Table 2 Characteristic of included studies

1

Brewer et al, 2015 [31] USA

To evaluate the extent to which The Pre-eclampsia Registry responded to narrative inquiries and to ascertain the depth of information related to patient education. Online USA.

Online open ended questionnaire with free text format included for one question about patient education. Retrospective questionnaire.

807 participants, 301 provided a response for a total of 355 pregnancies.

Additional information for women with pre-eclampsia was identified by 241 participants:

Themes identified included:

• Symptoms

• Definition of preeclampsia

• Improved provider communication

• Risk factors for preeclampsia

• Postpartum preeclampsia

• Closer monitoring

• Psychological support

• Complications

• Dietary concerns

5

2

Harris et al, 2014 [39] UK

To investigate the potential psychological impact of providing pregnant women with formal risk information for an antenatal screening test for pre-eclampsia. One London NHS trust.

Cross-sectional semistructured interview study of women who had first trimester preeclampsia screening test.

Retrospective interviews at 16 weeks gestation.

15 primigravida women, who had high risk results and 5 with low risk results at 12 week pre-eclampsia screening.

Two types of coping typologies regarding risk information for preeclampsia;

“Danger Managers” who were focused on risk that pre-eclampsia posed to them and exhibited information seeking, positive behaviour changes and cognitive reappraisal coping mechanisms.

Fear Managers” who had an external sense of control and focused on the risk that pre-eclampsia posed to the foetus and exhibited avoidance coping mechanisms.

3 others themes emerged, medicalising pregnancy, embracing technology and acceptability.

4.5

3

You et al, 2012 [36, 37] USA

To explore the extent to which pregnant women understand the symptoms and potential complications related to pre-eclampsia and to determine the factors that are associated with better understanding.

A university clinic in USA

Face to face survey with one open ended question with free text.

Convenience sample of 112 women recruited between 18 and 40 weeks gestation. 110 completed survey.

The survey identified a poor understanding of preeclampsia with a knowledge deficit. Factors associated with a greater understanding of preeclampsia were higher literacy, multiparty, history of preeclampsia, a receipt of information about preeclampsia from a clinician or another source.

5

4

Vasconcelos de Azevedo et al, 2011 [38] Brazil

To understand the meaning of preeclampsia for pregnant and postpartum women 5and health care professionals

Antenatal clinic and admissions unit of a public maternity hospital

Word association test and semi structured interviews.

51 pregnant women, 10 postpartum women, 87 health professionals completed word association test. 18 women, 2 postpartum women and 20 health professional were interviewed.

Thematic categories based on word association test and the interview were created to help the data analysis. The results together demonstrate that pregnant and postpartum women had no information about preeclampsia.

The meaning of preeclampsia to pregnant and postpartum women were fear, risk, care and late of information.

For health professionals the meaning were care, fear, risk, high blood pressure, oedema and proteinuria.

4.5

5

Barlow et al, 2008 [38] UK

To document women’s experience of admission to hospital with a pregnancy related complication, hypertension from their own perspective

One UK Maternity inpatient ward

Qualitative descriptive study semi structured contemporaneous interviews with women after sudden and unexpected admission with high blood pressure, and for some additional symptoms such as proteinuria and or oedema.

12 women, two with diagnosis of pre-eclampsia at time of interview.

Search for meaning : 7 women had not noticed signs and symptoms and some felt frauds being admitted. 5 women had noticed not feeling well, reduced fetal movements and two had had previous pre-eclampsia and were anxious and uncertain.

Attribution to causality : Some felt they had tried to relieve stress in their lives, so could not understand why their blood pressure had been raised, others described stressful events and felt this may have contributed to admission.

Information needs : Women valued being told the truth about their care pathway with diagnosis but some women felt they were not given enough information and were reluctant to ask staff questions. They reported being anxious and scared. Inconsistent information from different staff members was noticed.

Social factors : All women felt it important to have the support of their partner/husband and other family members. Seeing women go the delivery suite and to return with a healthy baby was reassuring whereas seeing women return for a caesarean with catheters and drips was seen as “scary”.

5

6

Kalim et al 2009 [32] Bangladesh

To assess differences in knowledge and care seeing behaviour in two districts of Bangladesh. Jessore, a high performing district of the country with higher literacy levels and lower maternal mortality ratio in comparison to a lower performing district of the country, Sylhet.

Mixed qualitative methods including free listing, rating exercises, hypothetical case scenarios and in depth interviews exploring the most commonly perceived complications, their relative perceived severity, knowledge of about signs and symptoms, care seeking behaviours related to PPH and eclampsia. Retrospective interviews at unknown time limit after event.

118 women in total partook in studies, 40 regarding danger signs and care seeking for preeclampsia.

For women in low and high performing districts performing districts identified both PPH and eclampsia as life threating complications.

Understanding and knowledge; In both districts women appeared to have a basic understanding of how to treat complications and where and were to take women for treatment, however in real life case studies there were major differences between their understanding to the conditions and care seeking behaviours in response to both PPH and eclampsia which could contribute to the high rate of maternal deaths associated with both conditions.

Social and economic disparities affecting help seeking behaviour; There were differences in care seeing practices in the two districts possibly reflecting social cultural differences, disparities in economic and educational opportunity and discrimination in the availability of care.

4

7

Lima de Souza et al 2007 [33] Brazil

To analyse maternal experiences of preeclampsia pregnancy with premature birth at a neonatal intensive care unit.

State Hospital specialising in high risk pregnancies Brazil.

A qualitative study using focus group technique of women who had experienced pre-eclampsia with a premature birth. Retrospective focus groups whilst babies were still inpatients.

28 women who had experienced preeclampsia in pregnancy with a premature birth.

Themes included information on preeclampsia during prenatal care, experiences with a child in NICU, mother’s perception of NICU professional attitudes.

Information about pre-eclampsia; it emerged from interview that women were unaware of pre-eclampsia which may have contributed to deficient preventative care and even to early hospitalisation. They only became aware after hospitalisation or by imminent premature delivery. Women feared their death or of losing their child.

Mothers experiences with a child in NICU; First visit was often associated with shock, sadness and despair. During NICU daily routine difficulties were reported on not being able to hold child and seeing intensive treatments. Conflicts arose between home and hospital activities. Women also discussed joy of bonding with the child when first held their babies and when phototherapy and IV tubes were removed.

Mothers perceptions of NICU professional attitudes; Difficulties were identified regarding for caring the child in the neonatal care unit accentuated by communication flows between health professionals and users.

5

8

Macgillivray et al 2004 [34] Jamaica

To assess the efficacy and acceptability of a patient held pictorial card aimed at raising awareness and appropriate health seeking behaviour response to prodromal symptoms of imminent eclampsia. Antenatal clinics in Jamaica.

Survey and contemporaneous and retrospective unstructured face to face interviews with staff and eclampsia cases postnatally. Time scale not given when interviews took place.

192 mothers were surveyed before distribution of maternal pictorial card with preeclampsia symptoms, and 134 after. 3 women were interviewed who had eclampsia after card distribution. 18 health care workers were interviewed in five antenatal clinics and obstetric team in a hospital.

Survey showed a mother’s awareness and response to symptoms improved significantly with use of pictorial information cards, posters and education of signs and symptoms of pre-eclampsia and there was a significant drop in eclampsia incidence.

Post education programme there were 3 cases of eclampsia noted:

Case 1 had not received the card at her antenatal clinic and had not seen a poster.

Case 2 had a card and recognised the symptoms but went to her community health neighbour next door, delayed going to hospital and convulsed.

Case 3 was a young teenager who reported symptoms to the high risk clinic but was told to bed rest and return again in 1 week. At the time the condition of the referral hospital were overcrowded.

Interviews with health care workers identified that they felt the card had enabled mothers to recognise symptoms that should be acted upon and had the unexpected benefit of giving a focus for discussion when the health care workers saw mothers in the antenatal clinic as well as improving their own knowledge of when to act.

4.5

9

Harrison et al, 2003 [40] Canada

To examine women’s experiences of and satisfaction with their involvement with health care decisions during a high risk pregnancy.

A Western Canadian City.

In depth open ended semi structured interviews one month after birth with women who had experienced hypertension or threatened preterm delivery.

47 women; 16 women received in home care through a community programme, 15 hospitalised care and 16 women with in home care for index pregnancy and in hospital management of a previous pregnancy. 26 women had pregnancies threated by preterm delivery, 17 had hypertension and 4 had hypertension and preterm delivery.

Women felt an increased feeling of responsibility for the health of their baby and themselves. They exhibited two approaches to decision making; active partners; and passive involvement.

Women who wanted active involvement; achieved it through one of 3 processes; struggling for, negotiating or being encouraged.

Women who wanted more passive involvement; and women facing health crisis used the process of trusting the experts of nurses and physician.

Women were satisfied if the care from the health professional was congruent with how they wanted to be involved in decision making.

5

10

Kidner et al, 2004 [41] USA

To describe the experience of mothers whose pregnancies were complicated with HELLP syndrome and to determine if such experiences could be clustered by common themes from which a model could emerge.

USA, home telephone interviews in urban and rural settings.

Descriptive home telephone interview qualitative study of survivors of HELLP syndrome

Retrospective interviews at 15 months to 13 years post delivery, with 2 years being the mean.

9 self-selected survivors of HELLP syndrome.

Participants expressed a loss of control and now knowing. 5 themes were identified; premonition, symptoms, betrayal, whirlwind and loss.

Premonition; Just feeling something was not right.

Symptoms; symptoms described as back pain, fatigue, not feeling well, shortness of breath, abdominal. Pain, vomiting, severe upper quadrant pain.

Betrayal; women reported being led astray and deceived and having their concerns viewed as worthless. They reported a sense of betrayal for trusted women, health care providers and their own bodies.

Whirlwind; with recognition and diagnosis of HELLP syndrome physicians initiated an intensive whirlwind of activity to save mother and baby.

Loss; loss and grief caused by HELLP syndrome delivery that was so different form the expected pregnancy outcome.

Emotions expressed were fear of death, frustration, anger and guilt.

5