Being diagnosed with and living with a congenital cardiac condition can be exhausting and emotionally draining for the children, young people and adults that we care for, as well as their families. These families also have to deal with being given a wealth of information at all points in their care. In the current age, more and more patients turn to the internet for information, and a large number of these websites carry false or anecdotal evidence, so it is important that we as nurses are able to point these families towards genuine websites to obtain information. The websites listed below also function as support groups and facilitate communication between families who are living with the same condition.
Little Hearts Matter– Little Hearts Matter are a national charity supporting families affected by the diagnosis of a single ventricle heart condition such as Hypoplastic Left Heart Syndrome. They offer a 7 day a week telephone support line, which out-of-hours is manned by parent volunteers who can share their own experiences. They facilitate a family linking service and hold open days so people can support each other and share ideas. They also have a large directory of publications and information booklets that cater to varying degrees of understanding.
The Children’s Heart Federation (CHF) is a national charity championing children with heart conditions, wherever they live in the UK and whatever their condition. CHF provides a wide range of information sheets covering most heart conditions in children and on subjects related to their care. The popular Molly’s Dollies and books for children, provided by CHF, help children understand their heart condition and how it affects them. CHF also hosts the private forum Pulse parents and holds regular online events for parents and carers with a guest speaker answering their questions.
Arrythmia Alliance– Arrythmia Alliance is a coalition of charities, patient groups, patients, carers, medical groups and allied professionals. Although these groups remain independent, they work together under the name of Arrythmia Alliance to improve awareness, diagnosis and treatment of cardiac arrythmias. They provide links to local support groups across the country, have various campaign events not just in the UK but the USA aswell, and have a large amount of resources for patients and clinicians.