A life less ordinary: growing up and coping with congenital heart disease

McMurray, Robert G.; Kendall, Lynne; Parsons, Jonathan; Quirk, J. A.; Veldtman, Gruschen; Lewin, Robert; Sloper, Patricia

doi:10.1054/chec.2001.0112

Cited by 67 publications

(66 citation statements)

References 10 publications

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“…Individuals with CHD are more likely to be excluded from activities that require social interaction, such as sports, work or other activities, when others are overprotective. This can lead to feelings of helplessness in patients that are related to observable physical symptoms [5,6,14]. This may explain why individuals with fewer physical limitations perceive their QOL as better than those whose physical activities are more restricted.…”

Section: Discussionmentioning

confidence: 99%

Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

et al. 2011

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This study aimed to assess the quality of life (QOL) experienced by adolescents and young adults with congenital heart disease (CHD) and to determine which factors negatively affect adjustment and which factors increase resilience. The participants in the study were 74 patients with CHD (41 males and 33 females) ranging in age from 12 to 26 years (mean age, 18.76 ± 3.86 years). Demographic information and a complete clinical history were obtained. The participants were interviewed regarding topics such as social support, family educational style, selfimage, and physical limitations. They responded to questions in a standardized psychiatric interview (SADS-L) and completed a self-report questionnaire (WHOQOL-BREF) for assessment of QOL. Compared with the Portuguese population as a whole, the study patients had better QOL, especially with regard to the environmental dimension (t = 3.754; P = 0.000) and social relationships (t = 2.333; P = 0.022). Patients who had undergone surgery experienced poorer QOL in the physical dimension (t = -1.989; P = 0.050), in social relationships (t = -2.012; P = 0.048) and overall (Mann-Whitney U = 563.000; P = 0.037). Social support played a positive role in the QOL of the patients, both in the physical dimension (t = 3.287; P = 0.002) and in social relationships (t = 3.669; P = 0.000). A higher school achievement also was associated with higher levels of QOL overall (Mann-Whitney U = 457.000; P = 0.046) as well as in the physical (t = 2.045; P = 0.045) and environmental (t = 2.413; P = 0.018) dimensions. Physical limitations had a detrimental impact on general QOL (Mann-Whitney U = 947.500; P = 0.001) and on the physical (t = -2.910; p = 0.005) and psychological (t = -2,046; P = 0.044) dimensions. Patients with CHD tended to perceive QOL as better when their social networks were supportive.

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Section: Discussionmentioning

confidence: 99%

Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

et al. 2011

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“…Furthermore, there had not been any references to the future or their expectations from life. In accordance with McMurray et al the unknown and the uncertainty of their illness might have prevented the process of taking initiatives and making decisions [21]. The use of the repression mechanism by children and adolescents with health problems has only recently begun to be discussed in the literature [22].…”

Section: Discussionmentioning

confidence: 99%

Coming from behind to win - A Qualitative research about psychological conditions of adolescents who have undergone open-heart surgery for single ventricle between the ages 0-5

Zahmacioglu

Yıldız

Koca

et al. 2011

J Cardiothorac Surg

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Early recognition of congenital cardiac pathologies and their treatment by means of palliative or corrective surgery at birth or infancy has vital importance. Successful repair of congenital cardiac defects by surgical methods has gained importance especially during the last twenty years. As the scope of the surveillance increased so did the interest in the outcomes of these treatments when the patients had reached puberty and adulthood. The purpose of our research was to study the psychological framework of the adolescents who had experienced these surgeries by listening both the children and the parents talk about their feelings and experiences. Our data was accumulated through interviews with 17 adolescents and their families, using qualitative methods. The main theme at the end of the analysis was "to be strong and resistive". We reached the conclusion that this condition was not a pathological build up but an attitude of coping, as it did not cause loss of functionality. The defensive psychological mechanisms used by these adolescents consisted of repression, compensation and reaction formation. We believe that this information is important to understand the real meaning of the manners displayed when these adolescents and their families pursue their daily lives, communicate and make relationships with their environment and especially professionals in the health services.

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“…Adolescents in another qualitative study developed strategies to deal with the physical limitations and decreased stamina imposed by the disease, but the discrimination and bullying they experienced from peers left them feeling particularly angry and excluded. 51 Evaluation of QOL in adolescents with CHD by use of the Pediatric Quality of Life Inventory revealed significantly lower overall perceived QOL, including physical, psychosocial, and school functioning, with the greatest difference in the domain of school functioning. Specific psychosocial issues included feeling angry and being worried about the future, and these were unrelated to the severity of the cardiac defect.…”

Section: Ssi Indicates Supplemental Security Incomementioning

confidence: 93%

“…27,60 Many adults with CHD recall parental overprotection during their teenage years. 32,51,61,62 Parenting styles can either hinder or support the appropriate integration of illness into lifestyle. 63 Furthermore, even after parents have relinquished control over their adult child's healthcare management, control might shift back to the parents in situations when there is dissatisfaction with medical communication or competency of care.…”

Section: Parent/familymentioning

confidence: 99%

Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues

Sable¹,

Foster²,

Uzark³

et al. 2011

Circulation

387

280

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A life less ordinary: growing up and coping with congenital heart disease

Cited by 67 publications

References 10 publications

Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

Quality of Life Experienced by Adolescents and Young Adults With Congenital Heart Disease

Coming from behind to win - A Qualitative research about psychological conditions of adolescents who have undergone open-heart surgery for single ventricle between the ages 0-5

Best Practices in Managing Transition to Adulthood for Adolescents With Congenital Heart Disease: The Transition Process and Medical and Psychosocial Issues

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