An ongoing WE: A focused ethnographic study of the relationship between child and hospital clown during recurrent pain‐related procedures and conditions

Abstract Aim This study explored the interaction between child and hospital clown during recurrent hospitalizations for repeated pain‐related procedures and conditions. Background Despite improvements in the management of pain in hospitalized children, procedural pain in particular is a common experience for hospitalized children, and they continue to report undertreated pain. Hospital clowns are widely used as a nonpharmacological intervention in hospitalized children. Little research has examined the influence of hospital clowns during recurrent hospitalizations on repeated painful procedures. Design and methods Ethnographic fieldwork using focused ethnography was conducted. Data were collected during October–December 2017 using participant observation and informal interviews with children at one pediatric unit at a Danish university hospital. Data include 61 interactions between children aged 4–14 years and hospital clowns. The participants comprised 13 children undergoing recurrent hospitalizations. The data were coded using thematic analysis, and the research team verified the resulting themes. Results The overarching theme was defined as An ongoing WE , based on two identified themes, that is, Stronger in a WE and Hope in the WE . The WE was characterized by a responsive interaction between the child and clown, which evolved over the course of an ongoing relationship. Conclusion This study demonstrates how an ongoing WE was constructed with children during repeated painful procedures and conditions. Specifically, the study emphasizes the importance of developing a trusting relationship on the child's terms. Children seemed to experience enhanced coping with painful procedures during the recurring hospital clown encounters, thus reinforcing their competence and hope for coping with future painful procedures. These findings may improve psychosocial care for hospitalized children undergoing repeated painful procedures and conditions and may facilitate multidisciplinary initiatives, such as nurses’ advocacy for the inclusion of hospital clowns during recurrent hospitalizations for repeated painful procedures to ensure optimal pain management.


| INTRODUC TI ON
Despite improvements in the management of pain in hospitalized children, children continue to report unmanaged pain. [1][2][3] Procedural pain in particular is a common experience for hospitalized children. 2,3 Research has found high rates of pain among hospitalized children. 2,3 Children in long-term treatment for diseases such as cancer must undergo numerous potentially painful procedures related to treatment and care (e.g., venipuncture, nasogastric tube insertion, mobilization). 5 Many children describe such procedures and treatments as the most painful and distressing part of their disease. 6,7 Findings suggest that children repeatedly exposed to painful procedures experience more pain and have lower pain thresholds. 8 Thus, children experiencing untreated pain during repeated painful stimuli and negative previous experiences are at risk of increased levels of pain and negative psychological sequelae for subsequent procedures. 9,10 Moreover, the child's individual temperament, previous experiences, age and developmental level, and the social and contextual terms such as parent's role may influence the child's perception of pain. 11,12 Clinical guidelines on pediatric pain management 13,14 recommend inclusion of both pharmacological and nonpharmacological strategies.
Reviews also support various nonpharmacological psychological strategies tailored to the individual child. 15 Psychological interventions, especially using a multidisciplinary approach, can help reduce children's pain and distress. 15 Hospital clowns (referred to as clowns) can be seen as a complementary approach in pain management using distraction, humor, and imagery. [16][17][18] More specifically, clowns create forms of play that invite the individual child into an imaginative and safe relationship, which can support the child in potential stressful situations. [19][20][21] Previous research 22-24 on child-clown interaction during invasive procedures compared with standard care has been inconsistent concerning the impact of clowns on the experience of pain. Recent work by Kristensen et al. 4 showed a significant decrease in pain for acute hospitalized children aged 7-15 years undergoing venipuncture with the presence of a clown. The therapeutic clown role is described as one in which the clown establishes an empowering and supportive relationship with the child. 18,20 However, little research has explored interactions between clowns and hospitalized children. 18,20 Most current research focuses on one-time specific procedures. 19,25 There is a paucity of empirical evidence on the influence of interactions between children and clowns during recurrent hospitalizations, comprising repeated pain-related procedures and conditions. Therefore, the present study explored child-clown interactions during recurrent hospitalizations, comprising repeated painful procedures and conditions.

| Study design
An exploratory qualitative approach was used in order to provide knowledge of the interaction between the child and clown. The study design was guided by practical ethnographic principles 26,27 and focused ethnography. 28,29 Focused ethnography, which is defined as short-term and not continual, 29 is a suitable method when the research question focuses on well-defined concerns-in this study, the characteristics of the interaction between the child and clown in specific painful situations.

| Study participants
The study was performed in a pediatric ward located in a public university hospital in Denmark. The ward admitted hospitalized children with cancer and rheumatological conditions. The clowns were a part of the healthcare team and had collaborated with nurses and doctors for several years before this study was undertaken. The clowns had received a formal education, with training in acting as a hospital clown combined with an understanding of the medical conditions and behaviors characteristic of child patients. The clowns wore a red nose and colorful clothes. Overall, the strategies of the clowns included creating a relationship using a variety of strategies such as cognitive distraction, humor, and imagery, and articulation of the child's expression was a specific part of the approach. The clowns mostly worked together in pairs. They were present from three to four hours a day on weekdays. On a given day, the nurses recorded on a visible board which clowns were present and during what period of time. On the day before an encounter, the nurses informed the clowns about the child's condition, and they planned the visits together based on details such as the scheduled time of the child's procedure and the nature of the procedure. In this study, one clown (ID A) was present during all encounters. Table 4 outlines these encounters, providing demographic information as well as the number and characteristics of the encounters.
Children were included in the study if they had recurrent interactions with the clowns during different pain-related procedures and conditions (e.g., venipuncture, intramuscular injections, port-a-catheter access, nasogastric tubes, mobilization). In addition, encounters without a pain-related situation were carried out (as a part of establishing a relationship; see Table 4). The children may have had contact with the clowns prior to the study or they may establish contact from the beginning of this study period with the potential to follow the child during recurrent encounters. The presence of at least one parent and the ability to speak Danish or English was required. Children with less than two encounters with clowns and no painful procedures or conditions (e.g., venipuncture, intramuscular injections, port-a-catheter access, nasogastric tubes, mobilization) were excluded. The final sample comprised a total of 13 children aged 4-14 years. A total of 61 child-clown interactions were observed. Each child was assigned an identification number (Table 4).

| Data collection
The source of data collection was participant observation and informal interviews with children. [30][31][32] Data were collected consecutively between October 30 and December 13, 2017. The observations lasted approximately four to six hours a day. Predicting how many children would be having a painful procedure or condition in the observation period was not possible; therefore, the decision was to sample all children interacting with the clown who met the study's inclusion criteria. Based on nurses' knowledge of the individual child (e.g., plans for treatment and care, scheduled procedures), the nurses in the ward collaborated with the researcher by providing information on children that would potentially be included in this study.
Sampling was convenience based on the specific experience of interactions between the child and clown judged to be of interest. 28 Data collection was consecutive 33 and conducted through focused ethnographic observations and informal interviews with all children during the recurrent encounters.
Over the entire data collection period, grand-tour observations alternated with mini-tour observations, 27 because it was not known beforehand which children would be admitted on the days when the clown was present. However, the researcher followed the clowns on their scheduled days, observing, and interviewing children that met the inclusion criteria. The grand tour aimed to get an overview of the setting, the interaction with clowns, and how the ward was organized regarding the process with admission of children. The mini tour included the group of children followed over the entire fieldwork period with more than one encounter. The fieldwork focused on specific features such as place, actor, activities, object, time, goal, and feelings 27 in the interaction between the child and clown during recurrent encounters. The researcher had an insider perspective based on prior work experience as a nurse in a similar cancer ward, which facilitated the contact with children, parents, and the healthcare staff. Observing the child-clown interactions was considered the outsider perspective. Thus, the fieldwork involved a position between participation and observation that struck a balance between insider and outsider perspectives. 26,27 Conscious awareness of balancing between insider and outsider perspectives was established, for example, by wearing a nurse's uniform, assisting, and answering questions from children, parents, and nurses in an insider role. In other cases, the role of the outsider, as an observer at a distance, was predominant.
Informal interviews were conducted in a collaboration between child, clown, parents, and researcher immediately after the specific encounter or during the next encounter, by posing questions to the child referring back to the encounter, such as the following: "Tell me how you managed last time." During informal interviews with children, the use of creativity in a childlike, age-differentiated approach was regarded as enhancing the articulation of the child's perspective, 32 though the clown was in some cases involved in the dialogue concerning the articulation of the child's experience.
Handwritten scratch notes were completed during the fieldwork. Expanded field notes were prepared after the day's observation, using descriptions of speech and nonverbal behavior in order to facilitate the construction of the analysis process. 26 These field notes were typewritten verbatim. 27 In total, 75 hours of participant observations were conducted over 15 days, resulting in 43 pages of field notes.

| Ethical considerations
The study was approved by the pediatric administration at the university hospital and by the Danish Data Protection Agency (Journal no. 2008-58-0028; id: 2016-5). Approval from the ethics committee was not required according to Danish law. Consent was obtained from the clowns before data collection based on written and oral information about the study. Children and parents received information about the study, and their consent was obtained in the same session. All children, their parents, and clowns willingly participated.

| Data analysis
The analysis explored child-clown interactions during recurrent pain-related procedures and conditions. The analysis was based on a qualitative thematic approach and unfolded as a dynamic process including five phases. 35 Phase one comprised a thorough reading of the field notes to gain familiarity with the content. In phase two, initial coding was generated by organizing the entire data set into groups. In phase three, the research team was continuously involved in the sorting of codes and interpretation of the data, resulting in an overarching theme, two preliminary themes, and eight preliminary subthemes (Table 1). In phases four and five, a rereading of the entire data set was conducted. A review of the selected quotes was then conducted, discussed, and agreed upon in collaboration with all of the authors to ensure that the themes and subthemes fit in relation to data. 35 Accordingly, the preliminary subthemes were refined, consequently decreasing from eight to four. Finally, returning to the data, one of the two preliminary themes was further reclassified from For the next time to Hope in the WE. Thus, a change in hierarchy level and labeling of themes and subthemes took place, which was legitimized by a thorough inspection of the chosen data extracts, illustrated in Table 1. Tables 2 and 3 illustrate the relationship among themes, subthemes, and codes of the two themes: stronger in a WE and hope in the WE.

| Validity and rigor
The researcher's insider perspective might have resulted in unconscious anticipation of the likely experiences. However, familiarity with the specific situations may also have facilitated the motivation to remain present in these emotional situations. 26 To validate the interpretations of the participant observations, a form of member checking 35 was performed in a dialogue with some of the children, parents, involved nurses, and clowns with a focus on their perspective on the interaction. This dialogue was conducted on the specific day of the child-clown interaction or after the following encounter, respectively, to ensure a good fit between the researcher's and the participants' view of the observed situation. Credibility was further enhanced by continuous involvement of the research team in the analysis and interpretation.

| RE SULTS
The overarching theme, an ongoing WE, was based on two themes and four subthemes (see Table 1).
Overall, the participant observations suggested that the child and clown were related in an ongoing WE, characterized by a strong and close relationship that developed between the child and clown over time during repeated encounters. The WE represent a responsive child/clown interaction evolved during a continuous, mutually focused attention. Table 4 presents the demographics of the children and the number and characteristics of the encounters.

| Stronger in a WE
This theme concerns mutual interest and recognition, reflected by a responsive interaction between the child and clown. It covers the small, conscious steps taken by the clown when meeting the child in an attempt to establish a trusting relationship, tailored to the child's needs. Stronger in a WE is further specified in the two subthemes Initially, the clowns carefully asked for permission to enter the child's room, using direct or indirect contact (e.g., standing in the doorway without saying anything, asking directly whether the child wanted a visit) and waiting for the child's consent. This cautious approach was found whether it was the first encounter between child and clown or whether they had met before. The clown tailored the strategies depending on the individual child's situation and condition. Acknowledging the current state of the child sometimes resulted in postponing the encounter (e.g., the child asked the clown to return later that day or another day; the clown just said hello and went back later). Otherwise, the clown's cautious approach helped the child to place the pain in the background and to consequently be In the examples presented above, parents seemed to play an integral role; they were either explicitly involved by the clowns or

| Hope in the WE
The overarching ongoing WE theme focused especially on hope, which was related both to current and future painful experiences.
Moreover, the child's hope was related to the belief that the clown would help them in future encounters and the desire for the clown to do so. The recurrent feature of the relationship was that the child and the clown cared about each other, which gave the child a feeling of not being alone during the painful procedures or conditions. WE did it-your way" provided the child with a strategy for managing painful situations in the future, and the clown continued with the tailored approach to make the child aware of the individual strat- Children felt reassured in their belief that the clown would come again, and a specific strategy with the clown was often included in the child's wish for the next encounter. Additionally, clowns always expressed an explicit wish to meet the child again by ending the encounter with "See you again," providing the child with hope. This was exemplified by an encounter with an 8-year-old boy, who was undergoing a subcutaneous injection: When the subcutaneous injection was done, the clown said, "What about the port-a-cath access tomorrow? I heard from your mother that this is the worst thing for you." His mother nodded, and the boy said, "See you again tomorrow, and WE can play the song I like-the song we did today. Let's do this tomorrow" (ID 11).
As illustrated, the clowns facilitated the engagement of parents as partners. This was done by explicitly including parents in the encounters by verbalizing their role and, in terms of planning for the future, by asking them to become a part of the mutual plan to help their child (e.g, buy the chocolate bar; ID 8).
Hope in the WE refers to a mutual expectation and belief that the child and clown will meet again (See you again). This expectation and belief was conveyed by a relieved expression of hope, from the child and clown, for another encounter. The hope was supported during an evaluation of the current situation, pointing to the child's ability to manage future painful situations (WE did it your way).
Overall, the creation of hope in the WE showed the important role of the clown in maintaining a focus on the needs and the expressions of the individual child. The hope was invariably related to the child's and parent's expectations of help from the clowns, when managing current pain-related situations and future meetings. The children felt reassured during the interactions that the clown could be present and support them in the future as a friend. During an evaluation by the clown in which the clown actively involved the child, the hope for managing the next pain-related situation was made possible and continuity in the management strategies was ensured.

| D ISCUSS I ON
The aim of this study was to explore the characteristics of the interaction between the child and hospital clown during recurrent hospitalizations for repeated pain-related procedures and conditions. The study showed how interactions between the child and clown in an ongoing WE fostered a continuous, trusting relationship.
The relationship was reflected in two themes: Stronger in a WE and Every child experiences painful procedures and conditions in a different manner. 40 Additionally, the coping process is constantly changing and is thereby influenced by the child's previous experiences. 12 Thus, there is a need to be aware of the child's prior experiences, stressed in this study as the importance of a continuous relationship in a trusting, ongoing WE. The process of evaluation created awareness of the individual coping strategies, which seemed important for the child and were implemented in the following painrelated situations. In particular, hope in the WE presented during this evaluation may strengthen the child's competence in managing painful procedures and conditions.
Although children expressed worries concerning the future, they were helped by the identification of strategies compatible with the planned procedure and the certainty of the clown's presence in the future (expressed as "see you again"). The hope was expressed both as a specific wish for the clown to be present during the next procedure and as a more general hope for sharing important moments related to the pain-related challenges.

| Recommendations for improving nursing practice
The expressions of the child need to be heard and integrated into care for the child from the first encounter and maintained throughout subsequent encounters. The present findings underline the importance of establishing a continuous, trusting relationship in an ongoing WE on the child's terms, which can serve as a resource for improving the management of pain during painful procedures and conditions.
Nurses can advocate for the involvement of clowns during procedure-related pain and conditions for recurrent hospitalized children.
In addition, the approach and techniques used by the clown in establishing and maintaining an ongoing WE, represented by a continuous, responsive interaction, can inspire nurses to improve the child's management of pain-related procedures and conditions. Given the opportunity and time to establish a relationship with children undergoing these procedures and conditions on a recurrent basis, clowns can work together with nurses in caring for such children.

| Limitations
Only one ward was chosen for data collection, and this limited the scores over the encounter), however, was not done due to the type of interaction between child and clown. These perspectives were not included in this study and might have limited its insights, particularly regarding the underlying role of parents. Finally, interviews with the children and hospital clowns after or at the end of the study period could have provided insights into the long-term influence of the interaction with the clowns represented during an ongoing WE.
Participant observation can offer knowledge about children that cannot be obtained adequately through other methods. 41 However, video recording might have captured more details of the child-clown interaction. 42 Nevertheless, children with recurrent hospitalizations are a vulnerable group. An overriding concern for addressing the research question with minimal risk for the child and family 41 was the reason for not including video recordings.

| CON CLUS ION
This study has identified the meaning of an ongoing WE established with children during recurrent pain-related encounters with hospital clowns. The clown was found to be an important and close profes- This study provides useful insights into establishing a continuous, trusting relationship, represented in the overarching theme of an ongoing WE. The establishing and maintenance of an ongoing WE may improve the psychosocial care and management of pain for children undergoing recurrent pain-related procedures and conditions during recurrent hospitalizations. Thus, these findings may support and advance nursing care associated with procedure-related pain management. In addition, the study suggests avenues for multidisciplinary initiatives, such as nurses' advocacy for the inclusion of clowns during recurrent interactions as a means of ensuring best practices in managing recurrent pain-related procedures and conditions. Further research is required to investigate the long-term impact of clowns in this context, as well as the roles of parents and nurses in supporting child-clown interactions in painful situations.

CO N FLI C T O F I NTE R E S T
The authors have no conflicts of interest to declare.