Parents' experiences of having their children take part in participatory action research creating a serious game about radiotherapy.

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.

Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents.

PURPOSE: VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents. METHODS: Patients aged 8-17 years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015-2019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives, t tests and multivariable analysis. Results were compared with norm groups and reference samples. RESULTS: The questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was M = 80.4, comparable to children with asthma (M = 80.2) and diabetes (M = 79.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children's HRQoL and psychological well-being were identified. The parents' self-reports of anxiety and depression were comparable to non-clinical samples. CONCLUSIONS: Although children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association.

Young children with severe congenital malformations (VACTERL) expressed mixed feelings about their condition and worries about needles and anaesthesia.

AIM: Our knowledge of the perceptions that children with severe congenital malformations have of their health, treatment and how to improve hospital care is limited. This study focused on patients with vertebral defects, anal atresia, cardiac defects, tracheo-oesophageal fistula, renal anomalies and limb abnormalities (VACTERL). METHODS: We interviewed 10 children aged five to eight years with VACTERL association who were treated in a Swedish tertiary paediatric surgical centre, using a computer-assisted technique called In My Shoes. The interviews were analysed by qualitative content analysis. RESULTS: The children described their awareness of their health history and said they felt proud but different due to their physical dysfunction. They were happy to visit the hospital to meet familiar staff, but expressed negative feelings about missing normal life. They were afraid of needle-related procedures and not wakening up after anaesthesia. Various ways of coping with difficult situations were expressed, and suggestions to improve hospital care were voiced. CONCLUSION: Careful follow-up of these children by multidisciplinary teams is crucial to optimise their health and functional status. Fear of medical procedures may be reduced by carefully delivered information, listening to the children, providing continuity of care and creating individual care strategies.

Findings on how adolescents cope with cancer--a matter of methodology?

OBJECTIVES: The various conclusions drawn from previous studies on how adolescents cope with cancer might partly be explained by methodological issues. The aim was to explore how adolescents recently diagnosed with cancer report that they cope with disease- and treatment-related distress in response to closed- and open-ended questions, respectively. METHODS: Adolescents diagnosed with cancer 4-8 weeks ago (N=56) answered closed- and open-ended questions over the telephone about which coping strategies they use to cope with physical concerns, personal changes, feelings of alienation, and worries. RESULTS: In response to closed-ended questions, most adolescents reported using emotion-focused coping (Accepting and Minimising) while, in response to open-ended questions, meaning-based (i.e. Positive thinking) and problem-focused (i.e. Problem solving) coping were most often mentioned. A majority reported using Minimising and Seeking support in response to closed-ended questions, but very few adolescents mentioned using these strategies in response to open-ended questions. CONCLUSIONS: Adolescents' reports of how they cope with disease- and treatment-related distress vary depending on antecedent closed- and open-ended questions. Responses to closed-ended questions appear to be more indifferent to aspects of distress than responses to open-ended questions. Strategies representing meaning-based coping should be included in future studies investigating how adolescents recently diagnosed with cancer cope with disease- and treatment-related distress.