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

Journal article
Authors Kawther Elissa
Carina Sparud Lundin
Åsa B. Axelsson
Salam Khatib
Ewa-Lena Bratt
Published in Journal of Family Nursing
Volume 24
Issue 4
Pages 585-611
ISSN 1074-8407
Publication year 2018
Published at Institute of Health and Care Sciences
Pages 585-611
Language en
Links https://doi.org/10.1177/10748407188...
Keywords adolescent, child, congenital heart disease, parents, Palestinian, qualitative
Subject categories Nursing

Abstract

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.

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