Purpose When you have a single ventricle heart you have less energy than your peers. Learning to live within the physical and mental restrictions created is a challenge for young people. Finding ways to gain a greater understanding of what those limitations mean for your everyday life is essential if each young person is going to maximise the potential of their heart function and live as full a life as their condition will allow.
Methods Using communication tools created in partnership with SVHD teenagers, a short film, a spoon kit and a dedicated youth web page, the Little Hearts Matter team have been testing the Half the Energy project. The Energy Tool Box and education sessions have been presented at Little Hearts Matter events over six months. Face to Face feedback, Survey Monkey questionnaires and star chart tools have been used to assess the effectiveness of the information given.
Results Over 250 children, young adults and adults affected by SVHD and parents have trialled the tools. The feedback has been overwhelmingly positive with all users reporting an improved understanding of their energy levels and how they can use their energy more productively. A number of UK CHD units are now introducing the spoon theory when explaining reduced energy levels and how to balance them each day.
Conclusion It is clear that visual tools that explain energy restrictions can help young people to understand that they need to balance their daily physical needs within their individual energy tolerance.
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