Abstract
Background
Cancer treatment for children is typically long-term and difficult, and the experience is unique for each child. When designing child-centred care, individuals’ values and preferences are considered equally important as the clinical evidence; therefore, understanding children’s thoughts and attitudes while they receive long-term treatment could offer valuable insights for better clinical practice.
Methods
We conducted long-term consecutive participatory observations and interviews with seven children, who were hospitalised and receiving cancer treatment for the first time. The daily observational data on those children’s discourses, behaviours and interactions with health professionals were systematically collected and thematically examined. The analysis was expanded to explore significant narratives for each child to capture their narrative sequence over time.
Results
The initial analysis identified 685 narrative indexes for all observation data, which were categorised into 21 sub-codes. Those sub-codes were assembled into five main themes by thematic analysis: making promises with health professionals, learning about the treatment procedures through participation, taking care of oneself, increasing the range of activities one can perform and living an ordinary life.
Conclusion
We observed a forward-looking attitude toward understanding cancer, accepting treatment and looking forward to the future among children undergoing in-hospital cancer treatment. In addition, the children developed cognitively, affectively and relationally throughout cancer treatment processes. These findings have implications for better clinical practice in child-centred care, including children’s participation in shared decision-making in paediatric oncology.
Keywords: Qualitative research, Psychology, Anthropology
WHAT IS ALREADY KNOWN ON THIS TOPIC
Consideration of children’s values and preferences is an important factor in decision-making in paediatric oncology, however, its inclusion remains insufficient. This may partly reflect a lack of understanding of children’s thoughts and attitudes in the ward.
WHAT THIS STUDY ADDS
This longitudinal observational study in a paediatric cancer ward clarified that children developed forward-looking thoughts and attitudes through supportive interactions with health professionals and others in the ward.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
The development of strong relationships between children and individuals who support their emotional and social development would improve the clinical practice of child-centred care, including the addition of children’s participation in shared decision-making in paediatric oncology.
Introduction
In paediatric oncology, paediatricians have recently emphasised the need to consider the values and preferences of children and their families in selecting treatment options.1–3 Social norms are changing to include the perspectives of children in all aspects of life, a change reflected in clinical policies and practices, which are now beginning to proactively include child patients.4 Paediatricians must openly share information about cancer diagnoses with children and their families in consultation, although this may be challenging in various cultural and social contexts. Despite these cultural constraints, children can better participate in decision-making and collaborate with paediatricians about their own care, which is the most important aspect of child-centred care.3 5 6
Currently, more research is needed on patient participation to identify optimal procedures and the effects of collaboration.7–9 Theoretically, child-centred care is developed specifically for paediatric patients, facilitating tailored care and support to fulfil the child’s best interests.5 However, the research-based evidence for children’s participation is sparse.10 Most of the literature on children’s experiences is based on reports by caregivers, healthcare professionals, and adolescent patients or survivors, not on reports by the children themselves.6 11–18 Most relevant research comprises cross-sectional studies using one-time interviews or surveys, and therefore fails to capture the children’s history.10
Therefore, we designed this long-term participatory observational study to examine children’s emotions, thoughts and actions—and changes in them over time—during hospitalisation for cancer treatment. The longitudinal design allowed us to consider how, in each child’s case, particular values and preferences emerged and developed during an extended hospitalisation. The findings could have valuable implications for better informed clinical practice in paediatric oncology.
Methods
Principal investigator
The principal investigator (PI) is a trained specialist in medical anthropology and public health. The PI has over 20 years of research experience in social science and medicine, including 9 years in paediatric oncology.
Research design and data collection
We designed a long-term, participatory observational study to examine children’s perceptions and actions toward cancer treatment over time. This study occurred in the context of long-term hospitalised treatment in a paediatric ward at Sapporo Medical University Hospital, Sapporo, Japan. The university hospital paediatric ward provides medical care for children with various health problems. The data were collected over 141 days between January 2016 and March 2018.
Patient and public involvement
Before starting the research, we conducted a month-long pilot study and established relationships with potential participants. We carefully developed the research question and protocol to include the insights of children undergoing cancer therapy and their parents. The coinvestigators were the children’s primary physicians (MY, KI, YS, YA, DY, AT) and chief nurse (TM), and so were familiar to the children. The children first became acquainted with the PI during the pilot phase. The PI was a hospital volunteer to the children and informed them that she wished to talk and play with them.
In the full study, the PI observed the children four to five times monthly, from morning until evening. The PI also carefully observed how, during morning and evening examinations and treatments, health professionals tell children about treatment procedures and encourage them to participate or show their willingness to participate. The PI frequently conversed with children and their caregivers, following an interactional guideline developed in the research protocol and tested in the pilot study. The PI observed children in a natural setting in the absence of children not involved in this study.
The participating children comprised five boys and two girls hospitalised for haematological cancer treatment at the first onset of the disease. Their ages ranged from 5 years and 2 months to 10 years and 2 months (median: 8 years and 8 months). The study period for each child lasted from 111 to 230 days, and their total participation ranged from 20 to 28 days.
One of the primary physicians (MY) selected potential participants following the criteria in the research protocol. MY explained the study aims and goals to the children and parents, who provided informed assent and consent, respectively. No one declined to participate or withdrew from the study.
The PI took a field note for each observation and later wrote a clean copy to be sent to the coinvestigators. The primary physicians ensured the physical state of the participating children on the day of the observation and permitted the PI to conduct observations each time.
Narrative analysis
We analysed a large amount of data on observed narratives and children’s discourse, using a qualitative analysis that combined classic thematic narrative analysis,19 which is widely used in clinical and healthcare research,19 20 and longitudinal narrative analysis.21 The PI read and re-read the observational records during the initial analysis process, identified meaningful narratives that revealed recurrent patterns of children’s actions and discourse, and extracted the narrative segments by indexing. The narrative segments conveying the emotions and viewpoints of the children were also indexed.
Collecting data through extensive engagement with the children, the PI memoed, indexed and coded all the text from the observations and informal dialogues. The coinvestigators read the text and coded results using a reflexive approach, questioning each finding and considering alternative interpretations. Instead of a formal member check, direct responses from the participating children and their caregivers were obtained promptly in situ.
The analysis proceeded by obtaining an overall sense of the meaning of each day’s record and comparing and contrasting the parts of each account in relation to the whole set of records.20 We continued this process until we arrived at holistic understandings or identified overarching themes encompassing the meanings of the parts. The analysis required close scrutiny of the social context of daily actions and discourses and a deep focus on each account individually and in relation to other accounts, rather than simply indexing and counting the narrative codes.20
The PI then carefully examined the meanings of the indexed narratives, sorted related ones into a sub-code, and finally assembled related sub-codes into a larger inclusive theme. Next, the PI arranged the indexed narratives chronologically for each individual to comprehend the entire history of the children’s treatment experiences and examine their longitudinal development. This secondary analysis was based on a theoretical assumption that narratives have reasons for how and when they emerge.21 This approach thus captured the unique history of each patient thematically.
This longitudinal narrative analysis gave investigators valuable insight into theoretically comprehending and arranging the sequence of sub-codes and inclusive themes. Accordingly, the observations and informal dialogues were carried out until the patients were discharged from the hospital, and new patients were added until theoretical data saturation. The prolonged engagement and dialogue with participating children throughout the study enabled researchers to clarify the meanings of children’s attitudes and actions from the children’s perspectives, a primary method of validating interpretation in an observational narrative study.22 The final results emerged through extensive analytical discussions between the principal supervising coauthor (HT) and the PI, and were reviewed by all coinvestigators.
Results
The observations in the ward from 2016 to 2018 yielded approximately 577 000 characters of data in Japanese. The initial analysis identified 685 narrative indexes for all observation data and categorised them into 21 sub-codes. The subsequent thematic analysis assembled the 21 sub-codes into five main themes. Longitudinal analysis of the appearance of corresponding narratives determined the order of these five main themes to approximate the following: making promises with health professionals, learning about the treatment procedures through participation, taking care of oneself, increasing the range of activities one can perform and living an ordinary life. Table 1 presents short narratives of individual children to illustrate the themes.
Table 1.
Inclusive themes and illustrative narratives: children’s perspectives
| Inclusive theme | Illustrative narrative |
| Making promises with health professionals | Sakura* (10 years old) was scheduled to undergo haematopoietic stem-cell transplantation the following month. Having been informed of her condition, she had consented to the treatment decision, made various promises regarding the treatment, and acted responsibly by preparing herself for pretreatment and staying in her room. One day, she asked a physician: “What will happen after the transplantation? When can I go home?” Physician: “One month after the transplantation, you will be well enough to walk around the ward. Two months later, you will be able to go home. That would be around the first week in May.” Sakura listened silently and nodded. (Field notes: Winter 2017) |
| Learning about the treatment procedures through participation | Daisuke (8 years old) spent 6 months in the hospital. Having had difficulty adapting to the hospital environment, he tried to understand the details of his treatment by listening to the physicians and asking questions. One day, his physician explained his intravenous medicine and the steroid-induced hyperphagia. Daisuke asked, “What should I do if I have this symptom?” Attending physician: “If your appetite is stronger than usual, please let us know. Our team can help you with the problem while you continue to work with a nutritionist for diet therapy. Don’t worry too much.” Daisuke learnt how to control his condition, and continued to participate in diet therapy by selecting and weighing snacks. (Field notes: Winter 2016) |
| Taking care of oneself | Akira (9 years old) had received his first consolidation therapy the previous week. He had suffered from febrile neutropenia. He was aware of his condition, talked with his health team, and determined to stay in his room for the subsequent week. The rest period passed. Akira felt bored and decided to attend a hospital school. He got permission from his physician. Akira’s friends and his teacher waited for him in the classroom. They worked on a craft project and played miniature golf together. Akira was delighted, but quickly became exhausted. He informed the teacher of his physical state: “I am tired.’’ His friends observed him with concern. Teacher: “Are you going back to your room to have a rest?” Akira: “Yes, I am.” Akira stored the golf club and returned to his room to relax. (Field notes: Winter 2017) |
| Increasing the range of activities one can perform | Hinata (8 years old) had a hard time completing her cancer treatment. Despite being sedated for the painful treatment procedures, she always turned away from the physicians and nurses before the sedative administration. Hinata decided to work with her attending nurses to overcome her difficulties, and later said, “I’m not sure why I didn’t like the treatment.” One day, Hinata said to her physicians and nurses, ‘I can be patient with the treatment. Please promise me that you will tell me when you are about to start the sedation. Then I will tell you I am okay with it.” The physicians promised Hinata that they would. (Field notes: Summer 2017) Hinata successfully underwent the therapy, moved on to maintenance therapy and was able to work with the physicians. (Field notes: Fall 2017) |
| Living an ordinary life | Minato (8 years old) had entered maintenance therapy, and was undergoing MRI that day. He wanted the examination to feel as normal as possible, so he decided not to have sedation before having the MRI. Aya, the mother of his friend, called him in the hallway: “I’ve heard you are not having sedation today. You’re brave.” Minato: “Kind of.” Aya was one of the people who had supported Minato since his hospitalisation. On that day, he successfully underwent the MRI, rested in his room and spent the afternoon with his friends in a communal social room in the ward. (Field notes: Winter 2017) |
*All participant names are pseudonyms.
Making promises with health professionals
The first theme comprised five sub-codes, which were represented in 98 indexed narratives: receive treatment while facing challenges, N=38; rely on physicians and parents, N=19; make promises and take responsible actions, N=17; share one’s mind by listening, speaking and getting an answer, N=14; develop one’s will for treatment through long-term relationships with health professionals, N=10.
During the first period of treatment, children listened to the procedures and made promises with health professionals rather passively, facing challenges and difficulties they had never faced. Through everyday promises and interactions in the ward, they gradually overcome the challenges and came to behave responsibly, and their cognitions and attitudes toward cancer care were transformed positively.
Learning about the treatment procedures through participation
The second theme comprised three sub-codes, represented in 80 indexed narratives: learn by oneself through repeating, reflecting and remembering, N=30; learn by hearing from physicians and asking questions, N=28; learn by participating and taking an active role in the treatment, N=22.
It is essential for children to be able to learn many things in the context of everyday relations, and to make promises with healthcare professionals. The children cultivated a positive attitude, learnt about treatment while becoming familiar with the hospital environment and demonstrated their growth over time.
Taking care of oneself
The third theme comprised four sub-codes, which were represented in 91 indexed narratives: take care of one’s body in awareness of one’s therapy and bodily conditions, N=33; take care of each other with one’s friends on the ward, N=27; take care of one’s body by notifying caregivers of one’s body status and changes, N=19; and relax to make oneself better, N=12.
Children in the ward had many bitter experiences during their long hospitalisation, particularly resulting from their cancer treatment. Such experiences enhanced their alertness to their body conditions. To receive care as necessary, they must be able to consciously relax without being overactive and inform their caregivers of any changes. The presence of their friends could help alleviate their suffering.
Increasing the range of activities one can perform
For this fourth theme, 115 indexed narratives were classified into five sub-codes: be able to receive treatment confidently, N=43; be able to carry out various activities on one’s own, N=24; be able to see goals and plan ahead, N=22; be able to live an ordinary life, N=16; and be able to do activities in supportive relationships, N=10.
When their health improved, the patients could think about and engage in what they could do in the ward. Their cancer treatment was not endured alone but was supported by many people, particularly during complex and challenging times. By improving their performance, they gained confidence and enjoyed their everyday life.
Living an ordinary life
Indexed narratives for the fifth and last theme were the most numerous at 301, and were categorised into four sub-codes: have a pleasant time with one’s friends, N=139; live naturally as one ordinarily does, N=75; see and live the treatment days as usual, N=58; and live an ordinary life with the support of surrounding people in the ward, N=29.
Children were nurtured by their parents, families and others, even in a hospital environment. These people helped to create a caring atmosphere similar to children’s home lives so that their time in the ward was as pleasant as possible. Their genuine desire for ordinary life could also be fulfilled through friendships and interactions with other children in the ward.
Discussion
Longitudinal and thematic narrative analysis of ethnographic observational data on children undergoing inpatient cancer treatment revealed children’s emotions, thoughts and actions during their long-term hospitalisation. Through daily clinical encounters, the children trusted health professionals, made promises with them and accepted medical procedures. This development accompanied situational learning and taking responsibility for their body and health. Through receiving valid information and making promises with health professionals, children were able to face their treatment positively and with the hope of eventually leading a normal life again. As they gradually recovered their health and increased their range of activities, they partly regained their usual life, or foresaw the possibility of such a life. Our most significant finding was that daily interactions in the ward can generate cognitive, emotional and learning development in individual children.
A narrative review of the illness identity among children and youth with cancer revealed that their experience profoundly affected their identity formation both positively and negatively.23 The reliable relationships with health professionals observed repeatedly in our study could be a positive influence on children’s identity formation. Similarly, a qualitative study on adolescents and young adults with cancer found that self-care or self-advocacy is essential for facing long-term illnesses.17 Furthermore, self-management has emerged as an important theme among young childhood cancer survivors.24 Our study also identified self-care actions among younger children after hospitalisation, indicating that such self-care begins at much younger ages and earlier in the treatment process than expected.
The present study illuminates the longitudinal processes of childhood cancer patients engaging in various activities and living their lives. They did not hope to be perceived differently or receive special treatment; rather, they valued living an ordinary life as at home. A substantial number of indexed narratives in our study attested to children’s wish for an ‘ordinary life’, indicating its essential value to paediatric cancer patients. A study on advance care planning among adolescents and young adults undergoing bone marrow transplants also showed the value placed on normal, everyday life with their families and friends at home.16 Pursuing normality was also a common theme in a study of children with life-limiting conditions.25
Child-centred care must be directed by these children’s perspectives,25 however, many researchers have stressed the still-inadequate involvement of children in paediatric care.26 27 Because of a research gap, the effects of shared decision-making has yet to be proven.7–9 28 At present, a model to promote participatory decision-making reflects adults’ fixed views of the children’s interests without exploring their variety.29 Paediatric medicine should promote patient participation while incorporating patients’ diverse views and opinions following their developmental maturation.30
Our study necessarily reflects the culturally unique medical system in Japan, where long-term hospitalisation is the norm for paediatric cancer treatment. Patient–health professional relationships emerge from clinical communication in such a medical system. Research on the experiences of paediatric patients in other countries could inform a more complex and comprehensive argument about paediatric shared decision-making.
Participatory observational studies informed by the framework of anthropology value naturalistic observation and minimum interruption of people’s ordinary lives. Accordingly, rather than using multiple interviewers and data coders, we relied on the PI’s expertise in remembering material, writing, and analysing the text. This is a potential study limitation.
Conclusion
This long-term observational study of children undergoing cancer therapy clarified that the children created and maintained a forward-looking attitude toward understanding cancer, accepting treatment and looking forward to the future. Their positive cognitions and attitudes may have resulted from creating reliable relationships with health professionals. These findings have valuable implications for better clinical practice in child-centred care in paediatric oncology. The rich human relationships that are established in the paediatric ward should be enhanced further by understanding and respecting the development and expression of children’s feelings.
Supplementary Material
Acknowledgments
We thank Edanz (https://jp.edanz.com/ac) for editing drafts of this manuscript. The manuscript contents are solely the responsibility of the authors and do not necessarily represent the official views of Sapporo Medical University, Sapporo Medical University Hospital or any of the other funding agencies.
Footnotes
Contributors: All authors contributed to the project. RM and HT jointly conceived the study, and MY, KI, YS, YA, DY, AT, TM and TT contributed as coinvestigators. MY, KI, YS, YA, DY, AT, TM, HT and TT helped with the acquisition, analysis or interpretation of data for the work. RM drafted the manuscript, and HT, MY and TT critically revised it for scientific quality. KI, YS, YA, DY, AT and TM contributed to important intellectual content. HT, TT and MY supervised the study processes. All authors read and approved the final manuscript and agree to be accountable for all aspects of the work, ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The author RM takes full responsibility for the content and serves as the guarantor for the work.
Funding: This study was supported by JSPS Grant-in-Aids for Scientific Research (18K02487, 21K02409) and Sapporo Medical University Grants for Programmes Promoting Academic Advancements (1900048, 2000192 and 2100207).
Competing interests: No competing interest.
Patient and public involvement: Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review: Not commissioned; externally peer reviewed.
Data availability statement
Data are available upon reasonable request. The data supporting this study’s findings that do not compromise the participants’ privacy are available upon reasonable request from the corresponding author, RM (michinor@fpu.ac.jp). All such data are in Japanese. Because the study investigated a small number of patients over a long period at one medical institution, some of the supporting data are not available in a public repository owing to ethical reasons, the legal protection of participants’ personal information, and the need to ensure participants’ privacy. These data include details of physical conditions, medical records and observational records that contain information about the patients’ personal circumstances.
Ethics statements
Patient consent for publication
Not applicable.
Ethics approval
This study involves human participants and was approved by the Institutional Research Review Board of Sapporo Medical University Hospital on 16 November 2015 (approval number: 272-69). Participants gave informed consent to participate in the study before taking part.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
Data are available upon reasonable request. The data supporting this study’s findings that do not compromise the participants’ privacy are available upon reasonable request from the corresponding author, RM (michinor@fpu.ac.jp). All such data are in Japanese. Because the study investigated a small number of patients over a long period at one medical institution, some of the supporting data are not available in a public repository owing to ethical reasons, the legal protection of participants’ personal information, and the need to ensure participants’ privacy. These data include details of physical conditions, medical records and observational records that contain information about the patients’ personal circumstances.