Exploring professionals’ views regarding prenatal counselling in congenital diaphragmatic hernia

Study design and setting

We performed a qualitative single centre study in the Radboud university medical center (Radboudumc) Amalia Children’s Hospital, a tertiary care centre and one of two Dutch referral centres for CDH. Semi-structured, individual in-depth interviews were conducted. The COREQ checklist [8] was used to report methods and results, see also Supplementary Material I.

Study population

The study population consisted of healthcare professionals involved in the care for CDH patients in the Radboudumc Amalia children’s hospital. Through purposive sampling, we aimed to gain a broad perspective by including physicians and non-physicians from various specialisms. We intentionally also included professionals who were currently involved in CDH care, but not in prenatal CDH counselling. Participants were recruited through email and/or face-to-face (CdG, EK, RG). Reminders were sent (CdG, EK) to non-responding professionals. Informed consent was obtained from all participants prior to the interview. The local Ethics Review Board (file 2020–6949) judged that this study did not fall within the scope of the Dutch Medical Research Involving Human Subjects Act.

Data collection

Based on literature [9, 10] and professional experiences of the research team, an interview guide was developed.

During the interviews, the preferred timeline of CDH counselling was addressed, followed by participants’ views regarding the topics they think should be discussed, the decision-making process and practical aspects regarding prenatal CDH counselling. Participants were asked in-depth questions regarding what they consider potential decisions and about preferred ways of decision-making. Regarding the practical aspects, participants were asked about their preferences regarding counsellors, duration of the counselling sessions and the use of supportive material. The interview guide was evaluated and updated in several rounds (CdG, EK, RG, RvdL, WdB). To test the interview guide and to train the interviewers (CdG, EK), two pilot interviews were held. The topic guide can be found in Supplementary Material II.

Digital video interviews were planned in October and November 2020 via Skype for Business and Zoom. Live interviews were not possible due to restrictions related to the COVID-19 pandemic. All interviews were conducted by two interviewers (CdG, EK); one had the role of main interviewer, the other made field notes. Recruitment and data collection proceeded until data saturation was reached (i.e., when no substantial new insights were gained).

Data analysis

All interviews were recorded audiovisually and transcribed verbatim (CdG, EK). The transcripts were inductively analysed using the constant comparative method (CdG or EK). Analysis of each transcript was subsequently reviewed by the other analyst, after which all discrepancies were discussed (CdG, EK and RG) until consensus was reached.

Codes were assigned through open coding, regrouped into higher-order themes and subthemes, and refined through multiple readings. The analysis was performed using ATLAS.ti version 8.4.20.

Demographics

A total of 33 healthcare professionals was approached. Participants from nine professions could be included, and inclusions were stopped when data saturation was reached (n=18 participants). The interviews lasted 23–61 min (median 40 min). Main characteristics of the 18 interviewees can be found in Table 1.

Quotes

Table 2 provides participants’ quotes concerning their preferences in various aspects of prenatal CDH counselling.

Views regarding the timeline and goals of prenatal CDH counselling

The professionals agreed that the first counselling session should take place as soon as possible after CDH is diagnosed, which is most often around 20 weeks’ gestation. Later in pregnancy, after the legal time limit for TOP (being 24 weeks GA in the Netherlands) has passed, opinions differed on the preferred moment of follow-up counselling sessions: ranging from 26 weeks GA to just before birth. When FETO is an option, it should be taken into account that the optimal time period for balloon insertion is between 27 and 29^+6/7 weeks GA [11].

A summary of the views regarding timeline and goals of prenatal CDH counselling as suggested by the interviewees is provided in Figure 1.

Figure 1:

Summary of participants’ views on timeline and goals of prenatal CDH counselling. FETO, fetoscopic endoluminal tracheal occlusion; CDH, congenital diaphragmatic hernia.

The participants emphasised that the number of counselling sessions should be adjusted to parents’ needs and wishes. Most of the interviewees stated that more than one session before the legal time limit for TOP should be offered. Reasons given were to support the process of decision-making and because parents need as much time as possible within the legal restrictions. Another reason provided was that additional ultrasounds may provide new information, for example about the prognosis, and that these findings should be explained. According to the interviewees, an important goal for follow-up conversations was to answer questions that parents usually have.

Views regarding the content of prenatal CDH counselling

Almost all professionals mentioned that the content of prenatal counselling should be personalised by exploring parents’ needs and expectations. Parental values (e.g., what do they want for their child and their family, what do they think is important for a good quality of life) should be discussed. Interviewees stated that this is crucial for decision-making about continuation or TOP and for managing parents’ expectations. Furthermore, the professionals wished to adjust the degree of medical detail to parents’ wishes and to what they assumed parents could handle at that moment.

The importance of allowing parents to have hope and give them perspective on a normal life for their child, considering the prognosis, was emphasised by several professionals. One participant suggested to also focus on positive aspects next to the negative aspects associated with this severe condition. Participants thought losing hope would be the worst thing that could happen to parents and should be prevented, in particular when the legal limit for TOP has passed.

Most of the participants emphasised that to make an informed decision about continuation or TOP, counselling should contain at least the following topics: an explanation of the CDH diagnosis, what parents can expect in the short but also in the long term for a child with CDH, such as cardiorespiratory and nutritional problems and a prolonged hospital admission. Also the possible therapies should be discussed, e.g., surgery, extracorporeal membrane oxygenation (ECMO) and respiratory support. Many professionals also mentioned that the inability to predict an individual prognosis should be discussed with parents, just as a changing prognosis in case this occurs during pregnancy, which logically leads to adjusting the information discussed during the counselling sessions. Since participants experienced a lot of misconceptions in practice they thought this information would help parents to gain a most realistic approach as possible about the future.

Opinions differed about the use of statistics to express the prognosis. Some preferred mentioning specific numbers like survival rates, others said to only use an outcome category based on the O/E LHR (mild, moderate or severe) and argued that specific percentages should not be mentioned. They thought statistics were too difficult to understand for parents, not useful for an individual prognosis and that parents could become preoccupied with the percentages. The same applied to discussing the statistics regarding the occurrence of potential complications: several professionals suggested that potential complications should be mentioned without using numbers.

In follow-up counselling conversations, according to the interviewees, information could be repeated or more detail could be given. Furthermore, additional explanations about the delivery and events immediately after birth could be discussed, participants thought that this was important for parents to prepare themselves. Participants explained the importance of practical information about the postnatal period, since having a child with CDH affects parents’ relationship, siblings, housing, and work. They thought that practical information could give parents something to hold on to in these uncertain times.

Table 4 presents a summarised list of the topics suggested to discuss in prenatal CDH counselling. In Supplementary Material III, a more extensive table including the subtopics can be found.

Views regarding the decision-making process in prenatal CDH counselling

Preferences regarding the practical aspects of prenatal CDH counselling

Strengths and limitations

A strength of this study is the inclusion of a diverse sample of healthcare disciplines, which improves the transferability of our results. Notable is that two-thirds of the interviewees were not currently involved in the prenatal CDH counselling. This may provide important new insights, but they could have unrealistic or even incorrect ideas on current counselling practices.

A limitation of this study is that although interview questions where open ended, the preselection of domains could have introduced a potential bias. The interview guide was developed with neonatologists and mostly focused on the child’s healthcare perspective. Involving (e.g.,) an obstetrician, a social worker or parents could have led to a wider scope by e.g., including more questions regarding pregnancy or social aspects. Furthermore, this was a single centre study, so it is unsure whether the results are representative for other centres. Also, parents’ views were not explored, however recently their experiences are described by others [18]. This study initiated a follow-up research collaboration involving a multidisciplinary expert panel including parents, who will formulate recommendations for prenatal counselling.