Psychosocial risk in families of infants undergoing surgery for a serious congenital heart disease

2013 ◽  
Vol 24 (4) ◽  
pp. 632-639 ◽  
Author(s):  
Simone J. Hearps ◽  
Maria C. McCarthy ◽  
Frank Muscara ◽  
Stephen J. C. Hearps ◽  
Kylie Burke ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Parent Education ◽  
Congenital Heart ◽  
Assessment Tool ◽  
Acute Stress ◽  
Total Sample ◽  
Psychosocial Risk ◽  
Psychosocial Assessment ◽  
Optimal Parenting

AbstractObjective:The aim of this study was to explore the acute psychosocial risk in families with infants undergoing surgery for a congenital heart disease and, secondarily, to explore the psychosocial impact of antenatal versus post-natal diagnoses.Method:The study sample comprised 39 caregivers (28 mothers) of 29 children diagnosed with a congenital heart disease and requiring surgery within the first 4 weeks of life. Psychosocial risk was measured using the Psychosocial Assessment Tool, which was adapted to include four novel items examining infant risk factors, namely, sleeping, feeding, crying, and bonding difficulties. Parents’ psychosocial risk was measured within 4 weeks after their child's surgery and stratified into a three-tiered framework: Universal, Targeted, and Clinical risk.Results:Of the total sample, 61.5% of parents were classified as Universal, that is, at lowest risk; 35.9% as Targeted, and 2.6% as Clinical. The within-family parent total Psychosocial Assessment Tool score correlations were non-significant, and there were no differences between families of infants who received post-natal versus antenatal diagnosis or single ventricle versus biventricular repair. Linear regression found that a higher parent education significantly predicted a lower total Psychosocial Assessment Tool score.Conclusions:Findings indicate that, although the majority of parents adapt to the acute stress of surgery for a serious cardiac illness in their infant, the remaining 38.5% report an increased psychosocial risk associated with higher rates of emotional distress, which may impact on the parental quality of life and capacity for optimal parenting. The distribution of psychosocial risk in parents of children undergoing surgery for a congenital heart disease is consistent with that described for parents of children with other serious paediatric diagnoses.

scholarly journals Objective Physical Activity Assessment in Clinical Congenital Heart Disease Research: A Systematic Review on Study Quality, Methodology, and Outcomes

Cardiology ◽  
2021 ◽  
pp. 1-13
Author(s):  
Leon Brudy ◽  
Michael Meyer ◽  
Luisa Garcia-Cuenllas ◽  
Renate Oberhoffer ◽  
Alfred Hager ◽  
...  
Keyword(s):  
Physical Activity ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Pediatric Patients ◽  
Assessment Tool ◽  
Scientific Work ◽  
Study Quality ◽  
Cross Sectional ◽  
Blood Institute

<b><i>Background:</i></b> The shift toward a preventative approach in medical aftercare of congenital heart disease (CHD) patients has led to encouragement of regular physical activity (PA) in this patient population. Objective measures are crucial in accurately displaying PA levels and have increasingly found their way into clinical research. This review aims to give an overview about quality, methodology, and outcomes of current scientific work on accelerometers objectively assessing PA in patients with CHD. <b><i>Methods:</i></b> Systematically researched literature in all relevant databases (PubMed, Cochrane, and Scopus) over the past decade (2009–2019) with history of CHD and accelerometer-based PA assessment was evaluated by 2 independent reviewers according to the Study Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies of the National Heart, Lung, and Blood Institute. <b><i>Results:</i></b> Eight articles with 664 pediatric patients with CHD aged 3–18 years (range 10–162 patients), 5 studies with 574 adults with CHD aged 18–63 years (range 28–330 patients), and 3 studies with 177 pediatric patients and adults with CHD aged 8–52 years were included. Two studies were rated “good”; 9, “fair”; and 5, “poor.” Methodologies and devices differed substantially across all studies. <b><i>Conclusions:</i></b> Overall study quality was fair at best, and due to difficult methodological comparability of the studies, no clear answer on how active patients with CHD really are can currently be given. Larger studies carefully considering collection and processing criteria, and correct reporting standards exploring PA in patients with CHD from different angles are needed.

scholarly journals Acceptability of a parental early warning tool for parents of infants with complex congenital heart disease: a qualitative feasibility study

2018 ◽  
Vol 103 (9) ◽  
pp. 880-886 ◽  
Author(s):  
Kerry Louise Gaskin ◽  
Jo Wray ◽  
David J Barron
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Feasibility Study ◽  
Early Warning ◽  
Congenital Heart ◽  
Assessment Tool ◽  
Early Recognition ◽  
Home Monitoring ◽  
Complex Congenital Heart Disease ◽  
Normal Infant

AimTo explore the acceptability and feasibility of a parental early warning tool, called the Congenital Heart Assessment Tool (CHAT), for parents going home with their infant between first and second stage of surgery for complex congenital heart disease.BackgroundHome monitoring programmes were developed to aid early recognition of deterioration in fragile infants between first and second surgical stage. However, this necessitates good discharge preparation to enable parents to develop appropriate knowledge and understanding of signs of deterioration to look for and who to contact.DesignThis was a longitudinal qualitative feasibility study, within a constructivist paradigm. Parents were taught how to use the CHAT before taking their infant home and asked to participate in semistructured interviews at four time points: before discharge (T0), 2 weeks after discharge (T1), 8 weeks after discharge (T2) and after stage 2 surgery (T3). Interviews were transcribed verbatim and thematically analysed.SettingOne tertiary children’s cardiac centre in the UK.SubjectsTwelve parents of eight infants who were discharged following first stage cardiac surgery for complex congenital heart disease, between August 2013 and February 2015.ResultsFour main themes emerged: (1) parental preparation and vigilance, (2) usability, (3) mastery, and (4) reassurance and support.ConclusionsThe study highlighted the benefit of appropriately preparing parents before discharge, using the CHAT, to enable identification of normal infant behaviour and to detect signs of clinical deterioration. The study also demonstrated the importance of providing parents with information about when and who to call for management advice and support.

scholarly journals 3D Models Improve Understanding of Congenital Heart Disease

2020 ◽  
Author(s):  
Jonathan Awori ◽  
Seth Friedman ◽  
Titus Chan ◽  
Christopher Howard ◽  
Stephen Seslar ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Parent Education ◽  
Nurse Practitioners ◽  
Congenital Heart ◽  
Medical Personnel ◽  
3D Models ◽  
Physical Models ◽  
Digital Models ◽  
3D Printed

Abstract Introduction: Understanding congenital heart disease (CHD) is vital for medical personnel and parents of affected children. While traditional 2D schematics serve as the typical approach used, several studies have shown these models to be suboptimal. Recent world-emphasis has shifted to 3D printed models to bridge knowledge and create new opportunities for experiential learning. We sought to systematically compare 3D digital and physical models for medical personnel and parent education compared to traditional methods.Methods: 3D printed and digital models were made out of MRI and CT data for 20 common CHD. Fellows and nurse practitioners used these models to explore intra-cardiac pathologies following traditional teaching. The models were also used for parent education in outpatient settings after traditional education. The participants were then asked to fill out a Likert scale questionnaire to assess their understanding and satisfaction with different teaching techniques. These ratings were compared using paired t-tests and Pearson’s correlation. Results: Twenty-five medical personnel (18 fellows; 2 nurses; 4 nurse practitioners and one attending) and twenty parents participated in the study. The diagnosis varied from simple mitral valve pathology to complex single ventricle palliation. Parent and medical personnel understanding with digital models was significantly higher than traditional (p = 0.01). Subjects also felt that physical models were overall more useful than digital ones (p=0.001). Physicians using models for parent education also perceived the models to be useful, not significantly impacting their clinical workflow.Conclusions: 3D models, both digital and printed, enhance medical personnel and parental understanding of CHD.

scholarly journals 3D models improve understanding of congenital heart disease

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Jonathan Awori ◽  
Seth D. Friedman ◽  
Titus Chan ◽  
Christopher Howard ◽  
Steve Seslar ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Parent Education ◽  
Nurse Practitioners ◽  
Congenital Heart ◽  
Medical Personnel ◽  
3D Models ◽  
Physical Models ◽  
Digital Models ◽  
3D Printed

Abstract Introduction Understanding congenital heart disease (CHD) is vital for medical personnel and parents of affected children. While traditional 2D schematics serve as the typical approach used, several studies have shown these models to be limiting in understanding complex structures. Recent world-emphasis has shifted to 3D printed models as a complement to 2D imaging to bridge knowledge and create new opportunities for experiential learning. We sought to systematically compare 3D digital and physical models for medical personnel and parent education compared to traditional methods. Methods 3D printed and digital models were made out of MRI and CT data for 20 common CHD. Fellows and nurse practitioners used these models to explore intra-cardiac pathologies following traditional teaching. The models were also used for parent education in outpatient settings after traditional education. The participants were then asked to fill out a Likert scale questionnaire to assess their understanding and satisfaction with different teaching techniques. These ratings were compared using paired t-tests and Pearson’s correlation. Results Twenty-five medical personnel (18 fellows; 2 nurses; 4 nurse practitioners and one attending) and twenty parents participated in the study. The diagnosis varied from simple mitral valve pathology to complex single ventricle palliation. Parent and medical personnel perceived understanding with digital models was significantly higher than traditional (p = 0.01). Subjects also felt that physical models were overall more useful than digital ones (p = 0.001). Physicians using models for parent education also perceived the models to be useful, not significantly impacting their clinical workflow. Conclusions 3D models, both digital and printed, enhance medical personnel and parental perceived understanding of CHD.

scholarly journals 3D Models Improve Understanding of Congenital Heart Disease

2021 ◽  
Author(s):  
Jonathan Awori ◽  
Seth Friedman ◽  
Titus Chan ◽  
Christopher Howard ◽  
Stephen Seslar ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Parent Education ◽  
Nurse Practitioners ◽  
Congenital Heart ◽  
Medical Personnel ◽  
3D Models ◽  
Physical Models ◽  
Digital Models ◽  
3D Printed

Abstract Introduction:Understanding congenital heart disease (CHD) is vital for medical personnel and parents of affected children. While traditional 2D schematics serve as the typical approach used, several studies have shown these models to be limiting in understanding complex structures. Recent world-emphasis has shifted to 3D printed models as a complement to 2D imaging to bridge knowledge and create new opportunities for experiential learning. We sought to systematically compare 3D digital and physical models for medical personnel and parent education compared to traditional methods.Methods:3D printed and digital models were made out of MRI and CT data for 20 common CHD. Fellows and nurse practitioners used these models to explore intra-cardiac pathologies following traditional teaching. The models were also used for parent education in outpatient settings after traditional education. The participants were then asked to fill out a Likert scale questionnaire to assess their understanding and satisfaction with different teaching techniques. These ratings were compared using paired t-tests and Pearson’s correlation. Results:Twenty-five medical personnel (18 fellows; 2 nurses; 4 nurse practitioners and one attending) and twenty parents participated in the study. The diagnosis varied from simple mitral valve pathology to complex single ventricle palliation. Parent and medical personnel understanding with digital models was significantly higher than traditional (p = 0.01). Subjects also felt that physical models were overall more useful than digital ones (p=0.001). Physicians using models for parent education also perceived the models to be useful, not significantly impacting their clinical workflow.Conclusions:3D models, both digital and printed, enhance medical personnel and parental understanding of CHD.

scholarly journals Karakteristik Penderita Penyakit Jantung Bawaan pada Anak di RSUP Dr. M. Djamil Padang Periode Januari 2010 – Mei 2012

2015 ◽  
Vol 4 (3) ◽  
Author(s):  
Nur Ain ◽  
Didik Hariyanto ◽  
Sovina Rusdan
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Failure To Thrive ◽  
Total Sample ◽  
Medical Record Data ◽  
Congenital Diseases ◽  
Descriptive Research ◽  
Record Data ◽  
Cause Of Deaths

Abstrak Penyakit jantung bawaan (PJB) merupakan defek lahir yang sering ditemukan dan merupakan penyebab kematian terbanyak dari semua jenis kelainan bawaan. Banyak penelitian yang menunjukkan bahwa adanya variasi secara geografik yang penting pada insiden PJB. Tujuan penelitian ini adalah untuk mengetahui variasi karakteristik dari penderita PJB anak di RSUP Dr. M. Djamil Padang. Jenis penelitian yang digunakan adalah penelitian deskriptif dengan melihat karakteristik penderita anak dengan PJB pada data rekam medik. Sampel penelitian ini adalah 55pasien anak yang menderita penyakit jantung bawaan di RSUP Dr. M. Djamil Padang dari Januari 2010 sampai Mei 2012. Mayoritas penderita adalah perempuan (61,8%), dan mayoritas umur sampel terdapat pada kelompok umur kurang dari 1 tahun (56.4%). Jenis PJB terbanyak adalah TF (21,8%) dan gejala yang paling sering dijumpai adalah sesak nafas (50,9%). Sebanyak (34,5%) penderita memiliki penyakit kongenital lain, dengan penyakit nonsindroma terbanyak adalah atresia ani dan omfalokel dengan masing-masing (22,2%) dan penyakit sindroma terbanyak adalahsindroma Down (40%). Gagal tumbuh terdapat pada (49,1%) penderita. Nilai Hb PJB sianotik lebih tinggi berbanding asianotik. Tingkat tindakan operatif kasus PJB anak di RSUP Dr. M. Djamil Padang adalah 1,8%. Terdapat variasi karakteristik dari penderita PJB yang ada di RSUP Dr. M. Djamil Padang.Kata kunci: penyakit jantung bawaan, anak, variasi karakteristik Abstract Congenital heart disease (CHD) is a common birth defect, and a leading cause of deaths linked to birth defects. Many studies show that the presence of significant geographic variation in the incidence of CHD. The objective of this study was to determine the variation of the characteristics of patients with CHD in Dr. M. Djamil Hospital Padang. This research is a descriptive research by observing at the characteristics of children with CHD using the medical record data. The total sample of this study was 55 children, which are suffering from CHD in Dr. M. Djamil Hospital Padang from January 2010 - May 2012. The results of this study showed that majority of the patients were female (61.8%), and the majority of samples are at the age group of less than 1 year (56.4%). The most common of CHD was Tetralogy of Fallot (21.8%), and shortness of breath was the highest (50.9%) symptom that had been found. A total of (34.5%)patients had another congenital diseases, the most common nonsyndromic disease are anus atresia and omfalocele (22.2%) respectively, and the most common syndromic disease is Down Syndrome (40%). Failure to thrive presents in 49.1% patients. The level of Hb in patient with cyanotic CHD is higher than the acyanotic CHD. The number of the surgery of CHD cases in children at Dr. M. Djamil Hospital Padang is 1.8%. There are variations in the characteristic of children with CHD in Dr. M. Djamil Hospital Padang. Keywords:  congenital heart disease, children, variation of characteristics

Styles of coping and social support in a cohort of adults with congenital heart disease

2004 ◽  
Vol 14 (2) ◽  
pp. 122-130 ◽  
Author(s):  
Elisabeth H. M. van Rijen ◽  
Elisabeth M. W. J. Utens ◽  
Jolien W. Roos-Hesselink ◽  
Folkert J. Meijboom ◽  
Ron T. van Domburg ◽  
...  
Keyword(s):  
Social Support ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Reference Group ◽  
Total Sample ◽  
The Social ◽  
Psychological Examination ◽  
Received Social Support ◽  
To Receive

Objective:To determine styles of coping, that is personal ways of dealing with problems, and social support, or support from the social environment, in a cohort of adults with congenital heart disease.Methods:We subjected 362 patients with congenital heart disease, aged from 20 to 46 years, belonging to five diagnostic groups, to extensive medical and psychological examination from 20 to 33 years after their first open heart surgical procedure. During psychological examination, 342 patients filled in questionnaires concerning styles of coping, specifically the Utrecht Coping List, and social support, using the Social Support List.Results:Overall, styles of coping in the total sample are comparable to those of peers in the general population, except for lower active problem solving, which can be attributed to female patients. Males with congenital heart disease showed more favourable styles of coping compared to their peers, such as higher seeking of social support, lower passive reaction patterns, and lower expression of negative emotions. Compared to the reference group, the total cohort of patients reported to receive less social support, but also to experience less discrepancies between desired and received social support, indicating feelings of independence in these adults. Females with congenital heart disease were found to seek and receive more social support compared to their male counterparts.Conclusion:Overall, few differences in styles of coping were found between the patients and their reference groups. Perceived social support in the sample of patients was favourable.

Sign in / Sign up

Export Citation Format

Share Document