Parental and Youth Understanding of the Informed Consent Process for Pediatric Endoscopy

Jubbal, Kevin T.; Chun, Stanford; Chang, Jeremy; Zhang, Sherry; Terrones, Laura; Huang, Jeannie S.

doi:10.1097/mpg.0000000000000719

Cited by 15 publications

(19 citation statements)

References 41 publications

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“…In a study on obtaining informed consent from patients before surgical operations in Iran, it was shown that information given to the patients was insufficient and patients were not provided with enough information about the operation, type of anesthesia, possible complications, alternative treatments, period of hospitalization, and postsurgery care (14), which is in agreement with the findings of the present study. As can be seen, in questions 13 and 14 (informing the child about diagnostic and treatment procedures and considering the child's opinion in the final decision), the physicians mostly answered "in most cases no" and "sometimes", respectively.…”

Section: Discussionsupporting

confidence: 90%

Study of Obtaining Informed Consent in Pediatric Wards from the Viewpoint of Physicians and Children’s Parents

Soodabeh

Fadavi

Bazmi

2021

Arch Pediatr Infect Dis

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Background: Obtaining informed consent for diagnostic and therapeutic procedures is of great moral and legal importance, which is more important in the field of pediatrics due to its specific issues. Objectives: Obtaining informed consent in the pediatric field is specific because of many factors, including the age of the patients and the necessity of obtaining consent from parents or legal guardians. This study aimed to evaluate the process of obtaining informed consent from the viewpoint of substitute decision-makers (parents or guardians) and physicians. Attention to the differences between the views of these two groups by establishing appropriate and correct communication skills between them can lead to greater satisfaction and increased effectiveness of treatments. Methods: In this descriptive study, the data were collected through questionnaires completed by 188 parents and 23 physicians. Finally, the statistical analysis was conducted using the one-sample t test method in SPSS 16. Results: In 96.3% of the cases, parents believed that where the patient, their relatives, and the medical team disagreed about the kind of treatment, the final decision was made by the medical team. One-third of them did not receive enough information or received no information at all. Informing parents about other possible treatments, complications of the procedures, considering the patients and their relatives’ opinions for the final decision, informing the child about his/her disease and treatment plans, and informing the parents about the possible outcomes were not in the favorable range. Physicians believed that decision about the treatment was made based on the opinion of the parents and the clinical committee, and only in 3.4% of the cases, their opinion was the basis for decision-making. Conclusions: The results showed that there was a gap between the parents and physicians’ opinions about informed consent, as the physicians believed that they act as the patients’ parents wish and the parents believed that their opinion played no important role in the final decision regarding the health of their children. Thus, it seems necessary to institutionalize the culture of participatory decision-making by physicians and parents in decisions related to the diagnosis and treatment of children, and more emphasis should be placed on establishing the right relationship between treatment staff and patients and their relatives.

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Section: Discussionsupporting

confidence: 90%

Study of Obtaining Informed Consent in Pediatric Wards from the Viewpoint of Physicians and Children’s Parents

Soodabeh

Fadavi

Bazmi

2021

Arch Pediatr Infect Dis

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“…While performance of IC for procedures involving significant risk is legally mandated, many IC studies of adult patients and parents of pediatric patients have demonstrated suboptimal comprehension of key IC elements 3 4 5 6 . Similarly, we demonstrated poor comprehension of key IC elements by children and adolescents undergoing pediatric endoscopy 7 .…”

Section: Introductionmentioning

confidence: 63%

“…We employed a randomized controlled study design to evaluate the efficacy of a video intervention augmenting IC discussions in improving parental and youth IC comprehension. Sample size was based on our prior work and selected to detect a 30 % difference in comprehension scores between the intervention v. control group 7 . The local Institutional Review Board approved the study.…”

Section: Methodsmentioning

confidence: 99%

“…As performed in our prior study 7 , youth and their parents underwent separate scripted, structured interviews in private rooms to assess comprehension of key IC elements (i. e., the nature, risks, benefits, and alternatives of the procedure). Interviewees received points for understanding key IC elements and reporting qualified answers (as determined by a single rater (not the proceduralist) and according to items listed in Table 1a and predetermined based on prior work 7 ). An Informed Consent Overall Score (ICOS: range 0 – 4) for comprehension was calculated from tallied points according to Table 1a .…”

Section: Methodsmentioning

confidence: 99%

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Using media to improve the informed consent process for youth undergoing pediatric endoscopy and their parents

et al. 2017

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Background and study aims Youth undergoing pediatric endoscopic procedures and their parents demonstrate suboptimal comprehension of the informed consent (IC) process. We developed informational videos discussing key IC elements for pediatric endoscopy and evaluated their effects on youth and parental comprehension of the IC process. Patients and methods A randomized controlled trial of the video intervention was performed among youth undergoing endoscopy and their parents at an academic children’s hospital. Randomization occurred at the time of enrollment using permutated blocks. Following the IC process with the proceduralist, subjects underwent structured interviews to assess IC comprehension. An Informed Consent Overall Score (ICOS: range 0 – 4) for comprehension was calculated. Results Seventy-seven pairs of children and their parents participated. Intervention recipients (N = 37 pairs) demonstrated higher ICOS scores as compared to control counterparts (mean (standard deviation): 3.6 (0.7) v. 2.9 (0.9), intervention v. control parents, P < 0.0001 and 2.7 (1.1) v. 1.7 (1.1), intervention v. control youth, P < 0.0001). Conclusions A media intervention addressing key elements of the IC process for pediatric endoscopy was effective in improving comprehension of IC for youth undergoing endoscopic procedures and their parents.

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“…Research has demonstrated communication pitfalls, such as clinician tendencies to be verbally dominant, ask few open-ended questions, and often neglect to respond to patient fears with direct empathy 38,39 . Furthermore, parents often exhibit limited understanding about their children’s medical conditions and treatment options 40,41 . This may limit opportunity for parents or patients to gather information and express concerns during consultations.…”

Section: Discussionmentioning

confidence: 99%

Evaluation of Parental Perspectives and Concerns About Pediatric Tonsillectomy in Social Media

Hairston

Links

Harris

et al. 2019

JAMA Otolaryngol Head Neck Surg

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Importance: Tonsillectomy is common in children, but little is known about parental preferences and values concerning this surgery. Social media offers a novel opportunity to evaluate parent understanding and experience of care. Objective: We systematically evaluate posts in a well-known social media site to identify parent perspectives about tonsillectomy in children that may not be apparent in a routine clinical encounter. Design: In this mixed methods analysis, we searched Twitter© for posts (“tweets”) from 2008-2017 written by parents about their child’s tonsillectomy. We applied modified grounded theory to develop a coding taxonomy to classify these tweets. Two reviewers assessed tweets for thematic synthesis and classification. Tweets were quantified, and descriptive statistics were obtained for each theme. Setting: The posts on the social media site www.twitter.com. Participants: A sample of over 700 adult American parents of children who received or will receive a tonsillectomy and posted on Twitter. Main Outcomes and Measures: Themes of parent experiences and perspectives about their child’s tonsillectomy. Results: Of 5801 tweets retrieved, 782 satisfied our inclusion criteria. Tweets fell into overarching themes of 1. procedural concerns (n=549, 70.2%) and 2. attitudes/experiences (n=498, 63.7%). Common tweets related to procedural concerns regarded surgical indication (“sick for months”; n=55,7.0%), recovery [n=227, 29.0%; including child’s attitude (“she is nervous”; n=89, 11.4%) nutrition (“won’t eat”; n=89, 11.4%), and parental experience (“harder on the parents than the kid”;(n=87, 11.1%))]. Common tweets regarding attitudes/experiences included tenor of overall care (“yay for tonsil surgery!”; n=155, 19.8%), and fears/apprehensions (“frankly, I’m terrified”; n=178, 22.8%). Conclusions and Relevance: This analysis provides insight into parent perspectives on pediatric tonsillectomy. Parents commonly tweet concerns about surgery that may not be recognized in routine clinician-parent dialogue. Findings may be used to guide clinicians in educating and counseling parents, and further engaging parents and children in shared decision-making for tonsillectomy.

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Parental and Youth Understanding of the Informed Consent Process for Pediatric Endoscopy

Cited by 15 publications

References 41 publications

Study of Obtaining Informed Consent in Pediatric Wards from the Viewpoint of Physicians and Children’s Parents

Study of Obtaining Informed Consent in Pediatric Wards from the Viewpoint of Physicians and Children’s Parents

Using media to improve the informed consent process for youth undergoing pediatric endoscopy and their parents

Evaluation of Parental Perspectives and Concerns About Pediatric Tonsillectomy in Social Media

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