Through data analysis, we identified the following five themes: (1) complex emotional response; (2) uncertainty about everything; (3) lack of confidence, anxiety, and helplessness; (4) eagerness for professional support; (5) active adaptation, harvest, and growth (Table 3). Each theme is described below with supporting quotes from the participants.
Diagnosis period (preoperative period)
Theme 1: Complex emotional response
Panic and worry
During this period, parents usually experience ambulance transfer, emergency surgery, and transfer to NICU. The severity and unknown aspect of the disease causes panic and worry, and parents face the difficulty of adapting to the change associated with the caregiving role.
‘The doctor said that my child had intestinal perforation and needed surgery. I was very worried and panicked because the child was only 6 days old and undergoing surgery at such a young age.’—Caregiver #1.
‘I felt very anxious at that time; I was worried whether the child could stand the operation.’—Caregiver #2.
‘The doctor said that my baby's disease was very serious and if it gets worse, my child will die; I am scared, I did not know what to do.’—Caregiver #6.
‘At that time, I felt that my baby's illness was very serious, and I was very flustered. I wanted to save my baby's life. The child must survive.’—Caregiver #22
Guilt and remorse
At the initial stage of hospitalisation, owing to insufficient understanding of the disease, parents often blame themselves, resulting in a deep sense of guilt and doubts about whether they are competent to take on the role of parents.
‘Our twins are test-tube babies. I think it may be my poor health that my babies suffer as soon as they are born.’—Caregiver #20.
‘I am not a qualified mother. I had a bad appetite; I ate less, and I was often in a bad mood when I was pregnant; I think it caused my child to be born prematurely and with a weak physique?’—Caregiver #16.
‘When the doctor told me that the child had a congenital imperforate anus, I thought I must have done something immoral in my last life, and this retribution is on my child.’—Caregiver #18.
Theme 2: Uncertainty about everything
Uncertainty of disease prognosis
After neonates undergo enterostomy their condition is alleviated; however, there may be complications in the temporary stoma of the abdomen after the operation which often makes parents feel uncertain about the prognosis of the child.
‘The doctor told me that the operation was successful, and my mood improved immediately at once, but he said that there were many complications. Now I am still worried about whether my child will get better.’—Caregiver #8.
‘I do not know if the child's stool will be normal. What should I do in case of faecal incontinence? I am worried that it will affect my child for a lifetime.’—Caregiver #17.
‘The doctor said that a large section of the baby's intestines was broken and surgically removed. Will the baby's digestive function be affected?’—Caregiver #9.
‘The child will undergo a second operation in a few months. Can such a young child stand it, and there will be a long time in the process. The doctor said that there would be many uncertain factors. I do not know how much pain the child will experience.’—Caregiver #15.
Uncertainty about the child's current situation
After an enterostomy operation, neonates are often transferred to the NICU for further treatment. Parents cannot accompany their children. They hope to know the condition of the children at all times and see the children. Parents lack relevant knowledge about the progression of the disease, and they hope to receive professional explanations from healthcare professionals to alleviate their anxiety.
‘The doctor made a hole in the child's belly and stuck a bag to collect stools. How long will the bag be stuck, and how can I change it if it is dirty? We do not understand. The healthcare professionals must be professional in this regard, so I hope they can tell us more.’—Caregiver #2.
‘What does the stoma on the baby's stomach look like? Will the baby feel pain? Now I hope to know the child's condition at any time.’—Caregiver #13.
‘The baby is treated in the NICU. I cannot see the child. I am very worried. I hope healthcare professionals can take more photos or videos of the child so that our whole family can have a look and my family's anxiety can be relieved a little.’—Caregiver #19.
‘The baby has suffered so much; I cannot accompany him. I feel so sorry for him. I hope I can go in and see and hug him, let him know that his mother is always there.’—Caregiver #5
Theme 3: Lack of confidence, anxiety, and helplessness
Lack of care confidence
Neonates with enterostomy generally need stoma closure surgery after about 6 months. Parents should perform the nursing work of enterostomy for a long time after discharge. At this stage, with the approach to discharge, parents worry about their ability to take care of their children and even doubt that they are competent for the role of caregiver.
‘We are confused as to how to do it when we get home. The nurse has told us clearly, but we are still worried when we go back to take care of the baby because it is too difficult for us.’—Caregiver #12.
‘We are really afraid to go come home with that stoma bag attached to the baby. If it does not operate correctly, will the child be infected?’—Caregiver #14.
‘This is our first child. We do not have care experience. Now we must be in a hurry to face this enterostomy care.’—Caregiver #3.
Anxiety comes from multiple role conflict
Parents began to worry and feel pressure about their ability to take care of the baby after returning home and returning to work.
‘After the baby is discharged from the hospital, I need to get back to work. Only my mother and my wife take care of the baby. The baby’s problem is quite difficult, and I am afraid they cannot handle it.’— Caregiver #26.
‘After the baby comes home, we have to do many care tasks, but my mother-in-law has no knowledge and does not understand anything. My husband has to go to work and cannot ask for leave anymore. After giving birth to a child, I am in poor health and feel that I do not have enough energy, and I am so tired!’—Caregiver #24.
Theme 4: Eagerness for professional support
Lack of skill and eagerness for professional support
Home care for children after discharge requires parents to master highly professional nursing skills, such as replacement of the stoma bag, which can be challenging. Owing to care pressure, parents are not fully qualified for the role of caregiver and are eager to receive diversified and continuous professional support.
‘Replacing stoma bags requires excellent technology. When I first changed the stoma bag, it took a long time and the bag still did not stick well. I hope someone could guide me.’—Caregiver #4.
‘It is really difficult. At one time, I changed the stoma bag, but the order of stoma powder and skin protective film was reversed. The bag could not stick. The baby cried loudly, and I felt so stupid.’—Caregiver #7.
‘At one time, there was blood in the baby stoma, and I was so scared. I hope someone could give me more guidance, even by telephone and video.’—Caregiver #10.
‘I really hope that healthcare professionals can do a home visit to supervise what our families have done so far and how the children are recovering and also give me some guidance.’—Caregiver #21.
The heavy burden of care
Caring for neonates with enterostomy requires more energy and financial resources than what is involved with caring for healthy children, placing a heavy care and economic burden on parents and other family.
‘My child's surgery cost a lot of money, and this stoma bag is not cheap. I think the financial burden is heavy.’—Caregiver #23.
‘I do everything for the baby myself. I am really tired, but I feel indebted to him. I just hope he that he gets better soon.’—Caregiver #25
‘My husband works in another city. My mother-in-law is old. In addition to the baby, there are many more things. No one can help me, I am really tired, I also do not want my husband to come back to work, but we need money. My child needs a lot of money for future treatment.’—Caregiver #11
High social pressure and intentional concealment of the disease
Owing to the child's disease, parents may refuse visitors (relatives and friends); they do not want to tell others about their child's disease.
‘My child has not been out since he came home. We are worried that others will know about the child's illness.’—Caregiver #7
‘I told my relatives that the children had health problems and their immunity was low. I asked them not to come home as much as possible.’—Caregiver #3
‘I dare not invite my friends to my house. They may see the bag on the baby's stomach; I am afraid others will know about the child's illness.’—Caregiver #1.
Theme 5: Active adaptation, harvest, and growth
Actively adapt to the role of caregiver
At this stage, parents actively adjust their mentality, gradually adapt to the role of caregivers, and actively find and learn relevant medical knowledge, hoping to provide better care for their children.
‘I gradually gathered information on the nursing knowledge website and learned how to take care of the baby.’—Caregiver #23.
‘At the beginning, I was not good at handling the stoma bag. I went to the nursing clinic of the hospital to learn about it. Now I have a very good technique to change the bag.’—Caregiver #2.
‘I cannot be hurried when taking care of the child, The child will have stoma closure surgery after a few months.’– Caregiver #15.
Harvest growth experience
Parents have gradually changed from anxiety, tension, and lack of confidence to a positive face and gratitude. Many people feel that they have gained self-growth by taking care of children.
‘I am the only child in my family. I do not need to worry about it since I was a child. This time, I feel that I have experienced great ups and downs in my life. My baby has suffered a lot since birth. My parents are old and lack energy. I have to take on family responsibilities.’—Caregiver #18.
‘I do not know how difficult it is to be a parent before I have children, but I really think it is not easy to raise a child when I start taking care of my baby. When I think of my parents' efforts, I really need to be grateful for them.’—Caregiver #8.
‘After this experience, our family became more united. I have become more and more responsible. My knowledge and skills in care are also increasing. I must make my child grow up healthy.’—Caregiver #16.