Skip to main content Accessibility help
×
Home
Hostname: page-component-77ffc5d9c7-kttml Total loading time: 0.678 Render date: 2021-04-22T13:29:40.604Z Has data issue: false Feature Flags: { "shouldUseShareProductTool": true, "shouldUseHypothesis": true, "isUnsiloEnabled": true, "metricsAbstractViews": false, "figures": false, "newCiteModal": false, "newCitedByModal": true }

Letter to the Editor in response to: Important knowledge for parents of children with heart disease: parent, nurse, and physician views

Published online by Cambridge University Press:  26 September 2016

Mary M. Tallon
Affiliation:
School of Nursing, Midwifery and Paramedicine Curtin University, Bentley Western Australia, Perth, Australia
Garth E. Kendall
Affiliation:
School of Nursing, Midwifery and Paramedicine Curtin University, Bentley Western Australia, Perth, Australia
Fiona Newall
Affiliation:
Department of Nursing Research The Royal Children’s Hospital Melbourne, Victoria, Australia Department of Nursing and Paediatrics, University of Melbourne, Melbourne, Victoria, Australia
Corresponding
E-mail address:
Rights & Permissions[Opens in a new window]

Abstract

Type
Letter to the Editor
Copyright
© Cambridge University Press 2016 

Knowledge and understanding for parents of children with heart disease

We read the recent paper by Daily et alReference Daily, Fitzgerald and Downing 1 published in Cardiology in the Young with great interest because it focussed on identifying information that is important to parents of children with complex heart disease. We agree wholeheartedly that identification of areas of priority for information sharing with parents and the healthcare providers who care for them is most important. For parents having knowledge about the clinical signs to look for and knowing what to do, who to call, and where to go are crucial, because healthcare providers understand that ultimately parental care matters most.

We, however, find it interesting that the specific targeted parental education in this study did not include attention to the family’s situation or issues that impact on parental knowledge and capacity building. We argue that identification of the knowledge needs of parents cannot be considered without attention to the needs and circumstances of the family in the first instance. How parents of children with serious health problems develop knowledge and act upon information depends on a range of issues that warrant mention. Some parents have better access to skills and resources than others. The range of issues that affect families can be complex and diverse – for instance, the impact of maternal emotional health on information processing and caregiving is well evidenced.Reference Berant, Mikulincer and Shaver 2 The disruption to family functioning and decision making as a result of exposure to life stress is also well understood.Reference McEwen and Gianaros 3 Rather than parents understanding information, findings show that it is more a question of confidence. Research shows that mothers who feel anxious, or have little or no social support or someone to talk to, have lower levels of confidence in their knowledge and understanding about their children’s heart disease.Reference Tallon, Kendall and Snider 4 This is important because, in practice, paediatric healthcare providers are often concerned about how parents interpret and act upon important health information they are given about their children’s care.

For parents, adjusting to the diagnosis of their child’s complex CHD and managing the demands of complex feeding regimes and care can be consuming, and these challenges will be further compounded in the presence of additional psychosocial issues. The combination of managing their circumstances and the care needs of their children, while living with the worry about a guarded health outcome and the associated parental grief and loss, can be overwhelming. These families need substantial support to develop confidence in their knowledge and understanding, in order to create the best life possible for their affected child. By assessing and understanding the family’s circumstances first, healthcare providers can identify and respond to the needs of the family, so that information that centres around pathophysiology and caregiving procedures can be tailored appropriately. In this way, assessment of the circumstances of the family could guide dissemination of knowledge and impact outcomes and child health.

References

1. Daily, J, Fitzgerald, M, Downing, K, et al. Important knowledge for parents of children with heart disease: parent, nurse, and physician views. Cardiol Young 2016; 26: 6169.CrossRefGoogle Scholar
2. Berant, E, Mikulincer, M, Shaver, P. Mothers’ attachment style, their mental health, and their children’s emotional vulnerabilities: a 7-year study of children with congenital heart disease. J Pers 2008; 76: 3165.CrossRefGoogle Scholar
3. McEwen, B, Gianaros, P. Central role of the brain in stress and adaptation: links to socioeconomic status, health, and disease (Report). Ann N Y Acad Sci 2010; 1186: 190222.CrossRefGoogle Scholar
4. Tallon, M, Kendall, G, Snider, P. Development of a measure for maternal confidence in knowledge and understanding and examination of psychosocial influences at the time of a child’s heart surgery. J Spec Pediatr Nurs 2015; 20: 3648.CrossRefGoogle Scholar

Full text views

Full text views reflects PDF downloads, PDFs sent to Google Drive, Dropbox and Kindle and HTML full text views.

Total number of HTML views: 120
Total number of PDF views: 148 *
View data table for this chart

* Views captured on Cambridge Core between 26th September 2016 - 22nd April 2021. This data will be updated every 24 hours.

You have Access

Send article to Kindle

To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Letter to the Editor in response to: Important knowledge for parents of children with heart disease: parent, nurse, and physician views
Available formats
×

Send article to Dropbox

To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

Letter to the Editor in response to: Important knowledge for parents of children with heart disease: parent, nurse, and physician views
Available formats
×

Send article to Google Drive

To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

Letter to the Editor in response to: Important knowledge for parents of children with heart disease: parent, nurse, and physician views
Available formats
×
×

Reply to: Submit a response


Your details


Conflicting interests

Do you have any conflicting interests? *