@Article{chd.12473,
AUTHOR = {Hitesh Agrawal, Oriana K. Wright, Kathleen E. Carberry, S. Kristen Sexson Tejtel, Carlos M. Mery, Silvana Molossi},
TITLE = {Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children: Results of a survey},
JOURNAL = {Structural and Congenital Heart Disease},
VOLUME = {12},
YEAR = {2017},
NUMBER = {6},
PAGES = {721--725},
URL = {http://www.techscience.com/schd/v12n6/39213},
ISSN = {3071-1738},
ABSTRACT = {<b>Background:</b> 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.<br/>
<b>Methods:</b> An online survey of 13 questions was sent to 74 families of patients with AAOCA
between May and October 2015. Descriptive statistics were performed.<br/>
<b>Results:</b> 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.<br/>
<b>Conclusion:</b> 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.},
DOI = {10.1111/chd.12473}
}