To identify consensus from key stakeholders regarding the priority topics for a “parental neonatal curriculum.”
This “parental neonatal curriculum” describes the core topics to educate parents of neonates admitted to a neonatal unit in Rwanda, and would also be applicable in other resource-limited settings.
This was a three-round Delphi study. Delphi methods use sequential “rounds,” with controlled feedback between rounds to build consensus from a group of experts . The Delphi method is useful in situations where individual opinions and judgments need to be considered and combined to answer an incomplete state of knowledge. The process was “fully anonymized,” that is participants did not know the identities of the other individuals in the group, nor did they know the specific answers that any other individual had given.
We recruited two groups:
Group 1 - Parents: Parents of admitted neonates were eligible for inclusion. Parents of neonates with a poor prognosis where participation could be distressing for the participant were excluded along with parents who were themselves under 18 years-of-age. Parents were recruited at two newborn care units of the University Teaching Hospital Kigali (CHUK), and Muhima District Hospital (MDH). Due to the transient nature of parents at the two sites, the parent participants were different in each Round of the Delphi study. Convenience sampling was employed at the clinical sites.
Both units are found in Kigali, the capital city of Rwanda. CHUK is a tertiary level hospital with the newborn unit has approximately 560 admissions and caters for 20–30 infants every day, with three Kangaroo Mother Care (KMC) spaces. The obstetric department is a referral unit and the principal site for approximately 2000 high-risk deliveries per year . MDH is a district hospital, located in Kigali city, and serves approximately 1 million people. The hospital has only two major departments: obstetrics & gynecology and pediatrics with neonatology and is responsible for approximately 15,000 deliveries per year. The MDH neonatal unit includes 25 cot spaces and eight KMC spaces. Both neonatal units would be considered a level II by USA standards  and level I by UK standards , providing simple therapies such as CPAP and intravenous fluids, without mechanical ventilation or total parental nutrition. There are no admission weight cut-offs, and standard practice requires a weight of 1.8 kg before discharge .
Group 2 - Expert stakeholders: We defined an “expert” as professionals who had experience in clinical care for neonates and their families in a resource-limited setting, such as Rwanda. These experts were drawn from the following: (i) Nurses and midwives at the two clinical sites; (ii) Rwandan clinicians and residents working in Rwanda in pediatric and neonatal care who were identified via the pediatric academic faculty at the University of Rwanda; (iii) Members of the Rwandan Ministry of Health (MoH) Neonatal Working Group (NWG) including pediatricians, nurses and midwives, identified through the chair of the NWG; (iv) General Practitioners (clinicians working in district hospitals) identified through the class-representatives at the University of Rwanda; (v) Non-Rwandan, international pediatricians and neonatologists with experience of working in Rwanda through the Human Resources for Health (HRH) program  identified from the Ministry of Health (MoH) database of HRH faculty. We communicated with the expert stakeholders by e-mail or via visiting the two clinical sites.
In Round-1 we aimed to undertake face-to-face interviews with 10 participants. For Rounds-2 and -3, we aimed to gain responses from a minimum of 15 respondents, in each round, which is considered the required number for achieving consensus in Delphi studies . Group-2 response rate was predicted to be 10%, therefore, invites were sent to 80 potentially eligible participants. Non-participation in Round-2 did not exclude participation in Round-3. New participants in Group 2 were not added between Round-2 and -3. The exception to this were nurses and midwives at the clinical sites who were recruited opportunistically at the clinical sites and completed paper rather than online questionnaires.
The questionnaires were designed specifically for the purposes of this study. The questionnaires and feedback were translated for parents into Kinyarwanda, the single unifying language of Rwanda, by the Principal Investigator (JAM). Expert stakeholders (Group-2) completed the questionnaire in English. All questionnaires were piloted for understanding before use. Paper questionnaires (face-to-face) were administered at the clinical sites for parents, nurses and midwives (CHUK and MDH) and therefore this group of stakeholders did not require internet access. Electronic questionnaires (Google Forms®) were sent by email to expert stakeholders (Group-2) found outside of the clinical sites.
Participants took part in three rounds of surveys.
Round-1 (oral open-questions)
Face-to-face interviews were employed to build an initial draft list of the “parental neonatal curriculum” topics. Two open questions were posed (see Additional file 1) for participants to describe the topics. As topics were identified using interviews there was no word limit on responses. The questions were asked verbally with responses collected by the PI using field notes. No voice recordings of the interviews were undertaken. Parents responses were then translated by the PI. HCPs responded in English. The responses were then coded, and summarised in Microsoft Excel by the PI (JAM) and supervising consultant (PC). Consensus for inclusion in Round-2, was pre-defined as any topic suggested by any one participant. The initial list of topics was categorized into five domains.
Round-2 (free-text open-questions)
Feedback from Round-1 was given to participants, with all the topics generated in Round-1 being presented to participants in the questionnaire. The items were presented within each individual domain and participants were then asked to add any additional topics that they felt were missing, within that domain, and should be added to the curriculum (see Additional file 2: for questionnaire). Parental responses were translated to English by the PI. HCPs responded in English. Responses were then coded and analyzed in Microsoft Excel. Duplicate items from Round-1 were removed. Consensus for new items to be included in Round-3 was pre-defined as any single topic that was given by any one participant.
Feedback was given to participants with the items from Round-1 and -2 being combined in a single list, and by presenting each topic with feedback in the form of a percentage of participants who had suggested it. These items were presented to parents and expert stakeholders who were asked to grade the importance of the topics using a 1–9 point Likert scale as described by the GRADE development group [27, 28]. The data-collector (JAM) presented the list to parents and was available to clarify any items that parents did not understand. Consensus for inclusion in the final “parental neonatal curriculum” was pre-defined as items with greater than 70% of participants scoring 7–9 (important) AND less than 15% of participants scoring 1–3 (not important) .
Correlation of importance of topics between stakeholder groups
To assess for overall correlation in opinion between the three stakeholder groups comparison of the mean scores of each topic was undertaken using linear regression and Pearson’s correlation (R). The importance of each individual topic was categorized into three levels of importance, namely 7–9 (important), 4–6 (intermediate) and 1–3 (not important) and then each individual item was compared between subject groups (clinicians, nurses, caregivers) using Chi-squared. Each item was color coded for importance with green representing high importance and red reflecting low importance. This allows for a visual comparison between the stakeholder groups.