Care and disposal of the remains of stillborn babies from the parents’ perspective in Taiwan: A phenomenological study

Abstract


Abstract
Background Each year, 2.6 million of pregnancies end as stillbirth. Recent literature began to understand parents' traumatic experience in stillbirth and its profound impact on parents' mental health and psychosocial effect. But there is little understanding on the actual care and disposal of the stillborn baby, nor is there an agreement on how hospitals should care for the stillborn baby to mitigate parents' profound loss. The purpose of this study is to understand parents' perspective on hospital's care for their stillborn babies, hoping to make suggestions on how can hospitals improve their care to mitigate parents' grieves.

Methods
A descriptive phenomenological approach was adopted and twenty couples (40 individuals) who had to decide how to care for the remains of their stillborn babies participated in the study. The data were collected through in-depth interviews, which involved semi-structured and open-ended questions. The phenomenological methods of Giorgi were applied to analyze the data.

Results
Parents felt unprepared and lack of support when they had to handle their stillborn babies' remains. The research results revealed two major themes: 1) Handling stillborn babies remain ignorantly; 2) Pacifying the disturbed soul on both sides. Given stillbirth's profound implication for parents' identity and psychosocial role, hospitals need to be more sensitive and proactive to parents' cultural and religious needs when they care for stillborn baby and handle its body.

Conclusions
It was found in the study that re ection and identi cation were the emerging themes, which can enable healthcare professionals to understand parents' concerns in a meaningful way, as they deal with the remains of stillborn babies. Moreover, it is hoped that hospital administration and health care personnel should consider stillborn parents' concerns and incorporate their needs into nursing assessment and treatment practices.

Background
The World Health Organization (WHO) de nes stillbirth, as a baby born with no signs of life at or after 28 weeks of gestation. Unfortunately, stillbirth is not a rare occurrence. Each year, 2.6 million of pregnancies end as stillbirth [1].Yet, even in countries where access to healthcare is not a problem, stillbirths are still a suppressed experience, resulting in a lack of support for the families and an unclear standard of care for the stillborn [2]. In fact, in many cultures, stillbirth is considered a taboo and is seldom discussed [3,4].
The prevalence of stillbirth and its suppressed discussion implicates the caring practice for stillborn baby and its parents. In fact, "induced abortion," "abortion," and "termination of pregnancy" are often associated with "disgrace" and "secrecy" in Taiwan and most other societies. According to Taiwan's customs, a child who dies under the age of 12 is called a "dunner child", who duns the debt his or her parents owed, in a previous lives. No funeral or ritual is performed for such a child because it is believed that the practice of such rights will cause their soul to become a homeless ghost [5,6]. Due to this custom, the way in which the hospital disposes of the remains of stillborn, is different from that of adults. Few parents bring the remains of their baby home or buy a quality co n for the cremation. No public funeral is held for stillborn babies, either. In most cases, the hospital is authorized to handle their remains [6,7]. There is no standardized hospital care guideline on how to care for parents whose pregnancy ends with stillbirth terminate a pregnancy. Therefore, it is important to examine how hospitals care for the remains of a stillborn baby in different communities and cultures. Using the Husserlian phenomenological approach, this study seeks to understand Taiwanese parents', experience regarding hospitals' care and disposal of the remains of their stillborn babies based on their cultural and religious perspective, hoping to inform health care professional on how to care for stillborn babies and their bereaved parents more adequately in the future.

Methods
A phenomenological study was chosen to describe the meaning of parents' experiences while taking care of the remains of their stillborn babies. We applied a phenomenological design, as an "exploration into nature." Phenomenological approach aims to examine the universal nature of experience, interpret the essence and structure of it, in order to provide information about participants' lives and reveal the main structural meaning of the lived experience [8,9]. A phenomenological approach argues that human nature's ful llment is to become more fully aware of who we are" [10].Therefore, based on parents' the experience, facial expressions and usage of words, this study seeks to restore the meaning that parents attach to the care of the remains of their stillborn babies [11].

Recruitment and participants
We used purposive sampling to recruit participants from the Department of Gynecology and Obstetrics of a medical center, located in Taoyuan County. Participants who meet the following criteria were invited to join this study: 1) pregnant women age 20 years old or more (without any limit on multiple births); 2) married and whose spouse is also invited; 3) their child were diagnosed with fetal death and the couple accepted induction of labor for stillbirth; 4) participants must be able to communicate in Mandarin or Taiwanese. Based on the inclusion criteria, we interviewed twenty couples (40 individuals) in total.

Ethical considerations
The present study was approved by the Ethical Review Board of the medical center located in Northern Taiwan. Researchers clearly explained the purpose and process of the study to the couples who were included in the investigation. The participants were made aware that they are allowed to withdraw from the study at any point of time. Informed consent written was obtained from all the participants before beginning the research.

Data collection
Two days after enrollment, the researchers visited the patient ward to get acquainted with the postdelivery conditions of the participants, offer post-delivery nursing advice and make an appointment for the interview, to be conducted on the day before or on the day of discharge. To protect the privacy of the participants and ensure a comfortable and quiet environment for the interview, we allowed the couples to determine the time and location for the interview. The interview questions included: "What did you experience in the face of handling the remains of baby?", "What is your opinion regarding the problem and how did you feel about it?", "How did you cope with your feelings?", "What was in your mind when you experienced these problems?" and lastly, "Can you share anything speci c (feeling or experience) which you faced that time". The interviewer recorded the participant's responses and also took notes during the interviews. In addition, facial expressions, movements, tone, and other non-verbal expressions were also noted. The interview did not come to an end, until the participants expressed all aspects they wanted to talk about, regarding the delivery. Each interview lasted for 60 to 120 minutes. After completion of the interview, the researchers offered necessary nursing consultation and also answered the questions raised by the couples.

Data analysis
The analytical method of Giorgi [12] was applied in this study. The rst analytical task required to read the data for a general understanding of the situation. The author initially transcribed the voice records into scripts and then listened to the recordings, re-read the transcriptions and interview materials to get a better description of the phenomenon. The second analytical step was to determine the meaning units of the data, with the goal of identifying "units of meaning" from a "phenomenological psychological perspective" [12] Meaning units are de ned as changes or transitions in the situation of the participants that are psychologically sensitive. In this phase of the analysis, the researcher discovers relevant meaning units through the practice of uncovering the "content of discovery" versus the "content of veri cation" that is used in scienti c methods [12].
The formation of meaning is an abstract process, featuring the transition from category to sub-discipline and discipline. The life context and experience of the participants are described according to the intrinsic time series, to equip the researchers with an understanding of parents' experiences in the face of caring, of the remains of their stillborn babies.
The third analytical step is to transform participant's natural attitude and expressions into phenomenological and psychologically sensitive expressions [12,13]. In this step, the researcher "goes back to the beginning of the description that is now delineated into meaning units" [12]. The researcher then interrogates each meaning unit with the goal of identifying the "implication of the lifeworld description" [12]. To accomplish this step, the researcher "dwells with the data, changing it and varying it imaginatively, until one nds an expression that is suitable" [12]. This step continues until, "all of the meaning units have been transformed" [12]. The researchers then returns to the description of the meaning units, questioning each meaning unit and de ning the description to express participants' life experiences, until the meaning was appropriately expressed and the researchers had adequately conveyed the natural structure of the speci c experience. In this study, the analyzed data was synchronized with the results of collected data. After each interview, the data were streamlined, encoded and analyzed. The data collection continued until no new disciplines were detected in the data being analyzed.

Trustworthiness
The rigor of this study was controlled according to the four criteria proposed by Lincoln and Guba [14,15] namely, true value, ttingness, auditability, and neutrality. The data were collected by the rst author, who had worked in the eld of obstetrics, with a clinical experience of 15 years and was currently, a clinical instructor and had good relationship with the clinical nursing staff. For data collection, the researchers contacted parents after termination of their pregnancies and offered relevant advice on post-delivery nursing, to establish an interpersonal relationship based on mutual trust with the parents. Furthermore, the time and location of the interview was determined by the participants so that they would be able to express their experience in a comfortable and trustworthy environment and thus offer true and tting data. The author analyzed, discussed and reviewed the data, followed by reviewing the results which was done by six parents. After the review process, the participants shared that the results were consistent with what they had expressed and agreed that the results re ected their experiences regarding care taken for the remains of their stillborn babies. This review demonstrated that the results of this study have ful lled the objective auditability and neutrality of the data. The audiotapes, texts, analytic steps and research logs were all kept safely. The details about the study were recorded and maintained separately as it will serve as a source of examination and recognition to achieve neutrality and also act as a reference tool while conducting future research.

Demographic characteristics of the participants
The researchers interviewed 20 couples that experienced stillbirth from August 2016 to July 2018. Father's age ranged from 25 to 44 years, with an average of 34.1 years whereas mother's age ranged from 24 to 39 years, with an average of 33 years. Regarding educational background, all of the participants had a high school education or above. As for religious beliefs, ve fathers were Taoists (25%); ten were Buddhists, (50%); one was Christian (5%) and four did not have any religious belief (20%). With respect to religious beliefs, the distribution among mothers was as follows: ve were Taoists (25%), eleven were Buddhists (55%) one of them was Christian (5%) and the last three did not have any religious belief (15%). Of the 20 families included in the study, 17 had working parents while the remaining three had a working father and a mother that is a housewife. Regarding family style, 16 of them were nuclear family and the other four were extended families (the couples lived with father's family members). The pregnancies with a gestation period from 28 to 40 weeks were included in the study and all of the babies were singleton. Among the total 20 stillborn babies, thirteen were male and seven were female. In this study, it was also noticed that eleven couples had no other child at the time of stillbirth, seven parents had one child and the remaining two had two children at the time of stillbirth. As for the pregnancy, before and after the stillbirth, it was also revealed during the study that four participants had an abortion before the stillbirth. It was disclosed by the participants that none of them have experienced stillbirth previously.
Parents' experiences at such a di cult and hard time while taking care of the remains of their stillborn, revealed two major themes in the study: 1) Handling stillborn babies remains ignorantly; 2) Pacifying the disturbed soul on both sides. These two themes are interrelated in the conceptual understanding related to the phenomenon of stillborn remains, as seen from parents' perspective and are summarized in Table 1.

Handling stillborn babies remains ignorantly
Parents felt unprepared and lack of support when they had to handle their stillborn babies' remains. While encountering the event of the stillborn neonate delivery, some parents expressed that they felt unprepared and lack of support when they had to participate in handling their stillborn babies' remain and that some medical workers did not show enough respect for their babies' remain. The uncovered subthemes include the description of the following aspects -unprepared event: facing the remains of stillborn baby, objectifying the baby's existence by treating "it" as a waste for disposal, co ns that lacks proper respect: just put it into a paper box! And a deserted departure: it's not clothed.

Unprepared event: facing the remains of stillborn baby
All parents' regret that their babies have left this world without anything for companion, and they did not realized such need until the mother was hospitalized or the delivery was nished.
According to Mother C, "If I had been informed before, I would have come prepared with some burial object, such as a lotus ower. At least, we would not have let the baby go without anything. By doing so, we would have felt better." Father C said, "It was not until my wife was hospitalized that we saw the health education booklet that mentioned the "burial object" for the stillborn baby. Before the hospitalization, we had no idea about it and as a result, we went to the hospital without any burial object. I think the hospital staff should inform parents like us, regarding the burial object in advance. In our case, we were so unprepared that we had no idea, even from where to buy the burial object." 1.2 Objectifying the baby's existence by treating "it" as a waste for disposal Our study found that the nursing staffs were too apathetic when they handled the remains after they help delivered the stillborn babies. As the staffs were silence toward the parents, parents also felt did not give any verbal explanation, it displayed their disrespectful attitude towards the parents.
Mother D mentioned, "After the delivery, I noticed that the nurse casually wrapped the baby with a mat and took it away. I could feel that the baby was dead, but the way they treated the baby was too casual. I just hoped that they would treat it as a living baby that is worthy of basic respect." 1.3 Insincere co n: just put it into a paper box! The discussion during the interview indicated that the remains of a stillborn baby were not managed adequately in the hospital. The dead babies were randomly put in a paper box. The parents were lled with grief and sorrow upon seeing such practice in the hospital.
Mother H said, "The nurse just brought a box, something like a shoe box. She opened the box and put the baby in it. For me, the disposal was too casual and was done hastily. The sight of how disposal was conducted, increased my sorrow (sobbing)."

Abandoned departure: it's not clothed!
Our study showed that, all remains of the stillborn babies were placed in a box. Out of the 20 babies, 19 (95%) were naked and only one (5%) was covered with a piece of cloth. The sight of their babies being naked, gave the parents a feeling as if the babies were abandoned, which made them more reluctant to leave the baby.
According to Mother F, "Parents are always worried that their baby might get cold, so they cover them up with lots of clothes. Though, we could not offer too much, at least our baby should have been wrapped with a piece of cloth (choking). I felt reluctant to leave it like that, after seeing it without any clothes (sobbing)." Father F added that, "Nothing was used as a cover for the baby, in the delivery room. When the nurse brought the baby to show me, I saw that it was naked and it felt that it was abandoned after death (choking)."

Pacifying the disturbed soul on both sides
The rst time the parents meets their stillborn baby is also the last time they meet their baby. Facing the fact to deal with a baby's death is the hardest thing for any parent. Both the soul of the deceased baby and the sorrowing parents needs to be paci ed.
2.1 Body cleaning: A paci ed portrait in the last glance A peaceful and relieved face of stillborn baby would leave a soothing impression on the parents rather than engraving a scene of death in their minds.
According to Father P, "The sight of the stillborn baby would be kept in the minds of its parents. After the delivery was over, the nurses cleaned it. So when I saw the baby, it showed a relieved face as if it had fallen asleep. Instead of giving a dreadful sight, it gave me a sense of relief to see its peaceful face." Additionally, the parents would have been more relieved if the remains of their stillborn babies could have been disposed of according to their religious beliefs so that they could have left peacefully. According to the Taiwanese folk's rituals and customs, it is believed that if the soul of a stillborn baby is homeless and fails to enter reincarnation, it would turn into a specter. Therefore, it is important to the parents of a stillborn baby that a proper ceremony was conducted respecting their religious beliefs and faith, to help rest its soul.

Shunning con ict: not to violate the cultural taboos
If the parents could handle the remains of their stillborn babies according to their faith and religious customs, they would have felt calmer and more peaceful when they left. According to Buddhist doctrine, it is considered that the spirit of newly dead person stays around for a certain period before they ran out of breath; they are regarded as dead, only after their body becomes cold and the spirit leaves the body. It is believed that before the spirit leaves the body, the soul is in the stage of greatest bitterness. Hence, the parents would try their best to offer a bene cial ceremony so they can have a peaceful mind.
According to Father G, "I would just look at the dead baby rather than holding it in my arms. As according to Buddhist doctrine, it is believed that parents should not touch the body of the dead baby within the 8 hours, before the departure of the soul. Otherwise, it would feel pain and might fail to be reincarnated. By following the custom we would be content that the baby felt good and was not in pain."

Fear of Loneliness: give a convoy gift
Our study shows that in the face of a sudden death of their baby, parents always wanted to do something for the baby so as to express their regret and simultaneously ful ll their wishes which they had always imagined before the birth of the baby.
Mother K shared, "I bought many pieces of colorful paper and awaited your arrival. I wanted to teach you how to make paper toys when you grew up. However, I lost the chance to do so. Out of the fear that you may feel lonely in heaven, I made some paper toys for you last night. Actually, I wanted to leave a piece of paper with you so that you could make a paper toy all by yourself, but I thought that you were too young to make it, so I did it for you. I made a great number of paper toys and placed them around you, with the hope that they would bring you back to us." Mother G said, "We played Buddhist music for the baby so that it would lead you to Buddha. There, the baby would feel at ease and be reincarnated, rather than turning into a specter." Our study show that in the case of a stillborn baby, if parents practice Buddhism, the souls of the dead babies can be put at peace by sharing Buddhist doctrines or rituals with them, so that they would feel at ease and achieve reincarnation.

Ensuring reincarnation: settle down the baby's soul
According to one of the traditional Taiwanese customs, it is believed that stillborn baby should not have a formal funeral or any other sacri ces and offerings. In a way, the belief represents that the soul of the dead baby will not be reincarnated but rather become homeless. Therefore, "Lotus quilt" is used to cover the body of the deceased, to prevent their body from being disturbed because it is considered that at the time when the soul leaves the body, the enemies and foes in all your previous lives will seek revenge, in an attempt to bring pain and distress to the body and soul of the departed.
Father B shared, "I covered his body with lotus quilt, so that his body and soul would not be disturbed, his soul would successfully leave the body and reincarnate in the next life." When faced with the death of an infant, parents usually prefer to use religious symbols so that they enable the departed soul to have a successful reincarnation. Hence, it is assumed that covering the body with a lotus quilt will prevent the soul and body from being disturbed, allowing the soul to successfully leave the body and be reincarnated in the next life.

Discussion
According to the traditional Chinese customs, the dead are mourned through a public social ceremony. On the contrary, some Chinese believe that child death is a "bad death", hence no public funeral or ritual is organized for stillborn babies, their death is not discussed because it is considered a shameful thing, as the god did not blessed the family [6,7,16,17]. Parents who have never faced a stillborn baby before are totally lost on how to dispose of the remains, after the termination of the pregnancy due to lack of prior discussion and preparation. They have little knowledge or experience on how to deal with such events except, some cultural guidance passed on from their elders [18][19][20]. In this study, all the parents were not informed of what to prepare when they have to dispose the remain of their stillborn baby, until the mothers were hospitalized or the delivery was nished. Moreover, the parents noticed medical staff's disrespectful behavior regarding the disposal of the remains of the stillborn babies and were deeply sadden after seeing that their babies left naked and placed in a paper box. It is important to understand that, to the parents, the stillborn was a baby and it used to be a life. Although, a dead adult would be mourned in a ceremony or funeral, there is no such ceremony organized for a stillborn baby.
The con rmation following the care for the remains in the hospital is the rst as well as the last time for the parents to meet their stillborn babies [7]. Thus, adequate display of care for the remains is in a way a chance for the parents to show their responsibility towards their babies. The results of the study showed that if the remains were kept naked or treated with disrespect, the parents felt guilty about it [6]. In fact, the parents expected the medical staff to show respect to their babies, regardless of their death being either, before or after the delivery and they hoped that the nurses should treat the remains, as if the babies were still alive. The nurses are expected to gently clean the babies, cut the umbilical cord, dress the babies, and at least, wrap them with a towel. The parents would be most consoled when this type of care would be delivered [21][22][23][24]. This kind of care towards the baby as well as the parents will have a drastic and permanent in uence on the family as a whole. For this reason, it is signi cantly important for medical professionals to provide appropriate care at the right time [25].
To properly take care of the stillborn remains, is an essential duty of medical heath care professionals.
One of the basic tasks of the medical staff is to respect the culture and religious beliefs, valued by both individuals and their family members. In the Chinese community, the teachings of Confucius have guided and shaped the Chinese government and the way by which Chinese families have lived for over two thousand years. Worshipping ancestors became a very important part of Chinese life and it was believed that if respect was shown to elders and ancestors, they would receive their blessings. Many Chinese people have combined the teachings of gods and beliefs, from the three main religions of ancient China namely, Confucianism, Taoism, and Buddhism. Because of the wide variety of practices and beliefs, it is important to discuss individual's needs after the death of the stillbirth body with the family [26,27]. The Christian faith expresses itself through various denominations that have developed from differences in nationality, historical tradition, temperament, and belief.
The need to be spiritually prepared for death can be of great importance, often unspoken, to those who may no longer attend a formal worship in church. The chaplain's ministry should also extend its services to provide care to patient's relatives, particularly in times of obvious distress or sudden death, when the presence of the chaplain can bring comfort and support to the grieving family. It is very important in cases where unbaptized children are seriously ill or are near to death, that the parents are offered an opportunity to request Baptism for their child. The priest should always be contacted in such cases although, a layperson may also baptize with water in the name of the Trinity, in the absence of a priest. This applies to all Christians, but there are some free church members who do not sanction infant baptism, may wish their child to be named and blessed instead. It is felt that conducting a religious ceremony helps family members to avoid chaotic meeting, provides them calmness, helps them to quietly deal with their disappointment and peacefully heal from the trauma [27,28]. It was observed in our study that within the rst 8 hours after they departed, none of the parents touched the body of the dead baby. According to Buddhist doctrine, it is considered that a dead person should not be moved or touched, within the 8 hours following their death; otherwise, they would feel pain and fall into the abyss of evil. The livings share Buddhist classics with the dead person so that their soul and spirit are led home. If their bodies were touched, their spirit would get lost and fail to return home. Consequently, the soul would become a homeless one and would not be reincarnated [29]. Due to their strong religious beliefs, most Taiwanese would follow the societal, religious and folk traditions. Therefore, because of parental love, all parents would send off their stillborn babies with whatever they can offer and would prefer to organize all of the bene cial ceremonies for the dead, to help relieve their grief [30].
The prevailing customs of the parents' cultural environment also determines mourning proceedings. A recent study showed that for Japanese children, a funeral ceremony was organized whereas the stillborn babies were not entered in the family register. It was noticed that the mourning rituals were also determined by the relatives of the parents and according to their local customs [31]. Another study conducted in Java showed that all those who participated in the rituals and ceremonies, including for stillborn children, allowed family members to manage the grief process so that they eventually reach a state of emotional detachment [32]. Taiwanese folklore has many representations of stillbirth and in accordance with their cultural taboos, the parents were encouraged not to see, handle, name or baptize their stillborn child [33].
Because an infant death is considered unacceptable in society, parents bear the stigma and guilt associated with it and then shows indescribable "silence" rather than expressing their sadness [1,2]. According to traditional Chinese custom, different ceremonies are held to facilitate the transition at various life stages -birth, adulthood, marriage, and death [3]. The "stillborn" death of a baby in the perinatal period, however, is different from death occurring in other periods. According to Taiwanese culture and custom, children aged 12 or younger, who die is regarded as the early dead. Lot of taboos is associated with "early dead persons", such as, no funerals would be conducted, no sacri ces would be offered and the elder family members should avoid touching the remains of the dead. It is strongly believed that those who violate these taboos would cause the reluctant departure of the soul of the dead and the soul would stay at home, bringing the family misfortune. Moreover, the dead would fail to be reincarnated and would become a homeless specter [30,34]. In Taiwan, most people would follow the traditional religious customs and social taboos. Rituals like, worshipping the ancestors and having faith in spirits, are few customs which are accepted by the public [30,33,34]. Parents who choose not to look at their dead baby and touch their remains, helps them to handle their sorrow and guilt of losing the baby implicitly, with a reason which is acceptable to the public, as they followed the cultural taboos.
It is seen that in western countries, the strategies to alleviate sorrow include seeing, baptizing and naming the child in order to prevent pathological sorrow among parents [33,34]. We found that the disposal of the remains of dead babies varies from culture to culture. According to the Taiwanese custom, the taboos have a totally different meaning and function for parents, as compared to western culture. The Taiwanese parents in this study, for instance, followed the taboo and chose not to see their dead babies. They did it out of consideration for the child, to allow its reincarnation and prevent their family members from being harmed. Therefore, medical professionals need to respect the customs and taboos of the parents and more importantly, they need to pay attention to individual's faith and beliefs while practicing daily clinical care. Thus, clinical care should be combined with the culture and customs of families and discussion on the preparation for the care of the remains should be held with parents at an appropriate time and in an appropriate place, before such practices are implemented. Additionally, a private space should be offered to the parents where they can express their feelings, share their experience and have a quiet discussion. After relevant discussion is over, all of the decisions made by the parents should be respected and supported and individualized nursing care should be offered [28].

Limitations
This study had few limitations, as it employed a purposive sampling method and all samples were recruited from one medical center only. Further research needs to be conducted at different locations with a larger sample sizes. It will help us to better understand parents' perspectives regarding the care of their stillborn babies.

Conclusion
In this study, none of the parents had ever experienced caring for the remains of a stillborn baby before. During our discussion about their overall experience in this entire process, they combined the visual information and environment attached with experience and changed it into personal thought and understanding [29,33]. While taking care of the remains of a stillborn baby, medical staff should treat the dead babies as if they were alive and show respect and dignity to the stillborn babies. Parents also expect their cultural and religious customs to be taken into consideration. During this study, all the information conveyed regarding the care of the remains, was obtained by the parents and it was evident that their responses were enshrined in their cognitive memory [24,35,36]. We hope our ndings can assist medical workers to be sensitive to parents' perspective of their stillborn babies. Only by doing so, can medical professionals help mitigate parents' profound loss in stillbirth.

Declarations
Abbreviations Not applicable Ethics approval and consent to participate The present study was approved by the Ethics Review Board of the medical center located in Northern Taiwan. Researchers clearly explained the purpose and the process of the study to the participants. Any participant was allowed to withdraw from the study at any time. Informed consent written was obtained from all of the participants.

Consent for publication
Consent for the use of anonymous direct quotes in reports was obtained from all participants.

Availability of data and materials
Data analyses were performed with semi-structured interviews, which are not available to other researchers, due to ethics and con dentiality issues.