Explore the caregiving needs of mothers for late preterm neonates post discharge

Abstract

BACKGROUND:

Delivered between 34 and 36 weeks of gestation, late preterm neonates account for nearly 70% of all preterm births. While these neonates are often treated as if they were full term, they have different challenges and needs that pose significant caregiving challenges for their families. Therefore, this study aims to explore the needs of mothers in short-term care of late preterm neonates at home.

MATERIALS AND METHODS:

This qualitative content analysis study was conducted using the Graneheim and Lundman method from December 2022 to June 2023. In-depth semistructured interviews were conducted with a purposive sample of 18 mothers who had experience in caring for late preterm neonates. The number of sessions was one or two, and the duration of each interview varied from 30 to 60 minutes. Data were analyzed in MAXQDA 10.0 software.

RESULTS:

The analysis of the interviews led to the identification of 70 primary codes, which were further categorized into 13 subcategories, and finally, three categories emerged, including “Need for Further Information”, “Need to Enhance Caregiving Skills”, and “Support Needs of Mothers”.

CONCLUSION:

Providing sufficient information and training in neonate care plays a crucial role in meeting the needs of mothers. Additionally, comprehensive support for mothers can help reduce problems and maintain their physical and mental health. Clarifying the needs of mothers can contribute to the development of home care programs, empower mothers in their self-care aspect, and enhance the quality of home-based care.

Introduction

Late preterm neonates are newborns who are delivered between 34 0/7 and 36 6/7 weeks of pregnancy.[1] They account for about 70% of preterm births and 7% of all live births.[2] Missing out on the last 6 weeks of pregnancy can have significant effects on the physiological and metabolic development of these neonates. Compared to full-term neonates, they often have smaller brains and larger cerebrospinal fluid spaces, which can lead to certain disorders. However, late preterm neonates are often treated as if they were full term and are sometimes discharged from the hospital just 2 days after birth without a proper follow-up plan. As a result, they tend to experience more difficulties in areas such as breathing, feeding, hypoglycemia, temperature regulation, hyperbilirubinemia, hypocalcemia, apnea, and neurodevelopmental delays compared to full-term neonates. This also leads to a higher readmission rate and 4 times higher mortality rate than term neonates.[3,4,5] With the responsibility of care being transferred to the parents upon preterm discharge, it is crucial to improve their knowledge and empower them, particularly the mothers, by providing postdischarge services and support.[6] Parents of preterm neonates often face various negative mental and emotional consequences, including anxiety, depression, perceived stress, and post-traumatic stress disorder (PTSD). Stress usually takes place following the mother’s inability to interact and take care of the neonate appropriately and lack of her knowledge about the parenthood role. These consequences are typically more severe in mothers, who are the primary caregivers of the newborns. The mother’s physical and mental well-being can significantly impact the health of the neonate.[7,8,9]

According to the World Health Organization, more than 60% of preterm births occur in low- and middle-income countries in Africa and South Asia. These countries often have inaccurate and incomplete demographic data and medical records, and they face a wide range of challenges such as inconsistencies and inequalities in health care, incompetence of human resources, and lack of public awareness about preterm births. In addition, due to limited resources and insufficient social support systems, they are unable to identify and meet the health and developmental needs of families.[10] Meanwhile, the needs of the preterm neonates are the priority of the health care workers, and the mother and her role may be overshadowed and as a result, her needs are neglected.[11]

Consequently, it is crucial to develop support and educational programs tailored to the needs of both parents and neonates before transferring late preterm neonates from the hospital to their homes.[12] Educating parents empowers them, and it can create a sense of control and a realistic understanding of the neonate’s appearance and condition. This fosters enthusiasm for accepting and caring for the neonates and reduces negative behaviors toward them.[13] Research findings indicate that implementing a standardized educational program during discharge improves outcomes for both the mother and the neonate.[2] This program should be tailored to address the unique needs of both neonates and their families,[14] which is coordinate with the available resources and capabilities of caregivers.

Although there are limited studies on the care of preterm neonates after discharge and parental,[5,10] the research findings point to the importance of including parents’ perceptions, thoughts, and opinions in designing intervention strategies or developing care plans. This shows that there is a consensus at the international level to identify the special needs of parents of preterm neonates and implement fair and sustainable interventions. The level of information and needs of parents regarding the care of preterm babies after discharge needs more studies because these findings are helpful to identify common themes that directly relate to take care of neonates and to provide proper home care for preterm neonates after initial discharge.[10,15] Additionally, late preterm neonates have been relatively excluded from such studies, so there is a need to conduct more studies on the needs and experiences of mothers with late preterm neonates after discharge from the hospital.[16] Also, most of the existing studies focus on the immediate period and employ quantitative methods, neglecting the experiences and perspectives of parents caring for their late preterm neonates at home.[5] This lack of qualitative research, which delves deeper into parents’ own voices, hinders a comprehensive understanding of this topic. Therefore, to address this gap and gain a more nuanced perspective on mothers’ needs at home, this study was implemented with a qualitative approach. Qualitative studies, on the other hand, address individuals’ viewpoints and lived experiences, allowing for the exploration of contexts and concepts that may have been overlooked in quantitative research, while providing a more objective account of the facts.[17] The primary objective of qualitative research is to clarify events, norms, and values from the participants’ perspective,[18] leading to a profound and nuanced understanding of a specific phenomenon.[19] Among the various qualitative approaches, content analysis is a widely utilized systematic method in nursing research, serving as both a method and an approach for analyzing qualitative data.[20] This prevalent qualitative approach enables a comprehensive description of phenomena and lived experiences as well as a subjective interpretation of textual data.[21] The global prevalence of preterm birth, ranging from 5% to 18%, highlights a significant public health concern.[22] However, within Iran, this rate varies considerably, with cities like Qom reporting 5.6% and Kerman experiencing a much higher rate of 39.4%.[3] Given these substantial variations and the associated costs for healthcare systems, this study aims to explore the short-term care needs of mothers caring for late preterm neonates at home.

Material and Methods

This qualitative conventional content analysis was done using the Graneheim and Lundman method.

Study participants and setting

The participants in this study were mothers with experience in caring for late preterm neonates who were referred to the Golestan University of Medical Sciences hospitals for postdischarge care services and periodic evaluations of their neonates. A total of 18 eligible mothers were selected using purposive sampling, considering maximum variation in terms of age, education, occupation, number of children, type of delivery, and age and gender of the neonates. Sampling continued until data saturation was reached.

Data collection

After selecting the participants, the researcher introduced herself and provided information about the study’s purpose, data collection methods, and participation process. Verbal and written consent was obtained from the participants. The place and time of the interviews were arranged according to the participants’ preferences, ensuring their convenience and comfort. In addition, at the beginning of the interview, consent was again obtained regarding the recording of the interview process. Eighteen individual semistructured interviews were conducted face-to-face between March 2022 and June 2023 by the main researcher at either the clinic or the participants’ homes.

The number of sessions was one or two and the duration of each interview varied from 30 to 60 minutes, depending on the participants’ responses and willingness to participate. The interviews began with open-ended questions such as “Can you describe your experience of taking care of a neonate for a day?” and were guided by phrases such as “Please provide more details” or “Can you give an example?” Exploratory questions were also used during the interviews. Theoretical note-taking, observation, and methodological approaches were also used for data collection.

The interviews were immediately implemented after completion to allow for a review of the participants’ statements and the possibility of further consultation with them. As the study progressed and the interviews were analyzed, new questions were added or existing questions were revised based on the emerging categories and questions that arose in the researcher’s mind. To ensure a comprehensive understanding of the participants’ experiences, interviews continued until data saturation was achieved. This refers to the point at which no new significant themes or insights emerged from the data, even after conducting additional interviews. In this study, saturation was reached after 15 interviews, with three additional interviews conducted to confirm this point, and the data were analyzed based on the information obtained from the 18 participants. Data analysis was conducted simultaneously with data collection.

Data analysis

To analyze the data, the researcher utilized the conventional content analysis method proposed by Granheim and Lundman (2004).[23] After each interview, the audio file was listened to multiple times and transcribed verbatim. To immerse in the data, each text was read multiple times. The interview transcripts were then imported into the MAXQDA 10.0 software for data management. Open and initial coding was performed to summarize and condense the interview text. Primary codes were assigned based on the study’s objectives and the identification of mothers’ needs, and these codes were further organized into subcategories based on similarities and differences. Through repeated review of the subcategories and constant comparison of similarities and differences, they were categorized and grouped into categories, each with an appropriate title that encompassed the subcategories. Throughout the entire process, efforts were made to maintain high levels of homogeneity within the categories and heterogeneity between the categories, ensuring that similar codes were not placed in subcategories and similar subcategories were not placed in different categories.

Rigor and trustworthiness

To ensure the rigor and trustworthiness of the research, Lincoln and Guba’s criteria were employed, which included credibility, dependability, transferability, and confirmability.[24] To achieve credibility, the researcher immersed herself in the research topic and data, striving for a deep understanding of the details. The coding process was reviewed by supervisors, who confirmed the correctness of the codes and categories by examining the interviews and extracted codes. Additionally, the participants were provided with the written text of the interviews and the initially extracted codes, allowing them to provide feedback to confirm the correctness of the expressed content and the researcher’s understanding. The dependability was ensured by involving an external observer who reviewed samples of the text and codes, providing both affirmative and critical comments. The transferability was addressed by recording the research process, documenting decisions made, and providing a rich and in-depth description of the context, along with necessary explanations about the participants’ perceptions. The confirmability was established through the approval of professors and experts. Furthermore, the researcher maintained objectivity by refraining from injecting her views and opinions into the data analysis.

Ethical considerations

This study, which is a part of a nursing doctoral dissertation, was conducted with the approval of the Research Council of the Vice-Chancellor of Research and Technology and the Ethics Committee of Golestan University of Medical Sciences (code: IR.GOUMS.REC.1401.214). Written informed consent was obtained from all participants prior to the interviews, ensuring their voluntary participation and permission to record the interviews. Participants were assured of the confidentiality of their information, and the interview recordings were deleted after the results were obtained. They were also informed of their right to withdraw from the study at any time.

Result

The participants had an average age of 27 ± 00 years (range of 16). The majority of them, 11 (61%), had one child, 10 (55.6%) had a university education, and 11 (61.1%) were housewives [Table 1].

Table 1.

Demographic characteristics of participants in the study

Participant Code	Mother’s Age (years)	Neonate’s Age (days)	Number of Children	Neonate’s Gender	Type of Delivery	Employment Status	Education Level
P1	30	13	1	Boy	C/S1	Housewife	Master’s degree
P2	26	4	1	Girl	C/S	Employed	Bachelor’s degree
P3	32	8	2	Girl	C/S	Housewife	High school diploma
P4	19	10	1	Girl	C/S	Housewife	High school diploma
P5	35	7	2	Boy	NVD2	Employed	Bachelor’s degree
P6	21	9	1	Boy	C/S	Housewife	Bachelor’s degree
P7	24	15	2	Boy	C/S	Housewife	Middle School Diploma
P8	23	11	1	Girl	NVD	Employed	High school diploma
P9	29	15	3	Boy	C/S	Employed	Bachelor’s degree
P10	30	10	1	Girl	C/S	Housewife	Bachelor’s degree
P11	27	14	1	Boy	NVD	Employed	High school diploma
P12	27	20	2	Boy	C/S	Housewife	Bachelor’s degree
P13	20	13	1	Girl	C/S	Housewife	High school diploma
P14	35	16	3	Boy	NVD	Housewife	Middle School Diploma
P15	29	11	2	Girl	C/S	Housewife	High school diploma
P16	31	9	1	Boy	C/S	Housewife	Bachelor’s degree
P17	33	17	1	Boy	NVD	Employed	Bachelor’s degree
P18	35	8	1	Girl	NVD	Employed	Bachelor’s degree

1 Caesarean section. 2 Normal Vaginal Delivery

After analyzing the data, a total of 70 codes were identified and then 13 subcategories and three categories emerged. These categories include Need for Further Information, Need to Enhance Caregiving Skills, and Support Needs of Mothers.

Need for further information

The specific subcategories within the “need for further information” category are “general care of the neonate care, follow-up care, symptoms of the neonate’s illness, and managing environmental factors.” These findings are summarized in Table 2.

Table 2.

Sub-categories and categories and codes resulting from the analysis of data

Primary Codes	Sub-Categories	Categories
-nutrition -proper way to administer supplements -burping -sleep and rest -excretion -temperature control	1.General Care Of The Neonate	Need For Further Information
- when to visit the doctor - timing of screening tests - vaccinations -visits to the health center for monitoring growth and development indicators	2.Follow-Up Care
- changes in the neonate's skin color - regurgitation of milk into the respiratory tract - symptoms of seizures - oral thrush - lethargy and poor feeding - abnormal stretching and arching of the neonate's body - abnormal breathing -how to count the neonate's breaths	3.Symptoms Of The Neonate's Illness
-appropriate levels of light and sound in the neonate's surroundings - timing of sleep and wake-up -interaction with people nearby	4.Managing Environmental Factors
- breastfeeding -positioning the neonate correctly -preparing formula milk -feeding using a cup or bottle	1.Different Feeding Methods	Need To Enhance Caregiving Skills
-techniques for soothing the neonate -accepting the neonate's uniqueness compared to other neonates -struggling to understand the neonate's cues -recognizing different types of cries -finding joy in caring for the neonate -touching and hugging the neonate -learning how to communicate with the neonate through talking	2.Communication With The Neonate
- hygiene practices -bathing the neonate -caring for the umbilical cord	3.Following Health Guidelines And Preventing Infections
- positioning the neonate in different ways -ensuring the neonate's safety at home -using a car seat correctly - addressing any breathing issues caused by milk	4.Ensuring The Neonate's Safety
- fatigue and decreased energy levels - decreased sleep time - self neglect - delayed seeking postnatal healthcare	1.Maintaining The Mother's Physical Health	Support Needs of Mothers
- helplessness -loneliness -fear -anxiety - exhausting and overwhelming - feel guilty	2.Maintaining the Mother's Mental Health
- insufficient milk supply -impact of the mother's medication on the neonate -possibility of transmitting underlying diseases from the parents to the neonate -worries about the neonate's future - occurrence of seizures -cessation of breathing -suffocation -decrease in the oxygen level of the neonate's blood	3.Addressing Concerns
- inconsistent information provided by different sources -difficulty in accessing accurate information -lack of specialized information sources available at all times - challenge of obtaining reliable information from the Internet and virtual platforms	4.Access to Reliable Information Sources
- support from their husbands and family - lack of support from organizations and social institutions -need for financial assistance	5.Access to Support Groups

General care of the neonate

The mothers’ statements indicated their desire for information regarding various aspects of general neonate care, including “nutrition and the proper way to administer supplements, burping, sleep and rest, excretion, and temperature control”. One participant expressed, “I had no experience in caring for a neonate before. I don’t know how to feed my neonate and how to handle situations such as milk coming out of the neonate’s mouth or burping after feeding” (p4).

Another participant stated, “I am mostly concerned about my neonate’s sleep patterns and desire to regulate it. I have done extensive online research, seeking guidance on what to do if the neonate wakes up only once at night to feed and then go back to sleep, as it personally bothered me” (p12).

The majority of participants were unaware of the normal frequency of urination and stool movements in neonates, making it challenging for them to manage and adjust the neonate’s excretion. One participant stated, “I had read somewhere that monitoring diaper changes is essential to understanding the neonate’s digestive health. For instance, stool movements should occur 8 to 12 times, while urination should happen at least 6 times” (p11).

Follow-up care

The participants expressed concerns about the lack of accurate information regarding when to visit the doctor to monitor the neonate’s health after being discharged from the hospital. They also mentioned the uncertainty surrounding the timing of screening tests, vaccinations, and visits to the health center for monitoring growth and development indicators. They emphasized the need for more information on follow-up care.

One participant mentioned, “People around me advised me to take my neonate to the clinic for height and weight measurements. Then I noticed that the vaccination card had the specific day for vaccinations. I believe that every time I take my neonate for vaccinations, they should also check height, weight, and other things” (p2).

Another mother shared her experience, saying, “Two days after bringing my neonate home, I noticed that he had jaundice. I decided to take him for a check-up, where I found out about the jaundice. But it would have been better if the doctor had informed me during my hospital stay that I should bring my neonate for a check-up after a few days” (p7).

Symptoms of the neonate’s illness

Mothers expressed the need for information on recognizing symptoms of their neonates’ illness. They often worry about changes in the neonate’s skin color and regurgitation of milk into the respiratory tract. Some mothers were concerned about distinguishing between their neonate being full and having peaceful sleep, versus lethargy and poor feeding. One mother shared her confusion, saying, “Sometimes I get confused and don’t know if the milk I give him is enough. After breastfeeding, he sometimes licks his pacifier or hand. In the hospital, they told me to give him milk to prevent low blood sugar, which causes lethargy. Once I breastfed him, he slept for 4 hours without waking up. I was worried and took him to the hospital. It was good that they checked his blood sugar. They also checked my breastfeeding and advised me to stimulate his feet to wake him up before feeding. At first, I was very worried that he wouldn’t get sick, then I gradually realized how his feeding routine was and it got better for me.” (p15).

Mothers also mentioned concerns about identifying symptoms of seizures and differentiating them from neonate tremors, symptoms of oral thrush, abnormal stretching and arching of the neonate’s body, abnormal breathing, and how to count the neonate’s breaths. One mother expressed her worry about her neonate’s breathing, saying, “I was worried about my neonate’s breathing every moment. Because my neonate was preterm and was born early, the doctor told me that his lungs’ growth might not be complete. I was afraid that he would stop breathing or have problems or snore. Sometimes I would wake up at night, but as soon as I saw him moving in his sleep, I knew he was breathing and I felt relieved” (p9).

Managing environmental factors

Some mothers expressed a lack of knowledge regarding the appropriate levels of light and sound in the neonate’s surroundings, as well as the timing of sleep and wake-up, and interaction with people nearby. One mother mentioned, “I believe that having some noise in the environment is beneficial for neonates and helps them adapt faster. My brother’s neonate was comforted by the sound of a hairdryer when they were the same age. I am not sure about the ideal amount of light, so I should consult the doctor” (p4). Another mother stated, “I thought exposing my neonate to light would help with his jaundice, so I tried using a moonlight lamp to reduce it” (p11).

Need to enhance caregiving skills

The birth of a late preterm neonate is often a challenging and stressful experience for parents. They may not feel adequately prepared to care for these neonates, highlighting the need to improve their caregiving skills. This category includes subcategories such as different feeding methods, communication with the neonate, following health guidelines and preventing Infections, and ensuring the neonate’s safety.

Different feeding methods

This subcategory focuses on the need to enhance skills related to techniques such as breastfeeding, positioning the neonate correctly, preparing formula milk, and feeding using a cup or bottle, as indicated by the mothers’ statements. One mother shared her experience, saying, “Since my neonate was born preterm, I didn’t have enough breast milk. I started feeding them formula milk while also massaging my breasts. It has improved since my neonate started sucking. Initially, I didn’t know how to prepare formula milk properly. I was afraid of using a bottle, thinking that the milk might spill into his respiratory tract, so I had to pat his back to help him catch his breath” (p9).

Communication with the neonate

Based on the participants’ statements, many of them needed to acquire further information and skill acquisition regarding techniques for soothing the neonate, accepting the neonate’s uniqueness compared to other neonates, struggling to understand the neonate’s cues, recognizing different types of cries, finding joy in caring for the neonate, touching and hugging the neonate, and learning how to communicate with the neonate through talking.

One mother shared her experience, saying, “I was inexperienced, especially at night or when my neonate cried. I didn’t know how to calm him down. For example, I couldn’t know if he was crying because he needed a diaper change or because he was hungry. I couldn’t understand his needs. I would ask my sister-in-law or mother to help me interpret his cries” (p4). Another mother mentioned, “My neonate is underweight. I wanted to hug her, but I was afraid she would break or get hurt because she was so small. Even changing diapers was difficult for me in the beginning” (p8).

Following health guidelines and preventing infections

According to the findings, mothers expressed a need to improve their skills in following hygiene practices, bathing the neonate, and caring for the umbilical cord. One mother expressed her fear, saying, “I’m scared to bathe him. I don’t know how to do it properly. How often should I bathe him and at what time? I can’t do it alone. It’s always my mother or mother-in-law who does it. I’m scared I might harm him because he’s so small. They didn’t explain these things to me in the hospital. They focused more on breastfeeding” (p3). Another mother shared her experience, saying, “The hospital provided instructions to wash the umbilical cord with soap and water. Even though I followed that, on the third day, the area around the navel turned red and had some discharge. I had very little information. Some people suggested using betadine, while others recommended alcohol. I visited my doctor. She prescribed medication and it improved” (p1).

Ensuring the neonate’s safety

According to this subcategory, mothers were advised to enhance their caregiving skills in terms of positioning the neonate in different ways, ensuring the neonate’s safety at home, using a car seat correctly, and addressing any breathing issues caused by milk. Some participants shared their experiences:

“After breastfeeding, I make my neonate sleep on his side. Sometimes I lay him on his back so that his milk is digested faster. This is what they used to do in the hospital. I also place a soft sheet under his body to prevent any harm.” (p17)

“I bought a car seat for my neonate, but I haven’t used it yet. I’m afraid. When we travel by car, I place it somewhere in a carrier or wrap it in a blanket to make it feel safer.” (p6)

“If the milk jumps and interferes with my neonate’s breathing, I should not panic. I gently push his forehead upwards like they used to do in the past. In the hospital, they showed us a video about breastfeeding, but I couldn’t watch it because I was in pain. I don’t remember the details at all. Taking care of a neonate at home is very different from being in the hospital. Unexpected things can happen at home, while we weren’t informed about them in the hospital. This is my first time being a mother. My mother and mother-in-law had children 25-30 years ago. They used to do things differently, and they have forgotten many things.” (p11)

Support needs of mothers

This category was formed by combining the subcategories of maintaining the mother’s physical health, maintaining the mother’s mental health, addressing concerns, access to reliable information sources, and access to support groups.

Maintaining the mother’s physical health

Almost all the mothers mentioned that they have not had a full night’s sleep since giving birth and taking constant care of the neonate has made them tired and drained their energy levels. They also admitted that despite needing more rest after childbirth due to their physical condition, they neglected themselves because of the neonate’s special needs and delayed seeking postnatal healthcare.

One mother expressed her exhaustion, saying, “I’m really tired. I wish I could sleep for a whole day. I was awake the entire time in the hospital. My neonate had high jaundice, so I had to breastfeed him every two hours. It was so crowded there; that I couldn’t sleep at all. During the four or five days I spent in the hospital, I only managed to go to the bathroom once. Before giving birth, I was hospitalized for a week because of high blood pressure. I was extremely exhausted.” (p13)

Maintaining the mother’s mental health

According to the mothers, the small size and low weight of late preterm neonates compared to full-term neonates, along with the challenges that followed, led to feelings of helplessness, loneliness, fear, and anxiety. Some mothers found the constant care of the neonate to be exhausting and overwhelming. Additionally, many mothers experienced guilt over giving birth to a late preterm neonate. One mother shared her thoughts, saying, “I feel like I’m not strong enough and cannot be a mother. I can’t handle a neonate crying, even though I know it’s normal. I wish the neonate would be like a doll and not cry. It seems like my patience is very limited, and this bothers me a lot.” (p10)

Addressing concerns

Mothers expressed various concerns regarding their neonates, such as insufficient milk supply, the impact of the mother’s medication on the neonate, the possibility of transmitting underlying diseases from the parents to the neonate, and worries about the neonate’s future. One mother shared her specific worry, saying “I was worried about my neonate’s jaundice and her body temperature dropping. I was told that a late preterm neonate’s body should not be cold. I would regularly check her body temperature to ensure she wasn’t cold. When her body temperature was normal, I would know that her room temperature was suitable for her. I used gloves and socks for added warmth to her. However, when I noticed an increase in jaundice, I attempted to reduce her clothing to regulate body heat. Because I had heard that neonates’ jaundice is due to their high body temperature. Of course, I had concerns about it even before my neonate was born due to my diet during pregnancy, I was eating excessive amounts of Baklava.” (p2)

Some mothers were also worried about the occurrence of seizures, cessation of breathing and suffocation, and a decrease in the oxygen level of the neonate’s blood. One participant mentioned, “I was stressed about my neonate’s low blood oxygen levels at birth and wanted to prevent any similar problems from occurring again. I constantly monitored his breathing and even placed my hand in front of his nose to ensure proper breathing and prevent any issues or wheezing. The movement of his blanket also reassured me that my neonate was breathing properly” (p18).

Access to reliable information sources

Mothers repeatedly expressed their frustration with the inconsistent information provided by different sources, the difficulty in accessing accurate information, and the lack of specialized information sources available at all times. One mother shared her experience, stating, “During my pregnancy, I attended childbirth classes where they emphasized the importance of exclusively breastfeeding and not using formula milk. The health center also gave me the same advice. However, I struggled with a low milk supply in the early days. To increase my milk supply, I drank a lot of water and herbal medicine to increase breast milk, but despite this, my milk was still low. As a result, my neonate ended up being hospitalized for dehydration and jaundice. If I had sought advice from the doctor or nurses earlier and given him formula from the beginning, this could have been avoided. It was a heartbreaking experience because my child starved” (p5).

Another challenge faced by mothers was obtaining reliable information from the Internet and virtual platforms. One mother mentioned, “Initially, I used to search extensively on the Internet for information about ultrasounds, tests, and my neonate’s health issues. However, I realized that relying on the Internet was causing me stress and anxiety. I would end up taking my child to the doctor for every little concern. Eventually, I learned that the Internet is not a trustworthy source, and I stopped relying on it” (p4).

Access to support groups

Many mothers expressed the need for support from their husbands and family members in caring for the neonate at home. One mother shared her exhaustion, saying, “I’m constantly tired since bringing my neonate home. There’s so much work to do. I have only my husband at home, and he helps me a little when he returns from work. My mother-in-law only comes to assist with bathing the neonate. My mother lives in another city. She stayed with me for a week after I gave birth, but then she had to leave. Now, I’m all alone, and I have so many questions” (p13).

Some mothers also mentioned the lack of support from organizations and social institutions as well as the need for financial assistance. One participant expressed her skepticism toward online information and the desire for expert guidance, stating, “I can’t trust everything I read on the Internet or virtual platforms. Sometimes, I come across information that stresses me out or makes me think my neonate has a problem. My husband says we can’t be sure who writes these things on those websites. If there were experts behind these materials, I would feel more confident in trusting them. I wish there were somewhere I could turn to 24/7 for reliable answers and support whenever I have questions or problems” (p3).

Discussion

The purpose of this study was to elucidate the needs of mothers who are providing short-term care for late preterm neonates at home. The main needs identified were the need for further information, the need to enhance caregiving skills, and the support needs. The study revealed that mothers require additional information on how to care for their neonates at home. Considering the challenges associated with prematurity and the complexity of daily care, issues like follow-up support and empowerment for mothers after discharge are particularly crucial in ensuring proper care for the neonate at home.[25]

Premji et al.[26] conducted a study that confirmed that many mothers, upon discharge, lacked knowledge about the differences between late preterm and full-term neonates, leading to unexpected caregiving challenges at home. These mothers expressed a desire for more information on what to expect and the realities of caring for these neonates at home. The study also highlighted that when medical professionals normalize the neonates’ condition and focus on their good health, they may provide less information to the mother, thereby leaving her unprepared for the challenges of home care. Quiñones-Preciado et al. (2023)[27] also found that caregivers, upon arriving home, face the neonate’s needs alone. Despite receiving training, they lack structured knowledge about caregiving and require more information on bathing, recognizing warning signs, responding to accidents, and breastfeeding. Additionally, parents of late preterm neonates need to be educated about the signs, symptoms, and methods of managing prematurity.[28] The findings of these studies align with the results of our study, emphasizing the mothers’ need for more information to effectively care for their neonates.

Acquiring caregiving skills has several benefits for caregivers, including increased comfort, improved performance, self-confidence, and self-efficacy.[6] Late preterm neonates require specialized care due to their low birth weight, and the methods of caring for them differ from those of healthy full-term neonates. Improper care can have negative consequences, such as vomiting and suffocation. However, caregivers of late preterm neonates often have limited knowledge and skills in caregiving.[29] Taking care of a neonate at home with special needs can be challenging and anxiety-inducing for parents. Many parents are not adequately prepared for the birth of a neonate and the need to learn skills such as ensuring the neonate’s safety, maintaining hygiene, and recognizing signs and symptoms related to the neonate’s health.[28,30]

A study by Premji (2017) highlighted the need for mothers to acquire nutritional skills as feeding can be a trial-and-error process with uncertainty, requiring significant effort from the mother. The study also found that mothers may not recognize undesirable feeding behaviors and may consider these behaviors normal.[26] Another study revealed that caregivers often seek help from professionals, relatives, friends, books, social networks, medical personnel, and other communication channels to acquire caregiving skills.[29] The findings of these studies align with the present study, emphasizing the importance of mothers improving their caregiving skills to care for late preterm neonates at home.

The results of this study indicate that there is limited attention given to the support needs of mothers in their role as parents and individuals who have experienced pregnancy and childbirth. Many mothers expressed their inability to care for themselves and their neonates, as well as difficulty managing their emotions, following the neonate’s discharge. It is crucial for the mother to immediately care for the neonate after birth, which can be overwhelming. Neglecting the mother’s long-term emotional well-being can have negative effects on her physical and mental health as well as her quality of life. This may lead to issues such as sleep and concentration disorders, difficulty making decisions, and challenges in communicating with family and friends.[27] Numerous studies have shown that mothers of late preterm neonates face mental health challenges and require physical and emotional support to effectively fulfil their role.[25,31] The demands of tasks like breastfeeding, changing diapers, administering medications, and bathing can leave the mother feeling weak and fatigued.[29]

Similar to this study, many other studies have highlighted the guilt experienced by mothers of late preterm neonates. They often blame themselves for the neonate’s suffering and view preterm birth as a punishment for their actions.[32,33,34] This can lead to acute stress disorder, characterized by self-blame and feelings of guilt or inadequacy.[29] Providing continuous positive reinforcement to the mother from her family, healthcare team, and other social support sources can enhance her overall well-being.[25] The findings of this study also revealed the concerns and anxieties mothers have about the neonate’s future, the potential effects of medications taken by the mother, transmission of underlying diseases, seizures, breathing cessation, suffocation, and decreased oxygen levels in the neonate’s blood. Afsharnia (2021) has stated in her study that caregivers are worried about exposure to the risk of neonates.[33] Other studies have also reported mothers’ worries regarding inadequate growth, proper weight gain, the decrease in the oxygen level of the neonate’s blood, and the reliability of information received about neonate care.[29]

As information technology continues to advance, more and more parents are sharing their experiences through social networks and other platforms, seeking out individuals who have gone through similar situations to create social support networks. Typically, mothers share their emotional reactions and attempt to reduce their stress by sharing their own stories and reading about the experiences of others.[29] However, the participants in this study found obtaining information from virtual spaces and the Internet to be challenging and stressful. They expressed a desire to obtain information from reliable sources. Research has indicated that parents often become more anxious after reading negative prognosis about late preterm neonates on social networks. They tend to distrust information obtained from online networks of other mothers and prefer clear instructions from reliable experts.[31] Additionally, due to the evolving information needs of mothers over time, access to reliable sources of information after discharge is crucial.[35] The mentioned studies have also highlighted the challenge of providing inconsistent and conflicting information from different sources, which aligns with the findings of this study.

Several studies, including the present one, have emphasized the mother’s need for support from her husband, family, organizations, social institutions, and financial assistance. One study identified the mother’s need for support from her husband as the primary source and also mentioned the importance of support from the other family members too.[34] Premji has mentioned the need for an integrated care system to address complex care problems and the use of telemedicine to provide support from community specialists.[26] Another study has mentioned the support needs of mothers from community specialists through telemedicine. This study has shown that mothers who received video counseling at home experienced increased self-confidence, particularly those who had negative experiences related to physical exhaustion and dissatisfaction with social support. Kim et al.[31] have also highlighted the need for support in managing long-term complications of the neonate and addressing insurance and financial matters. The findings of these studies regarding the support needs of mothers align with the findings of the present study.

Limitations and Recommendation

While many studies have explored the needs of parents with late preterm neonates, most have focused on hospitalized neonates. This study is one of the few that specifically delve into the experiences of mothers with late preterm neonates, aiming to identify their perceived needs after assuming responsibility for their care at home. It is important to note that this study encountered limitations, such as difficulties in accessing participants due to the lack of a registration system for late preterm neonates in Golestan province. As a result, the study relied on clinics and health centers to recruit participants. Moreover, the time-consuming nature of caring for late preterm neonates meant that mothers had limited availability for interviews, necessitating multiple referrals and home visits to complete the data collection process. Given the limitations of this study, it is recommended that future research employs quantitative or qualitative approaches utilizing community-based cohorts or registration systems. This would allow for a larger, more representative sample and potentially capture objective health data.

Conclusion

This study aimed to investigate the needs of mothers in caring for late preterm neonates at home, as perceived by the mothers themselves. The results indicated that mothers require assistance from reliable and trustworthy sources to effectively care for their late preterm neonates at home. The findings also emphasized the importance of providing information and training in essential caregiving skills to meet the needs of mothers in this situation. Additionally, the study highlighted the mental and physical pressures faced by mothers in caring for late preterm neonates and emphasized the need for comprehensive support. Considering the lack of established clinical guidelines in Iran for this specific situation, these findings can guide policymakers and researchers in developing home care protocols that address the needs of mothers with late preterm newborns. This aligns with the goals of the fifth development program of the country and strategic goal number 75 of the Ministry of Health. By developing and implementing such guidelines, we can empower mothers with self-care knowledge, improve the quality of care, potentially decrease neonatal rehospitalization rates, and alleviate the financial burden on families, the healthcare system, and society.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.