There has been little research looking at parents’ initial experiences and reactions to very preterm birth, or into their experiences and satisfaction with care during very preterm birth.
See Appendices 10–12 for the published reports of this work.
Research aims
The aims of this work package were to:
Explore parents’ experiences of very preterm birth, and their first moments with their baby, through three separate analyses to explore:
mothers’ and fathers’ initial experiences of the birth of their very preterm baby
parents’ experiences and satisfaction with their care during very preterm birth, and to identify the domains associated with positive and negative experiences of care
parents’ views and experiences of the care for their very premature baby on a neonatal intensive care unit (NICU).
Systematically review available measures of parents’ satisfaction with care during labour and giving birth.
Develop a questionnaire to measure parents’ satisfaction with care during very preterm birth (P-BESS).
Methods for data collection
Parents whose baby was born before 32 weeks’ gestation during a 6-month period at three NHS hospitals in the south of England were sent letters of invitation to participate in the qualitative interviews (see Appendices 10 and 11 for full details). Of 123 eligible parents, 39 (32%) agreed to be interviewed (32 mothers and 7 fathers).36 Two babies died shortly after birth. Interviews contained 13 open-ended questions and lasted about 45 minutes. They were conducted by one psychologist and took place at the participants’ home, or in a private hospital room. Interviews were recorded and transcribed. Reporting complied with COREQ (Consolidated criteria for reporting qualitative research).154
For the comparative review, studies were included if they reported use of a questionnaire that was a multi-item scale of satisfaction with care during labour and birth, and provided psychometric information (about questionnaire construction, reliability or validity) for the satisfaction measure.43 To identify potentially eligible studies we used the search terms (Birth or Childbirth or Lab*r or Intrapart*) AND (Satisfaction or Perception or Evaluation) AND (Questionnaire or Measure* or Scale or Instrument). We searched Scopus, PsycArticles, PsycINFO, PubMed and Web of Science from inception to 30 July 2011, and checked reference lists in reports of included studies for additional studies. Duplicate citations were removed. Finally, Web of Knowledge and Scopus were searched for all reports that cited the final questionnaire measures; no new citations were identified. Data extraction was by two reviewers.
Initially we developed the questionnaire using data from the interviews and studies identified in the comparative review. We identified seven areas of satisfaction with care during preterm birth: (1) information and explanations, (2) emotional support, (3) encouragement and reassurance, (4) staff being confident and in control, (5) staff being calm in a crisis, (6) involvement of the partner and (7) birth environment. Thirty questions were included, both positively and negatively phrased, and responses scored on a Likert scale; we made minor changes following feedback from nine parent representatives. The questionnaire was then posted to parents of babies born very preterm during the previous 12 months at five tertiary care centres in England.
Analysis
We used inductive systematic thematic analysis to identify themes across interviews. Data were managed using NVivo software. For the systematic review, we assessed psychometric quality of each questionnaire using questionnaire construction (item generation, pilot study), reliability (internal consistency, test retest reliability) and validity (content, face, criterion and construct).
For the questionnaire, a factor analysis was conducted to explore whether questions could be combined into subscales that represent different aspects of satisfaction with care during very preterm birth. Three questions asked about partner’s involvement so, as they were not relevant for all women, they were excluded from the initial analysis. Hence, 27 questions entered into the factor analysis. The number of factors to be retained was determined using the scree plot and eigenvalues > 1. Questions that loaded on a factor at > 0.4 were considered significant and were retained. Questions that loaded on more than one factor ≥ 0.3 were removed and the analysis was rerun. To check whether questions and subscales for the women were applicable to partners, we conducted a confirmatory factor analysis.
Content validity is evident through the systematic series of steps taken when designing the questionnaire. Convergent validity was explored by examining the relationship between the total score (and associated subscales) with two questions assessing overall satisfaction with care during the birth, and reliability by looking at indicators of internal consistency.
Key findings
Parents’ experiences of very preterm birth and their first moments with their baby
Following very preterm birth, almost half of parents had difficulty remembering aspects of the birth.36 Two-thirds saw their baby at birth and one-third saw their baby for the first time in the neonatal unit. The anticipation before seeing their baby for the first time was characterised by contrasting emotions, with some parents eager and excited, whereas others, while wanting to see their baby, nevertheless felt scared and even dreaded the experience. For example, one father (2, caesarean section, delayed card clamping) said ‘They rang down and said “do you want to come up and see little one?” We went ”yeah course we do, you know, brilliant”’, one mother (27, caesarean section, delayed card clamping) said ‘I was very scared of seeing him’, and another mother (24, vaginal birth, delayed cord clamping) said ‘I thought I’ll go onto the ward and, thoughts running through my mind of what I was, what I was gonna find, how many tubes was he gonna have, was he gonna be OK, what colour was he gonna be, did he have everything, 10 fingers 10 toes, and I found myself sitting by the incubator counting and making sure he had 10 fingers and had 10 toes’.
Similar contrasting emotions were described about touching their baby, for example one mother saying ‘You don’t want to hurt them. You’re so on edge, and you want to care for them and touch them if you can, or whatever, but also you just feel terrible if you think you’ve done something wrong’.
First contact with their baby was characterised by turbulent emotions, described as a ‘rollercoaster of emotions’. Parents spoke about the confusion of feeling both elated and devastated, and others felt guilt about the preterm birth. One mother said ‘. . . I was all prepared, arms out and they give her to me, and it was wonderful, absolutely wonderful’, and another commented ‘you just feel guilt, the guilt is overwhelming, you know you do kind of go through aah, not feeling sorry for yourself, it’s just the guilt, it’s not “oh why’s this happened to me?” it’s “why’s it happened to her?”‘. Half of parents who talked about touching and holding their babies described immediate bonding with the first touch.37 Visiting NICU was initially overpowering, especially for those who had not been before or who were seeing their baby for the first time. This was described as ‘a little hidden world, full of poorly babies’.38 Parents described awkwardness and exclusion felt by fathers, particularly during emergency caesarean section, one comment being ‘It’s different being a man . . .’. Nevertheless, fathers often saw their baby first, and typically experienced this alone.
Overall, the parents’ experiences of care during the birth were positive.36 Our study identified four determinants of parents’ experiences of care during very preterm birth: (1) staff professionalism, (2) staff empathy, (3) involvement of the father and (4) the birth environment. These are consistent with previous research on term births. However, two factors unique to very preterm birth were the importance of the staff appearing calm during the birth, and staff taking control during the birth. Parents felt that care could have been improved in two areas: staff could listen more to what women said, and believe them; and the father could be more involved in the birth.
Comparative review of measures of parents’ satisfaction with care during labour and birth
Nine questionnaires measuring satisfaction with care during labour and birth were identified (). For seven of these questionnaires, how the items were selected was described. Eight of these questionnaires had tests of internal consistency, but only one reported test–retest reliability.43 At least one aspect of validity was reported for all questionnaires, but none reported criterion validity.
The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow chart for the comparative review. Reproduced from Sawyer et al. © Sawyer et al.; licensee BioMed Central Ltd 2013. This article is published under license to (more...)
Only two questionnaires assessed satisfaction with different aspects of care, as well as the perceived importance of these aspects of care. Three questionnaires were designed for particular types of births, two for operative births and one for uncomplicated vaginal birth. None of the nine questionnaires evaluated care for specific populations, such as parents of sick or preterm babies, or whose baby was stillborn. Parent experiences in these situations may be substantially different from giving birth to a healthy, term baby.
Preterm Birth experience and Satisfaction Scale questionnaire to measure parents’ satisfaction with care during very preterm birth
Based on the qualitative interviews with parents, the review and discussion with relevant experts, we identified 97 potential questions in seven domains. Following screening by two experts, 30 items were chosen (27 in the maternal section and three in the partner section) for the draft questionnaire.44 To check face validity, content validity and ease of comprehension the P-BESS was sent to nine parent representatives, following which minor changes were made to the wording.
We posted this 30-item questionnaire to 458 couples/single parents, and 147 were returned completed (32% of couples/single parents, 147 women and 107 partners). Of these 24 were excluded, largely as they were completed by partners who were not present at the birth, leaving 145 women and 85 partners. Initial screening removed three questions that were not performing well. Another three were removed because they did not significantly correlate with other questions. The remaining 21 questions in the maternal section were entered into the factor analysis and a further four questions were removed (see Appendix 12). The final factor analysis identified three factors with 17 questions for the maternal section: ‘staff professionalism and empathy’ [seven questions, mean 29.2, standard deviation (SD) 5.1], ‘information and explanations’ (seven questions, mean 27.9, SD 5.7), and ‘confidence in staff’ (three questions, mean 12.4, SD 2.5) (). The mean score for the total scale was 69.5 (SD 11.6), out of a possible range of 17–85. Rerunning the factor analysis with the addition of partner involvement questions confirmed that the three factors remained, with the addition of a fourth factor with the partner involvement questions.
The P-BESS questionnaire: maternal section with 17 items and partner involvement section with two items
The total scale and subscales had good reliability and individual items correlated well with the total scale. Reliability for the ‘partner involvement’ subscale was 0.72 but this increased to 0.91 with deletion of one question, which was therefore removed. Convergent validity was explored by comparing the scales with the two questions measuring overall satisfaction with care and the need for improvement. The total scale and three subscales were all moderately to strongly correlated with these items. A confirmatory factor analysis to check applicability to fathers showed that the scale was reliable (α = 0.93), but the three subscales in women’s responses were not applicable to partners and the three factor solution did not fit the partner’s data well. One possible explanation for this is that fathers’ experiences of preterm birth differ from mothers’.44 We recommend that only the total score on satisfaction with care is used for partners. Total scores were related to higher levels of overall satisfaction and less need for improvements, indicating convergent validity for partners.
Successes
We achieved a good response to the invitation to be interviewed. The use of qualitative methods provides an in-depth insight into the experiences of parents who have had a very premature baby. The inclusion of fathers and bereaved parents also provides a valuable and unique perspective. Our data underline the importance of listening to women during preterm labour and of encouraging fathers to feel involved during the birth. Whenever possible, parents should be encouraged to visit the NICU before birth. If this is not possible, parents could be provided with a photograph of their baby in the neonatal unit before they visit.
Parents who are worried about touching their baby should be reassured and taught to recognise infant behaviour in response to touch.
Having identified only two existing questionnaire measures of satisfaction with care during labour and childbirth, both designed for term birth, we developed a new tool for use by both parents following very preterm birth. This tool is the first specific to preterm birth. The total score may be useful to compare satisfaction with care during very preterm birth across hospitals and differing practices, and individual aspects of care can be evaluated using the separate subscales. We used this tool to measure satisfaction with care in the Cord pilot trial (see Work Package 4), and it has been translated into Spanish and Portuguese.
Challenges
Although the response rate for our qualitative interviews was good for this type of study, we received responses from parents whose baby was born only from two of the three hospitals, reducing the generalisablity of our data. In addition, participants were mainly white, married women, which is not typical for very preterm birth. In common with other studies of satisfaction, parents may have been reluctant to criticise the professionals who took care of them and their preterm baby. This ‘halo effect’ may be even more pronounced for parents of premature babies, as the staff have been looking after their baby for many weeks.44 Similarly, if women do not know what care during birth should be like they may just evaluate the status quo.156,157 Our study used in-depth interviews by a researcher not associated with the hospital, which should have helped to pick up relevant negative experiences.
The response rate for development of the questionnaire was relatively low, although again this is a good response for studies of this kind. The sample size was relatively small for a factor analysis, which limits the validation process. In addition, the sample was not representative of all parents who have a very preterm birth, as it included largely white, highly educated, married/cohabiting women and their partners. Finally, as the same factor structure was not identified in partners as in women, only the total score is recommended for use with partners, which means that the individual factors of care cannot be explored for them.
Implications for future research
Further research is needed to replicate our findings about parent experiences at very preterm birth, and to explore whether or not there is variation for parents from different backgrounds. For the P-BESS, further studies are needed to test the refined instrument in a larger, more representative sample of parents. Fathers of preterm or sick babies are a difficult group to recruit into research.158 Our work highlights the importance of including them in research studies to ensure that their perspective is represented.
Our experience in conducting semistructured interviews with parents following very preterm birth also contributed to the design and conduct of an evaluation of parent and clinician experiences of neonatal care beside the mother (see Work Package 3.5), and of women and clinicians’ experiences of the two-stage consent pathway in the Cord pilot trial (see Work Package 4).
