scholarly journals Challenges for Adolescents With Congenital Heart Defects/Chronic Rheumatic Heart Disease and What They Need: Perspectives From Patients, Parents and Health Care Providers at the Institut Jantung Negara (National Heart Institute), Malaysia

2021 ◽  
Vol 11 ◽  
Author(s):  
Sue Kiat Tye ◽  
Geetha Kandavello ◽  
Syarifah Azizah Wan Ahmadul Badwi ◽  
Hariyati Sharima Abdul Majid
Keyword(s):  
Health Care ◽  
Heart Disease ◽  
Health Care Providers ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Care Providers ◽  
Psychoeducational Program ◽  
Adolescent Transition ◽  
Rheumatic Heart

ObjectivesThis study aimed to describe the experiences and challenges faced by adolescents with moderate and severe congenital heart defects (CHD) or Chronic Rheumatic Heart Disease (CRHD) and to determine their needs in order to develop an Adolescent Transition Psychoeducational Program.MethodsThe study involved seven adolescents with moderate to severe CHD/CRHD, six parents, and four health care providers in Institute Jantung Negara (National Heart Institute). Participants were invited for a semi-structured interview. Qualitative data were analyzed through the Atlas.ti 7 program using triangulation methods.Results/conclusionsWe identified five themes concerning the experience and challenges of adolescents relating to: (1) emotional/psychological issues; (2) the progress of the illness; (3) relationship issues; (4) future preparation; and, (5) school and community. These themes were identified together with eleven subcategories. The staff expressed support for the development of the Adolescent Transition Psychoeducational Program and adolescents with CHD/CRHD and their parents were willing to participate in the program if their schedule allowed. Their suggestions to improve the program were classified into six categories, with two main themes, (1) the self-management of illness in life and the future; and, (2) social support. In conclusion, the findings from the situation analysis act as a basis for a conceptual framework that will contribute to the development of an Adolescent Transition Psychoeducational Program that aims to empower adolescents with CHD/CRHD, enabling them to manage challenges during the transition phase between childhood and adulthood.

scholarly journals Struggling and Overcoming Daily Life Barriers Among Children With Congenital Heart Disease and Their Parents in the West Bank, Palestine

2018 ◽  
Vol 24 (4) ◽  
pp. 585-611 ◽  
Author(s):  
Kawther Elissa ◽  
Carina Sparud-Lundin ◽  
Åsa B. Axelsson ◽  
Salam Khatib ◽  
Ewa-Lena Bratt
Keyword(s):  
Health Care ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Care Providers ◽  
Congenital Heart ◽  
Daily Life ◽  
West Bank ◽  
Well Being ◽  
Negative Consequences ◽  
Care Providers

Advances in early diagnosis, treatment, and postoperative care have resulted in increased survival rates among children with congenital heart disease (CHD). Research focus has shifted from survival to long-term follow-up, well-being, daily life experiences, and psychosocial consequences. This study explored the everyday experiences of children with CHD and of their parents living in the Palestinian West Bank. Interviews with nine children aged 8 to 18 years with CHD and nine parents were analyzed using content analysis. The overall theme that emerged was facing and managing challenges, consisting of four themes: sociocultural burden and finding comfort, physical and external limitations, self-perception and concerns about not standing out, and limitations in access to health care due to the political situation. To provide optimum care for children with CHD and their parents, health care providers and policy makers must understand the negative consequences associated with sociocultural conditions and beliefs about chronic illness.

scholarly journals Factors Related to Congenital Heart Disease in Offspring from Women with Rheumatic Heart Disease: Case reports from Moi Teaching and Referral Hospital, Eldoret, Kenya

2019 ◽  
Vol 2 (3) ◽  
pp. 87-92
Author(s):  
Philippe PA ◽  
Orang’o EO ◽  
Barasa FA
Keyword(s):  
Heart Disease ◽  
Rheumatic Heart Disease ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Defects ◽  
Case Reports ◽  
Rare Event ◽  
High Morbidity ◽  
Disease Case ◽  
Rheumatic Heart

Maternal exposure to environmental factors has been reported to be associated with birth defects. Congenital heart defects are the most common and are associated with high morbidity and mortality in offspring. However, the relation of maternal rheumatic heart disease to congenital heart defects in the offspring is a rare event not yet reported. The authors report 2 cases of infants with congenital heart defects born from mothers with rheumatic heart disease. This study highlights factors related to congenital heart defects in both newborns.

Barriers and facilitators to discussing parent mental health within child health care: Perspectives of parents raising a child with congenital heart disease

2021 ◽  
pp. 136749352110580
Author(s):  
Melanie K Franklin ◽  
Allison Karpyn ◽  
Jennifer Christofferson ◽  
Linda G McWhorter ◽  
Abigail C Demianczyk ◽  
...  
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Care Providers ◽  
Congenital Heart ◽  
Barriers And Facilitators ◽  
Child Health Care ◽  
Care Providers ◽  
Parent Mental Health

This study aimed to identify barriers and facilitators to discussing parent mental health within child health care for parents of children with congenital heart disease (CHD). Seventy-nine parents of young children with CHD who received care across 40 hospitals in the United States responded to questions about barriers and facilitators to discussing their mental health with their child’s health care providers. Responses were analyzed using qualitative research methods. Parents described multiple barriers: (1) belief that parent mental health support was outside the care team’s scope of practice, (2) perceived expectation to “stay strong,” (3) fear of negative judgment or repercussion, (4) individual preferences for communication/support, (5) desire to maintain care resources on their child, (6) perceived need to compartmentalize emotions, and (7) negative reactions to past emotional disclosure. Parents also described several facilitators: (1) confidence in the care team’s ability to provide support, (2) intentional efforts by the care team to provide support, (3) naturally extroverted tendencies, and (4) developing personal connections with health care providers. It is important that health care providers normalize the impact of child illness on the family and create an environment in which parents feel comfortable discussing mental health challenges.

scholarly journals Personalized Genetic Diagnosis of Congenital Heart Defects in Newborns

2021 ◽  
Vol 11 (6) ◽  
pp. 562
Author(s):  
Olga María Diz ◽  
Rocio Toro ◽  
Sergi Cesar ◽  
Olga Gomez ◽  
Georgia Sarquella-Brugada ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart Defects ◽  
Congenital Malformations ◽  
Congenital Heart ◽  
Heart Diseases ◽  
Heart Defects ◽  
Genetic Diagnosis ◽  
Single Nucleotide Variants ◽  
Personalized Approach

Congenital heart disease is a group of pathologies characterized by structural malformations of the heart or great vessels. These alterations occur during the embryonic period and are the most frequently observed severe congenital malformations, the main cause of neonatal mortality due to malformation, and the second most frequent congenital malformations overall after malformations of the central nervous system. The severity of different types of congenital heart disease varies depending on the combination of associated anatomical defects. The causes of these malformations are usually considered multifactorial, but genetic variants play a key role. Currently, use of high-throughput genetic technologies allows identification of pathogenic aneuploidies, deletions/duplications of large segments, as well as rare single nucleotide variants. The high incidence of congenital heart disease as well as the associated complications makes it necessary to establish a diagnosis as early as possible to adopt the most appropriate measures in a personalized approach. In this review, we provide an exhaustive update of the genetic bases of the most frequent congenital heart diseases as well as other syndromes associated with congenital heart defects, and how genetic data can be translated to clinical practice in a personalized approach.

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