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

Results of a survey

Hitesh Agrawal, Oriana K. Wright, Kathleen E. Carberry, S. Kristen Sexson Tejtel, Carlos M. Mery, Silvana Molossi

Research output: Contribution to journalArticle

1 Citation (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)721-725
Number of pages5
JournalCongenital Heart Disease
Volume12
Issue number6
DOIs
StatePublished - Nov 1 2017
Externally publishedYes

Fingerprint

Coronary Vessels
Surveys and Questionnaires
Blogging
Social Media
Self-Help Groups
Health Personnel
Anxiety
Quality of Life
Psychology
Research
Population

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health
  • Surgery
  • Radiology Nuclear Medicine and imaging
  • Cardiology and Cardiovascular Medicine

Cite this

Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children : Results of a survey. / Agrawal, Hitesh; Wright, Oriana K.; Carberry, Kathleen E.; Sexson Tejtel, S. Kristen; Mery, Carlos M.; Molossi, Silvana.

In: Congenital Heart Disease, Vol. 12, No. 6, 01.11.2017, p. 721-725.

Research output: Contribution to journalArticle

Agrawal, Hitesh ; Wright, Oriana K. ; Carberry, Kathleen E. ; Sexson Tejtel, S. Kristen ; Mery, Carlos M. ; Molossi, Silvana. / Family perception of unmet support needs following a diagnosis of congenital coronary anomaly in children : Results of a survey. In: Congenital Heart Disease. 2017 ; Vol. 12, No. 6. pp. 721-725.
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