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Volume 4
Journal of Pediatric Care
ISSN: 2471-805X
Page 12
August 06-07, 2018 Madrid, Spain
&
JOINT EVENT
2
nd
Edition of International Conference on
Adolescent Health & Medicine
18
th
International Conference on
Pediatrics Health
Pediatrics Health 2018
&
Adolescent Health 2018
August 06-07, 2018
Parent opinion in medical care for congenital diaphragmatic hernia
Purpose:
To assess the opinions of parents of children born with Congenital Diaphragmatic Hernia on how well the medical
professionals cared for and communicated with the patients and their families.
Methods:
We reviewed the results of our survey for 161 patients between the years 1995 and 2017. This study included 53
female survivors, 64 male survivors, 27 female non-survivors, and 17 male non-survivors. Parents were asked basic subjective
questions on how well they felt they were treated and how well they were informed of their child’s diagnosis.
Results:
90.6% of survivors’ and 77.3% of non-survivors’ parents said they felt the hospital staff did well in taking care of the
patient and involved the parents in the decisionmaking process. 3.4% survivors’ and 15.9% of non-survivors’ parents responded
negatively. A total of 6.2% either didn’t respond or had no comment. When asked if the parent was given enough information
about their child’s diagnosis, 76.9% of parents of survivors and 68.2% of parents of non-survivors answered affirmatively. 19.7%
of survivors’ and 27.3% of non-survivors’ parents responded in the negative. 3.8% either had no comment or did not respond.
The participants were then asked if the patient’s doctor explained the diagnosis in terms they could easily understand. Of the
non-survivor’s families, 77.3% said “yes” and 15.9% said “no.” Of the survivor’s families, 88% responded “yes” and 6.8% “no.”
The remaining 6.2% of both survivors and non-survivors either did not know or had no comment.
Conclusion:
The vast majority of respondents agreed that their hospital experience was sufficient, there is still room to improve
within the field of medical professionals. Our collected data can offer important insight into which hospitals need development
and which institutions can be models for such development.
Biography
Dawn M. (Torrence) Ireland is the founder of CHERUBS – The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. Created in 1995,
after the birth of Ms. Ireland’s son, who was born with Congenital Diaphragmatic Hernia (CDH), she wished to create a supportive, collaborative community of families
of researchers. It was built upon a foundation of research, awareness and support – providing as many services and as much information as the budget and volunteer
system could withstand. With the encouragement of several prominent pediatric surgeons, CHERUBS began to have a presence at medical conferences in 1996. By
2000, the CDH Research Survey Database was created. In 2017, the charity was restructured. Ms. Ireland stepped away as President of CHERUBS and into the role
of President of CDH International to further the research projects that the organization is involved in. CHERUBS still exists as the family support division of CDH Interna-
tional. Currently, Ms. Ireland oversees CDH International which now runs the world’s largest natural history database of CDH, has 3 boards, employees, many volunteers,
assists over 6300 patient families in 70 countries, presents research abstracts, and works with both the NIH and the EU. Ms. Ireland also is a founding member of the Rare
Advocacy Movement and senior level patient advocate, mentors several other non-profit organizations, is a founding member of the Alliance of Congenital Diaphragmatic
Hernia Organizations, has written/edited 4 books and spends her time between the United States and Europe to continue the organization’s growth and outreach.
dawn.ireland@cdhi.orgDawn M Ireland
CDH International, USA
Dawn M Ireland, J Pediatr Care 2018, Volume 4
DOI: 10.21767/2471-805X-C3-010