A qualitative study on the caregiver burden experience in home reflux enema management of infants with congenital megacolon

ABSTRACT

Objective

This study aims to explore the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema. The findings will provide a basis for developing targeted and effective nursing interventions.

Methods

A phenomenological research approach was employed. From October 2022 to January 2023, semi-structured in-depth interviews were conducted with 12 caregivers of infants with congenital megacolon undergoing home reflux enema in a tertiary paediatric hospital in Fujian Province. The collected data were analysed and organized using the Colaizzi’s 7-step analysis method, leading to the identification of key themes.

Results

The analysis yielded three major themes concerning the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema: inadequate disease-related knowledge, presence of multiple pressures during the caregiving process, and a desire for greater support.

Conclusions

This study employed qualitative interviews with the caregivers of 12 children with congenital Hirschsprung’s disease undergoing home reflux enema, and the feelings of caregivers of children with reflux enema at home after discharge were deeply understood. It is recommended to implement positive psychological interventions based on the PERMA model and incorporate “Internet + collaborative nursing” to provide caregivers with professional knowledge, address their pressures and needs, and promote their well-being while enhancing nursing abilities.

KEYWORDS:

• Hirschsprung’s disease
• reflux enema
• home care
• burden experience
• Children and infants

Introduction

Hirschsprung’s disease (HD), also known as congenital megacolon, is characterized by the absence of ganglion cells in the submucosal and myenteric plexuses of the intestinal wall, leading to a loss of bowel motility and intestinal obstruction (Qian & Shaotao, 2018). HD is one of the most common congenital diseases affecting the lower gastrointestinal tract, with an incidence of approximately 1 in 5,000 live births (Heuckeroth, 2018; Wester & Granström, 2017). Without timely treatment, it can have severe implications on the body, even posing a life-threatening condition (Quande, 2021). Surgery is the most effective treatment for HD, and bowel preparation is a routine part of preoperative care, playing a crucial role in ensuring the smooth progress of the surgery. Effective preoperative bowel preparation requires complete clearance of faecal matter from the intestines and reduction of bacterial content, which helps to minimize postoperative complications. The quality of preoperative bowel preparation has a significant impact on the surgical outcomes (Dan & Kennedy, 2019; Devane et al., 2017; Zhang, 2017). The optimal age for HD surgery is between 4 and 6 months (Qian & Shaotao, 2018). Infants suspected of having HD in the neonatal period require long-term care (Cairo et al., 2018). Physicians often advise their families to perform home reflux enemas for 2–3 months before the surgery. Reflux enemas are invasive procedures that can cause discomfort and persistent crying in infants, leading to increased anxiety among family members. Improper handling of the procedure can also result in physical harm to the child (Jia & Wei, 2019). Caregivers with HD often experience frustration, anxiety, and a heavy caregiving burden when faced with the challenging task of home care and managing long-term complications (Miaomiao, 2021). However, current research primarily focuses on postoperative follow-up and treatment (Shen et al., 2020), with limited attention given to the care involved in home reflux enemas. Lu et al (Lu et al., 2019) demonstrated the feasibility and effectiveness of early home enemas in newborns and infants. In comparison to quantitative studies, qualitative research is better suited for in-depth exploration of caregivers’ nursing issues, difficulties, and experiences in the process of home reflux enemas. Therefore, this study adopts a qualitative research approach to investigate the experiences of caregivers of infants undergoing home reflux enemas, aiming to provide a basis for developing targeted intervention strategies.

Objectives and methods

Research design

Descriptive phenomenology was adopted in this study. Descriptive phenomenology, led by Husserl, originated from psychology, emphasizing “epistemology”, focusing on the experience that human consciousness can perceive and describing it. It pays more attention to the life experience of the research object itself and is suitable for revealing the universal essence of a phenomenon. In this study, the perception and needs of main caregivers of children with Hirschsprung’s disease during home reflux enema were discussed through in-depth interviews commonly used in descriptive phenomenology.

Study participants

This study is designed as a descriptive phenomenological study, and the caregivers of children with home reflux enema are interviewed by in-depth interviews. The caregivers are recruited through the members of the research group. The maximum variation sampling strategy in the objective sampling method was adopted, and the sampling followed the maximum differentiation principle of children’s age, gender and weight, as well as the gender, age, education level, occupation and monthly income of caregivers, and selected representative research objects. Using purposive sampling, caregivers of Hirschsprung’s disease (HD) patients discharged from a tertiary paediatric hospital in Fujian Province between 1 October 2022, and 31 January 2023, were selected as study participants. Sample size is based on the principle of information saturation, that is, the interview data appear repeatedly, and no new topics appear in data analysis. The sample size was determined based on data saturation. Inclusion criteria for caregivers were as follows: (1) First-time visit and meeting the relevant diagnostic criteria for HD, confirmed through anorectal manometry and barium enema examinations; (2) Not currently undergoing surgical treatment, with the caregivers having independently completed three reflux enema procedures before discharge; (3) Caregivers (caring for the child for ≥3 months) aged below 65 years, with clear consciousness and accurate language expression. Exclusion criteria were as follows: (1) Presence of life-threatening organic diseases in the child; (2) HD patients with severe coexisting digestive tract malformations or other diseases that may interfere with the treatment plan; (3) Caregivers in an employment relationship; (4) Participants who withdrew from the study midway. A total of 12 participants were included in this study. All participants voluntarily participated in the study. General information about the HD patients and caregivers is presented in Table I. To protect the privacy of participants, their names were replaced with the code numbers N1 ~ 12. This study was approved by the Medical Ethics Committee of Fujian Children’s Hospital (2022ETKLR08032) and informed consent was signed with the family members.

Table I. General information of study Participants (n = 12).

Caregivers									Patients
Number	Gender	Age (years)	Residence	Relationship	Education	Occupation	Monthly income (RMB)	Medical insurance	Gender	Age (months)	Weight (Kg)
N1	Female	28	Countryside	Mother	Junior school	Farmer	1000–2000	Self-funded	Male	2	4.1
N2	Female	32	City	Mother	Undergraduate	Office worker	5000–6000	Urban resident	Female	3	5.2
N3	Male	56	Countryside	Grandpa	illiterate	Farmer	1000–2000	Self-funded	Male	4	5.2
N4	Female	26	Countryside	Mother	Junior school	Office worker	2000–3000	Self-funded	Male	2	4.6
N5	Female	29	City	Mother	Junior college	Office worker	4000–5000	Urban resident	Male	3	5.1
N6	Female	34	Countryside	Mother	Primary school	Farmer	1000–2000	New rural cooperative	Male	18	9.6
N7	Female	58	City	Grandma	Technical School	Teacher	3000–4000	Urban resident	Male	1	3.6
N8	Male	32	City	Father	Undergraduate	Civil servant	7000–8000	Urban resident	Female	1	3.6
N9	Female	61	Countryside	Grandma	illiterate	Farmer	1000–2000	Self-funded	Male	2	4.1
N10	Female	28	Countryside	Mother	Junior school	Office worker	3000–4000	New rural cooperative	Female	3	4.8
N11	Female	31	Countryside	Mother	Junior school	Farmer	1000–2000	New rural cooperative	Male	4	5.3
N12	Male	30	City	Father	Junior college	Office worker	4000–5000	Urban resident	Male	5	5.8

Research methods

Determination of research outline

The interview outline for this study was initially developed through a literature review (Kallio et al., 2016; Miaomiao, 2021; Rong & Wenjia, 2020; Tian, 2022) and preliminary discussions based on the research objectives (because the interview content was adjusted according to the pre-interview, the interview results were not included in the data analysis). After conducting pre-interviews with two caregivers and discussing within the research team, the final interview outline was established. The outline includes the following main points:

1. How much do you currently know about Hirschsprung’s Disease (HD)? Do you know what to pay attention to when taking care of your child?

2. What differences do you feel between taking care of your child in the hospital and at home?

3. How has your child’s illness affected your daily life?

4. What do you find most challenging in taking care of your child at home?

5. How do you cope with these challenges?

6. What kind of assistance and support do you hope to receive?

7. What are your expectations for your child’s treatment and recovery?

Data Collection Methods

After the child’s discharge, the researcher contacted the caregiver by phone on the 7th day and explained the purpose and methods of the study, promising to protect their privacy. The researcher sought their consent and cooperation, ensuring that the research results would only be used to understand the real experiences of caregivers in home care for children undergoing colonic reflux enema, without affecting future treatments. One-on-one interviews were conducted in a quiet and undisturbed environment, chosen to be convenient for the interviewee and avoiding the child’s caregiving or mealtime. The interviews centred around the interview outline and lasted approximately 30 minutes. The entire interview process was recorded, and the researcher listened attentively without giving any hints, encouraging the interviewee to express their true feelings and experiences. The questioning style and order were adjusted as needed, and efforts were made to collect as much information as possible while also paying attention to recording tone, intonation, and emotional changes. The interviews were stopped when data saturation was reached, i.e., when participant information repeated, and no new themes emerged.

Data analysis and rigor

To ensure the authenticity and accuracy of the data, the interview recordings were transcribed into text within 24 hours after the interviews. The research team members were invited to participate in data analysis, coding, and theme extraction. The data analysis followed the Colaizzi’s 7-step analysis method (Park et al., 2018):

1. Carefully read the original data.

2. Select statements that are of significant importance.

3. Code meaningful viewpoints that repeatedly appear.

4. Summarize the coded viewpoints.

5. Write detailed descriptions.

6. Identify similar viewpoints and refine thematic concepts.

7. Return the written text to the interviewees for verification and validation.

This study improves the credibility from objectivity, authenticity and accuracy. ① Interviewers have been engaged in the clinical work of caring for children with Hirschsprung’s disease for a long time. During their stay in the hospital, they often communicated with the interviewees and established a good trust relationship, so that the interviewees can share sensitive information more freely and ensure the objectivity of the research results. ② The interviewer should master the interview outline in advance, prepare notes and recording pens before the interview, ask questions in time, carefully observe the actions and expressions of the interviewee and make records. ③ During the whole research process, interviewers should restrain their pre-understanding, always listen to the interviewees in a neutral manner, and reduce the influence of their own understanding on the results. ④ Data analysis was completed by two researchers independently. During the analysis process, the data were compared with the original data. When the subject opinions were inconsistent, the research team was invited to conduct analysis and discussion until a consensus was reached. After the completion, it was fed back to the respondents for verification to ensure the authenticity of the research results. ⑤ At the same time, by writing memos and reflective notes, the interview strategies are dynamically adjusted to improve the authenticity and accuracy of the materials. This study follows the Consolidated criteria for reporting qualitative research (COREQ) checklist (Tong et al., 2017).

Ethical considerations

This research was approved by the Ethics Committee of Fujian Children’s Hospital (2022ETKLR08032). Before the interview, the researchers informed the participants and the voluntary nature of their participation. All interviews will be recorded in digital form and all collected data will be kept confidential. All participants were told that they could withdraw from the study at any time or refuse to answer any questions during the data collection process. During the interview, researchers should pay special attention to the negative emotions of participants, and provide appropriate methods of empathy and understanding to avoid the physical and mental harm caused by the long-term existence of negative emotions.

Results

Lack of disease-related knowledge

Lack of understanding of congenital megacolon

In this study, all 12 participants stated that they had never heard of congenital megacolon before and were unaware of the causes of the disease. They felt confused about the subsequent treatment and care. N3: “I’ve never heard of this disease even though I’ve lived for most of my life. The doctor said there was a problem with the intestines, but the child was fine when born. What should we do now? I don’t know if it can be cured.” N8: “After the doctor suspected megacolon, although the doctor mentioned a general treatment plan, I also searched online. Apart from colon reflux enema, I need to pay attention to diet and enteritis, but I’m still unclear about the specifics.” N12: “I didn’t know about this disease before. My wife’s prenatal check-ups were always normal. I didn’t expect the child to be diagnosed with this disease after birth.”

Lack of knowledge about congenital megacolon systemic care

In addition to colon reflux enema, conservative treatment for HD includes dietary regulation, nutritional guidance, and observation and prevention of complications. In this study, most participants focused only on colon reflux enema and neglected other aspects. N1: “Certainly, we need to pay attention to colon reflux enema. The doctor said it’s important, but I don’t know about the other aspects.” N7: “The doctor and nurse emphasized the need for colon reflux enema at home, and we take it very seriously. Is there anything else we need to pay attention to?” N12: “Our main concern is whether we are doing colon reflux enema correctly. But after searching online, I found out that we also need to pay attention to what the child eats. He is about to start complementary feeding, but I don’t know what he can and cannot eat.”

Various pressures during care process

Extreme lack of confidence and anxiety

Most participants in this study expressed a lack of confidence in caring for children with home-based colon reflux enema, often feeling anxious about inadequate care. N1: “A few days ago, I washed it two or three times at the hospital, and the nurse praised me for learning quickly. But when I got home, I found it difficult to insert the tube, and I didn’t dare to apply force. I could only insert it halfway, and I don’t know if it was properly cleaned.” N3: “The child cries every time we do colon reflux enema. I don’t dare to continue washing when I see him cry. I’m afraid of causing intestinal perforation as the nurse warned. I don’t know what to do, and I can only feel anxious.” N5: “I’m less scared when there’s a nurse nearby during colon reflux enema at the hospital. At home, I’m always worried that I might be doing something wrong.” N8: “The first two days at home were fine, but today, I don’t know what happened. The child kept crying during colon reflux enema. I’m also worried that I might be doing it incorrectly, and I feel anxious seeing him cry.”

Excessive concerns about complications

Small bowel colitis related to congenital megacolon is the most common complication of HD, with an incidence rate of approximately 25% to 35% (Liang Peng, 2021). Although colonic perforation due to reflux enema is a rare complication, it can have serious consequences (Chunxiao & Shen, 2017). In this study, all nine participants mentioned that they experienced significant psychological pressure during colon reflux enema due to concerns about severe complications. N1: “During today’s colonic i reflux enema procedure, the child cried loudly despite all attempts to console them. I am concerned about the possibility of inadvertently causing intestinal perforation.“N2: “Since the baby’s return, they have shown a decreased interest in eating, reduced milk consumption, and some abdominal distension. I am apprehensive about the potential development of small intestine and colon inflammation, as mentioned in my online research.“N9: “Whenever I encounter difficulties in inserting the colonic enema tube, I refrain from applying excessive force upwards due to the apprehension of intestinal puncture, which could result in significant complications.”

Disruption of original daily routines

Hirschsprung’s disease requires 2–3 months of consistent colonic reflux enema, with at least two family members involved in the process. Some caregivers feel physically and mentally exhausted, and their lives are disrupted from their original routines. N4: “Now I revolve around the child every day. The child often cries at night, and I haven’t had a good night’s sleep.” N7: “I’m a teacher, and I haven’t retired yet. But now that the child is not even a month old and my wife cannot do colonic reflux enema, I had to apply for early retirement to take care of the child.” N8: “I’m the only one in the family who learned how to do colonic reflux enema. My wife is still in her postpartum recovery period, and I must take care of her too. So I had to take a leave of absence from work. The problem is, if I keep taking leave, the management will have objections.”

Hoping for more support

Systematic and professional guidance

Most caregivers in this study expressed limited understanding of disease care knowledge, and they were aware of the risks associated with colonic reflux enema. However, they were not proficient in the technique and didn’t know how to address problems that arose during the process. N5: “On the second day after returning home, a little bit of reddish blood came out during colonic reflux enema, and we were very nervous. We immediately went to the hospital, but the examination results showed no problems. We made a wasted trip. It would be better if we could immediately get answers from professional medical staff when there’s a problem.” N6: “Although this is my second child, I don’t know how to take care of him with this disease. He’s already one and a half years old, but I don’t know what he can and cannot eat. He’s getting thinner. I just hope a doctor can give us some professional advice.” N9: “There are many difficulties. I have limited education. Although I did it myself at the hospital, I don’t know if I’m doing it right at home without a nurse guiding me, and I don’t know if it’s clean enough.”

Emotional support

Due to lack of experience and knowledge about the disease, some caregivers developed severe fear and anxiety and sought more emotional support. N4: “Since the child got this disease, my mother-in-law complains that it’s because of my diet during pregnancy. Whenever the child cries, she gives me a cold look. She doesn’t consider how difficult it is for me.” N6: “I have to take care of my little brother every day, do colonic reflux enema, and help my older sister with her second-grade homework. I often lose my temper over minor things. Now I feel like I’m on the verge of a breakdown, but nobody understands you.” N11: “When the child cries during colonic reflux enema, they blame me for not doing it correctly. I feel both aggrieved and anxious, but my in-laws don’t allow me to tell anyone about the child’s illness. I can’t share my grievances with others.”

External support

The heavy caregiving burden leaves caregivers feeling overwhelmed, physically and mentally exhausted, and also under financial pressure, hoping for support from the outside. N8: “I have been on leave for two weeks now, and my workplace keeps urging me every day. I also want to go to work, but I just can’t leave. I hope my workplace can consider the difficulties at home.” N10: “My husband is working away, and my parents-in-law don’t live with us or come to help. Sometimes I’m so busy that I can’t even have a meal. It would be great to have someone to lend me a hand.” N11: “Our income depends on this small piece of land. My father-in-law needs medication for his illness, and our little one will need surgery after this illness. The hospital expenses are already high, and the agricultural insurance only covers a small portion. We don’t know if we will have enough for the surgery. It would be great if hospitalization and treatment were not so expensive.”

Discussions

Caregivers face various challenges

Children with Hirschsprung’s disease (HD) have a long course of illness, and HD patients scheduled for surgery usually require home-based reflux enema for a period of 2–3 months. Caregivers not only worry about the physical and mental harm caused by the disease to the children but also bear the heavy economic burden of long-term standardized treatment, which significantly affects the children’s treatment and recovery outcomes (Drews et al., 2017). From the interview results of this study, it can be seen that caregivers’ caregiving experiences are influenced by their education level, family income, and place of residence. Analyzing the reasons, more than half of the caregivers in this study had a high school education or lower. The caregivers’ own learning ability directly determines their grasp of reflux enema techniques and their level of understanding of related disease care knowledge. This results in most caregivers stating that they learned reflux enema techniques through guidance from nurses during hospitalization but found it difficult to perform the procedure and had no idea about feeding when they returned home, constantly worrying about complications. However, those with technical secondary school or above have strong learning ability and thirst for knowledge. They are eager to know more comprehensive disease-related knowledge, and try to obtain more disease-related knowledge through other channels such as the Internet. 83.3% of families had an average monthly income of less than 5000 yuan. Once caregivers experience reduced income due to caring for the children, they become worried about future treatments and their livelihood. More than half of the families in the study came from rural areas, where the low level of medical care requires some families to travel to multiple locations for medical treatment. The feudal ideology in rural areas places significant psychological pressure on caregivers.

Releasing negative emotions to alleviate psychological burden

Constant care pressure can easily lead to different physical and psychological diseases of caregivers, and negative emotional distress reduces their ability to provide high-quality care for patients and has a negative impact on the treatment results of patients (Zhang et al., 2021). This study found that some caregivers experienced severe anxiety and fear when performing reflux enema or caring for the child due to a lack of disease knowledge. Lack of support and understanding from other family members also contributed to the accumulation of negative emotions. This not only affects the caregivers’ physical and mental health but also has a negative impact on the child’s care. Professional psychological doctors are needed to intervene and guide such caregivers, using positive psychology interventions based on the PERMA model. The PERMA model is an expanded framework of positive psychology that encompasses positive emotions, engagement, relationships, meaning, and accomplishment, all of which influence well-being. The PERMA model can help the caregivers engage in positive communication, address their shortcomings, face life with a positive attitude, and enjoy a vibrant life (Su Wan, 2022).

Continuing Care in the “Internet + Collaborative Nursing” Model, providing caregivers with systematic professional guidance.

After the discharge of children with HD, all care tasks such as reflux enema and feeding need to be completed by the caregivers. The caregivers’ understanding and comprehension of relevant knowledge and their mastery of reflux enema directly influence the prognosis and quality of life of the affected children. Therefore, to clarify the important role of caregivers in collaborative nursing, an attempt can be made to construct a family-centred collaborative nursing model, advocating the concept of shared decision-making (Faiman & Tariman, 2019), and encouraging caregivers to participate in the care plan and treatment decisions for the children.

During the continuing care phase, nurses can rely on the “Internet hospital” and build an integrated electronic information platform for “physician-nurse-patient” collaboration through multidisciplinary teamwork. This platform provides services such as intelligent triage, appointment scheduling, online consultations, health education, and disease counselling (Lingli, 2022).

Establishment of a collaborative nursing team: The team primarily includes the head nurse, experienced nurses, general surgeons, nutritionists, and psychological counsellors. This nursing model centres around a well-prepared, proactive, and interdisciplinary nursing team, providing care for proactive and progressive patients and their families (LaVille Thoren & Vista-Wayne, 2021). The team members receive unified training and, under the leadership of the head nurse, engage in brainstorming, discussions, and the formulation of collaborative responsibilities, assessment processes, and nursing protocols. Any problems discovered are addressed promptly. The responsible nurse is responsible for developing nursing intervention plans, standardizing the implementation of nursing plans, and formulating the next nursing plan based on feedback from the patient’s family. The doctor is responsible for assessing test results, dynamically evaluating the patient’s condition, answering questions related to the patient’s condition for the patient’s family, and deciding on follow-up treatment plans. The nutritionist sets personalized nutritional intervention goals for the patient based on the surgeon’s special dietary requirements and growth and development needs, provides dietary guidance, recommends appropriate nutrition ratios and dietary patterns, and participates in the assessment of the patient’s nutritional status. The psychological counsellor dynamically assesses the psychological state of the patient’s family, provides psychological counselling to family members experiencing anxiety and other negative emotions, and conducts face-to-face consultations with patients when necessary, providing psychological support based on the patient’s health needs. The collaborative nursing model actively encourages parents to participate in the care of the child’s illness, becoming the caregivers in the child’s daily care, which helps alleviate the fear and tension caused by the child’s hospitalization (Liqin, 2022).

Through the electronic information platform, caregivers can contact specialized physicians at any time. In addition to describing symptoms, they can communicate with physicians through video communication on the platform and upload information such as the child’s condition, test reports, and medical history from other hospitals. Nurses can provide “Internet + nursing services,” conducting follow-ups and collecting feedback through video, voice, and text forms without being limited by time or location. They can provide targeted guidance on disease knowledge, complementary food selection, and home care procedures, analyse and organize relevant data, and provide support for subsequent case feedback (Shi Yu, 2021), ensuring that the child receives scientific, continuous, and comprehensive care. Furthermore, as caregivers can seek help from medical professionals through the internet in a timely manner, it greatly reduces their anxiety when facing new situations related to the child’s illness and meets their psychological needs (American Heart Association, 2019).

Advantages and limitations

Phenomenological analysis enables researchers to analyse complex data, and understand the experience of caregivers of children with home reflux enema. Because it allows them to talk freely about the stress in the process of care. However, there are some limitations in this study. This paper only discussed the burden of caregivers in home reflux enema, while the care of children with Hirschsprung’s disease is a relatively long process; Longitudinal research should be carried out on the whole process of disease rehabilitation to further enrich the research results; This study is a single-centre study, multi-centre and large-sample studies are urgently needed.

Conclusions

This study employed qualitative interviews with the caregivers of 12 children with congenital Hirschsprung’s disease undergoing home reflux enema, and the feelings of caregivers of children with reflux enema at home after discharge were deeply understood. The results of this paper show that caregivers are under great pressure and facing many challenges in the long-term care process, but they cannot be effectively solved. It highlights the importance of providing caregivers with professional knowledge, addressing their pressures and needs, and promoting their well-being while enhancing nursing abilities. Future research should focus on actively providing caregivers with more professional and systematic disease-related knowledge, pay attention to the pressure and needs of caregivers, and strive to improve their nursing ability and promote their physical and mental health development.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Author contributions

Yuanyuan Fang, the first author, contributed to brainstorming and the design of the experiment, the implementation of the experiments, the collection and analysis of the data, and the drafting of the manuscript. Yuanyuan Fang and Lingjing Teng, Nurse-in-charge; Yulan Kang, Associate professor; Lifang Lin, Nurse practitioner; They all works in Fujian Children’s Hospital (Fujian Branch of Shanghai Children’s Medical Center), College of Clinical Medicine for Obstetrics & Gynaecology and Paediatrics, Fujian Medical University.

Pingping Qiu, corresponding author, contributed to brainstorming and the design of the experiment, the implementation of the experiment, and the drafting of the manuscript. Yulan Kang, the second author, contributed to brainstorming and the design of the experiment and the critical reviewing of the speciality knowledge related to the manuscript. Lingjing Teng, the third author, contributed to brainstorming and the design of the experiment and guided the manuscript revision. Pingping Qiu is the corresponding author, Associate Professor, MSc; She works in School of Nursing in Fujian Medical University.

Ethics approval and consent to participate

This study was approved by the ethics committee of Fujian Children’s Hospital (2022ETKLR08032) and strictly adhered to the tenets of the Declaration of Helsinki. Informed consent has been obtained from legal guardian(s) of all participates.

Consent for publication

The manuscript is approved by all authors for publication.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported by Fujian Children’s Hospital Science and Technology Innovation Startup Fund, No. YCXH202202.

Notes on contributors

Yuanyuan Fang

Yuanyuan Fang, Registered Nurse, the master’s student at the School of Nursing, Fujian Medical University. She is good at qualitative research, and has been working in the pediatric surgery department of Fujian Children’s Hospital for more than ten years, with research areas including the care of pediatric digestive tract and pediatric tumor diseases, as well as interventions for the psychological health and quality of life of related populations.

Yulan Kang

Yulan Kang, Deputy Chief Nurse, Chief Nurse of Fujian Children’s Hospital, a member of the Teaching and Research Office of Fujian Medical University. Her research areas include children intensive care, psychological care, nursing safety, and nursing education.

Lingjing Teng

Lingjing Teng, Registered Nurse, the head nurse of the Department of General Surgery at Fujian Children’s Hospital. Her research areas include neonatal intensive care, nursing of pediatric surgical diseases, and psychological care for children and their families.

Lifang Lin

Lifang Lin, Registered Nurse at pediatric surgery department of Fujian Children’s Hospital. She is good at qualitative research, with research areas including the care of pediatric digestive tract and pediatric tumor diseases.

Pingping Qiu

Pingping Qiu, MSc, Associate Professor in Maternity Wellbeing and Nursing Quality. Qiu’s research has focus on the factors of maternity wellbeing, such as fear of childbirth, and factors of nurses work, such as emotional labor.