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Managing Matajoosh: determinants of first Nations’ cancer care decisions Lavoie, Josée G; Kaufert, Joseph; Browne, Annette J; O’Neil, John D Aug 18, 2016

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RESEARCH ARTICLE Open AccessManaging Matajoosh: detesdatfdimanitosis (worm, spider-like bug) and manicosak (mag-gots) that are used in some communities to explain thethough colorectal cancer (CRC) related mortality is onthe decline in Manitoba, this decline is only experiencedtus, which in-showing anhave repeat-e poorer sur-Lavoie et al. BMC Health Services Research  (2016) 16:402 DOI 10.1186/s12913-016-1665-2727 McDermot Avenue, Winnipeg, MB R3P 3E4, CanadaFull list of author information is available at the end of the articlevival rates once diagnosed with cancer [6, 7]. Althoughscholars have documented the experience of Australian* Correspondence: Josee.lavoie@umanitoba.ca1MFN – Centre for Aboriginal Health Research, University of Manitoba, #715,become the leading cause of death among CanadianFirst Nation males and the second leading cause amongFirst Nation females. In the province of Manitoba, wheretoba residents of lower socio-economic stacludes most First Nations, are in factincrease in mortality from CRC [5]. Studiesedly reported that First Nation peoples havdevastating effects of the disease. Since 1991, cancer has by individuals of higher socio-economic status. Mani-decisions are further complicated by the unique policy and socio-historical contexts affecting many First Nationpeoples in Canada. These contexts often intersect with negative healthcare experiences which can be related tojurisdictional confusion encountered when seeking care. Given the rising incidence of cancer within First Nationpopulations, there is a growing potential for negative health outcomes.Methods: The analysis presented in this paper focuses on the experience of First Nation peoples’ access to cancercare in the province of Manitoba. We analyzed policy documents and government websites; interviewed individualswho have experienced relocation (N = 5), family members (N = 8), healthcare providers and administrators (N = 15).Results: Although the healthcare providers (social workers, physicians, nurses, patient navigators, andadministrators) we interviewed wanted to assist patients and their families, the focus of care remained informedby patients’ clinical reality, without recognition of the context which impacts and constrains access to cancer careservices. Contrasting and converging narratives identify barriers to early diagnosis, poor coordination of care acrossjurisdictions and logistic complexities that result in fatigue and undermine adherence. Providers and decision-makers who were aware of this broader context were not empowered to address system’s limitations.Conclusions: We argue that a whole system’s approach is required in order to address these limitations.Keywords: Indigenous, Canada, Health equity, Access, Primary care, Primary healthcareAbbreviations: CCMB, Cancer care Manitoba; FNIHB, First Nations and Inuit Health Branch of Health Canada;FPs, Family Physicians (FPs); NIHB, Non-insured health benefit program; WRHA, Winnipeg Regional Health AuthorityBackgroundMatajoosh is an Ojibway word for ‘cancer’, which trans-lates as “worm eating at your insides” [1, p. 457]. Hart-Wasekeesikaw [2] and Orchard [3] explored theAnishinaabe metaphor of “manitoch” (cancer as worm),data on relocation for First Nation peoples for cancercare was collected, increases in cancer incidence havebeen more modest (7 %) but increases in prematuremortality from cancer remains a concern [4]. A recentstudy by Torabi and colleagues [5] reported that al-Nations’ cancer care deciJosée G. Lavoie1*, Joseph Kaufert2, Annette J. Browne3 anAbstractBackground: Accessing cancer treatment requires First Neither commute to care, or to relocate to an urban centreliving in rural and remote communities must often make© 2016 The Author(s). Open Access This articInternational License (http://creativecommonsreproduction in any medium, provided you gthe Creative Commons license, and indicate if(http://creativecommons.org/publicdomain/zerminants of firstionsJohn D. O’Neil4ion peoples living in rural and remote communities toor the length or part of the treatment. While Canadiansfficult decisions following a cancer diagnosis, suchle is distributed under the terms of the Creative Commons Attribution 4.0.org/licenses/by/4.0/), which permits unrestricted use, distribution, andive appropriate credit to the original author(s) and the source, provide a link tochanges were made. The Creative Commons Public Domain Dedication waiverro/1.0/) applies to the data made available in this article, unless otherwise stated.Lavoie et al. BMC Health Services Research  (2016) 16:402 Page 2 of 12Aboriginal peoples in the pursuit of cancer care [8–10,for examples], similar work has yet to occur in Canada.Accessing cancer treatment requires First Nation indi-viduals living in rural and remote communities to eithercommute to care, or to relocate to an urban centre, inthis case the capital, Winnipeg, for the length or part ofthe treatment. An alternative is for the patient to decidenot to pursue acute cancer care. While Canadians livingin rural and remote communities must often makedifficult decisions following a cancer diagnosis, such de-cisions are further complicated by the unique policy andsocio-historical contexts affecting many First Nationpeoples in Canada. These contexts often intersect withnegative healthcare experiences [11, 12] and jurisdic-tional confusion encountered when seeking care [13].Given the rising incidence of cancer within First Nationpopulations, there is a growing potential for negativehealth outcomes.In our initial overview publication, we document FirstNation peoples’ experiences of medical relocation,highlighting policy-related issues [13]. Ambiguity anddiscontent in policy and mid-level decision-making havebeen longstanding problems for First Nation peoples liv-ing in rural and remote regions of Canada [14], made re-cently more complex because of shifts in accountabilitythat resulted in more sharply defined and less flexiblepolicies, undermining decision-makers’ discretion, prag-matic compromises and responsiveness [13]. In thispaper, we take a closer look at the particular set of con-texts that influence First Nation peoples’ access to andexperience of cancer care. This is our entry point foranalysis in this paper. Our objectives are two fold. First,we critically explore how the contexts of peoples’ livesintersect with structural barriers to shape peoples’ accessto care and expectations of cancer care. Second, wehighlight policy issues shaping healthcare experiencesand outcomes. We propose to foreground the voices ofpatients and family members in explaining their own ortheir family members’ cancer care journey, and comple-ment these perspectives with those of providers.The next section provides an overview of the methodsused to gather and analyse the evidence discussed in thispaper. The research findings are described in two sec-tions that summarize the context of cancer care inManitoba, based on the cancer journey of participantsand the perspective of providers. The last section dis-cusses key themes, implications for policy and healthcaredelivery, and conclusions.The jurisdictional context of cancer care in ManitobaManitobans access cancer care from a spectrum of rela-tively autonomous and at times, loosely integrated net-works of service providers, including Family Physicians(FPs) and specialists working in publicly funded privatepractice. In addition, CancerCare Manitoba (CCMB) isresponsible for providing care, treatment and supportacross the entire cancer service spectrum. If living on-reserve, the first point of care is generally the on-reserveclinic [see 15 for a detailed description], which is feder-ally funded by the First Nations and Inuit Health Branchof Health Canada (FNIHB, the federal authority thatfunds health services on-reserve and approves access tomedical transportation) and in most cases, locally man-aged by a First Nation authority. In Manitoba 15 % ofthe population identifies as First Nations. Services at on-reserve Nursing Stations and Health Centres aregenerally provided by part time or full time nursingstaff, community health services (primary prevention,immunization), supported by locally hired parapro-fessional providers who assist with planning clinics,home care, education and cultural liaising. Some lar-ger communities have full time nursing staff, who inaddition to the above, also provide some primarycare services, supplemented with visiting primarycare and specialist clinics. The federal-provincialjurisdictional divide is embedded in the CanadianConstitution, and likely to remain for years to come.Jurisdictional ambiguities have been repeatedly docu-mented across Canada [16] and in Manitoba [17],leading to discontinuities of care and logistical fa-tigue when coordinating and seeking care [13].Although participation in cancer screening programshas improved over time, especially for cervical cancerscreening [18], barriers to early detection remain. ForFirst Nations living on-reserve, screening programs (withthe exception of cervical cancer screening), which arecurrently understood as a matter of provincial jurisdiction,are not accessible on-reserve. Although the federallyfunded Non-Insured Health Benefit (NIHB) program as-sists First Nations living on-reserve with medical transpor-tation expenses when care is required, this program doesnot support transportation for screening purposes [6].This program instead is limited to transportation foremergency care, and medically necessary care, as deter-mined by a FP.Some communities receive primary care services fromprovincially funded visiting FPs (often “fly-in” in remotecommunities). Anecdotal evidence however suggeststhat needs often exceed supply, and that some visitingFPs provide “walk-in clinic” type of care during a visitexpecting First Nations to access “their regular” FP forproblems requiring further investigation, not realizingthat most First Nations do not have a regular FP ensur-ing continuity of care. Challenges related to the recruit-ment and retention of FPs willing to work in rural andremote communities undermine rural residents’ accessto first contact care in a timely manner, and results inpoorer quality and continuity of care [19]. JurisdictionalLavoie et al. BMC Health Services Research  (2016) 16:402 Page 3 of 12fragmentation, the poor integration of existing services,and high staff turnover where this is an issue, addadditional complexities [20].There is some documented evidence that First Nationsdiagnosed with breast cancer are often diagnosed at alater stage of the disease [21]. A lack of data on ethno-cultural identity in cancer datasets prevents a morecomprehensive understanding of the situation. The bar-riers to accessing screening discussed above are a likelyfactor. Once diagnosed, treatment may require a com-bination of surgeries, cancer drugs, chemotherapy, and/or radiation therapy. In Manitoba, where this study is lo-cated, some treatment may be accessed on an out-patient basis, in regional centres (off-reserve), but themajority of treatment modalities are accessible only intertiary care facilities located in Winnipeg. These ser-vices are under the purview of the provincial govern-ment and regional health authorities. An exception isout-patient access to some prescription medication,which is provided by the federally funded NIHB pro-gram. Palliative care is a possible end point in the con-tinuum of care, once treatment options are exhausted.In Manitoba, palliative care and especially pain control,is available in urban and to a limited extent in regionalcentres [22], but remains unavailable on-reserve. A studyof 692 palliative care telephone consultations in BritishColumbia documented that nearly one third of all callscame from patient living in communities with a popula-tion under 5000. Almost half (49 %) of these consulta-tions were for pain management [23], suggesting unmetneeds in rural and remote communities. This contextshapes First Nation peoples’ experience of cancer care,and provides a necessary backdrop to this study.MethodologyThis paper reports selected findings from a larger studythat aimed to a) document the policy framework thatcurrently shapes the experience of medical relocation/multilocality; and b) document the experience of FirstNations as they negotiate jurisdictional boundaries andnavigate the health care system. For this study, we part-nered with the Nanaandawe Wigamiq – First NationHealth and Social Secretariat of Manitoba (a First Na-tions political organization formed in 1988 to advocateon issues that affect all First Nations in Manitoba) andfour First Nation communities. Ethical approval was re-ceived from the Health Research Ethics Board of theUniversity of Manitoba (HS11445-H2009:189). In eachcommunity, a partnership agreement was signed by theresearch team and the community leadership, detailingthe purpose and process of the study.The overall study was informed by interpretive inquiry,which is an understanding of knowledge as socially con-structed [24]. A total of 129 people participated in thestudy. Patients and family members comprised the lar-gest group at 70 participants. The perspectives of pro-viders and decision-makers were documented in 59interviews. As interviews unfolded, we continuouslymonitored the dataset for breath, to adequately reflectthe complexity and nuances reflected in the participants’experiences across different dimensions, including pol-icy, healthcare trajectories, rural and urban contexts,and across different conditions health conditions.Participating patients and family members reportedthat they had experienced relocation, either permanentlyor temporarily, to access specialized services includingdialysis, cancer, specialized maternal and child care, car-diovascular care, rheumatoid arthritis and because of anew or existing disability. The most common type of re-location mentioned was related to renal failure and theneed to access dialysis: this is the object of a forthcom-ing paper. Findings from the broader dataset havealready been published [13], and provide a necessarycontext for this analysis.This paper draws on interviews conducted with pa-tients, family members and healthcare providers whoserelocation experiences were directly related to seekingcancer care. This included in-depth, open-ended inter-views with 16 patients or family members (12 womenand 4 men) who spoke about their own healthcare expe-riences or those of family members with whom theywere closely involved. We also completed 15 in-depthinterviews with rural and urban health service providers.Characteristics are shown in Tables 1 and 2.Interviews were conducted in Winnipeg with First Na-tion peoples from any of the Manitoba 63 First Nationcommunities, and in 4 First Nation communities, follow-ing a purposive sampling framework. This approach iswell suited to the exploratory design used in this study,and was an effective method for ensuring the inclusionof participants who could discuss a diverse range of ex-periences. Providers were identified using a respondent-driven sampling process. To start, a group of key pro-viders were identified by the research team and stake-holders based on their role and expertise in thehealthcare system (for example, Patient Navigator) andwere asked to suggest other providers who could beapproached to provide narrative data on relocation. InWinnipeg, patients were contacted through the PatientNavigator program of the Nanaandawewigamig FirstNation Health and Social Secretariat. In communities,interviews with patients and family members were con-ducted at the community Health Centre, which is oftena focal point in the community. Healthcare providerswere asked to help identify individuals fitting our criteriaof having experience accessing health services outside ofthe community for a significant event (cancer, dialysis,rehabilitation following a stroke or car accident, etc.)Lavoie et al. BMC Health Services Research  (2016) 16:402 Page 4 of 12Table 1 Patient interviews, characteristicsInterviewnumberAge Gender Relating thestory ofType of cancer Other morbiditiesdiscussed002 59 Male Self Leukemia Heart condition,diabetes005 50 Male FemalepartnerBreast None mentionedMale child Leukemia None mentioned007 47 Female Self Uterus,stomachDiabetes renalfailure028 55 Female MalepartnerLung cancer Diabetes renalfailure029 60 Female Daughter Liver None mentioned031 N/A Female Sister Not specified None mentionedWe specifically asked to interview parents of childrenwho required care for significant periods of time. A con-sent form was provided and explained to the participant.We repeatedly reassured participants that their partici-pation was entirely voluntary and that they could with-draw from the study at any time. Many patients andfamily members stated that they were eager to tell theirstory. Pseudonyms have been given to communities toprotect privacy. Characteristics are shown in Table 3.All interviews were conducted by members of the re-search team (JL, JK, AB) and/or by a senior ResearchAssociate. Interviews lasted on average 45 min. Allinterviews were digitally recorded, transcribed verbatim,cleaned of any personal identifiers, and compared withthe audio recordings for technical accuracy. Using inter-pretive thematic analysis for qualitatively-derived data,the team reviewed the transcripts to identify concepts,processes, and linkages to theoretical perspectives asSelf Colon None mentioned033 N/A Male Sister Not specified None mentioned034 60 Male FemalepartnerStomach None mentioned050 39 Female Self Uterus None mentioned208 66 Female Daughter Breast None mentioned209 36 Female Grand-motherColon FrailtyFather MultiplemyelomaDiabetes210 45 Female Mother Not specified None mentioned213 45 Female Self Breast None mentionedaAs reported at the time of the interviewbNI/SI: Non-isolated or semi-isolated community. I:Isolated community, Letters refercOnce released from the hospital. In two cases, hospitalization in the city was longTrajectory of care Comm &typebOutcomeTraveling back and forth tocarecC, NI/SI No active disease reportedaTraveling back and forth tocarecC, NI/SI Died in a regional hospitalMoved to Winnipeg C, NI/SI Active treatmentTraveling back and forth tocarecC, NI/SI Active treatmentTraveling back and forth tocarecD, I Died at home, in the cityMoved to Winnipeg D, I Died in temporaryaccommodations, the cityMoved to Winnipeg D, I Died at home, in homecommunitywell as any recurring and contradictory patterns in thedata. NVivo 10, a qualitative data analysis software, wasused by two Research Assistants to independently codeand organize the interview data, using the code book(one for patients and one for providers) developed bythe research team. The code books were periodicallyreviewed and discussed by the research team, and com-pared to independent coding of transcripts completed byresearch team members, to ensure consistency in thecoding process. Over time, analysis shifted to a more ab-stract and conceptual representation of the processesand themes reflected in the data. Five broad themes arereflected in the data, related to, reasons for and trajec-tory of relocation (for examples, type of care needed,multi-relocations), care experience (for example, con-tinuity, discontinuity, responsiveness); basic needs (hous-ing, transportation, food); shifting social role (loss ofsocial and cultural status, isolation, family dynamics).Traveling back and forth tocarecD, I No active disease reportedaTraveling back and forth tocarecD, I Died in hospital, in the cityTraveling back and forth tocarecD, I Died in hospital, in the cityTraveling back and forth tocarecA, NI/SI No active disease reportedaTraveling back and forth tocarecD, I Active treatmentMoved to Winnipeg D, I Died in assisted living facility,in the cityDecided not to pursuecancer careD, I Died at home, in homecommunityMoved to Winnipeg D, I Died at home, in homecommunityTraveling back and forth tocarecD, I No active disease reportedas to community characteristics outlined in Table 3term (6 months), but once discharged, they came home and commuted to care(Patients 002, 029). In most others, hospitalization was briefand often involved surgery. Outpatient chemotherapy or ra-diation treatments followed. Only one person mentionedthat chemotherapy was accessible in a regional centrecloser to their own home community (Patient 005). For allothers, initial care was accessed in Winnipeg.Some were successfully treated and recovered (Patients02, 31, 50, 213). At the time of the interview, some sus-pected or knew that their cancer had recurred. Familymembers also related the story of loved ones who hadTable 2 Provider characteristicsInterview number Gender Category Title001 Female On-reserve Nurse supervisor018 Female Urban Patient navigator020 Female Urban Discharge coordinator023 Male Urban Translator025 Female Urban Social worker036 Female Urban Health services coordinator038 Female On-reserve Health directorLavoie et al. BMC Health Services Research  (2016) 16:402 Page 5 of 12Credibility of the analysis was continually evaluatedby members of our research team, who included ex-perts in ethnographic research, PHC services, FirstNation health and health equity. Preliminary resultswere presented to First Nation Health TechniciansNetwork (a group of First Nations Health Directorsto advise on interpretation). In these meetings, on-reserve healthcare providers affirmed that the themes039 Female On-reserve Transportation clerk040 Male Urban Care coordinator052 Female On-reserve Home care nurse055 Female Urban Palliative care coordinator056 Male Urban Director, Family physicianservices205 Female On-reserve Home care worker214 Female On-reserve Nurse502 Female On-reserve Home care workerreflected in the data resonated with their experienceworking with families and patients in the healthcaresector. Considerable theme overlap was found be-tween interviews conducted with patients and familymembers. These are presented together.ResultsFrom the time of diagnosis, patients who decided to seekor undertake cancer care (all except one in this dataset)travelled to Winnipeg to access care. Their length of stayvaried. In two cases, care required a lengthy hospitalizationTable 3 Participating First Nation community characteristicsLocal services Population on-reserve(2010)Level of care accCommunity A Health Office Between 750–1000 Part-time workfoprevention servicCommunity B Health Office Between 1250–1500 Part-time workfoprevention servicCommunity C Health Centre Between 1250–1500 Emergency, screavailable 5 daysor no after hourCommunity D Nursing station Between 1000–1250 Primary healthcaprevention, accedied (Patients 05, 28, 29, 31, 33, 34, 208, 209, and 210).Many of the patients and family members’ stories ofcancer journeys followed a similar pattern. Key factorsin patients’ decision-making are summarized in Table 4below.Challenges associated with patients navigatingthe systemFront line workers play a critical role in the care experi-ence of patients. All the healthcare providers (socialworkers, physicians, nurses, patient navigators, and ad-ministrators) we interviewed in this study were commit-ted and compassionate individuals who wanted to assistpatients and their families. One of the most prevalent is-sues raised in the provider interviews was the need forpatients to have access to more fully integrated services,and the importance for patients of having strong familysupport to mitigate challenges associated with accesscare and the impact of “logistical fatigue” in pursuingcare. One senior provider commented:[M]y colleagues were blown away about whereto even start to resolve [returning home], bothfrom a policy point of view, a human resourcespoint of view, a facility resource point of view…[G]oing from a northern nursing station bydedicated air ambulance to a tertiary care centre:we seem to have that just about right. But thereseemed to be huge difficulties in policy andprocedures in sending somebody home to receivecare (Provider 056).essible locally Closest point of care Distance toWinnipegrce, screening andes only.Between 50 and 100 km,local hospitals, FPsOver 600 kmrce, screening andes onlyBetween 50 and 100 km,local hospitals, FPsBetween 250and 300 kmening and preventionper week, with limitedcare locally.Under 10 km, local hospital, FPs Over 600 kmre treatment andssible 24/7.Winnipeg (no road access) 1 h flightalfotalidicpplsdicppquLavoie et al. BMC Health Services Research  (2016) 16:402 Page 6 of 12Policy challenges are related to the fragmented contextof care that requires First Nations to “cross” jurisdic-tional boundaries repeatedly to access care. This cross-ing back and forth is rarely seamless, generally requiresadvocacy by healthcare providers and often ends in de-lays while awaiting approvals.In Winnipeg, the Patient Advocate Unit at the Assem-bly of Manitoba Chiefs, and patient advocates and socialworkers from the Winnipeg Regional Health Authority(WRHA), advocate for patients to access necessary ser-vices such as housing, food, transportation, insurancecoverage for medication and patient discharge plans(Provider 18). Patient navigator programs have beenshown elsewhere to have a significant positive impact oncontinuity of care [25]. However, the social workers andpatient navigators we interviewed indicated that theircase load was overwhelming (Providers 18, 20).Some providers such as discharge planners discussedtheir role in assessing the patient’s needs, and workingwith the patient’s community to ensure continuity afterdischarge. These providers told us that despite jurisdic-tional fragmentation, it was still possible for service pro-viders to work together as a team to safely relocatepatients back to their communities (Providers 1, 20).[F]or palliative – like cancer… we try andaccommodate again as much as we possibly can. Now,[FNIHB] has a really – in the last couple cases here inTable 4 A patient’s journey, in the context of late diagnosis/referrCare trajectory Basis of treatment decision ChallengesRefused care • Wanting to die at home • Formal and in• Pain control• Forced hospiTraveling for care • Connection to family• Maintaining employment• Access to mesupport for a• Living in hoteRelocating • Safety• Better access• Access to mesupport for a• Access to adethe last few months that they’ve participated in, tryingto accommodate the population to go back to theFirst Nations communities… And no matter what,whether you’re – whether it’s jurisdiction, it’s not somuch argument that we – you know, it’s not anargument of who pays what; it’s trying to worktogether to have the patients safe and to provide whatthat is they need (Provider 020).For some First Nation peoples living in rural and re-mote communities, the prospect of cancer care can getovershadowed by logistical challenges associated with re-locating, navigating the multiple complex but necessaryactivities of city living (transportation, safe housing,affordable food for examples) and managing confusingand at times inconsistent jurisdictional complexities.Providers described how family members often playedan essential role in helping to prepare family membersfor urban experiences, support them through theircare, liaise with the extended family and advocate forthem:And then, they might have one family member thatwill go and stay with them. And oftentimes, they’retaking turns….And most of the time, the families arethe ones that will look at their situations and say,“You know what? I think this – my niece over here:she’s not working. She doesn’t have any children. She’snot – she doesn’t have to worry about other kids ordependents. So she’s probably the best one to comewith me to Winnipeg and stay with me.” So then, thisyoung girl goes and stays with that parent and stayswith them while they’re getting their – and thencommunicates over here with family – what’s goingon. And if the person gets into a stage where they’revery ill or need some support, she’ll be phoning andsaying, “You know, I need you to come here becauseour Mom is not doing well. I need some support”(Provider 001).Taking turns can result in complexities for familymembers, who may have to act as advocates while learn-Maintaining connection with homeand familyrmal home carezation at end stage• Less of an issue until end stageal transportation and financialointmentswhile on chemo• Less of an issue until end stageif terminalal transportation and financialointmentsate accommodations• Isolation from family• Barriers to coming homeing how to navigate a multijurisdictional healthcare sys-tem fraught with complexities and contradictions.Challenges to obtaining timely diagnosesAs indicated in Table 1, all of those who relocated,with the exception of a child with leukemia (Patient005), reported advanced disease state at the time ofdiagnosis, and subsequently died. While some latediagnosis may be related to fear and avoidance, thoseinterviewed for our study related multiple attemptsat seeking care locally to address a health concern(most often recurring pain), until an acute episodeled to an emergency transfer to an urban centre, anda cancer diagnosis.reThloOanadtiohaLavoie et al. BMC Health Services Research  (2016) 16:402 Page 7 of 12ugs for First Nations1 add unnecessary logistical com-exities, stress and may promote non-adherence or afusal to seek care.e lack of attention to peoples’ material circumstances,gistical burden and fatigueur interviews suggest that those who can travel backd forth for care were those initially diagnosed with lessvanced disease. Traveling back and forth was the solu-She used to get sick, she used to come [to the on-reserve health clinic], but they didn’t send her outright away. They tried to treat her – like, gall bladderattack or something like that - bladder infection, kid-ney infection. So she wasn’t properly diagnosed here,till she really got sick. And then they Medicaved[emergency transfer] her out. And then she was in thehospital [for 3 months before dying] (Patient 029).But she came [to the on-reserve nursing station] somany times and they would just say, “Well, that’s justa cyst,” till it became a cancer… (Patient 208).Delays in diagnosis are linked to two policy-relatedfactors: the limited level of care accessible in First Na-tion communities, where a cancer diagnosis is beyondthe scope of services provided; and a federal medicaltransportation policy that will not subsidize transporta-tion for preventive and diagnosis purposes.Some patients may opt to not pursue active cancercare treatment. In some cases, patients may also refuseto pursue palliative care off-reserve, when told that theircancer is too advanced to benefit from acute treatment.Refusal may however occur when acute treatment mightstill be an option. One family member talked about herfather, who refused to relocate, and lived at home withcancer for 5 years (Patient 209). Two rural providers(Providers 052, 502) explained that patients’ rationale fornot pursuing care was often linked to having to leavetheir community for extended periods of time. Providerssuggested that patients were afraid to die away fromhome (as was the case for Patient 209), or to be unableto choose to come home should they want to, becauseof the shortage of housing on-reserve or a lack of finan-cial resource to afford coming home.Our findings suggest that delayed diagnoses related tothe level of care accessible on-reserve and a policy thatdoes not support medical transportation costs associatedwith preventive care result in poorer outcomes, perpetu-ating patients’ view that a cancer diagnosis is invariablyterminal. A fear of a terminal diagnosis may result indelays in seeking care. Federal and provincial disputesover their responsibility for coverage of cancer caredrpln preferred by patients, when possible. Considerablerdship was nevertheless reported, mostly linked withtransportation] van. But he wasn’t really too comfortableriding in there because of his medical condition….Sometimes he would have to get off. One time, he got offin [the next community] – that convenience store there,‘cuz he couldn’t handle the ride (Provider 039).[W]hy are patients driving themselves in withstomach cancer, eating Tylenol because they feel likecrap?” (Provider 025).People also faced significant challenges related tohousing, while receiving outpatient treatment. This wasparticularly problematic for people without family mem-bers living in Winnipeg, who might otherwise offer sup-port with housing or transport. FNIHB provides somesupport to house patients that require care away fromtheir community, for a period of 4 months [26]. FNIHBissues yearly tenders, and contracts directly with localhotels and hostels. Selected bids are related to limitedfederal budgets, resulting in “economical” options:And they pick the crummiest places that I wouldn’t –I couldn’t – you now, something you’re not used to.And for me personally, if I had a choice, I wouldn’tpick the hotels that they have … and there’s a lot ofpanhandlers there and it’s – it wasn’t as clean as Iwanted, for somebody that was terminal (Patient 028).In contrast, patients who did have family members liv-needing to arrange medical transportation (Patient 050,Providers 025, 039), traveling alone long distance whilesick, finding suitable accommodations while receivingtreatment in the city (Patients 028, 059), and findingsupport in the city.One patient reported persistent medical transportation-related challenges associated with attending herappointments:[I]t was coming to the point where I was cancellingmy appointments. Because… like, there was no waygetting there. And sometimes they’d [the federal clerktasked to arrange medical transportation for FirstNation patients] go, “Oh, we don’t have the money.We can’t send you.”. It was, like, more or less choiceswhere I had to send myself and hire people with myown monies kinda thing, just to go to myappointments (Patient 050).When transportation was available, it often involvedhardship for vulnerable patients and family members:Well, we had another patient that used the [medicaling in Winnipeg were better able to make arrangementstailored to their own need.Lavoie et al. BMC Health Services Research  (2016) 16:402 Page 8 of 12Monday. She stayed with family (Provider 059).Although eligibility is at times contested because ofmissing birth certificates, or due to jurisdictional confu-sion (Lavoie et al., 2014), First Nations relocating to anoff-reserve centre for care can access Income Assistancefrom provincial authorities. In one case, while herdaughter was sick and on chemotherapy, a mother calledFNIHB and was told “We cannot provide you transpor-tation anymore because [your daughter is] living in theCity” (Patient 029). So the mother had to buy a car. Thesame person reported what happened to her daughterwhen she attempted to seek Income Assistance: “Andthen we had to drive her – for help at the Welfare officeand she was suffering [with advanced cancer], sittingthere… About 3 h we waited there in line” (Patient 029).As one provider explained:They always have the red tape; it’s what it is. We haveto contact this person, then this person, then thisperson, then this person. And sometimes theinformation is lost in the shuffle. Then you have tostart all over again (Provider 205).The above quotes show that despite a safety net(Income Assistance, medical transportation support,etc.) in place to support First Nations accessing carein the city, accessing these resources is difficult, andthere are considerable limitations to what is provided.Patients and family members emphasized having tobe assertive to receive appropriate care and associatedsupports. Being assertive can however be difficultgiven past and often intergenerational experiences ofdismissal when seeing healthcare services [11, 13].Some of the patients interviewed in this study de-scribed these challenges:[L]ike, with [FNIHB]: I think… they don’t really care…They give you the run-around (Patient 210).She had – she has cancer in the breast. And shejust found out now she’s gonna do radiation. She’llbe in Winnipeg for a month… But she’s – but Itaught her, like, “Speak up.” You know? “Speak up.Don’t be afraid to – to ask for something, even ifyou offend somebody. Just tell them, you know –She just finished her chemo treatments last week, Ithink it was. And she – like, it was for a 5-week period.She… was staying in Winnipeg during that time. Butthen, she – she would get a ride back, like, on a Mon-day to go and do treatment during the week. Then shewould come home on weekends and then go back onjust tell them just what you want.” You know?(Patient 208).Balancing wanting to be home with the need for careOne of the most prevalent issues described by patientsand their families reflected peoples’ fears of dying awayfrom home. In all cases, challenges associated with bal-ancing treatment requirements with family and culturalobligations were mentioned. Being home was connectedto fulfilling cultural obligations (in ceremonies, as amember of an extended family), and being able to main-tain personal and cultural safety (not having to encoun-ter discrimination in everyday activities, not having toworry about the impact of interpersonal or structuralviolence in the city, having family and friends to help).In some cases, the importance of retaining family andcommunity connections resulted in significant compro-mises over care decisions. This was particularly evidentin the context of follow-up after remission, as this pa-tient described.Like, if it were up to me, if I didn’t have grandchildren- like, I wouldn’t wanna take my grandchildren toWinnipeg; now it’s so scary. Like, but if it were up tome, I’d go move back to Winnipeg and I’d stay there.And, like, I’d live there, just knowing, like, the doctorsare there (Patient 050).In this particular case, the choice was between betteraccess to care (the city) and a safe place for grandchil-dren to grow (the reserve).Once it was clear that treatment was not going to re-sult in remission, family members discussed the chal-lenges associated with taking their relative home(Patients 005, 031, 209 and 210). In most cases, care wasprovided by family members and local healthcare staff,until death was imminent and pain control or othersymptoms required medical care.[W]e decided [that I would care for her at home]… Ifyou can control the pain, it’s – it’s okay… So we fixedeverything up at home. We had the bed that can goup and down, the bathroom, a little stool beside thebed. We made it into a little hospital… I got to learnhow to work those oxygen bottles; they’re only goodfor 4 h, and a little machine for her to breathe. We –we pulled it through for about 9 months. And then, 1day she fell down and she said, “I don’t think I’mgonna make it.” She said, “I’m very, very sick.” ‘Cuzshe went right down to her frail bones… I wasn’t madat her; I was mad at myself because this – this cancerthing – it’s terrible for everybody – anybody. Andtook her to the [regional] hospital and 5 days later,she passed on (Patient 005).For others still, coming home was not possible, for avariety of reasons, including the lack of appropriateLavoie et al. BMC Health Services Research  (2016) 16:402 Page 9 of 12clinical support in the home community. These werecomplex decisions, particularly when elderly peoples orelders within the community tried to advocate for theirown relocation home:[S]ometime we got her really mad when we told herwe couldn’t take her because the doctors said. Shesaid, “I’m not married to the doctor” (Patient 209).In some cases, going home for a last visit was acceptedas a compromise.[My daughter]… wanted to come home for the lasttime. She said, “I wanna go home and visit”, youknow? And so, what happened was: I went to thecasino and won $1500 so we paid our fare… So that’swhat she wanted. That was her last wish: to comehome and spend a weekend home. That was about3 weeks before she passed on (Patient 029).DiscussionThe objective of this paper was to critically explore howthe contexts of First Nation peoples’ lives intersect withstructural barriers to shape their access to care and ex-pectations of cancer care. We also wanted to highlightpolicy issues shaping healthcare outcomes. There areseveral strengths and limitations in this study. A keylimitation is that findings reported here are based oninterview data. It was beyond the scope of this paper tolink interview data to chart reviews, through this mayhave provided greater clarity on time lines and patientstrajectories. This work was however not pursued, as wewould have had to secure access to multiple patientcharts (including community file, the FP, regional hospi-tals, Winnipeg-based hospitals). Until integrated elec-tronic medical records are in place, this type of studywill have to depend on interviews alone.Our findings show that logistical fatigue often oc-curred after treatment was initiated. Patient and familymember narratives also reinforced the need to maintainfamily and community connections, are key determi-nants of First Nation decision-making with regard totreatment options, location of treatment and overall ad-herence. Late diagnosis despite repeated consultationsresults in a need for more invasive treatments, availablein Winnipeg only. Some patients chose not to pursueacute cancer care treatment and remain with their lovedones, with the hope to die at home. Others opt for re-location to the city to be closer to care. Still, the majorityof participants and family members interviewed for thispaper commuted to receive care. All participants re-ported logistical fatigue, and many suggested that thisled to compromise in the pursuit of care. The main rea-sons cited for making compromises in adherence relatedto the need to balance family, community and culturalobligations with treatment needs. While some compro-mises are unavoidable, financial pressures, a lack of co-ordination in services offered by different jurisdictions,and a lack of attention to the patient’s circumstances inthe care plan played a key role. In the context of Mani-toba First Nations, a whole system’s approach is requiredto address cancer care needs.Although all Manitobans residing in rural and remoteareas must also relocate for specialized cancer caretreatment [27], the socio-historical and jurisdictionalcontexts influencing First Nation peoples’ access tohealthcare create a unique set of complexities [16, 28–30]. The findings discussed in this paper make visible aparticular set of structural barriers to timely diagnosis,financial barriers to pursue care, factors impacting deci-sions to pursue or interrupt care, and complexities sur-rounding navigating the cancer care system. Thesefindings link to existing policies that at times attempt tomitigate, but often magnify barriers to care.Discourses of consumerism in health care [31],increased self-management, concepts of patient em-powerment and self-efficacy, and health literacy [32] areincreasingly more prevalent in the healthcare literature.Patients and families facing barriers to care are increas-ingly expected to use self-advocacy in their navigation ofthe system. We see a number of issues with these dis-courses and concepts. To begin, being assertive can bedifficult given past and often intergenerational experi-ences of dismissal when seeing healthcare services [11,13, 33]. For Manitoba First Nations, experiences of dis-missal remain very much in the present, with cata-strophic results [34, 35].Patient navigator programs have been shown elsewhereto have a significant positive impact on continuity of carewhere barriers are related to patient’s attempts at navigat-ing an existing and functional system [25]. Patient naviga-tors will likely have limited success in cases where barriersto care are systemic [36], and in this case, related tofederal-provincial wrangling over roles and costs. This isparticularly true where patient navigators are employeesor contactors of the system creating barriers.Sadly, our findings are not unique. A recent review ofcancer incidence in Indigenous peoples in Australia,New Zealand, Canada and the United States reportedthat,The high incidence of certain cancers in indigenous[sic] people fits the pattern of high incidence ofdisease and infection related to social deprivation inlow-income and middle-income countries; our find-ings highlight the common legacy of colonisation andits resultant political, social, environmental, and eco-nomic effects on the health of indigenous people [37].Lavoie et al. BMC Health Services Research  (2016) 16:402 Page 10 of 12In Australia, social exclusion (racial inequity, povertyand related disadvantage) was identified as a key barrierto pursuing care [38]. Although health literacy was alsomentioned as an important factor [39–41], our data sug-gest that what may be construed as a health literacy def-icit (for example, a belief that cancer is a death sentence)may be an accurate reflection of Indigenous peoples’reality given structural barriers. Cultural explanationsshould not overshadow the need for structural change.Conclusions and recommendationsOur findings suggest a number of “missed opportunities”where improved access to early diagnosis, better policyand program alignment and increased responsiveness topatients and family circumstances could result in moremanageable care trajectories for patients and families,reduced logistical fatigue and possibly better outcomes.Enhance access to early diagnostic pathwaysMany patients experienced barriers to early diagnosis,despite repeated attempts at seeking care. These barriersare the results of multiple intersecting factors includingthe lack of availability for screening opportunities inrural, remote and on-reserve communities [21, 27]; pooraccess to a transportation system to seek screening off-reserve [7]; and limiting scope of practice regulations[often understood as a lack of capacity on-reserve, ratherthan restrictive regulations, see 42] which constrain whatservices on-reserve nursing staff can provide. As dis-cussed earlier, health services provided on-reserve arelimited to prevention and public health, delivered bycommunity health nurses and paraprofessionals (Com-munity Health Representatives). Some larger remotecommunities are served by nursing stations, wherenurses working on a broader scope of practice provideselected primary care services.On-reserve facilities do not have the capacity to pro-vide screening and diagnostic services. Access to diag-nostic services located off-reserve requires a referralfrom these nurses or from a visiting FP. Only selectedFirst Nation communities have visiting FPs..FNIHB re-quires a referral to provide support for medical transpor-tation. These factors result in late diagnoses, much moreexpensive treatments, human tragedy, premature mortal-ity and avoidable healthcare costs. Those interviewed re-ported having repeatedly attempted to seek diagnosis,only to be repeatedly dismissed.A key to improving cancer outcomes for First Nationpeoples living on-reserve is to ensure timely access todiagnostic services. This will require a) a partnership be-tween FNIHB and cancer diagnostic services to includescreening on-reserve; b) a change in scope of practicefor nurses working on-reserve; and c) since not all can-cers can be screened for or diagnosed on-reserve, achange in the medical transportation policy to includemedical transportation for diagnostic care.Cross-jurisdictional case managementDespite governmental commitments made to Jordan’sPrinciple, cross-jurisdictional case management remainsunderdeveloped and unsupported by policy for all FirstNation peoples including children [34]. Increasinglystringent accountability frameworks for government pro-grams [13], coupled with dwindling budgets, have cre-ated inflexibilities and diminished opportunities forpatient-centric responses. This trend is a disservice toFirst Nations, and undermines responsiveness and, as aresult, adherence. Recent attention to the JordanPrinciple will hopefully result in progress towards juris-dictional policy coordination, a requirement to improv-ing First Nation peoples access to cancer care.Address the broader context of peoples’ lives andhealthcare needsAlthough the providers we interviewed expressed con-cerns for their First Nation patients, many alsoexpressed powerlessness in making services more readilyaccessible or responsive. Participants reported that theAMC patient navigator and the Winnipeg RegionalHealth Authority social worker programs have been in-valuable in helping them navigate access to health andsocial services, housing, income assistance, and otherservices once in the city. Patient navigation programshave been promoted in Canada [6] and elsewhere [25,43], and the need for this type of patient advocacy hasbeen articulated for decades [44]. Although this is a stepin the right direction, all mentioned that their case loadis too large to be able to provide the level of case man-agement required. As a result, other care providers musttake on the role of advocating for their patients, andwhile some do, it is clear from the interviews discussedin this paper that providers’ level of engagement in ad-vocacy varies, depends largely on the understanding andgoodwill of the provider, and is vulnerable to logisticalfatigue as well as competing demands on time. Althoughresolving cross-jurisdictional issues at the policy level, asdiscussed above, will improve access and might diminishpressures on existing patient navigation programs, thiswill take some time. In the short term, investment in pa-tient navigation programs is required to ensure manage-able caseloads and adequate support.Endnotes1The prescription drug formulary for the NIHB pro-gram is defined nationally, and implemented for all FirstNations no matter where they live. In contrast, allCanadian provinces define their own prescription drugformulary for coverage. Important discrepancies betweenLavoie et al. BMC Health Services Research  (2016) 16:402 Page 11 of 12provinces have been noted especially for cancer drugcoverage [45]. For example, Manitoba Health currentlyprovides free access to cancer drugs for all Manitobaresidents, unless they are First Nations. First Nations areexpected to get their cancer drug coverage from the fed-eral–funded NIHB program. The NIHB formulary how-ever includes only a few cancer drug options, leavingManitoba First Nations with few free treatment optionswhen compared to other Manitobans.AcknowledgementsFunding for this study was provided by the Canadian Institutes of HealthResearch. This study was conducted in partnership with the Assembly ofManitoba Chiefs’ Health & Social Development Secretariat. The authors wantto acknowledge the invaluable contribution of the Chiefs’ Taskforce onHealth, the AMC Manitoba First Nations Health Technicians Network and theManitoba First Nations Social Development Advisors Technical Group.FundingFunding for this study was provided by the Canadian Institutes of HealthResearch (Operating Grant 177279).Availability of data and materialsThe datasets generated during and/or analysed during the current study arenot publicly available, in accordance with the principles of OCAP (http://fnigc.ca/ocap.html) and Chapter 9 of the Canadian Tri-Council Guidelines forResearch Involving the First Nations, Inuit and Métis Peoples of Canada(http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/chapter9-chapitre9/).Authors’ contributionsOriginal concept and research design by JGL, JK, AB, JO, and representativesfrom the Nanaandawewigaming First Nation Health and Social Secretariat ofManitoba. Data collection and analysis by JGL, JK, AB, with input from theNanaandawewigaming First Nation Health and Social Secretariat ofManitoba. Paper drafted by JL, JK and AB. All authors contributed to andapproved the final version of the paper.Competing interestsThe authors declare that they have no competing interests.Consent for publicationNot applicable.Ethics approval and consent to participateEthical approval was received from the Health Research Ethics Board of theUniversity of Manitoba (HS11445-H2009:189). In each First Nation community,a partnership agreement was signed by the research team and thecommunity leadership, detailing the purpose and process of the study. Everyparticipating individual was informed of the study, and provide with theopportunity to consent or refuse to participate.Author details1MFN – Centre for Aboriginal Health Research, University of Manitoba, #715,727 McDermot Avenue, Winnipeg, MB R3P 3E4, Canada. 2Department ofCommunity Health Sciences, University of Manitoba, College of Medicine -University of Manitoba, Room S113 - 750 Bannatyne Avenue, Winnipeg MBR3E 0W3, Canada. 3UBC School of Nursing, T201 2211 Wesbrook Mall,Vancouver, BC V6T 2B5, Canada. 4Faculty of Health Sciences, Simon FraserUniversity, Blusson Hall, Room 11300, 8888 University Drive, Burnaby V5A 1S6,BC, Canada.Received: 14 August 2015 Accepted: 12 August 2016References1. Barkwell D. Cancer pain: voices of the Ojibway people. J Pain SymptomManage. 2005;30(5):454–64.2. Hart-Wasekeesikaw F. First Nation Peoples’ Perspectives and Experienceswith Cancer. Winnipeg, Manitoba: University of Manitoba; 1996.3. Orchard T. 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