Access to medical and supportive care for rural and remote cancer survivors in northern British Columbia.

ORIGINAL ARTICLE

Access to Medical and Supportive Care for Rural and Remote Cancer Survivors in Northern British Columbia A. Fuchsia Howard, RN, MSN, PhD;1 Kirsten Smillie, MA;1 Kristin Turnbull, BHSc;2 Chelan Zirul, MA;3 Dana Munroe, BSc;4 Amanda Ward, PhD;1 Pam Tobin, MA;2 Arminee Kazanjian, DrSoc;1 & Rob Olson, BSc, MD, FRCPC, MSc2,5,6 1 School of Population and Public Health, University of British Columbia, Vancouver, Canada 2 BC Cancer Agency – Centre for the North, Prince George, Canada 3 Geography Program, University of Northern British Columbia, Prince George, Canada 4 BC Cancer Agency – Survivorship Research Centre, Vancouver, Canada 5 Department of Surgery, University of British Columbia, Vancouver, Canada 6 Department of Interdisciplinary Studies, University of Northern British Columbia, Prince George, Canada

Abstract Background: Rural cancer survivors (RCS) potentially have unique mediDisclosures: The authors have no conﬂicts of interest to disclose. Funding: This study was made possible by funding from the Public Health Agency of Canada and the Northern Health Authority. Dr. Fuchsia Howard holds a Michael Smith Foundation for Health Research (MSFHR) Post Doctoral Research Trainee Award. Dr. Robert Olson’s academic time is sponsored by the University of British Columbia’s Northern Medical Program. Acknowledgments: We thank all the survivors who took part in this study and shared their experiences for the beneﬁt of others. For further information, contact: Robert Olson, BC Cancer Agency – Centre for the North, 1215 Lethbridge Street, Prince George, BC, Canada V2M7E9; e-mail: [email protected]. doi: 10.1111/jrh.12064

cal and supportive care experiences when they return to their communities posttreatment because of the availability and accessibility of health services. However, there is a limited understanding of cancer survivorship in rural communities. Purpose: The purpose of this study is to describe RCS experiences accessing medical and supportive care postcancer treatment. Methods: Interviews and focus groups were conducted with 52 RCS residing in northern British Columbia, Canada. The data were analyzed using qualitative content analysis methods. Results: General Population RCS and First Nations RCS experienced challenges accessing timely medical care close to home, resulting in unmet medical needs. Emotional support services were rarely available, and, if they did exist, were difficult to access or not tailored to cancer survivors. Travel and distance were barriers to medical and psychological support and services, not only in terms of the cost of travel, but also the toll this took on family members. Many of the RCS lacked access to trusted and useful information. Financial assistance, for follow-up care and rehabilitation services, was rarely available, as was appropriate employment assistance. Conclusion: Medical and supportive care can be inaccessible, unavailable, and unaffordable for cancer survivors living in rural northern communities.

Key words access to care, cancer, geography, qualitative research, rural health.

Cancer survivors face significant medical and supportive care challenges posttreatment.1 Late physical effects can vary from chronic conditions, such as fatigue and cancer pain, to acute life-threatening side effects of major organ systems.2,3 Challenges related to supportive cancer care include accessing reliable information, coping with the emotional effects of cancer, and accessing psychosocial support.4,5 Providing care that attends to both medical and supportive care needs is a key component of

c 2014 National Rural Health Association The Journal of Rural Health 30 (2014) 311–321

high-quality, patient-centered cancer care.1 Increased research and clinical efforts in survivorship signify a desire to understand the needs of those confronting life after cancer, though limited activity has focused on survivors in rural and remote communities.a,6 The purpose of this study was to describe general population and First Nations rural cancer survivors’ (RCS) experiences accessing medical and supportive care postcancer treatment in northern British Columbia, Canada. This evidence is

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Access Cancer Survivorship Care

foundational to the development of patient-centered health services for rural and remote cancer survivors in the region. Evidence suggests there are significant disparities in cancer survival between urban and rural cancer patients7,8 due, in part, to delays in diagnosis, shortages of health care professionals, high staff turnover, and a larger population with lower socioeconomic status.9,10 Worse outcomes among rural residents may also be secondary to lower adherence to follow-up recommendations, given barriers to accessing services. Most rural cancer patients commute long distances or even relocate to receive treatment, resulting in financial difficulties related to missing work and the high cost of travel.11-13 Those leaving their communities for treatment are removed from their social support systems,14 experience stress and fatigue related to travel, and distress waiting for treatment.13 It is unclear whether these and similar challenges exist posttreatment, when survivors return to their communities. Understanding the needs of cancer survivors living in rural and remote areas is more complex than simply accounting for geographic distance to the nearest urban center. Health system, socioeconomic and cultural factors also must be considered. Aboriginalb communities are faced with a fragmented health care system, a situation compounded by social and economic challenges that impact their health, including their cancer risk.15,16 Social and economic marginalization is even more pronounced for those living in rural and remote areas. First Nations have considered health services to be inaccessible because of conceptualizations of health and disease that are distinct from biomedical approaches,15 and a mistrust of a health care system that is designed from a Western perspective.17

Methods This qualitative analysis is conducted in the context of a mixed-methods study aimed at developing survivorship care plans for rural and remote residents of northern British Columbia (BC), Canada. The Research Ethics Boards of the University of British Columbia, the BC Cancer Agency, and the Northern Health Authority approved this study.

Study Sites: Northern British Columbia, Canada Northern BC represents an area of roughly 231,660 square miles with a sparse population of approximately 300,000.18 The summer is hot and dry, while the winter is characterized by heavy snowfall and short days. The largest employment sector is in natural resources

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(eg, forestry, mining), though Prince George (the regional hub for the northern health authority) has a more diverse economy including a university, college, and business administration. Prince George is the largest urban center with a population of 96,500 and the location of the majority of medical services.19 Another third of the population in northern BC live in smaller towns with populations between 3,000 and 15,000, while the remainder live in small villages and aboriginal reservations. Most of the communities have a medical clinic or are within a few hours of their family care practice. There are general surgeon services in 4 hubs across northern BC, but only Prince George has other specialty care, which can be up to a 15-hour drive from the most remote communities. Most First Nations communities are structured as aboriginal reserves, and community members are typically registered under the Canadian Indian Act as status First Nations. As a result, all aspects of health care are monitored and supported through federally governed Noninsured Health Benefits. However, these communities have substantially fewer resources, and they are more remote from medical services. Several of the communities do not have a physician within a 2-hour drive, are considered rural, remote, or isolated, and are not accessible by road for extended periods of time. Additionally, unemployment rates on reserves are much higher than in the general Canadian population due to limited employment opportunities. Many people seek seasonal work with local industry, such as mining or logging. A full-service cancer center opened in Prince George in 2012, after completion of this research. Before this, cancer patients received treatment services through regional and local hospitals or traveled to cancer centers in other parts of the province. Study participants were recruited from 4 small northern BC communities predominantly composed of general population RCS, and 4 communities predominately composed of First Nations RCS. The 8 communities chosen are either rural, as defined by Statistics Canada, or selfidentify as remote because of their distance from a tertiary hospital. Basic characteristics of these communities are shown in Table 1.

Recruitment and Data Collection: General Population RCS The research team engaged community stakeholders, health professionals, and general population RCS to establish communication and build relationships before commencing recruitment. Study flyers were posted in popular meeting places, including hospitals, community centers, clinics, coffee shops, and libraries. Health professionals also distributed flyers to potential participants.




Table 1 Community Characteristics Rural Communities

Population (2006) Approximate distance (travel time) from regional center GPOsa /RNs a b

First Nations Rural Communities 1

2

3

4

1

2

3b

4b

10,994 252 miles (4 h)

4,064 61 miles (1 h)

5,217 231 miles (4.5 h)

11,320 356 miles (7 h)

170 233 miles (5 h)

250 346 miles (8 h)

5,800 432 miles (9.5 h)

3,030 311 miles (6.5 h)

3/2

2/2

2/2

1/2

0/1 (periodic)

0/1 (periodic)

0/0

0/3

General practitioner with extra training in oncology, including chemotherapy administration. These regions contain multiple First Nations communities, in relatively close proximity to each other.

Individuals were eligible to participate if they were adults, had completed active anti-cancer treatment within the past 60 months (excluding noncytotoxic systemic agents such as hormonal manipulation), and were able to give informed consent to participate. Seven focus groups were conducted across the 4 communities; 2 groups were held in all but 1 community. Focus groups were conducted using a semi-structured interview guide. Topics of discussion ranged from medical review, medical surveillance, adjustment and coping strategies, healthy living guidelines, information availability, and resources. Individuals from each of the 4 communities who wanted to participate, but were unable to attend a focus group, were interviewed individually inperson or by telephone using the same interview guide. In total, 30 general population cancer survivors participated in a focus group and 11 were interviewed. Focus groups lasted approximately 2 hours and interviews up to 1 hour. These were digitally recorded and transcribed verbatim. General population RCS also completed questionnaires that assessed unmet needs, quality of life, anxiety and depression, the results of which will be reported elsewhere.

Recruitment and Data Collection: First Nations RCS Research team members completed an online Indigenous Cultural Competency training program, which was created in response to the Transformative Change Accord First Nations Health Plan requirement to increase cultural competency in British Columbia.20 Research team members with experience working with northern First Nations communities consulted rural or remote First Nations communities to gauge study participation interest. Where it was culturally appropriate, research team members met with the chief, council and community elders. Four communities representing diversity in language, culture, geography, and population size volunteered to participate (Table 1).


Following the advice of the First Nations communities, community research assistants who were well-known and trusted in their respective First Nations community were hired and trained to invite eligible First Nations RCS to participate in the study and to collect the resulting data. First Nations RCS eligibility was similar to general population survivor participants, except that, based on community guidance and in an effort to be culturally sensitive, no posttreatment time was specified. First Nations community members also deemed in-person interviews to be more culturally appropriate than focus groups. In total, 11 of 23 First Nations individuals invited agreed to study participation and were interviewed. These semistructured interviews lasted 30-60 minutes and were digitally recorded and transcribed verbatim. Topics of discussion were identical to those for general population RCS. All participants declined the offer of a translator during the interviews. First Nations RCS also completed questionnaires that assessed unmet needs, quality of life, anxiety and depression, the results of which will be reported elsewhere.

Data Analysis The interview data were analyzed using a directed approach to qualitative content analysis, which is appropriate when prior research about a phenomenon exists but is incomplete or would benefit from further description.21 The goal of a directed approach to qualitative content analysis is to validate or extend prior research, a theoretical framework or theory, and this existing research or theory can help determine the initial coding scheme.21 The research team chose this approach after considering the recent research describing the unmet needs of cancer survivors in general22 and the dearth of evidence pertaining specifically to rural and remote survivors. Campbell et al developed a psychometrically rigorous instrument to measure the unmet needs of adult cancer survivors who are 12- to 60-months postcancer diagnosis, and while this instrument is not a theoretical framework or theory, this

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research does provide a framework for understanding the multidimensional nature of cancer-related needs. Thus, 5 subscales were identified from Campbell et al’s22 unmet needs survey: access and continuity of health care, coping and sharing, emotion, information, and work and financial. Each of the 5 subscales was considered a category and key words related to these categories were identified. Four research team members trained in qualitative methods read the transcripts several times, using these key words to code the transcripts; that is, they identified and grouped relevant passages from the transcripts. Important ideas, events, and experiences common among the general population and First Nations RCS were identified and grouped in each category by the 4 research team members, who then each reviewed all of the data in the grouped and coded format. The research team then met to review and discuss the coding decisions and any discrepancies, which were easily resolved through in-depth discussion and reaching of consensus. At this time, the access and continuity of care category was narrowed to “access to medical care posttreatment,” and the “coping and sharing category” was merged with the emotion category because the data in these categories were so similar. Research team members then crafted descriptions of each category based on the data subsumed in each category. The team then prepared a table that summarized each of the categories along with similarities and differences between general population and First Nations RCS. This table provided the structure for an in-depth discussion wherein the research team compared and contrasted the data within and between RCS, talked through questions arising from this analysis and outlined emerging results. One research team member then collated and summarized the descriptions for each category, which were then reviewed, edited and revised multiple times by each research team member involved in the analysis phase until the most significant and common challenges experienced by general population and First Nations RCS were adequately captured.

Rigor The rigor, or trustworthiness23,24 of the research process was supported by the systematic approach to data collection and analysis and the range of expertise represented within the research team. The credibility of this study, a criterion contributing to trustworthiness, was promoted by developing an early familiarity with the culture of participating communities. This was enhanced by the research team members who were northern BC residents and had in-depth knowledge of the participating communities, the establishment of strong relationships with all participating communities before recruitment,

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Table 2 Participant Characteristics

Age (mean) Female Tumor type Breast Colon or rectal Lymphoma Uterine Other

GP-RCS (N = 41)

FN-RCS (N = 11)

59 83%

50 64%

68% 5% 8% 5% 14%

27% 36% 10% 27% N/A

FN-RCS, First Nations rural cancer survivors; GP-RCS, general population rural cancer survivors.

and the employment of community research assistants in the First Nations communities to recruit participants and collect data. Credibility was further enhanced by providing clear descriptions of the findings with references to representative quotations and experiences from the data. The additional criteria of transferability, dependability, and confirmability, which further promote trustworthiness, were supported by providing background information to establish the context of the study, adequately describing the methodology, developing an audit trail that clearly documented the research team’s decisions, choices and insights during data collection and analysis, and recognizing the study limitations.

Findings Study Participants Forty-one general population RCS participated in total. Thirty took part in a focus group and 11 were interviewed. Eleven of the 23 First Nations RCS, invited to participate, agreed to be interviewed. Participant characteristics are shown in Table 2. There were fewer First Nations participants because the community populations from which they were recruited were smaller than the general population communities.

Challenges Posttreatment Significant challenges of survivorship in rural and remote communities were prominent for all RCS, but there was variation among communities.

General Population RCS Accessing Medical Care Posttreatment Following treatment, the general population RCS encountered difficulties accessing timely medical services close to home, a situation they attributed to physician




shortages, high rates of physician turnover, and profound time constraints on overworked physicians.

edge of the emotional needs of RCS were inaccessible, particularly counseling services.

It’s hard to get things in a very timely manner, because we are in a small community. I wanted to book an appointment with my doctor [for an urgent medical concern]. I couldn’t see them for 3 weeks, and it would kind of tick me off if I had to see somebody else that doesn’t know me the same way. That’s not unusual here.

Anytime I wanted to talk to anybody or ask anybody questions, there was nobody to talk to.

When rural survivors were able to see a physician, many did not have their questions answered or medical needs addressed. They perceived that their medical care suffered because of a lack of coordination and poor communication between health professionals, particularly between physicians in their community and urban specialists. By the time I had actually lost the use of my arm, I was in a lot of pain, and I felt there was a disconnect, like, did they not know what to look for? Should I have called my specialists rather than go see the doctor over here? Moreover, these general population RCS were of the opinion that community health professionals often lacked sufficient cancer-specific knowledge, creating avoidable medical complications, pressure on those who were knowledgeable, and gaps in services. They [community health provider], kind of, didn’t know what to do, they didn’t know what to look for, they didn’t know what the signs [of cancerrelated complications] were. Accessing Psychological Support and Services Posttreatment General population RCS commonly worried about coping at home, feared a recurrence, were anxious about medical problems, and experienced loss of their normal. Coping with emotions was complicated for some general population RCS due to the lack of anonymity and community members’ responses to their cancer. I felt very disfigured when I had this surgery and because this is a small town, everybody knows what happened. Posttreatment was difficult for the general population RCS because they were no longer in contact with the clinicians with whom they had formed close relationships. Moreover, community health professionals with knowl-


Of note, cancer-specific video counseling services from urban centers were available to the communities, though it appears many general population RCS were unaware of this. As such, family members were relied upon or emotional support was obtained from community groups or programs that did not address cancer-specific challenges. They don’t deal with this type of thing either, the counselor at the church. And you get a lot of religious feedback and you know some really good stuff. But it still doesn’t deal with the emotions that are happening when you have got this cloud over your head that says, “Okay, I have cancer. When is it coming back? Is it coming back?” Travel and distance were primary barriers to accessing emotional support and services, not only in terms of the costly nature of the travel but also the effects on family members. By the time you’re done [treatment], I don’t want to go back to [the treatment center] anymore. I don’t, I can’t afford that anymore. There’s more of a cost to it than just the financial cost, right? Again those of us with families, my kids are just little right? So to pack up and go to [the treatment center] for 2 or 3 days is a big deal. So there, there’s a different cost to it than just the financial. General population RCS who attended a support group, cancer-specific or not, generally found great psychological benefits. However, general population RCS commonly did not receive relevant information about available groups.

Accessing Information Posttreatment The general population RCS lacked sufficient information describing the long-term effects of cancer treatment and what to expect posttreatment. The information provided was often too general or did not resonate with the survivors’ experiences. I just find there isn’t enough information about ovarian cancer. It’s all about, “We’re raising money for prostate. We’re raising money for breast.” I feel like I’m in that little spot, pushed to the side that I don’t know anybody else that had the same as I did. I don’t know what I went through, if that’s normal.

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Moreover, information was often not community relevant in that healthy living and rehabilitation recommendations were described that were not available to survivors in rural and remote communities, such as indoor exercise during winter, physiotherapy and prosthetics, which was discouraging to general population RCS. The general population RCS relied on books, the internet, and information packages/pamphlets for information, but they encountered challenges locating reliable, trustworthy, comprehensible, and useful information. The majority used the internet, but they were often overwhelmed by the volume of information that “caused more worry than good,” and led to imagined symptoms. To counter these issues, some survivors only visited professionally vetted websites, while others stopped using the internet. One of the things that I found was really helpful is I had a friend who had gone through it before me and she told me, “Stop reading all this junk because you have no idea what’s good information and what’s poor information. Just stop and trust in your professionals.” Physician-distributed pamphlets and packages that included information about resources, follow-up, and summaries of treatments and complications were considered reliable and useful. Although written information was generally appreciated, many general population RCS felt incapable of comprehending it because they were feeling unwell. This was compounded by the lack of individuals in their community to assist with interpreting information as issues arose posttreatment. I would say that was my biggest barrier . . . was usually because there was something the matter at the time. And so, you’re not thinking clear. And there’s nobody to explain anything to you. Financial and Employment Challenges Posttreatment Many of the general population RCS had invested all the money they could into their care during treatment. Following treatment, cost of travel, rehabilitation, and taking time off work contributed to major financial difficulties. Every time we travel [it costs] a thousand, 2 thousand dollars. That is hard when you’re on a fixed income. This was exacerbated when appointments were rescheduled or canceled by health professionals, who offered no empathy, resulting in frustration and thoughts that the medical system failed them.

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I booked time off work, booked the flights, the hotel; you know everything was ready to go. I got a call 2 days before I went that my appointment had been moved, you know, 3 or 4 days ahead. And I said, “Well you can’t do that.” I said, “I have flights booked and everything.” And they said, “Well unfortunately that’s the way it is.” So I was really angry and I said, “Well OK who pays?” Right? Like who’s going to pay to change all this? However, in a few instances when the general population RCS refused to travel to a follow-up appointment, the medical staff found alternate solutions such as, advising the survivor to see a community physician who then communicated with the urban center specialists. Options were available for economical travel, but not everyone qualified for this benefit. Several general population RCS considered access to prostheses and rehabilitation services crucial to their recovery, but they went without because of the associated costs. The prosthesis itself is costly. Now, mind you, I had a medical plan which would have paid for it, but I would have had to outlay all the money first – And then there’s special bras, there’s the prosthesis – and then there’s the travel. The general population RCS often struggled with feeling guilty about spending large sums on their health. They thought rehabilitation services ought to be covered through the public health system. Returning to work was considered a critical turning point because it signified the return to a more normal routine, yet several survivors did not feel they received adequate paid leave time, they returned to work too soon, and in some cases, they did not have the option to return gradually. With limited employment opportunities in some communities, some felt pressure to return to work because they worried about losing their job, while others needed to re-establish a sufficient income. Other rural survivors were unable to return to the same position, returned to a lower paid position, or had no position to return to at all.

First Nations RCS Accessing Medical Care Posttreatment Following cancer treatment, access to medical services was limited and sporadic in the First Nations RCS communities, resulting in some survivors going without basic follow-up care. Even when medical care was available, timely access was rare. For example, 1 survivor waited 2 weeks in pain for a common opioid analgesic to be flown



in. The First Nations RCS came to believe they could not depend on medical care. And sometimes they [nurse] would show up, or else they would show up too late and then they couldn’t give me the needle. So, it got to the point where I just couldn’t rely on them and I just had to start doing it myself. A number of First Nations RCS faced significant difficulties traveling hundreds of kilometers on dangerous roads, particularly in the winter, to obtain medical care. Some relied on family or friends for transportation since they did not drive or own a vehicle, and resources required for travel, such as fuel, were not always available in the more remote communities. We have to get drivers and that makes a difference, and then you have to be cautious of what driver you get, too. If you don’t have a car then it’s even harder. When I had the car, it was easier because I just had to worry about a driver but there are some people here that don’t have that opportunity or that option of their own car. Travel difficulties resulted in First Nations RCS forgoing follow-up appointments, not complying with followup recommendations, and experiencing medical complications. The First Nations RCS were also frustrated with having to reiterate their medical history continuously to temporary health professionals. Some survivors struggled to recall their medical history or advocate for their care, and as a result opted to forgo recommended follow-up. These survivors also relied on family and friends for language translation, taking notes, and remembering conversations, yet relying on others became difficult over time. The last few times, that was my problem. I haven’t had people there to help listen for me. The first time I went to Vancouver, I had 4 family members in there. One was questioning, one was writing notes and I had 2 extra listening. And that helped tremendously, but then I notice as the appointments went on, I’ve been going in by myself, and sometimes I can’t remember to ask questions, sometimes I just forget. Accessing Psychological Support and Services Posttreatment The First Nations RCS did not speak in great detail about their specific emotional challenges; rather, they focused



on the reasons for their cancer developing. Emotional support services were generally not available and, if they did exist, access was difficult. Only 1 First Nations rural community had a professionally facilitated support group. Emotional support services in languages other than English were not offered, forcing some survivors to rely on family members for translation. These survivors also described the tendency for First Nation individuals to keep emotions to themselves, so as not to appear vulnerable. Nobody talks about cancer up there—they keep it—because they are natives [emphasis on natives], they keep it to themselves. Yet, the First Nations RCS were adamant that culturally appropriate activities and counseling, accessible from their community and open to family members, were essential to putting their cancer journey into perspective. [I would like] To have any kind of activity, such as going bowling once a week. It would be a happy outing for anyone who might be feeling depressed. Or survivors could have a little get-together over tea. Talk about our problems together. That would ease the worry and how much we wonder what’s happening to us. [I would like] More people who went through the process to talk to our younger generation about it and then talk to everybody about the stages and how you go through it and what the whole process is of going through chemo and stuff. Because a lot of people just go in blinded. Sharing each other’s stories can help survivors to benefit from each others’ learning. Accessing Information Posttreatment The First Nations RCS considered lifestyle information essential for recovering after treatment. Yet, most did not have timely access to a dietician in their community, and provided information was inadequate because it did not consider seasonality or facilities in their community. For example, after receiving information and advice to exercise by walking, 1 survivor “tried to do that but now, its wintertime,” and she could no longer walk outside. These survivors also wanted to know how to obtain supportive care resources and services but, despite requests, found this unobtainable. There was absolutely no support. No information of where I could get help or any kind of information that I might’ve wanted. There was no one to ask.

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The First Nations RCS experienced significant barriers obtaining written information. The internet connection was unreliable in some communities and connecting to the internet and/or purchasing a computer was too costly for others. For example, 1 survivor was unable to go online because the community internet was provided through a satellite and his house was located too far from the satellite to receive the signal. When survivors did access the internet, many were overwhelmed by the information. The internet was really, it just keeps going on and on and on. You’ll never finish it, there’s so much information out there. And I couldn’t understand what it was saying half the time. The only written information many First Nations RCS received was treatment-focused pamphlets and books. When written information was available, the survivors encountered difficulties comprehending dense information, particularly when literacy was an issue and was compounded by fatigue and “chemobrain.” She gave me this wonderful book on food to prevent cancer. But it’s quite a book to read, to sit and start reading something like that . . . And some of our people up here may not be able to read that information. For many First Nations RCS, verbal information was more appropriate than written: “When someone is talking, I can absorb it better.” In-person assistance to retrieve and review written information was greatly valued. When health professionals took the time to explain information, the survivors felt respected and supported. Verbal information and opportunities to talk to other cancer survivors were also appreciated. Financial and Employment Challenges Posttreatment Travel from First Nations RCS communities to follow-up appointments was expensive because of costs associated with travel itself, accommodation, food, and companions, which were necessary for emotional support and language translation. Yet, First Nations survivors commonly commented that, “there is no money for those kinds of things.” The majority had difficulty obtaining financial assistance or maneuvering through the politics of obtaining government funding. [The] Band haven’t really helped me. They did for the weekend once when I first came to [urban center], but they never paid nothing into my health. They’ve never helped me money wise.

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We got there [urban center for follow-up appointment] and we got our own room because [band] health wouldn’t cover it because they said I should have waited until the community clinic was available to take me. I just went to [the urban center] anyways and covered the cost myself. The rescheduling of medical appointments was expensive for First Nations RCS because they were forced to make alternate travel arrangements and pay for lastminute transportation. Those who could not afford to travel or faced exceptional barriers had to wait for important test results or missed their follow-up appointments altogether. To save money, others underwent medical procedures in their community, resulting in complications, physical and emotional discomfort, and uncertainty about the abilities of medical staff. I was trying to save money by not going to Prince George, and time. I was the first one and they didn’t know how to handle me. And that was why I had to have a second surgery, because all that pain I was experiencing. No one knew that it wasn’t normal.

Discussion Our findings indicate that general population and First Nations RCS face expected and unexpected challenges accessing medical and supportive care and services postcancer treatment, and that there were differences between general population rural and First Nations rural communities’ access to follow-up care. We expected RCS would have the obvious issues accessing follow-up care far from home, and that there would be an associated financial barrier. Yet, surprisingly these considerations were not reflected in an organized care plan for RCS. Notably, general population RCS perceived health care provision as unreliable, and they recognized a knowledge gap among local health care teams. The financial strain of travel and unemployment were unaddressed by health and social services, and access to basic rehabilitation was limited as a result of cost. Finally, our general population RCS participants noted a desire for community-relevant information, which was not provided. We expected First Nations RCS, whose communities are more remote, to have cultural and language barriers to care, as well as challenges with access and finances to receiving care. Surprisingly, however, these challenges were often not addressed through existing health and social programs. Follow-up care was rarely provided, as well as being cost-prohibitive, unreliable, and unsupported for First Nations RCS community members. There was an unmet desire for emotional support, and relevant,



comprehensible information. The First Nations RCS expressed a desire for one-on-one discussions, and they thought their care would be improved if health professionals visited their communities to gain an appreciation for rural and remote living. This study adds to the literature highlighting the need for medical and psychosocial care following cancer treatment,4 and it also suggests that RCS face additional challenges. The lack of access to timely medical care resulted in frustrations, but also medical complications and compromised health. Prior research has identified the costs rural and remote cancer patients incur to be a barrier to treatment.7,13,25 Our research suggests that this financial burden continues for RCS long after treatment, preventing survivors from obtaining health care. These issues were not simply the consequence of living far from services, but they were also related to health care system inadequacies (eg, communication and coordination), suggesting that changes to how northern cancer survivor services are delivered are warranted. The RCS described emotional challenges for which they received minimal support. Informal support structures that exist in rural communities can provide significant support.26,27 Yet accessible professional and peer support was still desired among both the general population and First Nations RCS. Such services will need to be available to achieve patient-centered care. As mentioned previously, a full-service cancer center was opened in Prince George after the study period. Preliminary results from this study have already influenced the creation of an aboriginal care navigator position within the new center, which is a first within the BC Cancer Agency. As a result, we anticipate that some of the unmet needs and frustrations experienced by First Nations survivors and described in this study will dissipate. We are currently planning to evaluate the effectiveness of this Aboriginal Care Navigator. It is also possible that the new cancer center will improve the coordination of cancer care services and resources because two-thirds of the patients who are referred to the center live in the rural and remote communities surrounding Prince George, and the staff will be accustomed to coordinating appointments and offering support to these patients. This research is in line with Australian research wherein “Indigenous-specific” cancer services were lacking, language barriers and failure to establish ongoing relationships impeded services access,25,28,29 and rural cancer patients wanted comprehensive information accompanied by interpretation assistance.13 The provision of pamphlets is an efficient means of delivering information, but both the general population and First Nations RCS in this study wanted to discuss information with a professional as challenges arose. We propose that access



to health professionals remotely would help meet this need and improve trust of the health care system. In addition, awareness of existing services (eg, tele-counseling services) needs to be raised. While rural location influenced the level of access to and provision of cancer survivor services for the survivors in this study, other factors of community economy, socioeconomic disadvantage, reliance on family and transportation conditions also appeared influential. This aligns with recent evidence that rural health disparities, including among cancer patients and survivors, cannot be attributed to 1 or 2 single factors, but rather, rurality may exacerbate the effects of socioeconomic disadvantage, culture, poorer service availability, higher levels of personal risk, and more difficult environmental, occupational and transportation conditions.30,31 As such, focusing solely on “area-based” explanations and solutions to rural health problems in cancer care may divert attention from more fundamental social and structural processes operating in the broader context—to the detriment of health policy development and service re-structuring.30 This research has practical implications. First, this research suggests that health care systems should implement systems to identify and flag these vulnerable populations. This could allow for tailoring follow-up schedules (eg, coordinate appointments), recommending existing remote health care assistance (eg, telecounseling services), and providing navigator services when appropriate, including Aboriginal-specific navigators. Second, providing financial support may improve adherence to recommended follow-up, though remote health care assistance may be more cost-efficient, when appropriate. Third, RCS sought access to health providers more experienced with cancer; though they sought in-person discussion, remote assistance would likely be more feasible and cost-effective. Opening access to additional health professionals other than oncologists, such as family physicians and nurses with oncology expertise, might help meet unmet needs identified in this research. This study must be considered in the context of its strengths and limitations. All participants were recruited in northern BC, and therefore, our findings may not be generalizable outside this setting. However, there are likely many similarities between these varied communities and other Aboriginal, Native American Indian, rural and remote communities in North America. Second, volunteer bias is likely, with the perspectives of survivors with fewer or more challenges likely being underrepresented. However, the deliberate inclusion of the understudied rural, remote, and First Nations communities provides valuable information, and highlights the need to adapt survivorship services to these populations. Third, while we were hearing repetitive information and no

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longer obtaining new insights from the last interviews with the First Nations participants, interviews with 1 to 3 additional First Nations would have been necessary to be absolutely certain we reached data saturation. However, there were no additional First Nations survivors to recruit into the study because we invited all eligible cancer survivors from the 4 participating First Nations communities. Fourth, in the directed approach to qualitative research, researchers already have an informed but, nonetheless, strong bias because the analysis is based on the previous research, making it more likely that evidence was found that is consistent, rather than inconsistent, with existing research.21 That is, the findings of this research are likely to be in line with, and potentially supportive of, Campbell et al’s conceptualization of cancer survivors’ unmet needs, leaving open the possibility that important challenges related to accessing medical and supportive care and services postcancer treatment remain unexplored. Finally, study participants did describe positive aspects of residing in their rural and remote communities that are not reported here, and therefore, it should not be assumed that RCS face only challenges.

Conclusion Medical and supportive care postcancer treatment can be fragmented, unavailable and unaffordable for survivors living in rural northern BC communities. The challenges facing these survivors warrant further investigation, but also attention at the health provider and health system levels to promote optimal health outcomes.

Notes a Rural and remote communities in northern British Columbia refer to communities with a population of fewer than 10,000 people and are inclusive of First Nations communities. b ´ The term Aboriginal is inclusive of First Nations, Metis and Inuit populations of Canada. These terms are used interchangeably throughout this paper.

References 1. Hewitt ME, Greenfield S, Stovall E. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academy Press; 2006. 2. Ganz PA. Monitoring the physical health of cancer survivors: a survivorship-focused medical history. J Clinic Oncol. 2006;24:5105-5111. 3. Aziz NM. Cancer survivorship research: state of knowledge, challenges and opportunities. Acta Oncol. 2007;46:417-432.

320


4. Stanton AL. What happens now? Psychosocial care for cancer survivors after medical treatment completion. J Clinic Oncol. 2012;30:1215-1220. 5. Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer. 2009;17:1117-1128. 6. Harrison SE, Watson EK, Ward AM, et al. Primary health and supportive care needs of long-term cancer survivors: a questionnaire survey. J Clinic Oncol. 2011;29:2091-2098. 7. Butow PN, Phillips F, Schweder J, White K, Underhill C, Goldstein D. Psychosocial well-being and supportive care needs of cancer patients living in urban and rural/regional areas: a systematic review. Support Care Cancer. 2012;20:1-22. 8. Olson RA, Nichol A, Caron NR, et al. Effect of community population size on breast cancer screening, stage distribution, treatment use and outcomes. Canadian J Public Health. 2011;103:46-52. 9. Jong KE, Vale PJ, Armstrong BK. Rural inequalities in cancer care and outcome. Med J Aust. 2005;182:13-14. 10. Jiwa M, Halkett G, Aoun S, et al. Factors influencing the speed of cancer diagnosis in rural western Australia: a general practice perspective. BMC Family Practice. 2007;8:27. 11. Hegney D, Pearce S, Rogers-Clark C, Martin-McDonald K, Buikstra E. Close, but still too far. The experience of Australian people with cancer commuting from a regional to a capital city for radiotherapy treatment. Eur J Cancer Care. 2005;14:75-82. 12. Zucca A, Boyes A, Newling G, Hall A, Girgis A. Travelling all over the countryside: travel-related burden and financial difficulties reported by cancer patients in New South Wales and Victoria. Aust J Rural Health. 2011;19:298-305. 13. Wilkes LM, White K, Mohan S, Beale B. Accessing metropolitan cancer care services. J Psychosoc Oncol. 2006;24:85-101. 14. White K, Roydhouse J, D’Abrew N, Katris P, O’Connor M, Emery L. Unmet psychological and practical needs of patients with cancer in rural and remote areas of Western Australia. Rural Remote Health. 2011;11:1784. 15. Brown HJ, McPherson G, Peterson R, Newman V, Cranmer B. Our Land, Our Language: Connecting Dispossession and Health Equity in an Indigenous Context. Canadian J Nurs Res. 2012;44:44-63. 16. Marrett L, Jones C, Wishart K. First Nations Cancer Research and Surveillance Priorities for Canada: Workshop Report. Ottawa: Cancer Care Ontario; 2003. 17. Castleden H, Crooks VA, Hanlon N, Schuurman N. Providers’ perceptions of aboriginal palliative care in British Columbia’s rural interior. Health Social Care Community. 2010;18:483-491. 18. Northern Health Authority. About Northern Health. Available at: http://www.northernhealth.ca/AboutUs. aspx. Accessed July, 2013.



19. Northern Health Authority. Prince George: A Primary Health Care Approach. Available at: https://northernhealth.ca/Portals/0/Your˙Health/Primary %20Health%20Care/Community%20storyboards/Prince %20George%20PHC%20storyboard%20--%20Feb% 2025,%202011.pdf. Accessed July, 2013. 20. Provincial Health Services Authority. Indigenous Cultural Competency Online Training Program. Available at: http://www.phsa.ca/AgenciesAndServices/Services/ AboriginalHealth/Services/default.htm. Accessed September 1, 2012. 21. Hsieh H, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277-1288. 22. Campbell HS, Sanson-Fisher R, Turner D, Hayward L, Wang XS, Taylor-Brown J. Psychometric properties of cancer survivors’ unmet needs survey. Support Care Cancer. 2011;19:221-230. 23. Morse JM, Field PA. Qualtiative Research Methods for Health Professionals. 2nd ed. Thousand Oaks, CA: Sage; 1995. 24. Shenton AK. Strategies for ensuring trustworthiness in qualitative research projects. Educ Inf. 2004;22:63-75. 25. Whop L, Garvey G, Lokuge K, et al. Cancer support services–are they appropriate and accessible for Indigenous cancer patients in Queensland, Australia. Rural Remote Health. 2012;12:2018.



26. McGrath P, Patterson C, Yates P, Treloar S, Oldenburg B, Loos C. A study of postdiagnosis breast cancer concerns for women living in rural and remote Queensland. Part II: support issues. Aust J Rural Health. 2002;7:43-52. 27. Mcgrath P, Patterson C, Yates P, Treloar S, Oldenburg B, Loos C. A study of postdiagnosis breast cancer concerns for women living in rural and remote Queensland. Part I: personal concerns. Aust J Rural Health. 2002;7:34-42. 28. Shahid S, Finn L, Thompson SC. Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting. Med J Aust. 2009;190:574-579. 29. Shahid S, Finn L, Bessarab D, Thompson SC. Understanding, beliefs and perspectives of aboriginal people in Western Australia about cancer and its impact on access to cancer services. BMC Health Serv Res. 2009;9:132. 30. Smith KB, Humphreys JS, Wilson MG. Addressing the health disadvantage of rural populations: how does epidemiological evidence inform rural health policies and research? Aust J Rural Health. 2008;16:56-66. 31. Thomas TL, DiClemente R, Snell S. Overcoming the triad of rural health disparities: how local culture, lack of economic opportunity, and geographic location instigate health disparities. Health Educ J. [Epub ahead of print February 24, 2013]. doi: 10.1177/0017896912471049.

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Opportunities and Barriers to Rural, Remote and First Nation Health Services Research in Canada: Comparing Access to Administrative Claims Data in Manitoba and British Columbia.

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Successful provision of emergency mental health care to rural and remote New South Wales: an evaluation of the Mental Health Emergency Care-Rural Access Program.