"Healthcare APPlication for Children and Young People With Neuromotor Disabilities": a Digital Tool to Promote Integrated Pediatric Rehabilitation Care for Children and Young People With Disabilities and Their Families: a Mixed-methods Usability-acceptability-impact Study (HAPPY)
试验速览
- 阶段
- 不适用
- 状态
- 招募中
- 入组人数
- 20
- 试验地点
- 1
- 主要终点
- Usability of the app
研究概览
简要总结
The goal of this observational multicentric mixed methods study is to evaluate if the digital application "Deneo Kid", co-designed in France with adolescents, families, rehabilitation providers and researchers, can improve the coordination and quality of rehabilitation care for children and young people with neuromotor disabilities. The main questions it aims to answer are whether the application is easy to use for children, their families, and rehabilitation professionals, is acceptable, whether it helps families and professionals provide more integrated, including more family-centered and coordinated care, and whether it affects communication, relationships, and time and costs related to care coordination.
Rehabilitation providers, families and adolescents ≥ 16 years old will use the "Deneo Kid" secured application for 3 months to share information, track care goals, and communicate with the rehabilitation care team. They will complete short surveys before and after using the application to report on usability, acceptability, quality, and the impact on rehabilitation care. Participants will also take part in interviews or focus groups to share their experiences with the application.
The study will include 20 children, adolescents and young people aged 2 to 25 years living with neuromotor disabilities, followed-up in rehabilitation, their parents or legal guardians, and at least two rehabilitation professionals per child. Four rehabilitation centers in France will participate to the study. Researchers will observe how the application is used in these different rehabilitation settings and collect information on usability, care coordination, user experience, and the time and cost involved in managing care. The results will help determine whether "Deneo Kid" could support better coordination and family-centered rehabilitation for children and young people with disabilities and provide a foundation for larger future studies, to evaluate the effectiveness of the application.
详细描述
Context Chronic diseases are increasing, and healthcare is becoming more complex. Integrated care-that is, care that is coordinated, person-centered, and continuous-is essential to improve efficiency. In pediatric rehabilitation, coordination between the child, their family, and professionals working in hospitals, rehabilitation centers, integrated healthcare and social settings, outpatient settings, private practice is particularly critical. Effective coordination helps promote the child's participation in all areas of life and supports them through major life transitions, such as starting school or moving from adolescence to adulthood.
In this context, the digital application "Deneo Kid" was developed at the University Hospital of Brest through a partnership between the company Deneo, which already developed a shared portal for adult sports rehabilitation, and the BEaCHILD research team, specialized in child disability. It was designed based on qualitative studies exploring the needs of parents of children with disabilities (PitchRehab, supported by the Ildys Foundation), young people with disabilities (KidChildRehab, supported by the University Hospital of Brest), and professionals in rehabilitation, education, and leisure (ProChildRehab, supported by the University Hospital of Brest). "Deneo Kid" aims to connect children, their families, and rehabilitation professionals around a coordinated care and life plan centered on their needs, in order to promote integrated pediatric rehabilitation using a digital tool.
Funding from the Fondation de l'Avenir has been obtained to conduct a usability and impact study of the application. Additional funding has been requested from IReSP to explore the social determinants of adoption and the economic impact of the application with the support of a sociologist and a health economist from IMT Atlantique, as part of the same usability study.
To achieve this, the "Deneo Kid" application will be tested for 3 months with a cohort of users composed of 20 "teams," each including one child living with a neuromotor disability (cerebral palsy, neuromuscular disease, neurodevelopmental disease with motor impairments, etc.), their parents/legal guardians, and at least two rehabilitation professionals involved in their rehabilitation. Participants will be recruited from four pediatric rehabilitation centers in France. A mixed-methods approach will be used, including quantitative data collection and analysis (pre- and post-intervention questionnaires for users, anonymized application usage data collected via Deneo, and costs associated with coordination with and without the application) and qualitative data collection and analysis (interviews and focus groups before and after the study, digital journals, and direct observations).
This first small-scale experimental study will provide a better understanding of the usability, acceptability and impact of "Deneo Kid" across different pediatric rehabilitation settings and the factors contributing to its success. It will also provide a solid foundation for future larger-scale studies, contributing to improvements in the quality and efficiency of pediatric rehabilitation care.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 2 Years 至 25 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- 未提供
排除标准
- •Refusal to participate.
结局指标
主要结局
Usability of the app
时间窗: from enrollment (beginning of use of the app) to the end of the application test at 3 months
Usability of the "Deneo Kid" application from the perspective of all end-users (adolescents, families, professionals)
次要结局
- Acceptability(From enrollment (beginning of the use of the app) to the end of the use of the app at 3 months)
- Impact on integrated care(From enrollment (beginning of the use of the app) to the end of the use of the app at 3 months)
研究者
Marietta KERSALE
OT, MSc, PhD student
University Hospital, Brest