Neonatal Expenses Fund year one: evaluation

2. Method

2. a. Research Method

There were three aspects to this research: the collection of financial and neonatal admissions data; a parent survey; and a staff survey.

Financial Data

Data was requested from each of the 14 health boards to report on NEF spending.

Parent Survey

Data from parents was collected via an online survey of parents whose children had received treatment in any neonatal unit in Scotland between the period 1^st April 2018 to 31^st March 2019. Parents were recruited via online promotion of the survey by Bliss, a third sector organisation supporting premature and sick babies and their families. Parents were not recruited via the NHS or through the use of health data. The survey was open for a period of two months in June and July 2019.

Staff Survey

Data was collected via a second online survey from finance staff from all 14 health boards and neonatal ward staff in all 16 neonatal units in Scotland. Staff were recruited via email invitations sent to all neonatal units in Scotland. This survey comprised of a mixture of open and closed questions about the process of implementing the NEF and was open for a period of approximately six weeks in June and July 2019.

Ethical considerations

Participation in both surveys was voluntary and all survey respondents were provided with an online consent form and privacy notice on commencing the survey. All necessary steps were taken to ensure that all data collection complied with GDPR and to ensure the anonymity of respondents. All quotes used in the final report are anonymous, and any potentially identifiable data has been redacted.

2. b. Sample Profile

Parent Survey

In total, 152 parents completed the survey. Of these respondents, 53 were excluded from the analysis because they stated that their child was not being treated in a Scottish neonatal unit during the 12 month evaluation period. The analysis of the parent survey is therefore based on the remaining 99 respondents whose children were admitted to neonatal units within the evaluation period (see Table 1). 68% of these respondents had made a claim to the NEF. Of those who did not make a claim, 19% stated that they had not been aware of the NEF, while 11% had been aware of it but chose not to claim.

Table 1: Respondents by claiming status

Of the 99 parents eligible to take part in the survey, 94% identified as either White British or White Scottish and 4% identified as White Irish. The most common age group was 30-34 (40%), followed by 35-39 (27%). No parents under the age of 20 or over the age of 44 took part in the survey. Respondents were spread across all five SIMD quintiles, with SIMD 3 the most common (26%). Taken together, slightly more parents from SIMD 4 and 5 responded than parents from SIMD 1 and 2. Demographic information about all the families whose children were admitted to neonatal units in Scotland during the evaluation period is not available. Variation may exist between these parents and parents who responded to the survey. Given this, it is not possible to definitively state that the responses from the parent survey are relevant to the whole population of parents of children admitted to neonatal units in Scotland.

For the majority of respondents, their children had stayed in a neonatal unit for between 6 weeks and 6 months (46%). Only 8% had children who had stayed for less than one week, and 2% had stayed for more than 6 months. The majority of parents who responded had babies who were admitted to the neonatal unit after the NEF scheme had been rolled out (90%), with the most common periods of admission being July-September 2018 (31%) and January-March 2019 (29%). Parents were asked which neonatal unit their child was first admitted to, 13 of the 16 neonatal units in Scotland indicated by parents.^[2]

Staff Survey

The staff survey was completed by 101 respondents. 81 respondents identified themselves as neonatal ward staff, 15 as finance staff, and 15 as “other” staff.

Responses from neonatal ward staff were received from 12 out of the 16 neonatal units in Scotland.

2. c. Limitations

It is important to note that the samples of parents and staff used in this study are self-selected samples of respondents. As such, they are not representative samples of all parents whose children were admitted to neonatal units during the first 12 months of the NEF, or staff working in neonatal units during the same period. Limited time and resources meant that it was not possible to procure a representative sample in the time available to conduct this evaluation. As a result, the survey findings must be interpreted with caution and should not be taken as generalisable to wider populations. However, they highlight some of the strengths and weaknesess of the fund and how the fund is being experienced through Scotland.