Parent Experience of Care and Decision Making for Children Who Snore

Abstract

Importance-Sleep-disordered breathing (SDB) is prevalent and impacts physical and behavioral health of children. Adenotonsillectomy (AT), the primary treatment, is subject to unexplained variation in utilization which may be reduced by improving physician-patient communication and decision quality for this elective procedure.Objectives-We aimed to learn factors that influence parental experience and decision-making in pediatric SDB and AT surgery.Design-Parents of children with prior SDB evaluation participated in semi-structured interviews. Open-ended questions regarded experiences of having a child with SDB, communication with pediatric clinicians and surgeons, and experiences with AT surgery. Recordings were transcribed and analyzed for emergent themes using grounded theory methodology.Address correspondence to: Emily F Boss, MD, MPH (erudnic2@jhmi.edu), 601 N Caroline St., Baltimore MD. Phone: 410 955 9772. Fax: 410 955 0035. Author Contributions: Emily F Boss, MD, MPH: Dr. Boss conceptualized and designed the study, contributed to analysis, drafted the initial manuscript, revised the manuscript, and approved the final manuscript as submitted. Anne R Links, MS, MHS: Ms. Links carried out analysis and interpretation of the data, drafted the initial manuscript, revised the manuscript, and approved the final manuscript as submitted. Ron Saxton, MS: Mr. Saxton coordinated data collection, drafted the initial manuscript, and approved the final manuscript as submitted. Tina L Cheng, MD, MPH: Dr. Cheng contributed to the conception nd design of the study, revised the manuscript, and approved the final manuscript as submitted. Mary Catherine Beach, MD, MPH: Dr. Beach contributed to the conception and design of the study, revised the manuscript, and approved the final manuscript as submitted All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.Financial Disclosure: Authors have no financial relationships relevant to this article to disclose. Conflict of Interest:Authors have no conflicts of interest to disclose. There was no involvement by sponsors in design, data collection, analysis, drafting of the manuscript, or decision to submit for publication. No honorarium or payment was given to authors to produce this manuscript.Access to data: Dr. Boss and Ms. Links had full access to all the data in the study, and take responsibility for the integrity of the data and the accuracy of the data analysis. HHS Public Access Author Manuscript Author Manuscript Author Manuscript Author ManuscriptSetting-Interviews were conducted at locations convenient for participants and separate from the pediatric clinic.Participants-Parents (N = 11) of children aged 2-17 who had previously been diagnosed or treated for SDB.Main Measures-Themes of parental experiences and treatment decision-making processes with pediatric SDB.Results-Overarching themes related to clinical factors of SDB/AT and clinician interpersonal behaviors/communication. Parents described an urgency that ...

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

“…Anesthesia was only mentioned in 8 tweets. This finding differed from previous research indicating concerns about general anesthesia were a principal parental fear and deterrent for surgery 30 .…”

“…Studies reporting on patient-centered outcomes, including this current study, have helped to inform surgeons of shared decision-making, a collaborative process in which patients, caregivers, and providers work towards a mutually agreed-upon treatment plan 29 . Our team has previously reported qualitatively on parent experience and decision-making for sleep-disordered breathing treatment 30 as described during in-depth interviews. The current study contributes knowledge on additional parent-reported concerns not reported and more broadly identifies fears and concerns of parents.…”

“…Our research directly evaluating live patient consultations indicates that parents express concerns in <40% of encounters, and that clinicians rarely directly ask about parent concerns or fears during consultations for tonsillectomy. 30 Moreover clinicians may neglect to discuss aspects of surgery important to parents, such as anesthesia, and have a tendency towards authoritativeness 36,37 . 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 .…”

A shared decision‐making tool for obstructive sleep apnea without tonsillar hypertrophy: A randomized controlled trial

“…Shared decision making (SDM) is a collaborative process in which patients and clinicians jointly establish a treatment plan . SDM is considered the intersection of evidence‐based medicine and patient‐centered care, as constructive decision making is reliant on sound evidence‐based options .…”

Consulting Dr. Google: Quality of Online Resources About Tympanostomy Tube Placement

“…One reason for this may be that the sites were geared more to families that already had decided to undergo surgery. However, in a prior study regarding parental experience with decision making for management of sleep‐disordered breathing, parents who were provided with several therapeutic options had greater satisfaction with decision making . Only three out of 10 sites addressed anesthesia risks, which many clinicians and families deem perhaps the most significant worry with TT.…”