Towards fear-free hospital visits

An application empowering children with Congenital Heart Defects and their parents 

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Abstract

Children with a Congenital Heart Defect (CHD) need to visit the outpatient clinic regularly their whole lives, often starting from birth. These hospital visits are frequently accompanied by feelings of anxiety and fear, which can have a detrimental impact on a child’s life. In collaboration with the Hospital Hero Foundation and the Willem-Alexander Children’s Hospital, the aim of this project was to design an intervention that reduces children’s feelings (aged four to ten) of fear and anxiety during outpatient visits to the paediatric cardiology department.

Employed Methods
Throughout the project, the following methodologies were employed:
1. Literature research exploring the background of paediatric hospital-related anxiety and fear, and existing anxiety-and-fear-reducing strategies.
2. Interviews with children (with and without CHD), parents, and paediatric healthcare workers to map the current situation.
3. In-depth observations of the current context of an outpatient visit to the cardiology department.
4. The facilitation of creative sessions to generate ideas and concepts, ultimately resulting in the final design.

Home-Based Preparation
Home-based preparation was chosen as the leading fear-and-anxiety-reducing strategy. This strategy focuses on providing paediatric patients with information prior to their hospital visit. Due to the developmental and cognitive levels of the defined age group, the responsibility of home-based preparation lies with the caregivers/guardians of the patients. The following main research question was defined: How can design support children (between the ages of four and seven) and their parents in the home-based preparation process of an outpatient visit to the paediatric cardiology department?

Research Outcomes
Exploring the current preparation touchpoints, practised preparation methods, and the hospital experience from the child’s perspective resulted in the following summarised research outcomes:
• Every paediatric patient and their situation is unique. As a result, every child experiences an outpatient visit differently. Therefore, customised preparation is required.
• Parents encounter barriers during the home-based preparation of their children. Existing preparation touchpoints, including the Hospital Hero application, do not accommodate these barriers.
• Preparation of children should contain context-specific details and focus on sensory stimuli.

Intervention
Based on the research outcomes, a home-based preparation approach was defined. Context-specific triggers of fear and comforting elements were mapped and selected as preparation content. This resulted in the design of an online module that can empower children with CHD and their parents with home-based preparation. The online module was evaluated with parents and healthcare workers and shows promising results. Recommendations regarding improvements and implementation are provided.