for discharge and communicating this to parents.
There is real value in the process of thinking clearly about discharge planning; we need to do more work on improving information exchange and supporting parents.

| Preparation for discharge home: using Train-to-Home (Phase 2)
Train-to-Home was introduced, and the baby's train was displayed on the cot with coloured stickers (red-yellow-green) indicating the stage of preparedness for discharge home (see Figure 1). 20  Parents were overwhelmingly positive about Train-to-Home.
Mothers, fathers and siblings found the visual representation of baby progress helpful and enjoyable. Negative or critical comments focused on nursing staff attitudes, confused messages and misunderstanding or non-engagement with the package (Figure 1).
Nursing and medical staff agreed that the intervention materials' visual nature helped in explaining baby progress to parents, but nursing staff views varied. Doctors reported improved communication with parents, and some nurses said it allowed them to sit and talk with parents about how their baby might progress and baby's developmental changes and needs.
Using a similar framework (Table 2), we compared views about who should use Train-to-Home, when it should be used, people's reactions and its content/function.

| Who should use it?-parents, staff and others
Parent themes illustrate their view that staff needed to be engaged with the process, but fathers and families could also be involved.

Early planning for discharge
Train-to-Home dates were usually changed after discussions with medical staff. Nurses in three LNUs struggled to explain the dates to parents, but nurses in the fourth LNU used the changing dates and window colours to talk with parents about how their baby was progressing. More guidance on changing dates was suggested and some nurses felt this was not their role. Others relied on shared discussion, emphasizing the tentativeness of initial dates and flexibility of response to events that might change discharge timing.
We change the dates in discussion with the doctors. For medical staff, the intervention provided a focal point from which to start discharge planning starting with LNU admission, but they highlighted difficulties in embedding Train-to-Home.
The idea was very good, it "normalised" the process of going home from early in the hospital stay.

(Doctor Unit 3)
There was real value in the process of thinking clearly about discharge planning; we need to do more work on improving information exchange and supporting parents.
….It was very difficult to get nurses to "buy in" to the process-they thought it was "too simplistic." (Doctor Unit 1)

| When should it be introduced?
"The dates prepare you for going home" so "Do it right at the beginning" Parents talked about the usefulness of preparing for discharge by having a date to work towards. Doctors talked about the difficulty in embedding the intervention in current practice and culture and nurses' responses, in contrast to the usefulness of using it with parents.
When one or two babies took longer to be ready for home than our initial estimate the nurses became very hostile about the estimates-said they were "too optimistic" (Doctor, unit 1) The process did however unmask some "chain of command"

problems-some nurses felt very negative about it and we
were "too democratic" about how we implemented this.

Improving communication with parents
A positive view about early introduction of Train-to-Home was evident among medical staff.

"Giving us hope" and "Feeling in control"
Using Train-to-Home, changing train stickers from red, through yellow to green gave parents the sense of moving forwards and being on a real journey home. This included feeling hopeful and more in control.
In an environment marked by their lack of choice and control, this apparently simple intervention improved things.

Giving discharge dates is difficult
The difficulty of breaking bad news and wanting to protect parents from disappointment came through in nurses' comments, and this was reinforced by doctors' responses.
When they don't reach those dates or you change the dates then they get quite disappointed.
(Neonatal sister Unit 1) So once you start writing the date on there then the parents are like glued to that date, and it's a bit difficult to then try and move it.

(Staff nurse Unit 2)
Nurses did not like having to give parents the "bad news" that their baby would be in hospital longer than the initial estimated date.

| Practical preparation-What is included and what does it do?
Some parents took more ownership of "Train-to-Home" and associated discharge planning processes and explained it to their wider families. The traffic light system of colours provided an "at-a-glance" affirmation that their baby's health was improving. However, a few reported that nursing staff handed over train maintenance responsibility, but did not give them enough information to use it correctly.
Consequently, stickers were not updated as parents did not understand the basis on which to change them.

Getting to know your baby
Many parents used the booklet and some added comments or observations. They enjoyed using it and found the questions helpful.
Mothers and fathers found it facilitated engagement and understanding, helping them to ask questions.

| DISCUSSION
Parents interviewed before introducing the intervention expressed concerns about the uncertainties associated with hospital discharge.
After Train-to-Home was introduced, interviewees were overwhelmingly positive. Despite the rhetoric about family-centred NNU care and planning for discharge, 1,4,5 these processes remain reactive and poorly planned. 6,7 A study in NICUs in England showed that mothers did not report positive family-centred practices. 7 Mothers experienced role uncertainty or ambiguity and were acutely sensitive to care inconsistencies. 7 To minimize this, staff-parent interactions must be improved and mothers' and fathers' opportunities to be main caregivers facilitated. 7 Our study implemented a family-centred care package, and where staff adopted it, changes in parental confidence in caring for their baby were seen when they left the NNU and particularly in the following weeks. 20 Maternal self-efficacy studies have explored the associations with later maternal behaviour. 15,25 Our study measured maternal self-efficacy, and parents reported feeling more confident and better informed about caring for their babies after Train-to-Home was introduced. 20 They very clearly welcomed partnership working with professionals and needed realistic information about a likely discharge date. Shared discussions of problems and questions that might arise at each stage of their baby's pathway through the NNU were positive and helpful.
Attempts to change NNU communication practices should involve parents as change agents as they will engage positively and enthusiastically contribute their experiences even at times of extreme emotional stress and rapid change. Although fathers were much less involved with data collection in this study than mothers, they and the wider family are important and should not be ignored.

| Study strengths and limitations
Participating families showed high levels of engagement and commitment to the main study and the qualitative component, despite having very young preterm infants and being under considerable stress.
Interviews were representative of the population who took part in the wider study. 20 Recruitment of families from more-deprived groups was lower than from less-deprived groups in common with studies involving families from wide socioeconomic backgrounds.
More time was probably needed to embed and normalize Trainto-Home into each LNU as some staff were uncertain about using the package. Medical staff supported Train-to-Home's underpinning principles; however, they identified some nursing staff's reluctance to engage fully and were therefore unwilling to promote the intervention to unenthusiastic nurses.

| CONCLUSIONS
Using a parent-centred approach to communication and informing parents about the needs and progress of their preterm infant in hospital is both practical and welcomed by parents and many staff. This approach meets the recommended prioritization of family-centred care for such families. The predicted discharge dates helped parents prepare for home and the ways that staff engaged with Train-to-Home when communicating with them helped them feel more confident, as well as having something visual to show their baby's progress.