But how to explain these findings? It is designed for cross-cultural subjective assessment and it can be used in any country where people can read and understand English. In congenital heart disease, specific HRQoL measures have begun to emerge recently and are still in the process of being tested and validated in different cultural contexts.
The instrument used to assess parental QOL was distributed by the authors to the families of the study group during inpatient or outpatient visits, during home visit or by mail and email and were returned to the authors via a parental visit to the clinic, a second home visit or by mail and email.
In general, the QoL assessment tools in childhood have little congruence in relation to the content covered, with different conceptions about normal childhood development in different age groups and the importance of family function and social context as factors necessary for their well being.
These findings show that the association between severity of diagnosis and QoL has not yet been elucidated among children and adolescents with CHD, possibly due to the methodological differences mentioned above.
Congenital heart disease in teenagers. J Pediatr Rio J ;84 1: Other studies found a small difference between the QL of congenital heart disease patients, when compared to population standards 48 - It measures 26 items and it is possible to derive four domain area scores.
Where an item was missing, the mean of other items in the domain was substituted [ 3 ]. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease.
These results confirm the importance of considering the biopsychosocial functioning of the adolescent with heart disease in the evaluation of their QoL, and the Sense of Coherence emerges as a valuable resource to be developed.
Aims of the present study were: Quality of life in families of children with congenital heart disease.
In a longitudinal study performed by Apers et al. Neurodevelopmental Outcomes in children with congenital heart disease: This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
The second transformation method converts domain scores to a scale Popular Essays. The concept of Quality of Life has been developed over many decades and applied to a wide range of target groups and whole populations. Quality of life in children with congenital heart defects.
Objective of the study: Some studies highlight the importance of a transition program in assisting health 2226 - 28with the objective to educate adolescents with CHD on their medical condition and guide them with regard to physical exercises 2930sexuality 31 and entrance into the labor market.
According the findings of a systematic review conducted by Dahan-Oliel, Majnemer and Mazer 38such results are related in part to the physical limitations - actual or perceived - in subjects with CHD, which can lead to unnecessary restrictions and overprotective behavior that possibly interfere in their perception over QoL.
Goldbeck L, Melches J. The broad spectrum of contents and the variety of scales and items envisaged in the QoL instruments in childhood reflect the differences in their process of preparation, in the theoretical line used, in the target population and in the objectives of application of the instrument 45.
Int J Nurs Stud. The incidence of congenital heart disease. Additionally, references were sought in books authored by specialists in the field of literature review articles with adequate theoretical quality for the discussion of the topic, in order to complement and deepen the analysis of the current literature.
The presence of cyanosis was not associated with worsening of QoL; however, the number of surgical procedures and moderate to severe residual lesions had a significant impact on it.
The maintenance of health in children with CHD still requires care from parents and medical staff with nutrition, immunization, winter disease prevention and prophylaxis of bacterial endocarditis, all these aspects vital to their long-term survival Quality of life experienced by adolescents and young adults with congenital heart disease.
Expert Rev Pharmacoecon Outcomes Res. Congenital Heart Surgeons Society Quality of life of children after repair of transposition of the great arteries. All of these variables that interact in the perception of quality of life are difficult to grasp by a single measuring instrument.
There are also two items that are examined separately: For each subject 2 questionnaires were provided to parents independently of the family status, for a total number of questionnaires questionnaires for the PDDs group, questionnaires for the MR group, 80 questionnaires for the CP group.
The purpose of this study is to review the literature on the assessment of health related quality of life in children and adolescents with congenital heart disease, in order to systematize the existing knowledge on this topic today. It consists of three components: Mean scores are then multiplied by 4 in order to make domain scores comparable with the scores used in the WHOQOLWHO Quality of life- BREF: For assessing quality of life of parents having children with intellectual disabilities.
The WHOQOL-BREF is a generic multidimensional QOL instrument which has been developed simultaneously across 15 international field centers, including two centers in New Delhi and Chennai (formerly, Madras) in India.
This article draws on a recent study that investigated the quality of life of parents of children/adults who have an intellectual disability and who are availing of respite care. The findings suggest that parents are experiencing ‘good’ to ‘excellent’ quality of life and that demand exceeds supply.
Background. Previous research has raised concerns about the quality of life (QoL) of parents of children with autism spectrum disorder (ASD). A better understanding of parental QoL can inform clinicians and policymakers and lead to improved outcomes for both parents and children.
Quantitative and qualitative evidence indicates that parental quality of life is influenced by having a child with ASD. • Measurement of parental quality of life is important for helping parents improve their well-being and thus be better equip to help their children.
Quality of life can be impaired in children, adolescents and adults with ADHD Registration gives the benefit of site update e-mails and additional information from Shire on. Health related quality of life in children and adolescents.
While the quality of life (QoL) in adults has been investigated in the past decade, this study among children and adolescents is a recent area.Download