“Why and how did this happen?”: development and evaluation of an information resource for parents of children with CHD

Abstract

Background:The causes of CHD are complex and often unknown, leading parents to ask how and why this has happened. Genetic counselling has been shown to benefit these parents by providing information and support; however, most parents currently do not receive this service. This study aimed to develop a brochure to determine whether an information resource could improve parents’ knowledge about CHD causation and inheritance and increase psychosocial functioning.Methods:In development, the resource was assessed against several readability scales and piloted. Parents of children attending preadmission clinic for surgery were included. Assessments occurred pre- and post-receiving the information resource using a purpose-designed knowledge measure and validated psychological measures.Results:Participant’s (n = 52) knowledge scores increased significantly from the pre-questionnaire ( ${\overline x}\, = \,5/10$ , sd = 2.086) to post-questionnaire ( $\overline x\, = \,7.88/10$ , sd = 2.094, p < 0.001), with all aware that CHD can be caused by genetic factors after reading the brochure. Perceived personal control also increased from pre- ( $\overline x\, = \,11.856/18$ , sd = 4.339) to post-brochure ( $\overline x\, = \,14.644/18$ , sd = 3.733, p < 0.001), and many reported reduced feelings of guilt. No negative emotional response to the brochure was reported. The information provided was considered relevant (88%), reassuring (86%), and 88% would recommend the brochure to other parents. However, some wanted more emotional support and assistance in what to tell their child.Conclusions:Use of the information resource significantly enhanced parents’ knowledge of CHD causation and increased their psychosocial functioning. It is a valuable resource in the absence of genetic counselling; however, it should not replace formal genetic counselling when required.

Systematic Review of Instruments Assessing Psychosocial Adaptation and Outcomes Among Families of Children With Congenital Heart Disease

“…Thirty-nine self-report instruments were used across 61 (57%) distinct samples ( Alkan et al, 2017 ; Awaad & Darahim, 2015 ; Berant et al, 2001 ; Bevilacqua et al, 2013 ; Bishop et al, 2019 ; Blue et al, 2015 ; Bratt et al, 2019 ; Brosig et al, 2007b ; Callahan et al, 2019 ; Campbell et al, 1995 ; 1992 ; Cantwell-Bartl & Tibballs, 2017 ; Chien et al, 2021 ; Cohn, 1996 ; Coşkuntürk and Gözen, 2018 ; Davis et al, 1998 ; Denniss et al, 2019 ; Diffin et al, 2016 ; Doherty et al, 2009 ; Dulfer et al, 2015 ; Fischer et al, 2012 ; Franich-Ray et al, 2013 ; Gaskin et al, 2021 ; Guan et al, 2014 ; Hancock et al, 2018 ; Helfricht et al, 2008 ; Hoehn et al, 2004 ; Hunt et al, 2020 ; Jackson et al, 2020 ; Jordan et al, 2014 ; Kiliçarskan-Törüner et al, 2012 ; Kumar et al, 2019 ; Landolt et al, 2011 ; Lawoko & Soares, 2006 ; Li et al, 2018 ; Lisanti et al, 2017 , 2021a , b ; López et al, 2016 ; McCusker et al, 2010 ; 2012 ; McKechnie et al, 2016 ; Medoff-Cooper et al, 2020 ; Menahem et al, 2008 ; Miller et al, 2021 ; Mussatto et al, 2021 ; Pinto et al, 2016 ; Radlo ff, 1977; Rahimianfar et al, 2015 ; …”

“…The most frequently used instruments were the State-Trait Anxiety Inventory including Dutch, Chinese, Turkish, and Korean translations across 20 studies, and the Beck Depression Inventory and Brief Symptom Inventory each used across five studies. Additional instruments to assess relevant constructs including general stress ( Abell, 1991 ; Cohen & Williamson, 1988 ; Elo et al, 2003 ), burnout ( Maslach et al, 1996 ), worry ( DeVet & Ireys, 1998 ; van Rijsoort et al, 1999 ), hope ( Chan et al, 2012 ) and hopelessness ( Beck et al, 1974 ), optimism ( Scheier & Carver, 1985 ), mood ( Cheng, 2011 ), and guilt and shame ( Harder & Zalma, 1990 ) were also identified, as well as study-specific instruments assessing emotional impacts of having a child with CHD ( Blue et al, 2015 ; Hunt et al, 2020 ) and reaction to diagnosis ( Cohn, 1996 ).…”

Burden, predictors, and outcome of unconsciousness among under-five children hospitalized for community-acquired pneumonia: A retrospective study from a developing country

“…Earlier motivation and health awareness of parents during the diagnosis of the congenital anomaly might compel them to seek health care early for their vulnerable children. Several studies have shown that though not always adequate [ 33 ], parents of children having congenital anomalies used to receive various types of health awareness [ 34 , 35 ], and parents are also interested to know in detail about their children’s health problems [ 36 ]. Another reason behind this may be that pneumonia in children with congenital anomalies might not be due to the same etiology compared to those without congenital anomalies.…”

Toxic metals in pregnancy and congenital heart defects. Insights and new perspectives for a technology-driven reduction in food sources

“…Congenital heart defects (CHD), which account for nearly one-third of all major congenital anomalies and 3.3 million patients worldwide as of 2019, are defined as structural abnormalities of the heart and/or great vessels present at birth [1][2][3].…”

“…According to a recent systematic review and meta-analysis of 260 studies, the global birth prevalence of CHD increased by 10% every 5 years between 1970 and 2017, reaching a maximum of 9.4 per 1,000 live births in the years 2010-2017 [4]. Notably, over 90% of this increase is possibly due to improved diagnostics and, consequently, increased detection of milder lesions [1,4]. On the other hand, although the global all-ages death rate due to CHD declined by 60.4% from 1990 to 2019 because of advances in interventional cardiology and congenital heart surgery, CHD still represent the leading cause of spontaneous abortion, stillbirth, neonatal and infant death [2,5,6].…”