Appreciation of a Child's Journey: Implementation of a Cardiac Action Research Project.

The aim of this paper is to provide an overview of the phases of the action research process involved in developing, implementing, and evaluating the Heart Beads program. The aim of the project is to enrich the hospital experience of children with cardiac conditions. Heart Beads involves children receiving unique beads specific to each cardiac treatment, procedure or event in recognition of their experiences, and endurance. An action research approach, involving a partnership between clinicians and researchers and emphasising the involvement of patients and their families, was used to guide the Heart Beads program. The project followed the five phases of action research: identification, investigation, program development, implementation, and evaluation. Heart Beads began as a small project which continues to grow in popularity and significance with children at a tertiary paediatric hospital in Sydney, Australia. The program is now being implemented nationwide with the vision that all Australian children hospitalised with cardiac conditions can benefit from Heart Beads.

The heart beads program.

From July 2008 through June 2009, 760 infants and children with cardiac conditions were admitted to a pediatric hospital in Australia with approximately 360 cardiac surgical procedures performed.This was the first experience in hospital for many of these children, with diagnoses signaling the beginning of a long and arduous journey. These children undergo multiple treatments and procedures,as well as multiple admissions for further surgeries. Procedures in any regard can cause stress and anxiety, especially in children who often have limited understanding and so little control over what happens to them (Lau, 2002).A heart center for children exists at the hospital with the aim of providing a consistent experience for children with cardiac conditions as they move through the different hospital environments, from preadmission clinic to operating theaters to the pediatric intensive care unit (PICU), and then on to the cardiac ward. The Heart Beads Program was developed within a context of person-centered care to enrich the experience of children with cardiac conditions by providing them with distinctive beads specific to each procedure, treatment, or event in recognition of their experiences and endurance (McCormack et al., 2008). This column focuses on the process of starting the program and on preliminary responses from staff, children, and families.