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Specialist cardiac services: what do young people want?

Published online by Cambridge University Press:  01 December 2008

Jo Wray  and
Linda Maynard
Jo Wray*
Affiliation:
Royal Brompton & Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, United Kingdom
Linda Maynard
Affiliation:
Royal Brompton & Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, United Kingdom
*
Correspondence to: Dr Jo Wray, Children’s Clinic, Royal Brompton & Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, UB9 6JH. Tel: 01895 828761; Fax: 01895 828554; E-mail: jo.wray@btopenworld.com
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Abstract

Purpose

With improvements in the surgical and medical management of children with congenital heart disease, the majority are now expected to transition into adult services. Whilst the importance of successful transition is increasingly acknowledged, previous research has identified a number of areas of concern. We therefore wished to elicit the views of young people themselves concerning their requirements from a specialist cardiac service.

Methods

Using an exploratory approach our aims were to increase awareness of the service needs and expectations of young people, identify good practice and areas where communication processes and facilities could be improved, and enhance understanding of transition between paediatric and adult services. Postal questionnaires were sent to 63 young people with congenital cardiac disease aged 17 to 20 years. Open ended questions asked for views and experiences about facilities in the paediatric and adult areas, perceptions of transition between services and suggestions for improvements. Qualitative data were transferred verbatim into electronic format to facilitate coding and theming.

Results

Thirty-eight (60.3 percent) completed questionnaires were received. A number of themes, including communication, care processes/caring interactions and environment, emerged regarding areas of satisfaction and dissatisfaction within the paediatric and adult services, together with areas for improvement and important aspects of transition.

Conclusions

Young people’s views need to be taken into account at all stages of the patient journey. They want an individualised approach to their care which recognises that they have specific emotional and practical needs. Such findings need to be incorporated into an ongoing model of care.

Keywords

Congenital heart diseaseadolescentstransition
Type
Original Article
Information
Cardiology in the Young , Volume 18 , Issue 6 , December 2008 , pp. 569 - 574
Copyright
Copyright © Cambridge University Press 2008

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