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Pediatr Dent. Author manuscript; available in PMC 2015 November 05. Published in final edited form as: Pediatr Dent. 2015 ; 37(5): 442–446.
Transitioning from pediatric to adult dental care for adolescents with special health care needs: adolescent and parent perspectives (Part I) Ms. Stephanie Cruz, BA1, Dr. John Neff, MD2, and Dr. Donald L. Chi, DDS, PhD3 1graduate
research assistant in the Department of Oral Health Sciences at the University of Washington
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2professor
in the Department of Pediatrics at the University of Washington
3associate
professor in the Department of Oral Health Sciences at the University of Washington
Abstract Purpose—The purpose of this investigation was to understand transitions from pediatric dental care to adult dental care for adolescents with special health care needs (ASHCN) from the parent and adolescent perspectives. Methods—We conducted focus groups and interviews with 59 parents and 13 adolescent-parent dyads to identify factors associated with transitions to adult-centered dental care for ASHCN.
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Results—Most parents believed ASHCN were at-risk for caries, but ASHCN were not concerned about tooth decay. Parents of adolescents with complex SHCN believed it would be acceptable to continue seeing a pediatric dentist. Parents of Medicaid-enrolled ASHCN reported lower efficacy in transitioning. ASHCN desired personalized, adolescent-centered care and were motivated to transition when they felt out of place at the pediatric dentist office. Parents believed pediatric dentists have an important role in initiating and facilitating transitions. Conclusions—Pediatric dentists are well-positioned to implement family- and adolescentcentered policies to ensure dental transitions for ASHCN and their families. Keywords Dental care transitions; adolescents with special health care needs; children with special health care needs; qualitative research
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INTRODUCTION The 2011 U.S. Institute of Medicine Report Improving Access to Oral Health Care for Vulnerable and Underserved Populations indicated adolescents have difficulties accessing dental care.1 Three times as many adolescents have unmet dental care needs as adolescents with unmet medical needs (5.3 percent and 1.6 percent, respectively).2 Dental care is the most common unmet need for adolescents with special health care needs (ASHCN).3 Special health care needs (SHCN) are defined as “chronic physical, developmental, behavioral, or emotional condition[s]” that “require health and related services of a type or amount beyond that required…generally”.4 The prevalence of SHCN during childhood
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increases with age. Two times as many adolescents ages 12–17 have SHCN as children under age 6 (15.8 percent and 7.8 percent, respectively).5 Adolescence is a unique period of the oral health life course. Dental utilization rates begin to drop in early adolescence, oral hygiene and dietary behaviors get worse, and other behaviors like tobacco and drug use are initiated.6–11 Dental visits are important in preventing dental caries and give dentists an opportunity to assess caries risk, provide anticipatory guidance, and deliver preventive and needed restorative care.12
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The American Academy of Pediatrics defines health transitions as “the purposeful, planned movement of adolescents and young adults” with SHCN “from child-centered to adultoriented health care systems”.13 Health services are commonly unavailable for ASHCN as they enter young adulthood.14 Studies have documented barriers to medical care transitions.15–17 Similar barriers exist in dentistry.18 Findings from a national survey of pediatric dentists indicated multiple barriers: shortage of general dentists to whom ASHCN can be referred, difficulty of breaking bonds with ASHCN and their families, and lack of reimbursement for transition planning.19 Dental transitions for ASHCN are important to ensure continued access to preventive and restorative care throughout adulthood, and to prevent individuals from having to rely on hospital emergency departments for management of dental problems. Furthermore, 70 percent of pediatric dentists continue treating young adults with SHCN.19 This is a public health problem with implications for how scarce pediatric dentistry workforce resources are devoted equitably to infants, children, and adolescents vis-à-vis young adults with SHCN.20
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Studies on dental transitions have focused on dentists, with less attention paid to parent and adolescent perspectives. In this two-part qualitative study, we adapted two health behavior models – the Health Belief Model (HBM) and the Extended Parallel Process Model (EPPM). Our purpose was to better understand dental care transitions for ASHCN.21–23 In Part I, we were focusing on parents and adolescent-parent dyads. Part II focused on dentist perspectives.24
METHODS Study Population
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Participants were recruited from Seattle Children’s Hospital, a tertiary care facility with 14,494 inpatient hospitalizations in 2013.25 We requested a list of adolescents who met the following criteria: 1) ages 13–17 years; 2) lived in King, Pierce, or Snohomish counties in Washington state; 3) equal to or greater than one inpatient visit in 2011; 4) had a SHCN; and 5) English was the primary or preferred language. The 3M Clinical Risk Grouping software, which takes health service utilization patterns to assess health care complexity and need, was used to identify SHCN (e.g., episodic, lifelong, malignant, complex SHCN).26 A total of 537 adolescents met these inclusion criteria. We contacted 462 parents by phone (75 of the parents had a non-working or disconnected telephone number). Recruitment phone calls were made at various times of the day and early evening to maximize the likelihood of reaching a parent. A total of 59 of the 462 parents of ASHCN contacted agreed to participate
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For the adolescent-parent dyad interviews, we contacted 56 of the 59 previously-interviewed parents (3 parents who were interviewed for the first part of the study did not wish to be contacted for the second part of the study involving adolescent-parent dyad interviews). Of the 56 parents, 13 agreed to participate in an adolescent-parent dyad interview. The study was approved by the Seattle Children’s Hospital Institutional Review Board. Study Procedures
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Dental care transitions were defined as the process involved in shifting from pediatric to adult care. We generated semi-structured interview scripts based on the HBM and EPPM,— and examined seven theoretical constructs: susceptibility (level of risk for cavities); severity (how bad it would be if no transition took place); self-efficacy (extent of empowerment to transition); benefits and drawbacks (outcomes associated with transitions); saliency (importance of transitions); barriers (factors that make transitions difficult); and cues to action (transition catalysts).21–23 One study team member trained in qualitative research methods conducted all focus groups and interviews. Our initial goal was to conduct focus groups with the 59 parents who agreed to participate in the first part of the study involving only parents. After conducting seven focus groups with 21 parents, it became difficult to recruit for focus groups. Therefore, we modified the study design and conducted one-on-one parent interviews with the remaining 38 parents. The one-hour parent focus groups or interviews were digitally recorded. Parents received a $15 gift card as an incentive.
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In the second part of the study, the focus of the adolescent-parent dyad interviews was the adolescent. Parents were present to provide support and prompts when necessary. Each of the 13 adolescent-parent dyad interviews lasted about one hour and were digitally recorded. Adolescents received a $10 gift card and parents received a $15 gift card. Data Analyses
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We had audio recordings of seven focus groups involving 21 parents, 38 one-on-one interviews with parents, and 13 interviews with adolescent-parent dyads. Thus, there were a total of 58 audio recordings (45 involving parents only and 13 adolescent-parent dyads). Audio recordings were transcribed by a transcription service and verified for accuracy. A codebook was generated based on the constructs described previously. Four coders coded three randomly-selected parent transcripts separately to establish a subjective coding strategy. Discrepancies were resolved by consensus. The remaining 42 parent transcripts were divided among three coders and the 13 adolescent-parent transcripts were coded by a single coder. All data were coded using NVivo 8 software.27
RESULTS Participant Characteristics Of the 59 parents who participated in a focus group or one-on-one interview, 81.4 percent were mothers and 18.6 percent were fathers. Adolescent age ranged from 13–17 years (mean:15.3±1.2 years). About 15.3 percent of adolescents had an episodic SHCN (e.g., well-
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controlled diabetes), 37.3 percent lifelong SHCN (e.g., severe diabetes, autism spectrum disorder), 8.5 percent malignant SHCN, and 37.3 percent complex SHCN (e.g., cerebral palsy, cystic fibrosis). For the 13 adolescents from the dyad interviews, the mean age was 16.4 years and one-half were female. Eight participants received dental care from pediatric dentists and five were seeing general dentists. The distribution and types of SHCN were similar to adolescents represented in the first part of the study involving focus groups or interviews with parents only. Susceptibility
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Most adolescents expressed little concern about tooth decay because they had never had a cavity. However, a male ASHCN said “before my surgeries …I don’t think I had any cavities whatsoever. So it’s kind of depressing when I have a cavity and [my siblings without SHCN] don’t.” Some parents echoed the connection between SHCN and susceptibility. One father explained his daughter “had a total gastrectomy and…she had tube feeding for a long time. It was very difficult to get her to eat enough calories, so we didn’t really care what she ate. We just wanted to get calories in.” For another parent, her son “had palate surgery when he was nine months old…it exposed his molars a lot sooner…the two molars pretty much just rotted.”
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Most parents believed their ASHCN was highly susceptible to tooth decay and spoke about specific risk factors emerging during adolescence. One parent said her daughter studies “overnight and she’s drinking pop to stay awake, but [doesn’t] brush [her] teeth.” Several parents attributed increased susceptibility to family members who helped care for children unable to brush their own teeth, but did not “feel real comfortable” brushing the adolescent’s teeth. Most parents blamed themselves, admitting “we try to help her as much as we can, but we can’t do it all of the time”. Severity Most adolescents did not believe it would be very bad if they were unable to transition to adult-centered dental care. Twelve of thirteen participants regularly visited a dentist. Some adolescents felt “if you take good care of yourself, it’s not that big of a deal [to not transition] but you still need to try to find [a dentist].”
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Parents were divided on their views regarding severity. A parent of an adolescent with a less complex SHCN said it was more appropriate for her child to be treated in an adult setting. Other parents, particularly those with adolescents with complex SCHN, did not view it as “a total disaster if they can’t transition” stating that the care her daughter received at the pediatric dentist office “is really quite comfortable… so we’ll stay with it for as long as possible.”
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Self-efficacy
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Most adolescents did not express high self-efficacy in transitioning to adult-centered dental care. Instead, they expected dental transitions would happen because their medical team, dental office, or parent would facilitate the transition. Parent self-efficacy depended on the type of dental insurance the child had. One father mentioned the role of “good” insurance that would continue to cover his adult daughter after he retired. However, even parents with employer-based insurance recognized limitations with private insurance in the current economy, including changes in coverage and deductibles. Some described not being able to leave their job because of the insurance. Parents of Medicaid-enrolled ASHCN expressed feelings of vulnerability and low selfefficacy.
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Benefits and drawbacks ASHCN mentioned a major benefit of transitioning to adult-centered care would be receiving care from a dentist who “understand[s] adult teeth better.” Another benefit, according to a male ASHCN, was “building character”, since he would be responsible for scheduling his own appointments. However, for adolescents on Medicaid, offices with multiple general dentists left them with little say over who their dentist would be.
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Parents reported multiple benefits associated with transitions that other parents described as potential drawbacks. One parent explained, “we want him to eventually be as healthy and as independent as [possible].” General dentist offices were viewed as calm whereas “some of the pediatric dentist places are just swarming with people and kids.” Despite these benefits, one parent believed “kids are being [transitioned] at a very arbitrary age where the kids may not be ready”. As one mother explained “He has been chronically ill his whole life. So, he is 15, but he has kind of been babied a bit…I think he has kind of an expectation of a little more personalized [care] and a little more compassion…I just feel like he would have a hard time if he went to a dentist that didn’t understand all of his needs.” Several parents described feelings of being excluded from decision making post-transition. One mother said the general dentist stopped her “from going into that room with them and that blew me away… Why can’t I…be with my daughter?” Saliency
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A majority of adolescents felt dental care was important, strictly in terms of receiving cleanings, but dental transitions were not. For the few ASHCN who considered transitioning a salient issue it was because discontinuing dental care meant susceptibility to future complications. For one adolescent, discontinued care meant her “teeth would start hurting and gums and everything will just ache.” Most parents believe transitions were salient and understood the value of comprehensive dental care, but some parents believed transitions were unimportant. One parent recognized the importance of oral health but stated “with all we’ve got going on, [transitions] would
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probably be the least of my worries.” One parent whose son with autism spectrum disorder had not yet transitioned did not mind if his son continued seeing a pediatric dentist throughout adulthood. Another parent pointed out that even after transitioning to a general dentist, the option to return to the pediatric dentist if needed would always be available. Many parents explained dental transitions were not salient because Washington Medicaid “doesn’t do dental…care for adults”. Barriers
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Some adolescents mentioned loss of a “fun” and “kid-friendly” atmosphere as well as intimidation of being the only non-adult in the new dental office as barriers. One female adolescent appreciated the “perks” of a pediatric office, like “Disney movies. It beats the elevator music… It keeps your mind off drills going into your mouth.” Another adolescent remarked, “I don’t think I’ll ever want to make the transition…our dentist acts like a kid with me so that’s why it’s fun to go to the dentist.” For one adolescent who was still seeing her pediatric dentist, “changing would be like [going] from familiar surroundings, familiar routine, to totally unknown.” Relatedly, a long-standing relationship with the pediatric dentist who knows the patient and understands their SCHN was a transition barrier. As one male adolescent described, “there is definitely comfort there. I like [my pediatric dentist]. She knows me and I know her.” Parents noted that having an adolescent insured by Medicaid was a barrier, which was also a factor that influenced self-efficacy as noted previously. In addition, lack of readiness on the part of the adolescent and an inability to find knowledgeable general dentists were barriers to transitions.
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Cues to action Adolescents mentioned feeling out of place as a reason for transitioning. One parent said her ASHCN “reacted negatively to the really cutesy and very enthusiastic” staff at the pediatric dentist and asked about seeing a general dentist. Some parents noticed their children were “embarrassed to be in the office with the little kids [because the staff] have the high pitched voice…when they talk to you.” A number of parents worried their adolescent was “getting too big for the office”.
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Transitions were also triggered by family relocation, high school graduation, the adolescent finding a job or moving away from home, and medical care transitions. A number of parents complained about dental offices arbitrarily “graduating” patients and felt they were being “fired” from the office. Some offices provided families with referrals whereas others offered little support. One parent likened the process of being asked to leave a pediatric dentist to “divorce…it is devastating.”
DISCUSSION The Health Belief Model and the Extended Parallel Process Model provided a relevant framework to understand dental transitions for ASHCN. Most adolescents were not concerned with tooth decay, but parents reported high caries susceptibility for their adolescent. Socioeconomically-vulnerable parents reported low self-efficacy to transition. Pediatr Dent. Author manuscript; available in PMC 2015 November 05.
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Adolescents were motivated to transition when they felt out of place in their pediatriccentered dental home. Parents believed pediatric dentists have an important role in initiating and facilitating transitions.
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Adolescents did not think dental disease was very serious or that they were at risk. These views are consistent with previous studies on adolescent health-seeking behaviors, with apathy and invincibility as common attitudes among adolescents.28–31 Unlike parents, most adolescents were not concerned with tooth decay, and only a few perceived consequences with not transitioning to a general dentist. These data collectively indicate severity and susceptibility are closely aligned for ASHCN. Interestingly, adolescents viewed salience of transitions in terms of equating dental visits with cleanings but not as opportunities to receive advice on oral health behaviors, whereas parents in general understood the importance of comprehensive dental care. No other studies have reported perceptions of risk for tooth decay for ASHCN. Ultimately, this finding points to a need for dentists to communicate the value of dental care, which is an important aspect of patient-centered dental care for ASHCN. Dental staff may need to take extra time to speak with ASHCN about the importance of disease prevention, rather than directing conversations toward parents. Future research should continue to elucidate ways to improve communication with ASHCN.
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While adolescents did not exhibit high self-efficacy to transition, their views were consistent with parents who generally believed there were benefits associated with transitions and were empowered to help their adolescent transition. The main benefit was reinforcement that their adolescent was becoming independent and receiving adult-centered dental care. Parents noted three barriers to transitions. The first was having Medicaid insurance, which made it difficult for parents to find general dentists willing to accept ASHCN. In January 2011, the Washington Medicaid program eliminated dental benefits for most adults. Adult dental benefits were restored in January 2014, but there is likely to be confusion among Medicaid enrollees and parents about adult dental coverage. Community-based efforts may be needed to spread awareness about restored benefits. Future research should examine the short- and long-term consequences associated with Medicaid cuts with the goal of developing policies prohibiting dental cuts. A second factor was lack of readiness. Many parents described their adolescent being abruptly transitioned, which is problematic because “graduated” ASHCN with a parent who lacks efficacy may end up losing contact with the dental care system, resulting in symptomdrive care.
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A third factor was difficulty finding knowledgeable general dentists willing to treat patients with SHCN. These difficulties were recognized by both pediatric and general dentists.24 Some pediatric dental offices were not providing specific referrals. Because transitions are a process rather than a discreet event13, referrals alone may be inadequate to ensure transitions. Parents believed pediatric dentists have an important role in initiating and facilitating transitions. There is a need for pediatric dentists to discuss the issue of transitions early on to avoid abrupt transitions. Researchers should develop readiness assessment tools that could be used by pediatric dentists to generate patient-tailored transition plans that can
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be implemented at the appropriate time. There is also a need for pediatric dentists to follow up with families to ensure completion of the transition process.
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To improve transitions, pediatric dentists could collaborate with medical providers to ensure dental transition planning is part of broader health care transitions for ASHCN.32 General dentists need to be prepared to care for individuals with SHCN33, which points to the importance of meaningful clinical experiences during dental school. State Medicaid programs could consider reimbursing pediatric dentists for implementing evidence-based transition planning services for ASHCN. Reimbursement should be performance-based and include parent and adolescent satisfaction as part of an outcomes assessment. In addition, reform is needed at the federal level to make adult dental care a mandatory benefit under Medicaid that cannot be eliminated. Future transition-related research efforts should target lower-income families with adolescents with complex SHCN. Additionally, interventions might focus on boosting parent efficacy.
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There were four study limitations. First, participants were recruited from one tertiary care children’s hospital and our findings are generalizable only to ASHCN from this setting. Second, participants were part of a convenience sample, adolescents with more severe SHCN were disproportionately represented, and all ASHCN received dental care, which introduces the potential for selection bias. Future studies should recruit participants from community health centers and pediatric dentist offices to increase generalizability and to include more socioeconomically vulnerable ASHCN of varying degrees of severity. Third, our original goal was to conduct focus groups with parents, which allows for potentially richer data as a result of synergy generated during conversations, but we had to conduct interviews after seven focus groups because of scheduling difficulties. While this protocol change may have restricted the richness of the data collected, it is unlikely because parents in both approaches provided similar responses. Fourth, the dyad interviewing approach was biased toward higher functioning ASHCN. Alternative methods are needed to assess the perspective of ASHCN with cognitive impairments or other disabilities.
CONCLUSIONS Based on our study, we conclude: 1.
Most ASHCN were not concerned with tooth decay, but parents believed their ASHCN was at increased risk for dental caries.
2.
ASHCN were motivated to transition when they felt out of place or babied in their pediatric-centered dental home.
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3, Parents of Medicaid-enrolled ASHCN reported lower self-efficacy in their ability to transition their adolescent. 3.
Parents believed pediatric dentists have an important role in initiating and facilitating transitions.
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Acknowledgments This study was funded by an American Academy of Pediatrics Community Access To Child Health (CATCH) grant and NIDCR Grant No. K08DE020856.
References
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1. Institute of Medicine (IOM) and National Research Council (NRC). Improving access to oral health care for vulnerable and underserved populations. Washington, DC: The National Academies Press; 2011. 2. Newacheck PW, Hung YY, Park MJ, Brindis CD, Irwin CE Jr. Disparities in adolescent health and health care: does socioeconomic status matter? Health Serv Res. 2003 Oct; 38(5):1235–52. [PubMed: 14596388] 3. Newacheck PW, Hughes DC, Hung YY, Wong S, Stoddard JJ. The unmet health needs of America’s children. Pediatrics. 2000 Apr; 105(4 Pt 2):989–97. [PubMed: 10742361] 4. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics. 1998; 102(1):137–140. [PubMed: 9714637] 5. National Center for Health Statistics. Chartbook on trends in the health of Americans. Hyattsville, MD: 2002. 6. Chi DL, Momany ET, Neff J, et al. Impact of chronic condition status and severity on dental utilization for Iowa Medicaid-enrolled children. Med Care. 2011 Feb; 49(2):180–92. [PubMed: 21150799] 7. Al-Ansari JM, Al-Jairan LY, Gillespie GM. Dietary habits of the primary to secondary school population and implications for oral health. J Allied Health. 2006 Summer;35(2):75–80. [PubMed: 16848370] 8. Astrøm AN, Samdal O. Time trends in oral health behaviors among Norwegian adolescents: 1985– 97. Acta Odontol Scand. 2001 Aug; 59(4):193–200. [PubMed: 11570521] 9. Chen X, Jacques-Tiura AJ. Smoking initiation associated with specific periods in the life course from birth to young adulthood: data from the National Longitudinal Survey of Youth 1997. Am J Public Health. 2014 Feb; 104(2):e119–26. [PubMed: 24328611] 10. Centers for Disease Control and Prevention (CDC). Tobacco use among middle and high school students—United States, 2000–2009. MMWR Morb Mortal Wkly Rep. 2010; 59:1063–8. [PubMed: 20798668] 11. Jackson KM, Schulenberg JE. Alcohol use during the transition from middle school to high school: national panel data on prevalence and moderators. Dev Psychol. 2013 Nov; 49(11):2147–58. [PubMed: 23421801] 12. American Academy of Pediatric Dentistry. Guideline on periodicity of examination, preventive dental services, anticipatory guidance/counseling, and oral treatment for infants, children, and adolescents. Pediatr Dent. 2014; 36(special issue):118–126. 13. Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993; 14(7):570–576. [PubMed: 8312295] 14. Rosenbaum P, Stewart D. Perspectives on transitions: Rethinking services for children and youth with developmental disabilities. Arch of Phys Med Rehabil. 2007; 88(8):1080–1082. [PubMed: 17678674] 15. Scal P, Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics. 2005; 115(6):1607–1612. [PubMed: 15930223] 16. Lotstein DS, Inkelas M, Hays RD, et al. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health. 2008; 43(1):23–29. [PubMed: 18565434] 17. Sawicki GS, Whitworth R, Gunn L, et al. Receipt of health care transition counseling in the national survey of adult transition and health. Pediatrics. 2011; 128(3):e521–e529. [PubMed: 21824879]
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18. American Academy of Pediatric Dentistry. Policy on Transitioning from a Pediatric-centered to an Adult-centered Dental Home for Individuals with Special Health Care Needs. Pediatr Dent. 2014; 36(special issue):104–106. [PubMed: 24960379] 19. Nowak AJ, Casamassimo PS, Slayton RL. Facilitating the transition of patients with special health care needs from pediatric to adult oral health care. J Am Dent Assoc. 2010; 141(11):1351–6. [PubMed: 21037193] 20. Nowak AJ. Patients with special health care needs in pediatric dental practices. Pediatr Dent. 2002 May-Jun;24(3):227–8. [PubMed: 12064496] 21. Champion, VL.; Skinner, CS. The Health Belief Model. In: Glanz, K.; Rimer, BK.; Viswanth, K., editors. Health Behavior and Health Education: Theory, Research, and Practice. 4. San Francisco, CA: Jossey-Bass; 2008. p. 45-65. 22. Witte K, Allen M. A meta-analysis of fear appeals: implications for effective public health campaigns. Health Educ Behav. 2000 Oct; 27(5):591–615. [PubMed: 11009129] 23. Askelson NM, Chi DL, Momany E, et al. Encouraging early preventive dental visits for preschoolaged children enrolled in Medicaid: using the extended parallel process model to conduct formative research. J Public Health Dent. 2014 Winter;74(1):64–70. [PubMed: 22994600] 24. Authors Anonymous for Confidentiality. Transitioning from pediatric care to adult care for adolescents with special health care needs: dentist perspectives (part 2). Under review. 25. Seattle Children’s Hospital. [Accessed on December 12, 2014] Facts and Stats. Fiscal Year. 2013. Available at: http://www.seattlechildrens.org/about/history/facts-and-stats/ 26. Chi DL, Momany ET, Neff J, et al. Impact of chronic condition status and severity on dental utilization for Iowa Medicaid-enrolled children. Med Care. 2011 Feb; 49(2):180–92. [PubMed: 21150799] 27. NVivo qualitative data analysis software. QSR International Pty Ltd; 2008. Version 8 28. Tonkin R. Adolescent Risk Taking Behavior. J Adolesc Health Care. 1987; 8:213–220. [PubMed: 3546232] 29. Radius SM, Dillman TE, Becker MH, Rosenstock IM, Horvath WJ. Adolescent perspectives on health and illness. Adolescence. 1980; 15:377–83. 30. Greening L, Stoppelbein L, Chandler CC, Elkin TD. Predictors of children’s and adolescents’ risk perception. J Ped Psychol. 2005; 30(5):425–35. 31. Östberg AL, Jarkman K, Lindblad U, Halling A. Adolescents’ perceptions of oral health and influencing factors: a qualitative study. Acta Odontologica. 2002; 60(3):167–73. 32. Chi DL. Medical care transition planning and dental care use for youth with special health care needs during the transition from adolescence to young adulthood: a preliminary explanatory model. Matern Child Health J. 2014 May; 18(4):778–88. [PubMed: 23812799] 33. Casamassimo PS, Seale NS, Ruehs K. General dentists’ perceptions of educational and treatment issues affecting access to care for children with special health care needs. J Dent Educ. 2004 Jan; 68(1):23–8. [PubMed: 14761169]
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Pediatr Dent. Author manuscript; available in PMC 2015 November 05. Published in final edited form as: Pediatr Dent. 2015 ; 37(5): 442–446.
Transitioning from pediatric to adult dental care for adolescents with special health care needs: adolescent and parent perspectives (Part I) Ms. Stephanie Cruz, BA1, Dr. John Neff, MD2, and Dr. Donald L. Chi, DDS, PhD3 1graduate
research assistant in the Department of Oral Health Sciences at the University of Washington
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2professor
in the Department of Pediatrics at the University of Washington
3associate
professor in the Department of Oral Health Sciences at the University of Washington
Abstract Purpose—The purpose of this investigation was to understand transitions from pediatric dental care to adult dental care for adolescents with special health care needs (ASHCN) from the parent and adolescent perspectives. Methods—We conducted focus groups and interviews with 59 parents and 13 adolescent-parent dyads to identify factors associated with transitions to adult-centered dental care for ASHCN.
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Results—Most parents believed ASHCN were at-risk for caries, but ASHCN were not concerned about tooth decay. Parents of adolescents with complex SHCN believed it would be acceptable to continue seeing a pediatric dentist. Parents of Medicaid-enrolled ASHCN reported lower efficacy in transitioning. ASHCN desired personalized, adolescent-centered care and were motivated to transition when they felt out of place at the pediatric dentist office. Parents believed pediatric dentists have an important role in initiating and facilitating transitions. Conclusions—Pediatric dentists are well-positioned to implement family- and adolescentcentered policies to ensure dental transitions for ASHCN and their families. Keywords Dental care transitions; adolescents with special health care needs; children with special health care needs; qualitative research
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INTRODUCTION The 2011 U.S. Institute of Medicine Report Improving Access to Oral Health Care for Vulnerable and Underserved Populations indicated adolescents have difficulties accessing dental care.1 Three times as many adolescents have unmet dental care needs as adolescents with unmet medical needs (5.3 percent and 1.6 percent, respectively).2 Dental care is the most common unmet need for adolescents with special health care needs (ASHCN).3 Special health care needs (SHCN) are defined as “chronic physical, developmental, behavioral, or emotional condition[s]” that “require health and related services of a type or amount beyond that required…generally”.4 The prevalence of SHCN during childhood
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increases with age. Two times as many adolescents ages 12–17 have SHCN as children under age 6 (15.8 percent and 7.8 percent, respectively).5 Adolescence is a unique period of the oral health life course. Dental utilization rates begin to drop in early adolescence, oral hygiene and dietary behaviors get worse, and other behaviors like tobacco and drug use are initiated.6–11 Dental visits are important in preventing dental caries and give dentists an opportunity to assess caries risk, provide anticipatory guidance, and deliver preventive and needed restorative care.12
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The American Academy of Pediatrics defines health transitions as “the purposeful, planned movement of adolescents and young adults” with SHCN “from child-centered to adultoriented health care systems”.13 Health services are commonly unavailable for ASHCN as they enter young adulthood.14 Studies have documented barriers to medical care transitions.15–17 Similar barriers exist in dentistry.18 Findings from a national survey of pediatric dentists indicated multiple barriers: shortage of general dentists to whom ASHCN can be referred, difficulty of breaking bonds with ASHCN and their families, and lack of reimbursement for transition planning.19 Dental transitions for ASHCN are important to ensure continued access to preventive and restorative care throughout adulthood, and to prevent individuals from having to rely on hospital emergency departments for management of dental problems. Furthermore, 70 percent of pediatric dentists continue treating young adults with SHCN.19 This is a public health problem with implications for how scarce pediatric dentistry workforce resources are devoted equitably to infants, children, and adolescents vis-à-vis young adults with SHCN.20
Author Manuscript
Studies on dental transitions have focused on dentists, with less attention paid to parent and adolescent perspectives. In this two-part qualitative study, we adapted two health behavior models – the Health Belief Model (HBM) and the Extended Parallel Process Model (EPPM). Our purpose was to better understand dental care transitions for ASHCN.21–23 In Part I, we were focusing on parents and adolescent-parent dyads. Part II focused on dentist perspectives.24
METHODS Study Population
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Participants were recruited from Seattle Children’s Hospital, a tertiary care facility with 14,494 inpatient hospitalizations in 2013.25 We requested a list of adolescents who met the following criteria: 1) ages 13–17 years; 2) lived in King, Pierce, or Snohomish counties in Washington state; 3) equal to or greater than one inpatient visit in 2011; 4) had a SHCN; and 5) English was the primary or preferred language. The 3M Clinical Risk Grouping software, which takes health service utilization patterns to assess health care complexity and need, was used to identify SHCN (e.g., episodic, lifelong, malignant, complex SHCN).26 A total of 537 adolescents met these inclusion criteria. We contacted 462 parents by phone (75 of the parents had a non-working or disconnected telephone number). Recruitment phone calls were made at various times of the day and early evening to maximize the likelihood of reaching a parent. A total of 59 of the 462 parents of ASHCN contacted agreed to participate
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For the adolescent-parent dyad interviews, we contacted 56 of the 59 previously-interviewed parents (3 parents who were interviewed for the first part of the study did not wish to be contacted for the second part of the study involving adolescent-parent dyad interviews). Of the 56 parents, 13 agreed to participate in an adolescent-parent dyad interview. The study was approved by the Seattle Children’s Hospital Institutional Review Board. Study Procedures
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Dental care transitions were defined as the process involved in shifting from pediatric to adult care. We generated semi-structured interview scripts based on the HBM and EPPM,— and examined seven theoretical constructs: susceptibility (level of risk for cavities); severity (how bad it would be if no transition took place); self-efficacy (extent of empowerment to transition); benefits and drawbacks (outcomes associated with transitions); saliency (importance of transitions); barriers (factors that make transitions difficult); and cues to action (transition catalysts).21–23 One study team member trained in qualitative research methods conducted all focus groups and interviews. Our initial goal was to conduct focus groups with the 59 parents who agreed to participate in the first part of the study involving only parents. After conducting seven focus groups with 21 parents, it became difficult to recruit for focus groups. Therefore, we modified the study design and conducted one-on-one parent interviews with the remaining 38 parents. The one-hour parent focus groups or interviews were digitally recorded. Parents received a $15 gift card as an incentive.
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In the second part of the study, the focus of the adolescent-parent dyad interviews was the adolescent. Parents were present to provide support and prompts when necessary. Each of the 13 adolescent-parent dyad interviews lasted about one hour and were digitally recorded. Adolescents received a $10 gift card and parents received a $15 gift card. Data Analyses
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We had audio recordings of seven focus groups involving 21 parents, 38 one-on-one interviews with parents, and 13 interviews with adolescent-parent dyads. Thus, there were a total of 58 audio recordings (45 involving parents only and 13 adolescent-parent dyads). Audio recordings were transcribed by a transcription service and verified for accuracy. A codebook was generated based on the constructs described previously. Four coders coded three randomly-selected parent transcripts separately to establish a subjective coding strategy. Discrepancies were resolved by consensus. The remaining 42 parent transcripts were divided among three coders and the 13 adolescent-parent transcripts were coded by a single coder. All data were coded using NVivo 8 software.27
RESULTS Participant Characteristics Of the 59 parents who participated in a focus group or one-on-one interview, 81.4 percent were mothers and 18.6 percent were fathers. Adolescent age ranged from 13–17 years (mean:15.3±1.2 years). About 15.3 percent of adolescents had an episodic SHCN (e.g., well-
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controlled diabetes), 37.3 percent lifelong SHCN (e.g., severe diabetes, autism spectrum disorder), 8.5 percent malignant SHCN, and 37.3 percent complex SHCN (e.g., cerebral palsy, cystic fibrosis). For the 13 adolescents from the dyad interviews, the mean age was 16.4 years and one-half were female. Eight participants received dental care from pediatric dentists and five were seeing general dentists. The distribution and types of SHCN were similar to adolescents represented in the first part of the study involving focus groups or interviews with parents only. Susceptibility
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Most adolescents expressed little concern about tooth decay because they had never had a cavity. However, a male ASHCN said “before my surgeries …I don’t think I had any cavities whatsoever. So it’s kind of depressing when I have a cavity and [my siblings without SHCN] don’t.” Some parents echoed the connection between SHCN and susceptibility. One father explained his daughter “had a total gastrectomy and…she had tube feeding for a long time. It was very difficult to get her to eat enough calories, so we didn’t really care what she ate. We just wanted to get calories in.” For another parent, her son “had palate surgery when he was nine months old…it exposed his molars a lot sooner…the two molars pretty much just rotted.”
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Most parents believed their ASHCN was highly susceptible to tooth decay and spoke about specific risk factors emerging during adolescence. One parent said her daughter studies “overnight and she’s drinking pop to stay awake, but [doesn’t] brush [her] teeth.” Several parents attributed increased susceptibility to family members who helped care for children unable to brush their own teeth, but did not “feel real comfortable” brushing the adolescent’s teeth. Most parents blamed themselves, admitting “we try to help her as much as we can, but we can’t do it all of the time”. Severity Most adolescents did not believe it would be very bad if they were unable to transition to adult-centered dental care. Twelve of thirteen participants regularly visited a dentist. Some adolescents felt “if you take good care of yourself, it’s not that big of a deal [to not transition] but you still need to try to find [a dentist].”
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Parents were divided on their views regarding severity. A parent of an adolescent with a less complex SHCN said it was more appropriate for her child to be treated in an adult setting. Other parents, particularly those with adolescents with complex SCHN, did not view it as “a total disaster if they can’t transition” stating that the care her daughter received at the pediatric dentist office “is really quite comfortable… so we’ll stay with it for as long as possible.”
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Self-efficacy
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Most adolescents did not express high self-efficacy in transitioning to adult-centered dental care. Instead, they expected dental transitions would happen because their medical team, dental office, or parent would facilitate the transition. Parent self-efficacy depended on the type of dental insurance the child had. One father mentioned the role of “good” insurance that would continue to cover his adult daughter after he retired. However, even parents with employer-based insurance recognized limitations with private insurance in the current economy, including changes in coverage and deductibles. Some described not being able to leave their job because of the insurance. Parents of Medicaid-enrolled ASHCN expressed feelings of vulnerability and low selfefficacy.
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Benefits and drawbacks ASHCN mentioned a major benefit of transitioning to adult-centered care would be receiving care from a dentist who “understand[s] adult teeth better.” Another benefit, according to a male ASHCN, was “building character”, since he would be responsible for scheduling his own appointments. However, for adolescents on Medicaid, offices with multiple general dentists left them with little say over who their dentist would be.
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Parents reported multiple benefits associated with transitions that other parents described as potential drawbacks. One parent explained, “we want him to eventually be as healthy and as independent as [possible].” General dentist offices were viewed as calm whereas “some of the pediatric dentist places are just swarming with people and kids.” Despite these benefits, one parent believed “kids are being [transitioned] at a very arbitrary age where the kids may not be ready”. As one mother explained “He has been chronically ill his whole life. So, he is 15, but he has kind of been babied a bit…I think he has kind of an expectation of a little more personalized [care] and a little more compassion…I just feel like he would have a hard time if he went to a dentist that didn’t understand all of his needs.” Several parents described feelings of being excluded from decision making post-transition. One mother said the general dentist stopped her “from going into that room with them and that blew me away… Why can’t I…be with my daughter?” Saliency
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A majority of adolescents felt dental care was important, strictly in terms of receiving cleanings, but dental transitions were not. For the few ASHCN who considered transitioning a salient issue it was because discontinuing dental care meant susceptibility to future complications. For one adolescent, discontinued care meant her “teeth would start hurting and gums and everything will just ache.” Most parents believe transitions were salient and understood the value of comprehensive dental care, but some parents believed transitions were unimportant. One parent recognized the importance of oral health but stated “with all we’ve got going on, [transitions] would
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probably be the least of my worries.” One parent whose son with autism spectrum disorder had not yet transitioned did not mind if his son continued seeing a pediatric dentist throughout adulthood. Another parent pointed out that even after transitioning to a general dentist, the option to return to the pediatric dentist if needed would always be available. Many parents explained dental transitions were not salient because Washington Medicaid “doesn’t do dental…care for adults”. Barriers
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Some adolescents mentioned loss of a “fun” and “kid-friendly” atmosphere as well as intimidation of being the only non-adult in the new dental office as barriers. One female adolescent appreciated the “perks” of a pediatric office, like “Disney movies. It beats the elevator music… It keeps your mind off drills going into your mouth.” Another adolescent remarked, “I don’t think I’ll ever want to make the transition…our dentist acts like a kid with me so that’s why it’s fun to go to the dentist.” For one adolescent who was still seeing her pediatric dentist, “changing would be like [going] from familiar surroundings, familiar routine, to totally unknown.” Relatedly, a long-standing relationship with the pediatric dentist who knows the patient and understands their SCHN was a transition barrier. As one male adolescent described, “there is definitely comfort there. I like [my pediatric dentist]. She knows me and I know her.” Parents noted that having an adolescent insured by Medicaid was a barrier, which was also a factor that influenced self-efficacy as noted previously. In addition, lack of readiness on the part of the adolescent and an inability to find knowledgeable general dentists were barriers to transitions.
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Cues to action Adolescents mentioned feeling out of place as a reason for transitioning. One parent said her ASHCN “reacted negatively to the really cutesy and very enthusiastic” staff at the pediatric dentist and asked about seeing a general dentist. Some parents noticed their children were “embarrassed to be in the office with the little kids [because the staff] have the high pitched voice…when they talk to you.” A number of parents worried their adolescent was “getting too big for the office”.
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Transitions were also triggered by family relocation, high school graduation, the adolescent finding a job or moving away from home, and medical care transitions. A number of parents complained about dental offices arbitrarily “graduating” patients and felt they were being “fired” from the office. Some offices provided families with referrals whereas others offered little support. One parent likened the process of being asked to leave a pediatric dentist to “divorce…it is devastating.”
DISCUSSION The Health Belief Model and the Extended Parallel Process Model provided a relevant framework to understand dental transitions for ASHCN. Most adolescents were not concerned with tooth decay, but parents reported high caries susceptibility for their adolescent. Socioeconomically-vulnerable parents reported low self-efficacy to transition. Pediatr Dent. Author manuscript; available in PMC 2015 November 05.
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Adolescents were motivated to transition when they felt out of place in their pediatriccentered dental home. Parents believed pediatric dentists have an important role in initiating and facilitating transitions.
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Adolescents did not think dental disease was very serious or that they were at risk. These views are consistent with previous studies on adolescent health-seeking behaviors, with apathy and invincibility as common attitudes among adolescents.28–31 Unlike parents, most adolescents were not concerned with tooth decay, and only a few perceived consequences with not transitioning to a general dentist. These data collectively indicate severity and susceptibility are closely aligned for ASHCN. Interestingly, adolescents viewed salience of transitions in terms of equating dental visits with cleanings but not as opportunities to receive advice on oral health behaviors, whereas parents in general understood the importance of comprehensive dental care. No other studies have reported perceptions of risk for tooth decay for ASHCN. Ultimately, this finding points to a need for dentists to communicate the value of dental care, which is an important aspect of patient-centered dental care for ASHCN. Dental staff may need to take extra time to speak with ASHCN about the importance of disease prevention, rather than directing conversations toward parents. Future research should continue to elucidate ways to improve communication with ASHCN.
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While adolescents did not exhibit high self-efficacy to transition, their views were consistent with parents who generally believed there were benefits associated with transitions and were empowered to help their adolescent transition. The main benefit was reinforcement that their adolescent was becoming independent and receiving adult-centered dental care. Parents noted three barriers to transitions. The first was having Medicaid insurance, which made it difficult for parents to find general dentists willing to accept ASHCN. In January 2011, the Washington Medicaid program eliminated dental benefits for most adults. Adult dental benefits were restored in January 2014, but there is likely to be confusion among Medicaid enrollees and parents about adult dental coverage. Community-based efforts may be needed to spread awareness about restored benefits. Future research should examine the short- and long-term consequences associated with Medicaid cuts with the goal of developing policies prohibiting dental cuts. A second factor was lack of readiness. Many parents described their adolescent being abruptly transitioned, which is problematic because “graduated” ASHCN with a parent who lacks efficacy may end up losing contact with the dental care system, resulting in symptomdrive care.
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A third factor was difficulty finding knowledgeable general dentists willing to treat patients with SHCN. These difficulties were recognized by both pediatric and general dentists.24 Some pediatric dental offices were not providing specific referrals. Because transitions are a process rather than a discreet event13, referrals alone may be inadequate to ensure transitions. Parents believed pediatric dentists have an important role in initiating and facilitating transitions. There is a need for pediatric dentists to discuss the issue of transitions early on to avoid abrupt transitions. Researchers should develop readiness assessment tools that could be used by pediatric dentists to generate patient-tailored transition plans that can
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be implemented at the appropriate time. There is also a need for pediatric dentists to follow up with families to ensure completion of the transition process.
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To improve transitions, pediatric dentists could collaborate with medical providers to ensure dental transition planning is part of broader health care transitions for ASHCN.32 General dentists need to be prepared to care for individuals with SHCN33, which points to the importance of meaningful clinical experiences during dental school. State Medicaid programs could consider reimbursing pediatric dentists for implementing evidence-based transition planning services for ASHCN. Reimbursement should be performance-based and include parent and adolescent satisfaction as part of an outcomes assessment. In addition, reform is needed at the federal level to make adult dental care a mandatory benefit under Medicaid that cannot be eliminated. Future transition-related research efforts should target lower-income families with adolescents with complex SHCN. Additionally, interventions might focus on boosting parent efficacy.
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There were four study limitations. First, participants were recruited from one tertiary care children’s hospital and our findings are generalizable only to ASHCN from this setting. Second, participants were part of a convenience sample, adolescents with more severe SHCN were disproportionately represented, and all ASHCN received dental care, which introduces the potential for selection bias. Future studies should recruit participants from community health centers and pediatric dentist offices to increase generalizability and to include more socioeconomically vulnerable ASHCN of varying degrees of severity. Third, our original goal was to conduct focus groups with parents, which allows for potentially richer data as a result of synergy generated during conversations, but we had to conduct interviews after seven focus groups because of scheduling difficulties. While this protocol change may have restricted the richness of the data collected, it is unlikely because parents in both approaches provided similar responses. Fourth, the dyad interviewing approach was biased toward higher functioning ASHCN. Alternative methods are needed to assess the perspective of ASHCN with cognitive impairments or other disabilities.
CONCLUSIONS Based on our study, we conclude: 1.
Most ASHCN were not concerned with tooth decay, but parents believed their ASHCN was at increased risk for dental caries.
2.
ASHCN were motivated to transition when they felt out of place or babied in their pediatric-centered dental home.
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3, Parents of Medicaid-enrolled ASHCN reported lower self-efficacy in their ability to transition their adolescent. 3.
Parents believed pediatric dentists have an important role in initiating and facilitating transitions.
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Acknowledgments This study was funded by an American Academy of Pediatrics Community Access To Child Health (CATCH) grant and NIDCR Grant No. K08DE020856.
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