Family decision making for Madurese women with pregnancy complications: a qualitative study

Approximately 15% of pregnant women will develop complications, which can result in maternal and fetal death (Noviani et al, 2020). Delays in referring pregnant women with complications for medical care remain a significant health service issue, particularly in developing countries (Sahoo et al, 2021). Delays in accessing and receiving appropriate medical care result in maternal and neonatal morbidity and mortality (Carvalho et al, 2020). Improving referral systems is an important strategy to reduce maternal mortality ratios.

The Indonesian Demographic Health Survey reported that in 2017, Indonesia's maternal mortality ratio was 305 per 100 000 live births (National Population and Family Planning Board et al, 2018). The United Nations' (2015) Sustainable Development Goals aim to reduce the global maternal mortality ratio to less than 70 deaths per 100 000 live births, with no country having a ratio higher than 140 per 100 000 live births by 2030 (Kementerian Kesehatan Republik Indonesia, 2018). In light of this target, efforts to reduce the maternal mortality ratio in Indonesia must be optimised.

Most women in Indonesia receive maternity care from either private midwives or public health centers. Midwives are required to refer pregnant women who are having medical complications and are classified as high risk to obstetric and gynecological specialists (Lestari et al, 2023). However, delayed access to medical care for pregnancy complications has a significant influence on maternal mortality (Acharya et al, 2015). The two main causes of delayed access on the part of a service user are a delay in the decision to seek healthcare and a delay in reaching a health facility (Ha et al, 2015; Aziz Ali et al, 2020). In many developing countries, including Indonesia, women are often prevented from making decisions about their own healthcare, a significant barrier to healthcare access (UNICEF, 2019). Additionally, those who are empowered to make decisions on a woman's behalf, such as a husband, parents or parents-in-law, may delay referral to healthcare (Abubakari et al, 2018; Sharma et al, 2018).

Sociocultural and environmental conditions can also affect reproductive health (Basharat et al, 2016; Fouly et al, 2023). Cultural factors may contribute to delayed help-seeking behaviour in women with reproductive health problems in Indonesia, as the predominant cultural beliefs support the use of complementary and alternative therapies (Widayanti et al, 2020). Knowledge and understanding of the community about the importance of maternal care are very important (Haque et al, 2016; WHO et al, 2019).

The majority of Madurese people are Muslim, and religion plays a strong role in society, as do traditions and cultural beliefs. In Madurese culture, maternal care is thought of in three forms: ideas, activity and artifacts (Devy et al, 2019). The form of ideas involves the belief that pregnant women and their families must always have good intentions towards other people and increase their frequency of worship by praying and reading the Qur'an to avoid interference from spirits (Devy et al, 2019). The form of activity is the belief that pregnant women should carry out activities that are beneficial for themselves and their babies, such as holding recitations to show gratitude to God, drinking herbal medicine, having abdominal massages by shamans and avoiding certain foods (Devy et al, 2019). The artifact form involves pregnant women using amulets to avoid bad luck (Devy et al, 2019).

The Madurese community also has strong family systems, and decisions related to a person's health are often discussed with the extended family. These family decision-making processes can lead to delays in seeking and accessing appropriate healthcare (Chi et al, 2015; Suryana et al, 2018). The present study aimed to explore family decision-making processes for supporting women with pregnancy complications to seek healthcare in Madura. The results could provide an overview for health workers to develop strategies to reduce maternal mortality.

Methods

This study used a qualitative phenomenological approach, which is used to investigate a particular event, in terms of what and how the experience was perceived, from the perspective of those who experienced it (Neubauer et al, 2019). The study explored participants' experiences through in-depth interviews with midwives, mothers, and family members, seeking to understand the processes involved in deciding to seek healthcare for women with pregnancy complications.

Participants

The participants were recruited using snowball sampling. Initially, the researchers approached a midwife who was responsible for maternal and child health at a community health center in Madura. Midwives are key personnel in maternity services in Indonesia as a result of the Village Midwife Program launched in the early 1990s, which aimed to place a trained midwife in rural areas of Indonesia to provide primary healthcare for women (Triyana, 2016). A total of 10 midwives were recruited from other public health centres, based on contact with the initial midwife. The midwives provided the names and addresses of women who had experienced pregnancy complications and were referred to higher healthcare facilities. The researchers were then able to make home visits for interviews.

During the home visits, researchers explained the purpose of the study and asked women and their family members for their consent to participate. Women's family members were recruited to explore the family perspective of managing pregnancy complications and seeking healthcare. Those who lived in the same house as the women and participated in the referral decision-making processes were considered eligible for the study. Recruitment ceased when no new data were obtained from interviews (Hennink and Kaiser, 2022). A total of 12 pregnant women and 12 family members were recruited.

Data collection

Data were collected between October and November 2017 through semi-structured in-depth interviews, using an interview guide developed by the researchers. The guide was created using a literature review and consultation with an expert. It was pre-tested with fellow research members prior to data collection. Research assistants from Madura were involved with the interview process to facilitate communication and minimise bias.

The interviews were conducted in Bahasa or Madurese, both of which the researchers were fluent in. The interviews were audio recorded and data were transcribed verbatim by a member of the research team who was native Madurese. Interviews were conducted with participants at a time mutually agreeable to the researcher and the participant. For midwives, interviews were conducted in offices at the public health centres. For mothers and families, interviews were conducted at their homes. Each interview lasted 40–50 minutes.

Details of pregnancy complications were taken from women's pregnancy check-up book, which is provided by healthcare professionals and documents a woman's prenatal visits from the start of pregnancy to birth. For mothers and their families, the interviews included questions on:

• Demographic data
• History of the current pregnancy
• Pregnancy complications experienced
• History of antenatal care
• Health information obtained by the mother
• Experience of responding to referrals as a result of pregnancy complications.

The interview questions for midwives included demographic data, education, years of service as a midwife, and experiences working with pregnant women who required referral for pregnancy complications.

Data analysis

Data were analysed using thematic analysis based on the model by Miles et al (2014). Analysis was conducted in two stages. The first stage was data reduction, in which the data were summarised and important issues were identified. The researchers searched for patterns in identified issues to provide a clearer picture. The second stage involved data display, where the data were presented in narrative form and relationships between topics or themes were charted. The data were verified and conclusions were drawn in the final stage. All researchers involved in data analysis started with coding, theme development, data interpretation, and validation.

Trustworthiness

Trustworthiness enhanced the credibility, transferability, dependability and confirmability of the study's findings (Gunawan, 2015). This study used triangulation by involving different participants, including mothers, families and midwives, to provide a comprehensive understanding of experiences seeking healthcare for women with pregnancy complications. All research members took part in the in-depth interviews and made verbatim transcripts. To establish dependability, the researcher created an interview guide and conducted the equalisation of perceptions procedure through researcher capacity building before data collection. The process of data analysis and theme identification was conducted through a discussion forum with all researchers to enhance confirmability (Stahl and King, 2020).

Ethical considerations

This study received ethical approval from the Health Research Ethics Committee at the Faculty of Nursing, Universitas Airlangga (reference number: 511-KEPK). All participants received a verbal explanation before the study and provided written informed consent.

Results

Table 1 shows the sociodemographic data for pregnant women. All these participants were aged 21–33 years old. Five (41.7%) had not completed the 12-year compulsory education programme, and three (25.0%) received a higher education qualification. The majority were housewives (75.0%), with only three working mothers (25.0%), all of whom were teachers. Pregnancy complications experienced included cephalo pelvic disproportion, breech presentation and having had a previous caesarean section.

Table 2 outlines the sociodemographic data for family members, which included pregnant women's husbands, mothers, mothers-in-law and siblings. Their education levels varied from no formal education (16.7%) to completion of senior high school (25.0%), and occupations included housewife, farmer and civil servant.

Table 3 contains the demographic data of midwife participants'. Their work experience ranged from 11 to 27 years, with all having a diploma-level midwifery qualification (D1–D4, corresponding to 1–4 years of midwifery education).

Analysis of the interviews revealed three themes, each with two subthemes, that encompassed the decision-making experiences of Madurese families in seeking healthcare for women with pregnancy complications. The first theme was women empowerment issues, with the subthemes lack of knowledge and the decision maker. The second theme was cultural factors that affected family health-seeking behaviour, with the subthemes blessings of religious leaders and alternative treatment before medical treatment. The final theme was important considerations in seeking healthcare, with the subthemes health status of the pregnant woman and facilities and infrastructure of the health facilities.

Women empowerment issues

Women reportedly could not determine their own health-seeking behaviour. The participants discussed their lack of knowledge regarding the condition of their pregnancy, leading to a tendency to delay seeking healthcare, sometimes on the advice of others.

‘At that time after Fajr [prayer], I suddenly leaked fluid. Then my mother-in-law said “wait”. I was afraid, but I waited until 8am’.

Pregnant woman 5

‘I was told to go to the doctor for an ultrasound, but I didn't want to. In my mind, the doctor would say something was wrong with my pregnancy, and I had to have surgery’.

Pregnant woman 6

‘Yes, I was scared and nervous because I thought she would undoubtedly need surgery if she was referred to the hospital. As it happened, the doctor advised against having surgery as it was her first labour. Thank God, she finally had a normal birth’.

Family member 2

Parents, particularly fathers, were considered important to the family's decision making. While husbands played a role in health-seeking decisions, the final decision frequently rested with the parents.

‘My parents played the most important role at that time, especially my father’.

Pregnant woman 10

‘Oh, it's her husband who plays the most role, I don't interfere much, basically I agree what's best for my child’.

Family member 2

‘Usually, the decision depends on the parents. Even though there is a husband, they should discuss with the parents to show respect’.

Midwife 2

Cultural factors affecting health-seeking behaviour

Cultural factors within the Madurese community were reported to influence health-seeking behaviour. Making decisions on behalf of family members was one of many generational cultural practices that the Madurese community continued to preserve. One example of these cultural obligations was the need to consult community leaders, particularly religious leaders (Kyai), when making significant family decisions, as a sign of respect. This included women and their families asking for a favor from the Kyai regarding health-seeking behaviour.

‘I went to Kyai too, looking for his blessing so that everything would be okay’.

Pregnant woman 6

However, the perceived need to seek a blessing before seeking care led to delays in referral, even in emergencies.

‘There was a pregnant woman having seizures. I ordered her family to take her to the hospital, but the family refused, instead they took her to a spiritual healer. She was given a potion, I don't know what it was, but the seizures kept happening. Only then they took the patient to the hospital. Fortunately the patient survived’.

Midwife 3

The participants reported that Madurese people generally prefer using alternative medicine to manage health problems.

‘After being told that my baby was breech, I immediately tried abdominal massage therapy by Shaman, but it didn't change’.

Pregnant woman 9

‘I had a patient with prolonged labour. The family did not want this patient to be referred, so they gave this patient a drink of “rumput fatimah” remedies. Of course, the potion had no effect, and then I explained that something bad could happen, only then did they agree’.

Midwife 9

Important considerations in seeking healthcare

There were two important considerations when making a decision to seek healthcare for women with pregnancy complications: the health status of pregnant women and health services facilities and infrastructure.

A woman's health status impacted decision making. Several participants highlighted that the decision to seek healthcare would be made as soon as possible if there were severe signs and symptoms.

‘It's a bit complicated. Even though we have been providing family counselling, they continued to discuss and delay the referral. However, if the case is an emergency, the family agrees to refer directly’.

Midwife 9

‘My daughter had leakage when she was 9 months pregnant. It was around 7pm. We told her that it's common for fluid to come out at 9 months of pregnancy. So, we let her sleep, she also looked fine and didn't feel sick. We went to the midwife the next morning’.

Family member 9

One reason why there was a delay to referral was if the woman appeared otherwise healthy. Families often wanted to confirm the woman's condition with other health workers or wished to try alternative treatments before a referral was made.

‘The patient went home first. So, after returning home, they didn't come back to me again, they played around with other midwives, making sure the condition had to be referred’.

Midwife 7

‘I went to the ultrasound up to three times, moved to check with another midwife too, and made sure the breech was correct. I've also tried a massage and asked Kyai to pray, but the result is still the same’.

Pregnant woman 4

Selecting a health service facility for referral was a crucial decision when choosing to seek healthcare. Most participants shared the opinion that it was best to select healthcare facilities with simple admissions procedures.

‘They find it uncomfortable when they are unable to visit their family members who are receiving medical attention in a hospital’.

Midwife 8

‘Despite having health assurances, I'm worried that it will take time to be referred to a government hospital’.

Pregnant woman 9

Discussion

Pregnancy is a significant event that, in the cultural context of Indonesia, often involves family members, from planning the pregnancy to birth. Midwives are required to refer pregnant women with complications who are classified as high risk to obstetric and gynecological specialists (Lestari et al, 2023). However, the referral recommendation is not always heeded by pregnant women and their families.

The person responsible for decision making is an important element of health-seeking behaviour. In the majority of families in Indonesia, men have priority as leaders, giving husbands or fathers the authority to make decisions on behalf of women (Astuti, 2008; Astari et al, 2009). In the present study, husbands and fathers were frequently responsible for the decision to seek healthcare for pregnancy complications. They were seen as responsible for helping the family meet its needs and providing protection.

Parents were also important for decision making, being seen in the Madurese community as figures that must be respected. There is a belief that a blessing from one's parents is equivalent to the blessing of God (Anwar et al, 2023). Other studies have also reported that when a woman is pregnant and requires serious treatment, parents often take a role in determining decisions (Listiowati et al, 2018). In Bangladesh, Shahabuddin et al (2017) reported that adolescent girls had little decision-making autonomy, and family played an important role in their use of skilled maternal health services.

The study participants reported that a lack of knowledge about pregnancy complications led to a delay in seeking healthcare. Some participants who experienced dangerous signs and symptoms, such as those indicative of premature rupture of membranes, pre-eclampsia or a narrow pelvis, did not immediately agree to be referred, because they did not understand or recognise the danger. Women's education and knowledge of pregnancy complications are major factors associated with maternal healthcare-seeking behaviour (Kifle et al, 2017). The majority of pregnant women and their family members in the present study had low to medium education. Only two pregnant women had a college education background. This may have been an important factor in the decision making process.

Cultural factors also influence decision making in the Madurese community, as it is a religious society whose religious leaders (Kyai) have a role in almost all social issues. Some of the study participants deferred to Kyai when it came to the decision to seek healthcare for pregnant women. A previous study similarly found that the Kyai was seen as a role model because of their high knowledge, especially religious knowledge (Romadhon, 2020). The attitude towards Kyai is based on Madurese proverbs, namely buppa, babu, guruh, ratoh (father, mother, teacher, leader). This describes the social hierarchy, first and foremost respecting fathers, then mothers, teachers (Kyai) and finally leaders (Romadhon, 2020).

The findings indicated that the participants often preferred using alternative treatments to medical services, suchas herbal remedies and abdominal massage. This is consistent with earlier studies in Madura, which emphasised the maternal care practices of consuming herbal treatments and having an abdominal massage by a shaman (Devy et al, 2019). Other reports also highlight beliefs such as the benefits of rumput fatimah, a herbal treatment claimed to be beneficial during the last trimester, also known as rose of Jericho or Anastatica hierochuntica L (Astutik et al, 2020). However, researchers have not been able to definitively determine whether rose of Jericho or other varieties contain sufficient levels of anti-inflammatory, anti-melanogenic, and gastroprotective activities to have therapeutic benefits (Zin et al, 2017). Similarly, there are reports of the belief that abdominal massage is preferable during the third trimester to ensure proper positioning of the fetus (Devy et al, 2019). In other Indonesian areas, particularly East Nusa Tenggara, it is believed that abdominal massage helps strengthen the uterine muscles before birth, hastens lowering of the fetal head and makes the fetus stronger (Banul and Halu, 2020). However, a previous study stated that women should not have their abdomens massaged when they are pregnant as this could rupture their uterus or placenta, potentially causing miscarriage or death (Mueller and Grunwald, 2021). The present study's findings in relation to these practices highlight that community beliefs and traditions are strong in this population. Health services should use a cultural approach when providing care for pregnant women.

There were two important considerations regarding referral of high-risk pregnant women: health status and the facilities at the referral service. Pregnant women and their families would agree to be referred if there were signs and symptoms that endangered the mother and fetus. This is known as illness behaviour, where a person will seek medical help if they consider the signs and symptoms of a disease to be serious and they interfere with daily activities (Rosmalia and Sriani, 2017). It has previously been reported that a woman's health status can influence health-seeking behaviour (Nabieva and Souares, 2019).

Regarding healthcare facilities, almost all participants wanted to be referred to a centre with straightforward administrative procedures and that allowed the family to accompany the treatment process, although this could incur extra costs. This is in contrast to previous studies, which found that those of higher socioeconomic status were more likely to choose good health facilities (Li et al, 2020). A study in Dodoma, Tanzania found similar results to the present study, highlighting that use of health services was affected by cultural practices and gender norms, communication between spouses and service waiting time (Kibesa et al, 2022).

The results of this study imply the need for women's empowerment programmes, to strengthen their knowledge and decision-making abilities regarding their health. Healthcare services that incorporate and respect tradition and culture need to be developed to meet the needs of the Madurese community.

Strengths and limitations

This study explored the perspectives of three different groups, providing a comprehensive understanding of the health-seeking behaviours of the Madurese community. However, there were several limitations to this study; first, it focused solely on the Madurese community, so the results may not be generalisable to communities outside Madura. The participants included family members who lived with the pregnant women. This dynamic may have affected the participants' answers. Future research could benefit from exploring men's perspectives of the decision-making process in seeking healthcare for pregnancy complications, as the majority of participants in this study were women.

Conclusions

Decision making when seeking healthcare is dominated by men in the Madurese community. Pregnant women largely do not determine their own actions when seeking healthcare. There is a lack of knowledge about danger signs during pregnancy, which can lead to delays in seeking care for pregnancy complications. The prevalence of cultural and religious beliefs, including the need to defer to one's parents or religious leaders, also impact decision making. Continuous health education to increase knowledge of high-risk pregnancies and appropriate healthcare requirements for pregnant women and their families would be beneficial. Involving religious leaders in programmes to enhance health-seeking behaviour may also be a useful approach.

Key points

• Delays to referral of pregnant women with complications to higher-level medical care is a major cause of maternal death.
• Women's ability to make their own decisions regarding their health and care continues to have a significant impact on access to healthcare.
• Madurese people have a strong attachment to tradition and culture, which has a significant impact on health-seeking behaviour.
• Healthcare professionals should incorporate culture-based care when carrying out health programmes in the community, to enhance engagement with services and prevent delays to health-seeking behaviours.

CPD reflective questions

• What factors are likely to impact the decision-making process for women with pregnancy complications in terms of when to seek healthcare?
• How might these factors differ in different communities and cultures?
• Does a woman's family play an important role in the decision to seek care among women you care for?
• Do other sociodemographic and cultural factors affect health-seeking behaviours among the women you care for?