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Alleviating anxiety in children with cancer facing radiotherapy: The creation of a serious game
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Pediatric oncology research with a special focus on side effects.ORCID iD: 0000-0001-7242-5559
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Description
Abstract [en]

Children undergoing radiotherapy (RT) can experience anxiety, and explaining the procedure through a serious game could be a means to alleviate anxiety. Children have the right to take part in research that concerns them. Through co-creation stakeholders can be part of the process and thereby ensure that the developed product is suitable for the end users. The overarching aim was to investigate the developmental process of a serious game about RT, with a focus on the influence of co-creation, the feasibility of the game, and the game’s effects on self-rated anxiety by children undergoing RT.

The thesis consists of four studies, where the first three describes the developmental process of the serious game from different aspects. Study I describes the children’s and their parents’ contributions to the game development based on data from interviews, audio recordings from workshops, and filmed gameplay. Nine children participated, 7 to 10 years old. Study II describes the experiences of seven parents who participated in the first study through interviews. Study III consist of interviews made with thirteen researchers, game designers and hospital staff. The interviews describe the participants’ experiences of taking part in the developmental process of the game. In study IV, reach and acceptability of the game was tested through a feasibility study at one clinic. . It was a randomized pilot, waiting list based study where 22 children participated. Analyses were performed by thematic analysis (Study I and III), content analysis (Study II) and statistical calculations (Study IV).

The results showed that every participant involved in the development of the game contributed to the process. The method used in study I can be applied by researchers to co-create serious games with children. The children were active participants and had a consulting and informative role in the development, and their participation led to numerous changes. The interdisciplinary work was challenging but with ample time and an open climate it worked. A majority of children reported anxiety at the start of RT. In conclusion, the children’s participation impacted the game’s design and its content. The children’s abilities to participate in workshops was affected by their disease. Not all of the feasibility criteria set for study IV were reached. There were too few participants enrolled in the study to conclusively answer if the game had an effect on self-reported anxiety.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2023. , p. 74
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1994
Keywords [en]
anxiety, game design, participatory design, pediatric oncology, psychological preparation, proton radiotherapy, serious game, interdisciplinary research
National Category
Medical and Health Sciences
Research subject
Medical Science
Identifiers
URN: urn:nbn:se:uu:diva-515060ISBN: 978-91-513-1959-9 (print)OAI: oai:DiVA.org:uu-515060DiVA, id: diva2:1807941
Public defence
2023-12-15, sal IX, Universitetshuset, Biskopsgatan 3, Uppsala, 09:15 (English)
Opponent
Supervisors
Available from: 2023-11-22 Created: 2023-10-29 Last updated: 2023-11-22
List of papers
1. Co-creation of a Serious Game About Radiotherapy: Participatory Action Research Study With Children Treated for Cancer
Open this publication in new window or tab >>Co-creation of a Serious Game About Radiotherapy: Participatory Action Research Study With Children Treated for Cancer
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2022 (English)In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 9, no 2, article id e34476Article in journal (Refereed) Published
Abstract [en]

Background: Children with cancer who have to undergo radiotherapy can experience fear, because they have no prior knowledge of the treatment. One way of teaching children about the treatment and reducing their fear is to prepare them for it through serious games. Involvement of the end user in the design process within medicine is a way of ensuring that the product being developed will fit the intended user.

Objective: The aim was to outline the contributions made by children and their parents through participatory action research when designing a serious game about radiotherapy.

Methods: By means of participatory action research, children and their parents participated in the development of a serious game about radiotherapy. Nine children (7-10 years old) were included, each with an accompanying parent. A qualitative approach was used that included interviews and participant observation. Six rounds of iterative development process were used with the children and their parents. Meetings with the children were held either face-to-face or online. Each round resulted in a list of suggestions for changes to the game. A thematic analysis was performed based on the list of proposed changes, underpinned by all gathered data, to highlight how the children’s participation changed the game.

Results: Two main themes were identified. The first theme was “The children’s participation was affected by their health and treatment” and included the following subthemes: “an opportunity to share emotions and perceptions of radiotherapy” and “the possibility to participate was affected by the severity of the disease.” The second theme was “participation allowed becoming an active part of game development” and included the following subthemes: “the opportunity to express sentiments about the game,” “the emergence of a playable game through the children’s contributions,” and “the necessity of understanding the text.”

Conclusions: The method used in this study made the children active participants, and our results suggest that this method can be used by health care researchers to cocreate serious games with children. It is necessary to inform the children involved that the process takes time, and that the process can be altered to allow as much participation as possible without placing a burden on them. The children’s illness affected their possibility to take part; thus, it is crucial to accommodate the children’s needs when conducting similar studies. The parents’ participation facilitated the meetings for their children, even though their involvement in the game design was negligible.

Place, publisher, year, edition, pages
JMIR PublicationsJMIR Publications Inc., 2022
Keywords
children, participatory action research, game design, radiotherapy, education, supportive care, oncology
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-476506 (URN)10.2196/34476 (DOI)000989770500015 ()35639467 (PubMedID)2-s2.0-85132035308 (Scopus ID)
Available from: 2022-06-10 Created: 2022-06-10 Last updated: 2024-12-03Bibliographically approved
2. Parents' experiences of having their children take part in participatory action research creating a serious game about radiotherapy
Open this publication in new window or tab >>Parents' experiences of having their children take part in participatory action research creating a serious game about radiotherapy
2023 (English)In: Radiography, ISSN 1078-8174, E-ISSN 1532-2831, Vol. 29, no 1, p. 95-100Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Radiotherapy (RT) is one of several treatment modalities used for children diagnosed with cancer. Several studies have designed interventions aimed to alleviate the stress that can occur in conjunction with RT. To include children in the design of interventions is rare and dependent on the parents giving consent to participation in research on their children's behalf. The aim was to illuminate, from the parents' perspective, the experience of their children being part in the co-creation of a serious game and their previous experiences of RT.

METHODS: Ten parents of children taking part in a participatory action research study of the development of a serious game were invited to an interview and seven parents consented. An inductive, manifest content analysis was performed.

RESULTS: The analysis resulted in an overarching theme: Parents' pre-understanding from their child's cancer treatment created a sensitivity to their child's wishes and a willingness to contribute to science. Four categories are presented: Intrinsic factors influenced the intent to participate, Extrinsic factors that had an effect on participation, Parents role in the game development, and Radiotherapy impinged the child and the parent.

CONCLUSION: To be able to pay it forward to healthcare and other families with a child diagnosed with cancer was a contributing factor for parents' willingness to consent to participation after their children had undergone RT, especially since their children wanted to do so. Parents indicated interest in the developmental process and in following their children being part of the creation of a serious game about RT.

IMPLICATION FOR PRACTICE: To understand why parents allow their children to participate in studies creates opportunities for the research community to structure studies that facilitate participation.

Place, publisher, year, edition, pages
Elsevier, 2023
Keywords
Childhood cancer, Parents' experiences, Participation, Qualitative method, Radiotherapy, Serious game
National Category
Nursing Pediatrics
Identifiers
urn:nbn:se:uu:diva-490772 (URN)10.1016/j.radi.2022.10.005 (DOI)000886056400001 ()36327521 (PubMedID)
Funder
Swedish Childhood Cancer Foundation, KP2017-0004Swedish Childhood Cancer Foundation, KP2020-0010
Available from: 2022-12-14 Created: 2022-12-14 Last updated: 2023-10-29Bibliographically approved
3. Behind the scenes of the development of a serious game for health for children: An interdisciplinary interview study exploring perspectives from game designers, researchers, and experts from the field of hospital care
Open this publication in new window or tab >>Behind the scenes of the development of a serious game for health for children: An interdisciplinary interview study exploring perspectives from game designers, researchers, and experts from the field of hospital care
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(English)Manuscript (preprint) (Other academic)
Abstract [en]

It is considered advantageous to adopt an interdisciplinary approach when creating serious games in the sphere of health practice. However, different fields have reported that interdisciplinary work is challenging. Yet, the literature is scarce regarding how participants within health research have experienced collaborative research. In 2019 and 2020 three teams worked together to produce a serious game for children undergoing radiotherapy. The game was designed for children aged 5-14 years. The aim of this study was to describe the experiences of the participants in the teams from the production phase of a serious game about radiotherapy. Thirteen in depth interviews were carried out with members from all three teams. The teams included game designers, a research team, and an expert team. The latter consisted of a play therapist, a pediatric nurse, and radiation oncology nurses. A reflective thematic analysis was performed where one main theme and four subthemes were formulated. The main theme was: A learning experience during the participatory process. The subthemes were: (1) New insights were established due to the collaboration, (2) Games give the impression of being easy, yet are complex to produce, (3) The amount of time spent meeting in the teams was beneficial to the experience, and (4) The impact of having confidence in the game that was designed. In conclusion, knowledge expansion arose on several levels during the production phase. Having time and building trust in team constellations are significant factors in achieving a productive and favorable/beneficial experience for participants. Further, confidence in the end product could be a contributory factor for participants continuing to work and the understanding of the complexity of the evolving process.

Keywords
Interdisciplinary research, Qualitative method, Radiotherapy, Serious game
National Category
Other Engineering and Technologies Information Systems, Social aspects
Research subject
Medical Science
Identifiers
urn:nbn:se:uu:diva-515063 (URN)
Available from: 2023-10-25 Created: 2023-10-25 Last updated: 2025-02-18Bibliographically approved
4. Acceptability of a Serious Game About Proton Radiotherapy Designed for Children Aged 5 to 14 Years and Its Potential Impact on Perceived Anxiety: Feasibility and Randomized Controlled Pilot Trial
Open this publication in new window or tab >>Acceptability of a Serious Game About Proton Radiotherapy Designed for Children Aged 5 to 14 Years and Its Potential Impact on Perceived Anxiety: Feasibility and Randomized Controlled Pilot Trial
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2024 (English)In: JMIR Serious Games, E-ISSN 2291-9279, Vol. 12, article id e54082Article in journal (Refereed) Published
Abstract [en]

Background: Children who are going to undergo radiotherapy have displayed fear and anxiety. Therefore, a web-based serious game was developed as a psychological preparation to investigate if it could affect anxiety levels. In an earlier stage, children with experience of radiotherapy had been part of the developmental process.

Objective: The study aimed to investigate the feasibility in terms of reach, usability, and acceptability of a serious game about proton radiotherapy and to pilot that it did not increase anxiety levels in children aged 5 to 14 years undergoing radiotherapy.

Methods: The design was a randomized controlled pilot trial with predefined feasibility criteria. In total, 28 children were assessed for eligibility, and 23 met the inclusion criteria. They were consecutively randomized into 1 of 2 study arms. One child was excluded after randomization. If randomized into arm 1, the children received the intervention before treatment started. Children in arm 2 were treated as controls. Questionnaires with fixed answers were used to assess anxiety levels (an adapted version of the State-Trait Anxiety Inventory for Children) and experiences of gameplay (an adapted version of Player Experience of Need Satisfaction [PENS]). The children were asked to answer questionnaires at 5 different measurement occasions during their radiotherapy treatment.

Results: In arm 1, age ranged from 5 to 13 (mean 8.4, SD 2.4) years. In arm 2, age ranged from 5 to 11 (mean 7.6, SD 2.3) years. The sample consisted of 15 girls and 7 boys. The feasibility criterion that the children should play the game for 20 minutes or more was not met. Mean playtime for children in arm 1 was 32.1 (SD 23.8) minutes, where 18 children had played for at least 15 minutes. The criterion that 70% (n=16) or more of the participants should return all of the questionnaires was not met; however, more than 73% (n=16) returned the PENS questionnaires. The State-Trait Anxiety Inventory for Children was returned by 73% (n=16) on day 0, 77% (n=17) on day 1, 82% (n=18) on day 3, 82% (n=18) on day 6, and 86% (n=19) on day 15.

Conclusions: All feasibility criteria set for the study were not met, suggesting that adaptions need to be made if a future study is to be undertaken. Further, the analysis revealed that there was no indication that playing increased the children’s self-reported anxiety. The PENS questionnaire adapted for children showed promising results regarding player satisfaction when using the serious game. When studying children with severe conditions and young age, 5 measurement occasions seemed to be too many. Measuring both player satisfaction or experience and knowledge transfer would be preferable in future studies.

Trial Registration: ClinicalTrials.gov NCT04728555; https://clinicaltrials.gov/study/NCT04728555

Place, publisher, year, edition, pages
JMIR Publications, 2024
Keywords
anxiety, feasibility, pediatric oncology, psychological preparation, radiotherapy, RCT, serious game
National Category
Pediatrics Applied Psychology Human Computer Interaction Cancer and Oncology
Research subject
Medical Science
Identifiers
urn:nbn:se:uu:diva-515110 (URN)10.2196/54082 (DOI)001326821200001 ()39312188 (PubMedID)
Note

Title in the list of papers of Catarina Cederved's thesis: Acceptability and potential impact on perceived anxiety of a serious game about radiotherapy in children aged 5 to 14 years: A feasibility and randomized controlled pilot trial

Available from: 2023-10-26 Created: 2023-10-26 Last updated: 2024-10-22Bibliographically approved

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