The Experience of Anaemia and Ingesting Oral Iron Supplementation in Pregnancy: A Qualitative Study
Written by F.E O’Toole1, 2, E. Hokey1, F.M McAuliffe1,2, J.M Walsh1,2
1 UCD Perinatal Research Centre, University College Dublin, National Maternity Hospital, Dublin, Ireland
2 National Maternity Hospital, Dublin, Ireland
Highlights
• Qualitative research exploring anaemia and supplemental iron in pregnancy.
• Gastro-intestinal side-effects and forgetfulness negatively impact compliance.
• Improvement in symptoms, routine and alternate day dosing all aid compliance.
• Patient knowledge on possible negative sequelae of anaemia was limited.
Introduction
Iron deficiency anaemia is the most common haematological problem in pregnancy. It affects approximately 38 % of women in pregnancy globally. Crosssectional data from fifteen European countries gives a prevalence of iron deficiency anaemia in pregnancy of 35 %. Prevalence of iron deficiency anaemia in pregnancy from an audit encompassing 86 maternity units across the United Kingdom and Ireland was 30.4 %. It remains a common problem in Western well-nourished nations despite these countries being much less afflicted by helminths, malaria or haemolytic conditions.
Significant adverse pregnancy, maternal, foetal, neonatal and childhood outcomes are associated with iron deficiency anaemia. Maternal complications include fatigue, post-partum haemorrhage, increased risk of caesarean section, postpartum anaemia, blood transfusion, and labour induction. Infant complications include preterm birth, low birth weight infant, increased risk of stillbirth, lower Apgar scores at delivery and increases in perinatal and
neonatal mortality. Symptoms of anaemia include fatigue, breathlessness, and dizziness. Postpartum anaemia has been linked to depression, fatigue, lactation failure and early cessation of breastfeeding. Maternal anaemia has also been associated with behavioural and neurodevelopmental abnormalities in offspring.
Iron deficiency anaemia in pregnancy has a multitude of contributing causes including physiological changes and inadequate nutrient intake, rates will depend on baseline iron stores pre-conception. Women of reproductive age are at increased risk of anaemia due to menstruation. Acute blood loss can also occur from miscarriage, placental events such as abruption or praevia or recent childbirth resulting in postpartum haemorrhage. Both breastfeeding and pregnancy deplete maternal iron stores. The iron demands of pregnancy can cause an iron deficit even in iron-replete women. Insufficient dietary iron intake may compound the problem.
Iron deficiency anaemia in pregnancy can be challenging to treat. The hormonal and physiological effects of pregnancy predispose women to slowed gut transit, hemorrhoidal disease, heartburn, nausea, vomiting. Oral iron supplementation is the recommended first-line treatment and is often commenced as both a diagnostic and therapeutic trial without further investigations, as iron deficiency is commonly the underlying cause of anaemia. The commencement of oral iron in pregnancy may exacerbate pre-existing pregnancy-induced gastro-intestinal disturbances or may cause new unpleasant gastrointestinal side-effects to include nausea, vomiting, constipation, abdominal discomfort, and black stools. Advice on optimal absorption of oral iron will typically be to take in the morning, on an empty stomach and with a
source of vitamin C. Women are generally advised to increase their dietary iron and often given advice on foodstuff that may hinder absorption. Compliance with treatment can be limited secondary to side-effects, among other factors.
Rates of iron deficiency anaemia in pregnancy appear to be relatively unchanged over the past two decades, despite treatment being affordable, accessible and in theory straight-forward. The World Health Organization Global Health repository data only demonstrated a 4 % reduction over a twenty-year period to a prevalence of 37 %. The 2017 World Health Organization Global Nutrition Targets include a 50 % reduction of anemia in women of reproductive age by 2025.
There a paucity of published qualitative data from higher income countries on women’s experience of taking oral iron in pregnancy. This study was performed to examine the lived experience of ingesting supplemental oral iron to treat anaemia in pregnancy. We specifically wished to explore women’s awareness and experience of this problem both before and during pregnancy, their awareness of any potential negative sequelae of untreated anaemia, how they felt about the role of diet in its management, and what factors contributed negatively or positively to their compliance with oral iron supplementation in pregnancy. Feedback was also sought on acceptability of a proposed randomized controlled trial of daily versus alternate day oral iron for the treatment of confirmed iron deficiency anaemia in pregnancy. This project successfully answered these research questions.
Materials and methods
Recruitment for this qualitative study performed between 4th November 2021 and 17th December 2021. Ethical approval
was obtained in advance of recruitment by the National Maternity Hospital Research Ethics Committee (EC23.2021). Informed written consent from each participant was obtained in advance of an interview. Pregnant or recently pregnant women who required iron supplementation in pregnancy were invited to take part in interviews. Women were invited to participate in the study via social media channels such as on the UCD Perinatal Research Centre Twitter account and women were also approached for study participation during antenatal hospital visits. Ethically approved patient information leaflets on the study and study-specific consent forms were provided in advance of participation and an opportunity to ask questions was provided.
Interviews were audio-recorded virtually or in person using the audio function in Zoom (Zoom Video Communications Inc. 2016). Interviews were then transcribed using Sonix (Sonix, Inc. San Francisco, 2021). To ensure patient confidentiality all transcripts were anonymised and allocated a unique study identifier (P1–P14) and the audio files were destroyed. Interviews were carried out by one member of the research team (FOT). This researcher was a female obstetric trainee performing research as part of an MD thesis. There was no prior relationship with any of the interviewees. Participants were provided with clear typed information regarding the study and the researcher’s background and role as part of the consent process in advance of participation. Consent forms were stored on a secure server and could not be linked to the transcripts to ensure participant confidentiality. No medical records were accessed as part of this study and participants contact details were deleted following a two-week period after the interview. Participants were offered an opportunity to review their anonymized typed transcript
for a two-week period after the interview. After this period, their contact details were destroyed as per the consent form and planned management of their data.
The interview took the following format: an interview tool comprising of 5 open-ended questions for semi-structured interviews was developed by the research team. Interview length varied between 14 and 17 min duration. There was scope for exploratory questions on new themes. Open-ended questions were asked of each participant surrounding their awareness of iron deficiency anaemia both before and during pregnancy, their knowledge of its symptoms and of potential sequelae, how big a role they felt diet played as part of management, and their experience of taking iron tablets in pregnancy. Factors affecting compliance with oral iron supplementation were explored. Finally, each participant was asked about how acceptable they felt participation in a randomized controlled trial of daily versus alternate day iron would be to other women. Details of what participation in the trial would involve was outlined and feedback was sought on how acceptable they felt this would be.
The anonymized transcripts were then analysed separately by two members of the research team (EH, FOT). Data saturation was felt to be reached with clear recurring themes. Individual analyses were compared, and agreement of themes and subthemes was reached through discussion. Rigour in the analytic process was ensured through review and confirmation of themes by other members of the team (FMcA, JW).
Main findings
Overall, there appeared to be a varied awareness that iron deficiency could become a problem in pregnancy. Prior awareness was sometimes from previous personal experience, and often from anecdotal reports from friends or family who had previously been pregnant. Personal experience ranged from experience of anaemia as a teenager, vegetarianism, and during work-up for a history of subfertility. Often, however, it was their first pregnancy that initially highlighted the problem to them. Women described being warned of it as a potential problem more in their initial pregnancies:
P8- “I did have people telling me in the first pregnancy that I looked pale, and they were like you’re anaemic. You need to take iron. Other Mums were telling me.”
P13- “I was aware, because of all my sisters who’ve gone through pregnancy. I know it’s quite common now.”
With regards to participants’ experience of symptoms of iron deficiency anaemia in pregnancy, significant and depleting fatigue was a recurring theme. Women described it as a more severe fatigue than previously experienced:
P2- “I was absolutely exhausted and the tiredness, it’s just inexplicable if you’ve never been pregnant. It’s a completely flattening experience.”
Knowledge and awareness on the potential effects of untreated anaemia on the pregnancy and baby were limited. Participants did not demonstrate good knowledge on the potential negative consequences/sequelae for themselves in their pregnancy or afterwards in the postpartum period. Awareness and knowledge of potential foetal sequelae such as childhood iron deficiency was poor:
P8- “No actually, I don’t. I’m not aware of any of the effects in pregnancy of untreated anaemia for me in pregnancy or for the baby in the long-term.”
With regards to the lived experience of ingesting oral iron in pregnancy, the unpleasant side-effects of ingesting oral iron were a commonly recurring theme. Constipation and nausea appeared to be the most frequently described and troublesome:
P2- “It did not agree with me at all, it was absolutely horrendous to take. I got constipation, I got heartburn. It just really played havoc with my digestive system. Made me nauseous if I took it without food, it was really hard. It was really unpleasant to take.”
P12- “It helped me, but the sideeffects were horrible. It’s not nice to be constantly sick for 50 days.”
Barriers and enablers to oral iron supplementation in pregnancy were explored in this study.
Gastro-intestinal side-effects featured heavily in the interview transcripts and appeared to contribute to poor compliance with oral iron supplementation in pregnancy. Forgetfulness also negatively impacted compliance. One participant commented that the cost of a more expensive brand of iron supplementation influenced compliance. A prior experience
of poorly tolerating oral iron in the past also caused hesitation with compliance.
Factors that positively affected compliance included a noticeable or anticipated improvement in fatigue with oral iron supplementation. The benefit of a routine with ingestion of oral iron was also cited as an aid in terms of assisting compliance. A fear of worsening symptoms of anaemia and a desire to avoid the risks of a blood transfusion were other factors which appeared to motivate compliance with oral iron therapy. There was also evidence that reduced dose frequency positively impacted compliance with oral iron supplementation.
Pregnancy as motivating factor recurred as a theme in analysis of the interviews. Participants felt that most women were highly motivated to do everything in their power for the best possible outcome for themselves and their baby. This effect was described as greater than any motivation for compliance with treatment outside of pregnancy.
P6- “I presume, like most women, when they’re pregnant, you just want to do the best thing for your health and the baby’s health. In more normal times… I probably wouldn’t have been as compliant, but I think being pregnant, you just want to look after yourself and the baby. So that was definitely a motivating factor.”
P2- “I didn’t object to taking them because you do take whatever you need to take. You know, whatever they tell you. They tell you; you need coal. You’re going to take the coal. Your motivation is high in pregnancy.”
In terms of the role of diet in the management of iron deficiency anaemia in pregnancy, participants’ knowledge and awareness of iron-rich foods was generally good. There also was evidence that women believed and understood that diet alone would not rectify their anaemia:
P4- “For me, dietary stuff was ineffective. I’d go for all the ironrich foods, and it was just neglible. It was just the impact was too tiny for the mountain I was trying to climb.”
Pregnancy symptoms and nausea negatively impacted appetite for some women. For some, they felt a reliance on supplementation due to this. Knowledge of facilitators and inhibitors of iron absorption was also widely good.
Themes that emerged in relation to trial acceptability included the benefit and attraction of extra supportive care in pregnancy and
the time constraints women can be under. Participants highlighted the demands on women’s time and to try to work around this for convenience for any trial participants. Pregnancy alone requires planning for regular and frequent appointments in women who have busy lives and would not otherwise require planning for regular medical appointments outside of pregnancy.
The proposed trial generally received very positive feedback with participants feeling that this was an important area of research:
P1- “I think this trial is very important and it sounds like it’s going to be very educational for women in the longer term.”
P5- “I think it’s a very interesting study. So very, very much needed… I’m happy you are working on it”
P6- “There doesn’t seem to be a particularly large burden on the participants, and I think that it would be largely acceptable.”
There were mixed responses to the acceptability of taking alternate day versus daily iron. Some women felt alternate day iron would be acceptable and potentially beneficial for that arm of the trial. However, there was doubt among some participants about the willingness of patients to accept alternate day iron over daily iron.
Main findings
Themes of awareness, compliance, the role of diet and pregnancy as a motivating factor recurred throughout our analysis. Fatigue emerged as the predominant and most troubling symptom. Knowledge and awareness of possible adverse consequences of iron deficiency anaemia in pregnancy were poor. Significant unpleasant gastro-intestinal side-effects appeared to be experienced widely among interviewees and affected compliance. Factors that positively impacted compliance with oral iron supplementation included routine, a perceived or historical improvement in symptoms with supplementation, reduced dose frequency and a desire to avoid both worsening symptoms of anaemia and a blood transfusion.
Clinical significance
Awareness pre-pregnancy of iron deficiency anaemia varied in our cohort. When present, it stemmed from personal experience of friends and family and anecdotal advice. However, knowledge on symptoms and the potential need for iron supplementation in pregnancy was generally
good. First pregnancy also appeared to be a time when women noticed an emphasis from health professionals on the problem. This may possibly be explained by health providers assuming prior knowledge from previous pregnancies in multiparous women. Participants knowledge on both iron-rich diets and foodstuff that could impact iron absorption was also good. This may be due to the population in our catchment area being generally well-educated, from a higher socio-economic background and the mean age of our participants being 36. The appreciation that an iron-rich diet alone was not sufficient to rectify anaemia in pregnancy appeared to stem from personal experience of increasing dietary iron with no noticeable improvement in symptoms:
P4- “For me, dietary stuff was ineffective. I’d go for all the iron-rich foods, and it was just neglible. It was just the impact was too tiny for the mountain I was trying to climb.”
Knowledge on the possible negative sequelae of untreated iron deficiency anaemia in pregnancy however was poor. None of our participants commented on the potential for maternal complications or the negative associations including preterm birth, low-birth weight, Caesarean delivery, post-partum haemorrhage. Knowledge surrounding possible adverse outcomes for the foetus in the short and long-term were also poor. Only one participant commented on the effect maternal iron deficiency anaemia might have on the baby’s iron stores in the 6 months post-delivery.
Fatigue emerged as a pervasive and debilitating symptom women experienced with iron deficiency anaemia in pregnancy. The effects were dramatic and appeared worse than previously experienced tiredness. Significant fatigue is known to affect quality of life and increase the likelihood of depressive symptoms in pregnancy. Undetected and untreated antenatal depression is one of the strongest risk factors for postnatal depression.
The feedback on trial acceptability from our study was used to inform our design for a planned randomized controlled trial of daily versus alternate day oral iron in pregnancy. Acceptability refers to determining how well an intervention will be received by the target population and the extent to which the new intervention or its components might meet the needs of the target population and organizational setting.
It has become a key consideration in the design, evaluation and implementation of clinical trials. Positive feedback noted from this qualitative study included the benefit of extra supportive care in pregnancy and the potential to improve side-effects of oral iron for women in pregnancy. Perceived research relevance has been shown to be an important factor for clinical trial recruitment in pregnancy.
Advice on incorporating research visits with routine antenatal care and limiting extra hospital visits was used to finalise our trial protocol. Time constraints on women has been shown to be a factor affecting both recruitment and retention in clinical research trials in pregnancy.
It is useful to be aware that some participants may resist or refuse their randomized dosing regimen. Participants’ understanding that a scientific question is being answered and the nature of participation will need to be ensured prior to recruitment. Randomised trials in pregnancy face specific enrolment challenges and research in pregnancy can be limited due to an individual’s risk perception.
Altruism and a wish to contribute to scientific research has been shown to be a previous motivating factor in trial participation in pregnancy. However, key motives which have previously been identified for non-participation in clinical trials in pregnancy include a dislike for the intervention, either because of a risk of harm or due to practical considerations.
Future research
Further qualitative research in this area could focus on a younger cohort and populations from lower socio-economic groups but who are still residing and receiving antenatal care in a higher income country. Purposive sampling from ethnicities more strongly affected by iron deficiency anaemia would also be of interest to ascertain if the same themes recur and if there are any cultural differences in the analyses.
Conclusion
In conclusion, women view sideeffects as a significant barrier to taking oral iron. Informing women on the important maternal and infant complications associated with iron deficiency may prove to improve compliance with oral iron treatment. Women clearly view this topic as an important research area.
