Co-creation of a Serious Game About Radiotherapy: Participatory Action Research Study With Children Treated for Cancer.

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.

How children in Sweden accessed and perceived information during the first phase of the Covid-19 pandemic.

AIM: To describe how children in Sweden accessed and perceived information about SARS-CoV2 and Covid-19 during the first phase of the outbreak. METHODS: This study is a substudy of an international cross-sectional online mixed methods survey examining elements of children's health literacy in relation to Covid-19. The survey included multiple-choice questions, open-ended questions and drawings and collected information from 50 Swedish children (7-12 years). Data were analysed concurrently on a descriptive level using statistics and content analysis. Quantitative and qualitative data, including the drawings, were considered equally important and resulted in six categories, illuminating how children accessed and perceived information about the pandemic. RESULTS: The survey showed that children accessed information mainly from school but also from TV. They preferred information from reliable sources. Children reported the information they accessed as easy to understand and it prompted them to ask new questions. They reported they knew a lot about the pandemic, for example, the potential danger to themselves and others and how to act to protect themselves and others. They perceived the pandemic as an intrusion on their lives. CONCLUSIONS: This study indicates that Swedish children between 7 and 12 years old were well informed about SARS-CoV2 and Covid-19 during the first phase of the pandemic. School was shown to be an important source of information. The children could explain how to act to protect themselves and others from becoming infected by the virus.

Staff's Experiences of Preparing and Caring for Children With Cancer and Their Families During the Child's Radiotherapy.

BACKGROUND: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child's RT are sparsely described. OBJECTIVE: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child's RT. INTERVENTION/METHODS: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis. RESULTS: The analysis revealed 5 categories summarizing the staff members' experiences. These include the following: experiences of various emotions; care for the child and the child's family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement. CONCLUSIONS: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential. IMPLICATIONS FOR PRACTICE: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

Children's experiences and responses towards an intervention for psychological preparation for radiotherapy.

BACKGROUND: Children can experience distress when undergoing radiotherapy as a reaction to being scared of and unfamiliar with the procedure. The aim was to evaluate children's experiences and responses towards an intervention for psychological preparation for radiotherapy. METHODS: A case control design with qualitative content analysis of semi-structured interviews and statistical analysis of anxiety ratings were used for evaluating a strategy for psychological preparation and distraction. Fifty-seven children aged 2 to 18 years and their parents participated - 30 children in the baseline group and 27 in the intervention group. Child interviews were performed and the child and their parents rated the child's anxiety. RESULTS: The intervention was most appropriate for the younger children, who enjoyed the digital story, the stuffed animal and training with their parents. There were some technical problems and the digital story was not detailed enough to fit exactly with various cancer diagnoses. Children described suggestions for improvement of the intervention. The ratings of the child's anxiety during radiation treatment showed no differences between the baseline group and the intervention group. CONCLUSIONS: The children of all the age groups experienced their interventions as positive. The strength of the intervention was that it encouraged interaction within the family and provided an opportunity for siblings and peers to take part in what the child was going through. Future research on children's experiences to interventions should be encouraged. The intervention and the technical solutions could improve by further development. TRIAL REGISTRATION: The study design was structured as an un-matched case-control study, baseline group vs. intervention group. TRIAL REGISTRATION: ClinicalTrials.gov NCT02993978 , Protocol Record 2012-113-31 M. Retrospectively registered - 21 November 2016.

Parents' Experiences and Responses to an Intervention for Psychological Preparation of Children and Families During the Child's Radiotherapy.

The aim of this study was to evaluate parents' experiences and responses to a systematic intervention for psychological preparation of children and families during the child's radiotherapy (RT) treatment. In this case-control study at 3 pediatric RT centers, an intervention with a preparatory kit, including age-adjusted information on tablets, gift of a stuffed toy or a pair of headphones, a parent booklet, and toy models of the computed tomography and RT machines was implemented. For evaluation, a mixed methods data collection was conducted. A total of 113 parents of children undergoing RT were included-n = 59 in the baseline group and n = 54 in the intervention group. Health-related quality of life was rated low, but parents in the intervention group expressed less anxiety after the RT compared with the baseline group. They found information suitable for their young children, siblings, and friends were involved and the toy models were used for play. Parents expressed positive feelings due to close interaction with staff and each other within the family. The solutions developed within a human-centered design approach and shaped as a systematic family-centered strategy contributed to parents understanding and coping with the child's RT.

Comforting measures described by staff working in paediatric units.

Aim Children with cancer identify staff members, who work with them in paediatric units, as their most important comforters. This study aimed to shed light on how those staff members deliver this comfort. Methods Semi-structured interviews were performed and the content then analysed. Nine families (n=9) and eight staff members (n=8) participated in the study. Findings The staff described caring for the children and the whole family. They implemented certain comforting measures with the child, and described how they provided support to parents. Staff described how they felt comforted by relating to the children they were caring for. Conclusion Staff working in paediatric units develop good relationships with children and parents and comfort them using methods described in the literature. The quality of the staff's positive relationships with the children marked all their actions.

It Is Tough and Tiring but It Works--Children's Experiences of Undergoing Radiotherapy.

Approximately 300 children ages 0 to 18 are diagnosed with cancer in Sweden every year, and 80 to 90 of them undergo radiotherapy treatment. The aim was to describe children's experiences of preparing for and undergoing radiotherapy, and furthermore to describe children's suggestions for improvement. Thirteen children between the ages of 5 and 15 with various cancer diagnoses were interviewed. Data was analyzed using qualitative content analysis. The findings revealed five categories: positive and negative experiences with hospital stays and practical arrangements; age-appropriate information, communication, and guidance to various degrees; struggle with emotions; use of distraction and other suitable coping strategies; and children's suggestions for improvement during radiotherapy. An overarching theme emerged: "It is tough and tiring but it works". Some key areas were: explanatory visits, the need for information and communication, being afraid, discomfort and suffering, the need for media distraction, dealing with emotions, and the need for support. A systematic, family-centered preparation program could possible help families prepare and individualized distraction during radiotherapy could contribute to reducing distress. Further studies with interventions could clarify successful programs.

Children Undergoing Radiotherapy: Swedish Parents' Experiences and Suggestions for Improvement.

Approximately 300 children, from 0 to 18 years old, are diagnosed with cancer in Sweden every year. Of these children, 80-90 of them undergo radiotherapy treatment for their cancer. Although radiotherapy is an encounter with advanced technology, few studies have investigated the child's and the parent's view of the procedure. As part of an ongoing multicenter study aimed to improve patient preparation and the care environment in pediatric radiotherapy, this article reports the findings from interviews with parents at baseline. The aim of the present study was twofold: to describe parents' experience when their child undergoes radiotherapy treatment, and to report parents' suggestions for improvements during radiotherapy for their children. Sixteen mothers and sixteen fathers of children between 2-16 years old with various cancer diagnoses were interviewed. Data were analyzed using content analysis. The findings showed that cancer and treatment turns people's lives upside down, affecting the entire family. Further, the parents experience the child's suffering and must cope with intense feelings. Radiotherapy treatment includes preparation by skilled and empathetic staff. The parents gradually find that they can deal with the process; and lastly, parents have suggestions for improvements during the radiotherapy treatment. An overarching theme emerged: that despair gradually turns to a sense of security, with a sustained focus on and close interaction with the child. In conclusion, an extreme burden was experienced around the start of radiotherapy, though parents gradually coped with the process.

Children undergoing cancer treatment describe their experiences of comfort in interviews and drawings.

Children with cancer often undergo a long course of treatment, described as painful, and associated with feelings of discomfort and need of comfort. The aim of this descriptive interview study was to investigate how children, aged 3 to 9 years, undergoing cancer treatment describe their experience of comfort. The children were interviewed and asked to make drawings. Data were content analyzed and four themes were constructed--enduring discomfort, expressing discomfort, finding comfort, and comforting others. The findings show that the children endured discomfort during treatment, and were sometimes able to express it. They found comfort especially from their family and from hospital staff. The children also described that they comforted family members. The findings are in accordance with previous research about children's and adults' accounts of comfort. An incidental finding is that parents were surprised when they listened to the children's accounts of their experience of discomfort and comfort and achieved a better understanding of their children.

Parents' experiences of what comforts them when their child is suffering from cancer.

The aim of the study was to describe parents' narratives concerning what they find comforting when they have a child suffering from cancer. Interviews were conducted with 9 parents--8 mothers and 1 father--of children aged 3 to 9 years who were admitted to a pediatric oncology ward and had undergone their first treatment. The findings showed that the parents derived comfort from being close to their child, perceiving the child's strength, feeling at home in the ward, being a family and being at home, and receiving support from their social network. Comfort experienced in communion with the child and others became important and helped the parents build a new normality perceived as being at home in life despite all their difficulties. Within the frame of communion, the parents seemed to experience moments of hope for their child's recovery and survival.

Narratives of children with chronic illness about being comforted.

The aim of the study was to examine how children with chronic illnesses narrate their experience of being comforted in hospital. During interviews, seven children, 4-10 years old described their experiences and made drawings. Thematic content analysis revealed following themes: being physically close to one's family, feeling safe and secure, staff being there for the children, and children being there for parents and siblings. Mother was identified as the most important comforter. The findings suggest that trusting in the staff's knowledge and professional skills is a prerequisite for children to feel "at home", and safe in hospital. Being close to one's family is even more important.