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Original Investigation |

Parent Experience of Care and Decision-Making for Children Who Snore ONLINE FIRST

Emily F. Boss, MD, MPH1; Anne R. Links, MS, MHS1; Ron Saxton, MS1; Tina L. Cheng, MD, MPH2; Mary Catherine Beach, MD, MPH3
[+] Author Affiliations
1Department of Otolaryngology–Head and Neck Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland
2Department of Pediatrics, Johns Hopkins University Children’s Center, Baltimore, Maryland
3Department of Medicine, Johns Hopkins University, Baltimore, Maryland
JAMA Otolaryngol Head Neck Surg. Published online August 25, 2016. doi:10.1001/jamaoto.2016.2400
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Importance  Sleep-disordered breathing (SDB) is prevalent and has an impact on the 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.

Objective  To identify factors are associated with parental experience and decision-making in pediatric SDB and AT surgery.

Design, Setting, and Participants  In this qualitative study, parents of children with prior SDB evaluation participated in semistructured, audiorecorded 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. Eleven parents of children ages 2 to 17 years who had previously been diagnosed or treated for SDB were identified via purposive sampling and interviewed between January and April 2015. Interviews were conducted at locations convenient for the participants and separate from the pediatric clinic. A goal of this study was to ascertain how parents perceived sharing decisions with their physicians.

Main Outcomes and Measures  Themes of parental experiences and treatment decision-making processes with pediatric SDB.

Results  Overarching themes were inclusive of (1) clinical factors of SDB and AT and (2) clinician interpersonal behaviors and communication. Parents described an urgency that led them to seek evaluation or treatment, including fear that the child would stop breathing, or behavioral and/or cognitive delays. Parents often viewed surgery as a “last resort” and had explored alternate therapies prior to seeing the surgeon. Nearly all parents feared anesthesia more than AT surgery itself. Parents described satisfaction when physicians provided them with options, engaged their child in conversation, depicted SDB visually, and were responsive or accessible to questions. Parents regarded a trusting relationship with their pediatrician, confidence in the surgeon, and inclusion in decision-making as important.

Conclusions and Relevance  While clinical factors were influential for decision-making, interpersonal factors helped parents feel comfortable and influenced their overall experience. Shared decision-making, in which parents receive evidence-based information allowing them to accurately perceive risks, benefits, and alternatives about SDB treatment in the setting of trusting clinician-family relationships, may reduce parental decision conflict and improve decision quality toward AT surgery.

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