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The complexity of having a child with a congenital heart defect in a developing country: A qualitative study of parental needs

Published:December 08, 2021DOI:https://doi.org/10.1016/j.pedn.2021.11.026

      Highlights

      • Parents need to feel safe in the experience of living with a child with a congenital heart defect (CHD).
      • Parents need to receive continuous, clear and accurate information with regards to several aspects of CHD.
      • Parents need support of the public health care system and social services.
      • Parents need to establish effective relationships with healthcare professionals and trust them.
      • Pediatric nurse's presence is essential in pediatric outpatient clinics to care for children with CHD.

      Abstract

      Purpose

      To explore parental needs related to their experiences of living with a child with congenital heart defect (CHD) since the diagnosis.

      Design and methods

      An interpretative qualitative study developed with nine parents of children between the ages of five months and 11 years diagnosed with CHD. Interviews were conducted at an ambulatory pediatric cardiology centre. Data were analyzed using inductive thematic analysis. The consolidated criteria for reporting qualitative research (COREQ) was followed for quality reporting. This research was approved by a research committee.

      Results

      One central theme emerged, namely ‘A desire to feel safe in dealing with the demands of CHD,’ along with two main themes. The first is ‘Looking for effective relations with healthcare professionals and health care systems’ which encompasses three types of need: (1) need for continuous, clear and accurate information; (2) need for resolution and the support of services such as the public health care system and social services; (3) need for trust in health care professionals. The second theme is ‘Looking for balance in daily life’ with two main needs: (1) maintain family functioning and (2) learn to deal with the child and CHD.

      Conclusion

      The main parental needs are related to their interactions with healthcare professionals and healthcare systems, highlighted by a need for information and trust relationships to feel safe in their daily lives.

      Practice implications

      Our results imply rethinking the nurse presence in ambulatory care, implementation of a family-centered care approach and addressing the diverse and multifaceted experiences and needs of parents and children with CHD in different health care contexts.

      Keywords

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