Discharge preparation for parents of preterm infants in the neonatal intensive care unit: A qualitative study revealing experiences and needs

Abstract

During the discharge preparation process for preterm infants, parents face not only emotional and caregiving challenges but also a need for sufficient informational and social support. This study aims to explore the emotional distress, information needs, social support, and the current status of communication with medical teams that parents encounter during discharge preparation. This study included 120 parents (72% mothers, 28% fathers), with an average age of 31.4 years. A questionnaire survey was conducted to collect data on participants’ background, emotional experiences, caregiving skills, information needs, social support needs, and communication with the medical team. 72% of parents reported emotional distress, and 46% felt anxious about the upcoming discharge. 63% of parents indicated an improvement in caregiving skills, but 22% still expressed a lack of confidence. About 63% of parents felt that the information they received was insufficient, particularly regarding long-term care and complication management. 72% of parents expressed a desire for more information on disease management. 75% of parents emphasized the importance of family emotional support, 64% wished for more support from the medical team, and 55% desired community resource support. 63% of parents believed there were communication gaps with the medical team, especially in areas such as changes in health conditions and discharge handovers. 54% of parents stated that the medical team had not sufficiently explained health status changes and how to manage emergencies. Parents require more emotional support, informational support, and professional training during discharge preparation, particularly in caregiving skills, emergency handling, and disease management. Improving communication and collaboration between medical teams and parents is crucial for enhancing parents’ confidence and caregiving skills.

1. Introduction

Preterm birth is one of the leading causes of mortality in children under 5 years old globally.^[1] According to the World Health Organization, approximately 15 million infants are born preterm each year, accounting for more than 10% of all births. Preterm infants are at a higher risk of health complications, including respiratory distress, feeding difficulties, and neurodevelopmental disorders. However, with advancements in modern medical technology, more preterm infants are surviving the early crisis in neonatal intensive care units (NICUs) and are discharged successfully.^[2,3] Yet, discharge from the NICU does not mark the end of care; instead, it signifies the beginning of home care, a transition period that has a significant impact on the infant’s growth, development, care outcomes, and the parents’ psychological well-being.

Despite the increasing survival rates of preterm infants, the caregiving challenges they face after discharge remain severe. Preterm infants often require continued special care after discharge, particularly in terms of long-term care and management of complications.^[4] These challenges demand that parents not only have basic caregiving knowledge but also acquire the necessary skills and emergency management abilities. If parents receive adequate support during the discharge preparation process, especially in emotional support, caregiving skills training, and medical information guidance, it can significantly improve the preterm infant’s growth and development, as well as reduce readmission rates.^[5–7] Therefore, the quality of care during the discharge preparation phase directly influences the long-term health of preterm infants and the caregivers’ ability to provide care.

Emotional preparedness, caregiving ability, and social support needs are critical factors that cannot be overlooked during the discharge preparation of preterm infants. Research has shown that many parents still lack confidence when their child is discharged, particularly when faced with unexpected health issues, leading to feelings of helplessness and anxiety. This emotional distress often arises from concerns about future health changes in their child and a lack of relevant caregiving knowledge and skills.^[8] Therefore, ensuring that parents receive personalized discharge guidance, particularly in disease management, handling common complications, and emergency response, is a core objective of discharge preparation.

However, many medical institutions have yet to provide personalized discharge preparation programs for the parents of preterm infants. Existing discharge guidance is often general and routine, lacking the personalized content required for the specific needs of preterm infant care.^[9] This lack of personalized and targeted discharge guidance leads to parents feeling inadequately informed, with insufficient caregiving skills, thus unprepared for home care. Medical research and practical explorations indicate that parents should receive more detailed emotional support and caregiving skills training during discharge preparation, as this not only helps boost their confidence but also significantly improves the quality of care, reducing potential risks in home care for preterm infants.^[10]

Social support plays a crucial role in the discharge preparation of preterm infants. Studies have shown that family support, especially from spouses, can effectively reduce parents’ anxiety and emotional burdens, enhancing their confidence in caring for preterm infants. Additionally, professional support from medical teams and community resources, particularly support from parent support groups and preterm infant care guidelines, are important needs for parents during discharge preparation.^[11] However, many parents still encounter difficulties in communicating with the medical team, especially in areas such as health condition changes and care handover, often lacking sufficient information and guidance, which negatively impacts their discharge preparation.

Therefore, discharge preparation for preterm infants is not only a continuation of medical care but also a comprehensive process involving emotional support, information dissemination, skills training, and social support. To effectively help parents transition smoothly to home care, healthcare institutions need to provide more personalized health education and continuous care plans. These measures help enhance parents’ caregiving confidence, reduce uncertainty and anxiety in post-discharge care, and improve the quality of health management for preterm infants.

This study aims to conduct in-depth interviews with caregivers of preterm infants to analyze their actual experiences and needs in discharge preparation. The goal is to explore how healthcare institutions can use this information to create more personalized health education and continuous care plans, helping parents adequately prepare for the care of their preterm infants and ensuring the healthy growth of preterm infants in the home environment.

2. Methods

2.1. Participant recruitment and selection

This study was approved by the Ethics Committee of Xi’an Medical University. This study used a questionnaire survey method, collecting parents’ actual experiences and needs during the discharge preparation process for preterm infants through self-administered questionnaires. A total of 120 parents were included in the study.

Inclusion criteria:

1. Participants were the primary caregivers of preterm infants;

2. The child had received treatment in the NICU and was about to be discharged;

3. Participants were willing to participate in the study and sign an informed consent form;

4. Participants were able to understand and complete the questionnaire.

Exclusion criteria:

1. Participants did not directly participate in the care of the preterm infant;

2. The participant’s child had been discharged for more than 3 months;

3. Participants had cognitive or mental disorders that would prevent them from completing the questionnaire.

Participants were recruited through the pediatric department of the hospital, and the research team communicated with parents to ensure that those meeting the inclusion criteria were able to participate in the study.

2.2. Data collection

This study used a self-administered questionnaire, which covered various aspects of parents’ experiences and needs during the discharge preparation process for preterm infants. The questionnaire was divided into the following sections:

1. Basic information: This section collected demographic data, including the parents’ age, gender, education level, family income, place of residence, and the health status of the preterm infant.

2. Emotional experiences: This section assessed the emotional distress, anxiety, and feelings of loneliness that parents experienced while caring for their preterm infants.

3. Caregiving ability: This section evaluated parents’ self-assessment of their caregiving skills, including knowledge of care, confidence in handling emergencies, and general caregiving ability.

4. Information needs: This section inquired about the parents’ information needs related to disease management, caregiving techniques, equipment use, and other aspects of care.

5. Social support: This section assessed parents’ needs for family support, support from the medical team, and community resources.

6. Medical team communication: This section explored the communication between parents and the medical team, including their expectations regarding discharge guidance and health status transitions.

The questionnaire employed a Likert scale for scoring, allowing participants to select options based on their personal experiences. This approach ensured that the data could be quantified and subjected to statistical analysis.

2.3. Data analysis

The interview data were analyzed using thematic analysis. The researchers performed a detailed, sentence-by-sentence analysis of the transcribed interviews, identifying the main themes and subthemes related to discharge preparation. Through coding the interview content, the researchers extracted several core themes such as emotional support, caregiving knowledge, information needs, social support, and communication with the medical team, and analyzed the relationships and influences among them. This process was carried out independently by multiple researchers, and the results were discussed to ensure the credibility and consistency of the analysis.

2.4. Ethical considerations

This study strictly adhered to ethical principles. All participants signed an informed consent form before participating, which fully explained the purpose, methods, potential risks, and confidentiality measures of the study. Participants’ personal information and questionnaire results were kept confidential and used solely for the purposes of this research. Participants had the right to withdraw from the study at any time, and their withdrawal would not affect their medical services in any way.

3. Results

3.1. Participant background, emotional experiences, and caregiving ability

This study included 120 parents, of whom 72% were mothers and 28% were fathers, with an average age of 31.4 years (range: 22–42 years), as shown in Table 1. Approximately 56% of the parents had a university degree or higher, 38% had a middle or high school education, and 6% had an education level of primary school or below. 45% of the parents were first-time caregivers of a preterm infant, 30% had experience with a preterm infant, and 25% had cared for multiple preterm infants.

Table 1.

Participant background, emotional experiences and caregiving ability status.

Participant characteristic	Category	%/Details
Participants	Mother	72
	Father	28
Average age		31.4 yr
Knowledge of care	Limited knowledge	68
	Good knowledge	20
	Moderate knowledge	12
Emotional burden and loneliness	Yes	72
	No	28
Anxiety about discharge	Yes	46
	No	54
Lack of confidence in caregiving	Yes	37
	No	63
Improvement in caregiving ability	Yes	62
	No	38
Lack of confidence in caregiving ability	Yes	22
	No	78
Income (Yuan)	<80,000	59
	>80,000	41
Place of residence (Urban/Rural)	Urban	69
	Rural	31
Twin birth		23
Newborn gender	Male	44
	Female	49
	Both	7
Gestational age (weeks)	29–32 wk	30
	33–34 wk	49
	35 wk and above	21
Birth weight (grams)	1000–2000	41
	2000–2500	34
	2500–3000	25
Length of hospital stay	7–14 d	47
	15–30 d	31
	31 d and above	22

Regarding income, 59% of parents had an annual income of <80,000 RMB, while 41% had an income above 80,000 RMB. About 69% of the parents lived in urban areas, while 31% lived in rural areas. Approximately 23% of the newborns were twins, some of which were of different sexes.

In terms of caregiving knowledge, 68% of parents reported having limited knowledge of caregiving before their child was admitted to the NICU, 20% reported having good knowledge, and 12% reported having moderate knowledge. Regarding emotional experiences, 72% of parents reported feeling emotional distress and loneliness, especially when unable to be in close contact with their child. 46% of parents expressed anxiety about the upcoming discharge, fearing that they would be unable to care for their child independently, particularly when special care or medical equipment was required, which intensified their anxiety. 37% of parents reported a lack of confidence in caregiving, especially when faced with emergency situations, feeling helpless.

Nevertheless, 63% of parents indicated that their caregiving ability had improved during the discharge preparation phase, particularly with the training and guidance provided by the hospital, which increased their confidence in handling preterm infant care. However, 22% of parents still reported a lack of confidence, especially in responding to emergencies.

These results suggest that parents face considerable emotional distress during the discharge preparation process, particularly in terms of caregiving confidence and addressing caregiving needs. The lack of information and training, especially regarding caregiving skills and emergency management, remains a major issue for parents.

3.2. Information and caregiving knowledge needs

In this study, approximately 63% of parents reported that the information they received in the NICU was insufficient, especially regarding long-term care and complication management. This lack of information left them inadequately prepared for potential future health issues related to their preterm infant. Additionally, 72% of parents expressed a desire for more information on disease management and personalized discharge guidance to better care for their child and manage their health, particularly in handling common complications such as respiratory issues and feeding difficulties.

Furthermore, 77% of parents indicated a strong need for more preterm infant caregiving training, particularly in basic caregiving skills such as feeding techniques, the use of respiratory support equipment, and medication management, as shown in Figure 1.

Figure 1.

Information and care knowledge needs.

3.3. Parents’ social support needs

In this study, approximately 75% of parents reported that emotional support from family members was crucial during the discharge preparation process. This indicates that, during the discharge of their child, parents require close family support, especially when facing the high-pressure task of caring for a preterm infant. Family support was found to significantly alleviate their anxiety and emotional burdens. Specifically, about 68% of parents relied on help from their spouse or direct relatives, and this support was particularly important in providing emotional comfort and sharing the responsibility of caring for the preterm infant.

Additionally, about 64% of parents expressed a desire for more professional support from the medical team, particularly in post-discharge caregiving guidance and emergency response. Parents hoped the medical team could provide detailed care plans, especially regarding how to handle potential health issues, such as respiratory difficulties and feeding problems. Professional support from the medical team was considered a key factor in enhancing parents’ confidence and helping them care for their child more effectively.

Furthermore, approximately 55% of parents indicated that they hoped to receive more support from community resources, particularly parent support groups and preterm infant care guidelines. The specific results are shown in Figure 2.

Figure 2.

Parents’ social support needs.

3.4. Communication and collaboration with the medical team

Approximately 63% of parents reported that there was a gap in communication with the medical team, particularly regarding health status changes and the handover of care. About 37% of parents believed that communication was sufficient, indicating that many parents did not receive enough health information during their child’s hospitalization, especially at discharge, when they hoped to receive detailed care handover information for a smooth transition to home care.

Regarding the explanation of health status changes, 54% of parents felt that the medical team had not sufficiently explained the changes in their child’s health condition and how to manage emergencies. In contrast, 46% of parents felt that the explanation was adequate. Parents believed that this lack of communication left them lacking confidence in post-discharge care, particularly when their child’s health status suddenly changed or an emergency situation occurred, leaving them feeling overwhelmed and anxious.

In terms of emergency management, 61% of parents felt that the medical team had not sufficiently explained how to handle emergencies, while 39% believed the explanation was adequate. This lack of communication and collaboration, especially at critical moments, negatively impacted the emotional state of parents and reduced their confidence in caregiving.

Specific details are shown in Table 2. Overall, parents expect more communication and support from the medical team at key moments, particularly in explaining health status changes and handling emergencies. Communication gaps remain a major issue.

Table 2.

Communication and collaboration with medical team.

Participant characteristic	Category	%
Communication gap with parents	Believe communication is insufficient	63
	Believe communication is sufficient	37
Medical team’s insufficient explanation of health changes	Believe explanation is insufficient	54
	Believe explanation is sufficient	46
Medical team’s insufficient explanation of emergency handling	Believe explanation is insufficient	61
	Believe explanation is sufficient	39

3.5. Multi-dimensional support needs during discharge preparation

In this study, approximately 62% of parents expressed a desire for psychological counseling during the discharge process to help alleviate anxiety and distress. Faced with the challenges of caring for a preterm infant, especially in the post-discharge period, many parents experience emotional pressure and anxiety. Psychological counseling was considered an effective support method to help parents adjust their mindset, reduce emotional burdens, and better care for their child while adapting to life after discharge.

Furthermore, about 46% of parents indicated a desire to join parent support groups for preterm infants to share experiences with other parents. Parent support groups provide a platform for parents to communicate and share experiences, while preterm infant care guidelines offer systematic knowledge to help parents better manage caregiving challenges. This underscores the critical importance of social support for parents, as shown in Figure 3.

Figure 3.

Multifaceted support needs in discharge preparation.

4. Discussion

The birth and hospitalization of a preterm infant represent both a challenge and responsibility for parents. Due to higher risks such as respiratory distress, feeding difficulties, and developmental delays, parents must not only master caregiving skills but also receive emotional and social support.^[12] Successful discharge depends on equipping parents with adequate home-care abilities, which is crucial for infant development and reducing readmission. Proper discharge preparation has been shown to improve caregiving outcomes and long-term health.^[13] However, many institutions still lack personalized guidance, limiting the smooth transition from hospital to home.

Our findings align with previous studies,^[14,15] showing that parents commonly experience emotional distress, isolation, and limited confidence, particularly when facing emergencies. About 72% of parents in our study reported emotional burden and loneliness, consistent with earlier results. A key issue remains insufficient information: 63% reported inadequate guidance, especially for long-term care and complication management, echoing prior research.^[15] Parents expressed strong needs for disease management information and individualized discharge plans, which should guide future program design.

Social support also plays a critical role. Family support can reduce anxiety and improve confidence,^[16] and 75% of parents in our study highlighted its importance. Thus, discharge preparation should emphasize family involvement and collaboration. Communication with medical teams is another major gap: 63% of parents reported insufficient information regarding health status and emergency management, similar to previous findings.^[17–19] Strengthening communication and providing detailed guidance are essential to improve parents’ confidence.

We recommend developing personalized discharge plans with tailored education and training, along with continuous support systems such as parent groups and community resources. These can reduce isolation, enhance confidence, and provide practical caregiving strategies.^[20,21] Overall, improving information provision, emotional and social support, and parent–medical team communication can significantly strengthen caregiving quality. Future research should focus on designing individualized guidance and optimizing team support during discharge preparation.

5. Conclusion

This study, based on a survey of 120 parents of preterm infants, highlights the major challenges in discharge preparation, including emotional distress, limited confidence, and insufficient information, especially in caregiving skills and emergency management. Family support and effective communication with medical teams are crucial for strengthening parents’ confidence and caregiving capacity. To improve discharge outcomes, healthcare institutions should provide personalized guidance, continuous skills training, and enhanced emotional support. Strengthening systematic health education and social support can not only reduce parents’ anxiety but also improve preterm infants’ health, lower readmission rates, and promote the well-being of families.

Author contributions

Conceptualization: Jie Jiao, Huan Liu.

Data curation: Jie Jiao, Huan Liu.

Formal analysis: Jie Jiao, Huan Liu.

Validation: Huan Liu.

Visualization: Huan Liu.

Writing – original draft: Jie Jiao, Huan Liu.

Writing – review & editing: Jie Jiao, Huan Liu.