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Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children: Results of a survey

Hitesh Agrawal1,2, Oriana K. Wright3, Kathleen E. Carberry1,4, S. Kristen Sexson Tejtel1,2, Carlos M. Mery1,5, Silvana Molossi1,2
1 Coronary Anomalies Program, Texas Children’s Hospital, Houston, Texas
2 The Lillie Frank Abercrombie Section of Cardiology, Texas Children’s Hospital, Baylor College of Medicine, Houston, Texas
3 McGovern Medical School at The University of Texas Health Science Center at Houston, Houston, Texas
4 Outcomes & Impact Services, Texas Children’s Hospital, Houston, Texas
5 Division of Congenital Heart Surgery, Michael E. DeBakey Department of Surgery, Texas Children’s Hospital, Baylor College of Medicine, Houston, Texas
* Corresponding Author: Silvana Molossi, Texas Children’s Hospital, Baylor College of Medicine, 6621 Fannin Street, WT 19345-C, Houston, TX 77030. Email:

Congenital Heart Disease 2017, 12(6), 721-725. https://doi.org/ 10.1111/chd.12473

Abstract

Background: Long-term outcome data on patients with anomalous aortic origin of coronary arteries (AAOCA) is sparse and they are often managed in a nonuniform manner. There is subjective perception of anxiety and unmet needs in these patients and families.
Methods: An online survey of 13 questions was sent to 74 families of patients with AAOCA between May and October 2015. Descriptive statistics were performed.
Results: A total of 31 (47%) families responded. Of these, 27 expressed the need to interact with other patients/families with AAOCA. The majority were interested in either face-to-face meetings (77%) or online support groups (71%). Regarding content of the meeting, 74% were interested in brief talks by medical personnel/families, 58% suggested informal interactions with families, 55% proposed a structured discussion with a moderator and 39% mentioned fun activities/games. Regarding participants in these meetings, 90% would like to include healthcare providers, 61% suggested including family friends, 58% wished to include psychologists and 16% mentioned including social workers. The families currently use various social media including Facebook (87%), YouTube (39%), Google+ (36%), and LinkedIn (32%). For future online resources, 77% of families would like a Facebook site, an informative website (58%), a blog (52%), or an open forum (29%). The majority of the families (77%) were interested in attending a dedicated AAOCA meeting.
Conclusion: There appears to be an unmet need for family support in those affected by AAOCA, a substantial life changing diagnosis for patients and families. Further research is needed to assess quality of life in this population.

Keywords

anomalous coronary arteries, congenital heart disease, family needs, sudden death, survey

Cite This Article

Agrawal, H., Wright, O. K., Carberry, K. E., Kristen, S., Mery, C. M. et al. (2017). Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children: Results of a survey. Congenital Heart Disease, 12(6), 721–725.



This work is licensed under a Creative Commons Attribution 4.0 International License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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