What Does it Mean to Live with a Congenital Heart Disease? A Qualitative Study on the Lived Experiences of Adult Patients

Claessens, Patricia; Moons, Philip; Casterlé, Bernadette Dierckx de; Cannaerts, Nancy; Budts, Werner; Gewillig, Marc

doi:10.1016/j.ejcnurse.2004.12.003

Cited by 116 publications

(103 citation statements)

References 33 publications

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“…Moreover, individuals with CHD experience frequent fatigue, leading to increased difficulty in paying attention during class as the day progresses [1,17]. Having a poorer school performance can be a barrier to successful employment, and many employers may be reluctant to hire a worker who may have physical limitations [3][4][5].…”

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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“…It is not uncommon for adults with CHD to report difficulties with social interactions, conflicting social expectations, and "feeling different" from their peers. 429,430 Recalled parental overprotection has been associated with heart-focused anxiety in adulthood. 431 Furthermore, loneliness and social anxiety have been linked to low mood and generalized anxiety among adults with CHD.…”

Section: Psychosocial Prevalencementioning

confidence: 99%

Diagnosis and Management of Noncardiac Complications in Adults With Congenital Heart Disease: A Scientific Statement From the American Heart Association

Lui¹,

Saïdi²,

Bhatt³

et al. 2017

Circulation

180

136

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ABSTRACT:Life expectancy and quality of life for those born with congenital heart disease (CHD) have greatly improved over the past 3 decades. While representing a great advance for these patients, who have been able to move from childhood to successful adult lives in increasing numbers, this development has resulted in an epidemiological shift and a generation of patients who are at risk of developing chronic multisystem disease in adulthood. Noncardiac complications significantly contribute to the morbidity and mortality of adults with CHD. Reduced survival has been documented in patients with CHD with renal dysfunction, restrictive lung disease, anemia, and cirrhosis. Furthermore, as this population ages, atherosclerotic cardiovascular disease and its risk factors are becoming increasingly prevalent. Disorders of psychosocial and cognitive development are key factors affecting the quality of life of these individuals. It is incumbent on physicians who care for patients with CHD to be mindful of the effects that disease of organs other than the heart may have on the well-being of adults with CHD. Further research is needed to understand how these noncardiac complications may affect the long-term outcome in these patients and what modifiable factors can be targeted for preventive intervention.

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“…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. 62 McDonagh 64 highlighted the importance of "negotiating" parental involvement throughout the transition process.…”

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

392

280

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What Does it Mean to Live with a Congenital Heart Disease? A Qualitative Study on the Lived Experiences of Adult Patients

Abstract: This study shows that normalisation is the most important process when dealing with patients suffering from a congenital heart disease.

Cited by 116 publications

References 33 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

Diagnosis and Management of Noncardiac Complications in Adults With Congenital Heart Disease: A Scientific Statement From the American Heart Association

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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