Our analysis yielded five distinct, yet overlapping, roles for PHC providers for supporting AYA with chronic conditions during the transition from pediatric to adult care (Figure 1). These roles are described below with supporting quotes from the data. Perceived challenges and opportunities to improve care, organized by role, are summarized in Table 3.
Role 1: Being a “common thread” across the lifespan (continuous accessible care)
Participants described themselves as a “consistent” provider for AYAs during childhood, adolescence, and adulthood, and “across the lifespan” in primary care: “we have that ongoing relationship with [patients]” (FP3). Participants recognized this role as distinct from other providers: “with specialists, once you’re better you get discharged. Somebody still has to manage [AYA] long-term” (FP16). By caring for AYAs long-term, some participants reflected the absence of a “real transition” in primary care: “From a family doctor’s point of view, there is no arbitrary point where my [patients] don’t become my patients” (FP11).
Participants believed continuous primary care was beneficial for AYAs and for “bridging the gap” at transition: “there’s almost no real gap in care. If, in-between [pediatric-adult care], there were any delays, [AYAs] have me who knows their treatment history… The key was being involved from the beginning” (FP11). Further, participants believed AYAs transferring specialists may have “one less [new] provider”, and a provider who “knows” them, who can help them work through the “losses” [of child-oriented providers]: “[we] know them, will take good care of them… [we’re] not just some stranger who doesn’t understand what their life is about” (FP16). Continuous primary care was also perceived as especially important for AYAs with mental health issues, who may be less likely than other AYAs to access adult specialists: “Many kids in the adolescent mental health system do not end up in the adult system, seeing an adult psychiatrist. They stay with the family doctor because adult access to mental health services is very poor” (FP19).
Being involved “from the beginning” was perceived as a major facilitator to providing continuous primary care for AYAs. If participants were not involved prior to transfer (age 18), many expressed feeling “dumped on” by specialists; as articulated by this family physician:
But now [at 18], the family doctor is the primary care provider all of a sudden? For some [AYAs], I haven’t seen those kids since they were babies! It just seems like, when the kid’s 18, it’s like, “Ok, pediatrician’s done. Better go back to your family doctor.” If these kids don’t have a relationship with us, that’s a bit awkward… that’s 18 years of not seeing the kid! [laughs]” (FP7)
Participants identified potential consequences of pediatricians being “primary care provider” for AYAs in childhood and adolescence; for example, AYAs may assume “the pediatrician [or sub-specialist] is there for everything”, and thus not recognize the need to maintain relationships in primary care.
Timely access to primary care (e.g., offering evening appointments, “working around school schedules”), appeared to facilitate continuous care. Participants viewed themselves as “more accessible for follow-up” compared to AYAs’ specialist providers: “If [AYA] needs something [refills, prescriptions, forms], and they can’t get into their specialist, or [it’s] something not related to their specialist, then they have to come to see us” (FP7). A social worker participant described being “the go-to person for families”, and “an easy call, easier than [AYA] calling the pediatrician” (SW18). At the same time, many participants expressed frustration with “notoriously high no-show rates” with AYAs and difficulties “getting them in the door” (MH2). Thus, although participants perceived themselves to be a consistent provider, they also acknowledged barriers to AYA engagement in primary care (e.g., clinics not “adolescent friendly”; see Table 3).
Role 2: “We know the families” (family-partnered care)
Most participants described caring for AYAs’ parents and families, and viewed this as a unique role and “advantage” of being a PHC provider. For example, participants explained their involvement with parents as beneficial to avoiding gaps in care, or staying ‘up-to-date’, with AYAs’ care: “when parents come in and say, ‘Did you know my son has an echo and has seen a cardiologist, and we’re planning for next cardiac surgery?’ I’ll take some time at end of day and update [EMR]” (FP7). Another participant explained asking AYAs: “since we can’t get together in a month, can I call your mom and ask her how you’re doing in regards to your mood?” (FP11). Caring for families was perceived as particularly beneficial for comprehensive care, as this gave participants the “bigger picture” or “broader lens” on AYA’s needs: “Knowing the family, and caring for the family, helps you make the right decisions regarding the adolescent’s health” (FP19). Participants also believed caring for AYAs’ families helped them gain trust among parents, and credibility among AYAs: “I think [AYA] implicitly understands, oh okay you get what’s going on with [my family]. It’s not talking in a vacuum” (FP16).
Participants described various degrees of involvement with families. For some members of the PHC team, working with families was their primary role: “A lot of my work is not per say with [AYAs]. My work is mostly with the parent[s] actually” (SW18). Some family physicians described working more with parents simply because AYAs were less likely to attend primary care appointments: “the parents are honestly more likely the ones to come in” (FP3). All participants expressed feeling comfortable working with families, though some expressed a desire for additional training with unique aspects of AYA care (e.g., assessing mature minor status, confidentiality issues). Participants acknowledged potential dilemmas (e.g., calling Child Family Services, parent-child conflict), but these were generally accepted as “part of the job” in family practice: “that’s just a challenge that exists in family medicine, any time, any age. I don’t feel it’s a downside” (FP19).
Overall, participants recognized their role to support families of AYAs, and the benefit of having parents involved for AYAs’ own treatment adherence: “A great deal depends on the family, and on the parents. If you don’t have buy-in from them, then how can you expect the [AYA] to buy into any of it? They can’t!” (N10). Most felt AYAs appreciated having parents involved in their chronic care: “often kids with chronic complex needs are quite happy for their families to be aware of what’s going on and kept informed” (FP21).
Role 3: Providing “holistic care” to AYAs (comprehensive primary care)
“I think our role is to care for the whole patient” (FP3). Participants described how their knowledge of the “whole patient” informed their understanding of AYAs’ clinical needs, barriers to their treatment adherence, and their preparedness for transition. Opportunities in primary care to monitor and assess important aspects of AYAs’ well-being were described, including: determinants of health (e.g., financial issues, housing supports), mental health and psychosocial concerns (e.g., peer relationships, learning issues, family stressors, coping skills), and “sensitive issues” (e.g., sexual health, contraceptive needs): “[AYAs] don’t come to the family doctor and just get asked about their chronic condition… even if that’s the only reason they come to see you” (FP13). This quote captured participants’ role in providing comprehensive care to AYAs, or care from a “global, and not just medical, standpoint” (FP5).
Some participants described working “collaboratively” or “hand-in-hand” with family physicians to provide comprehensive care within primary care. For example, one social worker participant routinely gathered information to inform treatment planning: “I’m kind of the puzzle keeper. I’m able to put those pieces of the puzzle together and give the [family] doctor a better history to make those decisions, to help them understand [AYA]” (SW14). Barriers to communication in PHC teams, between family physicians and other providers, were noted to interfere with providing comprehensive care to AYAs (e.g., physical proximity between PHC providers, lack of awareness of available PHC resources).
Role 4: “Empowering” AYA patients to develop “personal responsibility” (developmentally-appropriate, patient-centered care)
Participants described roles for “encouraging”, “empowering”, or “enabling” AYAs to take on more responsibility for their condition(s) as they became older. Participants recognized the transition to adult care as unique, given AYAs’ overlapping developmental transition: “These patients are not just moving from doctor A-to-B, like a lot of adult [patients] would be” (FP13). An important part of this role, regardless of age, was therefore empowering AYAs to develop self-management skills, and to focus on aspects of their care that were important to them:
“What’s most important to the cardiologist is the heart stuff, and what’s most important to the respirologist is the lung stuff. But, I think in family medicine, I can say to [my] patient, “Ok, there’s a lot of stuff going on, what’s most important to you? That’s what we can focus on” (FP3)
The process for AYAs to develop “autonomy around their healthcare”, described to start anywhere from 9-16 years old, was emphasized as a gradual process: “We encourage [AYAs] to gradually take more control… its part of the whole maturation process [of] becoming adults” (FP5). For younger AYAs, participants described “hand-holding”, “taking the lead” and “not expecting [younger AYAs] to take initiative. [Because] that’s not fair to a 13-year old. If you can see they need help, you just help [and] follow-up… not let them dwindle away” (FP11). Participants also described encouraging parents to discuss their involvement with their child’s care as they became older: “I always encourage [parents] to chat with their child at home, and ask them what they would like. [For example] do they want a parent to come in, or would they prefer to come in on their own?” (N10).
For older AYAs, participants explained transitioning AYAs into a “confidential sphere” and “training [AYAs] to be patients” or helping them to attend visits independently. They described gradually allowing AYAs to “lead” their appointments in primary care as they approach the age of transfer: “Even if parent is present, I encourage them to be the one to contribute the most” (FP16). Participants viewed meeting with older AYAs on their own as beneficial: “they are allowed to have a confidential relationship with me that doesn’t involve their parent… it lets them bring up any concerns at all. They don’t have to censor themselves - I think it promotes full disclosure” (FP5). One family physician participant held “graduation” visits with AYAs where they signed the family practice’s appointment policy (e.g., for cancellations/no-shows).
Participants’ role caring for families, and “gaining parents’ trust”, also facilitated their role of empowering AYAs: “Parents are usually concerned about [AYAs’] transition [to] caring for their own health independently. [Parents] can trust their kid is in good hands if they know the doctor… I think that’s a pretty unique role for family doctors” (FP19). Others described working one-on-one with parents to help them “let go” or “try to get them to take that little step back… allowing their child to start taking on more responsibility” (SW18). Importantly, participants described balancing parental involvement and AYA independence at transition.
Role 5: “Quarterbacking” transition care (coordinating specialist and/or community-based services)
All participants described providing some level of care coordination at transition for AYAs with chronic conditions. Different metaphors (“hub”, “linker”, “connector”, etc.) were used to describe the wide range of coordination roles, including: identifying “what’s available and appropriate” (outside primary care) for AYAs, making referrals to specialist and/or community-based services, providing system-level “navigation support”, etc. Some participants referred to their role as “quarterback” of care at transition: “[We] make sure everybody’s on the field. If somebody’s gonna go off the field, who’s gonna replace that person if needed. That’s an integral part of our job” (FP11).
Notably, all participants described care coordination as the most “time-consuming” role: “it’s a ton of time, energy… after-hours time” (FP3). Some felt pressured to “pick up the ball” when AYAs turned 18 years old, in spite of little specialist support: “it’s like ‘family doctor, go figure it out’” (FP11). This was perceived as particularly problematic when AYAs were transitioning from community-based services: “There’s no ‘hand-off’… If they leave a [community] organization, they kind of drop-off. Then come back to me when they’re in their early 20s, their mental health is really poorly controlled and they’ve got active addictions” (NP15). Other barriers to care coordination were also described, which may extend beyond the transition period (e.g., lack of remuneration, time required, lack of recommendations from specialists or community providers).
In the data, there were differing opinions in the data about how much transition care coordination should occur within primary care (versus by other providers). Some participants believed all care coordination should occur in primary care: “I truly think family doctors are the case managers… all [patient] information should always come back to the PCN, the family doctor” (SW18). Yet, some participating family physicians asserted it should not be their role to find adult specialists for AYAs, especially if they are not involved prior to transfer: “it should be the [provider] who is seeing them most [before age 18], so they know what [AYA] needs” (FP2). Others believed AYA’s pediatrician should be the “main care coordinator” at transfer, and continue to follow AYAs during the transition period. Few participants described instances of “shared care”, or co-managing care between PHC and AYAs’ other providers prior to transfer. Some felt uncertain if specialists would be receptive to this model: “I always put my cell phone number on the bottom of referrals… but I don’t know how open [specialist] physicians are to that” (FP3). Overall, instances of collaboration and coordination during transition between PHC providers and those outside of primary care were variable among participants.
Summary and Relationship Between Themes
The five key roles identified by participants were interrelated (see Figure 1). Prior to the transition to adulthood, the longitudinal patient-provider relationship PHC providers develop with AYAs (Role 1) and their families (Role 2) allows them to assume Roles 3 and 4, which include providing “holistic” care and assessing AYAs’ transition preparedness, as well as empowering AYAs to develop autonomy and personal responsibility for their care. Participants perceived Roles 1-4 were key to facilitate their role in “quarterbacking care”, such as coordinating specialist and/or community-based services during the transition period (Role 5). This ‘quarterback’ role was perceived as difficult for PHC providers if AYAs “don’t have a relationship with us” or were not known to PHC providers prior to AYAs exiting pediatric services.
Table 3. Barriers and facilitators associated with each Primary Health Care (PHC) role
PHC role
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Examples in practice
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Barriers to this role
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Facilitators to this role
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Role 1:
Being a “common thread” across the patient’s lifespan (continuous accessible care)
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- Being involved as the PHC provider since birth and all life transitions
- Being accessible for routine follow-up appointments (e.g., every 3-6 months) depending on condition
- Managing appointments around school schedules (e.g., after-school hours, university breaks, etc.)
|
- AYA only followed by pediatrician prior to age 18
- Families/AYA do not attend regular appointments
- Minimal involvement by family physician with specialist care
- Families/AYA re-locating
- Continual family physician involvement not promoted as conventional practice
- AYA/family lack of understanding of role of “why” they need family physician; no “buy-in”
- Lack of access to psychosocial supports in primary care
|
- AYA/families continue to see family physician on regular basis
- Trust and long-standing relationship between AYA patient and PHC provider
- Convenient appointment times for AYAs
- Team-based PHC care
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Role 2:
Providing “holistic care” to AYA (comprehensive team-based primary care)
|
- · Assessing and managing mental health issues
- · Discussing bullying and school
- · Discussing sexual health
- · Assessing safety (e.g., suicidal ideation)
- · Identifying need for supports (e.g., financial assistance, housing)
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- · Not knowing available resources in primary care
- · Age cut-offs for available psychosocial supports in primary care; e.g., Nurse only on adult side, or supports only for pediatric populations
- · Lack of specialist recommendations for managing within primary care
- · Lack of familiarity with less common, complex medical conditions (e.g., cystic fibrosis, non-verbal AYAs)
- · Resources not accessible for AYA (e.g., location, resource fees)
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- · Having multidisciplinary resources within primary care
- · Accessible mental health resources and supports
- · PHC provider role recognized/trusted by other providers on team
- · ‘Team’ works under one roof
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Role 3:
“We know the families”
(family-partnered care)
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- · Caring for parents and/or extended family members of AYA
- · Checking-in with parents about AYA’s condition
- · Providing parenting supports (e.g., family counselling)
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- · Family members do not belong to PCN
- · Uncertainty with addressing legal concerns (e.g., confidentiality)
- · Practices not “family friendly” or “welcoming” to AYA
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- · Family prepared to transfer some responsibility of care to AYA patient
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Role 4: “Empowering” AYA patients to develop “personal responsibility” (developmentally-appropriate care)
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- · Helping AYAs develop more responsibility for care
- · Teaching self-management skills
- · Meeting with AYAs on their own without parents
- · Taking a harm-reduction approach
- · Assessing and documenting mature minor status
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- · Parents who are “challenging” or “will not let go”
- · Lack of adolescent health specific training
- · Practices not “family friendly” or “welcoming” to AYA
- · Lack of time during appointments
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- · Involvement of parents/family members in process of AYA independence
- · Specialist providers preparing some support for the transfer to adult care
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Role 5: “Quarterback-ing” for AYA (coordinating specialist and community-based care)
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- · Making referrals to specialists
- · Connecting patients with community-based supports
- · Helping patients navigate the health system
- · Getting a ‘team’ around patient
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- · Considerable time required
- · Lack of specialist support during coordination
- · No knowledge of available community resources
- · Lengthy wait-lists for mental health services
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- · Organizing clear treatment plans from other care providers
- · Alternate payment models to allow for time required for ‘complex’ cases
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Note. PHC = Primary Health Care