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Patient experience studies in the circumpolar region: a scoping review

Journal: BMJ Open ManuscriptFor ID peerbmjopen-2020-042973 review only Article Type: Original research

Date Submitted by the 21-Jul-2020 Author:

Complete List of Authors: Ingemann, Christine; University of Southern Denmark Faculty of Health Sciences, National Institute of Public Health; University of Greenland, Institute of Nursing and Health Sciences Hansen, Nathaniel; Tufts University School of Medicine Hansen, Nanna; University of Southern Denmark Faculty of Health Sciences, National Institute of Public Health Jensen, Kennedy; Dartmouth College Geisel School of Medicine, Larsen, Christina; University of Southern Denmark Faculty of Health Sciences, National Institute of Public Health Chatwood, Susan; University of Alberta School of Public Health

Quality in health care < HEALTH SERVICES ADMINISTRATION & Keywords: MANAGEMENT, PUBLIC HEALTH, QUALITATIVE RESEARCH, PRIMARY CARE http://bmjopen.bmj.com/

on October 1, 2021 by guest. Protected copyright.

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4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 7 8 9 I, the Submitting Author has the right to grant and does grant on behalf of all authors of the Work (as defined 10 in the below author licence), an exclusive licence and/or a non-exclusive licence for contributions from authors 11 who are: i) UK Crown employees; ii) where BMJ has agreed a CC-BY licence shall apply, and/or iii) in accordance 12 with the terms applicable for US Federal Government officers or employees acting as part of their official 13 duties; on a worldwide, perpetual, irrevocable, royalty-free basis to BMJ Publishing Group Ltd (“BMJ”) its 14 licensees and where the relevant Journal is co-owned by BMJ to the co-owners of the Journal, to publish the 15 Work in this journal and any other BMJ products and to exploit all rights, as set out in our licence. 16 17 The Submitting Author accepts and understands that any supply made under these terms is made by BMJ to 18 the Submitting Author Forunless you peer are acting as review an employee on behalf only of your employer or a postgraduate 19 student of an affiliated institution which is paying any applicable article publishing charge (“APC”) for Open 20 Access articles. Where the Submitting Author wishes to make the Work available on an Open Access basis (and 21 intends to pay the relevant APC), the terms of reuse of such Open Access shall be governed by a Creative 22 Commons licence – details of these licences and which Creative Commons licence will apply to this Work are set 23 out in our licence referred to above. 24 25 Other than as permitted in any relevant BMJ Author’s Self Archiving Policies, I confirm this Work has not been 26 accepted for publication elsewhere, is not being considered for publication elsewhere and does not duplicate 27 material already published. I confirm all authors consent to publication of this Work and authorise the granting 28 of this licence. 29 30 31 32 33 34 35 36 37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44 45 on October 1, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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1 2 3 1 Patient experience studies in the circumpolar region: a scoping review

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 2 Christine Ingemann*, Centre for Public Health in Greenland, National Institute of Public 7 3 Health, University of Southern Denmark, Studiestræde 6, 1455 Copenhagen, Denmark; 8 4 Greenland Centre for Health Research, Institute of Nursing and Health Research, 9 10 5 Ilisimatusarfik – University of Greenland, Nuuk, Greenland; [email protected]; 11 6 +4565507822; ORCID: 0000-0002-1390-4952 12 7 13 14 8 Nathaniel Fox Hansen*, Tufts University School of Medicine, Boston, Massachusetts, 15 9 United States; ORCID: 0000-0002-3368-9938 16 10 17 18 11 Nanna Lund Hansen,For Centre peer for Public review Health in Greenland, only National Institute of Public 19 12 Health, University of Southern Denmark, Copenhagen, Denmark 20 13 21 22 14 Kennedy Jensen, Geisel School of Medicine at Dartmouth, Hanover, New Hampshire, 23 15 United States 24 16 25 26 17 Christina Viskum Lytken Larsen, Centre for Public Health in Greenland, National 27 18 Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark; 28 19 Greenland Centre for Health Research, Institute of Nursing and Health Research, 29 30 20 Ilisimatusarfik – University of Greenland, Nuuk, Greenland; ORCID: 0000-0002-6245- 31 21 4222 32 22 33 23 Susan Chatwood, University of Alberta, School of Public Health, Edmonton, 34 35 24 Yellowknife, Canada; 36 25 37 26 *corresponding authors http://bmjopen.bmj.com/ 38 39 27 Christine Ingemann ([email protected]) and Nathaniel Fox Hansen 40 28 ([email protected]) contributed equally to this paper. 41 29 42 43 30 Word count: 4,588 44 31 45 on October 1, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 1

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1 2 3 33 Patient experience studies in the circumpolar region: a scoping review

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 34 7 8 35 KEYWORDS 9 10 36 patient experience, patient satisfaction, circumpolar, arctic, scoping review, Indigenous, 11 12 37 rural healthcare, telehealth 13 14 38 15 16 39 ABSTRACT 17 18 40 Objective: PatientFor experiences peer of healthcare review and health systemsonly constitute a crucial pillar 19 20 41 of wellness and the quality of care itself. Across the Arctic, patients’ interactions with the 21 22 42 healthcare system are colored by challenges of access, historical inequities, and social 23 24 43 determinants. Though it is well understood that these challenges affect care outcomes, 25 44 prior research across the Arctic has explored patient experiences only inconsistently, with 26 27 45 isolated research efforts that address various components of the care experience. The aim 28 29 46 of this scoping review was to identify and describe peer-reviewed literature on patient 30 47 experience studies conducted within the circumpolar region. Our objective was to 31 32 48 determine the extent, range and nature of studies conducted, and to summarize and 33 34 49 disseminate findings relevant to patient experiences. 35 36 50 Design: In an international partnership between Danish/Greenlandic, Canadian, and 37 http://bmjopen.bmj.com/ 38 51 American research teams, a scoping review of published research exploring patient 39 40 52 experiences in circumpolar regions was undertaken. 41 42 53 Results: Of the 2,824 articles initially found through systematic searches in seven 43 44 54 databases, 96 articles were included for data extraction. Findings from the review 45 55 included unique features related to Indigenous values, rural and remote health, climate on October 1, 2021 by guest. Protected copyright. 46 47 56 change, and telehealth. 48 49 57 Discussion: The review findings provide an overview of patient experiences measures 50 51 58 currently used in circumpolar nations. These findings may be used to guide future studies 52 53 59 of patient experiences. These findings could be complimented by consensus and 54 60 participatory approaches that would build on Indigenous values present in circumpolar 55 56 61 nations, and further inform how we understand patient experiences. These findings can 57 58 62 be used to inform health system improvement and guide health policy decisions that will 59 60 2

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1 2 3 63 respond to patient needs in the circumpolar context and other nations who share common

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 64 features related to Indigenous values, rural and remote context, and climate change 6 7 65 impacts. 8 9 66 10 11 67 ARTICLE SUMMARY 12 13 68 Strengths and limitations of this study 14 15 69  This scoping review represents the most comprehensive and detailed examination of 16 17 70 existing literature on patient experiences in the circumpolar region. 18 For peer review only 19 71  Our focus on four core features of circumpolar-specific patient experiences 20 21 72 (Indigenous values, rural and remote, climate change, and telehealth) provides a clear 22 73 view of experience domains relevant to circumpolar populations, while allowing 23 24 74 bottom-up synthesis of themes. 25 26 75  A potential limitation of this study was that no external framework was used to guide 27 28 76 data analysis, which limits the ability of these findings to dialog directly with research 29 30 77 in this field. 31 32 78 33 34 79 INTRODUCTION 35 36 37 80 A growing body of research exploring patient experiences of care reveals that such http://bmjopen.bmj.com/ 38 81 measures not only capture level of satisfaction with care but also correlate with important 39 40 82 metrics including clinical outcomes and patient safety.1 Targeted attempts to improve 41 2 42 83 patient experiences have led to quantitative improvements in health outcomes. 43 84 Additionally, positive patient experiences have been linked to high satisfaction among 44 45 3 85 medical teams - a critical factor in the prevention of burnout and workforce attrition. on October 1, 2021 by guest. Protected copyright. 46 47 86 The experiences of patients in health systems can be reflective of the challenges and 48 49 87 privileges they experience in daily life. Racial and ethnic minorities, as well as rural and 50 51 88 low-income populations continue to experience suboptimal health outcomes, due in part 52 53 89 to the effect of institutionalized racism and structural poverty on their ability to access 54 90 and receive quality healthcare.4 55 56 91 Residents of the circumpolar north face these challenges as well, and while some northern 57 58 92 populations compare favourably with the respective national average in terms of mortality 59 60 3

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1 2 3 93 rate for conditions such as diabetes, the relatively high rates of other conditions including

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 94 heart disease and self-inflicted injury indicate significant disparities in health promotion 6 5 7 95 and utilization in the circumpolar north. Furthermore, the unique characteristics of the 8 96 circumpolar region make the provision of quality healthcare especially challenging. Huot, 9 10 97 et al. 6 previously identified four themes that were unique to access to care in northern 11 12 98 health systems: influence of physical geography, provider-related barriers, culture and 13 14 99 language, and the impact of systemic factors such as lack of funding. 15 16 100 A number of studies address similar themes, including one study of Sami patients in the 17 101 Norwegian healthcare system that found a culturally unsafe environment and lack of 18 For peer review only 19 102 interpreting services to be associated with patients receiving unequal access to health 20 21 103 information.7 Additionally, a study involving First Nations, Inuit, and Métis participants 22 23 104 in Canada showed how the legacy of colonialism as well as contemporary exposures to 24 105 culturally unsafe care impacted how engaged patients felt with their diabetes 25 26 106 management.8 27 28 107 The circumpolar region is home to many Indigenous populations, where the unique 29 30 108 historical, environmental, and cultural dynamics contribute to the complexity of system- 31 32 109 wide evaluation of patient experiences in the region. The predominant approaches to 33 34 110 health system evaluation are rooted in a biomedical conception of health, though other 35 111 approaches, such as postcolonial and traditional knowledge ideologies are beginning to 36 37 112 become incorporated into mainstream health systems analysis.9-12 http://bmjopen.bmj.com/ 38 39 113 Another defining feature of the circumpolar world is its sparse population distribution 40 41 114 and the predominance of communities situated in remote areas. This presents challenges 42 43 115 to the provision of safe and accessible healthcare. One study of rheumatoid arthritis 44 116 patients in rural Canada found that travel distance as well as severe weather affecting 45 on October 1, 2021 by guest. Protected copyright. 46 117 travel negatively impacted their healthcare experience.13 However, the challenge of 47 48 118 geographic remoteness also stimulates innovation; circumpolar areas are renowned for 49 14 50 119 their pioneering implementation of telehealth technologies. Expanding use of telehealth 51 120 for services such as chronic disease management15 and diagnostic imaging16 holds the 52 53 121 potential for transformative health system changes, but it also brings with it novel barriers 54 55 122 to the assessment of patient experiences. The increasing reliance on telehealth in 56 123 circumpolar regions necessitates a review of patient experiences using these technologies. 57 58 59 60 4

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1 2 3 124 The aim of this scoping review was to describe patient experience studies conducted

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 125 within the circumpolar region, with the goal of elucidating factors that influence patient 6 7 126 perceptions and utilization of health services. 8 9 127 10 11 128 METHODS 12 13 129 A scoping review with a thorough systematic search and screening process was 14 15 130 conducted. Our methodology was informed by the scoping methods devised by Arksey 16 17 17 131 and O'Malley and as such, our goal was to provide a broad overview of the extent and 18 132 range of literatureFor relevant peer to patient reviewexperiences in circumpolar only populations. Scoping 19 20 133 reviews have been successfully used to better understand health topics in circumpolar 21 22 134 regions.18-20 Our work does not assess the quality of included articles, but aims to provide 23 24 135 a preliminary picture of what has been published across Arctic regions with shared 25 136 experiences. In this review, analysis was conducted across dimensions of patient 26 27 137 experiences related to the shared features of Indigenous values, rural and remote 28 29 138 geography, climate change, and telehealth, as these categories are of particular 30 31 139 importance to circumpolar health systems given the specific challenges and 32 140 characteristics of the circumpolar region. Publications that did not address these 33 34 141 categories were still included. This allowed for broad capture of relevant publications and 35 36 142 bottom-up synthesis of themes. 37 http://bmjopen.bmj.com/ 38 143 39 40 144 Focus population 41 42 145 The focus population of the review was the population living in the circumpolar region, 43 21 44 146 which is home to many Indigenous populations. The circumpolar region was defined 45 147 geographically by definitions used in an international circumpolar health systems on October 1, 2021 by guest. Protected copyright. 46 47 148 comparison.14 Additional regions considered circumpolar were made based on 48 22 49 149 Indigenous regions represented through international forums such as the Arctic Council. 50 150 A circumpolar health sciences librarian made some alterations to the boundaries used for 51 52 151 circumpolar geography in the search (see figure 1). 53 54 152 55 56 57 153 Figure 1. Map of the circumpolar North and its regions. Map by Winfried Dallmann, 58 154 Norwegian Polar Centre. 59 60 5

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1 2 3 155

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 156 Search strategy 6 7 157 Preliminary searches were conducted by both the American/Canadian team and the 8 9 158 Danish/Greenlandic team, before combining search terms and refining them in 10 11 159 collaboration with the librarians. This lead to a comprehensive search syntax based on 12 160 the two key concepts, namely ‘patient experience’ (searched in ‘all fields’) and 13 14 161 ‘circumpolar region/population’ (searched in ‘title, abstract, and keywords’). The full 15 16 162 search strings are available in supplements. 17 18 163 Searches in sevenFor electronic peer databases reviewwere conducted ononly March 27th, 2019: MEDLINE, 19 20 164 EMBASE, Scopus, “Global Health 1910 to 2019 Week 11”, CINAHL, PsychInfo, and 21 165 SveMed+. Only in the database SveMed+ a small adjustment of the search string was 22 23 166 necessary to be applied in the search machine. The search had no limited timeframe. 24 25 167 26 27 28 168 Screening and selection process 29 169 The search result of the databases was imported to the online review program 30 31 170 Covidence,23 where duplicates were screened and excluded by the program and an 32 33 171 additional hand-search for duplicates was performed. The whole screening process of the 34 172 review was conducted in Covidence by four researchers under the supervision of two 35 36 173 senior advisors. 37 http://bmjopen.bmj.com/ 38 174 Eligibility criteria were developed for the title and abstract screening, and the refined for 39 40 175 the full-text screening. In the title and abstract screening, articles were eligible if: 41 42 176 (a) Study participants included northern or Indigenous populations. 43 44 45 177 (b) Studies reported the patient perspective. on October 1, 2021 by guest. Protected copyright. 46 47 178 (c) Studies on all areas of patient experiences in the healthcare system from a specific 48 179 illness to health promotion activities, excluding perceptions of health research and 49 50 180 specific treatment outcome. 51 52 181 For the full text screening criteria were made more explicit, and articles were excluded 53 54 182 if: 55 56 183 (a) The study did not take place in the circumpolar region or focus specifically on 57 58 184 care experience of circumpolar population 59 60 6

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1 2 3 185 (b) Less than 5% of study participants were from the circumpolar region.

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 186 (c) Patient experience pertained to outcome rather than care experience. 6 7 8 187 (d) The study failed to directly measure patient experiences. 9 10 188 In the full-text screening, the full-text of 10 articles were not accessible, and original 11 12 189 authors and journals could not be reached, therefore these articles were excluded. 13 14 190 Extracted data included bibliometric information, study design, method, location, reason 15 16 191 for seeking treatment, general themes from each article, and whether or not the article had 17 192 a focus in Indigenous values, or rural and remote geography, climate change, and 18 For peer review only 19 193 telehealth. These latter categories were selected because of their special relevance to the 20 21 194 health experiences of circumpolar populations. Two independent libriarians conducted an 22 195 external validation of the literature search. Each article was reviewed at every stage of 23 24 196 screening by two of the four reviewers. Extracted information to the Excel sheet was also 25 26 197 reviewed by a second person in the review team. The screening and selection process are 27 28 198 visualized in the prisma diagram in figure 2. 29 30 199 31 32 200 Figure 2. Prisma of the screening process. 33 34 201 35 36 37 202 RESULTS http://bmjopen.bmj.com/ 38 39 203 Bibliometric results 40 204 A total of 96 peer-reviewed articles were identified. The oldest study on patient 41 42 205 perspectives and experiences included in this review dates back to 1989. The number of 43 44 206 patient experience studies roughly doubled each decade thereafter (table 1). Three 45 on October 1, 2021 by guest. Protected copyright. 46 207 quarters of the studies took place in Iceland (n=24), Norway (n=24), and Sweden (n=22). 47 208 19 studies were from North America; Canada (n=10) and Alaska (USA) (n=9). Five or 48 49 209 less studies took place in Finland (n=5), Greenland (n=4), Russia (n=3), and the Faroe 50 51 210 Islands (n=1). Three articles included study results from more than one country. Half of 52 211 the identified studies applied a quantitative research design with surveys as their only data 53 54 212 collection method (n=47). 40 articles applied a solely qualitative research design of which 55 56 213 29 used only interview as a method, six applied only focus group discussions (n=4) or 57 58 214 text analysis (n=2) as a method, and five studies applied various qualitative methods. 59 215 Nine studies applied mixed methods (mix of quantitative and qualitative methods) of 60 7

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1 2 3 216 which six used a combination of a survey and interviews, two survey and text analysis,

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 217 and one survey and focus group discussions. 6 7 218 8 9 219 Table 1. Bibliometric results of included articles. 10 11 12 Year of publication Country of study Study design 13 14 2010 - 2019 52 Iceland 24 Quantitative 47 15 16 2000 - 2009 27 Norway 24 Qualitative 40 17 18 1989 - 1999 For peer17 Sweden review22 onlyMixed-Methods 9 19 20 Language of article Canada 10 Methods applied in study 21 22 English 87 Alaska (USA) 9 Survey 56 23 24 Norwegian 6 Finland 5 Interview 40 25 26 Danish 1 Greenland 4 Focus groups 9 27 28 Icelandic 1 Russia 3 Text analysis 6 29 30 Finnish 1 Faroe Islands 1 Participant observation 3 31 220 32 33 221 Quantitative studies were the most commonly used study design in Sweden (n=13), 34 35 222 Norway (n=13), and Iceland (n=12), and less than half of the studies in these three 36 37 223 Scandinavian countries applied qualitative methods (figure 3). Qualitative methods were http://bmjopen.bmj.com/ 38 39 224 largely found in Alaska (n=4), Canada (n=7), Greenland (n=4) and the Faroe Islands 40 225 (n=1). 41 42 43 226 The identified studies were further categorized into the different disease groups based on 44 227 the focus or included patient group in the studies. Nearly a fifth of the studies did not 45 on October 1, 2021 by guest. Protected copyright. 46 228 focus on a specific illness and were categorized as general (figure 4). These general 47 48 229 studies typically took the form of a patient experience survey sent to a random sample of 49 230 citizens or patients in a particular region or hospital network (n=18). Other common areas 50 51 231 of patient care where patient experience studies were conducted were in maternal health 52 53 232 (n=13), primary healthcare (PHC) (n=12), mental health and addiction (n=9), cancer 54 55 233 (n=8), emergency (n=8), and surgery (n=6). Less than five studies were identified in each 56 234 of the remaining nine areas (figure 4). Studies of primary healthcare, surgery, pain, 57 58 235 headache, and pediatric issues were more likely to use quantitative methodologies 59 60 8

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1 2 3 236 whereas studies of cancer, geriatric health, diabetes, disability, and pharmacy issues were

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 237 more likely to rely on qualitative methodologies (figure 4). Studies of general health 6 7 238 issues, maternal/child health, mental health/addiction, emergency, and communicable 8 239 disease used quantitative and qualitative methodologies in approximately equal measure. 9 10 11 240 12 13 241 Figure 3. Country by Study design (n=102), 3 of the 96 studies included 3 countries. 14 15 242 16 17 243 Figure 4. Reason for seeking care by Study design (n=96). 18 For peer review only 19 20 244 21 22 245 Thematic results 23 246 Over half of the included articles did not focus on any of the four predefined categories 24 25 247 that were thought to be characteristic of circumpolar health systems: Indigenous values, 26 27 248 rural/remote health, climate change, or telehealth (n=49). Table 2 and figure 5 provide an 28 29 249 overview of the 47 articles that account for findings valuable to the circumpolar-specific 30 250 patient experience categories. The remaining studies related to patient perspectives and 31 32 251 experiences with healthcare services were included in the general analysis of patient 33 34 252 experiences studies. 35 36 253 37 http://bmjopen.bmj.com/ 38 254 Table 2. Studies containing one or more of the four predefined categories (n=47). 39 40 41 Telehealth Rural/remote Indig. values Climate change 42 4 15 6 - 43 44 7 3 45 2 on October 1, 2021 by guest. Protected copyright. 46 47 8 48 255 49 50 256 Figure 5. Country by Category (n=47). 51 52 53 257 54 55 258 It was noteworthy that every Canadian and Greenlandic article contained at least one 56 57 259 predefined circumpolar patient experience factor: Indigenous values, rural and remote 58 260 healthcare, climate change, or telehealth. 7 out of 9 articles from Alaska (US) (77%), 15 59 60 9

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1 2 3 261 out of 24 articles from Norway (63%), 2 out of 5 articles from Finland (40%), 1 out of 3

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 262 articles from Russia (33%), 6 out of 22 articles from Sweden (27%), and 2 out of 24 6 7 263 articles from Iceland (8%) contained at least one of these factors, while the article from 8 264 Faroe Islands contained none of the factors. Of the predefined circumpolar issues, rural 9 10 265 and remote healthcare was the most commonly captured factor (n=36), followed by 11 12 266 Indigenous values (n=21), telehealth (n=13), and climate change (n=3). Results relevant 13 14 267 to the four pre-defined themes are summarized below. 15 16 268 17 18 269 Rural/remote &For telehealth peer review only 19 20 270 Receiving care in one’s home community, geographical proximity and the possibility to 21 271 save costs and time for not having to travel to urban areas for healthcare services, were 22 23 272 aspects important to positive patient experiences.15 16 24-35 In the 13 studies investigating 24 25 273 patient experiences with telehealth, patients responded that telehealth had obviated the 26 27 274 need for travel or that even if telehealth had limitations, they would still prefer 28 275 teleconsultation from having to travel far distances.16 26 28 34 36-38 One Swedish study found 29 30 276 that patients experienced that the waiting times for telehealth calls were too long,39 while 31 32 277 a study in Finland found that patient felt they cut waiting time and were enabled to access 33 278 quality care faster.40 34 35 36 279 Experiences with telemedical devices were diverse among the identified studies. Three 37 280 studies noted that patients appreciated the presence of more than one health worker in the http://bmjopen.bmj.com/ 38 39 281 consultation, which gave them the experience of a more thorough consultation.26 35 41 40 41 282 Patients in other studies doubted professionals’ ability to diagnose certain diseases 42 15 28 43 283 without physical contact. They were in some cases able to follow the examination on 44 284 the screen,26 41 while others were uncomfortable appearing on the screen.26 Negative 45 on October 1, 2021 by guest. Protected copyright. 46 285 experiences with telemedical consultations were linked to not being able to build a 47 15 41 48 286 personal relationship with the professional on the other side of the screen or 49 287 participants in the consultation not introducing themselves.28 40 Lastly, some studies on 50 51 288 satisfaction with telehealth consultations found that patients saw further potential if 52 53 289 technology was improved.15 28 54 55 290 Negative patient experiences or issues related to receiving care in urban areas despite 56 57 291 having to travel far were unstable or lack of physician coverage,25 32 33 42-44 perceived 58 45-48 59 292 disparities in accessibility to high quality healthcare in rural regions, limited services 60 10

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1 2 3 293 offered in rural areas,30 32 43 49 poor continuity in care or not being able to build a

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 294 relationship with the provider lead to insecurity among patients and thereby decreased 6 50 7 295 use of health services, lack of accommodation for patients and family members when 8 296 treated in urban areas,38 51 52 and being overwhelmed and disoriented when traveling to 9 10 297 unknown urban areas.51 53 11 12 298 The 15 qualitative studies gave more nuanced patient experiences. Studies from 13 14 299 Greenland and Canada with Inuit patients found that not being treated in their home 15 16 300 community gave patients the feeling of being isolated and cut off, as well as feeling out 17 301 of their natural rhythm and tradition.30 43 52 54-57 In one of these studies this was also 18 For peer review only 19 302 associated with the context of colonial history.56 Having to leave one’s family and life in 20 21 303 order to access care also lead to destabilizing situations such as patients missing work.43 22 57 43 23 304 Not having immediate access to services made patients in rural areas feel unsafe. 24 305 Levels of trust that rural patients felt towards local healthcare workers varied across 25 26 306 different studies, with some patients worrying about the risk of gossiping in small 27 28 307 communities.29 43 58-60 A study from Russia assessing the diagnostic delay of tuberculosis 29 30 308 found that patients in rural areas described physicians to not be equipped with the 31 309 competencies required for practice in the region, and they did not expect “good doctors” 32 33 310 wanting to serve their communities, which influences their choice of accessing care.61 34 35 311 Another remote challenge in relation to healthcare discussed, was the difficulty of being 36 312 able to access healthy food, which often was a recommendation or part of a treatment 37 http://bmjopen.bmj.com/ 38 313 given by physicians.58 62 39 40 314 Indigenous values & climate change 41 42 315 A majority of the studies presenting aspects related to Indigenous values used qualitative 43 44 316 methods (15 of 21). Aspects of patient experiences categorized as being a characteristic 45 on October 1, 2021 by guest. Protected copyright. 46 317 for Indigenous values related overall to being able to receive information in their 47 318 Indigenous language and the availability of a good translator,15 42 43 47 49 51-53 56-59 63 64 48 49 319 health professionals and services being culturally responsive,15 47 49 54 64-66 recognizing 50 52 55 58 59 66 67 51 320 traditional medicine or having a holistic perspective in care, and when 52 321 hospitalized, having access to traditional food, nature, social and cultural activities.51-53 55 53 54 322 58 62 68 55 56 323 Patients in studies from Greenland and Canada stated issues with not being able to receive 57 58 324 information in their Indigenous language in consultations, pamphlets or signs in the health 59 60 11

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1 2 3 325 centres.51 52 57 63 This was also linked with poor provision of good quality interpreters.42

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 326 47 51 53 54 56 63 In a Norwegian study, Sami patients felt that some medical terms did not 6 64 7 327 exist in the Sami language, which challenged the patient-provider conversation. Many 8 328 studies conducted in areas with Sami populations reported Sami patients to have had 9 10 329 negative experiences with healthcare providers not knowing and respecting their culture 11 12 330 and customs42 53 64 enhancing existing mistrust from the colonial history.49 66 13 14 331 Meaningful activities and access to traditional foods were important to patient 15 16 332 experiences when hospitalized. A Norwegian study focusing on the benefits of providing 17 333 traditional foods in dementia care, resulted in increased wellbeing and improved appetite 18 For peer review only 19 334 among patients.68 This was also experienced by Inuit patients in a Canadian study.51 Three 20 21 335 articles51 53 58 reported the health-promoting benefits of time spent on the land. Of these, 22 53 23 336 Hanssen described how medical institutions often lack opportunities for Indigenous 24 337 people to engage with the ‘natural rhythm of life’ through outdoor activities or 25 26 338 consumption of traditional food. 27 28 339 Only three studies using qualitative or mixed methods mentioned climate change as an 29 30 340 aspect influencing patients’ experiences in healthcare.43 58 62 Bird, et al. 58 described how 31 32 341 climate change was making it harder for Inuit living on Baffin Island to hunt country food 33 58 43 34 342 and maintain their diabetes treatment plans. Oosterveer and Young and Wetterhall, et 35 343 al. 62 noted how extreme weather conditions challenged patients’ access to healthcare and 36 37 344 transportation to hospital. These are aspects linked to climate change and circumpolar http://bmjopen.bmj.com/ 38 39 345 peoples’ health experiences. 40 41 346 Studies with Inuit and Sami populations found that services were often too task- or 42 52 53 55 67 43 347 medication-driven while lacking meaningful and patient-centred activities. 44 348 Indigenous patients appreciated consultations where physicians listened instead of asking 45 on October 1, 2021 by guest. Protected copyright. 46 349 many questions.59 47 48 350 Other patient experience aspects 49 50 351 Over half of all articles discussed the influence of health professionals’ attitudes towards 51 52 352 the patient as a determinant of patient satisfaction. Good professional skills were 53 353 described in studies as: acting professional and making the patient feel relaxed or calm,29 54 55 354 69 close monitoring,39 70 71 professionals being confident and not seeming unsure in 56 57 355 consultations,72 competence of midwife as well as their presence without focusing only 58 73 74 59 356 on their tasks created a safe haven. 60 12

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1 2 3 357 Professionals’ competence for compassionate care and ability to show empathy further

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 358 influence patients experience of care.39 45 75-78 This was described in studies as nurses’ 6 50 76 79 7 359 and physician’s ability to resolve uncertainty, encouraging patients to ask questions 8 360 and respecting patients’ knowledge,39 80-82 meeting the patients’ needs,83-86 and being 9 10 361 supportive.48 73 74 87 88 Negative patient experiences were rooted in poor support,86 89 90 11 12 362 indifference of staff towards patients or being ignored,65 72 85 88 91 and personnel having a 13 85 91 14 363 negative attitude. 15 16 364 Narratives from Norwegian community mental health centres pointed out an issue of 17 365 power imbalance between male physicians and female patients.60 Three studies found that 18 For peer review only 19 366 patients did not feel comfortable to disagree or express criticism towards a health 20 21 367 professional, or experienced that complaints were not properly recognized and handled.47 22 83 91 92 23 368 24 25 369 Being respected as an individual and not only seen as a patient was associated with 26 25 48 73 74 77 81 91 93-95 27 370 positive experiences, while the inverse, ‘being referred to as a diagnosis 28 371 rather than person’,91 was associated with negative experiences. Patients reported 29 30 372 negative experiences when health personnel only read from the hospital record instead of 31 32 373 listening to the patient39 and were poor in communicating.26 52 94 Some studies’ 33 29 48 58 59 63 67 83 87-89 92 96-102 34 374 participants reported not having received sufficient information 35 375 leading to insecurity and vulnerability for some patients.63 87 97 Consequently, gaining 36 37 376 adequate and useful information was described to empower patients next to contribute to http://bmjopen.bmj.com/ 38 37 39 63 74 78 79 85 94 103-108 39 377 satisfaction. 40 41 378 Promptness45 and not being in a rush but having time when being with the patient was 42 43 379 important for patient experience; this was also linked to complaints about short 44 380 appointment times.25 39 52 54 74 85 91 104 In nine studies long waiting times for treatment and 45 on October 1, 2021 by guest. Protected copyright. 46 381 appointment, as well as diagnostic delay were reported and influenced satisfaction of care 47 48 382 negatively.29 32 52 88 91 100 109-111 49 50 383 Coordination of care and cooperation between professionals was also mentioned as 51 52 384 adversely affecting the services patients received – the feeling of falling out of the 53 385 system.29 33 39 48 88 100 In relation to this it was also important for patients to meet the same 54 55 386 professionals in order to experience a greater continuity of care.48 112 Relatives’ 56 57 387 involvement in care and their support further contributes to a positive patient 58 59 60 13

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1 2 3 388 experience,52 102 105 113 114 since hospitalization, for example, can lead to isolation and

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 389 makes social support even more important.55 77 109 6 7 390 Other aspects criticized by patients were the cleanliness, structure and quality of the 8 9 391 facilities,38 92 96 115 lack of activities such as sports, parking spaces and heating systems,77 10 85 116 85 45 115 11 392 hospital food, high costs such as medicines or even the lack of medicines. 12 13 393 14 15 394 DISCUSSION 16 17 395 This review aimed to scope the literature and identify peer-reviewed studies reporting on 18 For peer review only 19 396 patient experiences of healthcare in the circumpolar region. We chose to use four pre- 20 21 397 defined categories relevant to circumpolar health to provide structure to our results. These 22 398 categories included rural and remote geography, telehealth, Indigenous values, and 23 24 399 climate change. 25 26 400 The most common descriptions of the rural and remote theme included patient 27 28 401 experiences with travel costs, weather conditions influencing the ability to travel, and 29 30 402 lack of physicians influencing continuity of care. Increased accessibility of care and 31 32 403 concerns about the ability to establish a personal relationship with providers were 33 404 commen descriptions relevant to the telehealth theme. Similarly, studies of Indigenous 34 35 405 values in the experiences of healthcare included being able to speak one’s own language 36 37 406 during consultations, the difficulties of accessing an interpreter, access to traditional food http://bmjopen.bmj.com/ 38 407 and outdoor activities during hospitalization, experiencing isolation from family and 39 40 408 community when hospitalized, and receiving holistic care. 41 42 409 This review demonstrates that rural and remote geography, telehealth, climate change 43 44 410 and Indigenous values are highly relevant elements of circumpolar health systems. 45 on October 1, 2021 by guest. Protected copyright. 46 411 However, there are numerous other dimensions of care relevant to circumpolar 47 48 412 populations that should be investigated further. One example is the relationship between 49 413 patient experiences and the environment. Climate change was a pre-defined category but 50 51 414 only mentioned in three out of 96 articles. In a study that took place in Nunavut, diabetes 52 53 415 patients described how changes in the climate have affected the migratory habits of 54 416 animals which has impeded their ability to procure traditional foods. This has made it 55 56 417 more difficult for these patients to obtain healthy food that can be used to manage their 57 58 418 diabetes.58 Other articles discussed how the increasing frequency of severe weather events 59 60 14

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1 2 3 419 has impacted patients traveling far distances to access treatment.43 62 Circumpolar

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 420 literature has described the vulnerabilities of Indigenous and non-Indigenous peoples and 6 7 421 the impacts of climate change on health and health systems. Impacts of climate change 8 422 include changes in vectors of disease, emerging epidemics, food security, increases in 9 10 423 land-based injury and mental health issues.117-121 Considering the myriad effects of 11 12 424 climate change on the health of northern populations, in particular Indigenous groups who 13 122 14 425 depend on natural resources for their wellbeing, the natural environment could be 15 426 explored as a critical determinant of patient experiences for circumpolar populations. 16 17 427 Contextualizing climate change as a determinant of patient experiences would necessitate 18 For peer review only 19 428 a broader definition of what constitutes a ‘health system’. This shift away from the 20 21 429 framework that defines health systems as the sum of institutions and resources that deliver 22 23 430 health services to a population requires a values-based conception grounded in the 24 431 circumpolar context and especially in Indigenous knowledge.123 124 A multi-national 25 26 432 group previously identified and described nine values essential to integrating Indigenous 27 28 433 ideologies into health system stewardship.125 Many of these values, such as cultural 29 30 434 responsiveness, kinship, and holism were echoed in much of the Indigenous literature 31 435 included in this review. An expanded definition of health systems that not only takes into 32 33 436 account the experiences of patients within healthcare facilities, but also of individuals 34 35 437 enhancing their mental and physical health through on-the-land activities, would be more 36 438 concordant with the circumpolar context. Additionally, it would enable capture of 37 http://bmjopen.bmj.com/ 38 439 relevant information that could guide health system improvement, such as features in the 39 40 440 community and natural environment that promote health. A panel of circumpolar health 41 42 441 experts previously noted that moving away from the “narrow paradigm of ‘health 43 442 systems’” would be necessary to promote system-wide changes that support patients.123 44 45 on October 1, 2021 by guest. Protected copyright. 46 443 Another critical component of making health systems more responsive to patient 47 444 experiences is evaluation. Some regions rely on survey-based methodologies to collect 48 49 445 patient feedback, while others use interviews, focus groups, and other qualitative 50 51 446 methodologies. In this study, we found that Scandinavia accounts for the majority of the 52 447 quantitative studies, where patient satisfaction is often rated from predefined 53 54 448 questionnaires. This is a method used to standardize evaluation of both patients’ views 55 56 449 on facilities, information and elements of treatment, and to optimize and improve these 57 58 450 areas. Qualitative studies are used to access a more nuanced knowledge of perceived 59 451 satisfaction and experience of the individual or smaller groups. Qualitative methods were 60 15

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1 2 3 452 more frequently employed in studies originiating in Canada, Alaska and Greenland.

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 453 Notably, these were the same countries that reported most on Indigenous values and 6 7 454 rural/remote themes. Additionally, climate change only came up as a factor in qualitative 8 455 and mixed-method studies, which emphasizes the importance of using qualitative 9 10 456 methods to gather data on what is truly important to patients rather than solely relying 11 12 457 upon standardized surveys. 13 14 458 This discussion of aligning health systems more closely with patient needs benefits from 15 16 459 a review of global literature from settings that share similar characteristics with 17 460 circumpolar regions. Australia, which also has large rural and remote areas as well as an 18 For peer review only 19 461 Indigenous population, has framed these discussions around patient experiences through 20 21 462 the lens of cultural safety and has developed a monitoring framework that measures the 22 126 23 463 cultural responsiveness and experiences of patients within the health system. Cultural 24 464 safety is also emerging as a priority for circumpolar national and Indigenous governments 25 26 465 and this framing of patient experiences warrents further consideration for circumpolar 27 28 466 nations where colonial legacies are prominent in health services. Numerous studies of 29 30 467 Aboriginal and Torres Strait Islander populations identified themes that this study also 31 468 found to be relevant to circumpolar Indigenous groups, including traditional foods, 32 33 469 language services, coordination of care, and the importance of Indigenous staff 34 127 128 35 470 members. These similarities suggest that changes meant to improve the experiences 36 471 of patients within circumpolar health systems could be grounded by previous successes 37 http://bmjopen.bmj.com/ 38 472 found elsewhere in the world. 39 40 473 This scoping review is both comprehensive and thorough; no restrictions limited the 41 42 474 search by language or date of publication. This allowed for the broadest inclusion of 43 44 475 relevant articles possible. Since 96 relevant articles were included in our review, we chose 45 on October 1, 2021 by guest. Protected copyright. 46 476 not to search for grey literature. We abstained from applying an external framework; this 47 477 allowed for an analysis grounded more organically in the data provided and responsive 48 49 478 to the circumpolar context. 50 51 479 Furthermore, nearly every article identified through the search criteria could be accessed 52 53 480 in full text, and all full texts were reviewed by multiple authors. Similar redundancy was 54 55 481 built into the data extraction process. These procedures ensured accuracy and rigor. 56 57 482 Based on this extensive review, next steps could involve the development of a 58 59 483 circumpolar patient experience framework to guide future studies and comparative work 60 16

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1 2 3 484 in this area. Furthermore, a review of the existing grey literature would also be relevant,

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 485 since, to our knowledge, not all research conducted in the circumpolar region is published 6 7 486 in peer-reviewed journals. Additionally, this work could be further contextualized in 8 487 sharing circles and other community-based participatory methodologies to enable 9 10 488 validation of themes and additional comparison. Such approaches would enable future 11 12 489 studies and health systems to become more responsive to the needs of circumpolar 13 14 490 populations. 15 16 491 17 18 492 Acknowledgements:For We peerwould like toreview acknowledge theonly librarians Sandra Campbell at 19 493 the University of Alberta and Anne Faber Hansen at the University of Southern Denmark 20 494 who helped to set up a comprehensive and detailed search and assisting us in accessing 21 495 articles. 22 23 496 Author contributions: Conceived and designed the review: CI, NFH, SC, CVLL, KJ, 24 497 NHL. Screening and reviewing articles and data: NFH, CI, KJ, NHL. Data extraction: 25 498 NH, CI. Primary draft of the manuscript : CI, NFH. Revising the manuscript: CI, NFH, 26 27 499 SC, CVLL, NHL, KJ. All authors reviewed and approved the manuscript. 28 500 Funding: This research received no specific grant from any funding agency in the public, 29 501 commercial or not-for-profit sectors. 30 31 502 Competing interest: The authors declare that they have no competing interest. 32 33 503 Patient consent: Not required. 34 504 Data sharing statement: Partial extraction table made available online (supplement 2). 35 505 Full version available on request. 36 37

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1 2 3 720 75. Garcia BH, Storli SL, Småbrekke L. A pharmacist-led follow-up program for patients

4 721 with coronary heart disease in North Norway–a qualitative study exploring patient BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 722 experiences. BMC research notes 2014;7(1):197. 7 723 76. Fridfinnsdottir EB. Icelandic women's identifications of stressors and social support 8 724 during the diagnostic phase of breast cancer. Journal of Advanced Nursing 9 725 1997;25(3):526-31. 10 726 77. Biering P, Jensen VH. The concept of patient satisfaction in adolescent psychiatric 11 727 care: A qualitative study. Journal of child & adolescent psychiatric nursing 12 728 2011;24(1):3-10. 13 14 729 78. DeMay DA. The experience of being a client in an Alaska public health nursing home 15 730 visitation program. Public Health Nursing 2003;20(3):228-36. 16 731 79. Andén A, André M, Rudebeck C-E. What happened? GPs’ perceptions of consultation 17 732 outcomes and a comparison with the experiences of their patients. The European 18 733 journal ofFor general peerpractice 2010;16(2):80-84. review only 19 734 80. Jonsdottir T, Gunnarsdottir S, Jonsdottir H. Chronic pain-related patient-provider 20 735 communication: The significance of health related quality of life and satisfaction. 21 22 736 Scandinavian journal of pain 2015;8(1):50-50. 23 737 81. Lanier AP, Kelly JJ, Holck P. Pap prevalence and cervical cancer prevention among 24 738 Alaska Native women. Health care for women international 1999;20(5):471-86. 25 739 82. Löve L, Traustadóttir R, Rice JG. Trading autonomy for services: Perceptions of users 26 740 and providers of services for disabled people in Iceland. Alter 2018;12(4):193- 27 741 207. 28 29 742 83. Lövgren G, Sandman PO, Engström B, et al. The view of caring among patients and 30 743 personnel. Scandinavian journal of caring sciences 1998;12(1):33-41. 31 744 84. Bragadóttir H. A descriptive study of the extent to which self‐perceived needs of 32 745 parents are met in paediatric units in Iceland. Scandinavian Journal of Caring 33 746 Sciences 1999;13(3):201-07. 34 747 85. Thorsteinsson LS. The quality of nursing care as perceived by individuals with 35 748 chronic illnesses: the magical touch of nursing. Journal of clinical nursing 36 37 749 2002;11(1):32-40. http://bmjopen.bmj.com/ 38 750 86. Sigurdardottir VL, Gamble J, Gudmundsdottir B, et al. The predictive role of support 39 751 in the birth experience: A longitudinal cohort study. Women & Birth 40 752 2017;30(6):450-59. 41 753 87. Hildingsson I, Cederlöf L, Widén S. Fathers’ birth experience in relation to midwifery 42 754 care. Women & birth 2011;24(3):129-36. 43 755 88. Hågensen G, Nilsen G, Mehus G, et al. The struggle against perceived negligence. A 44 45 756 qualitative study of patients’ experiences of adverse events in Norwegian on October 1, 2021 by guest. Protected copyright. 46 757 hospitals. BMC health services research 2018;18(1):302. 47 758 89. Haines HM, Hildingsson I, Pallant JF, et al. The role of women's attitudinal profiles 48 759 in satisfaction with the quality of their antenatal and intrapartum care. Journal of 49 760 Obstetric, Gynecologic & Neonatal Nursing 2013;42(4):428-41. 50 761 90. Lundgren I, Karlsdottir SI, Bondas T. Long-term memories and experiences of 51 52 762 childbirth in a Nordic context—a secondary analysis. International Journal of 53 763 Qualitative Studies on Health & Well-being 2009;4(2):115-28. 54 764 91. Skär L, Söderberg S. Patients’ complaints regarding healthcare encounters and 55 765 communication. Nursing open 2018;5(2):224-32. 56 766 92. Lovgren G, Eriksson S, Sandman P-O. Effects of an implemented care policy on 57 767 patient and personnel experiences of care. Scandinavian journal of caring 58 768 sciences 2002;1(16):3-11. 59 60 22

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1 2 3 769 93. Pellikka H, Lukkarinen H, Isola A. Potilaiden kasityksia hyvasta hoidosta

4 770 yhteispaivystyksessa [Patients' views of good nursing care in an emergency unit]. BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 771 Hoitotiede 2003;15(4):166-79. 7 772 94. Jóhannesdóttir S, Hjörleifsdóttir E. Communication is more than just a conversation: 8 773 family members' satisfaction with end-of-life care. International journal of 9 774 palliative nursing 2018;24(10):483-91. 10 775 95. Heiberg E, Skurtveit S. Voices of women in North-West Russia - About maternity 11 776 care. Tidsskrift for den Norske Laegeforening 2005;125(20):2826-28. 12 777 96. Sigurðardottir A. Satisfaction among ambulatory surgery patients in two hospitals in 13 14 778 Iceland. Journal of Nursing Management 1996;4(2):69-74. 15 779 97. Högberg U, Lynöe N, Wulff M. Cesarean by choice? Empirical study of public 16 780 attitudes. Acta obstetricia et gynecologica Scandinavica 2008;87(12):1301-08. 17 781 98. Snorradottir MH, Arnar DO, Olafsson RF, et al. Viðhorf sjúklinga til veittrar þjónustu 18 782 og viðmótsFor heilbrigðisstarfsfólks peer review á Hjartagátt Landspítalaonly [Patient satisfaction 19 783 with care and interaction with staff in the Acute Cardiac Unit at Landspitali - The 20 784 National University Hospital of Iceland]. Laeknabladid 2014;100(7-8):385-90. 21 22 785 99. Wåhlberg H, Braaten T, Broderstad AR. Impact of referral templates on patient 23 786 experience of the referral and care process: a cluster randomised trial. BMJ open 24 787 2016;6(10):e011651. 25 788 100. Svavarsdóttir SJ, Júlíusdóttir S, Lindqvist R. A Holistic View in Psychiatric 26 789 Rehabilitation: The Effects of Structure in Psychiatric Institutions. Journal of 27 790 social work in disability & rehabilitation 2013;12(4):272-94. 28 29 791 101. Askham J, Kuhn L, Frederiksen K, et al. The information and support needs of 30 792 Faroese women hospitalised with an acute coronary syndrome. Journal of clinical 31 793 nursing 2010;19(9‐10):1352-61. 32 794 102. Ingadottir B, Johansson Stark Å, Leino‐Kilpi H, et al. The fulfilment of knowledge 33 795 expectations during the perioperative period of patients undergoing knee 34 796 arthroplasty–a Nordic perspective. Journal of clinical nursing 2014;23(19- 35 797 20):2896-908. 36 37 798 103. Gottfredsdottir H, Steingrímsdóttir Þ, Björnsdóttir A, et al. Content of antenatal care: http://bmjopen.bmj.com/ 38 799 Does it prepare women for birth? Midwifery 2016;39:71-77. 39 800 104. Jonsdottir T, Gunnarsdottir S, Oskarsson GK, et al. Patients' Perception of Chronic- 40 801 Pain-Related Patient–Provider Communication in Relation to Sociodemographic 41 802 and Pain-Related Variables: A Cross-Sectional Nationwide Study. Pain 42 803 Management Nursing 2016;17(5):322-32. 43 804 105. Sandlund M, Hansson L. Patient satisfaction in a comprehensive sectorized 44 45 805 psychiatric service: Study of a 1-year-treated incidence cohort. Nordic Journal of on October 1, 2021 by guest. Protected copyright. 46 806 Psychiatry 1999;53(4):305-12. 47 807 106. Trumpy JH. Should hospital patients get copies of their medical reports? Tidsskrift 48 808 for den Norske Laegeforening 2002;4(122):394-96. 49 809 107. Garratt AM, Danielsen K, Forland O, et al. The Patient Experiences Questionnaire 50 810 for Out-of-Hours Care (PEQ-OHC): data quality, reliability, and validity. 51 52 811 Scandinavian journal of primary health care 2010;28(2):95-101. 53 812 108. Risberg T, Bremnes R, Wist E, et al. Communicating with and treating cancer 54 813 patients: How does the use of non-proven therapies and patients' feeling of mental 55 814 distress influence the interaction between the patient and the hospital staff. 56 815 European Journal of Cancer 1997;33(6):883-90. 57 816 109. Hjörleifsdóttir E, Hallberg IR, Gunnarsdóttir ED, et al. Living with cancer and 58 817 perception of care: Icelandic oncology outpatients, a qualitative study. Supportive 59 60 818 Care in Cancer 2008;16(5):515-24. 23

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1 2 3 819 110. Bekkelund SI, Ofte HK, Alstadhaug KB. Patient satisfaction with conventional,

4 820 complementary, and alternative treatment for cluster headache in a Norwegian BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 821 cohort. Scandinavian journal of primary health care 2014;32(3):111-16. 7 822 111. Franzén C, Björnstig U, Jansson L, et al. Injured road users’ experience of care in 8 823 the emergency department. Journal of clinical nursing 2008;17(6):726-34. 9 824 112. Hjörleifsdóttir E, Hallberg IR, Gunnarsdóttir ED. Satisfaction with care in oncology 10 825 outpatient clinics: psychometric characteristics of the Icelandic EORTC 11 826 IN‐PATSAT32 version. Journal of clinical nursing 2010;19(13‐14):1784-94. 12 827 113. Ljung S, Olsson C, Rask M, et al. Patient experiences of a theory-based lifestyle- 13 14 828 focused group treatment in the prevention of cardiovascular diseases and type 2 15 829 diabetes. International journal of behavioral medicine 2013;20(3):378-84. 16 830 114. Sigurdardottir AO, Garwick AW, Svavarsdottir EK. The importance of family 17 831 support in pediatrics and its impact on healthcare satisfaction. Scandinavian 18 832 journal ofFor caring sciencespeer 2017;31(2):241-52. review only 19 833 115. Fotaki M. Users’ perceptions of health care reforms: quality of care and patient rights 20 834 in four regions in the Russian Federation. Social Science & Medicine 21 22 835 2006;63(6):1637-47. 23 836 116. Aléx J, Karlsson S, Saveman B-I. Patients’ experiences of cold exposure during 24 837 ambulance care. Scandinavian journal of trauma, resuscitation & emergency 25 838 medicine 2013;21(1):44. 26 839 117. Ford JD, Berrang-Ford L, King M, et al. Vulnerability of Aboriginal health systems 27 840 in Canada to climate change. Global Environmental Change 2010;20(4):668-80. 28 29 841 doi: 10.1016/j.gloenvcha.2010.05.003 30 842 118. Costello A, Maslin M, Montgomery H, et al. Global health and climate change: 31 843 moving from denial and catastrophic fatalism to positive action. Philos Transact 32 844 A Math Phys Eng Sci 2011;369(1942):1866-82. doi: 10.1098/rsta.2011.0007 33 845 [published Online First: 2011/04/06] 34 846 119. Parkinson A. Sustainable Development, Climate Change and Human Health in the 35 847 Arctic. International Journal of Circumpolar Health 2010;69(1) 36 37 848 120. Lancet and the University College London Institute for Global Health Commission. http://bmjopen.bmj.com/ 38 849 Managing the health effects of climate change. The Lancet May 16, 2009;373 39 850 121. Bourque F, Willox AC. Climate change: the next challenge for public mental health? 40 851 Int Rev Psychiatry 2014;26(4):415-22. doi: 10.3109/09540261.2014.925851 41 852 122. Parkinson AJ, Evengård B. Climate change, its impact on human health in the Arctic 42 853 and the public health response to threats of emerging infectious diseases. Global 43 854 Health Action 2009;2(1):2075. 44 45 855 123. Chatwood S, Bytautas J, Darychuk A, et al. Approaching a collaborative research on October 1, 2021 by guest. Protected copyright. 46 856 agenda for health systems performance in circumpolar regions. International 47 857 journal of circumpolar health 2013;72(1):21474. 48 858 124. Bors EK, Gladun E, Gritsenko D, et al. 2019 Policy Brief-Fulbright Arctic Initiative 49 859 Symposium. 2019 50 860 125. Chatwood S, Paulette F, Baker GR, et al. Indigenous values and health systems 51 52 861 stewardship in circumpolar countries. International Journal of Environmental 53 862 Research Public Health 2017;14(12):1462. 54 863 126. Australian Institute of Health and Welfare. Cultural safety in health care for 55 864 Indigenous Australians: monitoring framework. Canberra: AIHW: Australian 56 865 Government: Australian Institute of Health and Welfare, 2020. 57 866 127. Green M, Anderson K, Griffiths K, et al. Understanding Indigenous Australians’ 58 867 experiences of cancer care: Stakeholders’ views on what to measure and how to 59 60 868 measure it. BMC health services research 2018;18(1):982. 24

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1 2 3 869 128. Wotherspoon C, Williams CM. Exploring the experiences of Aboriginal and Torres

4 870 Strait Islander patients admitted to a metropolitan health service. Australian BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 871 Health Review 2019;43(2):217-23. 7 872 8 9 10 11 12 13 14 15 16 17 18 For peer review only 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44 45 on October 1, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 25

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33 http://bmjopen.bmj.com/ 34 35 36 37 38 39 40

41 on October 1, 2021 by guest. Protected copyright. 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml Page 29 of 35 BMJ Open

1 2 3 Figure 3. Country by Study design (n=102), 3 of the 96 studies included 3 countries.

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 14 7 8 12 9 10 10 11 12 8 13 14 6 15 16 4 17 18 For peer review only 19 2 20 21 0 22 Iceland Sweden Norway Canada Alaska (US) Finland Greenland Russia Faroe 23 Islands 24 Quantitative Qualitative Mixed-methods 25 26 27 28 29 30 31 32 33 34 35 36 37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44 45 on October 1, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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1 2 3 Figure 4. Reason for seeking care by Study design (n=96).

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 General 7 Maternal Health 8 Primary Healthcare 9 Mental Health/Addiction 10 Cancer 11 Emergency 12 Surgery 13 Pain 14 Geriatric Health 15 Diabetes 16 Headache 17 Communicable Disease 18 DisabilityFor peer review only 19 Pharmacy 20 Dental 21 Pediatrics 22 23 0 2 4 6 8 10 12 14 16 18 24 Quantitative Qualitative Mixed-methods 25 26 27 28 29 30 31 32 33 34 35 36 37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44 45 on October 1, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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1 2 3 Figure 5. Country by Category (n=47).

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 25 7 8 9 20 10 11 12 15 13 14 15 10 16 17 18 5 For peer review only 19 20 21 0 22 Canada Norway Alaska (US) Sweden Greenland Finland Iceland Russia Faroe 23 Islands 24 Indig. Values Rural/remote Climate change Telehealth 25 26 27 28 29 30 31 32 33 34 35 36 37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44 45 on October 1, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60

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1 2 3

4 Supplement 1 – Search strings BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 Overview in table 7 8 Patient Geographical/population block/terms 9 10 experience 11 terms 12 "patient Broad geographic regions 13 experience*" (circumpolar or polar or arctic or greenland or Alaska or iceland or ((north* or 14 15 "patient rural or remote or polar or arctic or circumpolar) adj3 (norway or sweden or 16 satisfaction" finland or Russia)) or "Barents region").ti,ab,kw. 17 "PREM#" 18 (health and IndigenousFor group peer terms review only 19 "user 20 (inuit or sami or saami or "First Nation#" or metis or inuk or yup'ik or Inuviat* 21 satisfaction") or Yupik* or Aleut* or Inupia* or "Alaska Native#" or dene or gwichin or 22 "patient gwich'in or Athabas* or).ti,ab,kw. 23 input" 24 (health and 25 Canada geographic terms 26 "user (nunavut or nunavik or nunatsiavut or inuvialuit or yukon or northwest 27 feedback") territories or nunavummiut or kitikmeot or qitirmiut or kivalliq or qikiqtani or 28 (health and baffin or kuujjuaq).ti,ab,kw. 29 "consumer 30 satisfaction") 31 Sweden geographic terms 32 (health and (Jamtland or (Berg not “balance scale”) or Bracke or Krokom or Ragunda or 33 "consumer Stromsund or (Are adj1 (Jamtland or Sweden or Sverige)) or Ostersund or 34 feedback") Harjedalen or Vasternorrland or Sundsvallor Timra or Ange or Harnosand or 35 (health and “Kramfors Solleftea” or Ornskoldsvik or Vasterbotten or Dorotea or Lycksele 36 "client 37 or Mala or Sorsele or Storuman or Vilhelmina or Asele or Norsjo or Robertsfors http://bmjopen.bmj.com/ 38 satisfaction") or Skelleftea or Umea or Vindeln or Vannas or Bjurholm or Nordmaling or 39 (health and Norrbotten or Pajala or Overtornea or Overkalix or Boden or Kalix or 40 "client Haparanda or Alysbyn or Lulea or Pitea or Kiruna or Gallivare or Jokkmokk or 41 feedback") Arjeplog or Arvidsjaur).ti,ab,kw. 42 "care 43 44 experience*" Norway geographic terms 45 "patient (Nordland or Alstahaug or Andoy or Ballangen or Bejarn or Bindal or (Bo not on October 1, 2021 by guest. Protected copyright. 46 dissatisfaction (“breast oncoplasty” or “biological osteosynthesis” or “Barrett's oesophagus” 47 " 48 or “buccalised occlusion”)) or Bodo or Bronnoy or Donna or Evenes or 49 "Perceived Fauske or Flakstad or Gildeskal or Grane or Hadsel or Hamaroy or 50 health care" Hattfjelldal or Hemnes or Heroy or Leirfjord or Londingen or Luroy or Meloy 51 "Perceived or Moskenes or Narvik or Nesna or Oksnes or Rana or Rodoy or Rost or 52 healthcare" Saltdal or Somna or Sorfold or Sortland or Steigen or Tjeldsund or Traena or 53 (perception Tysfjord or Vaeroy or Vagan or Vefsn or Vega or Vestvagoy or Vevelstad or 54 Troms or Balsfjord or Bardu or (Berg not “balance scale”) or Dyroy or 55 and "health 56 care") “Gaivuotna-Kafjord” or Gratangen or Harstad or Ibestad or Karlsoy or 57 Kvaefjord or Kvaenangen or Lavangen or Lenvik or Lyngen or Malsely or 58 Nordreisa or Salangen or Skanland or Skjervoy or Sorreisa or Storfjord or 59 Torsken or Tranoy or Tromso or Finnmark or Alta or Berlevag or Batsfjord or 60

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4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 (perception Gamvik or Hammerfest or Hasvik or Karasjohka or Karasjok or 6 and Guovdageaidnu or Kautokeino or Kvalsund or Lebesby or Loppa or Masoy or 7 "healthcare") Unjarga or Nesseby or Nordkapp or Porsanger or Porsangu or Porsanki or 8 "Patient Sor-Varanger or Deatnu or Tana or Vadso or Vardo or Svalbard or 9 perspective" Longyearbyen or Ny-Alesund or Barentsburg or Pyramiden or 10 Sveagruva).ti,ab,kw. 11 (quality 12 experienc*) 13 Finland geographic terms 14 (Oulu or Kainuu or Hyrynsalmi or Kajaani or Kuhmo or Paltamo or Puolanka 15 or Ristijarvi or Sotkama or Suomussalmi or Northern Ostrobothnia or 16 17 Alavieska or Haapajarvi or Haapevesi or Hailuoto or Li or Kalajoki or Kempele 18 or KuusamoFor orpeer Karsamaki review or Liminka or Lumijoki only or Merijarvi or Muhos or 19 Nivala or Oulainen or Pudasjarvi or Pyhajoki or Pyhajarvi or Pyhanta or Raahe 20 or Reisjarvi or Sievi or Siikajoki or Siikalatva or Taivalkoski or Tyrnava or 21 Utajarvi or Vaala or Ylivieska or Lapland or Kemijarvi or Pelkosenniemi or 22 Posio or Salla or Savukoski or Kemi or Keminmaa or Simo or Tervola or 23 Tornio or Inari or Sodankyla or Utsjoki or Ranua or Rovaniemi or Pello or 24 25 Ylitornio or Kolari or Muonio or Kittila or Enontekio).ti,ab,kw. 26 27 Russia geographic terms 28 29 ("Kola Peninsula" or Kamchatka or Arkhangelsk or Sakha or Karelia or Komi 30 or Franz Josef or "Kolguyev Island" or "Novaya Zemlya" or "Bely Island" or 31 "Shokalsky Island" or "Vilkitsky Island" or "Oleniy Island" or "Zapovednik 32 Islands" or "Vize Island" or "Ushakov Island" or "Severnaya Island" or 33 "Bolshoy Begichev Island" or "New Siberian Islands" or "Medvyezhi or 34 Islands" or "Ayon Island" or "Wrangel Island" or "Big Diomede").ti,ab,kw. 35 36 37 Circumpolar cities http://bmjopen.bmj.com/ 38 ((Anchorage not teeth) or Juneau or Whitehorse or Yellowknife or Iqaluit or 39 Nuuk or Torshavn or Reykjavik or Murmansk or Petrozavodsk or "Naryan- 40 41 Mar" or Syktyvkar or "Novy Urengoy" or Salekhard or Surgut or "Khanty- 42 Mansiysk" or Dudinka or Tura or Yakutsk or Magadan or Palana or 43 Anadyr).ti,ab,kw.] 44 45 on October 1, 2021 by guest. Protected copyright. 46 Copy-pastable search string 47 48 49 (("patient experience*" or "patient satisfaction" or "PREM#" or (health and "user satisfaction") or 50 "patient input" or (health and "user feedback") or (health and "consumer satisfaction") or (health and 51 "consumer feedback") or (health and "client satisfaction") or (health and "client feedback") or "care 52 experience*" or "patient dissatisfaction" or "Perceived health care" or "Perceived healthcare" or 53 (perception and "health care") or (perception and "healthcare") or "Patient perspective" or (quality 54 adj3 experienc*)).af.]) AND (((circumpolar or polar or arctic or greenland or Alaska or iceland or 55 56 ((north* or rural or remote or polar or arctic or circumpolar) adj3 (norway or sweden or finland or 57 Russia)) or "Barents region").ti,ab,kw.) OR ((inuit or sami or saami or "First Nation#" or metis or 58 inuk or yup'ik or Inuviat* or Yupik* or Aleut* or Inupia* or "Alaska Native#" or dene or gwichin or 59 gwich'in or Athabas*).ti,ab,kw.) OR ((nunavut or nunavik or nunatsiavut or inuvialuit or yukon or 60

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4 northwest territories or nunavummiut or kitikmeot or qitirmiut or kivalliq or qikiqtani or baffin or BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 kuujjuaq).ti,ab,kw.) OR ((Jamtland or (Berg not “balance scale”) or Bracke or Krokom or Ragunda 7 or Stromsund or (Are adj1 (Jamtland or Sweden or Sverige)) or Ostersund or Harjedalen or 8 Vasternorrland or Sundsvallor or Timra or Ange or Harnosand or “Kramfors Solleftea” or 9 Ornskoldsvik or Vasterbotten or Dorotea or Lycksele or Mala or Sorsele or Storuman or Vilhelmina 10 or Asele or Norsjo or Robertsfors or Skelleftea or Umea or Vindeln or Vannas or Bjurholm or 11 Nordmaling or Norrbotten or Pajala or Overtornea or Overkalix or Boden or Kalix or Haparanda or 12 13 Alysbyn or Lulea or Pitea or Kiruna or Gallivare or Jokkmokk or Arjeplog or Arvidsjaur).ti,ab,kw.) 14 OR ((Nordland or Alstahaug or Andoy or Ballangen or Bejarn or Bindal or (Bo not (“breast 15 oncoplasty” or “biological osteosynthesis” or “Barrett's oesophagus” or “buccalised occlusion”)) or 16 Bodo or Bronnoy or Donna or Evenes or Fauske or Flakstad or Gildeskal or Grane or Hadsel or 17 Hamaroy or Hattfjelldal or Hemnes or Heroy or Leirfjord or Londingen or Luroy or Meloy or 18 Moskenes or Narvik orFor Nesna or peer Oksnes or Ranareview or Rodoy or onlyRost or Saltdal or Somna or Sorfold or 19 Sortland or Steigen or Tjeldsund or Traena or Tysfjord or Vaeroy or Vagan or Vefsn or Vega or 20 21 Vestvagoy or Vevelstad or Troms or Balsfjord or Bardu or (Berg not “balance scale”) or Dyroy or 22 “Gaivuotna-Kafjord” or Gratangen or Harstad or Ibestad or Karlsoy or Kvaefjord or Kvaenangen or 23 Lavangen or Lenvik or Lyngen or Malsely or Nordreisa or Salangen or Skanland or Skjervoy or 24 Sorreisa or Storfjord or Torsken or Tranoy or Tromso or Finnmark or Alta or Berlevag or Batsfjord 25 or Gamvik or Hammerfest or Hasvik or Karasjohka or Karasjok or Guovdageaidnu or Kautokeino or 26 Kvalsund or Lebesby or Loppa or Masoy or Unjarga or Nesseby or Nordkapp or Porsanger or 27 Porsangu or Porsanki or Sor-Varanger or Deatnu or Tana or Vadso or Vardo or Svalbard or 28 29 Longyearbyen or Ny-Alesund or Barentsburg or Pyramiden or Sveagruva).ti,ab,kw.) OR ((Oulu or 30 Kainuu or Hyrynsalmi or Kajaani or Kuhmo or Paltamo or Puolanka or Ristijarvi or Sotkama or 31 Suomussalmi or Northern Ostrobothnia or Alavieska or Haapajarvi or Haapevesi or Hailuoto or Li or 32 Kalajoki or Kempele or Kuusamo or Karsamaki or Liminka or Lumijoki or Merijarvi or Muhos or 33 Nivala or Oulainen or Pudasjarvi or Pyhajoki or Pyhajarvi or Pyhanta or Raahe or Reisjarvi or Sievi 34 or Siikajoki or Siikalatva or Taivalkoski or Tyrnava or Utajarvi or Vaala or Ylivieska or Lapland or 35 36 Kemijarvi or Pelkosenniemi or Posio or Salla or Savukoski or Kemi or Keminmaa or Simo or Tervola 37 or Tornio or Inari or Sodankyla or Utsjoki or Ranua or Rovaniemi or Pello or Ylitornio or Kolari or http://bmjopen.bmj.com/ 38 Muonio or Kittila or Enontekio).ti,ab,kw.) OR (("Kola Peninsula" or Kamchatka or Arkhangelsk or 39 Sakha or Karelia or Komi or Franz Josef or "Kolguyev Island" or "Novaya Zemlya" or "Bely Island" 40 or "Shokalsky Island" or "Vilkitsky Island" or "Oleniy Island" or "Zapovednik Islands" or "Vize 41 Island" or "Ushakov Island" or "Severnaya Island" or "Bolshoy Begichev Island" or "New Siberian 42 Islands" or "Medvyezhi or Islands" or "Ayon Island" or "Wrangel Island" or "Big 43 44 Diomede").ti,ab,kw.) OR (((Anchorage not teeth) or Juneau or Whitehorse or Yellowknife or Iqaluit 45 or Nuuk or Torshavn or Reykjavik or Murmansk or Petrozavodsk or "Naryan-Mar" or Syktyvkar or on October 1, 2021 by guest. Protected copyright. 46 "Novy Urengoy" or Salekhard or Surgut or "Khanty-Mansiysk" or Dudinka or Tura or Yakutsk or 47 Magadan or Palana or Anadyr).ti,ab,kw.]) 48 49 50 51 52 53 54 55 56 57 58 59 60

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1 2 3 4 5 6 7 Author Year Title Language Study Design Method 1 Method 2 Method 3 Method 4 Country 1 Country 2 Country 3 Reason for Seeking Treatment 1 Telehealth Indigenous values Rural/remote Climate Change 8 Aagaard 2017 Patient involvement in healthcare professional practice - a question about knowledge. English Qualitative Participant Text analysis Focus Interview Greenland Cancer FALSE TRUE TRUE FALSE 9 observation groups 10 Afifi, et al. 2005 Perceived need and help-seeking for mental health problems among Canadian provinces English Quantitative Survey Canada Mental Health/Addiction FALSE FALSE TRUE FALSE 11 and territories 12 Aléx, et al. 2013 Being cold when injured in a cold environment - Patients' experiences English Qualitative Interview Sweden Emergency FALSE FALSE FALSE FALSE 13 Alex, et al. 2013 Patients' experiences of cold exposure during ambulance care. English Qualitative Participant Interview Sweden Emergency FALSE FALSE FALSE FALSE 14 observation 15 Anden, et al. 2010 What happened? GPs' perceptions of consultation outcomes and a comparison with the English Quantitative Survey Sweden PHC FALSE FALSE FALSE FALSE 16 experiences of their patients. 17 Arnadottir, et al. 2012 Evaluation of therapy services with the Measure of Processes of Care (MPOC-20): The English Mixed-Methods Focus groups Survey Iceland Disability FALSE FALSE TRUE FALSE 18 perspectives of Icelandic parents of children with physical disability 19 Arnaert & Schaack 2006 Cultural awareness of Inuit patients' experiences with emergency nursing care. English Qualitative Interview Canada Emergency FALSE TRUE TRUE FALSE 20 Askham, et al. 2010 The information and support needs of Faroese women hospitalised with an acute coronary English Qualitative Interview Faroe Islands Emergency FALSE FALSE FALSE FALSE 21 syndrome 22 23 Baldursdottir & Jonsdottir 2002 The importance of nurse caring behaviors as perceived by patients receiving care at an English Quantitative Survey Iceland Emergency FALSE FALSE FALSE FALSE 24 emergency department. 25 Bekkelund & Salvesen 2006 Patient satisfaction with assessment of headache in specialist centres Norwegian Quantitative Survey Norway Headache FALSE FALSE FALSE FALSE 26 Bekkelund, et al. 2014 Patient satisfaction with conventional, complementary, and alternative treatment for English Quantitative Survey Norway Headache FALSE FALSE FALSE FALSE 27 cluster headache in a Norwegian cohort. 28 Biering & Jensen 2011 The concept of patient satisfaction in adolescent psychiatric care: A qualitative study English Qualitative Interview Iceland Mental Health/Addiction FALSE FALSE FALSE FALSE 29 Bird, et al. 2008 Living with diabetes on Baffin Island: Inuit storytellers share their experiences English Qualitative Interview Canada Diabetes FALSE TRUE TRUE TRUE 30 Blix & Hamran 2017 “They take care of their own”: healthcare professionals’ constructions of Sami persons English Qualitative Focus groups Norway Geriatric Health FALSE TRUE TRUE FALSE 31 with dementia and their families’ reluctance to seek and accept help through attributions to 32 multiple contexts 33 Boman, et al. 2014 Robot-assisted remote echocardiographic examination and teleconsultation: A English Quantitative Survey Sweden PHC TRUE FALSE TRUE FALSE 34 randomized comparison of time to diagnosis with standard of care referral approach 35 Bragadottir 1999 A descriptive study of the extent to which self-perceived needs of parents are met in English Quantitative Survey Iceland Pediatrics FALSE FALSE FALSE FALSE 36 paediatric units in Iceland. 37 Cano & Foster 2016 "They made me go through like weeks of appointments and everything": Documenting English Qualitative Interview Canada Maternal Health FALSE FALSE TRUE FALSE 38 women's experiences seeking abortion care in Yukon territory, Canada. 39 Daerga, et al. 2012 The confidence in health care and social services in northern Sweden-A comparison English Quantitative Survey Sweden PHC FALSE TRUE FALSE FALSE 40 between reindeer-herding Sami and the non-Sami majority population. 41 Dagsvold, et al. 2015 What can we talk about, in which language, in what way and with whom? Sami patients’ English Qualitative Interview Norway Mental Health/Addiction FALSE TRUE FALSE FALSE

BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from For peer review only 42 experiences of language choice and cultural norms in mental health treatment 43 44 DeCourtney 1998 Alaska Native community assessment: health care services, knowledge of health issues, English Quantitative Survey USA General FALSE FALSE TRUE FALSE 45 and health education. 46 DeMay 2003 The experience of being a client in an Alaska public health nursing home visitation English Qualitative Text analysis USA Maternal Health FALSE FALSE FALSE FALSE 47 program. 48 Driscoll, et al. 2010 Assessing the influence of health on rural outmigration in Alaska English Qualitative Interview USA General FALSE FALSE TRUE FALSE 49 Elsass, et al. 1994 [Greenlanders in hospital. An interview study of communication between patients and Danish Qualitative Interview Greenland General FALSE TRUE TRUE FALSE 50 therapists, satisfaction and therapeutic preferences]. 51 Fjellman-Wiklund, et al. 2016 Access to rehabilitation: patient perceptions of inequalities in access to specialty pain English Qualitative Interview Sweden Pain FALSE FALSE FALSE FALSE 52 rehabilitation from a gender and intersectional perspective. 53 Fotaki 2006 Users' perceptions of health care reforms: Quality of care and patient rights in four regions English Quantitative Survey Russia General FALSE FALSE FALSE FALSE 54 in the Russian Federation 55 Franzen, et al. 2008 Injured road users' experience of care in the emergency department. English Quantitative Survey Sweden Emergency FALSE FALSE FALSE FALSE 56 Fraser & Nadeau 2015 Experience and representations of health and social services in a community of Nunavik English Qualitative Interview Canada General FALSE TRUE TRUE FALSE 57 58 Fridfinnsdottir 1997 Icelandic women's identifications of stressors and social support during the diagnostic English Qualitative Interview Iceland Cancer FALSE FALSE FALSE FALSE 59 phase of breast cancer 60 Garcia, et al. 2014 A pharmacist-led follow-up program for patients with coronary heart disease in North English Qualitative Interview Norway Pharmacy FALSE FALSE FALSE FALSE Norway--a qualitative study exploring patient experiences. Garratt, et al. 2010 The Patient Experiences Questionnaire for Out-of-Hours Care (PEQ-OHC): data quality, English Quantitative Survey Norway PHC FALSE FALSE FALSE FALSE reliability, and validity. Gottfredsdottir, et al. 2016 Content of antenatal care: Does it prepare women for birth?. English Quantitative Survey Iceland Maternal Health FALSE FALSE FALSE FALSE Gustafsson, et al. 2016 Influence of self-care advice on patient satisfaction and healthcare utilization. English Quantitative Survey Sweden PHC TRUE FALSE FALSE FALSE Gustafsson, et al. 2019 Patient Satisfaction With Telephone Nursing: A Call for Calm, Clarity, and Competence. English Qualitative Text analysis Sweden General TRUE FALSE FALSE FALSE

Gåfvels & Lithner 1996 Insulin-treated diabetic patients: Use of, experience of and attitudes to diabetes care English Quantitative Survey Sweden Diabetes FALSE FALSE TRUE FALSE Hagensen, et al. 2018 The struggle against perceived negligence. A qualitative study of patients' experiences of English Qualitative Interview Norway General FALSE FALSE FALSE FALSE adverse events in Norwegian hospitals. Hagopian, et al. 2000 The use of community surveys for health planning: the experience of 56 northwest rural English Quantitative Survey USA General FALSE FALSE TRUE FALSE communities. Haines, et al. 2013 The role of women's attitudinal profiles in satisfaction with the quality of their antenatal English Quantitative Survey Sweden Maternal Health FALSE FALSE FALSE FALSE and intrapartum care. http://bmjopen.bmj.com/ Halldorsdottir & Karlsdottir 1996 Empowerment or discouragement: women's experience of caring and uncaring encounters English Qualitative Interview Iceland Maternal Health FALSE FALSE FALSE FALSE during childbirth. Hanrahan 2002 Identifying the needs of Innu and Inuit patients in urban health settings in Newfoundland English Qualitative Focus groups Interview Canada General FALSE TRUE TRUE FALSE and Labrador. Hanssen 2013 The influence of cultural background in intercultural dementia care: Exemplified by Sami English Qualitative Interview Norway Geriatric Health FALSE TRUE FALSE FALSE patients. Hanssen & Kuven 2016 Moments of joy and delight: the meaning of traditional food in dementia care. English Qualitative Interview Norway Geriatric Health FALSE TRUE FALSE FALSE Heiberg & Skurtveit 2005 Voices of women in North-West Russia - About maternity care Norwegian Quantitative Survey Russia Maternal Health FALSE FALSE FALSE FALSE on October 1, 2021 by guest. Protected copyright. Hildingsson, et al. 2011 Fathers' birth experience in relation to midwifery care. English Quantitative Survey Sweden Maternal Health FALSE FALSE FALSE FALSE Hiratsuka, et al. 2013 Patient and provider perspectives on using telemedicine for chronic disease management English Qualitative Focus groups USA PHC TRUE TRUE TRUE FALSE among Native Hawaiian and Alaska Native people. Hjorleifsdottir, et al. 2008 Living with cancer and perception of care: Icelandic oncology outpatients, a qualitative English Qualitative Interview Iceland Cancer FALSE FALSE FALSE FALSE study. Hjörleifsdóttir, et al. 2010 Satisfaction with care in oncology outpatient clinics: Psychometric characteristics of the English Quantitative Survey Iceland Cancer FALSE FALSE FALSE FALSE Icelandic EORTC IN-PATSAT32 version Hogberg, et al. 2008 Cesarean by choice? Empirical study of public attitudes. English Quantitative Survey Sweden Maternal Health FALSE FALSE FALSE FALSE Holtan 1998 Patient reactions to specialist telemedicine consultations--a sociological approach. English Qualitative Interview Norway Surgery TRUE FALSE FALSE FALSE Hounsgaard, et al. 2013 Women's perspectives on illness when being screened for cervical cancer. English Qualitative Focus groups Interview Greenland Cancer FALSE TRUE FALSE FALSE

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1 2 3 4 5 6 7 Ingadottir, et al. 2014 The fulfilment of knowledge expectations during the perioperative period of patients English Quantitative Survey Finland Iceland Sweden Surgery FALSE FALSE FALSE FALSE 8 undergoing knee arthroplasty -- a Nordic perspective. 9 Jóhannesdóttir & Hjörleifsdóttir 2018 Communication is more than just a conversation: family members' satisfaction with end-of-English Qualitative Interview Iceland Geriatric Health FALSE FALSE FALSE FALSE 10 life care 11 Jonsdottir, et al. 2015 Chronic pain-related patient-provider communication: The significance of health related English Quantitative Survey Iceland Pain FALSE FALSE FALSE FALSE 12 quality of life and satisfaction 13 Jonsdottir, et al. 2016 Patients' Perception of Chronic-Pain-Related Patient-Provider Communication in Relation English Quantitative Survey Iceland Pain FALSE FALSE FALSE FALSE 14 to Sociodemographic and Pain-Related Variables: A Cross-Sectional Nationwide Study. 15 16 Klausen, et al. 2017 Shared decision making from the service users’ perspective: A narrative study from English Qualitative Interview Norway Mental Health/Addiction FALSE FALSE TRUE FALSE 17 community mental health centers in northern Norway. 18 Kuznetsov, et al. 2013 Hopelessness as a basis for tuberculosis diagnostic delay in the Arkhangelsk region: A English Qualitative Focus groups Russia Communicable Disease FALSE FALSE TRUE FALSE 19 grounded theory study 20 Lanier, et al. 1999 Pap prevalence and cervical cancer prevention among Alaska Native women. English Qualitative Interview USA Cancer FALSE FALSE FALSE FALSE 21 Lian & Wilsgaard 2004 Patient satisfaction in general practice before and after the introduction of a list patient Norwegian Quantitative Survey Norway PHC FALSE FALSE TRUE FALSE 22 system 23 Lindberg, et al. 2009 Parents' experiences of using videoconferencing as a support in early discharge after English Mixed-Methods Interview Survey Sweden Maternal Health TRUE FALSE TRUE FALSE 24 childbirth. 25 Ljung, et al. 2013 Patient experiences of a theory-based lifestyle-focused group treatment in the prevention English Qualitative Interview Sweden Diabetes FALSE FALSE FALSE FALSE 26 of cardiovascular diseases and type 2 diabetes. 27 Lovgren, et al. 1998 The view of caring among patients and personnel. English Quantitative Survey Sweden General FALSE FALSE FALSE FALSE 28 Lovgren, et al. 2002 Effects of an implemented care policy on patient and personnel experiences of care. English Quantitative Survey Sweden PHC FALSE FALSE FALSE FALSE 29 30 Lundgren, et al. 2009 Long-term memories and experiences of childbirth in a Nordic context-A secondary English Qualitative Interview Finland Iceland Sweden Maternal Health FALSE FALSE FALSE FALSE 31 analysis. 32 Löve, et al. 2018 Trading autonomy for services: Perceptions of users and providers of services for disabled English Qualitative Interview Iceland Disability FALSE FALSE FALSE FALSE 33 people in Iceland 34 Mendez, et al. 2013 The use of remote presence for health care delivery in a northern Inuit community: a English Mixed-Methods Interview Survey Canada General TRUE TRUE TRUE FALSE 35 feasibility study. 36 Mielonen, et al. 2000 Psychiatric inpatient care planning via telemedicine English Quantitative Survey Finland Mental Health/Addiction TRUE FALSE TRUE FALSE 37 Montgomery-Andersen, et al. 2010 There was no other way things could have been.' Greenlandic women's experiences of English Qualitative Interview Greenland Maternal Health FALSE TRUE TRUE FALSE 38 referral and transfer during pregnancy. 39 Moseng 2000 Teledermatology - The north Norwegian experience Norwegian Quantitative Survey Norway Dermatology TRUE FALSE TRUE FALSE 40 Muller, et al. 2017 Headache patients' satisfaction with telemedicine: a 12-month follow-up randomized non- English Quantitative Survey Norway Headache TRUE FALSE TRUE FALSE 41 inferiority trial.

BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from For peer review only 42 Nystad, et al. 2008 Sami speakers are less satisfied with general practitioners' services. English Quantitative Survey Norway PHC FALSE TRUE TRUE FALSE 43 Oikarinen, et al. 2000 Patient satisfaction with health care services via videoconferencing English Quantitative Survey Finland General TRUE FALSE FALSE FALSE 44 Olsen & Fylkesnes 1991 The health survey in Finnmark--how is the population satisfied with community health Norwegian Quantitative Survey Norway General FALSE FALSE TRUE FALSE 45 services? 46 Olsen & Fylkesnes 1993 The health survey in Finnmark--satisfaction with hospital services Norwegian Quantitative Survey Norway General FALSE FALSE TRUE FALSE 47 O'Neil 1989 The Cultural and Political Context of Patient Dissatisfaction in Cross Cultural Clinical English Qualitative Participant Text analysis Focus Interview Canada General FALSE TRUE TRUE FALSE 48 Encounters: A Canadian Inuit Study observation groups 49 Oosterveer & Young 2015 Primary health care accessibility challenges in remote indigenous communities in English Qualitative Interview Canada PHC FALSE TRUE TRUE TRUE 50 Canada's North. 51 Parret 2012 Meeting the needs of breast cancer survivors in Alaska: Survivors' and healthcare English Mixed-Methods Interview Survey USA Cancer FALSE FALSE TRUE FALSE 52 providers' perspectives. 53 Pedersen & Holand 1995 Tele-endoscopic otorhinolaryngological examination: preliminary study of patient English Quantitative Survey Norway Surgery TRUE FALSE TRUE FALSE 54 satisfaction. 55 Pellikka, et al. 2003 Patients' views of good nursing care in an emergency unit Finnish Quantitative Survey Finland Emergency FALSE FALSE FALSE FALSE 56 Quick & Bashshur 1991 Three perspectives on community health aides: surveys of health aides, consumers and English Quantitative Survey USA General FALSE FALSE TRUE FALSE 57 providers in western Alaska. 58 Risberg, et al. 1997 Communicating with and treating cancer patients: how does the use of non-proven English Quantitative Survey Norway Cancer FALSE FALSE FALSE FALSE 59 therapies and patients' feeling of mental distress influence the interaction between the 60 patient and the hospital staff. Rotvold, et al. 2003 Telemedicine screening for diabetic retinopathy: staff and patient satisfaction. English Mixed-Methods Interview Survey Norway Diabetes TRUE FALSE TRUE FALSE Sandlund & Hansson 1999 Patient satisfaction in a comprehensive sectorized psychiatric service: Study of a 1-year- English Quantitative Survey Sweden Mental Health/Addiction FALSE FALSE FALSE FALSE treated incidence cohort Sigurdardottir, et al. 2017 The importance of family support in pediatrics and its impact on healthcare satisfaction. English Quantitative Survey Iceland PHC FALSE FALSE FALSE FALSE Sigurdardottir, et al. 2017 The predictive role of support in the birth experience: A longitudinal cohort study English Quantitative Survey Iceland Maternal Health FALSE FALSE FALSE FALSE Sigurthardottir 1996 Satisfaction among ambulatory surgery patients in two hospitals in Iceland. English Quantitative Survey Iceland Surgery FALSE FALSE FALSE FALSE Sjoblom, et al. 2014 Creating a safe haven-women's experiences of the midwife's professional skills during English Mixed-Methods Survey Text analysis Norway Iceland Sweden Maternal Health FALSE FALSE FALSE FALSE planned home birth in four Nordic countries. Skär & Söderberg 2018 Patients’ complaints regarding healthcare encounters and communication English Mixed-Methods Survey Text analysis Sweden General FALSE FALSE FALSE FALSE

Snorradottir, et al. 2014 [Patient satisfaction with care and interaction with staff in the Acute Cardiac Unit at Icelandic Quantitative Survey Iceland Emergency FALSE FALSE FALSE FALSE Landspitali - The National University Hospital of Iceland] Sorlie & Nergard 2005 Treatment satisfaction and recovery in Saami and Norwegian patients following English Quantitative Survey Norway Mental Health/Addiction FALSE TRUE FALSE FALSE psychiatric hospital treatment: a comparative study. http://bmjopen.bmj.com/ Svavarsdóttir, et al. 2013 A Holistic View in Psychiatric Rehabilitation: The Effects of Structure in Psychiatric English Mixed-Methods Survey Interview Iceland Mental Health/Addiction FALSE FALSE FALSE FALSE Institutions Thorsteinsson 2002 The quality of nursing care as perceived by individuals with chronic illnesses: The magical English Qualitative Interview Iceland PHC FALSE FALSE FALSE FALSE touch of nursing Traulsen, et al. 2002 The lay user perspective on the quality of pharmaceuticals, drug therapy and pharmacy English Qualitative Focus groups Iceland Pharmacy FALSE FALSE TRUE FALSE services--results of focus group discussions. Trumpy 2002 Should hospital patients get copies of their medical reports? Norwegian Qualitative Interview Norway Surgery FALSE FALSE FALSE FALSE on October 1, 2021 by guest. Protected copyright. Wahlberg, et al. 2016 Impact of referral templates on patient experience of the referral and care process: a English Quantitative Survey Norway Surgery FALSE FALSE FALSE FALSE cluster randomised trial. Wetterhall, et al. 2011 Cultural context in the effort to improve oral health among Alaska Native people: the English Mixed-Methods Interview Survey USA Dental FALSE TRUE TRUE TRUE dental health aide therapist model. Worthington, et al. 2010 HIV testing experiences of Aboriginal youth in Canada: service implications. English Quantitative Survey Canada Communicable Disease FALSE TRUE FALSE FALSE Zoëga, et al. 2015 Quality Pain Management in the Hospital Setting from the Patient's Perspective English Quantitative Survey Iceland Pain FALSE FALSE FALSE FALSE

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Patient experience studies in the circumpolar region: a scoping review

Journal: BMJ Open ManuscriptFor ID peerbmjopen-2020-042973.R1 review only Article Type: Original research

Date Submitted by the 25-Aug-2020 Author:

Primary Subject Health services research Heading:

Secondary Subject Heading: Public health, Patient-centred medicine http://bmjopen.bmj.com/

Quality in health care < HEALTH SERVICES ADMINISTRATION & Keywords: MANAGEMENT, PUBLIC HEALTH, QUALITATIVE RESEARCH, PRIMARY CARE

on October 1, 2021 by guest. Protected copyright.

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1 2 3 1 Patient experience studies in the circumpolar region: a scoping review

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 2 Christine Ingemann*, Centre for Public Health in Greenland, National Institute of Public 7 3 Health, University of Southern Denmark, Studiestræde 6, 1455 Copenhagen, Denmark; 8 4 Greenland Centre for Health Research, Institute of Nursing and Health Research, 9 10 5 Ilisimatusarfik – University of Greenland, Nuuk, Greenland; [email protected]; 11 6 +4565507822; ORCID: 0000-0002-1390-4952 12 7 13 14 8 Nathaniel Fox Hansen*, Tufts University School of Medicine, Boston, Massachusetts, 15 9 United States; ORCID: 0000-0002-3368-9938 16 10 17 18 11 Nanna Lund Hansen,For Centre peer for Public review Health in Greenland, only National Institute of Public 19 12 Health, University of Southern Denmark, Copenhagen, Denmark 20 13 21 22 14 Kennedy Jensen, Geisel School of Medicine at Dartmouth, Hanover, New Hampshire, 23 15 United States 24 16 25 26 17 Christina Viskum Lytken Larsen, Centre for Public Health in Greenland, National 27 18 Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark; 28 19 Greenland Centre for Health Research, Institute of Nursing and Health Research, 29 30 20 Ilisimatusarfik – University of Greenland, Nuuk, Greenland; ORCID: 0000-0002-6245- 31 21 4222 32 22 33 23 Susan Chatwood, University of Alberta, School of Public Health, Edmonton, 34 35 24 Yellowknife, Canada; 36 25 37 26 *corresponding authors http://bmjopen.bmj.com/ 38 39 27 Christine Ingemann ([email protected]) and Nathaniel Fox Hansen 40 28 ([email protected]) contributed equally to this paper. 41 29 42 43 30 Word count: 4,897 44 31 45 on October 1, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 1

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1 2 3 33 Patient experience studies in the circumpolar region: a scoping review

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 34 KEYWORDS 7 8 35 patient experience, patient satisfaction, circumpolar, arctic, scoping review, Indigenous, 9 10 36 rural healthcare, telehealth 11 12 37 13 14 38 ABSTRACT 15 16 39 Objectives: Patient experiences with health systems constitute a crucial pillar of quality 17 18 40 care. Across the ForArctic, patients’peer interactions review with the healthcareonly system are influenced 19 20 41 by challenges of access, historical inequities, and social determinants. This scoping 21 42 review sought to describe the range and nature of peer-reviewed literature on patient 22 23 43 experience studies conducted within the circumpolar region. 24 25 44 Design: In a partnership between Danish/Greenlandic, Canadian, and American research 26 27 45 teams, a scoping review of published research exploring patient experiences in 28 29 46 circumpolar regions was undertaken. 30 31 47 Data Sources: Seven electronic databases were queried: MEDLINE, EMBASE, Scopus, 32 33 48 “Global Health 1910 to 2019 Week 11”, CINAHL, PsychInfo, and SveMed+. 34 35 49 Eligibility Criteria: Articles were eligible for inclusion if they a) took place in the 36 37 50 circumpolar region, b) reported patients’ perspective, and c) were focused primarimly on http://bmjopen.bmj.com/ 38 51 patient experiences with care, rather than satisfaction with treatment outcome. 39 40 41 52 Data Extraction and Synthesis: Title and abstract screening, full-text review, and data 42 53 extraction was conducted by four researchers. Bibliometric information such as 43 44 54 publication date and country of origin was extracted, as was information regarding study 45 on October 1, 2021 by guest. Protected copyright. 46 55 design, and whether or not the article contained results relevant to the themes of 47 48 56 Indigenous values, rural and remote context, telehealth, and climate change. Two 49 57 researchers then synthesized and characterized results relevant to these themes. 50 51 58 Results: Of the 2,824 articles initially found through systematic searches in seven 52 53 59 databases, 96 articles were included for data extraction. Findings from the review 54 55 60 included unique features related to Indigenous values, rural and remote health, telehealth, 56 57 61 and climate change. 58 59 60 2

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1 2 3 62 Conclusions: The review findings provide an overview of patient experiences measures

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 63 used in circumpolar nations. These findings can be used to inform health system 6 7 64 improvement based on patient needs in the circumpolar context, as well as in other 8 65 regions that share common features. 9 10 11 66 12 13 67 ARTICLE SUMMARY 14 15 68 Strengths and limitations of this study 16 17 69  This scoping review represents the most comprehensive and detailed examination of 18 70 existing literatureFor on patient peer experiences review in the circumpolar only region. 19 20 21 71  Our focus on four core features of circumpolar-specific patient experiences 22 72 (Indigenous values, rural and remote, climate change, and telehealth) provides a clear 23 24 73 view of experience domains relevant to circumpolar populations, while allowing 25 26 74 bottom-up synthesis of themes. 27 28 75  A potential limitation of this study was that no external framework was used to guide 29 30 76 data analysis, which limits the ability of these findings to dialog directly with research 31 32 77 in this field. 33 34 78 35 36 79 INTRODUCTION 37 http://bmjopen.bmj.com/ 38 80 A growing body of research exploring patient experiences of care reveals that such 39 40 81 measures not only capture level of satisfaction with care but also correlate with important 41 1 42 82 metrics including clinical outcomes and patient safety. Targeted attempts to improve 43 83 patient experiences have led to quantitative improvements in health outcomes.2 44 45 84 Additionally, positive patient experiences have been linked to high satisfaction among on October 1, 2021 by guest. Protected copyright. 46 47 85 medical teams - a critical factor in the prevention of burnout and workforce attrition.3 48 49 86 The experiences of patients in health systems can be reflective of the challenges and 50 51 87 privileges they experience in daily life. Racial and ethnic minorities, as well as rural and 52 53 88 low-income populations continue to experience suboptimal health outcomes, due in part 54 89 to the effect of institutionalized racism and structural poverty on their ability to access 55 56 90 and receive quality healthcare.4 57 58 59 60 3

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1 2 3 91 Residents of the circumpolar north face these challenges as well, and while some northern

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 92 populations compare favourably with the respective national average in terms of mortality 6 7 93 rate for conditions such as diabetes, the relatively high rates of other conditions including 8 94 heart disease and self-inflicted injury indicate significant disparities in health promotion 9 10 95 and utilization in the circumpolar north.5 Furthermore, the unique characteristics of the 11 12 96 circumpolar region make the provision of quality healthcare especially challenging. Huot, 13 6 14 97 et al. previously identified four themes that were unique to access to care in northern 15 98 health systems: influence of physical geography, provider-related barriers, culture and 16 17 99 language, and the impact of systemic factors such as lack of funding. 18 For peer review only 19 100 A number of studies address similar themes, including one study of Sami patients in the 20 21 101 Norwegian healthcare system that found a culturally unsafe environment and lack of 22 23 102 interpreting services to be associated with patients receiving unequal access to health 24 103 information.7 Additionally, a study involving First Nations, Inuit, and Métis participants 25 26 104 in Canada showed how the legacy of colonialism as well as contemporary exposures to 27 28 105 culturally unsafe care impacted how engaged patients felt with their diabetes 29 8 30 106 management. 31 32 107 The circumpolar region is home to many Indigenous populations, where the unique 33 34 108 historical, environmental, and cultural dynamics contribute to the complexity of system- 35 109 wide evaluation of patient experiences in the region. The predominant approaches to 36 37 110 health system evaluation are rooted in a biomedical conception of health, though other http://bmjopen.bmj.com/ 38 39 111 approaches, such as postcolonial and traditional knowledge ideologies are beginning to 40 112 become incorporated into mainstream health systems analysis.9-12 41 42 43 113 Another defining feature of the circumpolar world is its sparse population distribution 44 114 and the predominance of communities situated in remote areas. This presents challenges 45 on October 1, 2021 by guest. Protected copyright. 46 115 to the provision of safe and accessible healthcare. One study of rheumatoid arthritis 47 48 116 patients in rural Canada found that travel distance as well as severe weather affecting 49 13 50 117 travel negatively impacted their healthcare experience. However, the challenge of 51 118 geographic remoteness also stimulates innovation; circumpolar areas are renowned for 52 53 119 their pioneering implementation of telehealth technologies.14 Expanding use of telehealth 54 15 16 55 120 for services such as chronic disease management and diagnostic imaging holds the 56 121 potential for transformative health system changes, but it also brings with it novel barriers 57 58 59 60 4

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1 2 3 122 to the assessment of patient experiences. The increasing reliance on telehealth in

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 123 circumpolar regions necessitates a review of patient experiences using these technologies. 6 7 124 The aim of this scoping review was to describe patient experience studies conducted 8 9 125 within the circumpolar region, with the goal of elucidating factors that influence patient 10 11 126 perceptions and utilization of health services. 12 13 127 14 15 128 METHODS 16 17 129 A scoping review with a thorough systematic search and screening process was 18 For peer review only 19 130 conducted. Though the search was planned in advance, no protocol was registered. Our 20 17 21 131 methodology was informed by the scoping methods devised by Arksey and O'Malley 22 132 and as such, our goal was to provide a broad overview of the extent and range of literature 23 24 133 relevant to patient experiences in circumpolar populations. Scoping reviews have been 25 26 134 successfully used to better understand health topics in circumpolar regions.18-20 Our work 27 28 135 does not assess the quality of included articles, but aims to provide a preliminary picture 29 136 of what has been published across Arctic regions with shared experiences. In this review, 30 31 137 analysis was conducted across dimensions of patient experiences related to the shared 32 33 138 features of Indigenous values, rural and remote geography, climate change, and 34 139 telehealth, as these categories are of particular importance to circumpolar health systems 35 36 140 given the specific challenges and characteristics of the circumpolar region. Publications 37 http://bmjopen.bmj.com/ 38 141 that did not address these categories were still included. This allowed for broad capture 39 40 142 of relevant publications and bottom-up synthesis of themes. 41 42 143 Patient and public involvement 43 44 144 No patient involved. 45 on October 1, 2021 by guest. Protected copyright. 46 145 Focus population 47 146 The focus population of the review was the population living in the circumpolar region, 48 49 147 which is home to many Indigenous populations.21 The circumpolar region was defined 50 51 148 geographically by definitions used in an international circumpolar health systems 52 14 53 149 comparison. Additional regions considered circumpolar were made based on 54 150 Indigenous regions represented through international forums such as the Arctic Council.22 55 56 151 A circumpolar health sciences librarian made some alterations to the boundaries used for 57 58 152 circumpolar geography in the search (see figure 1). 59 60 5

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1 2 3 153

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 154 Figure 1. Map of the circumpolar North and its regions. Map by Winfried Dallmann, 6 7 155 Norwegian Polar Centre. 8 9 10 156 11 12 157 Search strategy 13 14 158 Preliminary searches were conducted by both the American/Canadian team and the 15 159 Danish/Greenlandic team, before combining search terms and refining them in 16 17 160 collaboration with the librarians. This lead to a comprehensive search syntax based on 18 For peer review only 19 161 the two key concepts, namely ‘patient experience’ (searched in ‘all fields’) and 20 21 162 ‘circumpolar region/population’ (searched in ‘title, abstract, and keywords’). The full 22 163 search strings are available in supplement 1. 23 24 25 164 Searches in seven electronic databases were conducted on March 27th, 2019: MEDLINE, 26 165 EMBASE, Scopus, “Global Health 1910 to 2019 Week 11”, CINAHL, PsychInfo, and 27 28 166 SveMed+. Only in the database SveMed+ a small adjustment of the search string was 29 30 167 necessary to be applied in the search machine. The search had no limited timeframe. 31 32 168 33 34 169 Screening and selection process 35 36 170 The search result of the databases was imported to the online review program 37 23 http://bmjopen.bmj.com/ 38 171 Covidence, where duplicates were screened and excluded by the program and an 39 172 additional hand-search for duplicates was performed. The whole screening process of the 40 41 173 review was conducted in Covidence by four researchers under the supervision of two 42 43 174 senior advisors. 44 45 175 Eligibility criteria were developed for the title and abstract screening, and the refined for on October 1, 2021 by guest. Protected copyright. 46 47 176 the full-text screening. In the title and abstract screening, articles were eligible if: 48 49 177 (a) Study participants included northern or Indigenous populations. 50 51 178 (b) Studies reported the patient perspective. 52 53 179 (c) Studies on all areas of patient experiences in the healthcare system from a specific 54 55 180 illness to health promotion activities, excluding perceptions of health research and 56 57 181 specific treatment outcome. 58 59 60 6

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1 2 3 182 For the full text screening criteria were made more explicit, and articles were excluded

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 183 if: 6 7 184 (a) The study did not take place in the circumpolar region or focus specifically on 8 9 185 care experience of circumpolar population 10 11 186 (b) Less than 5% of study participants were from the circumpolar region. 12 13 187 (c) Patient experience pertained to outcome rather than care experience. 14 15 16 188 (d) The study failed to directly measure patient experiences. 17 18 189 In the full-text screening,For peer the full-text review of 10 articles wereonly not accessible, and original 19 20 190 authors and journals could not be reached, therefore these articles were excluded. 21 22 191 Extracted data included bibliometric information, study design, method, location, reason 23 192 for seeking treatment, general themes from each article, and whether or not the article had 24 25 193 a focus in Indigenous values, or rural and remote geography, climate change, and 26 27 194 telehealth. These latter categories were selected because of their special relevance to the 28 29 195 health experiences of circumpolar populations. Two independent libriarians conducted an 30 196 external validation of the literature search. Each article was reviewed at every stage of 31 32 197 screening by two of the four reviewers. Extracted information to the Excel sheet was also 33 34 198 reviewed by a second person in the review team. The screening and selection process are 35 36 199 visualized in the PRISMA diagram in figure 2, and a corresponding PRISMA checklist 37 200 was completed during review (see supplement 2). http://bmjopen.bmj.com/ 38 39 201 40 41 42 202 Figure 2. PRISMA of the screening process. 43 44 203 45 on October 1, 2021 by guest. Protected copyright. 46 204 RESULTS 47 48 205 Bibliometric results 49 50 206 A total of 96 peer-reviewed articles were identified. The oldest study on patient 51 24 52 207 perspectives and experiences included in this review dates back to 1989. The number 53 208 of patient experience studies roughly doubled each decade thereafter (table 1). Three 54 55 209 quarters of the studies took place in Iceland (n=24),25-48 Norway (n=24),48-71 and Sweden 56 57 210 (n=22).16 46-48 72-89 19 studies were from North America; Canada (n=10)24 90-98 and Alaska 58 15 99-106 46 47 107-109 59 211 (USA) (n=9). Five or less studies took place in Finland (n=5), Greenland 60 7

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1 2 3 212 (n=4),110-113 Russia (n=3),114-116 and the Faroe Islands (n=1).117 Three articles included

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 213 study results from more than one country.46-48 Half of the identified studies applied a 6 16 7 214 quantitative research design with surveys as their only data collection method (n=47). 8 215 25-35 46 49-61 72-82 90 91 99-101 107-109 114 115 40 articles applied a solely qualitative research design 9 10 216 of which 29 used only interview as a method,36-42 47 62-69 83-85 92-96 102 103 110 111 117 six applied 11 12 217 only focus group discussions (n=4)15 43 70 116 or text analysis (n=2)86 104 as a method, and 13 24 87 97 112 113 14 218 five studies applied various qualitative methods. Nine studies applied mixed 15 219 methods (mix of quantitative and qualitative methods) of which six used a combination 16 17 220 of a survey and interviews,45 71 89 98 105 106 two survey and text analysis,48 88 and one survey 18 For peer review only 44 19 221 and focus group discussions. 20 21 222 22 23 223 Table 1. Bibliometric results of included articles. 24 25 26 Year of publication Country of study Study design 27 28 2010 - 2019 52 Iceland 24 Quantitative 47 29 30 2000 - 2009 27 Norway 24 Qualitative 40 31 32 1989 - 1999 17 Sweden 22 Mixed-Methods 9 33 34 Language of article Canada 10 Methods applied in study 35 36 English 87 Alaska (USA) 9 Survey 56 37 http://bmjopen.bmj.com/ 38 Norwegian 6 Finland 5 Interview 40 39 40 Danish 1 Greenland 4 Focus groups 9 41 Icelandic 1 Russia 3 Text analysis 6 42 43 Finnish 1 Faroe Islands 1 Participant observation 3 44 45 224 on October 1, 2021 by guest. Protected copyright. 46 47 225 Quantitative studies were the most commonly used study design in Sweden (n=13),16 48 48 49 226 72-82 Norway (n=13),49-61 and Iceland (n=12),25-35 48 and less than half of the studies in 50 51 227 these three Scandinavian countries applied qualitative methods (figure 3). Qualitative 52 228 methods were largely found in Alaska (n=4),15 102-104 Canada (n=7),24 92-97 Greenland 53 54 229 (n=4)110-113 and the Faroe Islands (n=1).117 55 56 230 The identified studies were further categorized into the different disease groups based on 57 58 231 the focus or included patient group in the studies. Nearly a fifth of the studies did not 59 60 8

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1 2 3 232 focus on a specific illness and were categorized as general (figure 4). These general

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 233 studies typically took the form of a patient experience survey sent to a random sample of 6 24 54 56 63 72 86 88 96-101 7 234 citizens or patients in a particular region or hospital network (n=18). 8 235 103 108 110 114 Other common areas of patient care where patient experience studies were 9 10 236 conducted were in maternal health (n=13),27 32 36 47 48 75 77 78 89 92 104 111 115 primary 11 12 237 healthcare (PHC) (n=12),15 16 35 39 53 55 58 73 76 81 82 94 mental health and addiction (n=9),40 45 13 57 65 66 79 90 109 33 37 38 49 102 105 112 113 29 34 74 84 87 93 107 117 14 238 cancer (n=8), emergency (n=8), and 15 239 surgery (n=6).25 46 51 59 64 69 Less than five studies were identified in each of the remaining 16 17 240 nine areas (figure 4). Studies of primary healthcare, surgery, pain, headache, and pediatric 18 For peer review only 19 241 issues were more likely to use quantitative methodologies whereas studies of cancer, 20 242 geriatric health, diabetes, disability, and pharmacy issues were more likely to rely on 21 22 243 qualitative methodologies (figure 4). Studies of general health issues, maternal/child 23 24 244 health, mental health/addiction, emergency, and communicable disease used quantitative 25 26 245 and qualitative methodologies in approximately equal measure. See also supplement 3 27 246 for extraction table and detailed overview of the articles. 28 29 30 247 31 32 248 Figure 3. Country by Study design (n=102), 3 of the 96 studies included 3 countries. 33 34 249 35 36 250 Figure 4. Reason for seeking care by Study design (n=96). 37 http://bmjopen.bmj.com/ 38 251 39 40 41 252 Thematic results 42 253 Over half of the included articles (n=49) did not focus on any of the four predefined 43 44 254 categories that were thought to be characteristic of circumpolar health systems: 45 on October 1, 2021 by guest. Protected copyright. 46 255 Indigenous values, rural/remote health, climate change, or telehealth. Table 2 and figure 47 48 256 5 provide an overview of the 47 articles that account for findings valuable to the 49 257 circumpolar-specific patient experience categories. The remaining studies related to 50 51 258 patient perspectives and experiences with healthcare services were included in the general 52 53 259 analysis of patient experiences studies. 54 55 260 56 57 261 Table 2. Studies containing one or more of the four predefined categories (n=47). 58 59 60 9

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1 2 3 Telehealth Rural/remote Indig. values Climate change

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 4 15 6 - 6 7 7 3 8 2 9 10 8 11 262 12 13 263 Figure 5. Country by Category (n=47). 14 15 16 264 17 18 265 It was noteworthyFor that every peer Canadian review and Greenlandic only article contained at least one 19 266 predefined circumpolar patient experience factor: Indigenous values, rural and remote 20 21 267 healthcare, climate change, or telehealth. 7 out of 9 articles from Alaska (US) (77%),15 99- 22 23 268 101 103 105 106 16 out of 24 articles from Norway (67%),48 54-61 65-71 2 out of 5 articles from 24 108 109 116 25 269 Finland (40%), 1 out of 3 articles from Russia (33%), 6 out of 22 articles from 26 270 Sweden (27%),16 80-82 86 89 and 2 out of 24 articles from Iceland (8%)43 44 contained at least 27 28 271 one of these factors, while the article from Faroe Islands contained none of the factors. 29 30 272 Of the predefined circumpolar issues, rural and remote healthcare was the most 31 15 16 24 43 44 54-56 58-61 65 70 71 80 89 90 92-101 103 105 106 109-111 113 32 273 commonly captured factor (n=36), 33 274 116 followed by Indigenous values (n=21),15 24 57 58 66-68 70 81 91 93-98 106 110-113 telehealth 34 35 275 (n=13),15 16 59-61 69 71 82 86 89 98 108 109 and climate change (n=3).94 95 106 Results relevant to 36 37 276 the four pre-defined themes are summarized below. http://bmjopen.bmj.com/ 38 39 277 40 41 278 Rural/remote & telehealth 42 43 279 Receiving care in one’s home community, geographical proximity and the possibility to 44 45 280 save costs and time for not having to travel to urban areas for healthcare services, were on October 1, 2021 by guest. Protected copyright. 46 281 aspects important to positive patient experiences.15 16 43 54 55 59-61 71 89 92 99 103 105 In the 13 47 48 282 studies investigating patient experiences with telehealth, patients responded that 49 50 283 telehealth had obviated the need for travel or that even if telehealth had limitations, they 51 284 would still prefer teleconsultation from having to travel far distances.16 59 71 82 89 101 109 One 52 53 285 Swedish study found that patients experienced that the waiting times for telehealth calls 54 55 286 were too long,86 while a study in Finland found that patient felt they cut waiting time and 56 108 57 287 were enabled to access quality care faster. 58 59 60 10

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1 2 3 288 Experiences with telemedical devices were diverse among the identified studies. Three

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 289 studies noted that patients appreciated the presence of more than one health worker in the 6 59 61 69 7 290 consultation, which gave them the experience of a more thorough consultation. 8 291 Patients in other studies doubted professionals’ ability to diagnose certain diseases 9 10 292 without physical contact.15 89 They were in some cases able to follow the examination on 11 12 293 the screen,59 69 while others were uncomfortable appearing on the screen.59 Negative 13 14 294 experiences with telemedical consultations were linked to not being able to build a 15 295 personal relationship with the professional on the other side of the screen15 69 or 16 17 296 participants in the consultation not introducing themselves.89 108 Lastly, some studies on 18 For peer review only 19 297 satisfaction with telehealth consultations found that patients saw further potential if 20 298 technology was improved.15 89 21 22 23 299 Negative patient experiences or issues related to receiving care in urban areas despite 24 300 having to travel far were unstable or lack of physician coverage,54-56 58 94 105 perceived 25 26 301 disparities in accessibility to high quality healthcare in rural regions,24 44 90 100 limited 27 28 302 services offered in rural areas,54 70 94 103 poor continuity in care or not being able to build 29 30 303 a relationship with the provider lead to insecurity among patients and thereby decreased 31 304 use of health services,80 lack of accommodation for patients and family members when 32 33 305 treated in urban areas,93 97 101 and being overwhelmed and disoriented when traveling to 34 68 97 35 306 unknown urban areas. 36 37 307 The 15 qualitative studies gave more nuanced patient experiences. Studies from http://bmjopen.bmj.com/ 38 39 308 Greenland and Canada with Inuit patients found that not being treated in their home 40 309 community gave patients the feeling of being isolated and cut off, as well as feeling out 41 42 310 of their natural rhythm and tradition.93 94 98 103 110 111 113 In one of these studies this was 43 44 311 also associated with the context of colonial history.98 Having to leave one’s family and 45 on October 1, 2021 by guest. Protected copyright. 46 312 life in order to access care also lead to destabilizing situations such as patients missing 47 313 work.94 111 Not having immediate access to services made patients in rural areas feel 48 49 314 unsafe.94 Levels of trust that rural patients felt towards local healthcare workers varied 50 51 315 across different studies, with some patients worrying about the risk of gossiping in small 52 316 communities.65 92 94-96 A study from Russia assessing the diagnostic delay of tuberculosis 53 54 317 found that patients in rural areas described physicians to not be equipped with the 55 56 318 competencies required for practice in the region, and they did not expect “good doctors” 57 116 58 319 wanting to serve their communities, which influences their choice of accessing care. 59 320 Another remote challenge in relation to healthcare discussed, was the difficulty of being 60 11

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1 2 3 321 able to access healthy food, which often was a recommendation or part of a treatment

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 322 given by physicians.95 106 6 7 323 Indigenous values & climate change 8 9 324 A majority of the studies presenting aspects related to Indigenous values used qualitative 10 11 325 methods (15 of 21). Aspects of patient experiences categorized as being a characteristic 12 326 for Indigenous values related overall to being able to receive information in their 13 14 327 Indigenous language and the availability of a good translator,15 24 58 66 68 70 93-98 111 112 health 15 15 24 66 70 81 91 110 16 328 professionals and services being culturally responsive, recognizing 17 329 traditional medicine or having a holistic perspective in care,57 81 93 95 96 113 and when 18 For peer review only 19 330 hospitalized, having access to traditional food, nature, social and cultural activities.67 68 93 20 21 331 95 97 106 113 22 23 332 Patients in studies from Greenland and Canada stated issues with not being able to receive 24 25 333 information in their Indigenous language in consultations, pamphlets or signs in the health 26 93 97 111 112 24 27 334 centres. This was also linked with poor provision of good quality interpreters. 28 335 58 68 97 98 110 112 In a Norwegian study, Sami patients felt that some medical terms did not 29 30 336 exist in the Sami language, which challenged the patient-provider conversation.66 Many 31 32 337 studies conducted in areas with Sami populations reported Sami patients to have had 33 338 negative experiences with healthcare providers not knowing and respecting their culture 34 35 339 and customs58 66 68 enhancing existing mistrust from the colonial history.70 81 36 37 340 Meaningful activities and access to traditional foods were important to patient http://bmjopen.bmj.com/ 38 39 341 experiences when hospitalized. A Norwegian study focusing on the benefits of providing 40 41 342 traditional foods in dementia care, resulted in increased wellbeing and improved appetite 42 67 97 43 343 among patients. This was also experienced by Inuit patients in a Canadian study. Three 44 344 articles68 95 97 reported the health-promoting benefits of time spent on the land. Of these, 45 on October 1, 2021 by guest. Protected copyright. 46 345 Hanssen 68 described how medical institutions often lack opportunities for Indigenous 47 48 346 people to engage with the ‘natural rhythm of life’ through outdoor activities or 49 347 consumption of traditional food. 50 51 52 348 Only three studies using qualitative or mixed methods mentioned climate change as an 53 349 aspect influencing patients’ experiences in healthcare.94 95 106 Bird, et al. 95 described how 54 55 350 climate change was making it harder for Inuit living on Baffin Island to hunt country food 56 57 351 and maintain their diabetes treatment plans.95 Oosterveer and Young 94 and Wetterhall, et 58 106 59 352 al. noted how extreme weather conditions challenged patients’ access to healthcare 60 12

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1 2 3 353 and transportation to hospital. These are aspects linked to climate change and circumpolar

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 354 peoples’ health experiences. 6 7 355 Studies with Inuit and Sami populations found that services were often too task- or 8 9 356 medication-driven while lacking meaningful and patient-centred activities.57 68 93 113 10 11 357 Indigenous patients appreciated consultations where physicians listened instead of asking 12 358 many questions.96 13 14 15 359 Other patient experience aspects 16 360 Over half of all articles discussed the influence of health professionals’ attitudes towards 17 18 361 the patient as aFor determinant peer of patient review satisfaction. only Good professional skills were 19 85 20 362 described in studies as: acting professional and making the patient feel relaxed or calm, 21 363 92 close monitoring,31 34 86 professionals being confident and not seeming unsure in 22 23 364 consultations,52 competence of midwife as well as their presence without focusing only 24 25 365 on their tasks created a safe haven.36 48 26 27 366 Professionals’ competence for compassionate care and ability to show empathy further 28 38 40 62 86 100 104 29 367 influence patients experience of care. This was described in studies as 30 38 76 80 31 368 nurses’ and physician’s ability to resolve uncertainty, encouraging patients to ask 32 369 questions and respecting patients’ knowledge,28 41 86 102 meeting the patients’ needs,26 32 39 33 34 370 72 and being supportive.36 44 48 63 77 Negative patient experiences were rooted in poor 35 32 47 78 39 52 63 88 91 36 371 support, indifference of staff towards patients or being ignored, and 37 372 personnel having a negative attitude.39 88 http://bmjopen.bmj.com/ 38 39 40 373 Narratives from Norwegian community mental health centres pointed out an issue of 41 374 power imbalance between male physicians and female patients.65 Three studies found that 42 43 375 patients did not feel comfortable to disagree or express criticism towards a health 44 45 376 professional, or experienced that complaints were not properly recognized and handled.24 on October 1, 2021 by guest. Protected copyright. 46 72 73 88 47 377 48 49 378 Being respected as an individual and not only seen as a patient was associated with 50 379 positive experiences,36 40 42 44 48 55 88 102 107 115 while the inverse, ‘being referred to as a 51 52 380 diagnosis rather than person’,88 was associated with negative experiences. Patients 53 54 381 reported negative experiences when health personnel only read from the hospital record 55 86 42 59 93 56 382 instead of listening to the patient and were poor in communicating. Some studies’ 57 383 participants reported not having received sufficient information25 29 44-46 51 57 63 72 73 75 77 78 58 59 384 92 95 96 112 117 leading to insecurity and vulnerability for some patients.75 77 112 Consequently, 60 13

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1 2 3 385 gaining adequate and useful information was described to empower patients next to

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 386 contribute to satisfaction.27 30 36 39 42 49 53 64 76 79 82 86 104 112 6 7 387 Promptness100 and not being in a rush but having time when being with the patient was 8 9 388 important for patient experience; this was also linked to complaints about short 10 30 36 39 55 86 88 93 110 11 389 appointment times. In nine studies long waiting times for treatment and 12 390 appointment, as well as diagnostic delay were reported and influenced satisfaction of care 13 14 391 negatively.37 45 50 54 63 74 88 92 93 15 16 392 Coordination of care and cooperation between professionals was also mentioned as 17 18 393 adversely affectingFor the servicespeer patients review received – theonly feeling of falling out of the 19 44 45 63 86 92 105 20 394 system. In relation to this it was also important for patients to meet the same 21 395 professionals in order to experience a greater continuity of care.33 44 Relatives’ 22 23 396 involvement in care and their support further contributes to a positive patient 24 25 397 experience,35 46 79 83 93 since hospitalization, for example, can lead to isolation and makes 26 37 40 113 27 398 social support even more important. 28 29 399 Other aspects criticized by patients were the cleanliness, structure and quality of the 30 25 73 101 114 39 31 400 facilities, lack of activities such as sports, parking spaces and heating systems, 32 401 40 87 hospital food,39 high costs such as medicines or even the lack of medicines.100 114 33 34 35 402 36 37 403 DISCUSSION http://bmjopen.bmj.com/ 38 39 404 This review aimed to scope the literature and identify peer-reviewed studies reporting on 40 41 405 patient experiences of healthcare in the circumpolar region. We chose to use four pre- 42 406 defined categories relevant to circumpolar health to provide structure to our results. These 43 44 407 categories included rural and remote geography, telehealth, Indigenous values, and 45 on October 1, 2021 by guest. Protected copyright. 46 408 climate change. 47 48 409 The most common descriptions of the rural and remote theme included patient 49 50 410 experiences with travel costs, weather conditions influencing the ability to travel, and 51 411 lack of physicians influencing continuity of care. Increased accessibility of care and 52 53 412 concerns about the ability to establish a personal relationship with providers were 54 55 413 commen descriptions relevant to the telehealth theme. Similarly, studies of Indigenous 56 57 414 values in the experiences of healthcare included being able to speak one’s own language 58 415 during consultations, the difficulties of accessing an interpreter, access to traditional food 59 60 14

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1 2 3 416 and outdoor activities during hospitalization, experiencing isolation from family and

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 417 community when hospitalized, and receiving holistic care. 6 7 418 This review demonstrates that rural and remote geography, telehealth, climate change 8 9 419 and Indigenous values are highly relevant elements of circumpolar health systems. 10 11 420 However, there are numerous other dimensions of care relevant to circumpolar 12 421 populations that should be investigated further. One example is the relationship between 13 14 422 patient experiences and the environment. Climate change was a pre-defined category but 15 16 423 only mentioned in three out of 96 articles. In a study that took place in Nunavut, diabetes 17 424 patients described how changes in the climate have affected the migratory habits of 18 For peer review only 19 425 animals which has impeded their ability to procure traditional foods. This has made it 20 21 426 more difficult for these patients to obtain healthy food that can be used to manage their 22 95 23 427 diabetes. Other articles discussed how the increasing frequency of severe weather events 24 428 has impacted patients traveling far distances to access treatment.94 106 Circumpolar 25 26 429 literature has described the vulnerabilities of Indigenous and non-Indigenous peoples and 27 28 430 the impacts of climate change on health and health systems. Impacts of climate change 29 30 431 include changes in vectors of disease, emerging epidemics, food security, increases in 31 432 land-based injury and mental health issues.118-122 Considering the myriad effects of 32 33 433 climate change on the health of northern populations, in particular Indigenous groups who 34 123 35 434 depend on natural resources for their wellbeing, the natural environment could be 36 435 explored as a critical determinant of patient experiences for circumpolar populations. 37 http://bmjopen.bmj.com/ 38 39 436 Contextualizing climate change as a determinant of patient experiences would necessitate 40 437 a broader definition of what constitutes a ‘health system’. This shift away from the 41 42 438 framework that defines health systems as the sum of institutions and resources that deliver 43 44 439 health services to a population requires a values-based conception grounded in the 45 124 125 on October 1, 2021 by guest. Protected copyright. 46 440 circumpolar context and especially in Indigenous knowledge. A multi-national 47 441 group previously identified and described nine values essential to integrating Indigenous 48 49 442 ideologies into health system stewardship.126 Many of these values, such as cultural 50 51 443 responsiveness, kinship, and holism were echoed in much of the Indigenous literature 52 444 included in this review. An expanded definition of health systems that not only takes into 53 54 445 account the experiences of patients within healthcare facilities, but also of individuals 55 56 446 enhancing their mental and physical health through on-the-land activities, would be more 57 58 447 concordant with the circumpolar context. Additionally, it would enable capture of 59 448 relevant information that could guide health system improvement, such as features in the 60 15

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1 2 3 449 community and natural environment that promote health. A panel of circumpolar health

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 450 experts previously noted that moving away from the “narrow paradigm of ‘health 6 124 7 451 systems’” would be necessary to promote system-wide changes that support patients. 8 9 452 Another critical component of making health systems more responsive to patient 10 11 453 experiences is evaluation. Some regions rely on survey-based methodologies to collect 12 454 patient feedback, while others use interviews, focus groups, and other qualitative 13 14 455 methodologies. In this study, we found that Scandinavia accounts for the majority of the 15 16 456 quantitative studies, where patient satisfaction is often rated from predefined 17 457 questionnaires. This is a method used to standardize evaluation of both patients’ views 18 For peer review only 19 458 on facilities, information and elements of treatment, and to optimize and improve these 20 21 459 areas. Qualitative studies are used to access a more nuanced knowledge of perceived 22 23 460 satisfaction and experience of the individual or smaller groups. Qualitative methods were 24 461 more frequently employed in studies originiating in Canada, Alaska and Greenland. 25 26 462 Notably, these were the same countries that reported most on Indigenous values and 27 28 463 rural/remote themes. Additionally, climate change only came up as a factor in qualitative 29 30 464 and mixed-method studies, which emphasizes the importance of using qualitative 31 465 methods to gather data on what is truly important to patients rather than solely relying 32 33 466 upon standardized surveys. 34 35 467 This discussion of aligning health systems more closely with patient needs benefits from 36 37 468 a review of global literature from settings that share similar characteristics with http://bmjopen.bmj.com/ 38 39 469 circumpolar regions. Australia, which also has large rural and remote areas as well as an 40 470 Indigenous population, has framed these discussions around patient experiences through 41 42 471 the lens of cultural safety and has developed a monitoring framework that measures the 43 44 472 cultural responsiveness and experiences of patients within the health system.127 Cultural 45 on October 1, 2021 by guest. Protected copyright. 46 473 safety is also emerging as a priority for circumpolar national and Indigenous governments 47 474 and this framing of patient experiences warrents further consideration for circumpolar 48 49 475 nations where colonial legacies are prominent in health services. Numerous studies of 50 51 476 Aboriginal and Torres Strait Islander populations identified themes that this study also 52 477 found to be relevant to circumpolar Indigenous groups, including traditional foods, 53 54 478 language services, coordination of care, and the importance of Indigenous staff 55 56 479 members.128 129 These similarities suggest that changes meant to improve the experiences 57 58 480 of patients within circumpolar health systems could be grounded by previous successes 59 481 found elsewhere in the world. 60 16

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1 2 3 482 This scoping review is both comprehensive and thorough; no restrictions limited the

4 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 483 search by language or date of publication. This allowed for the broadest inclusion of 6 7 484 relevant articles possible. Since 96 relevant articles were included in our review, we chose 8 485 not to search for grey literature. We abstained from applying an external framework; this 9 10 486 allowed for an analysis grounded more organically in the data provided and responsive 11 12 487 to the circumpolar context. 13 14 488 Furthermore, nearly every article identified through the search criteria could be accessed 15 16 489 in full text, and all full texts were reviewed by multiple authors. Similar redundancy was 17 490 built into the data extraction process. These procedures ensured accuracy and rigor. 18 For peer review only 19 20 491 Based on this extensive review, next steps could involve the development of a 21 492 circumpolar patient experience framework to guide future studies and comparative work 22 23 493 in this area. Furthermore, a review of the existing grey literature would also be relevant, 24 25 494 since, to our knowledge, not all research conducted in the circumpolar region is published 26 27 495 in peer-reviewed journals. Additionally, this work could be further contextualized in 28 496 sharing circles and other community-based participatory methodologies to enable 29 30 497 validation of themes and additional comparison. Such approaches would enable future 31 32 498 studies and health systems to become more responsive to the needs of circumpolar 33 34 499 populations. 35 36 500 37 http://bmjopen.bmj.com/ 38 501 Acknowledgements: We would like to acknowledge the librarians Sandra Campbell at 39 502 the University of Alberta and Anne Faber Hansen at the University of Southern Denmark 40 503 who helped to set up a comprehensive and detailed search and assisting us in accessing 41 504 articles. We would also like to acknowledge the Institute for Circumpolar Health 42 43 505 Research, which provided administrative support. 44 506 Author contributions: Conceived and designed the review: CI, NFH, SC, CVLL, KJ, 45 507 NLH. Screening and reviewing articles and data: NFH, CI, KJ, NLH. Data extraction: on October 1, 2021 by guest. Protected copyright. 46 47 508 NFH, CI. Primary draft of the manuscript: CI, NFH. Revising the manuscript: CI, NFH, 48 509 SC, CVLL, NLH, KJ. All authors reviewed and approved the manuscript. 49 510 Funding: Support was provided by Canadian Institutes of Health Research Strategy for 50 511 Patient-Oriented Research, PICHIN Operations and Management grant #143661. 51 52 512 Competing interest: The authors declare that they have no competing interest. 53 54 513 Patient consent: Not required. 55 514 Data sharing statement: Partial extraction table made available online. Full version 56 57 515 available on request. 58 516 59 60 17

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4 813 outmigration in Alaska. International journal of circumpolar health BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 814 2010;69(5):528-44. 7 815 104. DeMay DA. The experience of being a client in an Alaska public health nursing 8 816 home visitation program. Public Health Nursing 2003;20(3):228-36. 9 817 105. Parret VC. Meeting The Needs Of Breast Cancer Survivors In Alaska: Survivors' 10 818 And Healthcare Providers' Perspectives. University of Alaska, 2011. 11 819 106. Wetterhall S, Burrus B, Shugars D, et al. Cultural context in the effort to improve 12 820 oral health among Alaska Native people: the dental health aide therapist model. 13 14 821 American journal of public health 2011;101(10):1836-40. 15 822 107. Pellikka H, Lukkarinen H, Isola A. Potilaiden kasityksia hyvasta hoidosta 16 823 yhteispaivystyksessa [Patients' views of good nursing care in an emergency unit]. 17 824 Hoitotiede 2003;15(4):166-79. 18 825 108. Patient satisfactionFor withpeer health care review services via videoconferencing. only Proceedings of 19 826 the Human Factors and Ergonomics Society Annual Meeting; 2000. SAGE 20 827 Publications Sage CA: Los Angeles, CA. 21 22 828 109. Mielonen M-L, Ohinmaa A, Moring J, et al. Psychiatric inpatient care planning via 23 829 telemedicine. Journal of Telemedicine & Telecare 2000;6(3):152-57. 24 830 110. Elsass P, Christensen H, Falhof J, et al. Greenlanders in hospital. An interview study 25 831 of communication between patients and therapists, satisfaction and therapeutic 26 832 preferences. Ugeskrift for laeger 1994;156(12):1794-97. 27 833 111. Montgomery-Andersen RA, Willén H, Borup I. ‘There was no other way things 28 29 834 could have been.’Greenlandic women's experiences of referral and transfer during 30 835 pregnancy. Anthropology & medicine 2010;17(3):301-13. 31 836 112. Hounsgaard L, Augustussen M, Møller H, et al. Women's perspectives on illness 32 837 when being screened for cervical cancer. International journal of circumpolar 33 838 health 2013;72(1):21089. 34 839 113. Aagaard T. Patient involvement in healthcare professional practice–a question about 35 840 knowledge. International journal of circumpolar health 2017;76(1):1403258. 36 37 841 114. Fotaki M. Users’ perceptions of health care reforms: quality of care and patient rights http://bmjopen.bmj.com/ 38 842 in four regions in the Russian Federation. Social Science & Medicine 39 843 2006;63(6):1637-47. 40 844 115. Heiberg E, Skurtveit S. Voices of women in North-West Russia - About maternity 41 845 care. Tidsskrift for den Norske Laegeforening 2005;125(20):2826-28. 42 846 116. Kuznetsov VN, Grjibovski AM, Mariandyshev AO, et al. Hopelessness as a basis 43 847 for tuberculosis diagnostic delay in the Arkhangelsk region: a grounded theory 44 45 848 study. BMC Public Health 2013;13(1):712. on October 1, 2021 by guest. Protected copyright. 46 849 117. Askham J, Kuhn L, Frederiksen K, et al. The information and support needs of 47 850 Faroese women hospitalised with an acute coronary syndrome. Journal of clinical 48 851 nursing 2010;19(9‐10):1352-61. 49 852 118. Ford JD, Berrang-Ford L, King M, et al. Vulnerability of Aboriginal health systems 50 853 in Canada to climate change. Global Environmental Change 2010;20(4):668-80. 51 52 854 doi: 10.1016/j.gloenvcha.2010.05.003 53 855 119. Costello A, Maslin M, Montgomery H, et al. Global health and climate change: 54 856 moving from denial and catastrophic fatalism to positive action. Philos Transact 55 857 A Math Phys Eng Sci 2011;369(1942):1866-82. doi: 10.1098/rsta.2011.0007 56 858 [published Online First: 2011/04/06] 57 859 120. Parkinson A. Sustainable Development, Climate Change and Human Health in the 58 860 Arctic. International Journal of Circumpolar Health 2010;69(1) 59 60 24

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1 2 3 861 121. Lancet and the University College London Institute for Global Health Commission.

4 862 Managing the health effects of climate change. The Lancet May 16, 2009;373 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 5 6 863 122. Bourque F, Willox AC. Climate change: the next challenge for public mental health? 7 864 Int Rev Psychiatry 2014;26(4):415-22. doi: 10.3109/09540261.2014.925851 8 865 123. Parkinson AJ, Evengård B. Climate change, its impact on human health in the Arctic 9 866 and the public health response to threats of emerging infectious diseases. Global 10 867 Health Action 2009;2(1):2075. 11 868 124. Chatwood S, Bytautas J, Darychuk A, et al. Approaching a collaborative research 12 869 agenda for health systems performance in circumpolar regions. International 13 14 870 journal of circumpolar health 2013;72(1):21474. 15 871 125. Cueva K, Guistini S, Healey G, et al. From Resilient to Thriving: Supporting Health 16 872 and Well-Being in Arctic Communities. 2019 Policy Brief-Fulbright Arctic 17 873 Initiative Symposium: Fulbright Arctic Initiative Program Cohort II (2018–19), 18 874 2019. For peer review only 19 875 126. Chatwood S, Paulette F, Baker GR, et al. Indigenous values and health systems 20 876 stewardship in circumpolar countries. International Journal of Environmental 21 22 877 Research Public Health 2017;14(12):1462. 23 878 127. Australian Institute of Health and Welfare. Cultural safety in health care for 24 879 Indigenous Australians: monitoring framework. Canberra: AIHW: Australian 25 880 Government: Australian Institute of Health and Welfare, 2020. 26 881 128. Green M, Anderson K, Griffiths K, et al. Understanding Indigenous Australians’ 27 882 experiences of cancer care: Stakeholders’ views on what to measure and how to 28 29 883 measure it. BMC health services research 2018;18(1):982. 30 884 129. Wotherspoon C, Williams CM. Exploring the experiences of Aboriginal and Torres 31 885 Strait Islander patients admitted to a metropolitan health service. Australian 32 886 Health Review 2019;43(2):217-23. 33 887 34 35 36 37 http://bmjopen.bmj.com/ 38 39 40 41 42 43 44 45 on October 1, 2021 by guest. Protected copyright. 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 25

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33 http://bmjopen.bmj.com/ 34 35 36 37 38 39 40

1 2 3 Figure 3. Country by Study design (n=102), 3 of the 96 studies included 3 countries.

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1 2 3 Figure 4. Reason for seeking care by Study design (n=96).

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BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 1 2 3 Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for 4 Scoping Reviews (PRISMA-ScR) Checklist 5 6 REPORTED SECTION ITEM PRISMA-ScR CHECKLIST ITEM 7 ON PAGE # 8 TITLE 9 Title 1 Identify the report as a scoping review. 1-2 10 ABSTRACT 11 Provide a structured summary that includes (as 12 applicable): background, objectives, eligibility criteria, Structured 13 2 sources of evidence, charting methods, results, and 2-3 summary 14 conclusions that relate to the review questions and 15 objectives. 16 INTRODUCTION For peer review only 17 Describe the rationale for the review in the context of 18 what is already known. Explain why the review Rationale 3 3-5 19 questions/objectives lend themselves to a scoping 20 review approach. 21 Provide an explicit statement of the questions and 22 objectives being addressed with reference to their key 23 Objectives 4 elements (e.g., population or participants, concepts, 3-5 24 and context) or other relevant key elements used to 25 conceptualize the review questions and/or objectives. 26 METHODS 27 Indicate whether a review protocol exists; state if and Protocol and where it can be accessed (e.g., a Web address); and if 28 5 N/A 29 registration available, provide registration information, including 30 the registration number. 31 Specify characteristics of the sources of evidence used as eligibility criteria (e.g., years considered, 32 Eligibility criteria 6 4-7 language, and publication status), and provide a

33 http://bmjopen.bmj.com/ rationale. 34 Describe all information sources in the search (e.g., 35 Information databases with dates of coverage and contact with 36 7 6-7 sources* authors to identify additional sources), as well as the 37 date the most recent search was executed. 38 Present the full electronic search strategy for at least 1 39 Search 8 database, including any limits used, such that it could Supplement 1 40 be repeated.

41 Selection of State the process for selecting sources of evidence on October 1, 2021 by guest. Protected copyright. 42 sources of 9 (i.e., screening and eligibility) included in the scoping 6-7 43 evidence† review. 44 Describe the methods of charting data from the 45 included sources of evidence (e.g., calibrated forms or 46 Data charting forms that have been tested by the team before their 10 7 47 process‡ use, and whether data charting was done 48 independently or in duplicate) and any processes for 49 obtaining and confirming data from investigators. 50 List and define all variables for which data were Data items 11 N/A 51 sought and any assumptions and simplifications made. 52 If done, provide a rationale for conducting a critical Critical appraisal of appraisal of included sources of evidence; describe 53 individual sources 12 N/A the methods used and how this information was used 54 of evidence§ 55 in any data synthesis (if appropriate). 56 57 58 59 1 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml 60 BMJ Open Page 36 of 37

BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from 1 2 3 REPORTED SECTION ITEM PRISMA-ScR CHECKLIST ITEM 4 ON PAGE # 5 Synthesis of Describe the methods of handling and summarizing 13 7 6 results the data that were charted. 7 RESULTS 8 Give numbers of sources of evidence screened, Selection of 9 assessed for eligibility, and included in the review, with sources of 14 7, figure 2 10 reasons for exclusions at each stage, ideally using a evidence 11 flow diagram. 12 Characteristics of For each source of evidence, present characteristics 9 + 13 sources of 15 for which data were charted and provide the citations. Supplement 2 14 evidence 15 Critical appraisal If done, present data on critical appraisal of included 16 within sources of 16 N/A For peersources of evidence review (see item 12). only 17 evidence 18 Results of For each included source of evidence, present the 19 individual sources 17 relevant data that were charted that relate to the 7-14 20 of evidence review questions and objectives. Synthesis of Summarize and/or present the charting results as they 21 18 7-14 22 results relate to the review questions and objectives. 23 DISCUSSION 24 Summarize the main results (including an overview of Summary of concepts, themes, and types of evidence available), 25 19 14-15 26 evidence link to the review questions and objectives, and 27 consider the relevance to key groups. 28 Limitations 20 Discuss the limitations of the scoping review process. 16-17 29 Provide a general interpretation of the results with 30 Conclusions 21 respect to the review questions and objectives, as well 17 31 as potential implications and/or next steps. 32 FUNDING Describe sources of funding for the included sources

33 http://bmjopen.bmj.com/ of evidence, as well as sources of funding for the 34 Funding 22 17 scoping review. Describe the role of the funders of the 35 scoping review. 36 JBI = Joanna Briggs Institute; PRISMA-ScR = Preferred Reporting Items for Systematic reviews and Meta-Analyses 37 extension for Scoping Reviews. 38 * Where sources of evidence (see second footnote) are compiled from, such as bibliographic databases, social media 39 platforms, and Web sites. 40 † A more inclusive/heterogeneous term used to account for the different types of evidence or data sources (e.g., quantitative and/or qualitative research, expert opinion, and policy documents) that may be eligible in a scoping

41 on October 1, 2021 by guest. Protected copyright. 42 review as opposed to only studies. This is not to be confused with information sources (see first footnote). ‡ The frameworks by Arksey and O’Malley (6) and Levac and colleagues (7) and the JBI guidance (4, 5) refer to the 43 process of data extraction in a scoping review as data charting. 44 § The process of systematically examining research evidence to assess its validity, results, and relevance before 45 using it to inform a decision. This term is used for items 12 and 19 instead of "risk of bias" (which is more applicable 46 to systematic reviews of interventions) to include and acknowledge the various sources of evidence that may be used 47 in a scoping review (e.g., quantitative and/or qualitative research, expert opinion, and policy document). 48

49 50 From: Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews 51 (PRISMAScR): Checklist and Explanation. Ann Intern Med. 2018;169:467–473. doi: 10.7326/M18-0850. 52 53 54 55 56 57 58 59 2 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml 60 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from

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1 Ref.list # Author Year Title Language Study Design Method 1 Method 2 Method 3 Method 4 Country 1 Country 2 Country 3 Reason for Seeking Treatment 1 Telehealth Indigenous values Rural/remote Climate Change 15 Hiratsuka, et al. 2013 Patient and provider perspectives on using telemedicine for chronic disease management English Qualitative Focus groups USA PHC TRUE TRUE TRUE FALSE 2 among Native Hawaiian and Alaska Native people. 16 Boman, et al. 2014 Robot-assisted remote echocardiographic examination and teleconsultation: A English Quantitative Survey Sweden PHC TRUE FALSE TRUE FALSE 3 randomized comparison of time to diagnosis with standard of care referral approach 24 O'Neil 1989 The Cultural and Political Context of Patient Dissatisfaction in Cross Cultural Clinical English Qualitative Participant Text analysis Focus Interview Canada General FALSE TRUE TRUE FALSE 4 Encounters: A Canadian Inuit Study observation groups 25 Sigurthardottir 1996 Satisfaction among ambulatory surgery patients in two hospitals in Iceland. English Quantitative Survey Iceland Surgery FALSE FALSE FALSE FALSE 5 26 Bragadottir 1999 A descriptive study of the extent to which self-perceived needs of parents are met in English Quantitative Survey Iceland Pediatrics FALSE FALSE FALSE FALSE paediatric units in Iceland. 6 27 Gottfredsdottir, et al. 2016 Content of antenatal care: Does it prepare women for birth?. English Quantitative Survey Iceland Maternal Health FALSE FALSE FALSE FALSE 7 28 Jonsdottir, et al. 2015 Chronic pain-related patient-provider communication: The significance of health related English Quantitative Survey Iceland Pain FALSE FALSE FALSE FALSE quality of life and satisfaction 29 Snorradottir, et al. 2014 [Patient satisfaction with care and interaction with staff in the Acute Cardiac Unit at Icelandic Quantitative Survey Iceland Emergency FALSE FALSE FALSE FALSE 8 Landspitali - The National University Hospital of Iceland] 30 Jonsdottir, et al. 2016 Patients' Perception of Chronic-Pain-Related Patient-Provider Communication in Relation English Quantitative Survey Iceland Pain FALSE FALSE FALSE FALSE 9 to Sociodemographic and Pain-Related Variables: A Cross-Sectional Nationwide Study.

10 31 Zoëga, et al. 2015 Quality Pain Management in the Hospital Setting from the Patient's Perspective English Quantitative Survey Iceland Pain FALSE FALSE FALSE FALSE 32 Sigurdardottir, et al. 2017 The predictive role of support in the birth experience: A longitudinal cohort study English Quantitative Survey Iceland Maternal Health FALSE FALSE FALSE FALSE 11 33 Hjörleifsdóttir, et al. 2010 Satisfaction with care in oncology outpatient clinics: Psychometric characteristics of the English Quantitative Survey Iceland Cancer FALSE FALSE FALSE FALSE 34 Baldursdottir & Jonsdottir 2002 The importance of nurse caring behaviors as perceived by patients receiving care at an English Quantitative Survey Iceland Emergency FALSE FALSE FALSE FALSE 12 emergency department. 35 Sigurdardottir, et al. 2017 The importance of family support in pediatrics and its impact onFor healthcare satisfaction. EnglishpeerQuantitative Survey reviewIceland onlyPHC FALSE FALSE FALSE FALSE 13 36 Halldorsdottir & Karlsdottir 1996 Empowerment or discouragement: women's experience of caring and uncaring English Qualitative Interview Iceland Maternal Health FALSE FALSE FALSE FALSE encounters during childbirth. 14 37 Hjorleifsdottir, et al. 2008 Living with cancer and perception of care: Icelandic oncology outpatients, a qualitative English Qualitative Interview Iceland Cancer FALSE FALSE FALSE FALSE study. 15 38 Fridfinnsdottir 1997 Icelandic women's identifications of stressors and social support during the diagnostic English Qualitative Interview Iceland Cancer FALSE FALSE FALSE FALSE phase of breast cancer 16 39 Thorsteinsson 2002 The quality of nursing care as perceived by individuals with chronic illnesses: The magical English Qualitative Interview Iceland PHC FALSE FALSE FALSE FALSE touch of nursing 17 40 Biering & Jensen 2011 The concept of patient satisfaction in adolescent psychiatric care: A qualitative study English Qualitative Interview Iceland Mental Health/Addiction FALSE FALSE FALSE FALSE http://bmjopen.bmj.com/ 18 41 Löve, et al. 2018 Trading autonomy for services: Perceptions of users and providers of services for disabled English Qualitative Interview Iceland Disability FALSE FALSE FALSE FALSE people in Iceland 19 42 Jóhannesdóttir & Hjörleifsdóttir 2018 Communication is more than just a conversation: family members' satisfaction with end-of- English Qualitative Interview Iceland Geriatric Health FALSE FALSE FALSE FALSE life care 20 43 Traulsen, et al. 2002 The lay user perspective on the quality of pharmaceuticals, drug therapy and pharmacy English Qualitative Focus groups Iceland Pharmacy FALSE FALSE TRUE FALSE services--results of focus group discussions. 21 44 Arnadottir, et al. 2012 Evaluation of therapy services with the Measure of Processes of Care (MPOC-20): The English Mixed-Methods Focus groups Survey Iceland Disability FALSE FALSE TRUE FALSE perspectives of Icelandic parents of children with physical disability 45 Svavarsdóttir, et al. 2013 A Holistic View in Psychiatric Rehabilitation: The Effects of Structure in Psychiatric English Mixed-Methods Survey Interview Iceland Mental Health/Addiction FALSE FALSE FALSE FALSE 22 Institutions 46 Ingadottir, et al. 2014 The fulfilment of knowledge expectations during the perioperative period of patients English Quantitative Survey Finland Iceland Sweden Surgery FALSE FALSE FALSE FALSE 23 undergoing knee arthroplasty -- a Nordic perspective. 47 Lundgren, et al. 2009 Long-term memories and experiences of childbirth in a Nordic context-A secondary English Qualitative Interview Finland Iceland Sweden Maternal Health FALSE FALSE FALSE FALSE 24 analysis. 48 Sjoblom, et al. 2014 Creating a safe haven-women's experiences of the midwife's professional skills during English Mixed-Methods Survey Text analysis Norway Iceland Sweden Maternal Health FALSE FALSE FALSE FALSE 25 planned home birth in four Nordic countries. 49 Risberg, et al. 1997 Communicating with and treating cancer patients: how does the use of non-proven English Quantitative Survey Norway Cancer FALSE FALSE FALSE FALSE 26 therapies and patients' feeling of mental distress influence the interaction between the on October 1, 2021 by guest. Protected copyright. patient and the hospital staff. 50 Bekkelund, et al. 2014 Patient satisfaction with conventional, complementary, and alternative treatment for cluster English Quantitative Survey Norway Headache FALSE FALSE FALSE FALSE 27 headache in a Norwegian cohort. 51 Wahlberg, et al. 2016 Impact of referral templates on patient experience of the referral and care process: a English Quantitative Survey Norway Surgery FALSE FALSE FALSE FALSE 28 cluster randomised trial. 52 Bekkelund & Salvesen 2006 Patient satisfaction with assessment of headache in specialist centres Norwegian Quantitative Survey Norway Headache FALSE FALSE FALSE FALSE 29 53 Garratt, et al. 2010 The Patient Experiences Questionnaire for Out-of-Hours Care (PEQ-OHC): data quality, English Quantitative Survey Norway PHC FALSE FALSE FALSE FALSE reliability, and validity. 30 54 Olsen & Fylkesnes 1993 The health survey in Finnmark--satisfaction with hospital services Norwegian Quantitative Survey Norway General FALSE FALSE TRUE FALSE 55 Lian & Wilsgaard 2004 Patient satisfaction in general practice before and after the introduction of a list patient Norwegian Quantitative Survey Norway PHC FALSE FALSE TRUE FALSE 31 56 Olsen & Fylkesnes 1991 The health survey in Finnmark--how is the population satisfied with community health Norwegian Quantitative Survey Norway General FALSE FALSE TRUE FALSE services? 32 57 Sorlie & Nergard 2005 Treatment satisfaction and recovery in Saami and Norwegian patients following psychiatric English Quantitative Survey Norway Mental Health/Addiction FALSE TRUE FALSE FALSE hospital treatment: a comparative study. 58 Nystad, et al. 2008 Sami speakers are less satisfied with general practitioners' services. English Quantitative Survey Norway PHC FALSE TRUE TRUE FALSE 33 59 Pedersen & Holand 1995 Tele-endoscopic otorhinolaryngological examination: preliminary study of patient English Quantitative Survey Norway Surgery TRUE FALSE TRUE FALSE satisfaction. 34 60 Muller, et al. 2017 Headache patients' satisfaction with telemedicine: a 12-month follow-up randomized non- English Quantitative Survey Norway Headache TRUE FALSE TRUE FALSE inferiority trial. 35 61 Moseng 2000 Teledermatology - The north Norwegian experience Norwegian Quantitative Survey Norway Dermatology TRUE FALSE TRUE FALSE 62 Garcia, et al. 2014 A pharmacist-led follow-up program for patients with coronary heart disease in North English Qualitative Interview Norway Pharmacy FALSE FALSE FALSE FALSE 36 Norway--a qualitative study exploring patient experiences. 63 Hagensen, et al. 2018 The struggle against perceived negligence. A qualitative study of patients' experiences of English Qualitative Interview Norway General FALSE FALSE FALSE FALSE 37 adverse events in Norwegian hospitals. 64 Trumpy 2002 Should hospital patients get copies of their medical reports? Norwegian Qualitative Interview Norway Surgery FALSE FALSE FALSE FALSE 65 Klausen, et al. 2017 Shared decision making from the service users’ perspective: A narrative study from English Qualitative Interview Norway Mental Health/Addiction FALSE FALSE TRUE FALSE 38 community mental health centers in northern Norway. 66 Dagsvold, et al. 2015 What can we talk about, in which language, in what way and with whom? Sami patients’ English Qualitative Interview Norway Mental Health/Addiction FALSE TRUE FALSE FALSE 39 experiences of language choice and cultural norms in mental health treatment

40 67 Hanssen & Kuven 2016 Moments of joy and delight: the meaning of traditional food in dementia care. English Qualitative Interview Norway Geriatric Health FALSE TRUE FALSE FALSE 68 Hanssen 2013 The influence of cultural background in intercultural dementia care: Exemplified by Sami English Qualitative Interview Norway Geriatric Health FALSE TRUE FALSE FALSE 41 69 Holtan 1998 Patient reactions to specialist telemedicine consultations--a sociological approach. English Qualitative Interview Norway Surgery TRUE FALSE FALSE FALSE 42 43 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 BMJ Open: first published as 10.1136/bmjopen-2020-042973 on 5 October 2020. Downloaded from

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1 70 Blix & Hamran 2017 “They take care of their own”: healthcare professionals’ constructions of Sami persons English Qualitative Focus groups Norway Geriatric Health FALSE TRUE TRUE FALSE with dementia and their families’ reluctance to seek and accept help through attributions to 2 multiple contexts 71 Rotvold, et al. 2003 Telemedicine screening for diabetic retinopathy: staff and patient satisfaction. English Mixed-Methods Interview Survey Norway Diabetes TRUE FALSE TRUE FALSE 3 72 Lovgren, et al. 1998 The view of caring among patients and personnel. English Quantitative Survey Sweden General FALSE FALSE FALSE FALSE 73 Lovgren, et al. 2002 Effects of an implemented care policy on patient and personnel experiences of care. English Quantitative Survey Sweden PHC FALSE FALSE FALSE FALSE 4 74 Franzen, et al. 2008 Injured road users' experience of care in the emergency department. English Quantitative Survey Sweden Emergency FALSE FALSE FALSE FALSE 75 Hogberg, et al. 2008 Cesarean by choice? Empirical study of public attitudes. English Quantitative Survey Sweden Maternal Health FALSE FALSE FALSE FALSE 5 76 Anden, et al. 2010 What happened? GPs' perceptions of consultation outcomes and a comparison with the English Quantitative Survey Sweden PHC FALSE FALSE FALSE FALSE experiences of their patients. 6 77 Hildingsson, et al. 2011 Fathers' birth experience in relation to midwifery care. English Quantitative Survey Sweden Maternal Health FALSE FALSE FALSE FALSE 78 Haines, et al. 2013 The role of women's attitudinal profiles in satisfaction with the quality of their antenatal and English Quantitative Survey Sweden Maternal Health FALSE FALSE FALSE FALSE intrapartum care. 7 79 Sandlund & Hansson 1999 Patient satisfaction in a comprehensive sectorized psychiatric service: Study of a 1-year- English Quantitative Survey Sweden Mental Health/Addiction FALSE FALSE FALSE FALSE treated incidence cohort 8 80 Gåfvels & Lithner 1996 Insulin-treated diabetic patients: Use of, experience of and attitudes to diabetes care English Quantitative Survey Sweden Diabetes FALSE FALSE TRUE FALSE 81 Daerga, et al. 2012 The confidence in health care and social services in northern Sweden-A comparison English Quantitative Survey Sweden PHC FALSE TRUE FALSE FALSE 9 between reindeer-herding Sami and the non-Sami majority population. 82 Gustafsson, et al. 2016 Influence of self-care advice on patient satisfaction and healthcare utilization. English Quantitative Survey Sweden PHC TRUE FALSE FALSE FALSE 10 83 Ljung, et al. 2013 Patient experiences of a theory-based lifestyle-focused group treatment in the prevention English Qualitative Interview Sweden Diabetes FALSE FALSE FALSE FALSE of cardiovascular diseases and type 2 diabetes. 11 84 Aléx, et al. 2013 Being cold when injured in a cold environment - Patients' experiences English Qualitative Interview Sweden Emergency FALSE FALSE FALSE FALSE 85 Wiklund, et al. 2016 Access to rehabilitation: patient perceptions of inequalities in access to specialty pain English Qualitative Interview Sweden Pain FALSE FALSE FALSE FALSE 12 rehabilitation from a gender and intersectional perspective. 86 Gustafsson, et al. 2019 Patient Satisfaction With Telephone Nursing: A Call for Calm, Clarity,For and Competence. EnglishpeerQualitative Text analysis reviewSweden onlyGeneral TRUE FALSE FALSE FALSE 13 87 Alex, et al. 2013 Patients' experiences of cold exposure during ambulance care. English Qualitative Participant Interview Sweden Emergency FALSE FALSE FALSE FALSE observation 14 88 Skär & Söderberg 2018 Patients’ complaints regarding healthcare encounters and communication English Mixed-Methods Survey Text analysis Sweden General FALSE FALSE FALSE FALSE

15 89 Lindberg, et al. 2009 Parents' experiences of using videoconferencing as a support in early discharge after English Mixed-Methods Interview Survey Sweden Maternal Health TRUE FALSE TRUE FALSE childbirth. 16 90 Afifi, et al. 2005 Perceived need and help-seeking for mental health problems among Canadian provinces English Quantitative Survey Canada Mental Health/Addiction FALSE FALSE TRUE FALSE 91 Worthington, et al. 2010 HIV testing experiences of Aboriginal youth in Canada: service implications. English Quantitative Survey Canada Communicable Disease FALSE TRUE FALSE FALSE 17 92 Cano & Foster 2016 "They made me go through like weeks of appointments and everything": Documenting English Qualitative Interview Canada Maternal Health FALSE FALSE TRUE FALSE women's experiences seeking abortion care in Yukon territory, Canada.

93 Arnaert & Schaack 2006 Cultural awareness of Inuit patients' experiences with emergency nursing care. English Qualitative Interview Canada Emergency http://bmjopen.bmj.com/ FALSE TRUE TRUE FALSE 18 94 Oosterveer & Young 2015 Primary health care accessibility challenges in remote indigenous communities in English Qualitative Interview Canada PHC FALSE TRUE TRUE TRUE Canada's North. 19 95 Bird, et al. 2008 Living with diabetes on Baffin Island: Inuit storytellers share their experiences English Qualitative Interview Canada Diabetes FALSE TRUE TRUE TRUE 20 96 Fraser & Nadeau 2015 Experience and representations of health and social services in a community of Nunavik English Qualitative Interview Canada General FALSE TRUE TRUE FALSE 97 Hanrahan 2002 Identifying the needs of Innu and Inuit patients in urban health settings in Newfoundland English Qualitative Focus groups Interview Canada General FALSE TRUE TRUE FALSE 21 and Labrador. 98 Mendez, et al. 2013 The use of remote presence for health care delivery in a northern Inuit community: a English Mixed-Methods Interview Survey Canada General TRUE TRUE TRUE FALSE 22 feasibility study. 99 Quick & Bashshur 1991 Three perspectives on community health aides: surveys of health aides, consumers and English Quantitative Survey USA General FALSE FALSE TRUE FALSE 23 providers in western Alaska. 100 Hagopian, et al. 2000 The use of community surveys for health planning: the experience of 56 northwest rural English Quantitative Survey USA General FALSE FALSE TRUE FALSE communities. 24 101 DeCourtney 1998 Alaska Native community assessment: health care services, knowledge of health issues, English Quantitative Survey USA General FALSE FALSE TRUE FALSE and health education. 25 102 Lanier, et al. 1999 Pap prevalence and cervical cancer prevention among Alaska Native women. English Qualitative Interview USA Cancer FALSE FALSE FALSE FALSE 103 Driscoll, et al. 2010 Assessing the influence of health on rural outmigration in Alaska English Qualitative Interview USA General FALSE FALSE TRUE FALSE on October 1, 2021 by guest. Protected copyright. 26 104 DeMay 2003 The experience of being a client in an Alaska public health nursing home visitation English Qualitative Text analysis USA Maternal Health FALSE FALSE FALSE FALSE program. 27 105 Parret 2012 Meeting the needs of breast cancer survivors in Alaska: Survivors' and healthcare English Mixed-Methods Interview Survey USA Cancer FALSE FALSE TRUE FALSE providers' perspectives. 28 106 Wetterhall, et al. 2011 Cultural context in the effort to improve oral health among Alaska Native people: the dental English Mixed-Methods Interview Survey USA Dental FALSE TRUE TRUE TRUE health aide therapist model. 29 107 Pellikka, et al. 2003 Patients' views of good nursing care in an emergency unit Finnish Quantitative Survey Finland Emergency FALSE FALSE FALSE FALSE 108 Oikarinen, et al. 2000 Patient satisfaction with health care services via videoconferencing English Quantitative Survey Finland General TRUE FALSE FALSE FALSE 30 109 Mielonen, et al. 2000 Psychiatric inpatient care planning via telemedicine English Quantitative Survey Finland Mental Health/Addiction TRUE FALSE TRUE FALSE 31 110 Elsass, et al. 1994 [Greenlanders in hospital. An interview study of communication between patients and Danish Qualitative Interview Greenland General FALSE TRUE TRUE FALSE therapists, satisfaction and therapeutic preferences]. 111 Montgomery-Andersen, et al. 2010 There was no other way things could have been.' Greenlandic women's experiences of English Qualitative Interview Greenland Maternal Health FALSE TRUE TRUE FALSE 32 referral and transfer during pregnancy. 112 Hounsgaard, et al. 2013 Women's perspectives on illness when being screened for cervical cancer. English Qualitative Focus groups Interview Greenland Cancer FALSE TRUE FALSE FALSE 33 113 Aagaard 2017 Patient involvement in healthcare professional practice - a question about knowledge. English Qualitative Participant Text analysis Focus Interview Greenland Cancer FALSE TRUE TRUE FALSE observation groups 34 114 Fotaki 2006 Users' perceptions of health care reforms: Quality of care and patient rights in four regions English Quantitative Survey Russia General FALSE FALSE FALSE FALSE in the Russian Federation 35 115 Heiberg & Skurtveit 2005 Voices of women in North-West Russia - About maternity care Norwegian Quantitative Survey Russia Maternal Health FALSE FALSE FALSE FALSE 116 Kuznetsov, et al. 2013 Hopelessness as a basis for tuberculosis diagnostic delay in the Arkhangelsk region: A English Qualitative Focus groups Russia Communicable Disease FALSE FALSE TRUE FALSE 36 grounded theory study 117 Askham, et al. 2010 The information and support needs of Faroese women hospitalised with an acute English Qualitative Interview Faroe Emergency FALSE FALSE FALSE FALSE 37 coronary syndrome Islands 38 39 40 41 42 43 For peer review only - http://bmjopen.bmj.com/site/about/guidelines.xhtml 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60