Abstract
Parental participation in shared decision-making in children’s cancer therapy is essential because parents advocate for and support their children’s wishes. However, little research has focused on this issue. We conducted a longitudinal observational study of 7 parents whose child had received their first cancer treatment. We recorded parents’ behaviors, interactions, and narratives in 1 pediatric ward and 2 outpatient clinics. The recordings were systematically conducted and thematically analyzed using variable-oriented and process-oriented modes to assess the causal relationships among phenomena. We found 4 themes describing the processes by which parents developed and participated in shared decision-making. The first 2 themes reflected the development of reciprocal parental relationships and parent-other child relationships. These 2 types of relationship generated mutual trust and a sense of solidarity among parents (the third theme). This, in turn, became the foundation for parents to share decision-making with health care professionals (the fourth theme).
Introduction
Parental participation in shared decision-making in childhood cancer therapy is as important as children’s participation, because parents advocate for and support their children’s wishes.1-4 However, few studies have explored the processes by which parental shared decision-making develops.
Some research has focused on the nature of interactions and obstacles between parents and physicians in shared decision-making; for example, perceptual differences between parents and physicians, 5 discrepancies between preferred and actual parental roles, 6 parental expectations about the function of childhood cancer survivors, 7 and parental regret regarding engagement in decision-making.8-11 Research has also identified the importance of the deliberation phase (eg, information provision and information comprehension) 12 and communication roles (eg, engendering solidarity and validation). 8 These previous studies highlight the essential aspects of parental participation in shared decision-making and the need to carefully assess such participation.
However, previous studies have not fully explained how parents think and perform in shared decision-making. One unique audio-recorded observation of diagnostic consultations with pediatric oncologists captured parental involvement in shared decision-making; 13 however, the study focused only on consultations. To our knowledge, there are no studies on parental shared decision-making in the general hospital setting that have examined temporal changes in decision-making and involved multiple persons who could affect parental decision-making.14,15
Therefore, we conducted a longitudinal observational study in 1 hospital ward and 2 outpatient clinics in Japan of parents whose child had received their first cancer treatment. We analyzed the processes by which parents participated in shared decision-making with physicians and other health professionals.
Materials and Methods
Investigators and Settings
The principal investigator, a medical anthropologist with more than 20 years of experience in participatory observational research on child and adolescent health, conducted consecutive observations at Sapporo Medical University Hospital (Sapporo, Japan) and Hakodate Municipal Hospital (Hakodate, Japan) from January 2016 to March 2018 and from April 2018 to February 2020. Eight physicians and 1 pediatric nurse contributed as coinvestigators.
A family-friendly research design was used in which the principal investigator conducted natural observations of parents in their daily lives. This research design required a long-term perspective; observations were conducted more than 141 days. Observations began when parents felt comfortable with the hospital environment. Observations were stopped whenever parents felt exhausted by trying to manage the positive and negative experiences related to their children’s condition.
Following the family-friendly research principle, the principal investigator observed parental behaviors in the pediatric ward for a whole day 4 to 5 times a month. The principal investigator accompanied physicians and nurses on their regular ward rounds and during daily treatment, and periodically participated in play and socialization activities with children in the playroom. The observations in the playroom allowed the principal investigator to observe parenting behaviors and participate naturally in parent-child conversations.
After children’s discharge from the university hospital, the principal investigator observed parental behaviors in the consultation and waiting rooms of the hospital outpatient clinics 2 to 5 times a month for a total of 70 days; each observation involved 15 to 30 minutes of open dialogue with parents.
All observations during the children’s hospitalization were conducted in the pediatric ward of Sapporo Medical University Hospital. Follow-up observations took place at Sapporo Medical University Hospital clinic for 5 patients and at Hakodate Municipal Hospital clinic for 1 patient. One patient was cared for at home after hospital discharge, so the parents of this child were not involved in follow-up observations.
Cases
A purposive method was used for case recruitment. The inclusion criteria for children were as follows: aged 5 to 12 years, diagnosed with hematologic cancer, and expected to undergo intensive cancer care for >6 months. Parents of children who had been admitted to the hospital in the past few weeks were excluded. Parents of children older than 13 years were also excluded, because it was assumed that parents’ decision-making behaviors would be different for older children.
In total, 7 parents were recruited and provided their written informed consent for study participation. They comprised 6 women and 1 man and were aged 23 to 45 years (median: 38 years). Their children ranged in age from 5 years, 2 months, to 10 years, 2 months (median: 8 years, 8 months). Children’s length of hospitalization ranged from 186 to 472 days (median: 334 days). The children’s diagnoses were acute lymphoblastic leukemia (4), acute myeloblastic leukemia (2), and Burkitt lymphoma (1). One parent (a woman aged 37 years) only participated in the hospitalization period of the research.
In Japan, cancer patients generally receive long-term hospital care, and the expenses are covered by public health insurance. Children receive additional support because there is a subsidy system for medical treatment for babies and children; this includes treatment for specific pediatric chronic diseases. While in hospital, parents meet the same team members every day; during clinic visits, patients are able to consult the same physicians, even if patients are transferred to regional hospitals. This ensures consistency in the quality of services.
Data Collection Procedures
The principal investigator postulated that the development of parental decision-making is associated with some extent with parents’ everyday social behavior outside of clinical situations (eg, interactions with their child and interactions with other children and their parents at the hospital). Therefore, the principal investigator collected data related to parents’ daily lives and sustained relationships throughout hospitalization and follow-up. The principal investigator started observations after the critical care period when each parent had become accustomed to hospital life. During the study, the principal investigator created field notes to summarize each daily conversation, parental behavior, open dialogue data, and observation of diagnostic consultations. Two physicians regularly read the field notes. The field records totaled approximately 288 500 words of description (577 000 Japanese characters) during the hospitalization period and approximately 128 000 words (256 000 Japanese characters) during the follow-up after discharge. In addition, the principal investigator obtained information from medical records about children’s health status, treatment processes, and parent-health professional interactions. This information complemented the qualitative analysis and was used to facilitate the interpretation of parental discourse and observed behaviors.
Data Analysis
Thematic narrative analysis was conducted according to the theory and practice of narrative inquiry. 16 Using variable-oriented and process-oriented modes of analysis, the principal investigator extracted narratives that captured parental discourses, behavioral patterns, and those parental thoughts that seemed to provide a rationale for the emerging patterns. The principal investigator indexed and analyzed extracted narratives to identify the structure of parents’ thoughts, discourses, and behavior. The indexed narratives were classified into concomitant modes of narratives, subthemes, and broad themes. The principal investigator carefully counted the number of narrative segments for each mode in the files and grouped them under broad themes. Using a process-oriented mode of analysis, the principal investigator charted the details of parental discourses and behaviors chronologically and created a comprehensive summary of the decision-making process.
The principal investigator and 4 coinvestigators (3 physicians and 1 nurse) who participated in the data analysis and interpretation comprehensively reviewed the observational records and the analytical processes. The other 5 coinvestigators (all physicians) supported the data collection and critically revised the article. We worked in a participatory and collaborative way to reach agreement on the analysis through a step-by-step process. We assessed the quality of the emerging themes by examining the consistency of the variable-oriented and process-oriented modes of analysis and by confirming that the themes were sufficiently supported by the extracted narratives. Throughout this procedure, the principal investigator regularly shared the interim findings with the coinvestigators and reflected on the analysis. The research participants were periodically invited to provide their own accounts of the observational process via informal conversations, and these were compared with the researchers’ understanding to detect and reduce analysis errors.
Results
We extracted 383 narrative segments from the field notes. The narrative segments expressed the processes by which parents developed and participated in shared decision-making. We classified these processes into 4 themes. The first theme expressed the realization of reciprocal parental relationships. The second theme comprised the realization of parent-other child relationships. Through the generation of these 2 relationship modes, mutual trust and a sense of solidarity among parents developed (the third theme). These 3 thematic scenes mainly appeared consecutively from hospitalization until discharge; however, some also appeared concurrently and repeatedly throughout the study, including the post-discharge follow-up period. Mutual trust and a sense of solidarity among parents became the foundation for parental shared decision-making with health professionals (the fourth theme). We present below the numbers and important modes of the narrative segments associated with the 4 themes and briefly explain their meaning (Tables 1-4). Table 5 shows a concise chronological history of discourse and behavior for 1 selected parent in the hospital.
Reciprocal Parental Relationships.
Parent-Other Child Relationships.
Mutual Trust and a Sense of Solidarity.
Sharing Decision-Making.
A Concise History of Daily Discourse and Behavior for 1 Parent in Hospital.
Reciprocal Parental Relationships
We identified 86 narratives that related to parental relationships: 46 during the hospitalization period and 40 during the post-discharge follow-up period (Table 1). We classified the narratives into 3 subthemes of interactions: talking, 30; sharing, 22; and uniting, 34.
Parental relationships that developed during the period of hospitalization persisted after discharge, sustaining parents emotionally and socially. Parents conversed with each other on various occasions, talking about their suffering and exchanging their anxieties, and interacted as if they were a family. The friendships among their children supported these close relationships.
Parent-Other Child Relationships
We identified 44 narratives related to parent-other child relationships: 35 during hospitalization and 9 during post-discharge and follow-up (Table 2). Similarly to our classification of parental relationships, we were able to classify parent-other child relationships into 3 subthemes of interactions: talking, 13; sharing, 13; and uniting, 12. A unique addition to this mode was playing, which contained 6 narrative segments.
Parents occasionally and intimately interacted with other children with cancer by playing with them, speaking to them, sharing their pain and worry, and generally treating them as family. Parents provided more basic and routine care, such as feeding, bathing, dressing, and assisting with medication-taking, only for their own children; these behaviors were not observed in parent-other child relationships.
Mutual Trust and a Sense of Solidarity
We read through the narrative descriptions of the first 2 relationship modes (ie, reciprocal parental relationships and parent-other child relationships). We identified an additional type of narrative that appeared to reflect mutual trust and a sense of solidarity among parents. As the first 2 relationship modes developed, mutual trust and solidarity narratives began to emerge. We identified 52 such narratives from the hospitalization period and 117 from the post-discharge and follow-up period (Table 3). We classified the narratives into 4 subthemes: trusting and opening one’s heart, 52; being thoughtful, 34; bringing stability to daily life, 54; and widening the circle of compassion, 29.
Because they had constant concerns about their children’s health and subsequent life after treatment, parents related to each other and trusted each other as if they were 1 large family. Such relationships comforted them, brought stability to their lives, and engendered their sense of solidarity.
Sharing Decision-Making
As parental mutual trust and a sense of solidarity formed strong bonds among parents, a fourth kind of narrative emerged that expressed a connection between parents’ awareness and their actions of shared decision-making. We recorded 84 such narratives, 22 during hospitalization and 62 during the post-discharge and follow-up period (Table 4). We summarized the narratives into 3 subthemes: trusting health professionals, 28; facing challenges together, 17; and sharing decision-making, 39.
By deepening their reciprocal relationships and sense of solidarity, parents also fostered a shared sense of confidence in therapeutic decisions made by health professionals. The active contribution to shared decision-making among parents whose children had been in hospital had positive effects on parents whose children were newly hospitalized.
Discussion
We conducted a longitudinal observational study in 1 hospital ward and 2 outpatient clinics on the behavior and narratives of parents whose children had received cancer treatment for the first time. We found that parents established mutual trust and a sense of solidarity through their daily interactions and mutual care of their children. Their alliance brought inner peace and solidity to their lives. Parents’ secure relationships generated the realization that they could trust and work together with health professionals. This shared value of parental confidence in health professionals allowed parents to participate naturally in shared decision-making about their children.
Our examination of the development of parental decision-making generated 2 unique findings. First, the sense of solidarity among parents seemed to be positively associated with a sense of fulfillment in becoming involved in shared decision-making. This association is apparent in the flow of the narratives and suggests the existence of social-relational influences on parental decision-making beyond clinical relationships. Second, “group consciousness” was identified as having a powerful effect on parents’ development of a sense of trust in health professionals, which seems to be a prerequisite for authentic participation in shared decision-making.
Research on parental shared decision-making has primarily focused on logical and legal/ethical aspects of judgment, such as the roles and responsibilities of physicians,17-19 physician-parent communication,5,8,20-22 and parents’ and physicians’ perceptions and attitudes toward shared decision-making.1,5,23 Many of these studies have highlighted physician communication factors that promote parental involvement, such as providing parents with accurate and comprehensive information about diagnosis and prognosis5,24 and thoughtful communication that considers parental wishes and preferences.6,9,12,22,24
Other studies have focused more closely on the issue of information provision, such as the role of physician responsibility in presenting available options to parents, 17 and have identified the social-interactive nature of decision-making in the context of family relationships. 15 All these studies define parental shared decision-making as a joint consensus based on mutual understanding between physicians and parents. Using the views of patients and parents to inform medical care, medical experts can create a common ground from which a consensus on treatment can be reached.25,26 However, more research is needed to fully explore the importance of a range of broad human relationships in hospital settings, and to investigate the role of parental culturally shared lay beliefs in medicine in the development of shared decision-making and the creation of a therapeutic community comprising patients, parents, physicians, and nurses.
In the present study, we examined aspects of broader human relationships in hospitals in terms of the development of parental decision-making and identified how decisions manifest themselves in dynamic daily interactions among and between parents, children, and health care professionals. The research approach enabled us to broaden our clinical encounters by observing parental participation in various situations within the wider hospital community. As Kon and Morrison 25 argued, shared decision-making in pediatrics is fundamentally different from that in adult medicine, and a broad perspective is needed to investigate the nature of shared decision-making in the pediatric context.
During the study, we observed the developmental process of parental shared decision-making from the parents’ perspectives. This process was concurrent with the enrichment of parents’ social relationships with other people in the hospital, such as other parents and their children. The experience of having a child who develops cancer is challenging for parents; however, they were able to cope with this difficult situation with the support of other parents and children. When parents opened their hearts to one another, they became more open-minded and trusting toward physicians. Through good long-term relationships with physicians, parents developed a sense of security and became receptive to the physicians’ advocacy of cancer therapy.
Children with cancer are increasingly surviving throughout adolescence and adulthood. Therefore, such children and their parents face complex challenges regarding physical and social functions after treatment. 7 In the present study, we found that the rich human relationships Japanese parents developed with other parents and their children (even after hospital discharge and during follow-up) permitted an intimate reciprocity and generated a sense of peace and stability during the follow-up period. More investigation is needed on the nature of parental experiences of their children’s long-term care.
We conducted the study in 2 hospitals in northern Japan. The institutions are very similar in terms of physical distance, the quality of care, and the physicians who provide cancer treatment; therefore, the research environment was consistent throughout the study period. Restricting the research to these 2 sites allowed us to obtain consistent data throughout the consecutive observations. However, these qualitative findings do not necessarily represent all parents of children receiving cancer therapy in Japan. Long-term studies with larger samples conducted at multiple sites are needed to confirm the hypotheses and findings presented here. Such studies would enable us to study differences between families of children with different types of hematologic cancer and to compare families of children with hematologic cancer with those of children with non-hematologic cancer. In this study, we noticed a broad difference between families of children with different types of hematologic cancer. The families of children with acute myeloblastic leukemia developed more intensive social relationships, such as exchanging information with others over extended periods and developing mindful relationships that fostered shared decision-making, compared with families of children with other types of hematologic cancer. However, we were unable to analyze such differences owing to the very small number of cases in each diagnostic category. Given the scope of the issue, further research is needed to develop the theory and practice of parental shared decision-making in pediatric cancer therapy.
Conclusions
Reciprocal relationships and a sense of solidarity among parents during their children’s cancer therapy in the hospitalization and follow-up periods positively affected parental participation and the development of shared decision-making. A consideration of individual parents and relationships among parents of children with cancer is essential to improve shared decision-making in the clinical practice of pediatric cancer.
Author Contributions
All authors contributed to the project. R.M. and H.T. jointly conceived the study, and T.H., M.Y., T.M., K. Ig., K. Ie., A.T. and Y.S. helped with the acquisition, analysis, or interpretation of data for the work. R.M. drafted the manuscript and H.T., M.Y., K. Ig., T.H. and T.T. critically revised it for scientific quality. K. Ie., A.T., and Y.S. made additional contributions. H.T., T.H., M.Y. and T.T. supervised the study processes. All authors read and approved the final manuscript.
Footnotes
Acknowledgements
We thank Diane Williams, PhD, and Melissa Leffler, MBA, from Edanz (
) for editing the English text of a draft of this article. The contents of the article 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.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by JSPS Grant-in-Aids for Scientific Research 18K02487, 21K02409, and Sapporo Medical University Grants for Programs Promoting Academic Advancements 1900048, 2000192, and 2100207. R.M. has received research grants from JSPS and Sapporo Medical University.