Nausea and vomiting of pregnancy (NVP) are common during the first trimester of pregnancy, affecting 50 to 80% of pregnant women. A much smaller proportion (0.3-3%) of pregnant women encounter intractable vomiting, which may be complicated by dehydration, significant weight loss, and electrolyte disturbances necessitating hospital admission [
Despite the recent introduction of national HG guidelines in the UK [
Antiemetic and other HG therapies are of limited effect, which creates a larger role for patient preferences in the way HG care is arranged [
The aim of our study was to describe women’s experiences and preferences of HG care. Which aspects of care did they find helpful and led to recovery? Which areas of care need improvement? What were their main concerns and needs during and after their HG episode? The findings of our study will contribute to the improvement of HG treatment as they could be used as a basis for innovation and relocation of care in such way that it better meets the needs and preferences of women with HG. Finally, the input of patients can guide the HG research agenda.
We recruited participants by posting an invitation on Facebook and home page of ZEHG, the Dutch HG patient foundation (see supplementary information
Verbal consent to use the voice recorder was requested at the start of the interview. All participants gave written consent for recording and using the interview as material for medical scientific research. The Medical Ethics Committee (MEC) of the Academic Medical Center decided that this study was not subject to the Medical Research Involving Human Subjects Act (WMO).
We collected data by using open and extended querying during in-depth interviews in order to provide sufficient space for asking supplementary questions. The interview started with the question “What were your experiences with the treatment you received for HG?”. When the answer to this question was too brief, supplementary questions were asked based on the topic list (see supplementary information
During the interviews, baseline data of the women interviewed regarding their hyperemesis gravidarum experiences were obtained (see Table
Baseline data of the women interviewed regarding their hyperemesis gravidarum experiences.
| | | | | | |
---|---|---|---|---|---|---|
1 | 30 | G4P0 | Meclozine, Metoclopramide, | Med. SW | EMDR | GP, psychiatrist, neurologist, |
| ||||||
2 | 27 | G1P0 | Meclozine, Metoclopramide, | EMDR | GP, gynaecologist | |
| ||||||
3 | 28 | G1P0 | Meclozine, Metoclopramide | Meetings with a psychologist | GP, midwife, gynaecologist | |
| ||||||
4 | 27 | G1P0 | Metoclopramide, Nutridrink, | Med. SW, meeting with a psychologist | Meetings with a psychologist | GP, midwife, |
| ||||||
5 | 21 | G1P0 | Medication unknown, | Med. SW | Meetings with a psychologist | GP, gynaecologist |
| ||||||
6 | 30 | G1P0 | Meclozine, rehydration | Med. SW | GP, midwife | |
| ||||||
7 | 19 | G3P0 | Meclozine, Metoclopramide, | Meetings with a psychologist | EMDR in future | GP, gynaecologist |
| ||||||
8 | 28 | G1P0 | Meclozine, Nutridrink, | Meetings with a psychologist | EMDR | GP, midwife, gynaecologist |
| ||||||
9 | 30 | G2P1 | Meclozine, Metoclopramide, | Med. SW | EMDR, dietician | GP, midwife |
| ||||||
10 | 30 | G3P2 | Meclozine, Metoclopramide, | Meetings with a nurse practitioner and | GP, midwife | |
| ||||||
11 | 33 | G2P1 | Meclozine, Metoclopramide, | Meetings with a psychiatrist | Midwife, | |
| ||||||
12 | 27 | G2P0 | Meclozine, Nutridrink, | GP, midwife | ||
| ||||||
13 | 31 | G2P1 | Meclozine, Ondansetron, rehydration | Med. SW, | GP, midwife |
Two investigators (MB and RV) coconducted the 13 interviews, which lasted on average 40 minutes each. To minimize variation between interviews, one investigator (MB) always acted as interviewer. The second investigator functioned as observer (RV). The interviewer (MB) is an experienced midwife. The observer made a summary for the subject review and checked by using the topic list whether all topics had been addressed. Participants were given the choice of being interviewed at their homes or at the hospital.
In order to check the accuracy of the findings, member checking and subject review were performed. We carried out subject review by providing the patient with a summary of the interview in order to check the information for accuracy and correctness of interpretation [
The interviews were recorded using a recording device. With the help of two other investigators (AS and JP), the records were transcribed and transferred to a hard disk and deleted from the carrier. We ensured participant anonymity by removing the personal details from the records and transcripts. All data (interview records, transcripts, and participant’s data) were labeled with numbers following the timeline of the interviews.
All interviews were fully transcribed and coded using the three different types of coding methods of Strauss and Corbin, as described by Boeije (2008) [
Data analysis was facilitated by MAXQDA qualitative data analysis software version 12 (VERBI Software (2016), Berlin, Germany).
13 women were interviewed. Baseline characteristics of the women interviewed regarding their hyperemesis gravidarum experiences are shown in Table
All participants stressed the importance of understanding and recognition of the disease in HG treatment. Many reported that they had not been taken seriously by caregivers, and their problems were being trivialized.
Also, participants perceived that caregivers thought it was their own choice not to eat and felt pressured by them.
According to the participants, more knowledge on HG among caregivers would have contributed to more understanding and knowledge of the disease and early recognition of the symptoms.
All participants underlined the importance of early medical intervention. They encountered that their calls for help were not taken seriously. They wanted the caregivers to explore the severity of the disease by thorough questioning and paying a home visit, because they experienced difficulties with visiting a GP or midwife.
In addition, some participants had trouble with being assertive due to their sickness and weakness.
Often treatment only starts after dehydration sets in. Interviewees reported that they would have preferred a more prevention-focused treatment, for example, by starting earlier with (other) medication and/or nasogastric tube feeding (see also next paragraph). According to them, early treatment could avoid dehydration, further weight loss, and multiple hospital admissions.
8 women (62%) had received nasogastric tube feeding and underlined the benefits of it. Women who were not treated with tube feeding said they wished they had. The reasons stated were the following: Prevention of severe weight loss, dehydration, general weakness that comes with lack of intake, and necessity for (multiple) hospital admissions Ensuring enough nutritional intake for the baby Reducing vomiting by preventing an empty stomach
Over half of the interviewees (7/13) reported lack of communication about the different treatment options. More communication could have given them a more positive outlook and trust in continuing their pregnancy. They also wanted to have a say in deciding on which therapy was appropriate. 5 participants felt it important to make a treatment plan with the gynecologist to feel up to another pregnancy.
Furthermore, the participants indicated big differences in HG treatment between hospitals. They noticed these differences by sharing information and experiences with peers. Those differences were mainly in the pharmacological treatment but also in the criteria for hospital admission. They advocated more uniformity.
The majority of the participants (69%) emphasized the importance of a single room in hospital. The main reason was avoidance of stimuli that evoked vomiting, like light, noise, and smells, in particular food, but also body odor and perfumes. Other reasons were that they were ashamed of their vomiting; it was confronting to see other more healthy and happy pregnant women, and they wanted to be alone rather than having to talk with others.
6 women preferred home treatment over hospital admission so they could stay in their own familiar environment but not without effective therapy. The conditions mentioned to make home treatment possible differed. These included nasogastric tube feeding, metoclopramide or ondansetron by infusion, and also support and care at home.
Over half of the participants (62%) reported lack of support and medical attention after hospital discharge for HG. This resulted in dehydration again and often the need for hospital readmission. They indicated that this could have been prevented if good home treatment, with guidance by a coach or other health professionals, had been provided.
7 women would have wanted the offer of psychological aid. Most of the women who did receive psychological support, for example, by meetings with a medical social worker (Med. SW) or a psychologist, appreciated it and considered it helpful. Women experienced loneliness, sadness, depressive feelings, anxieties, and feelings of failure and guilt.
Not only psychological support by a professional but also attention for the psychological impact of HG, for example, by nurses or other caregivers, was mentioned as very important. Questions like “how are you feeling?” and “what do you need?” were very much appreciated.
5 participants considered termination of a wanted and planned pregnancy due to HG symptoms. 8 participants said that seeing their baby on the ultrasound images gave them the strength to continue their pregnancies and experienced frequent ultrasound checks as very helpful and supportive.
We defined aftercare as care after childbirth. Both physical and psychological problems did not disappear after childbirth. 9 participants (69%) would therefore have appreciated the offer of aftercare. The following suggestions were made: a dietician to help regain a normal dietary intake, a physiotherapist to help regain strength, and psychological support to help patients deal with the violent and sometimes traumatic experiences.
The majority of the women wanted to be helped with handling their negative experiences. Some of them arranged help by themselves, for example, by following EMDR (eye movement desensitization and reprocessing) therapy, an empirically validated treatment for psychological trauma, and other negative life experiences [
Participants also indicated that they would have liked a follow-up consultation with the gynecologist in order to get everything straight and deal with the hard period they have been through. They would also have liked to discuss a treatment plan for a possible next pregnancy.
Many participants heard very late in the course of their illness that they were suffering from HG. According to them, it is important that HG is diagnosed and named as a separate entity from NVP and recognized earlier and that good information about the disease, the treatment options, and prognosis is provided. Women reported that the knowledge of having a “real” disease and not just morning sickness already helped them. This made them feel like they were not exaggerating, but they were suffering from a severe disease. In particular, the Facebook group and the page of ZEHG foundation (the Dutch HG patient foundation) were deemed valuable. Patients could find support, tips, and advice from peers and information about HG. They could inform colleagues, friends, and family to create understanding.
Participants suggested that the provision of information for HG patients and their families could improve by providing patient information sources like ZEHG foundation, for example, by means of a flyer.
Using unstructured interviews, we show that women who had been hospitalized for HG in North Holland in the past 4 years identified several areas of improvement in HG care, including increasing caregivers’ knowledge on HG, early medical intervention and nasogastric tube feeding, a single room in hospital, discussion of treatment options, more possibilities of home-treatment, psychological support during HG and after childbirth, and more uniform information and policies regarding HG treatment.
This is the first study using in-depth interviews to investigate patients’ preferences and experiences of HG treatment. However, our study has some limitations. We recruited participants by publishing a call for participants on the website and in Facebook groups of the “ZEHG” foundation. This strategy may have led to selection bias, oversampling the opinions of women with severe HG or of those who were active members of the online patient community. Furthermore, the recruitment text mentioned our aim to improve the treatment of HG. Women who were satisfied with the care they received may not have responded.
Despite possible selection bias, several items named by the participants correspond with existing literature, which will be discussed under the subheading “Interpretation.” A strength of our study was that our sample already reached saturation at 13 interviews, indicating a high degree of interpersonal consistency, although this might simply reflect that our recruitment strategy yielded a homogeneous sample.
Another limitation is the fact that the interviewees were all inhabitants of a single region and country. Netherlands lacks a national guideline for HG treatment. It is likely that variations in treatment between regions and countries have significant effects on topics that might improve HG care. In UK, for example, many women with HG may be cared for within Early Pregnancy Units [
The participants underlined the need for empathy and recognition for their illness. This corresponds with existing literature. For example, the study by Munch [
Participants believed that medical intervention and nasogastric tube feeding, introduced at an early point in treatment, are helpful by avoiding weight loss, repeated admissions, and general weakness. Our participants’ opinion is at odds with the findings from the first RCT into the potential benefits of early nasogastric tube feeding, which demonstrated no benefit in an unselected population of women admitted to hospital for HG [
Participants indicated that certain stimuli, in particular smells, provoked vomiting and aggravated their disease. Olfaction is indeed thought to be a strong trigger for NVP symptoms [
HG had a large psychological impact on our participants. According to them, psychological support, during pregnancy and afterwards, is essential. Previous studies also described this psychological impact: McCormack et al. [
Physical support after childbirth, for example, by a dietician and/or physiotherapist was also valued. Again, these aspects of care have not been assessed in clinical trials. Furthermore, participants suggested providing uniform information about the course of HG in leaflet form to all patients, managing expectations of family, friends, and colleagues. Finally, patients’ call for more uniformity could be achieved by a national guideline. At the time of our survey, Netherlands lacked one. Three factors may have contributed to this. First, until recently, there was lack of aggregated evidence on the efficacy of various treatment options for HG. The Cochrane review [
The purpose of this study was to explore the experiences and preferences of HG treatment of women suffering from HG over the past 4 years in order to improve HG care. Patients stressed the need for more knowledge among caregivers and early recognition and medical intervention. Also, a number of organizational aspects including admission in a single room, home-care options, and more support after admission were mentioned. Further research needs to be done to establish whether these suggestions can indeed lead to more (cost) effective care and could improve the course of HG as well as outcomes for HG patients and their children.
The authors report no conflicts of interest.
The authors thank the women who took part in the study and Ms. Rosa Overbosch for helping them with the recruitment of participants.
Supplementary information file 1: “Call for participation in research for HG treatment”: our call for participation posted on Facebook and home page of ZEHG, the Dutch HG patient foundation. The original document is written in Dutch followed by English translation below.
Supplementary information 2: “Topiclist”: the interviews started with the question “What were your experiences with the treatment you received for HG?”. Supplementary questions were asked based on this topic list and the observer used them to check whether all topics had been addressed. The topic list was updated continuously with the frequently named and emphasized topics from previous interviews.