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Boss EF, Links AR, Saxton R, Cheng TL, Beach MC. Parent Experience of Care and Decision Making for Children Who Snore. JAMA Otolaryngol Head Neck Surg. 2017;143(3):218–225. doi:https://doi.org/10.1001/jamaoto.2016.2400
What factors influence parental experience and decision making in pediatric sleep-disordered breathing (SDB) and adenotonsillectomy (AT) surgery?
In this qualitative study, interviews with 11 parents of children previously treated for SDB indicated that choice for AT is influenced most by clinical factors, such as disease severity, surgical risks and benefits, but also by interpersonal factors, including physician-family communication and interpersonal relationships.
Parental decisional conflict and overutilization of AT may be mitigated when clinicians share clinical information on risks and benefits of all treatment options with parents and communicate in a family-centered manner.
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.
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.
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.
Sleep-disordered breathing (SDB) is a spectrum of obstructive breathing behaviors ranging from primary snoring to obstructive sleep apnea.1 Sleep-disordered breathing affects up to 20% of children2 and is more prevalent in children with comorbidities including obesity and trisomy 21.3,4 Surgical removal of the tonsils and/or adenoids (adenotonsillectomy [AT]) is the primary treatment for pediatric SDB.1,5 Adenotonsillectomy is among the most common major surgical procedures performed in children in the United States, accounting for more than 500 000 cases annually.5,6 However, there is some concern expressed by both scientific literature and public lay press about AT, including its overuse in some populations and underuse in others.7,8 Indeed, a 5-fold difference in tonsillectomy rates has been observed across US regions, independent of insurance or race/ethnicity.8,9 Likewise, there has been significant variation noted in preoperative testing, perioperative care, and cost for SDB and AT.10-13 Although clinical practice guidelines for tonsillectomy in children14 have helped to facilitate treatment options and standardize key aspects of care, there are still many decisions left to the individual physician and family.
Critics of high AT utilization have stressed that shared decision making (SDM) may mitigate unexplained variation in clinical care and utilization for this common elective procedure.15 Shared decision making is a collaborative process in which patients and clinicians work together to make a treatment plan.16 Shared decision making may reduce indiscriminate use of medical interventions and unwarranted variation of care by promoting patients’ involvement in their own treatment.17 In the SDM process, patients and families express their personal values and treatment goals and preferences, and clinicians share information about clinical care informed by scientific evidence. The patient or parent is thus able to make a collaborative, joint decision with the physician that is evidence-based and consistent with best practices.16,18 Research on SDM, particularly the manner in which risks and benefits might be presented to nonmedical individuals, has been referenced as a critical research gap in otolaryngology.19
Given increased attention to quality of care, patient and family centeredness, and SDM in current health practice, understanding patient-centered outcomes for specific conditions and treatments is a national research priority.20 A key facet of patient-centered outcomes is stakeholder engagement to inform research questions, methods, and outcome measures. Little attention has been devoted to understanding stakeholder perspectives or priorities in care of children with SDB. Parents act as decision-makers and proxies for the child and are key stakeholders to inform research and clinical care pathways. This study aimed to engage parents of children with SDB to understand their care experiences and decision making for diagnosis and treatment of their children’s SDB.
We used purposive sampling to identify and recruit parents for interviews.21 Parents of children previously diagnosed as having or treated for SDB ages 2 to 17 years were recruited from pediatric clinics and public community forums in the greater Baltimore, Maryland, area. No parents of children with comorbidities, including severe asthma or genetic syndrome, were recruited to participate in this study. Recruitment methods included flyers hung in clinics and public locations, email recruitment blasts to community parent listservs, and word of mouth from pediatricians and surgeons who were notified about the study. Between February and June 2015, 11 parents participated in individual interviews pertaining to experiences of having a child with SDB, and seeking evaluation and treatment for symptoms. Written informed consent was obtained from each parent in person prior to his or her interview. Parents received $25.00 for study participation. The Johns Hopkins University institutional review board approved the study protocol.
Parents participated in individual semistructured interviews led by facilitators trained in qualitative research. Interviews were conducted at locations convenient for the participants and separate from the pediatric clinic, such that participants could feel comfortable discussing their experiences with anonymity. Interviewers asked open-ended questions to explore parents’ treatment decision-making processes. Questions followed an interview guide with topics pertaining to experiences of having a child with SDB, recognizing and seeking evaluation or treatment for symptoms of SDB, information provided by both pediatric clinicians and surgeons about options for treatment (eg, surgery, alternative treatment), communication with pediatric clinicians and surgeons, and perioperative experiences with AT surgery. Participants also completed questionnaires to report parent and child demographic information, treatment and testing pursued, and changes in perceived severity of symptoms following treatment.
Interviews were audiorecorded and transcribed, and subsequently analyzed using a grounded theory methodology.22 A taxonomy of emergent themes was developed through line-by-line coding of 2 initial transcripts, and subsequently verified by applying those codes to a third transcript as a means of source triangulation. All transcripts were then thematically coded using ATLAS.ti qualitative analysis software. Major themes were summarized and compiled with representative quotations from deidentified respondents.
Eleven parents were interviewed between January and April 2015. Participant characteristics are shown in Table 1. Parent comments were classified according to principal categories related to (1) clinical or disease-specific factors in SDB health care experiences and (2) interpersonal factors, communication, and decision making for SDB treatment. Several parents commented on alternative diagnostic or treatment options, which were included for analysis given the significance of providing treatment alternatives in SDM approaches.
Comments were classified into 4 dimensions of the overarching clinical factors theme. These clinical themes and dimensions, along with expanded key representative quotations, are demonstrated in Table 2.
Parents described how they first recognized that their child’s snoring was a cause for concern. All but 1 parent reported recognition of snoring and its severity, often commenting on the level of noise their children made (“If you laid next to her she sounded like a grizzly bear”). Cessation of breathing at night was the symptom of greatest concern. Parents described clinical concerns through an emotional lens, often expressing fear (“Sometimes it sounded like she stopped breathing…so I was scared”). Cognitive and behavioral delays also led parents to seek treatment (“He would become aggressive”). One mother described her lack of knowledge about significance of SDB (“I just thought, ‘Oh, babies are noisy’”).
Parents detailed their experiences with diagnostic testing and treatment alternatives for SDB, and commented on their reluctance to proceed with surgical treatment unless they had exhausted all other options. Most parents interviewed (82%) had children who had undergone polysomnography (PSG, or “sleep study”) and could comment on their experiences. Some found PSG burdensome (“a lot to deal with”), and others were grateful for the yielded results, as it validated their decision for surgery (“The sleep study was huge in showing [surgery] was necessary”).
Some parents elaborated on adverse effects of nasal steroid use (“His attitude, his demeanor…it was horrible”), or observation (“He’s having me watch her at night”). Other treatments that had been attempted included flushing of the ears with water, craniosacral therapy, and oral allergy medications. Although not all parents tried alternative treatments, those who did tended to perceive them as being ineffective (“the tonsils never went down”).
The most common reason parents chose surgical intervention with AT for their children was potential amelioration of harmful symptoms. Fear of a child stopping breathing at night was stated as a primary motivation for choosing surgical intervention: “That she would stop breathing, that scared me, like I thought she would stop and wouldn’t start back up, so that was my concern if she didn’t have the tonsils taken out.”
Most parents also identified concern for behavioral or cognitive symptoms, including the presence of ADHD, referencing these issues as “pushing them over the edge” toward choosing surgery: “I had read that [ADHD] can exacerbate the symptoms…My first concern was her behavior.”
Other noteworthy parental perceptions of surgery included views of AT as curative, views of choosing surgery only after other options were exhausted (“I’m very reluctant to do [surgery] because I really try not to access Western medicine”), worries about repercussions of not choosing surgery (“[the doctor] said, ‘If you do not get the surgery, he’ll have developmental issues and he’ll be behind’”) and, for 2 parents, regret they had not pursued surgery earlier (“If we would have done it at that moment, I don’t think he’d be as far behind”).
Factors parents associated with reluctance to choose AT centered on potential surgical risks. Some parents mentioned concerns about postoperative pain, potential relapse of SDB, and bleeding. Risks of general anesthesia, however, dominated perspectives on reasons parents would avoid surgery for their children (“I was convinced she could die because of anesthesia”). Two parents directly stated that the surgery itself was less frightening than anesthesia: “Your little baby is being put to sleep…the actual tonsillectomy and adenoidectomy I wasn’t concerned about.”
Themes, dimensions, and expanded representative quotes demonstrating the significance of physician interpersonal behaviors and communication are shown in Table 3. Both pediatric primary care clinicians and surgeons were referenced.
Personal characteristics specifically related to the surgeon had either a positive (“everyone was very, very, very nice. It eased our fears and made us so comfortable”) or negative (“I felt a little judged by him”) impact on the parent’s experience. Pervasive in these comments were accounts of the impact of the surgeon’s interaction with the child. Some parents emphasized positive experience of the surgeon’s engaging children in play, explaining the treatment process, and comforting children.
A prevalent factor noted by parents was responsiveness of the clinicians. When physicians, both pediatricians and surgeons, were responsive to parents’ needs, answered questions, remained supportive, and made themselves available, parents reported a more favorable health care experience (“She got back to me, so I felt very comfortable about what needed to happen”). Availability of the physician, even by administrative or office proxy, satisfied parents and allowed them to feel informed and seek information (“I do feel it was easy to be able to communicate, even if it was via the coordinator”).
Many parents also discussed importance of information-sharing by the physician. Physician disclosure of medical evidence or expectations aided in decision making (“The percentage of people whose apnea had been resolved with [AT] was a really big factor for me”), while discrete and thorough information about the overall treatment process was spoken of as improving quality of the parents’ experience (“every single specialist told us exactly what was going to happen, what to expect when he wakes up”). Parents viewed being given any type of information, particularly in both verbal and written format, positively (“He gives us a very detailed printout…based on what we talked about so that we can revisit all of that stuff”). Lack of information, on the other hand, had a negative effect on parent experiences (“[The surgeon said] ‘we don’t know what they do but we’ll take them out anyway’…That was a negative”).
Parents commented on the importance of a trusting relationship, most frequently with the pediatric clinician, and also confidence portrayed by the surgeon. Several parents stated that they felt comfortable with seeking specialty evaluation and consulting with an otolaryngologist because they trusted their pediatricians’ judgment (“I trust [my pediatrician]. Whenever he’s sent me to an outside [referral], I’ve always had a good experience”). Some parents commented specifically on the pediatrician’s inclusion in the consultation and treatment process (“You feel included as a part of it…that feeling that, let’s figure this out together”). Many also seemed to identify their pediatricians’ insight in acknowledging clinical factors related to decision making.
Two parents noted more brief relationships with otolaryngologists than with pediatricians, emphasizing that comfort and confidence, but not longevity of a relationship, influencing decision making (“I think I only met her twice”). Several parents noted the importance of feeling confident in their surgeon (“…and if I was taking him to somebody that I wasn’t confident in as far as the surgery? Then I would have been a little more hesitant”).
This study identifies pertinent themes that have an impact on parental experience and decision making in the diagnosis and treatment process for children with SDB. The study also supports the concept that qualitative parent experiences are applicable to and important for SDB decision making. It is one of the only studies to address parent experience and decision making for SDB treatment. This issue bears significance because AT, the most common treatment, is elective; there are few definitive criteria for treatment decisions; and a recent randomized clinical trial demonstrated good but only moderate efficacy of AT compared with watchful waiting.23,24 In this analysis, while physician communication and information-sharing contributed comfort and thus a better overall care experience, parents were most driven to choose treatment based on severity of clinical factors.
Some parents viewed clinical factors rationally, weighing benefits or risks of SDB and surgery. Others viewed these emotionally, portraying understanding of risks and benefits with depictions of fear, “failing,” and personal responsibility. Only 2 parents spoke discretely of the common AT complications of postoperative bleeding (3%-5%) or dehydration (≤8%). Most parents, however, elaborated on the risks of general anesthesia, which has an approximately 1 in 300 000 chance of serious complications (eg, mortality).25,26 The disparate manners in which parents may approach decision making, and the propensity for parents to be emotionally affected by risks and benefits of treatment, emphasize the necessity for clinicians to clearly educate parents on the risks of untreated SDB or of AT, and likewise benefits or unknowns, to ensure that their perceptions of the condition and surgical experience are realistic.
When parents spoke of communication with their physicians, they rarely mentioned deciding for or against surgery, but instead indicated quality of their overall experiences based on these interactions (eg, greater comfort with process when physicians interacted with children, physician making parents “feel part of it”). Optimal surgeon behaviors noted by parents have been previously evaluated. Both “thoroughness” of care, including question answering and explanation of treatment and follow-up, and engagement with the child are prioritized and greatly valued by parents.27,28 These findings emphasize that physician communication, including multimodal information, accessibility, and interpersonal style is important to parents and improves their experience of care, which may augment their ability to make higher-quality decisions.27,29
A goal of this study was to ascertain how parents perceived sharing decisions with their physicians. Although few parents directly spoke of SDM in its classic definition,30 they commented on the importance of longitudinal, supportive relationships with their pediatricians, which facilitated their decisions. It is notable that parents placed emphasis on interpersonal and communication behaviors exhibited by their pediatricians and spoke of processing a decision for surgery, often before meeting with the otolaryngologist. However, parents spoke more specifically about having confidence in their child’s surgeon, with less emphasis on particular interpersonal skills such as kindness or empathy. It is possible that in the case of AT, SDM takes place more commonly between parents and pediatricians, and that surgical decisions are made prior to the child reaching the specialist. Prior literature31 supports the claim that SDM may be appropriate in the setting of chronic disease, indicating its beneficial use with a physician seen more regularly (primary care clinician) than irregularly (surgeon).
The potential impact of SDM on utilization of elective surgery, such as AT, is not entirely clear. We recently published a systematic review16 that included some studies that demonstrated a decrease in choice for surgery with use of shared decision making, but many others that showed no difference. Although there are no clear scientific data to support overuse of AT, many studies8-10,12,13 allude to variation in utilization, care practice patterns, perioperative care, and costs that are not solely explained by patient or physician characteristics. Furthermore, black race/ethnicity and low socioeconomic status have been shown to predispose children to SDB and its sequelae; however, the lack of higher surgical rates suggests potential underuse of AT in these minority populations.9,24,32 Finally, the Childhood Adenotonsillectomy Study23,24 shows a large proportion of children improving or resolving SDB symptoms and sleep parameters after a period of watchful waiting without surgery, suggesting some clinical equipoise for this procedure. Findings from the current study suggest that future initiatives to mitigate unexplained AT care variation should include primary care clinicians to facilitate SDB recognition, expedite specialty referrals, learn information and decision-making preferences of families, and engage parents in early treatment considerations.16 Development of clear methods to document and abstract use of SDM through electronic health records may allow for future analysis of SDM effect on geographic variation in AT.
To our knowledge, this is the first study to qualitatively depict parent and stakeholder experiences of care and decision making about AT for pediatric SDB. There were certain limitations. First, the small sample size is noted. Despite a large catchment area, multiple attempts and venues of advertisement, and greater initial responses of interest in study participation, we ultimately could confirm interviews with only 11 parents within the time and resources able to be allotted to the project, demonstrating a response rate of 23.9%. As such, in using a purposive but not quota qualitative sampling strategy, the demographic distribution of parents was minimally heterogeneous according to race, sex, and socioeconomic status.21 There was no screening for severity of SDB or other clinical factors that may have had an impact on decisions for parents. This is particularly relevant considering that SDM may be most beneficial for children with mild SDB and obstructive sleep apnea, where there is more clinical equipoise as to treatment options of AT or watchful waiting.23 Despite this limitation, we were able to meet theme saturation and found synthesis and reporting of these parent experiences to be a valuable complement to quantitative research on SDB and AT, which is more inclusive of patient heterogeneity. We are planning future patient-centered outcomes analyses that aim to garner experiences, through sources other than direct interviews, from a wider sampling of parents.
Moreover, the data collected through these parent interviews did not identify specific clinical recommendations or concordance with evidence-based guidelines, and therefore perspectives from parents who may have wanted surgery when it was not indicated or refused surgery when it was clearly indicated are not provided. In addition, we were unable to perform a detailed subgroup analysis differentiating perceptions of otolaryngologists and pediatricians, which may have supported assumptions in the relative importance of each clinician’s role in the decision-making process. Finally, although data was double-coded to reduce bias, qualitative analysis by nature contains a degree of subjectivity, and these findings are not generalizable to the overall population but rather represent a group of Baltimore parent perspectives.
Despite these limitations, this analysis presents a unique stakeholder analysis of factors that contribute to parent experience of care and decision making for children with SDB. It serves as proof of concept that qualitative analysis of family-centered outcomes and parent perspectives is an important contribution to research and practice for children with SDB. It emphasizes the manner in which clinical factors and medical information are influential in decision making, and suggests that communication and interpersonal factors are important for parents’ perceptions of their health care experience, potentially leading to higher decision quality. Further research should seek to identify the respective roles of the pediatrician and surgeon, and explore where the decision to have surgery is truly “made” to best direct dissemination of educational and policy initiatives about AT for SDB.
A multitude of factors influence parental experiences of care and decision making for this very common pediatric health problem, including clinical severity of SDB, child quality-of-life and behavior, anticipated risks of surgery, outcomes of treatment, and health care clinician-patient-family communication. Shared decision making may have the potential to reduce unwarranted variation in AT to the extent that parents receive clinical information from their physicians that allows them to accurately perceive the risks and benefits of surgery and anesthesia, and only in the setting of trusting interpersonal relationships. When physicians (both surgeons and pediatric clinicians) communicate in a family-centered and interpersonal manner, parents are able to make informed decisions without the external constraint of mistrust, and therefore experience less decision distress. Findings from this study will be used to inform ongoing and future patient-oriented research surrounding family experience, decision making, and health care utilization for children with SDB, guide development patient-centered outcome measures, and, advise family-centered communication strategies for physicians treating children with SDB.
Corresponding Author: Emily F. Boss, MD, MPH, Department of Otolaryngology–Head and Neck Surgery, Johns Hopkins University School of Medicine, 601 N Caroline St, Baltimore, MD 21287 (email@example.com).
Accepted for Publication: June 30, 2016.
Published Online: August 25, 2016. doi:10.1001/jamaoto.2016.2400
Author Contributions: 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.
Study concept and design: Boss, Cheng, Beach.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: Boss, Links, Saxton.
Critical revision of the manuscript for important intellectual content: Boss, Links, Cheng, Beach.
Statistical analysis: Boss, Links.
Obtained funding: Boss, Cheng.
Administrative, technical, or material support: Boss.
Study supervision: Boss, Saxton, Cheng.
Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest, and none were reported.
Funding/Support: Dr Boss is supported by grant No. K08HS022932 from the Agency for Healthcare Research and Quality. Dr Boss is also supported by the Johns Hopkins Clinician-Scientist Award (January 2014–December 2015) and the American Society of Pediatric Otolaryngology Career Development Award.
Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality.
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