Exploration of inter-jurisdictional TB programming and mobility in a Canadian First Nation community | BMC Public Health

Overview of TB prevention and care programming in Alberta and Saskatchewan

Although national standards underwrite all provincial TB prevention and care activity in Canada (see the then current 7^th Edition of the Canadian TB Standards, 2014), it is up to each of the 13 provinces and 3 territories in Canada to decide how services are delivered. In Saskatchewan and Alberta there were notable similarities and differences in program delivery.

It emerged that TB programming in the two provinces was organized differently. In Alberta, there is one program delivered out of three public health TB clinics, one free standing outpatient clinic in each of the two major cities and a third virtual clinic serving all of rural Alberta, including all reserve communities. They operate within a single province wide health authority (Alberta Health Services). At the time the virtual clinic had a contractual arrangement with the First Nations and Inuit Health Branch of Health Canada to provide TB services on-reserve [33, 34], see Fig. 1a. Saskatchewan also has a single Saskatchewan Health Authority, under which TB Prevention and Care Saskatchewan operates to deliver care province-wide. According to health worker interviews from Saskatchewan (see below), there are three TB program zones, each of which is led by a public health nurse. The TB Program Worker Handbook [35] specifies these as the central TB program, the NITHA TB program, and the South TB program (Fig. 1b). NITHA has a contractual arrangement with the First Nations and Inuit Health Branch of Health Canada, Saskatchewan Region, with a mandate to coordinate and provide care for all northern First Nations. According to health worker interviews, NITHA is a third level organization that provides first level support for TB in northern Saskatchewan reserves. These supports include assistance with contact investigations, TB training for TB workers and new community health nurses, and data collection. No comparable organization exists in Alberta. Mobile patients in the region must navigate this jurisdictional quagmire out of necessity.

Until October 26^th 2020, “Saskatchewan used a combination of mobile and telehealth methods….there’s no set amount of clinics per year per month or anything, it’s based on needs, on average we were doing them once a month” [TB Nurse 1, Saskatchewan C]. These mobile clinics travelled to C from the major city of Saskatoon. They served Community C as well as neighbouring communities, including R. Recently these travelling clinics were abandoned in favour of a virtual clinic model similar to that in Alberta [36].

The active treatment procedure is described in the national recommendations, which are standardized and unambiguous and this came across in both the health worker interviews and both Alberta and Saskatchewan provincial TB documents. According to the national standards, once active TB is confirmed the treatment is in two phases, an initial intensive phase which usually lasts two months and a continuation phase which usually lasts four months. Multiple drugs are administered in each phase. According to healthcare workers from both Alberta and Saskatchewan, the duration can range from six months up to 18 months. The length of time of treatment varies according to risk factors, patient compliance, and other life and environmental factors. “…if they can take their doses all the time and they’re diligent with it takes them 6 months or I’ve had [a] client go up to 18 months because they’re missing so many doses.” [TB nurse 1, Saskatchewan C]. Directly observed therapy (DOT) is provide to all patients in both provinces. Healthcare workers in Alberta and Saskatchewan described DOT as an opportunity to build trusting relationships with their patients and create a positive experience. TB workers performing DOT supervision act as a point of support while simultaneously promoting treatment adherence. Under exceptional circumstances, medication for the cure of active TB disease in Alberta and Saskatchewan may be self-administered.

In Sect. 60 of TB Prevention and Control Saskatchewan Clinical Policies and Procedures [37] home isolation is commonly recommended during the infectious period rather than isolation in a treatment facility. The alternative to home isolation is isolation in a hospital, often at a great distance from the patient’s home. Hospital isolation may be necessary to manage severe or highly infectious forms of disease, complications of the disease, drug intolerance or reactions. Hospitalization for purposes of respiratory isolation was more common in Alberta than Saskatchewan.

In both provinces contact investigations are routinely performed for all pulmonary cases. In addition to the names of individual close, particularly household, contacts, these investigations include gathering information on places of residence, work, and recreation, as well as the timing and duration of exposures. Contacts are grouped into high priority, medium priority, and low priority based on their risk of being infected and progressing to active disease. It is often difficult to determine the exact period of infectiousness of the index case, but generally it is recommended to consider starting contact investigations from three months before the onset of respiratory symptoms. During interviews, the complexities and substantial resources required for contact investigations were emphasized.

Yes it can be quite huge, which spills over usually from the province (off-reserve community) on to reserve so you get fewer contacts, and you can go up to 100 or 150 people on a contact trace…… they have to all be notified that at some point … that they’ve all been in contact of an active case of TB [TB nurse 2 in R, dual community/health care provider interviewee]

A notable programmatic difference between Alberta and Saskatchewan exists in the provision of preventative therapy for latent TB infection. In Alberta, preventative therapy is offered to all age groups and is the standard of care [38]. In Saskatchewan, however, only children under the age of 15 are prescribed preventative treatment, with individuals over the age of 15 considered eligible on an individual basis [39]. More recently, the Saskatchewan Health Authority in partnership with the Northern Inter-Tribal Health Authority, implemented a community mobilization initiative to expand TB preventative treatment for all age groups in communities R and C.

These typical features of TB programs are aimed at achieving TB elimination. TB elimination depends on employing, in equal measure, a two-pronged approach to management: 1) prevent disease among those infected, and 2) interrupt transmission of the organism among those with active infectious disease [3, 38]. Yet, each previously described step may be challenged by persons moving in and out of reach as a function of their mobility. The impact of mobility on the delivery of TB services, as witnessed by both patients and providers, is underreported.

Role of mobility in a First Nation community

Interviews with community members and community healthcare workers revealed that mobility in and out of smaller northern communities is a necessity and a norm. Mobility was identified as very common and essential by both Alberta and Saskatchewan healthcare workers.

…community of R doesn’t have a lot of recreational activities …there’s limited resources, lack of education, family, and overcrowding [dual community member/healthcare provider interviewee 2]

Some people never feel sick enough to stop (i.e mobility and travel) or really change their behavior (i.e mobility and travel out of community) other than that maybe they have a nagging cough they can’t get rid of, so that’s what causes them to present not necessarily, like they can’t do their work or play like normal or it may be slowing them down but not as readily, it kind of varies. [TB Program Coordinator, Alberta]

Community members travel between different jurisdictions from on-reserve to off-reserve and between provinces. Within the overarching theme of motivations for mobility, it is categorized to stick, push, and pull factors [19] as shown in Table 2. According to community interviews, R is geographically isolated, so mobility is required to address local food security, for entertainment, maintaining kinship, medical care, employment opportunities and educational opportunities (Table 2).

Definitely shopping because it’s so expensive in the north…… their prices are crazy and they often have sales but it’s not the same, it’s not a nice sale from Superstore [A grocery store found in larger communities]. Fort McMurray in the wintertime is 2 hours away or less because the local … people use that winter road. [dual community member/healthcare provider interviewee 1]

In addition, land-based activities such as hunting and trapping, and participating in an annual pilgrimage require mobility out of R. Every year in July I go there for they have a pilgrimage in July. It’s the third week in July. For the last 27 years I’ve been going there. [Community member (R) 1].

Throughout all the interviews, mobility as a necessity for healthcare access was emphasized. Interviewees identified mental health support, specialist support, hospitals, and dental care as needs for mobility out of the community.

Well I have doctor’s appointment, when I have doctor’s appointment in PA, Saskatoon, Meadow [Meadow Lake], Battleford [North Battleford]…… Lately I’m going to PA, every 3 years I go to PA, I go up there for counselling [Community member (R) 1]

Common destinations out of R were both inter and intra provincial and both on-reserve (federal), and off-reserve (provincial) (Fig. 2). Moreover, seasonality exerted an influence on mobility of people in the region. For example, mobility out of R to Alberta increased in the winter months with the opening of winter roads that significantly decrease travel time. Interestingly, interviewees from R did not consider C, the neighbouring village, to be a destination but instead a part of their daily life. However, for purposes of TB control, C operates within a separate jurisdiction of care (the province in C, Northern Inter-Tribal Health Authority in R).

TB care and mobility

Several interviewed community members spoke of the TB experience in the community. The connection between history and contemporary TB was evident in the stories members shared.

It’s interesting you said TB because my aunt years and years ago went to one of those institutions for sanitoriums and she was there for many years, my grandmother and she was finally released but she had told me many horror stories. [Community member 2]

….it’s a disease that’s plagued our communities for so long for like so many years and yet it’s kind of like even though we suffer the consequences of TB you know the government doesn’t take it as seriously and is not implementing enough measures to make sure that you know that our First Nations communities are safe and are healthy…. And having said that I just feel, when I hear the word TB it’s a really threatening subject for me, a real threatening topic. [Community member 6]

The contemporary TB experience is coloured by history and colonialism. There were similarities between the reasons cited for the high incidence of TB in the community (R) and the reasons cited for mobility, such as access to resources and lack of housing. “TB is in the community because there’s limited resources, lack of education, family and overcrowding, and most important for elimination is education.” [Community/health worker 3]. Many spoke of needing to travel for healthcare and having appointments in several different communities across SK. “Travel to me is majority like medical travels usually in Saskatoon” [Community member 2]. Others spoke of the realities of trying to access medical care from R.

….I’ve been trying to see a doctor for the last 3 months. Because you’ve got to phone from 9 o’clock in the morning. For the last 3 months I phoned…I want to see the doctor like today not in July or May, I’ve been sick for a while, I don’t want to go up to the hospital (in the city). [Community member 1]

Traveling for medical care includes urban centers located four to six hours away from community R, including for dental, counselling, hospital, and other medical purposes. Mobility out of the community is a necessity for access to healthcare but may also act as a disruptor of care as identified by health workers.

Mobility across jurisdictions was identified by healthcare workers as a major disruptor of contact investigations – a cornerstone of TB programming. Contact investigations were especially resource intensive and operationally challenging if contacts were identified in multiple locations.

So if we have somebody [home destination is in R] working in Alberta or just coming back and forth between family…I would gather their information as much information from the index case as I can…..And then I send that off to TB control (Saskatchewan) and then TB control would contact Alberta TB services [TB Nurse 1 in C]

Once information reaches TB services in Alberta, work gets underway to find and assess all local contacts of the patient with TB. This requires back and forth communication between provinces. The difficulty with performing contact investigations was shared by multiple healthcare workers.

We try our best, some people do end up falling through cracks still because it’s just it can get quite complicated. Especially if someone is taking off to Alberta and then we finally realize a week or two later where they are. And we get phone numbers and so it can get quite complicated and difficult to deal with. [dual community member/healthcare provider interviewee 2]

The success of contact investigations is a function of the timely completion of each step in the cascade of care. Timeliness might be difficult to achieve across jurisdictions. Interviewees indicated that a lack of direction in this regard in both provincial and national guidelines has resulted in ad-hoc mechanisms for ensuring continuity of care.

The extension of responsibility was especially evident in the provision of DOT, whether it be for active TB or latent infection. Interviews with healthcare workers indicated that DOT care is provided to the patient with flexibility. As such, if a patient on treatment is mobile, healthcare workers attempt to make DOT available to them wherever they are located. Providers of DOT to patients in remote locations are, in this regard, at a great disadvantage. Interviews with healthcare workers not infrequently mentioned driving 50 km or more to provide DOT to patients who had traveled or who reside at a distance. Though there are no standard operating procedures in place, it is common for healthcare workers in the neighbouring communities of R and C to work closely with one another to support patients on DOT. Healthcare workers in C and R extend their jurisdictions to facilitate patients’ needs as well as to provide services to nearby communities.

I think we just kind of adopted that same mindset that we continue to go out there whenever services, or, you know, like TB meds needs to be given, wherever the person is. Doesn’t matter if they’re here or in [other nearby communities] [TB nurse 1, C]

The ad-hoc process identified by Saskatchewan healthcare workers for intra-provincial mobility differs from mechanisms that support mobile patients across provincial borders.

Even say for instance this guy here that we were supposed to be seeing in (Anonymous community) so every year he goes to work (Anonymous seasonal workplace) in Alberta and he’s supposed to be leaving today.….. I will call TB control Saskatchewan and let them know, you know this is the plan they tell us, and we known for about 2 weeks now that he’s leaving. Then they will touch base with TB control in Alberta and make arrangements for his med delivery and follow ups need to be done. [TB nurse 1]

Interviews elucidated the entire process as such: community-based health care workers contact Provincial TB prevention and care in Saskatchewan, who in turn notify Provincial TB prevention and care in Alberta. There is a form that is completed to refer mobile patients between programs. The responsibility for the completion and forwarding of the form is by an individual in the provincial program rather than by healthcare workers directly involved in TB care. However, community-based healthcare workers indicated they were wholly unaware of the existence of these referral forms during interviews, in part perhaps because of turnover of staff. There may also be direct communication between nurses or other front-line workers in the destination community and R. However, these lines of communication were not always clear.

Healthcare workers identified several recommendations for improving communication and coordination between jurisdictions. One physician noted: “As you know some communities are fly-in only, but most importantly what I think should be happening more effectively is a coordination between these two provinces.” [Physician 2, Saskatchewan]. Similarly, another physician identified the need for an approach that works beyond the local, and specifically cited the need to consider them within larger systems.

….the situation when you deal with population health you need to have intersectoral collaboration at different levels…..just want to acknowledge the importance of knowing small geographies….In this kind of whatever geographical system, they need to be more focussed on the community level and at an individual community criteria. [Physician 3, Saskatchewan]

Health Canada’s Strategy against TB for First Nations on-Reserve [40] posits the crucial need to “identify challenges and implement corrective actions as necessary for treatment interruptions and failures, patient mobility and seamlessness of services, disease relapse and drug resistance”. Community participants have identified mobility as a necessity and a challenge for receiving proper healthcare. Currently, much of the responsibility of reaching proper care is the responsibility of community members. Moreover, the aforementioned strategy recommends standardized reporting across jurisdictions, but this has not yet been realized. In 2011 an ad-hoc interprovincial TB Working group (prairies) was established to share information about programmatic challenges, including mobile patients and to collaborate on interventions [41]. Later, this group expanded to become the Canadian TB Elimination Network technical group. It now includes programmatic leaders from all provinces and territories. The existence of these groups and their relationship to delivery of services appeared unknown to healthcare workers interviewed in this study. For example, many of these interviewees called for partnerships and programming through consideration of local epidemiology, though in principle the aforementioned networks fulfill these roles. One significant issue identified by a physician in Saskatchewan is the lack of capacity currently available for creating new policy:

….the demand for policy and implementation is sort of well in excess of our capacity. So we have to prioritize, and therefore if something is generally working well and it doesn’t have a policy, it gets a lower priority because then we’re focused on the policies that aren’t working well. [Physician 1, Saskatchewan]

Physicians, nurses, and TB workers continue to call for improved jurisdictional collaboration and policies to address mobility and the disconnection between the multiple jurisdictions in the prairies and nationally. However, to date, this study has not found specific policies and programming to address these calls. Beyond this community members call for an increase in education to tackle TB. “there’s not enough education for our children, there’s not enough healthcare present” [Community member 6].