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Nephrotic Syndrome. £45. Obtainable from Audiovisual and Educational Services, University of Nottingham, Kidney Unit, Nottingham City Hospital, Hucknall Road, Nottingham NG5 1PB.
Our son was diagnosed as having nephrotic syndrome five years ago. Luckily for him, and for us as parents, he is clinically managed at a small general hospital by a generalist paediatrician, which has meant that information is readily accessible and our questions are answered directly. This was particularly helpful in the early days of the syndrome because, with correct parental and clinical management life is virtually normal for both patient and family—even though our son suffers frequent relapses. Larger inner city hospitals may find this sort of management very difficult, if not impossible, to deliver for a variety of very good reasons.
This video is obviously targeted at the parents of newly diagnosed children and could be a vital tool in families’ understanding and acceptance of the illness. It runs for about 12 minutes but during this short time it takes all the initial information given by a doctor and breaks it down. Simple language and diagrams are used to underline, clarify and reassure, and we experience it all by watching real children receiving treatment and being supported by their families. This leads into a more in-depth account of some of the detail of the management of this condition—steroid treatment and the possible side effects, relapses, keeping a diary, carrying out home urine tests, and includes the type of ongoing support that is received and readily available.
Possible complications are dealt with in just the right amount of detail so that families know what to expect but are not alarmed.
It would however be unjust to consider this video as useful only in briefing newly diagnosed families as its relevance is far broader. Indeed, since this syndrome is more prevalent in Asian children, I can only hope and suggest that copies are made in the appropriate languages. With some Asian parents, particularly mothers, having a poor command of English and often relying heavily on their secondary schoolchildren to act as interpreters, any device which can inform and clarify must be welcomed by clinicians, patients, and families. Equally valid would be its use in the education and understanding of the disease for some of its sufferers. Simon, our 10 year old son, who has the syndrome, found the video answered some of his questions, was enjoyable to watch, and gave him a better understanding of his illness and treatment.
At £45 per copy the video will not be bought by many individual families. However, hospitals, libraries, and general practitioner surgeries should find it a very useful reference resource (for lending?).
I have referred in this review to the video’s suitability for ‘newly diagnosed families’. The diagnosis of a child as having a rare and potentially dangerous condition can feel to families like the end of a normal life. The gently and accessibly factual content in this video amply addresses the danger and will enable families to carry on their lives normally and safely.