Women's Experiences of Preeclampsia: Australian Action on Preeclampsia Survey of Women and Their Confidants

Introduction. The experience of normal pregnancy is often disrupted for women with preeclampsia (PE). Materials and Methods. Postal survey of the 112 members of the consumer group, Australian Action on Pre-Eclampsia (AAPEC). Results. Surveys were returned by 68 women (61% response rate) and from 64 (57%) partners, close relatives or friends. Respondents reported experiencing pre-eclampsia (n = 53), eclampsia (n = 5), and/or Hemolysis, Elevated Liver enzymes, and Low Platelets (HELLP syndrome) (n = 26). Many women had no knowledge of PE prior to diagnosis (77%) and, once diagnosed, did not appreciate how serious or life threatening it was (50%). Women wanted access to information about PE. Their experience contributed substantial anxiety towards future pregnancies. Partners/friends/relatives expressed fear for the woman and/or her baby and had no prior understanding of PE. Conclusions. The PE experience had a substantial effect on women, their confidants, and their babies and affected their approach to future pregnancies. Access to information about PE was viewed as very important.


Introduction
Preeclampsia (PE) is a pregnancy specific, heterogeneous, multisystem disorder, which has the classic clinical features of pregnancy-induced hypertension and proteinuria and may lead to eclampsia (E) [1][2][3]. The presence of pregnancyinduced Hemolysis, Elevated Liver enzymes, and Low Platelets (HELLP syndrome) may also be classified as a form of preeclampsia [4]. Preeclampsia, eclampsia, and HELLP syndrome are a significant cause of maternal and perinatal morbidity, mortality, and iatrogenic premature delivery [5], with long-term health effects for both mother and child [6,7]. Considerable research efforts have resulted in improved understanding of the genetic basis of preeclampsia [8], exploration of numerous possible predictors of the disorder [9], and resulted in the use or nonuse of diverse treatments [10][11][12][13][14][15][16][17][18]. Of these possible treatments, antihypertensive medications and magnesium sulphate are widely used in developed countries and in some developing countries [19]. Delivery of the baby, placenta, and membranes, indicated for maternal or fetal reasons, remains the only method for resolving preeclampsia, although it does not immediately remove all risks of mortality and morbidity, particularly in the early postpartum period. Thus, there is considerable understanding of the genetic, pathophysiological, and clinical manifestations of PE, effective treatments, and long-term physical effects.
There is, however, a paucity of published research on women's perceptions of their experiences of PE, which may impact on their lives well beyond delivery and the puerperium. Research in this area has largely focused on the relationship of PE to posttraumatic stress disorder (PTSD). Poel et al. [20] surveyed a single tertiary hospital's inpatients with PE and found that 18% of patients with PE required a referral to a psychologist for dysfunctional coping, and this included 3% who were diagnosed with PTSD. Van Pampus et al. [21] detailed three women's experiences with severe PE and highlighted the heavy burden patients with PE may have-not only a serious illness in the mother, an unexpected and potentially medicalized delivery, but also often a premature baby, all of which are hypothesised to have a trend toward association with PTSD.
The experiences of eight women with severe early onset preeclampsia were explored in a qualitative study [22]. Common themes in these families included a feeling that something was not right in the pregnancy, feeling a loss of control or "thrownness," fear for the baby's prematurity, loss, guilt, and the challenge of the illness and recovery itself. It is interesting that even though PE is actively screened for at each antenatal visit with at least a measurement of the woman's blood pressure, the diagnosis still came as a complete shock to the majority of women studied.
Cowan [22] acknowledged that it is the atypical and variable nature of PE that contributes to patients having a frustrating experience with their diagnosis. Often during the initial phase when PE is evolving, women may have vague symptoms, and there may be many visits before the diagnosis is actually determined. Women who have atypical presentations in particular, such as the absence of proteinuria in HELLP syndrome, may have a delayed diagnosis and further frustration with their medical care. Antenatal hospitalisation for conditions such as preeclampsia has also been suggested to lead to maternal identity change which may have ongoing psychological consequences [23].
The consumer group, Australian Action on Pre-Eclampsia (AAPEC) [24], is a voluntary organisation set up to provide support and information to families who have experienced PE/E. It also aims to educate, inform, and advise the public and health professionals about the PE/E.

Materials and Methods
The AAPEC executive, including the then President (K. Conway), Medical Advisor (S. Brennecke), Midwifery Advisor (C. East) and several active members, formed a working party to develop a survey to gain a general overview of how PE was experienced by their membership and help AAPEC better meet the needs of current and future members. Further input from a critical care obstetric viewpoint (W. Pollock) was also obtained.
The key themes from the work by Cowan [22] were supplemented with themes identified by the working party, to develop relevant questions. Considerable attention was given to the inclusion of questions about the death of a member's baby, with wording developed and piloted by members to ensure appropriateness. Women whose baby had died during or following a pregnancy complicated by PE were invited to complete further questions as they chose. Questions about mothering, for example, were completed by some who lost their baby and also by those who may have subsequently had a baby. All questions were piloted among a small group of members, and their feedback was incorporated into the final survey.
The questions sought information about the woman's PE/E, history, timing of diagnosis of PE/E and outcomes, including level of clinical care for the mother and baby (for example, admitted to an intensive care unit). We sought to quantify women's level of knowledge, prior to diagnosis, of their potential to develop PE/E and the implications that such a condition could have for themselves and their babies, as well as their level of acceptance and understanding of the diagnosis once made. Several questions explored aspects of feeling in control of their lives and destiny, whether women considered that clinical staff believed them when they presented with symptoms and women's understanding of how sick they were. Further thematic exploration involved the implications of premature and/or emergency delivery and how women coped with separation from their baby, due to their own or their babies' health needs. We also sought information about women's sense of self-worth, mothering ability, and recovery from the illness, how they  perceived their experience had affected or might influence their decisions and care for future pregnancies, as well as what information they would have found beneficial before and following the development of PE/E. Response options included "strongly agree," "agree," "disagree," "strongly disagree," or "undecided"; "none," "a little," "very little," "not at all," "undecided," as appropriate. Results were summarized in order to simplify them and highlight the more meaningful findings, for example, "strongly agree" and "agree," or "disagree" plus "strongly disagree," as appropriate for each question.
A section of the survey was devoted to exploring the perceptions of one of each woman's social contacts, including, as selected by each woman, her partner, close family member or friend. We sought to elicit how these confidants felt about the likelihood that PE/E could develop, specifically for someone they know, fear about outcomes, including death of the woman and/or her baby and feeling that they may or may not have known what to do to help.
The surveys, with an accompanying information sheet and reply paid envelope for return, were posted to each of the 112 AAPEC members. A follow-up survey was posted approximately six weeks later, to enhance the response rate. No identifying data were noted on the survey and a unique identifier was allocated to all returned surveys. Consent was implied by return of the survey, and the project was approved by the Royal Women's Hospital Human Research Ethics Committee.
Data were entered onto a database and analysed using descriptive statistics (Microsoft Access, Microsoft Excel, Microsoft Corp, Redmond, WA; SPSS version 16.0 software, SPPS Inc, Chicago, IL, USA).

Results
Surveys were returned by 68 women (61% response rate) and from 64 partners, close relatives, or friends (57% response rate). Characteristics, outcomes, and responses are provided in Tables 1 and 2. Respondents reported experiencing preeclampsia (n = 53), eclampsia (n = 5), and/or HELLP syndrome (n = 26) within a median of four years prior to the survey (range 1 to 47 years). Many felt that "something was not quite right" and, once diagnosed, that this could not be happening to them. Although only 19% did not believe the initial diagnosis, 51% of respondents thought that PE was not serious or life threatening (Table 2). Fifty eight women had given birth prematurely (between 30 weeks and 36 weeks 6 days, n = 31; before 30 weeks, n = 27), and eighteen babies had died (Table 1). Most women whose babies had died noted that they felt well supported by hospital staff (n = 14). Women felt that their experience with PE had a substantial effect on their anxiety towards future pregnancies and the level of medical care for subsequent pregnancies.
Partners/friends/relatives expressed fear that the woman and/or her baby could have died, that they had no prior awareness of PE, and that they did not know what to do to help (Table 3).

Discussion
The PE experience had a substantial effect on women, their confidants, and their babies in the index pregnancy. The diagnosis was a shock to many respondents, and there were elements of denial of the severity of the condition until after the event. Prior to the diagnosis of PE, many women may have never experienced a significant illness and had been expecting a routine, normal pregnancy. Many of the experiences recounted by the women were emotionally intense and can be interpreted in the context of anxiety, depression, and posttraumatic stress disorder [21,25]. Several of the known risk factors for PTDS were elicited, including feelings of loss of control over their situation and obstetric procedures, commonly induction or caesarean section at an earlier time point than expected had the pregnancy been normal and, for some, extremely premature [21,25]. For other women, the emotional intensity of the experience may not have equated with a diagnosis of PTSD, but our findings indicated that it was no less important for the individual woman and her support network.

5
The experiences of women whose babies are cared for in the neonatal intensive care nursery, including those born preterm, have some similarities, particularly issues of bonding when the infant is too small or too sick to be breastfed or handled. The provision of emotional support to the mother is often rated very well in the intensive care setting [26] and forms an important component of processing the feelings engendered by the experience [27]. Women in our survey reported that their experience with bonding was not only limited by the baby's health but also their own, with some women being in intensive care settings themselves. Further exploration of women's experiences using qualitative methodologies may provide additional insights to identify and promote interventions to assist with this.
The PE experience affected how women approached future pregnancies, as well as the level of medical care and choice of hospital for the subsequent pregnancy and birth. This has implications for the provision of antenatal and birthing services for the small percentage that may experience PE in a subsequent pregnancy [28]. Australia's population is largely clustered around the major cities, with concurrent centralisation of specialty healthcare facilities in these cities. Women requiring more intense surveillance throughout pregnancy who reside in regional centres may have been transferred to tertiary facilities in their index PE pregnancy, including the baby requiring neonatal intensive care in a tertiary setting. These women may need to relocate to be near a specialty healthcare facility for at least some of their subsequent pregnancy including possible induction of labour [26]. Such a move has major social and financial implications for the woman and her family-removing the woman from her social context at a time when her emotional needs are as important as her physical needs, and those of her baby only serve to perpetuate the cycle of morbidity and the potential for nonresolution of posttraumatic stress disorder if that is a feature for her. Studies of paternal experiences supporting their partner during pregnancy and childbirth have identified themes of feeling helpless, lacking knowledge, and potentially altering their relationship with their partner [29]. The experiences reported by the respondent's partner, close friend, or family member mimic those of the social networks of critical care patients, including the need to work through the shock of receiving the news, uncertainty surrounding the potential outcome for mother and baby, provision of adequate information, and involvement in decision making and moving on [30,31].
Access to information about PE was viewed as very important. The origins of AAPEC [24] lie in women's perceived need to access information at a time when internetbased sites and hard copy publications were less prolific than they are now (personal communication, 13 October 2010). Although numerous sites can now be accessed with a simple online search, the quality and readability of information need to be appropriate for women with varying levels of health literacy [32].
This survey examined the experiences of PE within the AAPEC membership, with a reasonable response rate of 61%. Women who seek membership of such a consumer organisation and who respond to this type of survey may not be representative of all women who experience PE, and more research is required to examine the impact of PE on women and their confidants in the broader maternity services sector.

Conclusion
The responses to this survey from women and their partners, close relatives, or friends indicated that the experience of PE was viewed as very important to all and traumatic to many. The provision of information and support was valued prior to and at the time of diagnosis and needed to be revisited during ongoing care. Referral to consumer groups such as AAPEC [24] may be beneficial. Further research may consider the experiences of women and their confidants closer to the time of the PE experience.