Background: Congenital diaphragmatic hernia (CDH) diagnosis in an infant is distressing for parents. Parents often feel unable to absorb the complexities of CDH during prenatal consultations and use the internet to supplement their knowledge and decision making.
Objective: We aimed to examine the content and quality of publicly available, internet-based CDH information.
Methods: We conducted internet searches across 2 popular search engines (Google and Bing). Websites were included if they contained CDH information and were publicly available. We developed a coding instrument to evaluate websites. Two coders (FS and KS) were trained, achieved interrater reliability, and rated remaining websites independently. Descriptive statistics were performed.
Results: Searches yielded 520 websites; 91 met inclusion criteria and were analyzed. Most websites provided basic CDH information including describing the defect (86/91, 95%), need for neonatal intensive care (77/91, 85%), and surgical correction (79/91, 87%). Few mentioned palliative care, decisions about pregnancy termination (13/91, 14%), or support resources (21/91, 23%).
Conclusions: Findings highlight the variability of information about CDH on the internet. Clinicians should work to develop or identify reliable, comprehensive information about CDH to support parents.
With an incidence of 1:2500 live births, congenital diaphragmatic hernia (CDH) is a relatively common, yet complicated and potentially devastating diagnosis . CDH can cause neurodevelopmental delays, chronic lung disease, gastroesophageal reflux, hearing loss, and even death [ ]. As a result, parents whose fetus or newborn is diagnosed with CDH face decisions about extracorporeal membrane oxygenation (ECMO), management of long-term CDH complications, and potential plans for end-of-life care.
A diagnosis of CDH triggers numerous emotions, making it difficult for parents to absorb and process the information initially presented to them during a clinical visit [- ]. Typically, parents receive this diagnosis and the complex information in a single prenatal visit. Many parents do not feel that one consultation provides enough time to learn about the diagnosis and its implications [ ]. However, most parents want to engage in decisions regarding their baby’s care during this time, working with clinicians to support the decision-making process [ - ].
When met with uncertainty, parents often search for medical information outside of clinical encounters to make informed choices [- ]. The internet is a popular resource for patients and families facing a difficult diagnosis such as CDH [ - ]. Despite its popularity, little is known about the comprehensiveness of internet-based CDH information [ ].
This study aimed to evaluate the content and quality of internet-based information parents might find about CDH. Results could support the development or updating of websites to facilitate parental education and decision making about CDH.
We conducted searches using 9 different terms on Google: “Congenital diaphragmatic hernia”, “CDH in a baby”, “Congenital diaphragmatic hernia surgery”, “Congenital diaphragmatic hernia NICU”, “Baby with stomach in chest”, “Baby with hole in diaphragm”, “CDH support for parents”, “Affording CDH/NICU costs”, and “CDH parent support website”. These search terms were chosen due to their use of lay-person terminology, and based upon clinical discussions with families of patients with CDH. We reviewed these terms with several practicing clinicians treating families facing this decision. We repeated searches on Bing until it was clear that the results produced the same websites. As most (91%) people do not look beyond the first page of search results , we included the first 3 pages for completeness.
Websites were included if they contained: (1) basic CDH information; (2) resources for patients with CDH or their parents; and (3) discussion boards, chat rooms, or social support information regarding CDH. Exclusion criteria included paid advertisements, legal sites, non-US sites, sites targeted to medical professionals, definition-only sites (ie, dictionary.com), sites requiring logins, and sites not about CDH.
We coded included sites’ content on the first page plus 2 clicks from the first page. Content linked to external sites was not coded. The study did not involve human patients, thus institutional review board approval was unnecessary.
We developed a coding instrument of 133 items in the following categories: (1) basic definition or description of CDH; (2) prenatal care for CDH; (3) typical hospital course for patients with CDH; (4) ECMO procedure and complications; (5) CDH outcomes; (6) prenatal CDH surgery; (7) postnatal CDH surgery; and (8) financial, emotional, or personal support. This instrument was reviewed for accuracy and completeness by 2 neonatologists with experience in treating CDH.
The first 7 websites were coded by 2 raters (FS and KS) to check for consistency in coding. Cohen κ was 0.75 with a 79% agreement at this stage. The 2 raters met, discussed discrepancies, and reached consensus, revising the codebook where necessary. Once Cohen kappa showed a high level of agreement (κ>0.80; agreement >90%), remaining sites were divided and scored by 1 of the 2 coders (FS or KS). The 2 coders remained in contact throughout the process to ensure consistency. We analyzed the data using descriptive statistics.
The searches yielded 520 websites. A total of 368 websites were excluded initially because they were duplicates (n=264, 71.7%), advertisements (n=91, 24.7%), or scholarly articles intended for medical professionals (n=37, 10.1%). Of the remaining 152 websites, 61 (40.1%) did not meet additional inclusion criteria about CDH content. Of the 91 analyzed sites, most were developed by academic medical centers (n=53, 58%), general medical knowledge sources (n=10, 11%), or nonprofit organizations (n=10, 11%).
Most websites described basic CDH information (86/91, 95%), types of CDH (52/91, 57%), implications for prenatal care (55/91, 60%), or variation in clinical acuity (56/91, 62%;). Websites infrequently mentioned various complications of CDH. Many did not mention treatment options such as pregnancy termination, palliative care, or a compassionate delivery. Only 13/91 (14%) sites mentioned pregnancy termination as an option. Only 4/91 (4%) discussed the possibility of palliative care or compassionate delivery. There was a paucity of discussion around financial, emotional, or informational support for the family.
|Number of websites (%)|
|Gave description or definition of CDH||86 (95)|
|Mentioned types of CDH||52 (57)|
|Discussed how CDH is diagnosed||74 (81)|
|Discussed prenatal care for CDH||55 (60)|
|Mentioned admission to the neonatal intensive care unit||77 (85)|
|Discussed potential need for a breathing tube/intubation||73 (80)|
|Discussed postnatal surgery||79 (87)|
|Discussed variation in clinical acuity||56 (62)|
|Discussed possibility of death from CDH||60 (66)|
|Potential complication of CDH|
|Discussed risk of neurodevelopmental delays from CDH||45 (49)|
|Discussed risk of chronic lung disease||46 (51)|
|Discussed risk of hearing difficulties due to CDH||26 (29)|
|Discussed risk of gastroesophageal reflux||49 (54)|
|Discussed the potential for the hernia to recur||19 (21)|
|Discussed risk of failure to thrive/inability to gain weight||35 (38)|
|Discussed potential for ECMOb||66 (73)|
|If mentioned ECMO, site described complications of ECMO||21 (23)|
|Discussed the possibility of prenatal surgery||35 (38)|
|Discussed possibility of termination of pregnancy||13 (14)|
|Support system information|
|Contained additional reading material for parents regarding the diagnosis of CDH||24 (26)|
|Discussed financial support||15 (16)|
|Discussed housing options while in the neonatal intensive care unit||12 (13)|
|Contained emotional/personal support resources for families||21 (23)|
|Provided information regarding mental health resources||9 (10)|
aCDH: congenital diaphragmatic hernia.
bECMO: extracorporeal membrane oxygenation.
Access to comprehensive, accurate information about CDH is critical to supplement clinical visits and support parents with infants with a CDH diagnosis. We examined the quality of available CDH information on the internet. Many websites described basic information about CDH, including a description of CDH and possible medical interventions. However, few websites described possible negative outcomes, complications, and care options aside from full medical interventions.
When searching for CDH information, families can become overwhelmed with the number of results obtained. Our study used search terms and phrases similar to what a typical family might use. We found numerous websites that were not accessible or relevant to families, highlighting the difficulty in conducting generalized searches about CDH. Families could become frustrated when attempting to find comprehensive and reliable information; clinicians could supply a list of high-quality websites for parents. The use of websites with quality information about CDH hosted by reputable institutions or organizations can support families.
The scarcity of discussion around palliative care, compassionate delivery, and pregnancy termination should be noted, as these are reasonable options for families. One CDH parent advocacy website mentioned the lack of in-person discussion about palliative care or compassionate delivery . At a time when parents desire involvement in care, they should have access to information about all reasonable options for their infants. Parents should also be aware of the complications of CDH to be as informed as possible when making care decisions.
These data should be considered within the context of some limitations. Searches were completed once (October 2019) with a single update (January 2020). Websites could have edited information after the search and coding process. We used 2 popular search engines (Google and Bing), but families could find additional sites not identified. We also used experience with previous CDH families to guide search term creation; however, parental input on search terms may have yielded different results. We excluded social media sites that required a login, although some social media sites could provide information or support through peer groups. We included information 2 clicks from the main page, but parents could go further into the sites. We did not analyze whether the information presented on websites was clear; future studies can use tools such as the Clear Communication Index or the Patient Education Materials Assessment Tool (PEMAT) to analyze specific sites once sources are identified and considered for use with patients. Finally, the coders were able to traverse the websites with relative ease, but parents might not be as savvy with the internet, and thus results could overestimate information available.
This study highlights a need for more comprehensive websites with information about CDH. Institutional or clinic-based materials might better support families than internet resources as families navigate through CDH information seeking and decision making.
The authors thank Krista Cooksey for her input on manuscript formatting and proofing.
Conflicts of Interest
- Dara B, Camilia M. Congenital diaphragmatic hernia. In: Neonatology Review (2nd Edition). University of California: Dara Brodsky and Camilia Martin; Jan 01, 2010.
- Götzmann L, Schönholzer SM, Kölble N, Klaghofer R, Scheuer E, Zimmermann R, et al. [Suspected fetal malformation in ultrasound examination: effects on the psychological well-being of pregnant women]. Ultraschall Med 2002 Feb;23(1):33-40. [CrossRef] [Medline]
- Detraux JJ, Gillot-de Vries F, Vanden Eynde S, Courtois A, Desmet A. Psychological impact of the announcement of a fetal abnormality on pregnant women and on professionals. Ann N Y Acad Sci 1998 Jun 18;847(1 ULTRASOUND SC):210-219. [CrossRef] [Medline]
- Drotar D, Baskiewicz A, Irvin N, Kennell J, Klaus M. The adaptation of parents to the birth of an infant with a congenital malformation: a hypothetical model. Pediatrics 1975 Nov;56(5):710-717. [Medline]
- Langer M, Ringler M. Prospective counselling after prenatal diagnosis of fetal malformations: interventions and parental reactions. Acta Obstet Gynecol Scand 1989 Jan;68(4):323-329. [CrossRef] [Medline]
- Aite L, Trucchi A, Nahom A, Casaccia G, Zaccara A, Giorlandino C, et al. Antenatal diagnosis of diaphragmatic hernia: parents' emotional and cognitive reactions. J Pediatr Surg 2004 Feb;39(2):174-8; discussion 174. [CrossRef] [Medline]
- Partridge JC, Martinez AM, Nishida H, Boo NY, Tan KW, Yeung CY, et al. International comparison of care for very low birth weight infants: parents' perceptions of counseling and decision-making. Pediatrics 2005 Aug 01;116(2):e263-e271. [CrossRef] [Medline]
- Pector EA. Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death. J Perinatol 2004 Jan 22;24(1):4-10. [CrossRef] [Medline]
- Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents' perspective. J Perinatol 2007 Aug 19;27(8):510-516. [CrossRef] [Medline]
- Weiss EM, Xie D, Cook N, Coughlin K, Joffe S. Characteristics Associated With Preferences for Parent-Centered Decision Making in Neonatal Intensive Care. JAMA Pediatr 2018 May 01;172(5):461-468 [FREE Full text] [CrossRef] [Medline]
- Khoo K, Bolt P, Babl F, Jury S, Goldman RD. Health information seeking by parents in the Internet age. J Paediatr Child Health 2008;44(7-8):419-423. [CrossRef] [Medline]
- Rahi JS, Manaras I, Barr K. Information sources and their use by parents of children with ophthalmic disorders. Invest Ophthalmol Vis Sci 2003 Jun 01;44(6):2457-2460. [CrossRef] [Medline]
- Goldman RD, Macpherson A. Internet health information use and e-mail access by parents attending a paediatric emergency department. Emerg Med J 2006 May 01;23(5):345-348 [FREE Full text] [CrossRef] [Medline]
- Walsh AM, Hamilton K, White K, Hyde MK. Use of online health information to manage children's health care: a prospective study investigating parental decisions. BMC Health Serv Res 2015 Apr 02;15:131 [FREE Full text] [CrossRef] [Medline]
- Kwon JH, Kye S, Park EY, Oh KH, Park K. What predicts the trust of online health information? Epidemiol Health 2015 Jun 28;37:e2015030 [FREE Full text] [CrossRef] [Medline]
- van Deursen AJ, van Dijk JA. Using the Internet: Skill related problems in users’ online behavior. Interacting with Computers 2009 Dec;21(5-6):393-402. [CrossRef]
- Breath of Hope Inc. Expecting a CDH Baby?. 2013. URL: http://breathofhopeinc.com/about-congenital-diaphragmatic-hernia/expecting-a-cdh-baby# [accessed 2021-09-27]
|CDH: congenital diaphragmatic hernia|
|ECMO: extracorporeal membrane oxygenation|
|PEMAT: Patient Education Materials Assessment Tool|
Edited by S Badawy, MD, MS; submitted 25.05.21; peer-reviewed by J Niehaus, J Anadkat, S Rush; comments to author 18.06.21; revised version received 23.06.21; accepted 12.07.21; published 19.10.21Copyright
©Frank Coyle Soltys, Kimi Spilo, Mary C Politi. Originally published in JMIR Pediatrics and Parenting (https://pediatrics.jmir.org), 19.10.2021.
This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Pediatrics and Parenting, is properly cited. The complete bibliographic information, a link to the original publication on https://pediatrics.jmir.org, as well as this copyright and license information must be included.