Palliative care practices for enhancing the daily lives of hospitalized children with life- threatening conditions and their families: A qualitative study of practitioners’ perspectives

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Methods: In 2024, semi-structured interviews were conducted on hospital staff recruited from a university’s pediatric specialty hospital to explore their perspectives on palliative care practices. Qualitative content analysis was performed to summarize the practices and challenges. Results: The participants included eight nurses, two Child Life Specialists, two hospital schoolteachers, and one occupational therapist. The participants had respect for the values and wishes of the children and families during daily interactions. They were also sufficiently flexible to allow the children to enjoy age-appropriate activities despite ward regulations and medical constraints. Although the children experienced difficulties due to limited opportunities to physically see their siblings, their parents provided them with information about their siblings. Conclusions: The participants assisted the children with LTCs and their families in fulfilling their wishes and engaging in age-appropriate activities. They also provided support to the entire families, including their siblings. However, challenges exist owing to time constraints, ward regulations, and medical constraints. Palliative care life-threatening conditions hospitalized children families professionals Background Life-threatening conditions (LTC) range from potentially curable with treatment, to potentially deadly [ 1 ], and more than 20,000 children in Japan are estimated to have LTC [ 2 ]. Although children with LTC and their families wish that they participate in usual childhood activities and live life as normally as possible [ 3 ], many LTC require long-term treatment, particularly in Japan, where prolonged hospitalization of 6 months or more is required. Therefore, the “play” and “learning” of children's rights are not fully protected, which has a significant impact on their later life [ 4 ]. Consequently, even during hospitalization, it is necessary for children to acquire rich life experiences, such as those at home, school, and in other community settings. Pediatric palliative care is defined as holistic care for children with LTC that begins with the disease diagnosis and focuses on improving the child's quality of life (QOL) and family support, as well as alleviating the distress caused by painful physical symptoms and unmet physiological needs [ 1 , 5 ]. The Convention on the Rights of the Child [ 6 ] states that children with mental or physical disabilities should enjoy full and decent lives. Therefore, by guaranteeing the children's rights enabling them to enjoy a “full and decent life,” despite ward rules and restrictions imposed by their medical conditions, their QOL can be improved. Based on previous studies [ 3 , 7 – 10 ] and guidelines [ 11 – 13 ] as well as the Convention on the Rights of the Child, we identified nine elements of a “full and decent life” for children. Of these, four elements (“eating well,” “sleeping well,” “regular elimination,” and “breathing easily”) are ways of alleviating physical distress. The remaining five elements (“playing,” “learning,” “socializing with friends,” “family time,” and “physical engagement”) are usual childhood activities. Regarding the initial four elements that lead to the alleviation of physical distress, a multi-disciplinary team recognized the importance of managing pain, seizures, and infections [ 3 ] despite experiencing difficulties in dealing with the children's symptoms [ 14 ]. Thus, the hospital healthcare providers have a high awareness of the care required for managing the symptoms caused by the disease and the side effects of treatment, and it is believed that their practices through trial and error occur despite difficulties. On the other hand, regarding the remaining five elements, healthcare providers involved in the end of life care of pediatric cancer patients recognize “playing,” “learning,” “family time,” and “life as usual” as important concepts of QOL [ 8 ]. However, specific practices of the staff, including cooperation and collaboration with multiple professionals, as well as experience of difficulties regarding care, are unclear. Therefore, in this study, we focused on the following five elements of “full and decent life” that include aspects of normal activities of children: playing, learning, socializing with friends, spending time with family, and physical engagement. Purpose This study aimed to elucidate the palliative care practices that enhance the daily lives of hospitalized children with LTC and their families, encompassing activities such as playing, learning, socializing with friends, family time, and physical engagement, and identify the challenges occurring within the care setting. Methods Design This was a qualitative study using semi-structured interviews. This design was selected because the aim was to conduct a broad investigation into the practices that ensure the daily lives of hospitalized children with LTCs/families and the difficulties inherent within these practices. Participant recruitment and consent process Staff members who had experience in providing daily care to hospitalized children with a disease classified as an LTC, aged 0–15 years, and with their families willing to provide information about the children's daily care practices and the difficulties encountered by the staff in their daily lives in Japan were included. Participants were not required to have had years of experience or bereavement experience with the patient. From the list of supporters of the Aichi Children's Hospice Project [15] including staff from the hospitals and other healthcare organizations, nursing lecturers at universities, and members of childhood cancer patient association, we identified and obtained consent from the supporters in one university hospital and one pediatric specialty hospital in Prefecture A. We aimed to recruit hospital staff with a high level of awareness of why children should enjoy life to ensure a normal daily life, seeking the cooperation of such staff, knowing that they would be more likely to understand this issue. A university hospital representative selected the participants and distributed a survey request form to the participants. Staff at the pediatric specialty hospital used a poster to request participation in the study on an online bulletin board accessible only to the hospital staff. Those willing to participate provided their contact information via Google Forms at any of the facilities. A date of interview was scheduled with staff who provided their contact details. Informed consent was obtained from all participants. Data collection Interviews were conducted in person or online by the first author using an interview guide (Table 1). First, we asked about their years of experience in their respective professions and in caring for children with LTC and their families. Secondly, we asked about the characteristics of the hospitals and wards to which they belonged. Then, using open-ended questions, we asked about the care practiced by the staff and the difficulties arising in the course of enhancing the daily lives of hospitalized children with LTC and their families. The data were collected between June 2024 and October 2024. Table 1: Interview guide. Palliative care practices enhancing the daily lives of hospitalized children with LTC and their families, and the challenge faced in this context What values have you kept in mind or achieved in your daily practice? In your practice, have you ever collaborated with staff from the same profession? Have you ever worked with staff from other professions in your practice? Have you ever been happy or enjoyed any changes in the child’s reactions or behavior as a result of your practice? Have you ever experienced frustration or difficulty in your daily practice? LTC: life-threatening conditions Ethical approval This study was approved by the Ethics Review Committee for Clinical and Epidemiological Research in Health Sciences, Graduate School of Medicine, Nagoya University (No. 23-121). The information sheet clearly stated that participation in this study was voluntary, that no disadvantages would occur by non-participation, and that consent could be withdrawn even after it was provided. In addition, the information obtained from the interviews was de-identified by removing personal information, and the instructions clearly stated that no personally identifiable information would be included when the research results were published. Data analysis A qualitative content analysis [16] was conducted on the data obtained from the interviews, focusing on the perspectives of hospital staff in their practice and on situations in which they had difficulties in providing care. First, the data obtained from the interviews were transcribed verbatim for each research participant and replaced with textual data, which were then perused to extract data about caring for children with LTC and their families, which were further divided into meaningful units. The themes represented by the sentences were then interpreted by considering the entire context and labelled using condensed codes. The codes were then compared and classified into subcategories based on differences and similarities and further abstracted by the cohesion of each subcategory into categories. In the process of analysis, care was taken to ensure that the meaning of the texts was not lost in the process of condensation and abstraction. Throughout the process of analysis, discussions were held with experts in pediatric nursing and qualitative research, who also supervised the work, to ensure rigor. Results Characteristics of the participants The study included eight nurses, two hospital schoolteachers, two Child Life Specialists (CLS), and one occupational therapist. At the university and pediatric specialty hospitals, the years of work experience of participants were 4–33 (average: 14.6) and 2–28 years (average: 12.9) in caring for pediatric patients with LTC. Besides one nurse who had worked in a pediatric specialty hospital, all staff members were affiliated with a university hospital (Table 2). The included staff were those that had been working with children with severe mental and physical disabilities; oncological or hematological diseases; brain tumors, osteosarcoma, neuroblastoma, and leukemia; congenital heart disease; and other terminal conditions. Responses by hospital staff From the 13 eligible hospital staff members’ responses, 1,133 codes (practices, 838; difficulties, 295); 24 sub-categories; and seven categories were extracted, including data on practices that enhance the daily lives of hospitalized children with LTC and their families (Table 3). Capturing the values and wishes of the children and their families in daily interactions Staff were conscious of the need to first capture the child's and family's thoughts and feelings, as stated ‘ I try to understand what the child wants, desires, or feels, rather than working based on their (staff) own values. ’ They also captured the wishes of the child and family in daily interactions by building relationships through playing and talking about the child's favorite things, as in ‘ I play with the child when I am free, at the end of my working hours, because I can hear various stories from the parents and their thoughts, while I am interacting with the child. ’ Then, after listening to the child's and family's wishes, they thought of ways to fulfil them and consulted with multiple professionals, by saying: ‘ Once I have captured the child's and family's wishes and what they want to do, I mention it to the doctor. ’ ‘ He is always accompanied by his mother, so they are always in the hospital together, but on his father's birthday he wanted to go home for the celebration. But when he could not go home because he had a pending checkup, I asked the doctor if we could change the date for the checkup, which was then adjusted.' ’ (Participant 5, Nurse). However, they found it difficult to engage with the children when they wish to play because of the staff’s busy work schedules. In addition, they experienced difficulties in not being able to spend time deeply engaging with the children and families during working hours and had to engage with them outside working hours. Furthermore, the staff felt conflicted in situations in which they were unable to value what the child wanted and how they felt, because the staff’s priority was to proceed with the treatment even if the children’s daily lives were impaired because of it. ‘ During working hours, the priority is to carry out the necessary treatment without delay. Playing with the children is considered the lowest priority; so, I ended up gathering information by playing with them after working hours.' ’ (Participant 5, Nurse). Respecting the wishes of children and their families regarding age-appropriate activities despite ward regulations and medical constraints The staff members did not take the restrictions for granted, but thought about what they could do within those restrictions, such as playing, learning, socializing with friends, and exercising, to ensure that the child's life activities were appropriate for their developmental stage, as stated: ‘ We allowed the children to participate in events in their rooms regardless of whether their neutrophils were low during anti-cancer treatment .’ They worked together in a multi-disciplinary manner to achieve this goal. In this context, they were conscious of ensuring safety, such as by ‘ Adjusting the environment so that the child can play games with their friends even when the white blood cell count is low due to anti-cancer treatment ’ and ‘ Making the playing together during event exciting and fun, so that the children enjoy the event, and also watching to ensure that they avoid anything dangerous. ’ They also adjusted the treatment and examination times to ensure that graduation and entrance ceremonies at local schools, seasonal events in the ward, and classes in the hospital classroom were not interrupted. ' We have a unit where we touch plants, but it is difficult to do it the same way as that done in local schools. For example, in the first grade, we have a “morning glory observation period” and I show the children an actual plant that I had planted and covered using a plastic, which I brought to the hospital school so they can observe them as much as possible .' (Participant 11, a hospital schoolteacher). ‘ I take the child's temperature a little earlier in the morning so that they can go right to the in-hospital class. During the period for junior high school students’ test, we try to refrain from visiting their rooms. If we have to do a checkup, we have no choice, but if it is possible to shift the checkup, we contact the laboratory and ask them to shift the time, or we try to adjust. ' (Participant 8, Nurse). However, they experienced difficulties with restrictions on out-of-school learning and play for reasons such as infection prevention. Furthermore, they were concerned that they were used to seeing children and families living with restrictions and were less aware of the problems associated with this condition. ‘After working in a hospital for a long time, I became used to seeing the children at the hospital, that I took it for granted. However, I should not forget that this is not the norm, that this environment is not the norm, that the restrictions we put on children and their families are not the norm. I always try to remember that. ' (Participant 2, Nurse). ‘ I really wanted to let them play with more water. But I was afraid of mold in the water. In a multi-disciplinary context, the doctor’s restrictions were always very strict. therefore, if we overdo it, they might develop severe pneumonia as a result. ' (Participant 5, Nurse). Creating an environment where children can do their best during hospitalization Staff worked with children to find ways to encourage them to actively engage in rehabilitation and treatment, such as ‘ When a child indicates that they did not want to do something, we asked them about what they did not want to do and why, and how we could help them. ’ and ‘ We would not force a child who did not want to exercise or was having a hard time doing so, but would find something they would be interested in .’ At times, they also exercised with the child to encourage the child's motor development, as in ‘ Taking a walk together around the ward.’ ’ They also saw the child working hard in rehabilitation and used motivational talk to motivate the child, such as ‘ Talking to the children who had set a daily quota so that they could achieve the quota and maintain their muscle strength .’ Furthermore, information was regularly shared with the multi-disciplinary team on how the children were progressing in rehabilitation and on the assessment of muscle strength. ' Children are instructed to walk during rehabilitation, but the scope of their activities is limited to the wards, so they are asked to go around the unchanging scenery in the wards, which is a type of hardship. I walk with these children as much as I can, as many times as I can, and talk with them back and forth. ' (Participant 6, Nurse). Staff shared the child's and family's thoughts and feelings and discussed how to respond to them in multi-disciplinary conferences, as in ‘ I shared information about the child's and family's true feelings that I picked up while playing with and looking after the child .’ They were also conscious of creating an environment where the child and family would not feel pain and moments where they could change their mood, as in ‘ I try to make the child and family laugh at least once, between going to the bedside and coming back. ’ Furthermore, they were receptive to the stresses and thoughts that were building up in the child, as in ‘ I try to be receptive to the stresses and thoughts that the child cannot explain well in words .’ ' While we are playing or looking after the child, they will sometimes express their true feelings, which we pick up and share at the multi-disciplinary meeting. And from there, we can decide if we should provide more care like this or if we should refer them to a psychiatrist. ' (Participant 3, Nurse). On the other hand, they were conflicted by the lack of time to exercise with the children and the fact that they were restricting the children's activities, as in ‘ Depending on the platelet count, I have told them to move or rest or placed restrictions on them .’ ‘ I wish I could walk with them, but it is not easy to get around to doing that, so I guess the best I can do is talk to them. ’ (Participant 7, Nurse). Maintaining good relationships between the children and their families and valuing the time they can spend together as a family Staff took turns watching over the children, creating time for parents to feel safe when away from their children; for example, ‘ When the parents and children spend a long time together, this can cause stress and make it hard for their mood to improve, so I create opportunities for parents to get away from their children. ’ They also helped to bring parents and children together when the parent-child relationship seemed to be deteriorating, for example, by ‘ Taking over, when parents were having a hard time dealing with the children's anger and verbal abuse .’ In addition, they made time for the parents to vent their worries and feelings and helped reduce their anxiety by talking with them, for example, ‘ I talk to the parents on a daily basis about their health and life ’ and ‘ I ask the mother as much as possible during rehabilitation what kind of stress and worries she is having in her relationship with her child. ’ Furthermore, parents were encouraged to talk to their parents to help reduce their anxiety. ' For children of junior high school age and upper primary school age, I wonder how they are doing, and whether their mothers are thinking about going home instead of staying with them all the time. I always talk with the nurses. ' (Participant 10, CLS). ' Some mothers cry and come to me for advice, but it is hard to say something to cheer them up. There are some children who were here in the past and went through very difficult treatment, but now they are university students and doing well, so I try to encourage them a little bit. ' (Participant 12, a hospital schoolteacher). Staff made adjustments to enable families to spend time together even after restrictions on the age, time, and number of people who could visit, such as ‘ After the COVID-19 pandemic, siblings were able to visit but stay outside the ward, so when they come, we make sure that the children with LTC and siblings can play together in the interview corner. ’ They also adjusted the timing of returning home so that the child and family could spend as much time at home as possible, as in ‘ Children have to go home during treatment to see their families and friends, so I check with the doctor between cancer treatment breaks to discuss whether they can go home. ’ Furthermore, while they had few opportunities to meet their siblings in person, they looked not only after the child in the hospital and the parents accompanying them, but also at their siblings at home, gathering information to support the whole family. ' Many parents say they did not think they could talk to the hospital staff about the children’s siblings. I think it's important for us to be proactive in talking about the siblings, because that is part of their family life and the way their family is, including their siblings. ' (Participant 10, CLS). On the other hand, they felt difficulties because of the restrictions imposed by hospital rules on visits, for example, ‘ Visits are restricted to junior high school students and older, so their siblings are not allowed in the hospital ward until the end of life. ’ They also felt conflicted because they did not know how to follow up with the children’s siblings as they could not see them in person, as in ‘ I cannot do anything for their siblings, I can only listen to what their parents have to say about them .’ ' From our hospital staff's point of view, we can see the child and their parents, but it's hard to see the siblings at home, so we can only imagine. I always think it is very difficult to make them happy or pain free. ' (Participant 6, Nurse). Connecting between children on the ward Staff created an environment where children of the same age could interact with each other, for example, ‘ By sharing a room so that children of the same age could talk naturally’ and ‘ By playing with several children in the playroom so that children could connect with each other. ’ In addition, information about friendships in the ward was shared among staff members. Furthermore, they explained to the children that a friend had died, and supported them afterwards, as in ‘ I see children playing together, so I think we need to talk together properly about the death of a friend .’ ‘ When a child has just been hospitalized, if I know a little bit about a child whose age is close to his age, or a child who likes similar games, I can deliberately talk to them and play with them. ’ (Participant 9, CLS). ‘ They have been playing together, they have been friends, they have been living together, and they have been trying to support each other in the hospital because they thought there was another child in the same situation, and now all of a sudden, she's gone. I think it is strange for her that no one tells her why, or it is like she should not know. Basically, I try to tell them that their friend has died. ' (Participant 10, CLS). On the other hand, they felt difficulties in not being able to create an environment where children of the same age could interact with each other, as in ‘ There are not enough rooms and sometimes it is not possible to create rooms for children of the same sex and the same age ’ and ‘ There is no environment for upper primary and junior high school children to talk and play games. ’ They also felt difficulties in how to tell children that a child they were close to had died and in providing grief care afterwards, as in ‘ It is difficult to explain and respond when children ask about a deceased child ’ and ‘ There is concern about how the children will react when they hear that their friend has died .’ ' If the prognosis is bad and a child has to go home and stay at home for a bit, the other children will ask questions about why this child is going home, and how to respond to that, because some children die. I think it is very difficult to explain and respond to the questions. ' (Participant 8, Nurse). Maintaining links with local schools to ensure a smooth return to the local school after discharge Staff knew about local school friendships by asking children directly or by watching them interact with local school friends online, as in ‘ Asking children about their friendships by noting whether they have parcels or photos from their local school friends on display ’ and ‘ Asking the children who they are playing games with when they are playing games online to find out about their connections with their local school friends. ’ They also shared information between the local school and hospital, and suggested that ‘ At conferences in the local school, I tell the local school teacher that I want the child to consciously create a place to which the child can return ’ and ‘I tell the local school teacher how the child is doing in the hospital class and the local school teacher calls me to ask how the child is doing in the local school. ’ By maintaining links with the local school even when the child was in the hospital, they made conscious efforts to leave a place for the child to return to. ' I talk a lot about local topics to the children and their families, and I try to listen to them a lot to show that I value that part of their lives, that I want to know about that part of their lives, and that I want to support them where I can. ' (Participant 10, CLS). ‘ If there is a chance to talk to the teachers at the local school, I ask them to leave a desk for the child, if possible, deliver class newsletters, and I tell them that letters are always welcome, even though the child will no longer be registered at the local school. ’ (Participant 9, CLS). However, they observed difficulties pertaining to reduced interaction with local friends, as in ‘ Even if they could go home between anti-cancer treatments, there are restrictions on their interactions due to infection control and it is difficult to play with their local friends.’ They also observed difficulties with the different values among the staff in the multi-disciplinary collaboration, including teachers from the local school, as indicated: ‘ Sometimes a teacher from the local school, who is a bit cold, will say that the child is not our child because the school register has been transferred. ’ ' Some schools say, “That child is not our child anymore.” I feel really bad about it, which makes me angry. I think, ‘Why do they say that?’ The children are working hard here to heal, get better, and come back there, so why can you not support them? I get really angry. ’ (Participant 11, a hospital schoolteacher). Building on daily practices in multiple professions to ensure that all staff are aware of the importance of guaranteeing daily lives Staff members were involved in making all other staff members aware of the importance of enhancing the daily lives of children and their families, such as ‘ We value not breaking the rules and not taking big risks so that the whole department can implement practices that guarantee daily life ’ and ‘ We want staff (members) to remember that it is not normal for children to be patient because they are hospitalized and under treatment . ’ They also value multi-disciplinary discussion and collaboration in their practice, and respect the values of each staff member, as in ‘ Even if nurses have different values from each other, I do not think any of them are wrong’ and ‘Each patient's situation is different, so it is important to come together as the multi-disciplinary staff each time to discuss what to do while exchanging opinions. ’ ' What I am conscious of is that it is really necessary to ensure the children’s daily lives, so I am trying to make sure that within the rules, the staff can put this into practice without feeling uncomfortable, and to involve a lot of people to make that happen. I have been working for about 10 years and I have kind of started to see that there are a lot of things that cannot be achieved otherwise. ' (Participant 1, Nurse). On the other hand, they experienced difficulties in getting all staff to practice along the same line, as in ‘ There are differences among staff in how important they think it is to ensure the child’s daily life in practice. ’ Furthermore, they felt that it was difficult to accumulate sufficient experience on practice to enable them to apply their experience to the next child they meet, as in ‘ Staff change regularly, so I find it difficult to apply what I have learnt in one case to the next. ’ Discussion This study focused on the palliative care practices of hospital staff who enhance the daily lives of hospitalized children with LTC and their families, as well as the challenges arising within this context. The results showed that the staff faced conflicts in various situations as they tried to fulfil the wishes of the children and families, and in adjusting their lives to their developmental stage appropriately. However, in the midst of these difficulties, it became clear that the values and wishes of the children and families were valued, and that the practice was carried out in a multi-professional manner to guarantee daily life. In particular, the nurses felt that they did not have time to play or talk with the children. This finding is consistent with reports that nurses who provide day-to-day care for children and their families have insufficient manpower to enable them complete their ward duties and, as a result of being overwhelmed with work, felt that they had no time to support patients or were unable to complete their tasks within their working hours because of the many responsibilities and duties they had to take on [17]. Despite this difficulty, the nurses consciously made time to engage with the children by playing with them and having casual conversations during the limited time they had when they visited the room for temperature checks and medical procedures. Nurses also considered it a part of their job to spend time with children and families to build relationships with them and spend time with them outside of working hours. It is very difficult to build relationships with each child in an LTC facility amid a busy schedule and to implement practices that guarantee children’s daily lives. However, precisely because children with LTC may potentially be curable despite having potentially life-threatening conditions, or they may be dying with no hope of a cure, that it becomes necessary to value the present moment for each child. It is also important to know and respect the wishes and daily lives of the child and family from the time of admission rather than at some point in time. In this study, staff also emphasized their perspectives on activities appropriate to the children's stage of development to ensure that the life experiences of children in the community and at home every day, including playing, learning, and interacting with friends, can be realized in hospitals as much as possible, and that they can smoothly return to life in their local community after discharge. Children with LTC want to meet their friends, play, and attend kindergarten and school [18]. Furthermore, it was particularly important for children to live life to the fullest by being enabled and supported to continue engaging in activities that were important to them and gave their lives meaning [10]. Children value doing activities that are ‘normal’ for them, even when they have a medical condition, and the inability to do activities due to a medical condition can be considered to be isolating, a loss, and a source of great stress for children. In this study, despite the restrictions imposed by the illness and the rules of the wards, the staff did not abandon the restrictions but ensured that the children had time to play and learn in an in-hospital classroom. This practice is considered important for meeting the children's needs and ensuring that the children live life to the fullest and greatest extent. Furthermore, although the staff wanted to support the entire family, including siblings, they found it difficult to know how to follow up with siblings, as they were rarely seen in person. However, despite not being able to see the siblings directly, they practiced asking parents about their siblings and letting them know that the hospital staff also cared about them. Siblings of children with LTC often felt set aside in everyday life as parents and others tended to focus their attention on ill children [19]. In addition, siblings longed to be acknowledged by their parents, family friends, family members, other children, neighbors, acquaintances, or healthcare professionals and to remember to ask how they are doing [19]. Parents accompanying their children should be conscious of looking out for the siblings who are at home as well as the hospitalized children. However, this is difficult in the context of accompanying a child with LTC, and staff need to understand that the parents are conflicted. It is also important to actively discuss siblings on a regular basis to create a relationship in which parents can discuss the siblings when they want to. Limitations and future implications This study is significant because it is the first to examine palliative care practices that enhance the daily lives of children hospitalized with LTC and their families. However, this study had several limitations. First, 12 of the 13 participants belonged to a university hospital, which means that there was a bias regarding the institutions to which the participants belonged. Furthermore, because this university hospital is a base hospital for pediatric cancer, it is possible that many practices on LTC were for children with cancer and their families. Therefore, it is difficult to generalize the results of this study, given the possibility of bias in the environment and content of practice. In the future, it will be necessary to broaden the scope of the study to facilities in different regions to examine practices for children and families with a range of conditions classified as LTC. Second, this study targeted staff who were aware of the daily lives of hospitalized children with LTC and their families. It is difficult to say that the practice is the same in all facilities, as there are likely to be differences in practice depending on the culture of the facility and staff awareness. Therefore, it is also difficult to generalize the results of this study from this perspective. Third, although this study included a multi-professional sample, the participants only covered four professional categories: nurses, hospital schoolteachers, CLSs, and occupational therapists. In addition to these professions, many other professionals support hospitalized children with LTC and their families, including doctors, social workers, physiotherapists, and childcare workers. Therefore, it is necessary to continue to capture the practices of enhancing the daily lives of hospitalized children with LTC and their families by considering the perspective of various professionals. A fourth limitation is that this study only included a survey of staff and not children or families who had had experience of working with the staff; therefore, it was not possible to clarify how the children and families actually perceived the direct and indirect practices of staff. In the future, it will be necessary to examine the practices of staff who enhance the daily lives of hospitalized children with LTC and their families and incorporate their thoughts about these practices through interviews and observation surveys, as well as those of previously hospitalized children and their families. Conclusions In this study, it was found that the staff captured children's and families' values, likes, and wishes through daily interactions, such as playing with children and having casual conversations with them and their families. However, the staff were conflicted because their busy work schedule did not allow them to spend sufficient time talking to these children or families. Despite the various restrictions of hospitalization, staff were flexible in allowing time for activities appropriate to the child's stage of development to allow children in the community and at home to realize their daily life experiences, such as playing, learning, and interaction with friends, which they build up every day, as much as possible. This allows them to smoothly return to their local life after discharge. However, staff members were conflicted by the inability to adjust children’s treatment and examination times, due to the restrictions imposed by ward rules, and the children’s medical conditions. In supporting the siblings, staff working with children with LTC and their families expressed concerns about the siblings but experienced difficulties in engaging with them. In this context, staff members were usually proactive in asking parents how their siblings were doing and gathering information. Therefore, palliative care staff need to be able to understand and respect the values and wishes of children and families from when they are diagnosed with LTC to hospitalization. Abbreviations LTC Life-threatening conditions CLS child life specialist OT occupational therapist Declarations Ethics approval and consent to participate This study was approved by the Ethics Review Committee for Clinical and Epidemiological Research in Health Sciences, Graduate School of Medicine, Nagoya University (No. 23-121). The information sheet clearly stated that participation in this study was voluntary, that no disadvantages would occur by non-participation, and that consent could be withdrawn even after it was provided. In addition, the information obtained from the interviews was de-identified by removing personal information, and the instructions clearly stated that no personally identifiable information would be included when the research results were published. Informed consent was obtained from all participants. Consent for publication Not applicable. Competing interests The authors declare no competing interests. Funding This work was supported by the Shibahara Medical Welfare Foundation. The sponsor had no role in relation to the study design, collection, analysis and interpretation of data, writing of the report and decision to submit the article for publication. Authors’ contributions RS and KN conceived the study. All the authors designed this study. MS, MH, YT, and KN acquired funding. MS and KN recruited participants. RS conducted the interviews and collected and analyzed the data. RS and KN interpreted and analyzed the data. RS drafted the manuscript. KN reviewed and edited the manuscript. TK, TN, and KN supervised the study. All the authors have read and approved the final version of the manuscript. Acknowledgements We would like to express our sincere gratitude to the hospital staff who willingly agreed to participate in this study, and to the facilities for their understanding of the purpose of the study, for arranging the participants, and for conducting the interviews. This study was supported by Shibahara Medical Welfare Foundation. We would like to express our gratitude to this foundation. We would also like to thank the Aichi Children's Hospice Project for their cooperation in recruiting participants. Data statement The raw data supporting the conclusions of this article are available upon request to the authors, without any restriction. Author statement The authors would like to confirm that this manuscript entitled, ‘Palliative care practices for enhancing the daily lives of hospitalized children with life-threatening conditions and their families: A qualitative study of practitioners’ perspectives,’ is an original research project, it has not been submitted to another journal nor published previously. The study design was approved by the appropriate ethics committee. References Chambers L. A guide to children’s palliative care. 4th ed. Year]: [accessed Date Month; 2018. https://www.togetherforshortlives.org.uk/app/uploads/2018/03/TfSL-A-Guide-to-Children’s-Palliative-Care . -5.pdf. Tatara R. Wagakuni no shounikanwakea no genjo to kaigai no joukyo –[Current status of pediatric palliative care in Japan and overseas] (pp. 2–7). In Hosokawa T, Miyashita M, Shima Y editors Hospisu kanwakea hakusho 2017 -. [Hospice and palliative care white paper in 2017]. Tokyo: Seikai-sha (in Japanese). Coombes L, Braybrook D, Roach A, Scott H, Harðardóttir D, Bristowe K, et al. Achieving child-centred care for children and young people with life-limiting and life-threatening conditions—A qualitative interview study. Eur J Pediatr. 2022;181:3739–52. https://doi.org/10.1007/s00431-022-04566-w . Omata T. The present conditions and problem of the support to a childhood cancer patient: mainly on historic process. annual Bull Musashino Univ Inst Hum Sci. 2017;4:17–26. https://mu.repo.nii.ac.jp/records/418 . World Health Organization. Palliative care for children. 2023. https://www.who.int/europe/news-room/fact-sheets/item/palliative-care-for-children United Nations Children’s Fund. Convention on the Rights of the Child. https://www.unicef.org/child-rights-convention/convention-text Foster M, Quaye AA, Whitehead L, Hallström IK. Children’s voices on their participation and best interests during a hospital stay in Australia. J Pediatr Nurs. 2022;63:64–71. https://doi.org/10.1016/j.pedn.2022.01.003 . Nagoya Y, Miyashita M, Shiwaku H. Pediatric cancer patients’ important end-of-life issues, including quality of life: A survey of pediatric oncologists and nurses in Japan. J Palliat Med. 2017;20:487–93. https://doi.org/10.1089/jpm.2016.0242 . Petersen NN, Larsen HB, Pouplier A, Schmidt-Andersen P, Thorsteinsson T, Schmiegelow K, et al. Childhood cancer survivors’ and their parents’ experiences with participation in a physical and social intervention during cancer treatment: A RESPECT study. J Adv Nurs. 2022;78:3806–16. https://doi.org/10.1111/jan.15381 . Scott HM, Coombes L, Braybrook D, Roach A, Harðardóttir D, Bristowe K, et al. Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study. Palliat Med. 2023;37:856–65. https://doi.org/10.1177/02692163231165101 . HPS Japan. Byouki no kodomo kensho sinyaku – [European association for children in hospital CHARTER in Japanese]. Year]: [accessed Date Month; 2016. https://hps-japan.net/wp/wp-content/uploads/2020/08/9ce76c71a3f16f5ce028342501f8a474.pdf . Japanese Society of Pediatric Oncology Nursing. Nursing care guidelines for children with cancer and their families 2018. https://jspon.sakura.ne.jp/download/jspon_guideline/. [accessed Date Month, Year]. Japan Pediatric Society. Iryo ni okeru kodomo kensho – [Children’s charter in healthcare]. Year]: [accessed Date Month; 2022. https://www.jpeds.or.jp/modules/guidelines/index.php?content_id=143 . Rico-Mena P, Güeita-Rodríguez J, Martino-Alba R, Chocarro-Gonzalez L, Sanz-Esteban I, Palacios-Ceña D. Understanding pediatric care within interdisciplinary palliative programs: A qualitative study. BMC Palliat Care. 2023;22:80. https://doi.org/10.1186/s12904-023-01194-5 . Aichi Children’s Hospice project. Sandousha Meibo. (Jun 27, 2023) –[List of Supporters]. 2023. https://www.achp.jp/about/supporter . [accessed Date Month, Year]. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurs Educ Today. 2004;24:105–12. https://doi.org/10.1016/j.nedt.2003.10.001 . [accessed Date Month, Year]. Roach E, Al Omari O, John S, Francis F, Arulappan J, Shakman L, et al. Challenges experienced by nurses in providing pediatric palliative care: An interpretive phenomenological analysis. J Palliat Care. 2023;38:355–63. https://doi.org/10.1177/08258597231173313 . Kittelsen TB, Castor C, Lee A, Kvarme L. Focusing on life rather than illness: The lived experience of children with life-threatening and life-limiting conditions – A qualitative study. Palliat Care Soc Pract. 2024;18:1–17. https://doi.org/10.1177/26323524241301431 . Kittelsen TB, Castor C, Lee A, Kvarme LG, Winger A. What about me?’: Lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition. Int J Qual Stud Health Well-being. 2024;19:2321645. https://doi.org/10.1080/17482631.2024.2321645 . Tables Table 2: Characteristics of the hospital staff. Staff Profession Experience (yrs) Experience in caring for children in LTC (yrs) Hospital affiliation (hospital) Ward affiliation Interview method Interview (minutes) １ Nurse 10 7 University Pediatric medicine Face-to-face 60 ２ Nurse 24 24 University Pediatric medicine Face-to-face 61 ３ Nurse 7 2 University Pediatric medicine Face-to-face 60 ４ Nurse 17 17 University Pediatric medicine Face-to-face 53 ５ Nurse 20 15 University Pediatric surgery Teams 87 ６ Nurse 13 13 Pediatric specialty Neurosurgery Teams 56 ７ Nurse 7 3 University Pediatric medicine Face-to -face 52 ８ Nurse 8 8 University Pediatric medicine Teams 50 ９ CLS 17 17 University Pediatric medicine Face-to-face 75 10 CLS 12 12 University Pediatric surgery, Orthopedic surgery, Neurosurgery, NICU Face-to-face 81 11 Hospital schoolteacher 4 4 University All children Face-to-face 71 12 Hospital schoolteacher 18 18 University All children Face-to-face 51 13 OT 33 28 University All children Teams 64 CLS: child life specialist; NICU: neonatal intensive care unit; OT: occupational therapist Table 3: Qualitative content analyses of hospital staff’s responses. Categories Sub-categories Capturing the values and wishes of the children and their families in daily interactions Capturing the wishes of children and families first, without getting ahead of ourselves in our desire to guarantee the daily lives of children and families Capturing the children and families’ values through play and casual conversations Sharing the children and families’ wishes with a multidisciplinary team and consulting with them to ensure that these wishes are fulfilled When the goal is to achieve a cure of the disease, the priority is to proceed with treatment, even if it causes restrictions and impairs daily life Respecting the wishes of children and their families regarding age-appropriate activities despite ward regulations and medical constraints Ensuring life appropriate activities for each stage of development, without taking for granted ward rules and restrictions due to the medical conditions. Arranging times and locations of treatment to enable participation in local school events and play and learning time on the ward While working with the children, they teach us how to treat them normally and not treat them specially because of their illnesses Creating an environment where children can do their best during hospitalization Working with the children to identify ways to actively engage in rehabilitation Multi-disciplinary sharing of information on how things are progressing with rehabilitation, assessment of muscle strength, and discussion on daily interventions Creating a pain-free environment and time for change of scenery to ensure stability for the children and families Maintaining good relationships between the children and their families and valuing the time they can spend together as a family Allowing time for parents to feel safe away from their children at the hospital Table 3 (continued) Categories Sub-categories Maintaining good relationships between the children and their families and valuing the time they can spend together as a family Bringing parents and children together when the relationship between parents and children seems to be deteriorating. Talking to parents accompanying their children to the hospital to reduce their anxiety. Gathering information on siblings who spend time at home and follow-up of the whole family, including siblings Arrangements to allow families to spend time together despite restrictions imposed by visitation rules Multi-professional coordination of when to go home between treatments Connecting between children on the ward Creating an environment where children of the same age group in the ward can interact with each other Information sharing with multi-disciplinary staff on friendships on the ward to learn about children's relationships Explaining to the child that a friend has died and offering support afterwards Maintaining links with local schools to ensure a smooth return to the local school after discharge Finding out about local friendships by asking the child directly or by watching them interact with local friends online Informing the children about the course of treatment and how to deal with classmates and teachers from the local school, who tell them how the child was before being admitted to the hospital Building on daily practices in multiple professions to ensure that all staff are aware of the importance of guaranteeing daily lives Involvement of all staff in raising awareness of the importance of guaranteeing daily life Respecting the values of each staff member to avoid conflicts between staff with different views Sharing experiences of practices that enhance daily life among staff and applying them to the next child they meet Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8698612","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":585891030,"identity":"28d15241-9573-4b5e-92c6-696cee5a034c","order_by":0,"name":"Riho Sato","email":"data:image/png;base64,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","orcid":"","institution":"Nagoya University Graduate School of Medicine","correspondingAuthor":true,"prefix":"","firstName":"Riho","middleName":"","lastName":"Sato","suffix":""},{"id":585891031,"identity":"299a2860-85d5-40a1-921f-12bc6a2bf8b7","order_by":1,"name":"Taro Kaneko","email":"","orcid":"","institution":"Nagoya University Graduate School of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Taro","middleName":"","lastName":"Kaneko","suffix":""},{"id":585891032,"identity":"a644603b-27e3-469c-bd81-c386425d3c55","order_by":2,"name":"Tomo Nonoyama","email":"","orcid":"","institution":"Nagoya University Graduate School of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Tomo","middleName":"","lastName":"Nonoyama","suffix":""},{"id":585891033,"identity":"e3823558-7e66-4b95-a0a6-4476f18fbf6b","order_by":3,"name":"Miwa Sasaki","email":"","orcid":"","institution":"Nagoya University Hospital","correspondingAuthor":false,"prefix":"","firstName":"Miwa","middleName":"","lastName":"Sasaki","suffix":""},{"id":585891034,"identity":"eb6c1c94-5c95-4a85-befd-0311cba65b0f","order_by":4,"name":"Megumi Hatanaka","email":"","orcid":"","institution":"Aichi Children's Hospice Project","correspondingAuthor":false,"prefix":"","firstName":"Megumi","middleName":"","lastName":"Hatanaka","suffix":""},{"id":585891035,"identity":"83dae5d3-6149-404b-b013-ef38518b58cc","order_by":5,"name":"Yoshiyuki Takahashi","email":"","orcid":"","institution":"Nagoya University Graduate School of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Yoshiyuki","middleName":"","lastName":"Takahashi","suffix":""},{"id":585891036,"identity":"5d5b360f-5865-4a61-aadb-d6dc070af46d","order_by":6,"name":"Kazuteru Niinomi","email":"","orcid":"","institution":"Nagoya University Graduate School of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Kazuteru","middleName":"","lastName":"Niinomi","suffix":""}],"badges":[],"createdAt":"2026-01-26 09:24:03","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8698612/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8698612/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":102295277,"identity":"0540ff13-7273-4910-873d-7f74d18281fc","added_by":"auto","created_at":"2026-02-10 10:10:30","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1011634,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8698612/v1/a2cd93fb-66a4-4c7f-bec8-4853446fe68f.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Palliative care practices for enhancing the daily lives of hospitalized children with life- threatening conditions and their families: A qualitative study of practitioners’ perspectives","fulltext":[{"header":"Background","content":"\u003cp\u003eLife-threatening conditions (LTC) range from potentially curable with treatment, to potentially deadly [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e], and more than 20,000 children in Japan are estimated to have LTC [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. Although children with LTC and their families wish that they participate in usual childhood activities and live life as normally as possible [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e], many LTC require long-term treatment, particularly in Japan, where prolonged hospitalization of 6 months or more is required. Therefore, the “play” and “learning” of children's rights are not fully protected, which has a significant impact on their later life [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Consequently, even during hospitalization, it is necessary for children to acquire rich life experiences, such as those at home, school, and in other community settings. Pediatric palliative care is defined as holistic care for children with LTC that begins with the disease diagnosis and focuses on improving the child's quality of life (QOL) and family support, as well as alleviating the distress caused by painful physical symptoms and unmet physiological needs [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. The Convention on the Rights of the Child [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e] states that children with mental or physical disabilities should enjoy full and decent lives. Therefore, by guaranteeing the children's rights enabling them to enjoy a “full and decent life,” despite ward rules and restrictions imposed by their medical conditions, their QOL can be improved.\u003c/p\u003e \u003cp\u003eBased on previous studies [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan additionalcitationids=\"CR8 CR9\" citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e–\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e] and guidelines [\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e–\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e] as well as the Convention on the Rights of the Child, we identified nine elements of a “full and decent life” for children. Of these, four elements (“eating well,” “sleeping well,” “regular elimination,” and “breathing easily”) are ways of alleviating physical distress. The remaining five elements (“playing,” “learning,” “socializing with friends,” “family time,” and “physical engagement”) are usual childhood activities. Regarding the initial four elements that lead to the alleviation of physical distress, a multi-disciplinary team recognized the importance of managing pain, seizures, and infections [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e] despite experiencing difficulties in dealing with the children's symptoms [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Thus, the hospital healthcare providers have a high awareness of the care required for managing the symptoms caused by the disease and the side effects of treatment, and it is believed that their practices through trial and error occur despite difficulties. On the other hand, regarding the remaining five elements, healthcare providers involved in the end of life care of pediatric cancer patients recognize “playing,” “learning,” “family time,” and “life as usual” as important concepts of QOL [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. However, specific practices of the staff, including cooperation and collaboration with multiple professionals, as well as experience of difficulties regarding care, are unclear. Therefore, in this study, we focused on the following five elements of “full and decent life” that include aspects of normal activities of children: playing, learning, socializing with friends, spending time with family, and physical engagement.\u003c/p\u003e\n\u003ch3\u003ePurpose\u003c/h3\u003e\n\u003cp\u003eThis study aimed to elucidate the palliative care practices that enhance the daily lives of hospitalized children with LTC and their families, encompassing activities such as playing, learning, socializing with friends, family time, and physical engagement, and identify the challenges occurring within the care setting.\u003c/p\u003e "},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eDesign\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis was a qualitative study using semi-structured interviews. This design was selected because the aim was to conduct a broad investigation into the practices that ensure the daily lives of hospitalized children with LTCs/families and the difficulties inherent within these practices.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eParticipant recruitment and consent process\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStaff members who had experience in providing daily care to hospitalized children with a disease classified as an LTC, aged 0\u0026ndash;15 years, and with their families willing to provide information about the children\u0026apos;s daily care practices and the difficulties encountered by the staff in their daily lives in Japan were included. Participants were not required to have had years of experience or bereavement experience with the patient.\u003c/p\u003e\n\u003cp\u003eFrom the list of supporters of the Aichi Children\u0026apos;s Hospice Project [15] including staff from the hospitals and other healthcare organizations, nursing lecturers at universities, and members of childhood cancer patient association, we identified and obtained consent from the supporters in one university hospital and one pediatric specialty hospital in Prefecture A. We aimed to recruit hospital staff with a high level of awareness of why children should enjoy life to ensure a normal daily life, seeking the cooperation of such staff, knowing that they would be more likely to understand this issue. A university hospital representative selected the participants and distributed a survey request form to the participants. Staff at the pediatric specialty hospital used a poster to request participation in the study on an online bulletin board accessible only to the hospital staff. Those willing to participate provided their contact information via Google Forms at any of the facilities. A date of interview was scheduled with staff who provided their contact details. Informed consent was obtained from all participants.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData collection\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eInterviews were conducted in person or online by the first author using an interview guide (Table 1). First, we asked about their years of experience in their respective professions and in caring for children with LTC and their families. Secondly, we asked about the characteristics of the hospitals and wards to which they belonged. Then, using open-ended questions, we asked about the care practiced by the staff and the difficulties arising in the course of enhancing the daily lives of hospitalized children with LTC and their families. The data were collected between June 2024 and October 2024.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1: Interview guide.\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 100%;\"\u003e\n \u003cp\u003ePalliative care practices enhancing the daily lives of hospitalized children with LTC and their families, and the challenge faced in this context\u003c/p\u003e\n \u003cp\u003eWhat values have you kept in mind or achieved in your daily practice?\u003c/p\u003e\n \u003cp\u003eIn your practice, have you ever collaborated with staff from the same profession?\u003c/p\u003e\n \u003cp\u003eHave you ever worked with staff from other professions in your practice?\u003c/p\u003e\n \u003cp\u003eHave you ever been happy or enjoyed any changes in the child\u0026rsquo;s reactions or behavior as a result of your practice?\u003c/p\u003e\n \u003cp\u003eHave you ever experienced frustration or difficulty in your daily practice?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eLTC: life-threatening conditions\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthical approval\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was approved by the Ethics Review Committee for Clinical and Epidemiological Research in Health Sciences, Graduate School of Medicine, Nagoya University (No. 23-121). The information sheet clearly stated that participation in this study was voluntary, that no disadvantages would occur by non-participation, and that consent could be withdrawn even after it was provided. In addition, the information obtained from the interviews was de-identified by removing personal information, and the instructions clearly stated that no personally identifiable information would be included when the research results were published.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA qualitative content\u0026nbsp;analysis [16]\u0026nbsp;was conducted on the data obtained from the interviews, focusing on the perspectives of hospital staff in their practice and on situations in which they had difficulties in providing care. First, the data obtained from the interviews were transcribed verbatim for each research participant and replaced with textual data, which were then perused to extract data about caring for children with LTC and their families, which were further divided into meaningful units. The themes represented by the sentences were then interpreted by considering the entire context and labelled using condensed codes. The codes were then compared and classified into subcategories based on differences and similarities and further abstracted by the cohesion of each subcategory into categories.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn the process of analysis, care was taken to ensure that the meaning of the texts was not lost in the process of condensation and abstraction. Throughout the process of analysis, discussions were held with experts in pediatric nursing and qualitative research, who also supervised the work, to ensure rigor.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eCharacteristics of the participants\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study included eight nurses, two hospital schoolteachers, two Child Life Specialists (CLS), and one occupational therapist. At the university and pediatric specialty hospitals, the years of work experience of participants were 4\u0026ndash;33 (average: 14.6) and 2\u0026ndash;28 years (average: 12.9) in caring for pediatric patients with LTC. Besides one nurse who had worked in a pediatric specialty hospital, all staff members were affiliated with a university hospital (Table 2). The included staff were those that had been working with children with severe mental and physical disabilities; oncological or hematological diseases; brain tumors, osteosarcoma, neuroblastoma, and leukemia; congenital heart disease; and other terminal conditions.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResponses by hospital staff\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFrom the 13 eligible hospital staff members\u0026rsquo; responses, 1,133 codes (practices, 838; difficulties, 295); 24 sub-categories; and seven categories were extracted, including data on practices that enhance the daily lives of hospitalized children with LTC and their families (Table 3).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCapturing the values and wishes of the children and their families in daily interactions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStaff were conscious of the need to first capture the child\u0026apos;s and family\u0026apos;s thoughts and feelings, as stated \u0026lsquo;\u003cem\u003eI try to understand what the child wants, desires, or feels, rather than working based on their (staff) own values.\u003c/em\u003e\u0026rsquo; They also captured the wishes of the child and family in daily interactions by building relationships through playing and talking about the child\u0026apos;s favorite things, as in \u0026lsquo;\u003cem\u003eI play with the child when I am free, at the end of my working hours, because I can hear various stories from the parents and their thoughts, while I am interacting with the child.\u003c/em\u003e\u0026rsquo; Then, after listening to the child\u0026apos;s and family\u0026apos;s wishes, they thought of ways to fulfil them and consulted with multiple professionals, by saying: \u0026lsquo;\u003cem\u003eOnce I have captured the child\u0026apos;s and family\u0026apos;s wishes and what they want to do, I mention it to the doctor.\u003c/em\u003e\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eHe is always accompanied by his mother, so they are always in the hospital together, but on his father\u0026apos;s birthday he wanted to go home for the celebration. But when he could not go home because he had a pending checkup, I asked the doctor if we could change the date for the checkup, which was then adjusted.\u0026apos;\u003c/em\u003e\u0026rsquo; (Participant 5, Nurse).\u003c/p\u003e\n\u003cp\u003eHowever, they found it difficult to engage with the children when they wish to play because of the staff\u0026rsquo;s busy work schedules. In addition, they experienced difficulties in not being able to spend time deeply engaging with the children and families during working hours and had to engage with them outside working hours. Furthermore, the staff felt conflicted in situations in which they were unable to value what the child wanted and how they felt, because the staff\u0026rsquo;s priority was to proceed with the treatment even if the children\u0026rsquo;s daily lives were impaired because of it.\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eDuring working hours, the priority is to carry out the necessary treatment without delay. Playing with the children is considered the lowest priority; so, I ended up gathering information by playing with them after working hours.\u0026apos;\u003c/em\u003e\u0026rsquo; (Participant 5, Nurse).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eRespecting the wishes of children and their families regarding age-appropriate activities despite ward regulations and medical constraints\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe staff members did not take the restrictions for granted, but thought about what they could do within those restrictions, such as playing, learning, socializing with friends, and exercising, to ensure that the child\u0026apos;s life activities were appropriate for their developmental stage, as stated: \u0026lsquo;\u003cem\u003eWe allowed the children to participate in events in their rooms regardless of whether their neutrophils were low during anti-cancer treatment\u003c/em\u003e.\u0026rsquo; They worked together in a multi-disciplinary manner to achieve this goal. In this context, they were conscious of ensuring safety, such as by \u0026lsquo;\u003cem\u003eAdjusting the environment so that the child can play games with their friends even when the white blood cell count is low due to anti-cancer treatment\u003c/em\u003e\u0026rsquo; and \u0026lsquo;\u003cem\u003eMaking the playing together during event exciting and fun, so that the children enjoy the event, and also watching to ensure that they avoid anything dangerous.\u003c/em\u003e \u0026rsquo; They also adjusted the treatment and examination times to ensure that graduation and entrance ceremonies at local schools, seasonal events in the ward, and classes in the hospital classroom were not interrupted.\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eWe have a unit where we touch plants, but it is difficult to do it the same way as that done in local schools. For example, in the first grade, we have a \u0026ldquo;morning glory observation period\u0026rdquo; and I show the children an actual plant that I had planted and covered using a plastic, which I brought to the hospital school so they can observe them as much as possible\u003c/em\u003e.\u0026apos; (Participant 11, a hospital schoolteacher).\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eI\u003c/em\u003e \u003cem\u003etake the child\u0026apos;s temperature a little earlier in the morning so that they can go right to the in-hospital class. During the period for junior high school students\u0026rsquo; test, we try to refrain from visiting their rooms. If we have to do a checkup, we have no choice, but if it is possible to shift the checkup, we contact the laboratory and ask them to shift the time, or we try to adjust.\u003c/em\u003e\u0026apos; (Participant 8, Nurse).\u003c/p\u003e\n\u003cp\u003eHowever, they experienced difficulties with restrictions on out-of-school learning and play for reasons such as infection prevention. Furthermore, they were concerned that they were used to seeing children and families living with restrictions and were less aware of the problems associated with this condition.\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;After\u003cem\u003e\u0026nbsp;working in a hospital for a long time, I became used to seeing the children at the hospital, that I took it for granted. However, I should not forget that this is not the norm, that this environment is not the norm, that the restrictions we put on children and their families are not the norm. I always try to remember that.\u003c/em\u003e\u0026apos; (Participant 2, Nurse).\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eI really wanted to let them play with more water. But I was afraid of mold in the water. In a multi-disciplinary context, the doctor\u0026rsquo;s restrictions were always very strict. therefore, if we overdo it, they might develop severe pneumonia as a result.\u003c/em\u003e\u0026apos; (Participant 5, Nurse).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCreating an environment where children can do their best during hospitalization\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStaff worked with children to find ways to encourage them to actively engage in rehabilitation and treatment, such as \u0026lsquo;\u003cem\u003eWhen a child indicates that they did not want to do something, we asked them about what they did not want to do and why, and how we could help them.\u003c/em\u003e\u0026rsquo; and \u0026lsquo;\u003cem\u003eWe would not force a child who did not want to exercise or was having a hard time doing so, but would find something they would be interested in\u003c/em\u003e.\u0026rsquo; At times, they also exercised with the child to encourage the child\u0026apos;s motor development, as in \u0026lsquo;\u003cem\u003eTaking a walk together around the ward.\u0026rsquo;\u003c/em\u003e\u0026rsquo; They also saw the child working hard in rehabilitation and used motivational talk to motivate the child, such as \u0026lsquo;\u003cem\u003eTalking to the children who had set a daily quota so that they could achieve the quota and maintain their muscle strength\u003c/em\u003e.\u0026rsquo; Furthermore, information was regularly shared with the multi-disciplinary team on how the children were progressing in rehabilitation and on the assessment of muscle strength.\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eChildren are instructed to walk during rehabilitation, but the scope of their activities is limited to the wards, so they are asked to go around the unchanging scenery in the wards, which is a type of hardship. I walk with these children as much as I can, as many times as I can, and talk with them back and forth.\u003c/em\u003e\u0026apos; (Participant 6, Nurse).\u003c/p\u003e\n\u003cp\u003eStaff shared the child\u0026apos;s and family\u0026apos;s thoughts and feelings and discussed how to respond to them in multi-disciplinary conferences, as in \u0026lsquo;\u003cem\u003eI shared information about the child\u0026apos;s and family\u0026apos;s true feelings that I picked up while playing with and looking after the child\u003c/em\u003e.\u0026rsquo;\u0026nbsp;They were also conscious of creating an environment where the child and family would not feel pain and moments where they could change their mood, as in \u0026lsquo;\u003cem\u003eI try to make the child and family laugh at least once, between going to the bedside and coming back.\u003c/em\u003e\u0026rsquo;\u0026nbsp;Furthermore, they were receptive to the stresses and thoughts that were building up in the child, as in \u0026lsquo;\u003cem\u003eI try to be receptive to the stresses and thoughts that the child cannot explain well in words\u003c/em\u003e.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eWhile we are playing or looking after the child, they will sometimes express their true feelings, which we pick up and share at the multi-disciplinary meeting. And from there, we can decide if we should provide more care like this or if we should refer them to a psychiatrist.\u003c/em\u003e\u0026apos; (Participant 3, Nurse).\u003c/p\u003e\n\u003cp\u003eOn the other hand, they were conflicted by the lack of time to exercise with the children and the fact that they were restricting the children\u0026apos;s activities, as in \u0026lsquo;\u003cem\u003eDepending on the platelet count, I have told them to move or rest or placed restrictions on them\u003c/em\u003e.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eI wish I could walk with them, but it is not easy to get around to doing that, so I guess the best I can do is talk to them.\u003c/em\u003e\u0026rsquo; (Participant 7, Nurse).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMaintaining good relationships between the children and their families and valuing the time they can spend together as a family\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStaff took turns watching over the children, creating time for parents to feel safe when away from their children; for example, \u0026lsquo;\u003cem\u003eWhen the parents and children spend a long time together, this can cause stress and make it hard for their mood to improve, so I create opportunities for parents to get away from their children.\u003c/em\u003e\u0026rsquo; They also helped to bring parents and children together when the parent-child relationship seemed to be deteriorating, for example, by \u0026lsquo;\u003cem\u003eTaking over, when parents were having a hard time dealing with the children\u0026apos;s anger and verbal abuse\u003c/em\u003e.\u0026rsquo;\u0026nbsp;In addition, they made time for the parents to vent their worries and feelings and helped reduce their anxiety by talking with them, for example, \u0026lsquo;\u003cem\u003eI talk to the parents on a daily basis about their health and life\u003c/em\u003e\u0026rsquo; and \u0026lsquo;\u003cem\u003eI ask the mother as much as possible during rehabilitation what kind of stress and worries she is having in her relationship with her child.\u0026nbsp;\u003c/em\u003e\u0026rsquo; Furthermore, parents were encouraged to talk to their parents to help reduce their anxiety.\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eFor children of junior high school age and upper primary school age, I wonder how they are doing, and whether their mothers are thinking about going home instead of staying with them all the time. I always talk with the nurses.\u003c/em\u003e\u0026apos; (Participant 10, CLS).\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eSome mothers cry and come to me for advice, but it is hard to say something to cheer them up. There are some children who were here in the past and went through very difficult treatment, but now they are university students and doing well, so I try to encourage them a little bit.\u003c/em\u003e\u0026apos; (Participant 12, a hospital schoolteacher).\u003c/p\u003e\n\u003cp\u003eStaff made adjustments to enable families to spend time together even after restrictions on the age, time, and number of people who could visit, such as \u0026lsquo;\u003cem\u003eAfter the COVID-19 pandemic, siblings were able to visit but stay outside the ward, so when they come, we make sure that the children with LTC and siblings can play together in the interview corner.\u003c/em\u003e \u0026rsquo; They also adjusted the timing of returning home so that the child and family could spend as much time at home as possible, as in \u0026lsquo;\u003cem\u003eChildren have to go home during treatment to see their families and friends, so I check with the doctor between cancer treatment breaks to discuss whether they can go home.\u003c/em\u003e \u0026rsquo; Furthermore, while they had few opportunities to meet their siblings in person, they looked not only after the child in the hospital and the parents accompanying them, but also at their siblings at home, gathering information to support the whole family.\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eMany parents say they did not think they could talk to the hospital staff about the children\u0026rsquo;s siblings. I think it\u0026apos;s important for us to be proactive in talking about the siblings, because that is part of their family life and the way their family is, including their siblings.\u003c/em\u003e\u0026apos; (Participant 10, CLS).\u003c/p\u003e\n\u003cp\u003eOn the other hand, they felt difficulties because of the restrictions imposed by hospital rules on visits, for example, \u0026lsquo;\u003cem\u003eVisits are restricted to junior high school students and older, so their siblings are not allowed in the hospital ward until the end of life.\u003c/em\u003e \u0026rsquo; They also felt conflicted because they did not know how to follow up with the children\u0026rsquo;s siblings as they could not see them in person, as in \u0026lsquo;\u003cem\u003eI cannot do anything for their siblings, I can only listen to what their parents have to say about them\u003c/em\u003e.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eFrom our hospital staff\u0026apos;s point of view, we can see the child and their parents, but it\u0026apos;s hard to see the siblings at home, so we can only imagine. I always think it is very difficult to make them happy or pain free.\u003c/em\u003e\u0026apos; (Participant 6, Nurse).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConnecting between children on the ward\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStaff created an environment where children of the same age could interact with each other, for example, \u0026lsquo;\u003cem\u003eBy sharing a room so that children of the same age could talk naturally\u0026rsquo;\u003c/em\u003e and \u0026lsquo;\u003cem\u003eBy playing with several children in the playroom so that children could connect with each other.\u003c/em\u003e \u0026rsquo; In addition, information about friendships in the ward was shared among staff members. Furthermore, they explained to the children that a friend had died, and supported them afterwards, as in \u0026lsquo;\u003cem\u003eI see children playing together, so I think we need to talk together properly about the death of a friend\u003c/em\u003e.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eWhen a child has just been hospitalized, if I know a little bit about a child whose age is close to his age, or a child who likes similar games, I can deliberately talk to them and play with them.\u003c/em\u003e\u0026rsquo; (Participant 9, CLS).\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eThey have been playing together, they have been friends, they have been living together, and they have been trying to support each other in the hospital because they thought there was another child in the same situation, and now all of a sudden, she\u0026apos;s gone. I think it is strange for her that no one tells her why, or it is like she should not know. Basically, I try to tell them that their friend has died.\u003c/em\u003e\u0026apos; (Participant 10, CLS).\u003c/p\u003e\n\u003cp\u003eOn the other hand, they felt difficulties in not being able to create an environment where children of the same age could interact with each other, as in \u0026lsquo;\u003cem\u003eThere are not enough rooms and sometimes it is not possible to create rooms for children of the same sex and the same age\u003c/em\u003e\u0026rsquo; and \u0026lsquo;\u003cem\u003eThere is no environment for upper primary and junior high school children to talk and play games.\u003c/em\u003e \u0026rsquo; They also felt difficulties in how to tell children that a child they were close to had died and in providing grief care afterwards, as in \u0026lsquo;\u003cem\u003eIt is difficult to explain and respond when children ask about a deceased child\u003c/em\u003e\u0026rsquo; and \u0026lsquo;\u003cem\u003eThere is concern about how the children will react when they hear that their friend has died\u003c/em\u003e.\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eIf the prognosis is bad and a child has to go home and stay at home for a bit, the other children will ask questions about why this child is going home, and how to respond to that, because some children die. I think it is very difficult to explain and respond to the questions.\u003c/em\u003e\u0026apos; (Participant 8, Nurse).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMaintaining links with local schools to ensure a smooth return to the local school after discharge\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStaff knew about local school friendships by asking children directly or by watching them interact with local school friends online, as in \u0026lsquo;\u003cem\u003eAsking children about their friendships by noting whether they have parcels or photos from their local school friends on display\u003c/em\u003e\u0026rsquo; and \u0026lsquo;\u003cem\u003eAsking the children who they are playing games with when they are playing games online to find out about their connections with their local school friends.\u003c/em\u003e \u0026rsquo; They also shared information between the local school and hospital, and suggested that \u0026lsquo;\u003cem\u003eAt conferences in the local school, I tell the local school teacher that I want the child to consciously create a place to which the child can return\u003c/em\u003e\u0026rsquo; and \u003cem\u003e\u0026lsquo;I tell the local school teacher how the child is doing in the hospital class and the local school teacher calls me to ask how the child is doing in the local school.\u003c/em\u003e \u0026rsquo; By maintaining links with the local school even when the child was in the hospital, they made conscious efforts to leave a place for the child to return to.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eI talk a lot about local topics to the children and their families, and I try to listen to them a lot to show that I value that part of their lives, that I want to know about that part of their lives, and that I want to support them where I can.\u003c/em\u003e \u0026apos; (Participant 10, CLS).\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eIf there is a chance to talk to the teachers at the local school, I ask them to leave a desk for the child, if possible, deliver class newsletters, and I tell them that letters are always welcome, even though the child will no longer be registered at the local school.\u003c/em\u003e\u0026rsquo; (Participant 9, CLS).\u003c/p\u003e\n\u003cp\u003eHowever, they observed difficulties pertaining to reduced interaction with local friends, as in \u0026lsquo;\u003cem\u003eEven if they could go home between anti-cancer treatments, there are restrictions on their interactions due to infection control and it is difficult to play with their local friends.\u0026rsquo;\u003c/em\u003e They also observed difficulties with the different values among the staff in the multi-disciplinary collaboration, including teachers from the local school, as indicated: \u0026lsquo;\u003cem\u003eSometimes a teacher from the local school, who is a bit cold, will say that the child is not our child because the school register has been transferred.\u003c/em\u003e\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eSome schools say, \u0026ldquo;That child is not our child anymore.\u0026rdquo; I feel really bad about it, which makes me angry. I think, \u0026lsquo;Why do they say that?\u0026rsquo; The children are working hard here to heal, get better, and come back there, so why can you not support them? I get really angry.\u003c/em\u003e\u0026rsquo; (Participant 11, a hospital schoolteacher).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eBuilding on daily practices in multiple professions to ensure that all staff are aware of the importance of guaranteeing daily lives\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStaff members were involved in making all other staff members aware of the importance of enhancing the daily lives of children and their families, such as \u0026lsquo;\u003cem\u003eWe value not breaking the rules and not taking big risks so that the whole department can implement practices that guarantee daily life\u003c/em\u003e\u0026rsquo; and \u0026lsquo;\u003cem\u003eWe want staff (members) to remember that it is not normal for children to be patient because they are hospitalized and under treatment\u003c/em\u003e. \u0026rsquo;\u0026nbsp;They also value multi-disciplinary discussion and collaboration in their practice, and respect the values of each staff member, as in \u0026lsquo;\u003cem\u003eEven if nurses have different values from each other, I do not think any of them are wrong\u0026rsquo; and \u0026lsquo;Each patient\u0026apos;s situation is different, so it is important to come together as the multi-disciplinary staff each time to discuss what to do while exchanging opinions.\u003c/em\u003e\u0026rsquo;\u003c/p\u003e\n\u003cp\u003e\u0026apos;\u003cem\u003eWhat I am conscious of is that it is really necessary to ensure the children\u0026rsquo;s daily lives, so I am trying to make sure that within the rules, the staff can put this into practice without feeling uncomfortable, and to involve a lot of people to make that happen. I have been working for about 10 years and I have kind of started to see that there are a lot of things that cannot be achieved otherwise.\u003c/em\u003e\u0026apos; (Participant 1, Nurse).\u003c/p\u003e\n\u003cp\u003eOn the other hand, they experienced difficulties in getting all staff to practice along the same line, as in \u0026lsquo;\u003cem\u003eThere are differences among staff in how important they think it is to ensure the child\u0026rsquo;s daily life in practice.\u0026nbsp;\u003c/em\u003e\u0026rsquo; Furthermore, they felt that it was difficult to accumulate sufficient experience on practice to enable them to apply their experience to the next child they meet, as in \u0026lsquo;\u003cem\u003eStaff change regularly, so I find it difficult to apply what I have learnt in one case to the next.\u003c/em\u003e\u0026rsquo;\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study focused on the palliative care practices of hospital staff who enhance the daily lives of hospitalized children with LTC and their families, as well as the challenges arising within this context.\u0026nbsp;The results showed that the staff faced conflicts in various situations as they tried to fulfil the wishes of the children and families, and in adjusting their lives to their developmental stage appropriately. However, in the midst of these difficulties, it became clear that the values and wishes of the children and families were valued, and that the practice was carried out in a multi-professional manner to guarantee daily life.\u003c/p\u003e\n\u003cp\u003eIn particular, the nurses felt that they did not have time to play or talk with the children. This finding is consistent with reports that nurses who provide day-to-day care for children and their families have insufficient manpower to enable them complete their ward duties and, as a result of being overwhelmed with work, felt that they had no time to support patients or were unable to complete their tasks within their working hours because of the many responsibilities and duties they had to take on [17].\u0026nbsp;Despite this difficulty, the nurses consciously made time to engage with the children by playing with them and having casual conversations during the limited time they had when they visited the room for temperature checks and medical procedures. Nurses also considered it a part of their job to spend time with children and families to build relationships with them and spend time with them outside of working hours.\u0026nbsp;It is very difficult to build relationships with each child in an LTC facility amid a busy schedule and to implement practices that guarantee children\u0026rsquo;s daily lives.\u0026nbsp;However, precisely because children with LTC may potentially be curable despite having potentially life-threatening conditions, or they may be dying with no hope of a cure, that it becomes necessary to value the present moment for each child.\u0026nbsp;It\u0026nbsp;is\u0026nbsp;also important to know and respect the wishes and daily lives of the child and family from the time of admission rather than at some point in time.\u003c/p\u003e\n\u003cp\u003eIn this study, staff also emphasized their perspectives on activities appropriate to the children\u0026apos;s stage of development to ensure that the life experiences of children in the community and at home every day, including playing, learning, and interacting with friends, can be realized in hospitals as much as possible, and that they can smoothly return to life in their local community after discharge. Children with LTC want to meet their friends, play, and attend kindergarten and school [18]. Furthermore, it was particularly important for children to live life to the fullest by being enabled and supported to continue engaging in activities that were important to them and gave their lives meaning [10]. Children value doing activities that are \u0026lsquo;normal\u0026rsquo; for them, even when they have a medical condition, and the inability to do activities due to a medical condition can be considered to be isolating, a loss, and a source of great stress for children. In this study, despite the restrictions imposed by the illness and the rules of the wards, the staff did not abandon the restrictions but ensured that the children had time to play and learn in an in-hospital classroom.\u0026nbsp;This practice is considered important for meeting the children\u0026apos;s needs and ensuring that the children live life to the fullest and greatest extent.\u003c/p\u003e\n\u003cp\u003eFurthermore, although the staff wanted to support the entire family, including siblings, they found it difficult to know how to follow up with siblings, as they were rarely seen in person. However, despite not being able to see the siblings directly, they practiced asking parents about their siblings and letting them know that the hospital staff also cared about them. Siblings of children with LTC often felt set aside in everyday life as parents and others tended to focus their attention on ill children [19]. In addition, siblings longed to be acknowledged by their parents, family friends, family members, other children, neighbors, acquaintances, or healthcare professionals and to remember to ask how they are doing [19]. Parents accompanying their children should be conscious of looking out for the siblings who are at home as well as the hospitalized children. However, this is difficult in the context of accompanying a child with LTC, and staff need to understand that the parents are conflicted. It is also important to actively discuss siblings on a regular basis to create a relationship in which parents can discuss the siblings when they want to.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLimitations and future implications\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study is significant because it is the first to examine palliative care practices that enhance the daily lives of children hospitalized with LTC and their families. However, this study had several limitations.\u003c/p\u003e\n\u003cp\u003eFirst, 12 of the 13 participants belonged to a university hospital, which means that there was a bias regarding the institutions to which the participants belonged.\u0026nbsp;Furthermore, because this university hospital is a base hospital for pediatric cancer, it is possible that many practices on LTC were for children with cancer and their families.\u0026nbsp;Therefore, it is difficult to generalize the results of this study, given the possibility of bias in the environment and content of practice. In the future, it will be necessary to broaden the scope of the study to facilities in different regions to examine practices for children and families with a range of conditions classified as LTC.\u003c/p\u003e\n\u003cp\u003eSecond, this study targeted staff who were aware of the daily lives of hospitalized children with LTC and their families. It is difficult to say that the practice is the same in all facilities, as there are likely to be differences in practice depending on the culture of the facility and staff awareness.\u0026nbsp;Therefore, it is also difficult to generalize the results of this study from this perspective.\u003c/p\u003e\n\u003cp\u003eThird, although this study included a multi-professional sample, the participants only covered four professional categories: nurses, hospital schoolteachers, CLSs, and occupational therapists.\u0026nbsp;In addition to these professions, many other professionals support hospitalized children with LTC and their families, including doctors, social workers, physiotherapists, and childcare workers.\u0026nbsp;Therefore, it is necessary to continue to capture the practices of enhancing the daily lives of hospitalized children with LTC and their families by considering the perspective of various professionals.\u003c/p\u003e\n\u003cp\u003eA fourth limitation is that this study only included a survey of staff and not children or families who had had experience of working with the staff; therefore, it was not possible to clarify how the children and families actually perceived the direct and indirect practices of staff. In the future, it will be necessary to examine the practices of staff who enhance the daily lives of hospitalized children with LTC and their families and incorporate their thoughts about these practices through interviews and observation surveys, as well as those of previously hospitalized children and their families.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eIn this study, it was found that the staff captured children's and families' values, likes, and wishes through daily interactions, such as playing with children and having casual conversations with them and their families. However, the staff were conflicted because their busy work schedule did not allow them to spend sufficient time talking to these children or families. Despite the various restrictions of hospitalization, staff were flexible in allowing time for activities appropriate to the child's stage of development to allow children in the community and at home to realize their daily life experiences, such as playing, learning, and interaction with friends, which they build up every day, as much as possible. This allows them to smoothly return to their local life after discharge. However, staff members were conflicted by the inability to adjust children’s treatment and examination times, due to the restrictions imposed by ward rules, and the children’s medical conditions. In supporting the siblings, staff working with children with LTC and their families expressed concerns about the siblings but experienced difficulties in engaging with them. In this context, staff members were usually proactive in asking parents how their siblings were doing and gathering information. Therefore, palliative care staff need to be able to understand and respect the values and wishes of children and families from when they are diagnosed with LTC to hospitalization.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eLTC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eLife-threatening conditions\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCLS\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003echild life specialist\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eOT\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eoccupational therapist\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was approved by the Ethics Review Committee for Clinical and Epidemiological Research in Health Sciences, Graduate School of Medicine, Nagoya University (No. 23-121). The information sheet clearly stated that participation in this study was voluntary, that no disadvantages would occur by non-participation, and that consent could be withdrawn even after it was provided. In addition, the information obtained from the interviews was de-identified by removing personal information, and the instructions clearly stated that no personally identifiable information would be included when the research results were published. Informed consent was obtained from all participants.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis work was supported by the Shibahara Medical Welfare Foundation. The sponsor had no role in relation to the study design, collection, analysis and interpretation of data, writing of the report and decision to submit the article for publication.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eRS and KN conceived the study. All the authors designed this study. MS, MH, YT, and KN acquired funding. MS and KN recruited participants. RS conducted the interviews and collected and analyzed the data. RS and KN interpreted and analyzed the data. RS drafted the manuscript. KN reviewed and edited the manuscript. TK, TN, and KN supervised the study. All the authors have read and approved the final version of the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe would like to express our sincere gratitude to the hospital staff who willingly agreed to participate in this study, and to the facilities for their understanding of the purpose of the study, for arranging the participants, and for conducting the interviews. This study was supported by Shibahara Medical Welfare Foundation. We would like to express our gratitude to this foundation. We would also like to thank the Aichi Children\u0026apos;s Hospice Project for their cooperation in recruiting participants.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe raw data supporting the conclusions of this article are available upon request to the authors, without any restriction.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors would like to confirm that this manuscript entitled, \u0026lsquo;Palliative care practices for enhancing the daily lives of hospitalized children with life-threatening conditions and their families: A qualitative study of practitioners\u0026rsquo; perspectives,\u0026rsquo; is an original research project, it has not been submitted to another journal nor published previously. The study design was approved by the appropriate ethics committee.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eChambers L. A guide to children\u0026rsquo;s palliative care. 4th ed. Year]: [accessed Date Month; 2018. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.togetherforshortlives.org.uk/app/uploads/2018/03/TfSL-A-Guide-to-Children\u0026rsquo;s-Palliative-Care\u003c/span\u003e\u003cspan address=\"https://www.togetherforshortlives.org.uk/app/uploads/2018/03/TfSL-A-Guide-to-Children\u0026rsquo;s-Palliative-Care\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e. -5.pdf.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTatara R. Wagakuni no shounikanwakea no genjo to kaigai no joukyo \u0026ndash;[Current status of pediatric palliative care in Japan and overseas] (pp. 2\u0026ndash;7). 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Focusing on life rather than illness: The lived experience of children with life-threatening and life-limiting conditions \u0026ndash; A qualitative study. Palliat Care Soc Pract. 2024;18:1\u0026ndash;17. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1177/26323524241301431\u003c/span\u003e\u003cspan address=\"10.1177/26323524241301431\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKittelsen TB, Castor C, Lee A, Kvarme LG, Winger A. What about me?\u0026rsquo;: Lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition. Int J Qual Stud Health Well-being. 2024;19:2321645. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1080/17482631.2024.2321645\u003c/span\u003e\u003cspan address=\"10.1080/17482631.2024.2321645\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003e\u003cstrong\u003eTable 2: Characteristics of the hospital staff.\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"108%\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003eStaff\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eProfession\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eExperience (yrs)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eExperience in caring for children in LTC (yrs)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eHospital affiliation (hospital)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003eWard affiliation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eInterview method\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003eInterview (minutes)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e１\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eNurse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003ePediatric medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e60\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e２\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eNurse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003ePediatric medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e61\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e３\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eNurse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003ePediatric medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e60\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e４\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eNurse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003ePediatric medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e53\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e５\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eNurse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e20\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e15\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003ePediatric surgery\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eTeams\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e87\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e６\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eNurse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003ePediatric specialty\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003eNeurosurgery\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eTeams\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e56\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e７\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eNurse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003ePediatric medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eFace-to -face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e52\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e８\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eNurse\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003ePediatric medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eTeams\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e50\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e９\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eCLS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003ePediatric medicine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e75\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eCLS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003ePediatric surgery,\u003c/p\u003e\n \u003cp\u003eOrthopedic surgery,\u003c/p\u003e\n \u003cp\u003eNeurosurgery,\u003c/p\u003e\n \u003cp\u003eNICU\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e81\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e11\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eHospital schoolteacher\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003eAll children\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e71\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eHospital schoolteacher\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003eAll children\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eFace-to-face\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e51\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 6.31579%;\"\u003e\n \u003cp\u003e13\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 15.7895%;\"\u003e\n \u003cp\u003eOT\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003e33\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003e28\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 14.7368%;\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 16.8421%;\"\u003e\n \u003cp\u003eAll children\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 11.5789%;\"\u003e\n \u003cp\u003eTeams\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 8.42105%;\"\u003e\n \u003cp\u003e64\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eCLS: child life specialist; NICU: neonatal intensive care unit; OT: occupational therapist\u003cbr\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 3: Qualitative content analyses of hospital staff\u0026rsquo;s responses.\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"954\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 331px;\"\u003e\n \u003cp\u003eCategories\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eSub-categories\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"4\" valign=\"top\" style=\"width: 331px;\"\u003e\n \u003cp\u003eCapturing the values and wishes of the children and their families in daily interactions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eCapturing the wishes of children and families first, without getting ahead of ourselves in our desire to guarantee the daily lives of children and families\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eCapturing the children and families\u0026rsquo; values through play and casual conversations\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eSharing the children and families\u0026rsquo; wishes with a multidisciplinary team and consulting with them to ensure that these wishes are fulfilled\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eWhen the goal is to achieve a cure of the disease, the priority is to proceed with treatment, even if it causes restrictions and impairs daily life\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 331px;\"\u003e\n \u003cp\u003eRespecting the wishes of children and their families regarding age-appropriate activities despite ward regulations and medical constraints\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eEnsuring life appropriate activities for each stage of development, without taking for granted ward rules and restrictions due to the medical conditions.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eArranging times and locations of treatment to enable participation in local school events and play and learning time on the ward\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eWhile working with the children, they teach us how to treat them normally and not treat them specially because of their illnesses\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 331px;\"\u003e\n \u003cp\u003eCreating an environment where children can do their best during hospitalization\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eWorking with the children to identify ways to actively engage in rehabilitation\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eMulti-disciplinary sharing of information on how things are progressing with rehabilitation, assessment of muscle strength, and discussion on daily interventions\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eCreating a pain-free environment and time for change of scenery to ensure stability for the children and families\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 331px;\"\u003e\n \u003cp\u003eMaintaining good relationships between the children and their families and valuing the time they can spend together as a family\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 624px;\"\u003e\n \u003cp\u003eAllowing time for parents to feel safe away from their children at the hospital\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eTable 3 (continued)\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"945\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eCategories\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eSub-categories\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"5\" valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eMaintaining good relationships between the children and their families and valuing the time they can spend together as a family\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eBringing parents and children together when the relationship between parents and children seems to be deteriorating.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eTalking to parents accompanying their children to the hospital to reduce their anxiety.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eGathering information on siblings who spend time at home and follow-up of the whole family, including siblings\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eArrangements to allow families to spend time together despite restrictions imposed by visitation rules\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eMulti-professional coordination of when to go home between treatments\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eConnecting between children on the ward\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eCreating an environment where children of the same age group in the ward can interact with each other\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eInformation sharing with multi-disciplinary staff on friendships on the ward to learn about children\u0026apos;s relationships\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eExplaining to the child that a friend has died and offering support afterwards\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"2\" valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eMaintaining links with local schools to ensure a smooth return to the local school after discharge\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eFinding out about local friendships by asking the child directly or by watching them interact with local friends online\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eInforming the children about the course of treatment and how to deal with classmates and teachers from the local school, who tell them how the child was before being admitted to the hospital\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd rowspan=\"3\" valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003eBuilding on daily practices in multiple professions to ensure that all staff are aware of the importance of guaranteeing daily lives\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eInvolvement of all staff in raising awareness of the importance of guaranteeing daily life\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eRespecting the values of each staff member to avoid conflicts between staff with different views\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 605px;\"\u003e\n \u003cp\u003eSharing experiences of practices that enhance daily life among staff and applying them to the next child they meet\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-palliative-care","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pcar","sideBox":"Learn more about [BMC Palliative Care](http://bmcpalliatcare.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pcar/default.aspx","title":"BMC Palliative Care","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Palliative care, life-threatening conditions, hospitalized children, families, professionals","lastPublishedDoi":"10.21203/rs.3.rs-8698612/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8698612/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground:\u003c/h2\u003e \u003cp\u003eThis study aimed to elucidate palliative care practices, such as playing, learning, socializing, family time, and physical engagement, that enhance the daily lives of hospitalized children with life-threatening conditions (LTCs) and their families and to identify the challenges related to these practices.\u003c/p\u003e\u003ch2\u003eMethods:\u003c/h2\u003e \u003cp\u003eIn 2024, semi-structured interviews were conducted on hospital staff recruited from a university\u0026rsquo;s pediatric specialty hospital to explore their perspectives on palliative care practices. Qualitative content analysis was performed to summarize the practices and challenges.\u003c/p\u003e\u003ch2\u003eResults:\u003c/h2\u003e \u003cp\u003eThe participants included eight nurses, two Child Life Specialists, two hospital schoolteachers, and one occupational therapist. The participants had respect for the values and wishes of the children and families during daily interactions. They were also sufficiently flexible to allow the children to enjoy age-appropriate activities despite ward regulations and medical constraints. Although the children experienced difficulties due to limited opportunities to physically see their siblings, their parents provided them with information about their siblings.\u003c/p\u003e\u003ch2\u003eConclusions:\u003c/h2\u003e \u003cp\u003e The participants assisted the children with LTCs and their families in fulfilling their wishes and engaging in age-appropriate activities. They also provided support to the entire families, including their siblings. However, challenges exist owing to time constraints, ward regulations, and medical constraints.\u003c/p\u003e","manuscriptTitle":"Palliative care practices for enhancing the daily lives of hospitalized children with life- threatening conditions and their families: A qualitative study of practitioners’ perspectives","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-02-05 19:00:35","doi":"10.21203/rs.3.rs-8698612/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-03-27T09:57:13+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-26T22:40:50+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-03-07T00:16:01+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"245141223104628256571693368776681511384","date":"2026-03-06T14:38:13+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"329842051560466500761369083658640814305","date":"2026-03-06T12:09:53+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"141516399322374256943764293493006091564","date":"2026-02-10T00:45:22+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"143760363178989725951106998563334627858","date":"2026-02-03T20:46:13+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-02-03T08:19:38+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-02-02T08:57:58+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-01-27T06:50:57+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-01-27T06:48:52+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Palliative Care","date":"2026-01-26T09:12:30+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-palliative-care","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pcar","sideBox":"Learn more about [BMC Palliative Care](http://bmcpalliatcare.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pcar/default.aspx","title":"BMC Palliative Care","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"1c7d584d-3ff9-44f3-8987-a6bda6fb11e6","owner":[],"postedDate":"February 5th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-07T06:24:33+00:00","versionOfRecord":[],"versionCreatedAt":"2026-02-05 19:00:35","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8698612","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8698612","identity":"rs-8698612","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}