The Experiences of Midwives Who Attend Births by Women with Life-Limiting Fetal Conditions (LLFC): A Phenomenological Research Study

Round 1

Reviewer 1 Report

Dear Editor,

Thank you for giving me the opportunity to review this manuscript on the experiences of midwives who attend births by women 2 with life-limiting fetal conditions (LLFC). I found the study well written and very interesting and I believe that it should be published because it fills a gap in the management of this difficult pregnancies. 

I have only some minor revision to suggest: 

Page 1, line 38: please provide a full extended text for the acronym LLFC

Page 2, lines 65-70: this is a repetition of the previous paragraph, please delete. 

Moreover, I would find useful if the authors could attach a file reporting the questions made during the interview. I understand that sometimes they were different among the interviews but I believe that adding the questions would improve the quality of the manuscript. 

Author Response

Thank you for giving me the opportunity to review this manuscript on the experiences of midwives who attend births by women 2 with life-limiting fetal conditions (LLFC). I found the study well written and very interesting and I believe that it should be published because it fills a gap in the management of this difficult pregnancies. 

Dear Reviewer,
Thank you for reading our work and for your suggestions and comments. Below are the answers point by point.

I have only some minor revision to suggest: 

Page 1, line 38: please provide a full extended text for the acronym LLFC

Done

Page 2, lines 65-70: this is a repetition of the previous paragraph, please delete. 

Done

Moreover, I would find useful if the authors could attach a file reporting the questions made during the interview. I understand that sometimes they were different among the interviews but I believe that adding the questions would improve the quality of the manuscript. 

In keeping with the reviewer's suggestions, the file containing the Interview Questionnaire file for participants in the study was added as an Appendix A.

Reviewer 2 Report

1. Overall interesting qualitative study

2. Introduction too long move some content to discussion.

3. Methods: how was the number of LFD births determined for each midwife?

4. Results were generally well done but I feel that the each theme result could be better focused such indicating for each theme and the number of midwifes that found that theme significant and then the comments could follow. 

5. Discussion both strengths and limitations are needed and the limitation is more than slight.

6. More comment or thought is required as these LLFC births allow preparation and planning even with the issues identified compared to the unexpected IUFD (intra-uterine fetal death) at term or intrapartum as these allow no preparation and as a provider these were always the toughest deliveries especially if no etiology was found.

Author Response

1. Overall interesting qualitative study

Dear Reviewer,
Thank you for reading our work and for your suggestions and comments. Below are the answers point by point.

1. Introduction too long, move some content to discussion.

Part of the introduction has been moved to the discussion. Other reviewers, however, requested that parts be added to the introduction.

3. Methods: how was the number of LFD births determined for each midwife?

Women with LLFC received standard care in each of the hospitals. Women are admitted to the birth room on a first-come, first-served basis and by stage of labor. In this way, they are placed under the care of the midwife who is on duty in the birth room on a given day and who can take the woman into her care. No other factors determined the choice of midwife. During the interviews, each midwife was asked about the number of births involving a prenatal diagnosis with a lethal prognosis for the baby she participated in. This is described in the manuscript.

4. Results were generally well done but I feel that the each theme result could be better focused such indicating for each theme and the number of midwifes that found that theme significant and then the comments could follow. 

Added in keeping with the reviewer’s suggestions.

5. Discussion both strengths and limitations are needed and the limitation is more than slight.

We added strengths and limitations section:

Strengths and limitations

Among the strong points of this study is the fact that, as a qualitative study, it has enabled us to learn about the experience of midwives in detail and in depth. It also made it possible to capture a wide variety of experiences, opinions and beliefs that had previously gone unnoticed in the literature, leading to the uncovering of subtleties and complexities that might have been missed in quantitative studies. Moreover, while admittedly conducting a questionnaire-based interview, the authors were able to adapt their questions depending on the course of the study.

This study’s limitations are largely due to the qualitative nature of the research. The first has to do with the relatively small sample, which meant that the results obtained can not be generalized. Another one is the selection bias factor – the possibility that the study may only reflect the views of the midwives who, for reasons unknown to the authors, wished to share their experiences and came forward to take part in it, but not that of those who did not. Thus, such a sample may not reflect the experiences of the entire population of midwives. Importantly, we do not know the opinions of those midwives who declined to take part in the study or who interrupted the interview on account of their strong emotions connected with this subject. Presumably, their opinions may differ considerably from those of the participating group. The presence of the interviewer may also have influenced the course of the study.

Ultimately, it should be said that our study is focused on the experiences of midwives who cared for parturients after a prenatal diagnosis with a lethal prognosis for the baby (LLFC). Therefore, it is important to conduct further studies related to loss (miscarriage) and other types of perinatal deaths (unexpected intra-uterine fetal death (IUFD), stillbirth, or neonatal death) faced by midwives.

6. More comment or thought is required as these LLFC births allow preparation and planning even with the issues identified compared to the unexpected IUFD (intra-uterine fetal death) at term or intrapartum as these allow no preparation and as a provider these were always the toughest deliveries especially if no etiology was found.

Thank you for pointing this out. The manuscript was supplemented to include the issue of difficulties involved in assisting during birth in situations of unexpected intra-uterine fetal death (IUFD) at term or intrapartum. An excerpt from an interview with a midwife is quoted in the results section, and the issue is also addressed in the discussion.

Reviewer 3 Report

This paper addresses a specific type of perinatal death that has an enormous impact on both parents and the health professionals who care for them. It is also an understudied area of research, so it is great to see a study in this area.

However I believe that the paper needs more work before it will be ready for publication. The authors need to better contextualise the issue within the broader topic of perinatal deaths so that readers are able to better understand the particular issues that health professionals face, and to understand overlaps with other types of perinatal death, particularly with stillbirth. Restructuring the background would help with this.

I suggest that the authors include mention of the specific issues that create challenges for those providing labour care to women who will deliver a baby with a life-limiting fetal condition (LLFC) in the background section. It would be helpful to readers to have this information. For example, concerns about the baby's appearance also apply to most antepartum stillbirths, even when cause of death is not known. It can have particular issues for those with LLFC where care providers need to consider practical aspects, such as if, and how, a baby may be presented to parents, and what photography might be appropriate.

It seems at times that the authors conflate the labour of Infants with LLFC and stillbirth, but some will be neonatal deaths. Although the fact that some babies with LLFC are born alive, it would be useful if this particular challenge was raised in the background section. This would help make sense of the midwives' reactions.

Epidemiological data presented as fractions per 1000, are difficult for many people to interpret, so rather than 0.47 or 0.92 per 1000, these figures are  better framed as 47 per 100,000 and 92 per 100,000. Skills to manage LLFC will also be used for other labours, particularly for antepartum stillbirth has occurred, making it useful to link to other neonatal death outcomes. 

The paper would also benefit from clearer articulation of the specific LLFC issues in the results section in at least the first three identified themes - how are these issues for midwives caring for a labour where it is known that a baby has LLC different from other stillbirths and neonatal deaths? Some of the issues raised will be common to other stillbirth labours but others will not. The last theme, the workplace, may have greater similarities to caring for other women where stillbirth occurs.

There are a couple of places where the English expression may need to be amended. The quote at the top of Page 6 begins - "and decide to give birth together a little bit thoughtlessly", as this is likely to be a translation, perhaps this could be rephrased,  "and decide to give birth together but avoid thinking about the issue".

Page 7 - again translation in a quote "I myself started going to such supervision" and ""five midwives in all are to such supervision". I believe it should be "counselling" not "supervision".

On Page 5 - "unique" is used to describe the experience of one midwife, but the experience is not "unique" although it may be uncommon in this sample.

The authors claim in their conclusion that "Our study indicates unequivocally" in relation to parents' needs but I am unsure how they feel that they have done this by interviewing midwives alone. The study focuses on midwives' experiences, not parents needs.  

Author Response

This paper addresses a specific type of perinatal death that has an enormous impact on both parents and the health professionals who care for them. It is also an understudied area of research, so it is great to see a study in this area.

However I believe that the paper needs more work before it will be ready for publication. The authors need to better contextualise the issue within the broader topic of perinatal deaths so that readers are able to better understand the particular issues that health professionals face, and to understand overlaps with other types of perinatal death, particularly with stillbirth. Restructuring the background would help with this.

Thank you very much for mentioning this important question. In keeping with the suggestion, the following has been added to the Introduction:

In their practice, midwives and physicians must face various situations involving perinatal death, intra-uterine fetal death (IUFD), or stillbirth. Caring for families which are affected by these traumatic circumstances is one of the most difficult experiences for health professionals. [8–10] Each type of perinatal death represents a challenge and emotional burden for the medical care providers, as each situation is characterized by its own specific circumstances and calls for an individual and culturally differentiated approach to loss and death. Most parents are hopeful that their child will be born alive, notwithstanding the diagnosis with a lethal prognosis. [11]

Studies show that such a birth is often accompanied by a deafening silence, during which the midwife doesn’t know what to say as she hands the stillborn child to the mother. [3–5]  For midwives providing care in the birth room, this issue gives rise to anxiety about the parents’ reaction when faced with their stillborn child.

I suggest that the authors include mention of the specific issues that create challenges for those providing labour care to women who will deliver a baby with a life-limiting fetal condition (LLFC) in the background section. It would be helpful to readers to have this information. For example, concerns about the baby's appearance also apply to most antepartum stillbirths, even when cause of death is not known. It can have particular issues for those with LLFC where care providers need to consider practical aspects, such as if, and how, a baby may be presented to parents, and what photography might be appropriate.

In keeping with the suggestion, the following fragment has been added to the Introduction:

At the same time, the medical personnel is obligated to provide the best possible medical care and, in so doing, must decide on and carry out many issues of a purely organizational nature, including the parents’ viewing and holding the stillborn child and taking photographs. However, there is a lack of clear scientific guidelines concerning proper conduct in such situations and for this reason the medical personnel may feel an added burden of responsibility for the quality of care provided. [12]

It seems at times that the authors conflate the labour of Infants with LLFC and stillbirth, but some will be neonatal deaths. Although the fact that some babies with LLFC are born alive, it would be useful if this particular challenge was raised in the background section. This would help make sense of the midwives' reactions.

A very valuable comment. We added the following passage in the Introduction:

At the same time, the medical personnel is obligated to provide the best possible medical care and, in so doing, must decide on and carry out many issues of a purely organizational nature, including the parents’ viewing and holding the stillborn child and taking photographs. However, there is a lack of clear scientific guidelines concerning proper conduct in such situations and for this reason the medical personnel may feel an added burden of responsibility for the quality of care provided. [12]

Epidemiological data presented as fractions per 1000, are difficult for many people to interpret, so rather than 0.47 or 0.92 per 1000, these figures are better framed as 47 per 100,000 and 92 per 100,000. Skills to manage LLFC will also be used for other labours, particularly for antepartum stillbirth has occurred, making it useful to link to other neonatal death outcomes. 

Changed in keeping with the suggestion. 

The paper would also benefit from clearer articulation of the specific LLFC issues in the results section in at least the first three identified themes - how are these issues for midwives caring for a labour where it is known that a baby has LLC different from other stillbirths and neonatal deaths? Some of the issues raised will be common to other stillbirth labours but others will not.

The above comment is very valuable. We decided to add to the results the following statement made by a midwife and an accompanying analysis:

Most midwives said that it is difficult to care for a parturient who unexpectedly learns about the intra-uterine death of her previously healthy child. Three midwives (Interviews nos. 2; 3 and 15) said that, with this group of parents, the most difficult aspects involve unpredictable reactions in the birth room and communication difficulties. The parents, in their despair, don’t want to see the child and blame the midwives for what happened to them. As one midwife related it:

We spend the entire night in the birth room… it is a difficult experience to assist people in this situation... In her despair the mother even denied the humanity of her child and called on us to take “this” away from her…. Having carefully worked with their emotions all night, having overcome this anger, they said farewell to their child; they spend time with it and did everything they possibly could for the child. During the night, they came to terms with being parents to their stillborn child (Interview no. 15).

The last theme, the workplace, may have greater similarities to caring for other women where stillbirth occurs.

Our experience allows us to put forward the thesis that midwives working in medical units with the highest level of reference have a higher probability of being in a situation of assisting in the birth of a child with LLFC (or IUDF or intrapartum death), since it is in such places that most difficult cases are diagnosed and consulted. However, the scope of this study does not allow the authors to corroborate this thesis.

There are a couple of places where the English expression may need to be amended. The quote at the top of Page 6 begins - "and decide to give birth together a little bit thoughtlessly", as this is likely to be a translation, perhaps this could be rephrased,  "and decide to give birth together but avoid thinking about the issue".

Thank you for pointing this out. We changed the translation to read: It seems to me that some couples come to the maternity ward and decide to give birth together without having given it much thought.

Page 7 - again translation in a quote "I myself started going to such supervision" and ""five midwives in all are to such supervision". I believe it should be "counseling" not "supervision".

Changed in keeping with the reviewer’s suggestion.

On Page 5 - "unique" is used to describe the experience of one midwife, but the experience is not "unique" although it may be uncommon in this sample.

This word has been changed to “uncommon”.

The authors claim in their conclusion that "Our study indicates unequivocally" in relation to parents' needs but I am unsure how they feel that they have done this by interviewing midwives alone. The study focuses on midwives' experiences, not parents needs.  

Thank you for this observation. It was an unfortunate statement. We changed it to:  

Our research shows that the level of stress and work comfort of the midwife assisting in the birth of a lethally ill child depends on the quality of preparation of the parturient and the child’s father for delivery

Round 2

Reviewer 2 Report

Thank you as my concerns were identified and considered.

Author Response

Thank you very much.