Stop, think, reflect, realize—first‐time mothers’ views on taking part in longitudinal maternal health research

Abstract Background Longitudinal cohort studies gather large amounts of data over time, often without direct benefit to participants. A positive experience may encourage retention in the study, and participants may benefit in unanticipated ways. Objective To explore first‐time mothers’ experiences of taking part in a longitudinal cohort study and completing self‐administered surveys during pregnancy and at 3, 6, 9 and 12 months’ postpartum. Design Content analysis of comments written by participants in the Maternal health And Maternal Morbidity in Ireland study's five self‐completion surveys, a multisite cohort study exploring women's health and health problems during and after pregnancy. This paper focuses on what women wrote about taking part in the research. Ethical approval was granted by the site hospitals and university. Setting and participants A total of 2174 women were recruited from two maternity hospitals in Ireland between 2012 and 2015. Findings A total of 1000 comments were made in the five surveys. Antenatally, barriers related to surveys being long and questions being intimate. Postpartum, barriers related to being busy with life as first‐time mothers. Benefits gained included gaining access to information, taking time to reflect, stopping to think and being prompted to seek help. Survey questions alone were described as valuable sources of information. Discussion and conclusions Findings suggest that survey research can “give back” to women by being a source of information and a trigger to seek professional help, even while asking sensitive questions. Understanding this can help researchers construct surveys to maximize benefits, real and potential, for participants.


| BACKG ROU N D
Taking part in longitudinal cohort studies, research which gathers data from the same subjects repeatedly over a period of time, requires considerable commitment from pregnant and postpartum women.
While a positive experience may encourage participants to remain in the study, a negative one may lead to attrition, or even be harmful or unethical. Longitudinal cohort studies with large populations have multiple benefits, including being able to plot prevalence at different time points, study temporal changes and associations with a range

| Design
The MAMMI study is a mixed methods study incorporating selfcompletion surveys administered at five time points, data collection from consenting women's maternity records and one-to-one interviews with women experiencing a specific morbidity, for example, pelvic girdle pain, sexual health problems. It was established as an exploratory sequential design, and each strand was designed to allow the primary focus to be on either the quantitative or qualitative component. This paper is an in-depth content analysis of the comments first-time mothers wrote in the five surveys about their experiences of taking part in the research.

| Data collection
Permission was gained to modify the surveys used in the Australian Maternal Health Study (https://www.mcri.edu.au/research/projects/ maternal-health-study) for use in Ireland. All core content was retained, and the terms used to describe the health and maternity services were changed to suit Ireland. The first antenatal survey asks women about their general health before pregnancy, and all surveys include questions, organized in separate sections (strands), on urinary incontinence, anal incontinence, pain, sexual and mental health issues. Postpartum surveys also include questions on intimate partner violence. Each section provides brief information on sources of help about that specific health issue and space to comment. The final page of each survey has the heading "Comments. If you wish to write any further comments please do so on this page. Thank you." Surveys can be viewed on the study's website (http://www.mammi.i.e/surveys.php). This paper presents data from 2174 women recruited from two maternity hospital sites, one large (>8500 births per annum) and one medium (>3000 births per annum) in Ireland. The study methods, described previously, 10 are outlined below.

| Eligibility
Eligible women were aged 18 years or over and able to understand English sufficiently to complete the surveys. Women who were recruited to the study and completed the first antenatal survey were excluded from follow-up postpartum if they experienced a miscarriage, their baby was ill in a neonatal unit or had died.

| Recruitment
At their first hospital booking visit, the midwife offered eligible women the study information pack which included a letter of introduction, an information booklet outlining the purpose of the research, two copies of the consent form (one to be retained by     "On paid maternity leave," n = 15; "Unpaid maternity leave," n = 3; "Not in paid work or studying at present," n = 2; Not reported, n = 1.
d "Unpaid maternity leave," n = 8; "Not in paid work or studying at present," n = 14; "Gone back to paid employment," n = 1 (type of employment not stated).
e "Not in paid work or studying at present," n = 20; Not reported, n = 1.
TA B L E 1 (Continued) gained women's consent to being contacted by the researcher and, 1 to 2 weeks' later, the researcher phoned each woman to answer questions and ascertain if she wished to take part. Women were regarded as recruited when the signed consent form and completed antenatal survey were received. Women self-completed the surveys at home and returned them in freepost envelopes provided. No incentive was offered.

| Postpartum follow-up
Postpartum surveys were posted to women's home address 3 weeks in advance of when they were due to be completed. If a particular postpartum survey was not returned when it was due, the woman received three reminders over the following 2 months; telephone reminder, text reminder and, finally, the relevant postpartum survey was reposted. No further contact was made, and no follow-up was made to women who indicated that they wished to withdraw from the study.

| Ethical considerations
Ethical approval was granted by the university's and site hospitals' ethics committees, and all participating women gave written consent.

| Data analysis
We used a conventional approach 11 to analyse the content, that is, each participant's data were entered into one row, coded, and categories and themes identified. Data were analysed independently by MB and DD, then interpretations, codes and themes were discussed and agreed. Participants' verbatim quotations from the surveys were identified to illustrate the themes that emerged. Microsoft Excel 2013 ® software was used to manage the data.

| FINDING S
Characteristics of the 2174 women recruited are presented in Table S1, and are compared to local 12 or national data, 13 Three themes emerged: "barriers and benefits of taking part in the research"; "quality of care received" and "the pregnancy and birth experience." The proportion of comments in each survey that mentioned some aspect of the study are presented in Figure 2 and include those that simply stated comments like "Thank you for doing this research (study)." The findings presented here are based on the comments that specified some barrier to or benefit of taking part in the study.
One woman referred to a family member's illness and another, at 12 months postpartum, described herself as "exhausted." Women were not asked to give reasons, but many offered explanations;

| Benefits
Many women said they benefitted personally by having the opportunity to have their voice heard, from reviewing their own progress as they completed each survey, and from getting information.
Questions on various health issues helped many women think about and reflect on their experiences. Four sub-themes emerged: "access to information," "relaxation and enjoyment," "stopping to think" and "prompt to get help."

| Access to information
All of the surveys asked questions about several health problems, for example, urinary or anal incontinence, having pain during sexual intercourse etc., and many women said that the questions alone were a valuable source of health information; This is a nice way to get information on many things and…I have learnt a lot of things…thanks. [

| D ISCUSS I ON
Findings on taking part in research revealed some real and potential barriers and many unanticipated benefits for women. The main barriers related to the survey(s) being long, being too busy as a first-time mother to complete them on time and questions being intimate or repetitive. While others have identified lack of time or inconvenience as being a barrier to both recruitment and retention to intervention studies or trials, 7,16 many women in this study completed a lengthy survey with intimate questions during the early stages of pregnancy, despite experiencing sickness or pregnancy-related worries. Nevertheless, their comments identify potential barriers to recruiting participants in longitudinal studies during pregnancy. The fact that 87% of women completed the survey at 3-month postpartum, a time when they were busy caring for their first baby, and that 70% of them completed the 12-month survey, indicates that, once these women had given their commitment, the vast majority continued to participate. Given the high percentage of comments describing positive experiences of taking part in the study and completing surveys, this style of survey may act as an example of how to retain participants in longitudinal studies during and after pregnancy.
Four sub-themes relating to the benefits gained emerged; "access to information," "relaxation and enjoyment," "stopping to think" and "prompt to get help." Similar to Barret et al's findings 9 many women said the surveys gave them "access to information," and that they became informed by completing the surveys. Exposure to stress and adversity is acknowledged as having a negative influence on the developing foetus and child, [33][34][35][36] and the effect of information-giving on levels of pain experienced are well known. 37 In other healthcare areas, such as oncology and surgery, there is evidence to suggest that giving patients information on the procedure they are about to undergo can significantly reduce their emotional distress and improve their psychological and physical recovery. 38,39 In our study, women said the surveys gave them time to reflect on their health and life during the first year of first-time motherhood, see how much progress they had made and be satisfied knowing they were in good health. The questions on each morbidity made them "stop and think" about how they really felt.
For others, they helped them realize they had a health problem, and prompted them to take better care of themselves or seek professional help, even up to 12 months postpartum. Contrary to previously held beliefs that women's bodies return to their pre-pregnant state within 6 weeks postpartum, findings from this and other studies show that some health problems are present before women's first pregnancy, 10,40 that considerable proportions of women experience persistent and long-term morbidities [41][42][43][44][45] and that some women's health can deteriorate during the year after giving birth.
A systematic review of morbidities experienced by women who had a postpartum haemorrhage found that women who suffered problems such as coagulopathy [a disorder affecting the blood's ability to clot] (1.74 %), post-traumatic stress disorder (3%), or required readmission to hospital 1-3 months postpartum (3.6 %) described their health as "much worse than 1 year ago" (6%). 46 Women having caesarean section, in particular, have a higher readmission to hospital rate (4.33%) 47 and may suffer continuing morbidity in the first year postpartum.
Our findings add to those of previous studies in terms of research participants benefitting by gaining access to information. We also identified new information in relation to first-time mothers benefitting by "stopping to think" about their personal experience and taking time to reflect on their own health, and these findings may contribute to initiatives aimed at improving postpartum care. 48 An important new finding is that taking part in this cohort study enabled women to identify that they had a health problem, which prompted them to take better care of themselves and/or seek professional help.

| Implications
While it was gratifying that so many women benefitted simply from taking part, it is concerning that the survey content gave others information, for the first time, about common postpartum health problems. The inclusion of notices of sources of support on where to get help/advice for particular health problems was clearly of benefit to many. These findings have both practice and research implications; from a clinical practice perspective, it points to deficits in the way information is provided within maternity care. For researchers, it highlights the type and amount of information that should be given to childbearing women participating in research.

| Limitations
Findings are based on comments from first-time mothers who were taking part in a longitudinal maternal health study and are not necessarily transferrable to non-pregnant populations. Fewer women with no formal or lower secondary education commented in any survey, which limits our findings. However, findings in relation to learning new information, being offered contact details of sources of help and being prompted to seek professional help may be applicable to all women.

| CON CLUS ION
Women used the free-text section on the final survey page to say how they benefitted from taking part in the MAMMI study, or the difficulties they had experienced. As they completed the surveys, women learnt new information and took time to reflect on their health. The survey content encouraged some women to take better care of themselves and prompted others to seek professional help. If taking part in research can have such positive benefits, all researchers should find ways of making health information more available through surveys and other research tools and, in this way, enable participants to benefit personally from taking part.

ACK N OWLED G EM ENTS
We are most grateful to all the women taking part in the MAMMI study, and to the women who shared this additional information on what taking part in the study meant to them personally.

CO N FLI C T O F I NTE R E S T
The authors declare they have no conflict of interest.