The Neonatal Intensive Care Unit (NICU) can be a difficult environment for parents because it is noisy, hot and crowded; in addition, advanced medical equipment and complex medical language serve as barriers between parents and their newborns (Mizrak, 2015). According to the World Health Organization (WHO), out of ten countries with the highest preterm birth rate, Pakistan is in fourth rank (WHO, 2012). Parents, especially mothers whose newborns are in the NICU, can have psychological problems due to having a sick baby, the thought of losing their baby and failure to fulfill traditional parenting roles. In Pakistan, little emphasis has been given to mothers of NICU babies and maternal stress. The present study investigated the role of social support among mothers of pre-mature babies in the NICU. The sample was selected from Rawalpindi and Islamabad. The study was carried out in two stages, i.e. stage I and stage II. The interview protocol was generated at stage I and qualitative interviews were carried out at stage II. Thematic analysis was employed to analyze the themes from the interviews. Results revealed that emotional responses were directly dependent upon social and husband support. Whomsoever in-laws were reported as supportive, that indicated less stress and anxiety level on the part of mothers as reported in the sample. If in-laws are not supportive, psychological issues and anxiety arise in the mother, which in turn affects the mother and child's health. Mothers need psychosocial support during this period in order to ensure the mothers’ emotional balance and decrease negative emotions that can lead to poor health outcomes. This study is helpful for mental health professionals in understanding the importance of social support for mothers of premature babies in the NICU.
Keywords: Social support. Maternal stress, NICU mothers, premature babies.
Being blessed with a baby is the biggest gift of one’s life. The baby brings a lot of happiness and joy to the family. But not every parent is blessed with a healthy baby, and the mother and child have to go through a life-changing experience where the health of the mother and child may also be in danger. Parents go through ups and downs while the baby is in the Neonatal intensive care unit (NICU). Parents’ emotional state of well-being naturally declines over the first few months after the baby’s birth as they face such distressing variations. This distress has been referred to as intense and increased care of the baby, loss of sleep, loss of personal time, and perhaps the loss of a job (Miller & Sollie, 2000).
Prenatal and postnatal can be an occasion of happiness, cheerful expectations, tension, and complications. Pregnancy and delivery bring some physical difficulties and psychosocial differences, and parents face new challenges during this time (Smith et al., 2011). Stress has been identified as one of the prime factors after delivery. Increasing evidence has associated stress with multiple chronic diseases over the years. Stress affects not only the mother but also her baby. This is particularly true in studies investigating preterm births. Preterm birth is one of the leading causes of baby mortality and childhood diseases, mainly caused by premature rupture of the membrane (Cha & Masho, 2013).
Pregnancy outcomes can be influenced by many factors. One major factor is social support, which can reduce mental stress and improve mental health during pregnancy; stress, anxiety, or depression cause preterm birth. Post-birth experience has exclusive physical and psychological characteristics on mothers like weakness, disturbed sleeping because of the deteriorating health of the baby and the implementation of new practices such as breastfeeding (Elsenbruch et al., 2007).
WHO characterizes preterm birth as a birth that happens before 37 weeks of pregnancy. Immaturity was characterized based on birth weight lower than 1.500 grams and with a gestational age under 32 weeks, though, in recent years, the late gestational age has been considered as the primary marker of physical and neurological development of preterm babies (Sansavini & Faldella, 2013).
Neonatal Intensive Care Unit
NICUs are classified in a level classification from I to III, depending on the capacity to care for a particular society of newborn children. The level III NICU exhibits the physical condition, workers and hardware consistently accessible to consider modestly sick and a seriously sick newborn is significantly in high danger and with
complicated and significant wellness (Lockwood and Lemons, 2007). The level III neonatal intensive care unit provides care to infants born within the same hospital or shifted from the local hospital services to the more isolated neonatal care (Smithgall, 2010).
The neonatal intensive care unit gives care to babies conceived unwell, premature, or requiring observation after birth. NICU units are an extremely busy part of a hospital, with most working at the full limit with infants requiring serious nursing, therapeutic consideration, and mediation most days of the year (Abdel-Latif et al., 2013).
The Neonatal Intensive Care Unit (NICU) experience can cause vigorous ecological and emotional suffering. With over 480,000 premature babies conceived each year. An expanding literature recommends that postpartum depression and a few related psychosocial factors, for example, tension, social support, and stress related to the NICU condition, are fundamentally identified with both newborn child and parental results (Gillis et al., 2006). In addition, the infection of their child, the absence of knowledge in regard to treatment and medicinal activities, the absence of correspondence with wellbeing experts, not taking an interest in being taken care of by their newborn children, and the absence of social support can prompt stress (Davis et al., 2003).
Social support positively affects pregnant women and children, which in turn influences etiological processes related to fetal growth. As a result, pregnant women enjoy a healthier lifestyle and outcomes. Social support refers to every relationship that has an enduring and optimistic influence on a person's life. Social support network supports you to collect assets to increase control of emotional and distressing circumstances (Hobel et al., 2008).
A supportive partner can help to comfort uncertainties and tensions. Sharing a healthy lifestyle before, during and after pregnancy is significant. Social support networks help increase confidence, fearlessness, and thoughts of self-esteem, which in turn encourage and maintain psychological modification (Findler et al., 2007).
A family is a network of social associations, relations, and designs that happen among individuals of families. Normally, the family is connected emotionally, and the parent is the sensitive person for responsibility and analytical solving in the family. Thus, it might badly affect the family structure and the parent's capability for emotional adjustment and critical thinking (Gustafsson et al., 2015). Researchers discovered that spouses (i.e., husbands or wives) were an important source of help earlier and after the discharge of premature babies. Relatives commonly give social support. Nevertheless, its significance still is that family support seems to be the most accessible promptly after the birth of a preterm and decreases throughout the subsequent couple of months. Scientists concluded that perceived social support is dissimilar from received social support. Strong people will probably have more social support than non-strong people (Rowe & Jones, 2010).
Parents of Premature Babies in NICU
Parents of NICU newborn babies usually encounter elevated amounts of pressure and thoughts of powerlessness, which frequently indicate an absence of information about parenting, interaction and taking care of their neonates during the neonatal intensive care unit visit (Melnyk et al., 2001).
The distressing effect and dissatisfaction experienced by the mother and father establish a distressing background when a baby is admitted to the NICU. With the loss of the parenting role, the staff nurses look after newborn babies. These were a few recognized stressors for parents of babies admitted to the NICU (Heidari et al., 2013).
Parents of pre-term babies also have to leave their daily routine and spend several hours in the NICU, where they keep on experiencing the babies' weakness and mortality (Clottey & Dillard, 2013).
Prevalence of Preterm Birth in Pakistan
Pakistan has an expanding measurement with 748,100 Preterm births every year and the fourth most noteworthy number after India, China, and Nigeria. Pakistan stayed eighth on the planet, first among Asian nations enrolling preterm births. Pakistan had made it very slow.
Development in maternal and child well-being. According to global figures, Pakistan appeared with very deprived figures for preterm births and existence (Alam, 2012). Approximately 15–25 percent of pre-term births are because of fetal or maternal complexity during pregnancy. In over 184 nations, pre-term birth rates range from 5 to 18 percent of all infants born. The prevalence of pre-term birth is contradictorily extending from 11.4 to 22.8 percent in nearby populations; the prevalence of pre-term birth is likewise growing in developing nations at a disturbing level and is up to 12 percent among each newborn (UNICEF, 2016).
The Rationale of the Study
This research study aims to explore social support among parents of premature babies. Pakistan, a third-world country, has most of the population living in rural and far-flung areas where there are few resources for medical assistance, especially for mothers and premature babies. Luckily, some facilities are available in big cities and the country’s capital.
These facilities are equipped with the latest and well-equipped NICUs under the supervision of good doctors and paramedics. But, as described above, most of the hospitals don’t have such facilities. Some of the hospitals with these facilities are not well maintained, and the condition of this equipment is not very satisfactory. Two or more babies are put together in one incubator in such hospitals. Most of the hospitals in Pakistan lack specialized equipment and fully trained personnel for equipment handling and maintenance.
In recent decades, the progress of medical knowledge, particularly in the field of reproductive induction approaches and their laboratory process, is one reason for premature births. Cesarean deliveries, likewise, have increased the premature birth rate. It has been revealed that mothers with a neonatal in the NICU label this as an extremely stressful experience. The neonatal intensive care unit environment is quite terrible and threatening for
Mothers are constantly afraid of some unpleasant situations that might happen when their baby is admitted to the NICU.
The proposed study will also find how different social support levels affect NICU babies' parents. This study will be beneficial for mental health professionals in understanding the stressful experiences of mothers with premature babies in the neonatal intensive care unit, and through social skills and proper counselling, mothers can provide better ways to cope with these stressful situations.
The present study focused on the Research Question: What social support system is available to mothers of premature babies in NICU?
The present study is designed mainly to explore the role of social support among mothers of premature babies in the NICU.
The present study has explored the experiences of mothers of premature babies by using qualitative research methods. The interview method was selected as it has characteristics of discussion.
A sample of 15 respondents was selected using a purposive sampling technique from different hospitals in Rawalpindi and Islamabad. Data will be collected through semi-structured interviews. The age range of the sample will be between 20 to 40 years.
Inclusion Criteria. For the present study, mothers of first-born babies and babies born less than 37 weeks are included in this research.
Exclusion Criteria. Mothers with no previous record /experience with NICU and mothers with no past history of mental disturbance are excluded.
Participants in this research are entirely voluntary. After a brief introduction, the researcher explained the objectives of the research. Confidentiality was assured. Verbal and written consent was taken from the participants before conducting the interview. The interview method was utilized. The interview provides access to the purpose and aim of the research, and the researcher has clear ideas about the type of research question being asked. Each interview lasted for approximately one to two and a half hours.
The interview sessions were audio recorded, transcribed, and analyzed; the researcher used thematic analysis, a qualitative method, to identify and report the themes extricated from the data. A coding framework was followed for the analysis, and the themes were organized as common themes, main themes, sub-themes and data were refined until the similarities and contradictions were fully explained (Auerbach & Silverstein, 2003).
Discussions and in-depth interviews included some illustrations of the conversations between participants rather than simply presenting isolated quotations from the context. The themes were extracted in detail with references to international research. Themes are patterns across data sets that are vital to explaining a fact and are related to particular research questions. The themes turn into categories for analysis (Jennifer & Cochrane, 2006).
Demographically, six mothers of premature babies with a mean age of 25 - 60 years; two of the mothers had attained 12 years of education, two had 14 years of education, and two had 16 years of education, respectively, were selected for the present study. The socioeconomic status of mothers revealed that five of the sample belonged to the middle class, and one was identified as lower class. Two mothers were from the nuclear family system, and four were from the joint family system.
Furthermore, the sample consisted of three mothers with baby boys, two mothers with baby girls and one with twins. In the study, the average length of a baby who stayed in the incubator was 30 days.
Table 1. Social Support & Mental Pressure of Mother
Themes and categories are briefly explained below:
The results of perinatal outcomes (including birth weight) during pregnancy can be correlated with the partner's social support and support or involvement (Elsenbruch et al., 2007).
One of the significant verbatim is:
“By the grace of Almighty Allah, I do not have any kind of mental pressure. Whenever I wanted to see my child, I just communicated this to my husband. He will take me to NICU so I may see my child and offer reassurance too” (Mother 2).
A lot of emotional distress, anxiety, and depression experienced by women can be reduced if support is shown by the husband, which also improves a woman’s mental health (Hobel et al., 2012).
Lack of Emotional Support
Not Supportive in-laws
The birth of a premature baby surely adds more financial and emotional stress to the family. Lack of social support from the husband of the family negatively impacts a mother’s ability to cope and handle such difficult circumstances (Table 1, Social Support & Mental Pressure of Mother).
Studies show that women are emotionally strong after childbirth and avoid emotional reactions if they receive or are expected to receive social support. Women expect that their friends, family, and particularly their husband can understand their conditions after childbirth.
Mother expressed her experience in the following verbatim:
“Behavior of my in-laws was quite” (Mother 1).
Another mother said:
“Yes, my mother-in-law used to taunt me after the birth of the baby girl. She used to say you were impregnated with a girl, so what is so special about it? I was given child after four years at least I was happy, and my husband was happy too, but my mother-in-law used to pressurize me” (Mother 5).
Poor health care for these mothers may result from a lack of understanding. It is thus interesting to know how stress and lack of social support affect health. Mothers who received less social support from their husbands and in-laws admitted that the stress in the relations provoked their stress levels.
As time passes, a lot of advancement is coming in every field of science and technology, specifically in the field of reproductive induction methods. The number of premature births is increasing due to more and more cesarean delivery procedures, and thus, the number of mothers who experience this procedure has increased. Most of mothers complain about this procedure. They reported that they were not in good physical condition after the procedure and felt very tired. In addition, for a few days, they were also unable to take care of their babies (Beck et al., 2010).
The mothers who participated in this study belong to different age groups. Some mothers were in their twenties when they had their babies, and others were in their thirties when they were blessed with babies. Interview responses vary due to this age difference. An interview containing fifteen questions was prepared, and all these mothers were interviewed. Social Support is divided into spouse and family support, the relationship of the couple after the birth of the baby and the mental pressure on the mother. Resilience is divided into hope, patience and coping strategies.
It was observed that mothers who got support from their spouse were a bit relaxed but still were afraid of other societal impacting factors like in-laws. Zachariah (2009), found that the primary resource for preterm infant mothers is family members. In addition, preterm infants reported that their spouse is the most helpful and useful resource.
The mothers who not only had their spouse’s support but also had the support of their family and friends were more relaxed and focused, and we were learning from their training to handle their babies in NICU.
Some of these mothers were observed to be psychologically stronger than the mothers, and these mothers responded that they had family support and did not have any guilt for giving birth to a premature baby.
During NICU hospitalization, pre-mature babies’ mothers’ who received social support from society anticipated positive relief, which helps to release the mother’s stress (Amankra et al., 2011).
When it comes to giving birth, it doesn’t really matter if the baby is born premature or normal, but what matters the most is the first interaction between the baby and the mother. Most of the mothers were still not able to express their feelings.
It has been observed that the mothers who had pre-mature babies were relieved but scared at the same time. They are the ones who seek out family support and doctoral guidance. They usually blame themselves if they are not getting enough support from their family.
These mothers seek out the help of their partners and families. Some of them get the support they look for, some of them get the support of their partners but not the in-laws and some of the mothers have to face the very criticism of the family. All these factors start affecting the health of the mothers, and they start to hold themselves responsible for the pre-mature birth of their baby. This leads to health issues, and these mothers face social, psychological and sleep disorders. Their fear continues to grow, and they start blaming the doctors and nurses in the NICU.
There are multiple psychological reactions following a premature baby’s birth. Most of the mothers empathize. Some of them criticize themselves. There was no sleep disorder for mothers with all the support and care. However, sleep disorder was reported for mothers where support was not provided either by spouse or family. Now, sleep is directly related to the mother’s mental health, and if sleep is disturbed, the mother won’t be able to take good care of herself or the baby.
Premature babies seek a lot of attention, and this is why the NICU is the only suitable place for them. Mothers of these babies have to go through many problems that directly and indirectly affect their health, leading to major sleeping disorders. Interviews conducted during this research helped in the identification of emotional triggers that majorly lead to sleep disturbance. The emotional triggers are maternal stress, negative feelings, social support, and resilience. These triggers are divided into themes, which are (labour experience, emotional experience, hospital experience, psychological distress, social support, marital behaviour, and personality change). Results from this study can help the caretaking teams in NICU to understand the experience of mothers better and help them with coping strategies and techniques for infant birth management. A mother must convey her feelings to get better support to manage and look after the child while ensuring she is physically and psychologically healthy by sleeping comfortably. During the study, some mothers reported that they didn’t have sleep disturbance as they faced the situation (premature birth of the baby) with the support of NICU staff, which helped them to understand the situation, which led to no sleep disturbance.
Limitations and Suggestions
The limitation of the study, among many two, is the major limitation of this research. The first one is that the fathers of these babies were not included in the interview sessions, and the second one is that the interviews were only conducted with the mothers residing in Rawalpindi and Islamabad selected for data collection. The NICU environment is very sensitive, and most mothers don’t agree to interviews; they are not able to give interviews at once and have not fully recovered from that trauma. The participants are mostly from the middle class, and the study did not cater to the upper middle class.
It is proposed that further studies on the physical and psychological health of the mothers must be carried out on a much wider and larger scale and include mothers who have normal deliveries but still have their babies shifted to NICU for some time.
This study will be helpful for mental health professionals in understanding the stressful experiences of mothers of premature babies in NICU, providing ways to cope with these stressful events in life.
NICU can be stressful for the mother, and a preterm baby's hospitalization subsequently affects her psychological well-being. The effective use of coping strategies, support from spouses, and support from doctors and nurses will reduce the level of maternal stress.
This study will help mothers separate from their pre-mature babies and give them more patience and stress their experience in hospital settings. And this study will help to enlighten and guide training in motherhood and NICU facilities. This study’s worth of social support confirms the benefits of caring and supportive involvement in reducing the possible psychological and emotional responses.
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About the Author
Foundation University School of Science and Technology (FUSST), Islamabad.