Growing up with congenital heart disease: the dilemmas of adolescents and young adults

Tong, Elizabeth; Sparacino, Patricia S.A.; Messias, DeAnne K. Hilfinger; Foote, Dru; Chesla, Catherine A.; Gilliss, C

doi:10.1017/s1047951100006806

Cited by 98 publications

(85 citation statements)

References 15 publications

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“…Most studies of this type survey parents, and few investigators have relied on direct responses from children with congenital heart defects. 14 Guyatt et al 15 noted that parents of children aged 11 years or older provided little information regarding their child's quality of life beyond that obtained directly from the child.…”

Section: Discussionmentioning

confidence: 99%

Quality of Life of Children After Repair of Transposition of the Great Arteries

Culbert

Ashburn²,

Cullen-Dean³

et al. 2003

Circulation

109

104

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Background— We sought to assess quality of life of children with transposition of the great arteries (TGA) enrolled during transition in management strategy from atrial to arterial switch operation. Methods and Results— Neonates enrolled by the Congenital Heart Surgeons Society in a prospective study of TGA between 1985 and 1989 were eligible. A Child Health Questionnaire was sent for completion by the child between February and June 2000. Data were compared with published normative values. Child Health Questionnaires were completed by 306 of 708 survivors at a mean age of 13±1 years. Diagnosis included TGA (n=202, 66%), TGA/ventricular septal defect (VSD) (n=84, 27%), and TGA/VSD/pulmonary stenosis (n=20, 7%). Repair type was arterial switch (n=189, 62%), atrial switch (n=105, 34%; Senning=58, Mustard=47), or Rastelli (n=12, 4%). Children with TGA scored significantly higher than published norms in all categories except self-esteem. TGA/VSD/pulmonary stenosis was associated with lower scores than TGA and TGA/VSD in physical functioning ( P =0.002), general health perceptions ( P =0.012), and mental health ( P =0.048). Arterial repair was associated with higher scores than atrial or Rastelli repair in physical functioning ( P <0.001), pain ( P =0.004), mental health ( P =0.019), self-esteem ( P =0.004), and general health perceptions ( P <0.001). By multivariable analyses, the most common independent factors impacting scores were repair type, perfusion parameters, and gender. Conclusions— Quality of life and health status as perceived by children 11 to 15 years after TGA repair is excellent when compared with published normative data and is better after arterial switch operation than after atrial repair.

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Section: Discussionmentioning

confidence: 99%

Quality of Life of Children After Repair of Transposition of the Great Arteries

Culbert

Ashburn²,

Cullen-Dean³

et al. 2003

Circulation

109

104

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“…Similar findings were noted in the recent Kennedy report. 10a Studies which have consulted young people directly [11][12][13] have also suggested that they had needs for rehabilitation that were not met. A recent survey of all centres for paediatric cardiology in the United Kingdom indicated that, whilst the health professionals agreed that rehabilitation was required, only one centre reported having a formal programme serving this purpose.…”

Section: O Ver the Last Decade There Has Been Anmentioning

confidence: 99%

The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease

et al. 2003

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Article:Kendall, L, Sloper, P, Lewin, R. J. P et al.(1 more author) (2003) The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease. Cardiology in the Young. pp. 20-27. ISSN 1047-9511 https://doi.org/10.1017/S1047951103000052 eprints@whiterose.ac.uk https://eprints.whiterose.ac.uk/ Reuse Items deposited in White Rose Research Online are protected by copyright, with all rights reserved unless indicated otherwise. They may be downloaded and/or printed for private study, or other acts as permitted by national copyright laws. The publisher or other rights holders may allow further reproduction and re-use of the full text version. This is indicated by the licence information on the White Rose Research Online record for the item. TakedownIf you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request.O VER THE LAST DECADE, THERE HAS BEEN AN increasing interest in the psychosocial issues affecting children with congenital cardiac disease. Studies have been conducted of the emotional and intellectual functioning of patients 1-5 and physical aspects of the children's quality of life. These findings have led to calls for the provision of exercise-based programmes of rehabilitation. 6,7 Few studies have directly sought the views of young people with congenital cardiac disease or their parents. Studies with parents 8,9 show that they experience raised levels of psychological distress, and less adequate strategies for coping, in comparison to normative reference groups. Similar findings were noted in the recent Kennedy report. 10a Studies which have consulted young people directly 11-13 have also suggested that they had needs for rehabilitation that were not met. A recent survey of all centres for paediatric cardiology in the United Kingdom indicated that, whilst the health professionals agreed that rehabilitation was required, only one centre reported having a formal programme serving this purpose. 14 Two of the most commonly reported barriers to providing a service were scarce resources, and the distance that patients would have to travel for a hospital-based service. There has been no research on the form of rehabilitation service that patients and parents would find most useful. Our preliminary work 14 suggests that a traditional hospital-based service may not be the most suitable means of delivering the help required. In adults with ischaemic heart disease following myocardial infarction, a solution to such problems has been developed in the form of home-based, self help, programmes facilitated by telephone from the hospital, Abstract Background and purpose: Although much previous research has focused on the medical aspects of congenital cardiac disease, there is a growing body of research which suggests that families may need help and support with the wider issues associated with the medical conditio...

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“…One recommendation was that "all health professionals need to take a holistic approach to caring for children, including consulting them about their own needs, since their views are not necessarily the same as adult proxies". 16 Few studies, with some exceptions, 17,18 have directly sought the views of young people with congenital cardiac disease. The findings of studies that have consulted young people suggest that they had needs for rehabilitation that were not met.…”

mentioning

confidence: 99%

The views of young people with congenital cardiac disease on designing the services for their treatment

et al. 2003

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Background and purpose:There is little documented evidence of young people with congenital cardiac disease being consulted as to what help, if any, they really need in relation to their condition. Most research concentrates on the medical aspects of the condition. There are studies of psychological and social functioning, but few have directly sought the opinions of the young people. More recent research has indicated a need for health professionals to develop services to meet both psychosocial and physical needs of young people with congenital cardiac disease. The findings of the recent Kennedy Report support this need. The purpose of this study was to explore the views of young people with a range of congenital cardiac conditions, on what would help them better deal with their condition, and when and how help might be provided.Methods:This was a qualitative study using semi-structured interviews. We interviewed 16 young people in their own home. Interviews were tape-recorded and transcribed. Analysis was conducted using the “Framework” method.Results:Whilst most of the young people interviewed actively manage their condition, they think more support from others would be beneficial. Issues of activity and communication were cited most often as areas requiring more understanding from people they interact with, for example teachers and peers. The discussion focuses on how health professionals might change or develop their practice to help young people better cope with their condition.Conclusions:Most of the young people interviewed in this study had developed their own strategies for coping with their condition. Although this is a small study, the young people provided important suggestions as to how health professionals could better develop current services.

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Growing up with congenital heart disease: the dilemmas of adolescents and young adults

Cited by 98 publications

References 15 publications

Quality of Life of Children After Repair of Transposition of the Great Arteries

Quality of Life of Children After Repair of Transposition of the Great Arteries

The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease

The views of young people with congenital cardiac disease on designing the services for their treatment

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