The Added Value of Pain Science Education for Children Living Beyond Cancer (PANACEA): Co-creation
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 12
- 试验地点
- 2
- 主要终点
- Satisfaction with the co-created intervention
研究概览
简要总结
A pain science education (PSE) intervention for children (8-12y) living beyond cancer (CBC) will be developed through a co-creational approach with CBC, their parents and pediatric oncology clinicians. The study will be guided by the Intervention Mapping Protocol.
详细描述
PARTICIPANT RECRUITMENT STRATEGY
Co-creation is a bottom-up approach directly involving the end-users in developing the intervention. For the co-creation of the PSE intervention, 3 groups will be formed: children (8-12yo) living beyond cancer (CBC), their parents, and pediatric oncology clinicians. For each group, 6 to 8 participants will be recruited.
Using purposeful sampling, CBC and their parents will be recruited through various ways, including through patient lists of the participating hospitals (University Hospital Brussels and University Hospital Ghent), by convenience sampling (e.g. research team's networks, social media calls), and through snowball sampling (i.e. participating child-parent dyads encourage other dyads). Taking into account the cognitive and emotional development of children, the age range of CBC is set at 8-12y to restrain wide variation in developmental stage.
Pediatric oncology clinicians (e.g., physicians, physiotherapists, nurses, psychologists, child life specialists, occupational therapists) will be recruited from the participating hospitals and through the research team's networks.
CBC, their parents, and pediatric oncology clinicians can only be included in the study if they meet the inclusion criteria and after written informed consent is obtained. All CBC, parents, and pediatric oncology clinicians will receive verbal and written information on all aspects of the study prior to consent for participation. CBC wishing to participate without a parent will not be excluded, but will still require parental consent.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Other
入排标准
- 年龄范围
- 8 Years 至 12 Years（Child）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Children living beyond cancer:
- •history of (any) cancer diagnosis
- •age 8-12y at the time of inclusion
- •<2y post-treatment completion (early survivorship phase)
- •fluently Dutch speaking and reading
- •having access to internet/computer (in order to complete online questionnaires)
- •signed informed consent form
- •Parents of children living beyond cancer:
- •fluently Dutch speaking and reading
- •having access to internet/computer (in order to complete online questionnaires)
- •signed informed consent form
- •Pediatric oncology clinicians:
- •currently employed as a physician, nurse, physical therapist, occupational therapist, psychologist, or child life specialist in pediatric oncology
- •fluently Dutch speaking and reading
- •having access to internet/computer (in order to complete online questionnaires)
排除标准
- •Children living beyond cancer:
- •presence of psychiatric disorders or severe intellectual disability
研究组 & 干预措施
Pediatric oncology clinicians
Clinicians (e.g. physician, nurse, physical therapist, occupational therapist, psychologist, child life specialist) currently employed in pediatric oncology.
干预措施: Concept Mapping (Other)
Children living beyond cancer
Children between 8-12 years with a history of any cancer diagnosis that are currently in the early survivorship phase (<2y post-treatment).
干预措施: Co-creation (Other)
Parents of children living beyond cancer
Parents of children (8-12 years) living beyond cancer.
干预措施: Co-creation (Other)
结局指标
主要结局
Satisfaction with the co-created intervention
时间窗: at the end of the last co-creation/concept mapping session, approximately 6 months
Information about satisfaction of stakeholders (i.e. children living beyond cancer, their parents, and pediatric oncology clinicians) with various aspects of the co-created PSE intervention (e.g., content, complexity, comfort, delivery, and credibility) will be assessed through a small self-developed questionnaire at the end of the last co-creation and concept mapping session. The items of the questionnaire will be based on the ultimately developed intervention and will also include an open-ended question assessing to what extent the developed PSE intervention is what they needed, with the opportunity to suggest alternative treatment content.
次要结局
- Ownership of the intervention development(at the end of each co-creation/concept mapping session, up to 6 months)
- Understandability of the co-created intervention(at the end of the last co-creation/concept mapping session, approximately 6 months)
- Empowerment with regard to the co-created intervention(at the end of the last co-creation/concept mapping session, approximately 6 months)
研究者
Emma Rheel
PhD, Principal Investigator
Vrije Universiteit Brussel