Data collection

The research team were ‘blinded’ to the selection of participants, with information about the research being disseminated by a third party. Once ethical approval had been granted, the coordinator of an NHS trust-based parent support group, located in south east England, liaised with parents and invited them to participate in the study. Details of interested participants were forwarded to the research team and a mutually convenient date and time was arranged to conduct a semi-structured interview with the parent(s) in their own home. Interviews with seven participants were undertaken between September and November 2017 and lasted between 46 and 72 minutes. To gain further insight, secondary data analysis was undertaken on another seven transcripts that had been generated after interviews with parents, also in their own homes, between February 2016 and January 2017. These interviews lasted between 60 and 110 minutes and focused on the parent’s story about having a premature baby (Petty 2017).

Data analysis

While the constant comparative analysis method is central to grounded theory (Glaser and Strauss 1967, Strauss 1987, Glaser 1992), it is also fundamental to other areas of qualitative research (Hewitt-Taylor 2001, Boeije 2002), with coding being key to the process (Offredy and Vickers 2010). Boeije (2002) suggests that there are potentially five different levels of comparison. This study involved three of them:

The three stages of coding identified by Strauss and Corbin (1998) – open, axial and selective – were drawn on to facilitate the analysis of the interview transcripts and the emergence of the themes. All data analysis was undertaken by the same member of the research team and then independently verified by another.

Ethical considerations

Ethical approval for the study was granted by the Health Research Authority (Research Ethics Committee Reference 17/YH/0161), as well as the University of Hertfordshire for the secondary data analysis. Written consent was obtained before the interviews, and all were digitally recorded and were undertaken by the same researcher to maintain consistency.

Emotional and mental health of parents

Participants expressed mixed feelings about going home with their babies. Some felt joy and excitement while others expressed nervousness and fear at the thought of caring for their babies alone, away from the support pillars of the NICU. Some participants said they had simultaneous positive and negative feelings:

‘Suddenly you are alone… it felt good to bring him home, of course that is what anyone wants, but it was nerve-racking’ (interview 5).

‘Even though we wanted to come home… then you think your world falls apart really. Things are a lot harder to deal with, things that you would normally be okay with’ (secondary data 2).

Even if discharge preparation was deemed to be good, a consistent finding throughout the interviews was the emotional effect of the experience at home. Reports of intense emotional reactions were evident, which continued into the first few years after discharge:

‘It has been a huge emotional upheaval… you cannot ignore it or dismiss it… The emotional support and understanding of what that person has been through needs attention’ (interview 2).

‘I was experiencing anxiety and panic attacks… it was quite an overwhelming situation of bringing him home’ (interview 4).

‘I had this really strange turn… diagnosed with post-traumatic stress, and that was a year down the line’ (secondary data 3).

Participants reported a state of hypervigilance, a feeling of not being able to leave their baby, hindering opportunities to socialise:

‘So coming home there was the constant fear that something was going to happen to him… not sleeping and watching him constantly and checking him every three hours’ (interview 1).

‘It was not until she was four months that I began to kind of relax a bit and actually take her out and start doing things’ (interview 3).

In addition, participants talked about a sense of relief in being able to finally care for their baby – it had been like a form of ‘suspended parenting’, attributed by some to lack of early bonding. They also often found that suddenly having to care for their baby alone was a daunting experience:

‘I do feel if… in that first month you have been separated from your mother and you are nursed in a tiny box and people do horrible things to you, I think it must have an effect’ (secondary data 6).

‘Once I came home we were kind of left on our own… you have spent so much time in a unit where you feel like you are borrowing your own baby… but then you have gone from that where you kind of feel like you have to ask for permission to hold your baby… to being at home’ (interview 7).

Uncertain outcomes

Brain injury and/or bleeds and the potential effect of these on the babies’ future were a concern for some participants. The uncertainty of the outcome was a cause of anxiety adding to the emotional challenges already highlighted:

‘It is horrible being scared to death… it is devastating them saying “He might have to have a shunt, he might have brain damage” all those things, horrible, horrible’ (interview 5).

‘I still do not know why it happened… Would we end up with a disabled child?’ (secondary data 1).

Ongoing health needs of the baby

Continuing health issues were reported in all of the interviews, especially relating to gastrooesophageal reflux and chronic lung problems. Rehospitalisations for these problems occurred for most participants and frequent follow-up appointments also presented challenges including practical and financial difficulties, placing an extra strain on their emotional well-being:

‘The first year I found hard because I had postnatal depression and he had very severe reflux, so we had quite a difficult first year’ (interview 4).

‘We were probably up the hospital every week… then at least one appointment every fortnight… it is not only expensive but that is a lot of appointments to cope with’ (interview 1).

Education needs of health professionals

Community health professionals were perceived to lack knowledge about caring for parents of premature babies. The participants felt there needed to be more focused training and knowledge about the specific differences and needs of premature babies so they could be better supported in the community:

‘I would like to see better parent support from GPs, from consultants, from health visitors, a better understanding’ (interview 2).

‘There is a real lack of understanding about premature babies out there’ (secondary data 2).

Parental support and preparation for transition home

Preparation for discharge by the neonatal staff was deemed to be appropriate. In fact, neonatal staff were praised and highly valued. A range of strategies were used to prepare participants to care for their baby at home, including resuscitation training, parentcraft and the opportunity to stay with their babies overnight.

Exceptions to the many positive reports of good preparation came from those who thought that it was too late or was rushed, making them feel unprepared for the transition home. Even those who regarded the preparation as good felt they needed continuing support services. The emotional effects of going home were, for example, reflected in the counselling services used by some participants:

‘I had counselling to talk about what had happened to try and help with the anxiety and panic attacks… we were going through what happened bit by bit and kind of breaking down how I feel about it’ (interview 4).

‘I went into a bit of a depression… it was not postnatal depression as such, more the effect of everything… they were really supportive, got me some counselling, so that was good’ (interview 6).

Participants stressed the importance of assistance from other parents during difficult times in making them feel less isolated and serving as a source of emotional peer support after discharge. Some also recognised that giving birth prematurely prevented them from joining peer groups attended by parents with healthy, full-term babies:

‘There is this thing about feeling institutionalised and sometimes a feeling of isolation. We had missed out on all that National Childbirth Trust and so on… It is a whole set of people that I have not had that journey with’ (secondary data 5).

Finally, one area of support identified as being essential was for feeding, emphasising how it can pose a significant challenge for parents with resultant emotional effects:

‘Before you release the mum and baby, make sure they are in a proper pattern… I should have continued expressing and then I would have had more milk… there was no specialist support for feeding’ (secondary data 4).

‘So really breastfeeding was my salvation… There is a group run by mums to support you with breastfeeding… it is really good and it makes all the difference’ (secondary data 7).

Limitations

The limitations of the study should be acknowledged. Overall, it was conducted in south east England and so the views of the parents may not be reflective of opinions in other areas of the UK. Due to the voluntary nature of recruitment the researchers had no control over the ethnic background, age or gender of the participants. They compromised mainly mothers between the ages of 30 to 40 from a Caucasian ethnicity rather than representing a range of different characteristics. However, the value of the father’s participation was valued. In addition, the interviews were conducted largely in the participants’ own homes. While this provided a familiar and comfortable setting, there were distractions at times which could have influenced the data collection.