The findings which are the result of statements by 37 participants in the study on the needs and challenges of near-miss mothers consists of one major theme, "the need for comprehensive support". Eight categories emerged from analyzing the collected data of perceptions of key informants i.e., mothers, their husbands or other caregivers about the needs and challenges women with NMM experience. These categories included "psychological", "fertility", "information", "improvement of the care quality care", "sociocultural", "financial", "breastfeeding" and "nutritional" needs. These categories, in turn, emerged from 18 sub-categories, which in turn, were formed from 2112 codes. In the same vein, the codes were formed from the condensed meaning units and meaning units.
Psychological needs
The psychological needs found in this study emerged from sub-categories of "the need for psychological support for mothers" and "the need for psychological support for family members". All participants in the study said that since mothers undergo a life-threatening condition and, as a result, suffer from organ failure, they need psychological support from the very moment the incident begins. This support should continue throughout the hospital stay and after discharge. Therefore, upon discharge, they need to be screened for three common psychological consequences, including depression, anxiety, and post-traumatic stress, and if necessary, psychological counseling should be provided for the mother. At this point, psychological counseling should be provided depending on the mother's condition to help them relieve psychological stress. The participants noted that it is helpful to pay heeds to matters such as facilitating husband’s and family members’ visit in the intensive care unit. Most of the participants believed that, due to the negative psychological effects, after discharge, the mother does not have enough energy to go to the health care center to receive postpartum care, and hence it is necessary to check and evaluate her psychological symptoms at home, and to provide counseling services to her if required.
"Just as our midwife in the postpartum care examines the mother for blood pressure, bleeding, pulse, and uterine condition, there should be a standard psychological instrument to screen the mother psychologically" (P20).
"These mothers have experienced events that were unimaginable and unpredictable, so they need psychological support to accept and cope with their organ failure." (P19)
Most of the participants stated that another psychological need of these mothers is the psychological support for their husband and other children of the family. It is necessary to assess the husband, as a person who is emotionally dependent on the mother, for the level of stress and anxiety, and his mental worries need to be alleviated so that he becomes ready to accept the complication, and cooperates more with the service providers. The participants said that in times of crisis, the husband must remain calm, and sometimes, following the new circumstances created for the mother, it is necessary to resolve the husband's mental conflicts.
"These mothers are young of age and often are newly married, and with the problem that has arisen for the mother, there will certainly be severe emotional impacts on the husband because the wife's lifelong illness means that all his wishes and goals of life are ruined. Therefore, her husband must be mentally prepared to accept this ordeal and be able to help the mother in the medical care” (P 16).
The experience of the participants shows that the mother's previous children have endured very difficult conditions. Their mother has referred to the hospital for childbirth and sometimes has been hospitalized in the intensive care unit for two months. A mother's absence from home is deeply detrimental for a child. Therefore, the participants in the study believe, to prevent emotional harm, the previous children of the family need to be psychologically examined and counseled.
"My first daughter is seven years old. She was psychologically touched in the one month her mother was not at home, a deep touch. For example, she became very aggressive, was fighting, and didn't go to school. She always kept asking, ‘where is mommy?’, ‘where is mommy?'. Finally, I took her to a counselor, and she got better, a bit" (P 26).
Fertility Needs
In this study, fertility needs emerged from three subcategories of "Acceptance of fertility status", "Fertility counseling in high-risk pregnancies" and "Future fertility counseling". According to the participants in the study, it is necessary to pay attention to the support given after the fertility loss. For example, acceptance of infertility or acceptance of the number and sex of children in hysterectomies mothers, or supporting the family for counseling and adoption is necessary.
"A lot of marital worries and conflicts are grounded in couples’ inability to have another child or the impossibility to have a child of the desired gender, so one of the service providers should talk to the couple before they have a serious problem and analyze their concerns " (P 22).
Participants' experiences also indicated that in high-risk pregnancies, to prioritize maternal life, it is necessary to make policies in the field of women's health to reduce maternal mortality. Therefore, procedures such as a legal abortion or a legal tuba ligation or termination of pregnancy should be performed in time for a mother who is going through a high-risk pregnancy.
"Why, in your opinion, shouldn’t a mother with third-degree heart disease and aortic stenosis be allowed to end the pregnancy? Well, the result is a near miss mother who refers to the hospital for an emergency delivery" (P 14).
Participants also said that near-miss mothers, most of whom are high-risk mothers, should receive fertility counseling for future planned pregnancies before they decide to become pregnant.
"A mother who referred for delivery with Cushing's syndrome had an unplanned pregnancy the next year. Well, she should have received fertility counseling in the previous pregnancy and before discharge, so that she would not have referred back as an emergency case" (P 19).
Information Needs
In this study, information needs emerged from three sub-categories of "informing about the current problem", "fulfilling the family's information needs to support the mother" and "marital education". According to the participants in this study, it is necessary to give these mothers the necessary information about their current problem, so that the mother is not unaware of what has happened to her and of the treatment processes. They said that the required information, depending on the type of near-miss complication, can be provided through an information support package, writing important points for the mother by the discharge nurse, self-care education for mothers, giving information about the required readiness to face new postpartum conditions, and providing information to dispel mother's false beliefs and misconceptions.
"Someone in the hospital should exactly check that, given the type of organ failure, the mother has received all the necessary information about the problem. For example, our discharge nurse, as she was checking the mother for other physical cases one by one and ticked the checklist, rechecked that the mother had the necessary information." (p. 21).
The participants said that it is necessary to provide the family caregivers and family members with information about the necessity of giving positive support to the mother, not blaming her nor imposing the duties of life on her, accepting her with organ failure conditions, and taking care of her. If the family and the caregivers are not well-informed, they will not act in line with goals and plans.
"I have always said, and I still say, that family is one dimension of the therapy processes. If they are not informed, we cannot have effective maternal care" (P 8).
Participants said that due to the change in the living conditions of mothers and the need to start a lifestyle different from before, mothers need to receive some education. This information should be provided after discharge and for the purpose of marital education and sexual counseling. The husband should also be aware to behave as before in establishing emotional and empathetic connections and in paying romantic attention. Along these lines, during the healthcare, it is necessary to provide the couple with the required sexual counseling depending on the type of organ failure or to do the sexual screening through standard tools in the post-discharge phase.
"When a mother thinks that she is not like before and has organ failure, she thinks that she does not have the previous acceptance from her husband's point of view. So here both the mother and the husband should be informed about how the mother should feel qualified again, how she should not feel inferior" (P. 6).
The need to improve the quality of care
Experience of the participants shows that one more need that should be specifically considered for the care of near-miss mothers is the need to improve the quality of care, which consists of three sub-categories of “staff training”, “issuing specific guidelines for NMMs” and “removal of systemic barriers”. The experience of the participants in this study suggests that since near-miss mothers need more specialized and higher quality care, the staff must be specially trained in clinical and emergency skills, in providing special care for near-miss mothers, and in the early and timely diagnosis of morbidities.
"Our midwife, as well as our specialist, needs to know that the physical and mental care she provides for a near-miss mother is totally different from the one provided for a normal mother. Our midwife even doesn't know how to talk to such a mother and how to calm her down."(p.5)
Moreover, the participants stated that the behavioral and moral promotion of the staff should be done through empathetic behavior and proper communication which is in accordance with the spirit of near-miss mothers, and through understanding the differences in the living conditions of such mothers and their need for respect and ethical attention in the most critical living conditions of a mother. This promotion will not happen unless the Ministry of Health issues specific guidelines for near-miss mothers.
"These things must always be ordered from above. My colleague or I, if we are doing the right thing, it is because of our conscience, but no one has sent instructions that everyone adheres to" (p.13)
Participants argued that staff training should be based on promoting legal accountability for the avoidable maternal events and profound analysis of the cases of near-miss mothers so that people could be held accountable to justice for the mistakes and negligence of the health services, and mothers should also be aware of their rights.
"Our mother is not aware of her rights. She doesn't know what mistakes have put her in this turmoil. We have to look at the files one by one and figure out the shortcomings of our system. How can we overcome them if we don't recognize them?" (P11)
Socio-cultural needs
The results of this study led to the emergence of two sub-categories of "social needs" and "cultural needs", which formed the category of socio-cultural needs. Social needs refer to attempts to dispel social misconceptions about near-miss mothers and reduce the socio-psychological burden of society. All participants stated that social concerns, followed by social isolation, should be assessed by mental health experts. Mothers need to be screened for social harms leading to social isolation, and they should be referred to peer groups and related associations.
"Our mother needs to know that she is not alone. This problem has not happened just to her. So, we have to hold her hand and lift her up and introduce her to peer groups" (p 20).
Participants stated that cultural needs were related to cultural support through counseling families for cultural acceptance and attention to post-complication problems which are due to misconceptions. It is necessary to counsel and inform the mothers' families to remove the obstacles to their health.
"My mother-in-law said that a woman who does not have a womb is handicapped. There was no one to tell her not to have such a view. How long should these words be in our society?"(p.31)
Financial Needs
Analysis of the statements of the participants led to the emergence of two subcategories of "financial policies" and "facilitating low-cost services" for the category of financial needs. Fulfilling the financial needs that will lead to the support of these mothers through policy-making can be done through insurance coverage, covering them in certain diseases, freeing up medical services and their long follow-ups, granting loans, and allocating a monthly budget for their medical and nutritional support.
"I lost all my assets because of this problem. I didn't even have the money to bring my wife back to see the doctor. We're not saying they should give us non-repayable grants. I wish there had been somewhere at least to give us a loan" (P 25).
In addition, the provision of low-cost services to fulfill the needs of these mothers should be facilitated by referring them to aiding agencies, charities, and special public clinics. It is also important to identify and differentiate mothers with poor economic and social status. Moreover, if the services and care of these mothers are provided at the primary care level, the cost of treatment will be greatly reduced.
"At the time of discharge, we should give these mothers an appointment for a free visit to their specialist in the special clinic so that the mother knows that she has a free of charge appointment, and refers back to the clinic” (P 24).
Breastfeeding Needs
Breastfeeding needs in these mothers consisted of two sub-sectors, "facilitating mother-infant bonding" and "infant feeding". Participants in the study said the physical illness of these mothers should not make it difficult for them to contact their babies as quickly as possible. Service providers should seize every opportunity for the mother to see the baby at the ICU and, by removing barriers and providing amenities, they lead to the mother's attachment to the newborn. In cases where a physician advises stopping breastfeeding, to respect the sense of motherhood, mothers should be counseled to accept the discontinuation of breastfeeding. Sometimes the mother's problem is such that the mother is conscious and able to breastfeed, but it is difficult for nurses to take responsibility for caring for both the baby and the mother, and it is necessary to remove the legal barriers.
"Sometimes the mother has a breastfeeding contraindication, but we tell the mother to pump her breast so that we can take the milk to the baby. This lets the mother know that her baby is safe and healthy, and she does not feel useless." (p. 17)
Another breastfeeding need is to feed the baby, and it should be attempted to make it easy for near-miss mothers to use a formula or use a breast milk bank. This can be done by going to the mother's door to monitor the baby's breastfeeding and nutrition status.
"Sometimes the mother is so ill. Her milk has stopped. The family is so busy with the mother that they don't have the patience for paperwork to get the formula. The health team should go to the mother's home and assess the baby's nutritional status" (P3).
Nutritional Needs
Based on the accounts of the participants in this study, since maternal nutrition plays an important role in the mother's recuperation and return to her normal state, the subcategory of "attention to the role of nutrition in the recovery process" was formed. This subcategory refers to the nutritional needs of mothers which begin from the time the mother is admitted to the hospital and continues into the post-discharge period over the next few years until the mother's nutritional supply returns to normal. Participants stated that sometimes supplements need to be used, which is often overlooked. Therefore, appropriate nutrition counseling by relevant experts is necessary. These needs should be met through nutritional care by a nutritionist at a health care center, and nutritional needs should be periodically assessed by visiting the mothers at home and controlling her nutritional status and the calories received in her daily diet.
"My mother in the ICU has gone from 90 kilos to 40 kilos, but the food given to her is like that of any other patient" (P 9).
The results of this study suggest that near-miss mothers suffer from cascading problems following the near-miss incident, which requires different needs from different areas of their lives. Sometimes attention to other dimensions is ignored by service providers, and only her physical recovery is a priority. It is hoped that the results of this study, by creating a deep understanding of the needs of these mothers, draw the attention of service providers to their comprehensive needs.