Accessibility to dedicated health care support was a key issue for the participants in this study requiring TS and OCD treatments for their children. Despite the small sample size, access issues were diverse and covered a range of difficulties.
The impact of cost and distance
Participants in this study reported that cost and affordability were determining factors for them to access health care professionals who were not covered by the government health care plan. At the outset of finding health care support, whether families had medical benefit packages was decisive in making healthcare decisions. The “exorbitant” costs of multiple visits to psychologists and therapists added to the problem of regularly attending vital sessions. Faced with the choice of terminating treatment for their child, parents just paid up: “So that’s $400 a week for a year. So I think there needs to be more in the province for families that can’t do that as well, that can’t afford to pay for it, I mean Dr. A got us through some pretty rough times, but we just paid.” (Parent Interview 1) Once families were able to directly receive treatment from government paid mental health professionals, the burden of cost lessened. The location of the TS and OCD clinic in Alberta is only convenient for families living in the center of the province. For these families, the impact of travelling to receive health care was minimal. Some made an 800-km round trip, taking more than 5 h each way, which was an intolerable distance and time investment. For others, it was a prohibitive cost, too.
First access: lack of a pathway
The participants often stated the first point of contact when trying to find and locate resources was their family physician. However, this did not always lead directly to a referral to a specialist. Family physicians were as likely to refer children to a specialist as they were not to refer at all. Some parents were assisted by child services, their child’s school, or they made the connection themselves. A coherent pathway to treatment was evidently absent, and on occasion parents met with the frustration of the inefficiencies of inter-health care practice communication. In such cases, access to treatment was gained by the persistence and diligence of individual health care workers. Moreover, the experience of initial engagement with health care services was, for some families, repeatedly reported as inadequate: “The nurse or my family physician, basically they sent the referral to Edmonton, they sent it back and said it’s no good; they tried it again, sent it back; they did a bunch of phone calls, were getting sent in circles, and then finally, actually phoned someone who happened to mention try Calgary and then that’s how she actually found the Movement Disorder Clinic, but it took probably 4 months of her phoning all over the place.” (Parent Interview 5) Though this was not the experience of all families, the lack of assistance navigating a route to treatment was viewed as atomized and “broken.” The struggle to find interconnected, continuous treatment underlined parents’ anxieties. The point of initial contact with a clinician was often the beginning of a difficult process to be directed to appropriate health care support: “Lack of navigation assistance or tools leave parents to wander through a segmented and broken system hoping to stumble into supports and therapies that will be effective.” (Free text from survey).
Participants felt hindered by the inertia of the health system: infrequent hospital appointments, misplaced referrals, lack of available resources, or a system designed for adult patients.
Notwithstanding these systemic issues with access, timeliness of treatment for some participants, once the health care system was accessed, was acceptable: “And the wait time didn’t matter, like to me it didn’t matter. We had waited so long, like what, even what was a year, like a year, okay, so we will be on the waitlist for a year, but it didn’t matter.” (Parent Interview 2) However, this belied the fact that participants were willing to overlook the unreasonably long wait times in the knowledge their child would eventually attend a specialized clinic. Wait times to see a psychiatrist ranged from 3 months to a few years. Tardiness of access to treatment was associated with the inefficiencies of the health care system, and even if families were detrimentally affected by this, their attitude to waiting indicated stoic acceptance: “Considering some people have to wait 3 years to see somebody, I don’t feel we waited too long.” (Parent Interview 6).
Participants described the stress of full-time work as an obstacle to attending appointments. The inconvenience of day-time appointments, at clinics located hours from home, produced work-related pressures: “We gotta take off time from work, time from school because he [the health care provider] only comes in once a month. I can’t book it on my day off or his.” (Parent Interview 4) Participants who did not work outlined their relative advantage, one that also enabled them to do more independent research when finding resources that were not readily available in their community or from their family doctor: “When they went to school, I can sit down and start looking on the internet, and I could make appointments to my family doctor and go. I didn’t have to take time off work to do that…” (Parent Interview 1).
Knowledge and skills
The knowledge gap
The findings from the interviews provide a picture of family physicians and healthcare workers who were at once obliging and disposed to helping families but simultaneously impeded by their lack of knowledge of TS and OCD—resulting in family frustration and, on occasion, confusion. This clinical paradox is most accurately underlined in the following participant’s comment: “My experience, overall, as far as their wanting to help and their attempts to try and find us solutions has been very positive but lack of expertise and lack of access to resources that they had has just made it a frustrating experience.” (Parent Interview 5).
Furthermore, our participants note that finding a pediatrician or a GP with the requisite knowledge was based, in some cases, on luck, resulting in an overriding sense of disappointment with the system. Misdiagnosis, lack of diagnosis, or an unwillingness to listen to families’ concerns about treatment choices were cited as other reasons for frustration by the participants: “Lack of properly trained therapists and doctor’s leads to long wait lists, misdiagnosis, and lost opportunities and patients go without interventions.” (Free text from survey) Most participants had fears regarding their own insufficient knowledge about medication, which were compounded by some doctors’ insistence on using medication rather than pursuing alternative treatments such as cognitive behavioral therapy: “They all want to just medicate your child.” (Parent Interview 8).
Level of expertise
Higher levels of satisfaction regarding quality of care were revealed in the participants' comments once they accessed clinicians with expertise in TS and OCD: “It took a little while to get help but once we were referred to [specialist], we've had good care since.” (Parent Interview 3) Participants’ experiences at the dedicated TS and OCD clinics were often rated as very good in terms of professionalism, seriousness, and access to dedicated resources: “When we finally got to the Movement Disorder Clinic because we finally felt like somebody actually took this seriously and didn’t just tell my child it’s all in your head.” (Parent Interview 5).
Theme 2: Being a student with TS and/or OCD in Alberta
Our study inquired about the experiences of children and their families within the school system. Family experiences showed that schools often lack the levels of knowledge and preparedness to effectively support the learning of children with TS and OCD in the classroom. Moreover, our study found that participants repeatedly found themselves as agents of the schools’ path to understanding the health issues and comorbidities of these conditions: “Well for us, helping the school manage it was a big thing so I guess, I don’t know if there’s any kind of education that the health care system can provide to schools that have a child with Tourette syndrome….” (Parent Interview 6).
Insufficient knowledge of TS and OCD
In different schools, strategies supporting children with TS and OCD either did not exist or were perfunctorily acknowledged, creating an environment in which children were unable to fully participate. An increasingly common narrative shared by participants was that principals, schools, and education boards were wilfully unsupportive due to the disruption attending to children with TS and OCD would cause: “Teachers would have a tendency to send my child out of the room or tell us to come get them because they’re being disruptive.” (Parent Interview 5) Conversely, some participants foregrounded principals and teachers who work within the limits of the system, employing educational strategies to enable children to achieve success, and were receptive to strategies to help in the classroom: “He can have a reader for his exams. He can take his exams outside the classroom. He has time, extra time if he is required, as needed, to help him be successful at school.” (Parent Interview 9).
Parent as agent
Schools, however, operate in a context of promoting access to successful learning for all children in the classroom, and to ensure children with TS and OCD are included in achieving this objective, participants reported how frequently they shared educational strategies and their child’s diagnosis with the school. Parents’ interaction with the school and classroom happened in a variety of ways: parents gave in-class presentations, Tourette Canada’s handbooks were disseminated in schools, teachers were directed to specific online resources, mental health workers were brought into school to present to staff and students, parents had one-on-one chats with classroom teachers: “It’s really up to the parent to advocate and tell them what you know.” (Parent Interview 1) This parental advocacy role was a crucial vehicle for raising awareness of the needs of children with TS and OCD in the classroom. Participants who did not take on this intermediary role reflected that resources for parents took precedence over those for teachers: “no, resources for parents: number one,” (Parent Interview 10) Moreover, some felt teachers should already possess requisite knowledge, “Should be trained on how to deal with Tourette’s if they’re a special needs teacher.” (Parent Interview 8) These views describe participants who felt their or their child’s need was the priority, rather than the needs of teachers.