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      “There are still a lot of things that I need”: a qualitative study exploring opportunities to improve the health services of First Nations People with arthritis seen at an on-reserve outreach rheumatology clinic

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          Abstract

          Background

          Arthritis is a highly prevalent disease and leading cause of disability in the Indigenous population. A novel model of care consisting of a rheumatology outreach clinic in an on-reserve primary healthcare center has provided service to an Indigenous community in Southern Alberta since 2010. Despite quality assessments suggesting this model of care improves accessibility and is effective in meeting treatment targets, substantial improvements in patient-reported outcomes have not been realized. Therefore, the objective of this study was to explore the experiences of Indigenous persons with arthritis and healthcare providers involved in this model of care to inform the development of health service improvements that enhance patient outcomes.

          Methods

          This was a narrative-based qualitative study involving a purposeful sample of 32 individuals involved in the Indigenous rheumatology model of care. In-depth interviews were conducted to elicit experiences with the existing model of care and to encourage reflections on opportunities to improve it. A two-stage analysis was conducted. The first stage aimed to produce a narrative synthesis of concepts through a dialogical method comparing people with arthritis and health providers’ narratives. The second stage involved a collective effort to synthesize concepts and propose specific recommendations to improve the quality of the current model of care. Triangulation, through participant checking and discussion among researchers, was used to increase the validity of the final recommendations.

          Results

          Ten Indigenous people with arthritis lived experience, 14 health providers and 8 administrative staff were interviewed. One main overarching theme was identified, which reflected the need to provide services that improve people’s physical and mental functioning. Further, the following specific recommendations were identified: 1) enhancing patient-provider communication, 2) improving the continuity of the healthcare service, 3) increasing community awareness about the presence and negative impact of arthritis, and 4) increasing peer connections and support among people living with arthritis.

          Conclusions

          Improving the quality of the current Indigenous rheumatology model of care requires implementing strategies that improve functioning, patient-provider communication, continuity of care, community awareness and peer support. A community-based provider who supports people while navigating health services could facilitate the implementation of these strategies.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s12913-020-05909-9.

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          Most cited references55

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          Saturation in qualitative research: exploring its conceptualization and operationalization

          Saturation has attained widespread acceptance as a methodological principle in qualitative research. It is commonly taken to indicate that, on the basis of the data that have been collected or analysed hitherto, further data collection and/or analysis are unnecessary. However, there appears to be uncertainty as to how saturation should be conceptualized, and inconsistencies in its use. In this paper, we look to clarify the nature, purposes and uses of saturation, and in doing so add to theoretical debate on the role of saturation across different methodologies. We identify four distinct approaches to saturation, which differ in terms of the extent to which an inductive or a deductive logic is adopted, and the relative emphasis on data collection, data analysis, and theorizing. We explore the purposes saturation might serve in relation to these different approaches, and the implications for how and when saturation will be sought. In examining these issues, we highlight the uncertain logic underlying saturation—as essentially a predictive statement about the unobserved based on the observed, a judgement that, we argue, results in equivocation, and may in part explain the confusion surrounding its use. We conclude that saturation should be operationalized in a way that is consistent with the research question(s), and the theoretical position and analytic framework adopted, but also that there should be some limit to its scope, so as not to risk saturation losing its coherence and potency if its conceptualization and uses are stretched too widely.
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            Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010

            Non-fatal health outcomes from diseases and injuries are a crucial consideration in the promotion and monitoring of individual and population health. The Global Burden of Disease (GBD) studies done in 1990 and 2000 have been the only studies to quantify non-fatal health outcomes across an exhaustive set of disorders at the global and regional level. Neither effort quantified uncertainty in prevalence or years lived with disability (YLDs). Of the 291 diseases and injuries in the GBD cause list, 289 cause disability. For 1160 sequelae of the 289 diseases and injuries, we undertook a systematic analysis of prevalence, incidence, remission, duration, and excess mortality. Sources included published studies, case notification, population-based cancer registries, other disease registries, antenatal clinic serosurveillance, hospital discharge data, ambulatory care data, household surveys, other surveys, and cohort studies. For most sequelae, we used a Bayesian meta-regression method, DisMod-MR, designed to address key limitations in descriptive epidemiological data, including missing data, inconsistency, and large methodological variation between data sources. For some disorders, we used natural history models, geospatial models, back-calculation models (models calculating incidence from population mortality rates and case fatality), or registration completeness models (models adjusting for incomplete registration with health-system access and other covariates). Disability weights for 220 unique health states were used to capture the severity of health loss. YLDs by cause at age, sex, country, and year levels were adjusted for comorbidity with simulation methods. We included uncertainty estimates at all stages of the analysis. Global prevalence for all ages combined in 2010 across the 1160 sequelae ranged from fewer than one case per 1 million people to 350,000 cases per 1 million people. Prevalence and severity of health loss were weakly correlated (correlation coefficient -0·37). In 2010, there were 777 million YLDs from all causes, up from 583 million in 1990. The main contributors to global YLDs were mental and behavioural disorders, musculoskeletal disorders, and diabetes or endocrine diseases. The leading specific causes of YLDs were much the same in 2010 as they were in 1990: low back pain, major depressive disorder, iron-deficiency anaemia, neck pain, chronic obstructive pulmonary disease, anxiety disorders, migraine, diabetes, and falls. Age-specific prevalence of YLDs increased with age in all regions and has decreased slightly from 1990 to 2010. Regional patterns of the leading causes of YLDs were more similar compared with years of life lost due to premature mortality. Neglected tropical diseases, HIV/AIDS, tuberculosis, malaria, and anaemia were important causes of YLDs in sub-Saharan Africa. Rates of YLDs per 100,000 people have remained largely constant over time but rise steadily with age. Population growth and ageing have increased YLD numbers and crude rates over the past two decades. Prevalences of the most common causes of YLDs, such as mental and behavioural disorders and musculoskeletal disorders, have not decreased. Health systems will need to address the needs of the rising numbers of individuals with a range of disorders that largely cause disability but not mortality. Quantification of the burden of non-fatal health outcomes will be crucial to understand how well health systems are responding to these challenges. Effective and affordable strategies to deal with this rising burden are an urgent priority for health systems in most parts of the world. Bill & Melinda Gates Foundation. Copyright © 2012 Elsevier Ltd. All rights reserved.
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              The use of triangulation in qualitative research.

              Triangulation refers to the use of multiple methods or data sources in qualitative research to develop a comprehensive understanding of phenomena (Patton, 1999). Triangulation also has been viewed as a qualitative research strategy to test validity through the convergence of information from different sources. Denzin (1978) and Patton (1999) identified four types of triangulation: (a) method triangulation, (b) investigator triangulation, (c) theory triangulation, and (d) data source triangulation. The current article will present the four types of triangulation followed by a discussion of the use of focus groups (FGs) and in-depth individual (IDI) interviews as an example of data source triangulation in qualitative inquiry.
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                Author and article information

                Contributors
                adalbert@ualberta.ca
                Journal
                BMC Health Serv Res
                BMC Health Serv Res
                BMC Health Services Research
                BioMed Central (London )
                1472-6963
                25 November 2020
                25 November 2020
                2020
                : 20
                : 1076
                Affiliations
                [1 ]GRID grid.17089.37, Division of Physical Medicine and Rehabilitation, Faculty of Medicine and Dentistry, , University of Alberta, ; Edmonton, Alberta Canada
                [2 ]GRID grid.414716.1, ISNI 0000 0001 2221 3638, Department of Rheumatology, Hospital General de Mexico “Dr. Eduardo Liceaga”, ; Mexico City, Mexico
                [3 ]GRID grid.22072.35, ISNI 0000 0004 1936 7697, Department of Family Medicine, Cumming School of Medicine, , University of Calgary, ; Calgary, Alberta Canada
                [4 ]GRID grid.17091.3e, ISNI 0000 0001 2288 9830, Division of Rheumatology, Faculty of Medicine, , University of British Columbia, ; Vancouver, British Columbia Canada
                [5 ]GRID grid.22072.35, ISNI 0000 0004 1936 7697, Departments of Medicine and Community Health Sciences, Cumming School of Medicine, , University of Calgary, ; Calgary, Alberta Canada
                [6 ]GRID grid.22072.35, ISNI 0000 0004 1936 7697, Department of Medicine, Cumming School of Medicine, , University of Calgary, ; Calgary, Alberta Canada
                [7 ]Siksika Health Services, Siksika Nation, Siksika, Alberta Canada
                Author information
                http://orcid.org/0000-0002-0082-2907
                Article
                5909
                10.1186/s12913-020-05909-9
                7687986
                33239042
                3f9fa400-5b2a-4cfe-9b47-3532ae08deca
                © The Author(s) 2020

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 1 June 2020
                : 9 November 2020
                Funding
                Funded by: The Arthritis Society (CA)
                Funded by: Canadian Initiative for Outcomes in Rheumatology Care
                Funded by: CIHR Banting Postdoctoral Fellowship
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

                Health & Social care
                indigenous peoples of canada,arthritis,models of care,qualitative methods
                Health & Social care
                indigenous peoples of canada, arthritis, models of care, qualitative methods

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