here - Little Hearts Matter

Zipper ZoneBelow Jon gives an update on the youth research that has beenundertaken over the last two years.Written byJon BrunskillYouth Development Officer20We know that the physical, psychological and emotionaldevelopment that an adolescent goes through duringteenage years can create huge challenges. Add into thisturmoil a complex heart condition and the anxiety andconfusion is only compounded. Little Hearts Matter hasworked closely with families affected by single ventricleheart defects (SVHDs) for over twenty years, but to datethere is very little primary data that has been collected fromthe young people in which they are able to voice the physicaland psychological effects of these non-correctable heartconditions.Anecdotal evidence from parents and teenagers wouldsuggest that there is a clear link between living with a SVHDand struggling with challenges above and beyond those ofa normal adolescent. Often the support needed to ensurethat these young people can reach their full potential isinconsistent or simply not existent. The aim of the ‘How IFeel’ Study was to provide quantified data supported byqualitative experience that would support the need forchange within medical care, education services, careersupport and social services. We also hoped to identifychallenges that may be incidental or occasional.Over the last two years the LHM Research Team -consisting of Suzie Hutchinson, two parent trustees, twoclinical psychologists, a youth worker and myself - haveworked to create an accessible questionnaire targetingissues which have been identified as obstacles to youngpeople developing towards an independent life. Thequestionnaire was broken down into the following sections:• Hospital and Medication• Family and Friends• School• Feelings and…stuff• Big Kids (for young people in Year 9 or over)• Diet and Food• Sports and Activities31 young people, aged between 10 and 18, took part inthis questionnaire. Young people treated at Southampton,Birmingham, GOSH (London), Evelina (London), Alder Hey(Liverpool), Glenfield (Leicester) and Freeman (Newcastle)were represented.The participantshad a range ofSVHDs, includingHypoplastic LeftHeart Syndrome, Pulmonary Atresia, Tricuspid Atresia andUniventricular Heart. Analysis of their response is currentlyunderway, however initial results would suggest that thedata supports anecdotal evidence.For example, of the 31 participants, 26 attended amainstream school, and of these 26 only 10 receivedlearning support.• 26/31 attend mainstream state schools• 16 receive no support• 10 receive supportThis data will be supported by qualitative data collectedthrough telephone interviews with young people with aSVHD. The aim is to illustrate the figures with powerfulexplanations from the young people directly affected bythese conditions.All young people aged 10 – 18 will be offered theopportunity to take part in this interview, and we hope toreceive your support in our endeavour to produce a rigorousaccount of how it actually feels to live with a heart conditionas an adolescent. The outcomes of this project will be moreaccurately targeted service provision from Little HeartsMatter, as well as an invaluable tool for the entire spectrumof care givers to these young people.