social and cultural aspects of living with type 2 diabetes...

Social and Cultural Aspects of Living with Type 2

Diabetes for Ethnic Minorities in Canada

by Peyman Namdarimoghaddam

Grad. Cert. (Science & Tech. Commercialization), Simon Fraser University, 2018

B.Sc. (with distinction), Simon Fraser University, 2017

Thesis Submitted in Partial Fulfillment of the

Requirements for the Degree of

Master of Science

in the

Master of Science Program

Faculty of Health Sciences

© Peyman Namdarimoghaddam 2020

SIMON FRASER UNIVERSITY

Spring 2020

Copyright in this work rests with the author. Please ensure that any reproduction or re-use is done in accordance with the relevant national copyright legislation.

ii

Approval

Name: Peyman Namdarimoghaddam

Degree: Master of Science

Title: Social and Cultural Aspects of Living with Type 2 Diabetes for Ethnic Minorities in Canada

Examining Committee: Chair: Travis Salway Assistant Professor

Scott A Lear Senior Supervisor Professor

Hasina Samji Supervisor Assistant Professor

Valorie Crooks Examiner Professor Department of Geography

Date Defended/Approved: April 30, 2020

iii

Ethics Statement

iv

Abstract

Diabetes is a chronic progressive disease that affects one in three Canadians

and ethnicity is one of its risk factors in Canada. Type 2 diabetes (T2DM) which

constitutes the vast majority of the cases, is highly impacted by social and cultural

factors. However, we know very little about how social and cultural factors impact living

with T2DM in for ethnic minorities in Canada. A systematic review of the existing

literature and survey-based assessment of patient perceptions were conducted. The

most important social and cultural determinants of health for patients were diabetes

education, social support, cultural competency of institutions (e.g. healthcare system, the

government), patient trust for institutions, perceptions of self, and the perception of

financial barriers. The social and cultural factors of importance can be understood in

three categories of (1) diabetes education, (2) perceptions of self and perceived relations

with others, (3) perceived financial constraints.

Keywords: type 2 diabetes; social; cultural; ethnic minority; Canada

v

Acknowledgements

I would like to express my gratitude for the opportunity to work within the Cities

Changing Diabetes program in Vancouver. This collaboration allowed me to take a novel

multidisciplinary approach towards describing and analyzing patient perspectives.

A big thank you to Novo Nordisk for providing partial funding towards the

Vancouver Diabetes Priorities Assessment (VDPA) which constitutes one of the main

studies in this thesis.

Many thanks to Veronica de Jong, Nisa Onsel, Emily Ross, Dr. Adeleke

Fowokan, and the staff at the Community Heart Research Team (CoHeaRT) who have

played an important role in my learning, participant recruitment, and data collection.

Special thanks to Dr. Anna Volkmann and Dr. Diane Finegood for their early

feedback on the ideation and planning of this thesis.

I would like to thank Dr. Greg Bondy; Aboriginal Mother Center Society, First

Nations Healing Circle, Native Health Clinic, The Lu’ma Medical Clinic, Praise in the

Park community church, and Diabetes Health Center, The John Ruedy

Immunodeficiency Clinic (IDC), and Healthy Heart Department at St. Paul’s Hospital for

assisting with recruitment efforts.

I would like to thank Heide Felton, Matthew Felton, and Melanie Ho whose

support has made my contribution to this research possible.

I am grateful for the continuous support of Dr. Scott Lear and Dr. Hasina Samji

who were at the forefront of my learning and provided me with extensive training and

feedback.

vi

Table of Contents

Approval ............................................................................................................................ ii Ethics Statement ............................................................................................................... iii Abstract ............................................................................................................................ iv Acknowledgements ........................................................................................................... v Table of Contents ............................................................................................................. vi List of Tables ................................................................................................................... viii List of Figures................................................................................................................... ix

Chapter 1. Introduction ................................................................................................ 1 1.1. Diabetes Mellitus ..................................................................................................... 1 1.2. Ethnicity ................................................................................................................... 1 1.3. Social and Cultural Factors ..................................................................................... 2 1.4. Urban Diabetes ....................................................................................................... 4 1.5. Purpose ................................................................................................................... 4 1.6. Structure .................................................................................................................. 5 1.7. Positionality Statement ............................................................................................ 5 1.8. References .............................................................................................................. 6

Chapter 2. A Summary of Current State of Knowledge: Social and Cultural Factors among Ethnic Minorities Living with Type 2 Diabetes in Canada - A Systematic Review .............................................................................................. 11

2.1. Abstract ................................................................................................................. 11 2.2. Introduction ........................................................................................................... 12 2.3. Methodology .......................................................................................................... 13 2.4. Results .................................................................................................................. 15

2.4.1. Indigenous ..................................................................................................... 15 2.4.2. Black ............................................................................................................. 16 2.4.3. South Asian ................................................................................................... 16 2.4.4. East Asian ..................................................................................................... 17

2.5. Discussion ............................................................................................................. 17 2.6. References ............................................................................................................ 20 2.7. Tables and Figures ............................................................................................... 26 2.8. Supplementary Material ........................................................................................ 40

Chapter 3. Patient Perspectives on Social and Cultural Aspects of Living with Type 2 Diabetes in a Heterogeneous Urban Population Using Q Methodology

................................................................................................................... 59 3.1. Abstract ................................................................................................................. 59 3.2. Introduction ........................................................................................................... 61 3.3. Methodology .......................................................................................................... 63 3.4. Results .................................................................................................................. 66 3.5. Discussion ............................................................................................................. 70 3.6. References ............................................................................................................ 73

vii

3.7. Tables ................................................................................................................... 77 3.8. Supplementary Material ........................................................................................ 81

Chapter 4. Discussions ............................................................................................. 88 4.1. Discussions ........................................................................................................... 88 4.2. References ............................................................................................................ 94

viii

List of Tables

Table 1-1-1 listing the social and cultural factors that impact life with T2DM. ................... 3 Table 2-1 Demonstrating keywords crossed with “Type 2 Diabetes” AND “Social OR

Cultural” ................................................................................................... 27 Table 2-2 Result of quality appraisals for eligible qualitative papers .............................. 28 Table 2-3 Result of quality appraisals for eligible cohort papers ..................................... 29 Table 2-4 Result of quality appraisals for eligible cross-sectional papers ....................... 30 Table 2-5 Summary of characteristics of eligible papers ................................................ 31 Table 2-6 Detailed characteristics of eligible papers ....................................................... 32 Supplementary I: Table 2-7 Areas of content covered in eligible papers categorized by

ethnicity ................................................................................................... 40 Supplementary II: Table 2-8 Data extracted from each eligible paper ............................ 41 Table 3-1 Characteristics of participants across different factor arrays .......................... 77 Table 3-2 Detailed statement rankings of each factor array ........................................... 79 Supplementary I: Table 3-4 The 64 statements used in the online sorting activity ......... 81 Supplementary II:Table 3-5 List of the social and cultural factors that impact life with

T2DM. ...................................................................................................... 84 Supplementary IV: Table 3-3 Characteristics of those who did versus those who did not

significantly load on the factor arrays ...................................................... 86

ix

List of Figures

Figure 1-1 Schematic demonstration of the intermediary role of social and cultural factors in the relationship between ethnicity with health-related behaviours as a part of lifestyle. ................................................................ 2

Figure 2-1 PRISMA chart showing the process of screening papers for this systematic review ...................................................................................................... 26

Supplementary III: Figure 3-1 structure of the thirteen-column matrix for the statement sorting activity .......................................................................................... 85

1

Chapter 1. Introduction

1.1. Diabetes Mellitus

Diabetes Mellitus (diabetes) affects more than 10.8 million Canadians (1) and

imposes a substantial burden on the healthcare system. An average 19 Canadians die

of diabetes every day (2) and the cost of diabetes and its complications exceed 10% of

the country’s annual healthcare budget (3; 1). The level of this burden is also on the rise

as the prevalence of diabetes in Canada is projected to grow by 21% by 2028 (4).

Diabetes is a chronic progressive disease that is characterized by the prolonged

presence of excessive levels of glucose in the blood. Diabetes often leads to micro- and

macro-vascular complications of the heart, kidneys, eyes, and lead to the amputation of

extremities of the body. The largest cause of mortality among diabetes patients is

cardiovascular complications. The prominent mechanisms underlying diabetes either

involve the inability of the beta cells of the pancreas to produce insulin (type 1) or the

inability of the tissue cells (e.g. muscles, liver) to take up glucose from the blood stream

(type 2). Type 2 diabetes (T2DM) constitutes the majority of diabetes cases (roughly 90

– 95%) and has risk factors that are primarily related to lifestyle.

1.2. Ethnicity

Ethnicity is a risk factor for T2DM. The largest visible ethnic minorities in Canada

are Indigenous, Black, East Asian, South Asian, and Southeast Asian communities,

many of whom are at an elevated risk for T2DM compared to the general population.

The age-standardized prevalence estimates for diabetes among Indigenous

communities are 17.2% among on-reserve First Nations, 10.3% among off-reserve First

Nations, 7.3% among Métis, compared to 5.0% in the general population (5). For

Canadians of Chinese origin, the age- and sex-standardized diabetes incidence

increased by 15 fold between 1996 and 2005 while it only rose by 24% in people with a

European background (6). People of South Asian descent living in Canada are three to

five times more likely to develop T2DM compared to the general population (7). The

odds of Black Canadian men and women being diagnosed with diabetes are 1.95 and

2.74 times that of their White counterparts (8).

2

Ethnicity is a complex multidimensional construct reflecting an interplay of

biological, geographical, cultural, economic, political and legal factors, as well as racism

(9). There are no universal tools to objectively measure ethnicity. This inability to

measure ethnicity is an especially important challenge in Canada, an ethnically diverse

country, where cross-ethnic influences and multi-ethnic families are common. There are

individuals whose genetic, social, and cultural aspects of ethnic identity might not always

align. For many people in Canada, the standard ethnic categories fail to capture the true

state of their ethnic identities. However, for the purposes of this thesis, we will consider

ethnicity to be a self-declared membership in a single group with a unique set of adopted

norms and practices.

1.3. Social and Cultural Factors

The unique norms and practices of each ethnic group constitute what is known

as their culture. These cultural factors together with social elements shape the lifestyle of

individuals, including their health-related behaviours. Figure 1 shows this relationship

schematically.

Figure 1-1 Schematic demonstration of the intermediary role of social and cultural

factors in the relationship between ethnicity with health-related behaviours as a part of lifestyle.

Previous studies have primarily examined the T2DM-related ethnic disparities

from biological (10), environmental (11), behavioural (12), and healthcare-related (13;

14) perspectives. The biological contributors to the ethnic disparity in T2DM include (but

are not limited to) glucose metabolism and insulin resistance (15; 16; 17; 18; 19; 20; 21),

Ethnicity

Lifestyle

Health-Related

Behaviours

Social Factors

Cultural Factors

3

obesity (10), genetics (22), and glycemic control (23; 24; 25). However, there has been

limited research on the social and cultural contributors to the ethnic disparities in T2DM.

Table 1 lists the cultural determinants of living with T2DM which comprise of

agency and opportunity, traditions and conventions, perceptions of health and illness,

ideas of self and other, change and transition (26). This table also lists the social

determinants of living with T2DM which comprise of financial, time, resource, and

geographical constraints (26). These factors determine patients’ abilities to partake in

healthy activities such as exercise and sourcing healthy foods (26).

Table 1-1-1 listing the social and cultural factors that impact life with T2DM.

Cultural Factors

Agency and Opportunity: How much of the decisions made by an individual are truly their own and whether they have the freedom to modify their own behaviours.

Traditions and Conventions: The unique practices of an ethnic group which may act as barriers to effective self-care, for example, by dictating gender roles or promoting unhealthy

diets. Perceptions of Health and Illness: Perceptions such as stigma attached to being diabetic

that can lead to poor care-seeking behaviours and resistance against lifestyle modifications. Ideas of Self and Other: How an individual perceives themselves compared to the

community around them can encourage or discourage healthy activities. For example, patients who see large body size as a norm in their community, may perceive slimming as

unnecessary. Change and Transition: Rapidly growing and changing environments can cause significant

levels of stress which lead to poor health outcomes.

Social Factors

Financial Constraints: Reduce patients’ abilities to pay for health resources. Time Constraints: Family and work commitments take away from one’s ability to attend

healthy activities. Resource Constraints: Low levels of education and a lack of availability of or a lack of

awareness about healthcare resources which prevent patients from being able to access healthy activities.

Geographical Constraints: Unfavorable climate, pollution, high crime levels, or lack of infrastructure that act as barriers to healthy activities (e.g. outdoor exercise).

As a part of this thesis, I will comment on the dual (objective and perceived)

nature of some of the social and cultural factors listed above. Many of the social and

cultural factors can be seen from an objective or perceived perspective. The measures

of the two perspectives may not always align. For example, the objective measure of

financial constraints would be the amount of a patient’s annual income in dollars,

whereas, the perceived nature of their financial constraints would be a self-reported

assessment of the level of financial barriers they are facing to care. The findings of these

two measures may indicate different and sometimes conflicting findings. Moreover, there

4

are other factors that are solely perceived in nature. For example, the cultural factor,

perceptions of health and illness, only takes into account the perceived aspect of the

factor. Previous research has demonstrated that both objective (27) and perceived (28)

barriers to care have a real impact on diabetes health outcomes.

1.4. Urban Diabetes

Approximately two-thirds of all people with diabetes live in urban environments

(29). Despite the many benefits that cities provide, such as access to education,

healthcare, and employment, cities have seen an increased burden of diabetes (30).

Some of this increased burden may be explained through sedentary lifestyles (31; 32),

consumption of energy-dense foods (33; 34), and low levels of physical activity (35; 36)

in the urban environment.

This thesis was conducted in parallel to the Cities Changing Diabetes (CCD)

global initiative which was structured to understand the driving socio-cultural factors

behind the rise of diabetes in urban areas (37). The Canadian member city of this

initiative was Vancouver, BC. Vancouver was commonly thought of as a health-

conscious city, however, according to a new analysis coordinated by CCD, almost 10%

of the population are living with diabetes, one quarter of which are yet to be diagnosed

(38). Importantly, the prevalence of diabetes in Vancouver has been shown to differ

greatly between neighbourhoods. Estimates show the prevalence in the more affluent

Westside of Vancouver to be only 5.2%, whereas it is 7.8% in the Downtown Eastside,

and as high as 10.1% in South Vancouver. In this city, socioeconomic status, ethnicity,

and community environment intersect with many other complex factors to determine

diabetes risk (39; 40).

1.5. Purpose

The purpose of this thesis was to provide a comprehensive account of social and

cultural aspects of living with T2DM in the ethnic minorities of Indigenous, Black, East

Asian, South Asian, and Southeast Asian communities in Canada. The aims of this

thesis were:

5

1. To summarize the existing literature on the social and cultural aspects of living

with T2DM for ethnic minorities in Canada.

2. To investigate patient perspectives on social and cultural aspects of living with

T2DM in an urban environment in Canada (Vancouver).

1.6. Structure

The next chapter, chapter 2, will present a systematic review of the existing

literature on the previously published relevant papers. This review will be conducted via

the use of a keyword search strategy across multiple databases. The following chapter,

chapter 3, will present the findings of a survey-based primary research that employed Q

methodology. The findings of this study will present the subjective perceptions of T2DM

patients from ethnic groups of interest on a wide array of social and cultural factors

concerning health, well-being, and diabetes. Finally, the last chapter of this thesis,

chapter 4, will discuss the findings of the two previous studies and highlight their

implications. This thesis will be concluded by providing a set of recommendations for

future programs and services to help reduce the gap in the quality of health care and

health outcomes for the ethnic minorities of interest with T2DM in Canada.

1.7. Positionality Statement

I am a male immigrant to Canada in my mid 20s from a Persian background. My

personal experience with diabetes has been limited to observing my family members’

journeys with T2DM. Their struggle with the management of diabetes has made me

aware of the acute and chronic health implications of living with T2DM. However, my

understanding of other ethnic groups’ unique needs and perspectives around diabetes

remain limited. Furthermore, during my time in Canada I have only lived in an urban

environment. Health care-related challenges that might be faced by individuals living in

rural and reserve communities have not been a part of my personal experience. These

elements affect my worldviews and may have played a part in the discussion and

interpretation of my findings in this thesis.

6

1.8. References

1. Diabetes Atlas, Eighth Edition Committee. IDF Diabetes Atlas - 8th Edition. 2017.

2. Standing Committee on Health. A Diabetes Strategy for Canada. Ottawa : House of

Commons, April 2019.

3. Canadian Institute for Health Information. National Health Expenditure Trends, 1975

to 2018 . 2018.

4. Diabetes Canada. Diabetes 360º: A Framework for a Diabetes Strategy for Canada.

2018.

5. Chronic Disease Surveillance and Monitoring Division, Centre for Chronic Disease

Prevention and Control. Diabetes in Canada: Facts and figures from a public

health perspective. Ottawa, ON : Public Health Agency of Canada, 2011.

6. Rapid Increase in Diabetes Incidence Among Chinese Canadians Between 1996 and

2005 . Avreet Alangh, Maria Chiu, Baiju R. Shah. May 2013, Diabetes Care, p.

DC_130052.

7. Prevention and Management of Diabetes in South Asians. S.Sohal, Parmjit. 3, 2008,

Canadian Journal of Diabetes, Vol. 32, pp. 206-210 .

8. Black–White Health Inequalities in Canada. Patterson, Gerry Veenstra & Andrew C.

2016, Journal of Immigrant and Minority Health, Vol. 18, pp. 51–57.

9. Race and health: basic questions, emerging directions. DR, Williams. 5, 1997, Ann

Epidemiol., Vol. 7, pp. 322-33.

10. Race/Ethnic Difference in Diabetes and Diabetic Complications. Elias K. Spanakis,

Sherita Hill Golden. 6, 2013, Curr Diab Rep., Vol. 13.

11. Neighborhood resources for physical activity and healthy foods and incidence of type

2 diabetes mellitus: the Multi-Ethnic study of Atherosclerosis. Auchincloss AH,

7

Diez Roux AV, Mujahid MS, Shen M, Bertoni AG, Carnethon MR. 18, 2009, Arch

Intern Med., Vol. 169, pp. 1698-704.

12. Racial and ethnic disparities in self-monitoring of blood glucose among US adults: a

qualitative review. Kirk JK, Graves DE, Bell RA, Hildebrandt CA, Narayan KM. 1,

2007, Ethn Dis., Vol. 17, pp. 135-42.

13. Use of diabetes preventive care and complications risk in two African-American

communities. Gregg EW, Geiss LS, Saaddine J, Fagot-Campagna A, Beckles G,

Parker C, Visscher W, Hartwell T, Liburd L, Narayan KM, Engelgau MM. 3, 2001,

Am J Prev Med. , Vol. 21, pp. 197-202. .

14. The influence of outpatient insurance coverage on the microvascular complications

of non-insulin-dependent diabetes in Mexican Americans. Pugh JA, Tuley MR,

Hazuda HP, Stern MP. 4, 1992, J Diabetes Complications. , Vol. 6, pp. 236-41. .

15. Health disparities in endocrine disorders: biological, clinical, and nonclinical factors--

an Endocrine Society scientific statement. Golden SH, Brown A, Cauley JA, Chin

MH, Gary-Webb TL, Kim C, Sosa JA, Sumner AE, Anton B. 9, 2012, J Clin

Endocrinol Metab., Vol. 97, pp. E1579-639.

16. Increased insulin resistance and insulin secretion in nondiabetic African-Americans

and Hispanics compared with non-Hispanic whites. The Insulin Resistance

Atherosclerosis Study. Haffner SM, D'Agostino R, Saad MF, Rewers M,

Mykkänen L, Selby J, Howard G, Savage PJ, Hamman RF, Wagenknecht LE. 6,

1996, Diabetes, Vol. 45, pp. 742-8.

17. Independent association of insulin resistance with larger amounts of intermuscular

adipose tissue and a greater acute insulin response to glucose in African

American than in white nondiabetic women. Albu JB, Kovera AJ, Allen L,

Wainwright M, Berk E, Raja-Khan N, Janumala I, Burkey B, Heshka S, Gallagher

D. 6, 2005, Am J Clin Nutr., Vol. 82, pp. 1210-7.

8

18. Influence of ethnicity and familial diabetes on glucose tolerance and insulin action: a

physiological analysis. Ferrannini E, Gastaldelli A, Matsuda M, Miyazaki Y, Pettiti

M, Glass L, DeFronzo RA. 7, 2003, J Clin Endocrinol Metab., Vol. 88, pp. 3251-7.

.

19. Ethnic differences in insulin sensitivity and beta-cell function in premenopausal or

early perimenopausal women without diabetes: the Study of Women's Health

Across the Nation (SWAN). . Torréns JI, Skurnick J, Davidow AL, Korenman SG,

Santoro N, Soto-Greene M, Lasser N, Weiss G, Study of Women's Health Across

the Nation (SWAN). 2, 2004, Diabetes Care. , Vol. 27, pp. 354-61.

20. Comparison of measured and estimated indices of insulin sensitivity and beta cell

function: impact of ethnicity on insulin sensitivity and beta cell function in

glucose-tolerant and normotensive subjects. Chiu KC, Chuang LM, Yoon C. 4,

2001, J Clin Endocrinol Metab. , Vol. 86, pp. 1620-5.

21. Increased in vivo insulin resistance in nondiabetic Pima Indians compared with

Caucasians. Nagulesparan M, Savage PJ, Knowler WC, Johnson GC, Bennett

PH. 11, 1982 , Diabetes, Vol. 31, pp. 952-6. .

22. Genomics, type 2 diabetes, and obesity. MI, McCarthy. 24, 2010, N Engl J Med., Vol.

363, pp. 2339-50.

23. Ethnic disparities: control of glycemia, blood pressure, and LDL cholesterol among

US adults with type 2 diabetes. Kirk JK, Bell RA, Bertoni AG, Arcury TA, Quandt

SA, Goff DC Jr, Narayan KM. 9, 2005, Ann Pharmacother. , Vol. 39, pp. 1489-

501. .

24. Review Disparities in HbA1c levels between African-American and non-Hispanic

white adults with diabetes: a meta-analysis. Kirk JK, D'Agostino RB Jr, Bell RA,

Passmore LV, Bonds DE, Karter AJ, Narayan KM. 9, 2006 , Diabetes Care. , Vol.

29, pp. 2130-6.

9

25. Disparities in A1C levels between Hispanic and non-Hispanic white adults with

diabetes: a meta-analysis. Kirk JK, Passmore LV, Bell RA, Narayan KM,

D'Agostino RB Jr, Arcury TA, Quandt SA. 2, 2008 , Diabetes Care. , Vol. 31, pp.

240-6. .

26. Cities Changing Diabetes. Urban Diabetes: Understanding the Challenges and

Opportunities. s.l. : Novo Nordisk, 2015.

27. Individual and community-level income and the risk of diabetes rehospitalization

among women and men: a Canadian population-based cohort study. Gupta N,

Crouse DL, Balram A. 1, Jan 14, 2020, BMC Public Health, Vol. 20, p. 60.

28. Association Between Perceived Barriers to Diabetes Self-management and Diabetic

Retinopathy in Asian Patients With Type 2 Diabetes. Man, R. E. K., Fenwick, E.

K., Gan, A. T. L., Sabanayagam, C., Gupta, P., Aravindhan, A., … Lamoureux, E.

L. 12, 2017, JAMA Ophthalmology, Vol. 135, p. 1387.

29. International Diabetes Federation. IDF Diabetes Atlas, 7th edition. Brussels :

International Diabetes Federation, 2015.

30. —. International Diabetes Federation Atlas. s.l. : International Diabetes Federation,

2017.

31. Sedentary lifestyle and risk of obesity and type 2 diabetes. FB, Hu. 2, February

2003, Lipids, Vol. 38, pp. 103–108.

32. Physical activity, sedentary behaviors and the incidence of type 2 diabetes mellitus:

the Multi-Ethnic Study of Atherosclerosis (MESA). Joseph, J. J., Echouffo-

Tcheugui, J. B., Golden, S. H., Chen, H., Jenny, N. S., Carnethon, M. R., …

Bertoni, A. G. 1, 2016, BMJ Open Diabetes Research & Care, Vol. 4, pp.

10.1136/bmjdrc-2015-000185.

33. Obesity, insulin resistance and diabetes—a worldwide epidemic. Seidell, J. C. S1,

2000, British Journal of Nutrition, Vol. 83, pp. S5-S8.

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34. Dietary Energy Density Predicts the Risk of Incident Type 2 Diabetes. Jing Wang,

Robert Luben, Kay-Tee Khaw, Sheila Bingham, Nicholas J. Wareham, and Nita

G. Forouhi. 11, 2008, Diabetes Care, Vol. 31, pp. 2120–2125.

35. Daily physical activity and type 2 diabetes: A review. Hamasaki, Hidetaka. 12, 2016,

World Journal of Diabetes, Vol. 7, pp. 243–251.

36. Exercise and Type 2: Diabetes The American College of Sports Medicine and the

American Diabetes Association: joint position statement. Sheri R. Colberg,

Ronald J. Sigal, Bo Fernhall, Judith G. Regensteiner, Bryan J. Blissmer, Richard

R. Rubin, Lisa Chasan-Taber, Ann L. Albright, and Barry Braun. 12, 2010,

Diabetes Care, Vol. 33, pp. e147–e167.

37. Cities Changing Diabetes. Bending the Curve on Urban Diabetes. s.l. : Novo

Nordisk, 2017.

38. InSource. Rule of Halves Analysis. Vancouver : Cities Changing Diabetes, 2016.

39. Ethnic differences in the relationships between obesity and glucose-metabolic

abnormalities: a crosssectional population-based study. Razak, F., Anand, S.,

Vuksan, V., Davis, B., Jacobs, R., Teo, K. K., & Yusuf, S. 6, 2005, International

Journal of Obesity, Vol. 29, p. 656.

40. The relationship between waist circumference and metabolic risk factors: cohorts of

European and Chinese descent. Lear, S. A., Chen, M. M., Frohlich, J. J., &

Birmingham, C. L. 11, 2002, Metabolism-Clinical and Experimental, Vol. 51, pp.

1427–1432.

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Chapter 2. A Summary of Current State of Knowledge: Social and Cultural Factors among Ethnic Minorities Living with Type 2 Diabetes in Canada - A Systematic Review

2.1. Abstract

Background: Type 2 diabetes (T2DM) disproportionately affects ethnic minorities

in Canada. Previous research on T2DM and ethnicity has primarily focused on the

biological and socioeconomic factors. However, this study will summarize available

evidence on social and cultural aspects of living with T2DM among ethnic minorities in

Canada.

Methods: Studies that were included examined a social or cultural factor among

ethnic minorities of interest with T2DM in Canada. CINAHL, WoS, and MEDLINE

databases were used to conduct a keyword search. Two reviewers used PRISMA

guidelines to independently shortlist the papers. CASP checklists were used to assess

the quality of the papers and Cochrane and Joanna Briggs Institute (JBI) forms were

used to extract data.

Results: A set of 22 papers were shortlisted from the 32,138 that matched our

criteria. It was found that, in the Indigenous communities, diabetes knowledge was

limited, patients were subject to post-colonial practices, and family remained the best

source of social and emotional support. In the South Asian communities, patients

believed that diabetes management was impossible, Western medicine was inadequate

for their cultural needs, and female family members remained a great source of social

support. In the East Asian communities, there was a sense of stigma around insulin

injection and patients did not trust Western medicine.

Interpretation: Limited diabetes knowledge, complaints of inadequate cultural

competency in Western medicine, and the positive value of social support was evident in

all groups. Each ethnic minority in Canada has different needs which require tailored,

culturally appropriate approaches to address them.

12

2.2. Introduction

More than 3.4 million Canadians currently live with diabetes, (1) constituting

9.3% of the general population. Canada spends roughly $21 billion per year on diabetes

and diabetes-related health complications, (9.9% of the country’s annual health

spending) (2; 3). Despite this spending, diabetes remains a chronic progressive disease

and claims 15,700 adult lives in Canada every year (3).

It has been estimated that 90% to 95% of diabetes cases among Canadians are

type 2 (4) and the risk factors for type 2 diabetes are heavily lifestyle-based. A non-

exhaustive list of these risk factors includes obesity (5), poor diet (6; 7), sedentary time

(8), and level of exercise (9). Many of the lifestyle-based risk factors have deep roots in

social and cultural identities of individuals. As a result, diabetes does not affect all

Canadians uniformly.

Ethnicity often represents different social and cultural identities and it has been

identified as a risk factor for diabetes. People of First Nations (10), Chinese (11), and

South Asian (12) communities have been found to be at a disproportionately higher risk

for developing diabetes when compared to the Caucasian population in Canada.

Ethnicity consists of two distinct components: genetic differences and sociocultural

factors. Many studies have previously examined the genetic differences between ethnic

groups leading to type 2 diabetes susceptibility (13), however, little has been done to

investigate the sociocultural factors.

Social and cultural factors affect type 2 diabetes by shaping individuals’

understanding of diabetes and their long-term behaviours. Cultural determinants of living

with type 2 diabetes comprise of agency and opportunity, traditions and conventions,

perceptions of health and illness, ideas of self and other, change and transition. Social

determinants of living with type 2 diabetes comprise of financial, time, resource, and

geographical constraints. Each ethnic group’s unique social and cultural understanding

of the world leads to their unique understanding of diabetes. It is the complex interaction

of this understanding of the disease, long-term behaviours, and available resources that

determine a patient’s health outcomes and quality of care experience.

This study will provide a review of the existing knowledge available on the social

and cultural aspects of living with type 2 diabetes among the largest visible ethnic

13

minorities (Indigenous, Black, East Asian, South Asian, and Southeast Asian) in

Canada.

2.3. Methodology

Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA)

was used as a guideline (14). A review protocol was registered with PROSPERO

(registration number: CRD42018115617). Cumulative Index to Nursing and Allied Health

Literature (CINAHL), Web of Science (WoS) and Medical Literature Analysis and

Retrieval System (MEDLINE) databases were used to search for keywords for each

ethnic group as listed in Table 1. The ethnicity keywords were crossed with the terms:

“Type 2 Diabetes” AND “Social OR Cultural”. The search was limited to papers

published up to Dec 6th, 2018.

The inclusion criteria were as follows: studies that (a) examined at least one

social or cultural factor as one of the objectives of the study, (b) examined a population

in Canada, (c) included at least one of the ethnic groups of interest (Indigenous, Black,

East Asian, South Asian, and Southeast Asian) as defined by each study, (d) focused on

a population with type 2 diabetes (must satisfy at least one of the following conditions:

Self-report; on hypoglycemic medications; FPG ≥ 7.0 mmol/L; A1C ≥ 6.5%; 2hPG in a 75

g OGTT ≥ 11.1 mmol/L; Random PG ≥ 11.1 mmol/L). The exclusion criteria were as

follows: (a) studies that were written in a language other than English, (b) works in

progress, conference abstracts, and incomplete papers, (c) review papers and

intervention studies. The search strategy had two steps. The first step identified a large

set of papers that examined at least one of the minority groups of interest in Canada

regarding a T2DM-related topic. The second step of the search strategy involved two of

the authors (PN and NO) reviewing all the titles and abstracts together to (a) determine

each paper’s focus on social or cultural factors, (b) validate the T2DM definitions, and (c)

exclude any papers that met the exclusion criteria.

Quality assessments were conducted using the Critical Appraisal Skills Program

(CASP) Guidelines for qualitative (15) and cohort (16) studies. Two reviewers conducted

the quality assessments independently (PN and NO). The scoring system used in this

14

study assigned a score of 1 to every “YES”, a score of 0 to every “Undetermined”, and a

score of -1 to every “NO” answer. The scores from both reviewers were summed to

determine the final quality score for each paper.

Data extraction was conducted by one of the authors (PN). For extracting data

from qualitative studies and quantitative studies Cochrane (17) and Joanna Briggs

Institute (JBI) (18) data extraction forms were used, respectively. For mixed methods

studies, both forms were used.

Data analysis was conducted using thematic analysis. The main themes

discussed in each paper were identified. These themes were re-structured into the

categories of social and cultural factors and then into the sub-categories: social sub-

categories (financial constraints, time constraints, resource constraints, geographical

constraints) and cultural sub-categories (agency and opportunity, traditions and

conventions, health and illness, change and transition, self and other). Themes could be

assigned to multiple sub-categories.

Once a list of all the themes pertaining to each sub-category was generated, the

extracted data relating to each theme were used to generate an outline of the contents

to be presented in that section. The outline was used to identify any correlation and/or

contradictions in the findings across different papers. Elaborations on the content of

each theme were produced and correlations/contradictions were highlighted to generate

the results sections. The thematic analysis was conducted one of the authors (PN).

Discussions started with a summary of the findings, followed by positioning these

findings in the greater landscape of literature, and concluded by identifying the existing

gaps in knowledge. Finally, recommendations were made pertaining to better clinical,

policy, community, and research practices.

15

2.4. Results

A total of 32,138 papers matched our search. A final list of 22 papers were

generated based on the inclusion and exclusion criteria (Figure 1). Critical appraisals

were conducted (Tables 2, 3, 4), with quality scores ranging between 72.7% and 95.0%.

No papers were excluded as a result of the appraisals.

The majority of papers were published after 2006 (77.3%), used qualitative

methodologies (59.1%), or focused on Indigenous groups (68.2%) (Table 5). We found

no studies on the Southeast Asian community in Canada and only one study (4.5%) on

the East Asian community. More than half of the studies (63.6%) included an urban

population. Patients from Ontario, British Columbia, and Manitoba consisted the target

populations for 86.4% of the studies.

2.4.1. Indigenous

Diabetes knowledge was limited in Indigenous communities (19; 20; 21; 22).

Access to health services and diabetes education were challenging due to geographic

isolation and financial constraints (19; 23; 20). A group of 20 urban Indigenous patients

with T2DM attributed diabetes to alcohol, genetics, eating too many sweets, obesity,

arrival of the “White man”, and dietary changes from traditional to processed foods (22).

They adhered to an understanding of diabetes which was characterized by the

inevitability of developing diabetes and virulent progression of a disease that defied

personal and professional control (22).

A group of First Nations patients believed that “Western medicine” was not

sufficient in meeting all their needs (20). They, much like the broader Indigenous

community, reported experiencing an assembly-line approach where primary care was

reduced to referrals and prescriptions (24; 20). Patients across multiple Indigenous

communities reported exposure to post postcolonial practices in the healthcare system

by the ways of authority, control, and unilateral decision-making (23; 24). Many

Indigenous patients found health services intimidating and led to cases of resistance

against treatment plans (23; 19). A group of rural patients reported seeking refuge in

their traditional foods and medicinal plants to manage their diabetes (25).

16

Close family remained the best source of social and emotional support (26) (23)

(27). This support helped many overcome feelings of shame, isolation, guilt,

hopelessness, defeat, anger, depression, and fear as related to diabetes diagnosis and

management (28; 19; 20; 22). Peer groups helped motivate individuals to be more

physically active (28).

2.4.2. Black

A study with 11 participants reported the level of knowledge and awareness

about type 2 diabetes to be limited in the black community. This limitation prevented

many from seeking timely medical attention and led to significant diabetes complications.

The lack of knowledge also resulted in feelings of shock and fear upon diagnosis as

patients did not understand the etiology and prognosis of the disease (29).

A larger study with 102 participants indicated the patients’ preference to receive

care outside the traditional setting of “Western medicine” such as hospitals and move

towards community health centers (30). Patients were generally engaged in their own

care and their use of healthcare resources were at a considerably high level (30).

2.4.3. South Asian

Diabetes knowledge was limited in South Asian communities. Access to health

services and diabetes education were limited due to geographic isolation, lack of free

time, financial constraints, and patient illiteracy (31; 32). A group of patients believed that

long-term management of diabetes was impossible (31). Even those who achieved

glycemic control thought that their diabetes was cured, and thus stopped following their

treatment plans (31). Another group reported the belief that their sole responsibility was

to follow the course of their prescribed medications (32).

Western medicine did not meet the needs of the South Asian communities either.

Patients found their physicians to be non-culturally competent (32). The clinical

guidelines did not inform the traditionally prepared foods of this community which were

often buffet-style with deep fried meals and sweets (31) (33). Dietary management was

the primary challenge of this community.

17

South Asian patients received substantial support from family and friends (34),

however, this support was a gender-based experience. Women in the South Asian

community reported receiving limited social support and experienced feelings of self-

blame (34). They were typically the meal-preparer at home who bore the responsibility

for dietary modifications upon diagnosis of a male in the family (32). When they were

diagnosed themselves, they often had to cook a second dish for each meal (31).

2.4.4. East Asian

Diabetes knowledge was an issue in the East Asian community. A group of

patients believed that the prescription of insulin injection indicated a past failure to

properly care for oneself (35). They worried about the inconvenience of getting injections

and had a fear of losing their personal freedom (35).

There was a sense of mistrust towards Western medicine in this community. A

group of East Asian patients found physicians in the healthcare system to be non-

culturally competent. Hence, they resorted to the more familiar system, Chinese

medicine (35).

2.5. Discussion

The purpose of this study was to provide an overview of the existing knowledge

on social and cultural aspects of living with type 2 diabetes for ethnic minorities in

Canada. Our findings indicate the identification of three main areas: diabetes knowledge,

cultural compatibility of Western medicine, and social support. We found evidence of

limited diabetes knowledge in all ethnic groups, complaints of inadequate cultural

competency in Western medicine, and the value of substantial presence of social

support from family, friends, and peer groups.

Researchers reported limited diabetes knowledge among all ethnic groups. This

limited knowledge was a result of challenges such as geographic isolation, financial

constraints, time constraints, and limited literacy which affected patients’ ability to access

diabetes education. Similar findings were reported among diabetes patients of Hispanic

origin in the United States (36), Pacific Islands people in Auckland (37), Vietnamese

women in Australia (38), and non-native Norwegian speakers in Norway (39). These

18

groups demonstrated less knowledge about diabetes and diabetes-related complications

compared to their non-minority counterparts. These studies also reported challenges

around linguistic and cultural literacy which contributed to the limited diabetes knowledge

among all ethnic minorities.

There was a varying degree of mistrust towards Western medicine among all

ethnic minorities. Non-culturally competent providers of care were at the core of this

mistrust. Many patients experienced an assembly-line approach in their care and were

subject to what they perceived as colonial practices of authority such as unilateral

decision making. The same findings were also reported in the United States where

ethnic minorities had less positive perceptions of their physicians (40) and France where

racialized care was provided to patients of ethnic minorities (41).

Social support was an important part of Indigenous and South Asian groups’

experience with diabetes management. There was a shortage of evidence on East

Asian, Southeast Asian, and Black groups regarding social support. Findings of this

paper are in agreement with previous Canadian studies in the area of oral health which

found great social support available to ethnic minorities (42). Similar findings were

reported in the United States among the elderly from ethnic minorities preventing death

or hospital readmission (43).

The results of this paper demonstrate that the needs of different ethnic minorities

in Canada are vastly similar with respect to needing more culturally competent care and

education. However, the best way to address these needs might differ for each group.

There is room for capacity building in primary care and diabetes education to engage

friends and families of patients. Friends and families are already an existing part of

patients’ informal care. Their engagement in the formal healthcare system is a matter of

acknowledging them as legitimate stakeholders in delivery of patient care and education.

This legitimization combined with a more culturally competent care structure could allow

for reconciliation of patient’s perceived forces of Western medicine with their personal

experience of diabetes. This reconciliation could lead to establishing a more honest

relationship with patients based on trust and mutual understanding.

The primary strength of this study was in its comprehensive search for all

relevant papers across multiple databases despite the limitations of conventional

19

keywords to search for social and cultural elements of care. This strength allowed us to

provide a comprehensive profile of existing state of knowledge. However, the primary

shortcoming of this study was that the papers included were not uniformly similar in their

design or reporting, which made direct comparison challenging. Nevertheless, the

insights provided in this paper followed a rigorous thematic analysis approach in their

methodology and included studies from the realms of quantitative and qualitative

research.

In conclusion, Canada needs to provide more diabetes education to ethnic

minorities, improve the cultural competence of primary care and diabetes education

programs, and capitalize on the social and emotional support available to patients from

friends and family. Cultural competency of care providers is at the core of cultural needs

of ethnic minorities in Canada. Further research is needed to examine what strategies

could be used to identify the social and cultural needs of each patient and how best to

address them.

20

2.6. References

1. Diabetes Canada. Diabetes Statistics in Canada. [Online] 2015. [Cited: 07 26, 2018.]

http://www.diabetes.ca/how-you-can-help/advocate/why-federal-leadership-is-

essential/diabetes-statistics-in-canada#_ftn1.

2. Canadian Institute for Health Information. National Health Expenditure Trends, 1975

to 2016. Ottawa : Canadian Institute for Health Information, 2016.

3. International Diabetes Federation. International Diabetes Federation Atlas. s.l. :

International Diabetes Federation , 2015.

4. Diabetes mellitus: complications and therapeutics. Tripathi BK, Srivastava AK. 7,

2006, Med Sci Monit., Vol. 12, pp. RA130–147.

5. Obesity genes and insulin resistance. Belkina AC, Denis GV. 5, 2010, Curr Opin

Endocrinol Diabetes Obes., Vol. 17, pp. 472–477.

6. A prospective study of whole-grain intake and risk of type 2 diabetes mellitus in US

women. Liu S, Manson JE, Stampfer MJ, Hu FB. et al. 9, 2000, Am J Public

Health., Vol. 90, pp. 1409–1415.

7. Diet and risk of type II diabetes: the role of types of fat and carbohydrate. Hu FB, van

Dam RM, Liu S. 2001, Diabetologia, Vol. 44, pp. 805–817.

8. Global and societal implications of the diabetes epidemic. Zimmet P, Alberti KG, Shaw

J. 6865, 2001, Nature, Vol. 414, pp. 782–787.

9. lifestyle, and the risk of type 2 diabetes mellitus in women. Hu FB, Manson JE,

Stampfer MJ. et al. 11, 2001, N Engl J Med., Vol. 345, pp. 790–797.

10. Public Health Agency of Canada. Diabetes in Canada: Facts and figures from a

public health perspective. Ottawa : Public Health Agency of Canada, 2011.

21

11. Rapid Increase in Diabetes Incidence Among Chinese Canadians Between 1996

and 2005 . Avreet Alangh, Maria Chiu, Baiju R. Shah. May 2013, Diabetes Care,

p. DC_130052.

12. Diabetes Canada. Do genes or ethnicity determine your diabetes risk factor?

Diabetes Canada. [Online] Dec 12, 2014. [Cited: Nov 19, 2017.]

https://www.diabetes.ca/publications-newsletters/diabetes-current-

newsletter/diabetes-current-archive/diabetes-current-december-2014/research-

in-progress/do-genes-or-ethnicity-determine-your-diabetes-risk.

13. Diabetes, genetics and ethnicity. . Carulli, L., Rondinella, S., Lombardini, S., Canedi,

I., Loria, P. and Carulli, N. 2005, Alimentary pharmacology & therapeutics, Vol.

22, pp. 16-19.

14. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA

statement. Moher D, Liberati A, Tetzlaff J, Altman DG. 4, s.l. : Annals of internal

medicine, 2009, Vol. 151. 264-9.

15. Critical Appraisal Skills Programme. CASP Qualitative Checklist. [Online] 2018.

https://casp-uk.net/wp-content/uploads/2018/03/CASP-Qualitative-Checklist-

2018_fillable_form.pdf.

16. —. CASP Cohort Study Checklist. [Online] 2018. https://casp-uk.net/wp-

content/uploads/2018/03/CASP-Cohort-Study-Checklist-2018_fillable_form.pdf.

17. Adherence to tuberculosis treatment: a qualitative systematic review of stakeholder

perceptions. Munro S, Lewin S, Smith H, Engel M, Fretheim A, Volmink J. 7,

2007, PLOS Medicine, Vol. 4, p. e238.

18. Joanna Briggs Institute Reviewer's Manual. The Joanna Briggs Institute. [ed.] Munn

Z Aromataris E. 2017.

19. Exploring structural barriers to diabetes self-management in Alberta First Nations

communities. Kulhawy-Wibe, S., King-Shier, K. M., Barnabe, C., Manns, B. J.,

22

Hemmelgarn, B. R., & Campbell, D. J. 1, 2018, Diabetology & Metabolic

Syndrome, Vol. 10.

20. Exploring the Experiences of Urban First Nations People Living with or Caring for

Someone with Type 2 Diabetes. Sherifali, D., Shea, N., & Brooks, S. 4, 2012,

Canadian Journal of Diabetes, Vol. 36. 10.1016/j.jcjd.2012.07.005.

21. Diabetes care and health status of First Nations individuals with type 2 diabetes in

Alberta. Oster, R. T., Virani, S., Strong, D., Shade, S., & Toth, E. L. 2009,

Canadian Family Physician, Vol. 55, pp. 386-393.

22. Exploring the experience of type 2 diabetes in urban aboriginal people. Gregory, D.,

Whalley, W., Olson, J., Bain, M., Harper, G. G., Roberts, L., & Russell, C. 1,

1999, Canadian Journal of Nursing Research, pp. 101-115.

23. Using narrative inquiry to elicit diabetes self-care experience in an Aboriginal

population. Barton, S. S. 30, 2008, Canadian Journal of Nursing Research, Vol.

40, pp. 16-36.

24. Health care experiences of Indigenous people living with type 2 diabetes in Canada.

Jacklin, K. M., Henderson, R. I., Green, M. E., Walker, L. M., Calam, B., &

Crowshoe, L. J. 3, 2017, Canadian Medical Association Journal, Vol. 189.

10.1503/cmaj.161098.

25. The diabetes experiences of Aboriginal people living in a rural Canadian community.

. Barton, S. S., Anderson, N., & Thommasen, H. V. 4, 2005, Australian Journal of

Rural Health, Vol. 13, pp. 242-246. 10.1111/j.1440-1584.2005.00709.x.

26. Living with Diabetes on Baffin Island Inuit Storytellers Share Their Experiences. Bird,

S. M., Wiles, J. L., Okalik, L., Kilabuk, J., & Egeland, G. M. 1, 2008, Canadian

Journal of Public Health, Vol. 99, pp. 17-21.

27. Foot abnormalities in Canadian Aboriginal adolescents with Type 2 diabetes.

Chuback, J., Embil, J. M., Sellers, E., Trepman, E., Cheang, M., & Dean, H. 7,

23

2007, Diabetic Medicine, Vol. 24, pp. 747-752. 10.1111/j.1464-

5491.2007.02133.x.

28. Beating Diabetes Together: A Mixed-Methods Analysis of a Feasibility Study of

Intensive Lifestyle Intervention for Youth with Type 2 Diabetes. Huynh, E., Rand,

D., Mcneill, C., Brown, S., Senechal, M., Wicklow, B., . . . Mcgavock, J. 6, 2015,

Canadian Journal of Diabetes, Vol. 39, pp. 484-490. 10.1016/j.jcjd.2015.09.093.

29. Optimizing Diabetes Literacy: Lessons from African Canadians in Calgary about

Type 2 Diabetes Diagnosis. Jane I. Ekong, Shelly Russell-Mayhew, Nancy Arthur

PhD. 2013, Canadian Journal of Diabetes, Vol. 37, pp. 231-236.

30. Self-Management, Health Service Use and Information Seeking for Diabetes Care

among Black Caribbean Immigrants in Toronto. Ilene Hyman, Enza Gucciardi,

Dianne Patychuk, Joanna Anneke Rummens, Yogendra Shakya, Dragan Kljujic,

Mehreen Bhamani, Fedaa Boqaileh. 2014, Canadian Journal of Diabetes, Vol.

38, pp. 32-37.

31. Dietary Education Tools for South Asians with Diabetes. Mian, S. I., & Brauer, P. M.

1, 2009, Canadian Journal of Dietetic Practice and Research, Vol. 70, pp. 28-35.

10.3148/70.1.2009.28.

32. Exploring diabetes management amongst immigrant Sikhs in the Greater Toronto

Area: A qualitative study. Uppal, G., Sibbald, S. L., & Melling, J. 6, 2016,

Ethnicity & Health, Vol. 21, pp. 551-563. 10.1080/13557858.2016.1143088.

33. Rethinking peer support for diabetes in Vancouvers South-Asian community: A

feasibility study. Tang, T. S., Sohal, P. S., & Garg, A. K. 8, 2015, Diabetic

Medicine, Vol. 32, pp. 1077-1084.

34. Self-monitoring of blood glucose in Black Caribbean and South Asian Canadians

with non-insulin treated Type 2 diabetes mellitus: A qualitative study of patients’

perspectives. Gucciardi, E., Fortugno, M., Senchuk, A., Beanlands, H., Mccay,

24

E., & Peel, E. E. 1, 2013, BMC Endocrine Disorders, Vol. 13. 10.1186/1472-

6823-13-46.

35. Cultural Barriers to Initiating Insulin Therapy in Chinese People With Type 2

Diabetes Living in Canada. Ho, E. Y., & James, J. 4, 2006, Canadian Journal of

Diabetes, Vol. 30, pp. 390-396. 10.1016/s1499-2671(06)04004-4.

36. The Impact of Hispanic Ethnicity on Knowledge and Behavior Among Patients With

Diabetes. Amit Bhargava, Siddharth A. Wartak, Jennifer Friderici, Michael B.

Rothberg,. 3, 2014, The Diabetes EDUCATOR, Vol. 40, pp. 336-343.

37. Ethnic differences in diabetes knowledge and education: the South Auckland

Diabetes Survey. Simmons D, Shaw L, Kenealy T, Scott D, Scragg R. 978, 1994,

N Z Med J, Vol. 107, pp. 197-200.

38. Knowledge of gestational diabetes among a multi-ethnic cohort in Australia. .

Carolan M, Steele C, Margetts H. 6, 2010, Midwifery., Vol. 26, pp. 579-88.

39. Knowledge of gestational diabetes mellitus at first consultation in a multi-ethnic

pregnant population in the Oslo region, Norway - a cross-sectional study. Borgen

I, Garnweidner-Holme LM, Jacobsen AF, Fayyad S, Cvancarova Småstuen M,

Lukasse M. 2019, Ethn Health., Vol. 16, pp. 1-14.

40. Racial and ethnic disparities in perceptions of physician style and trust. Doescher

MP, Saver BG, Franks P, Fiscella K. 10, 2000, Arch Fam Med., Vol. 9, pp. 1156-

63.

41. Colonial Hauntings: Migrant Care in a French Hospital. Kehr, J. 8, 2018, Med

Anthropol., Vol. 37, pp. 659-673.

42. Impact of social support on oral health among immigrants and ethnic minorities: A

systematic review. Dahlan R, Ghazal E, Saltaji H, Salami B, Amin M. 6, 2019,

PLoS One, Vol. 14, p. e0218678.

25

43. High perceived social support and hospital readmissions in an older multi-ethnic,

limited English proficiency, safety-net population. Chan B, Goldman LE, Sarkar

U, Guzman D, Critchfield J, Saha S, Kushel M. 1, 2019, BMC Health Serv Res,

Vol. 19, p. 334.

26

2.7. Tables and Figures

Figure 2-1 PRISMA chart showing the process of screening papers for this systematic review

All 31,648 non-duplicate citations were reviewed, and inclusion/exclusion criteria were applied by two authors together. The remaining 285 articles were reviewed independently by two authors. After reconciliation of the outcomes, 22 articles were shortlisted to be included in this systematic review.

27

Table 2-1 Demonstrating keywords crossed with “Type 2 Diabetes” AND “Social OR Cultural”

Indigenous Black East Asian South East Asian South Asian

OR Indigenous OR First Nation

OR Metis OR Inuit OR Indian

OR African OR Chinese OR Japanese OR Korean OR

Mongolian OR Taiwanese

OR Thai OR Filipino OR Vietnamese OR Cambodian OR

Singaporean OR Indonesian OR

Malaysian OR Lao OR Burmese OR

Myanmarese OR Bruneian OR

East Timorese

OR Afghani OR Bangladeshi OR Bhutanese OR

Indian OR Nepalese OR Pakistani OR

Sri Lankan OR Maldivian OR

Dhivehin”

Each column demonstrates an ethnic group of interest included in this review. The first row includes the primary keyword for each ethnic group. The second row includes the alternative keywords that were included for each group. The final keyword search was composed as “Type 2 Diabetes” AND “Social OR Cultural” AND “Primary1 OR Alternative1 OR Primary2 OR Alternative2 OR …”

28

Table 2-2 Result of quality appraisals for eligible qualitative papers Study Yes Cannot

Tell No Number of items

with scoring conflict

Quality Score [-20, 20]

Quality Score (%)

Hernandez, 1999

17 3 0 1 17 92.5%

Ho & James, 2006

15 4 1 1 14 85.0%

Mian & Brauer, 2009

13 5 2 3 11 77.5%

Uppal et al., 2016

16 4 0 0 16 90.0%

Kulhawy‑Wibe et al., 2018

14 2 4 0 10 75.0%

Gregory et al., 1999

14 6 0 0 14 85.0%

Sherifali et al., 2012

14 4 2 0 12 80.0%

Jacklin et al., 2017

18 2 0 0 18 95.0%

Bird et al., 2008 16 3 1 2 15 87.5% Gucciardi et al.,

2013 16 3 1 2 15 87.5%

Barton et al., 2005

13 6 1 1 12 80.0%

Barton, 2008

12 7 1 2 11 77.5%

Huynh et al., 2015

12 6 2 0 10 75.0%

Ekong et al., 2013

16 4 0 0 16 90.0%

CASP checklists were used to assess quality of each paper by two independent reviewers. The scoring mechanism assigned a score of +1 to every “Yes”, a score of 0 to every “Can’t Tell”, and a score of -1 to every “No”. Number of items from the checklist that received a different score from each reviewer are indicated. Total scores from both reviewers were added up to calculate the final quality score. The quality score was translated into a percentage by adding 20 to the existing score and dividing it by 40.

29

Table 2-3 Result of quality appraisals for eligible cohort papers Study Yes Can’t Tell No Number of

questions with scoring conflict


Quality Score (%)

Daniel & Messer, 2002

22 3 1 2 21 90.4%

Tang et al., 2014

21 1 4 1 17 82.7%

Rose et al., 2008

24 0 2 0 22 92.3%

Huynh et al., 2015

16 6 4 0 12 73.1%

Hyman et al., 2014

18 6 2 0 16 80.8%


30

Table 2-4 Result of quality appraisals for eligible cross-sectional papers Study Yes Cannot

Tell No Number of

questions with scoring conflict


Quality Score (%)

Allan et al., 2008

18 0 4 0 14 81.8%

Chuback et al., 2007

20 0 2 0 18 90.1%

Oster et al., 2009

17 1 4 1 13 79.5%

Daniel et al., 2001

16 0 6 0 10 72.7%


31

Table 2-5 Summary of characteristics of eligible papers Characteristics Number of Papers (%), N = 22 Dates

1999 2 (9.1%) 2000 - 2005 3 (13.6%) 2006 – 2010 8 (36.4%) 2011 – 2015 6 (27.3%) 2016 - 2018 3 (13.6%)

Study Design Qualitative 13 (59.1%)

Quantitative 8 (36.4%) Mixed Methods 1 (4.5%)

Target Population Indigenous 15 (68.2%)

Black 2 (9.1) East Asian 1 (4.5%)

South Asian 4 (18.2%) Southeast Asian 0 (0.0%)

Setting (overlapping categories) Urban 14 Rural 6

Reserve 9 Province (overlapping categories)

Alberta 4 British Columbia 6

Manitoba 5 Nunavut 1 Ontario 9

Social Factors (overlapping categories) Financial Constraints 4

Time Constraints 0 Resource Constraints 14

Geographical Constraints 6 Cultural Factors (overlapping categories)

Agency and Opportunity 4 Traditions and Conventions 5

Health and Illness 8 Self and Other 10

Change and Transition 10 Indigenous includes Aboriginal, First Nation, Metis, Inuit, and Indian; East Asian includes Chinese, Japanese, Korean, Mongolian, and Taiwanese; South East Asian includes Thai, Filipino, Vietnamese, Cambodian, Singaporean, Indonesian, Malaysian, Lao, Burmese, Myanmarese, Bruneian, and East Timorese; South Asian includes Afghani, Bangladeshi, Bhutanese, Indian, Nepalese, Pakistani, Sri Lankan, Maldivian, and Dhivehin.

32

Table 2-6 Detailed characteristics of eligible papers Author, Year

Purpose Ethnic Group Setting Study Design Theoretical Background

Number of Participants

Sampling Data Collection

Huynh et al., 2015

To assess the feasibility and lived experiences of an intensive group-based lifestyle intervention for

youth with type 2 diabetes

Indigenous Urban Mixed methods Thematic analysis in conjunction with paired

samples t-test

12 (quantitative), 5 (qualitative)

Sampling strategy not reported for quantitative, convenience sampling for qualitative

Clinical measures, blood tests, one-on-one

or paired interview

Kulhawy‑Wibe et al.,

2018

To gain insight into the financial &

structural barriers to self-management

experienced by First Nation individuals

with diabetes

Indigenous Not reported

Qualitative Inductive thematic analysis

5 Purposive sampling

Semi-structured telephone interviews

Barton et al., 2005

To explore experiences of

Nuxalk people living with the challenges of diabetes health

services in culturally specific ways

Indigenous Rural Qualitative Thematic analysis


Interviews in a hospital

family room

Barton, 2008

To examine an Indigenous person’s experience of living

with diabetes

Indigenous Rural Qualitative Narrative inquiry


5 years of scholarly and

personal exploration

33

Author, Year




Gregory et al., 1999

To determine the experience of

Indigenous people living with type 2

diabetes

Indigenous Urban Qualitative Naturalistic approach; person-centered

interviewing


Semi-structured

conversational interviews

Bird et al., 2008

To explore the experiences of food choice, perceptions

of diabetes, and health management among those with diabetes in a small Arctic community

Indigenous Rural Qualitative Narrative inquiry based

on hermeneutic

phenomenological philosophy,

holistic thematic analysis


In-depth interviews,

field observations, and informal interviews

Hernandez, 1999

To determine how First Nations clients

with diabetes perceive and live

with their diabetes and to determine

whether the theory of integration is

applicable to First Nations people

Indigenous Reserve Qualitative Grounded theory using the emergent fit model used

for inquiry, theory of

integration used as the framework

10 Theoretical sampling

Interviews on two separate occasions,

at the location of their choice;

questions were open-

ended

34

Author, Year




Sherifali et al., 2012

To understand the lived experience of First Nation adults living with or caring for someone with type 2 diabetes in an urban setting

Indigenous Urban Qualitative Descriptive approach, naturalistic

inquiry, thematic

analysis, no a priori

commitment to any theoretical

viewpoint

Mean attendance of 24 participants

per sharing circle

Convenience sampling

Four sequential

sharing circles (focus groups), over four weeks

Jacklin et al., 2017

To examine opportunities that

inspire and empower patients in their care, journey, as well as moments

that disarm and disengage

indigenous patients from formal health

care systems

Indigenous Reserve, rural, urban

Qualitative Phenomenological thematic

analysis model

32 A combination of purposive, convenience, and snowball

sampling

Sequential focus groups

and interviews:

Focus groups occurred over 5 sessions at

4 sites; 3 participants

were interviewed at

a 5th site Oster et al.,

2009 To describe the state of diabetes

care among Alberta First Nations

individuals with diabetes

living on reserves

Indigenous Reserve Quantitative Descriptive statistics

743 Convenience and snowball

sampling

Clinical measures,

clinical history, surveys

35

Author, Year




Daniel et al., 2001

To test the psychosocial correlates of

dyslipidemia in Indigenous persons with and at risk for

type 2 diabetes

Indigenous Reserve Quantitative Linear regression

model

198 Not provided Blood samples, clinical

measures, and

psychosocial standardized

tests Daniel & Messer,

2002

To examine the capacity of the

health belief model in longitudinal prediction of

glycemic control while allowing for

the potential influence of

behavior in a sample of Indigenous

Canadians from a population at high

risk for diabetes and its complications

Indigenous Reserve Quantitative Linear regression models for each belief

34 Not provided Clinical measures,

blood samples,

Pima Indian physical

activity scale, diabetes

knowledge test, self-

reported logs of foods and drinks, health belief model

diabetes scale

36

Author, Year




Rose et al., 2008

To evaluate treatment outcomes

in patients with diabetic foot ulcers

in a multidisciplinary, tertiary care clinic, and to determine

risk factors predictive of a poor

clinical outcome


Quantitative Chi-square, odds ratio, Cox

proportional hazard model

325 Included all those who

attended the clinic in a two-year timeframe

Medical records

Chuback et al., 2007

To determine the profile of foot

abnormalities in Canadian

Indigenous adolescents with

Type 2 diabetes and the risk factors associated with

these abnormalities


Quantitative Chi-square analysis and

two-tailed student’s t-test

110 Included all adolescents

(12– 17 years) of self-declared Indigenous

ancestry who were patients of

the Pediatric Type 2

Diabetes Clinic at the

Children’s Hospital

Medical record review and interview,

physical examination,

laboratory studies

37

Author, Year




Allan et al., 2008

To compare youth and parent-proxy

perceptions of youth quality of life

Indigenous Reserve, urban

Quantitative Compared the scale scores

between child self-report and parent proxy-report within and between the generic

and diabetes tools using paired t-

tests

28 youth and parents

All youth who attended the clinic for the

first time after being

diagnosed with type 2 diabetes

Blood sample,

questionnaire, PedsQL

standardized survey

Ho & James, 2006

To determine some of the cultural

barriers to initiating insulin therapy

among Chinese individuals with type 2 diabetes living in

Canada

East Asian Urban Qualitative framework analysis for emergent concepts

and themes


sampling

intensive semi-

structured interviews

Mian & Brauer, 2009

To examine perceived needs

and preferences for diet counselling

resources based on the Canadian

Diabetes Association meal planning guide

South Asian Urban Qualitative Discussions were

summarized and compared across groups


sampling

Focus group discussions

38

Author, Year




Gucciardi et al., 2013

To examine the views and current practice of SMBG

among Black Caribbean and

South Asian individuals with non-insulin treated type 2 diabetes mellitus

South Asian Urban Qualitative Thematic networks analysis

12 Purposive and snowball sampling

Semi-structured interviews

guided by the health belief

model

Uppal et al., 2016

To describe the ethnocultural

influences associated with

managing diabetes in a small sample of

older Sikh immigrants in

Toronto

South Asian Urban Qualitative Constant comparative methods – Themes emerged

9 Purposive and snowball sampling

Semi-structured interviews

Tang et al., 2014

To examine the feasibility and

potential health impact of a diabetes

self-management education and

support intervention involving peer

support on glycemic control and diabetes

distress

South Asian Urban Quantitative Attendance rate,

correlations, t-test, content

analysis

41 Not reported Clinical measures,

blood samples, diabetes distress scale,

surveys, post-intervention feedback session

39

Author, Year




Ekong et al., 2013

To investigate how African Canadians experience type 2

diabetes

Black Urban Qualitative hermeneutic phenomenolog

y


1 to 2-hour interviews

Hyman et al., 2014

To investigate how African Canadians experience type 2

diabetes

Black Urban Quantitative Linear regression Bivariate

analyses (t-test, chi square

test, Fisher’s exact test)

102 Convenient sampling

Questionnaire

Indigenous includes Aboriginal, First Nation, Metis, Inuit, and Indian; East Asian includes Chinese, Japanese, Korean, Mongolian, and Taiwanese; South East Asian includes Thai, Filipino, Vietnamese, Cambodian, Singaporean, Indonesian, Malaysian, Lao, Burmese, Myanmarese, Bruneian, and East Timorese; South Asian includes Afghani, Bangladeshi, Bhutanese, Indian, Nepalese, Pakistani, Sri Lankan, Maldivian, and Dhivehin.

40

2.8. Supplementary Material

Supplementary I: Table 2-7 Areas of content covered in eligible papers categorized by ethnicity

Indigenous (N = 15)

Black (N = 2)

East Asian (N = 1)

South Asian (N = 4)

Southeast Asian (N = 0)

Total (N = 22)

Social Factors Financial Constraints 2 0 1 1 0 4

Time Constraints 0 0 0 0 0 0 Resource Constraints 8 2 1 3 0 14

Geographical Constraints

5 0 0 1 0 6

Total unique counts 11 0 1 3 0 15 Cultural Factors

Agency and Opportunity

2 0 0 2 0 4

Traditions and Conventions

2 0 0 3 0 5

Health and Illness 6 1 1 0 0 8 Self and Other 6 0 1 3 0 10

Change and Transition 6 0 1 3 0 10 Total unique counts 13 0 1 5 0 19

Indigenous includes Aboriginal, First Nation, Metis, Inuit, and Indian; East Asian includes Chinese, Japanese, Korean, Mongolian, and Taiwanese; South East Asian includes Thai, Filipino, Vietnamese, Cambodian, Singaporean, Indonesian, Malaysian, Lao, Burmese, Myanmarese, Bruneian, and East Timorese; South Asian includes Afghani, Bangladeshi, Bhutanese, Indian, Nepalese, Pakistani, Sri Lankan, Maldivian, and Dhivehin.

41

Supplementary II: Table 2-8 Data extracted from each eligible paper Author, Year

Huynh et al., 2015 Key themes identified The intensive lifestyle intervention did not elicit any changes in any of the

anthropometric or cardiometabolic risk factors Living with diabetes: (1) The negative emotions (Isolating, Feelings of guilt,

hopelessness, and defeat); (2) Difficulties in managing the illness (participants felt that diet was something that they were individually

responsible for managing, being in a group as being a significant motivator for participating in physical activity); (3) Positive experiences (support from other participants and staff as significant motivators for them to attend and participate, participating in the intervention provided a sense of hope); (4)

Relationships (The program helped participants develop and maintain close friendships, These relations were important for their holistic health, Some

described a feeling of intimacy as a result of participating) Unique aspects of the program that differed from traditional models of behavior change: (1) Timing and availability of programming (Benefits in

continuing programming into the summer months); (2) Inclusive environment (dislikes of the competitive nature of gym classes and feelings of judgement

when participating in physical activity in school)

Author’s interpretations Intensive lifestyle therapy alone may not be sufficient for risk reduction in youth.

Perceptions of guilt and lack of control are consistent challenges facing youth and their parents.

Social and familial support is considered a critical determinant. Youth and parents felt that activities that empowered youth (shopping tours

and cooking classes) were beneficial for youth. Non-competitive games that were equitable were critical aspects of

participation. Group-based lifestyle interventions delivered during the after-school period are feasible and are well received by some youth living with type 2 diabetes

in an urban setting, however, changes in cardiometabolic risk factors are variable.

Recommendations The need for novel approaches to behavior modification for youth living with type 2 diabetes

It is possible that different models of behavior change perhaps culturally tailored are more appropriate for indigenous youth living in the inner city of an

urban center Kulhawy‑Wibe et al., 2018

Key themes identified Geography: (1) Physical barrier to accessing care services; (2) Transportation to access specialist and allied health care is a challenge

(Transportation only offered for seeing a physician, Transportation related expenses are significant barriers); (3) Difficulties in diet adherence

(Significant difficulties accessing appropriate healthy foods, Easier to stock up processed food)

Finances and Health Insurance: (1) Obtaining diabetes supplies such as blood glucose testing strips, was financially difficult for most participants despite partial public funding through NIHB; (2) All reported a prohibitive financial barrier to accessing at least one of dental, vision, or foot care

related to NIHB policies and limited coverage (3) Significant financial cost associated with healthy food

42

Author, Year Lack of Diabetes Education: (1) Several participants were not aware of or

were unsatisfied with diabetes education offered in the community; (2) Some participants turned to the internet; (3) Many reported diabetes as completely

unfamiliar; (4) Knowledge gaps limited patients’ ability to manage their condition; (5) Knowledge gaps created stress that weighted heavily on the

minds of participants; (6) Some voiced a degree of fatalism that poor outcomes were inevitable; (7) Many had a hard time admitting or accepting

that they were diabetic or felt embarrassed; (8) There was an element of guilt and shame

Author’s interpretations Barriers to optimal care are complex and inextricably intertwined with culture, values, history, and geography.

Finances were a major concern in one way or another. Geographic isolation is a significant contributor when coupled with low

socioeconomic status. Quality diabetes education was lacking which hinders diabetes

management and promotes disease stigma. Generations of mistreatment and multigenerational trauma contribute

significantly to difficulties. Ongoing racism and exclusion lead to considerable mistrust of healthcare

providers which limits the quality of care that can be provided. Recommendations Care providers should practice cultural humility with openness to

indigenous ways of understanding health that incorporate patient centered interventions

Acknowledging the failed historical past of the healthcare system’s interactions with FN communities could be incorporated into educational

programs to breakdown the legacy of mistrust Barton et al., 2005

Key themes identified Western and traditional medicines: (1) How medications control diabetes is less understood; (2) Weekly pill box for medications beneficial; (3) Traditional

foods and medicinal plants used to manage diabetes; (4) Ceremonial practices used to share experiences

Diet, exercise and weight: (1) Smaller food portion sizes, less salt and sugar consumed; (2) Felt the need to ‘cheat’ on prescribed diet; (3)

Exercising viewed as most challenging Difficult to exercise repeatedly; (4) Weight loss successes, frustrating

fluctuations experienced Cultural communication: (1) others with diabetes sought for their wisdom;

(2) Need for professionals to understand Indigenous culture emphasized; (3) Desire for diabetic clinic and workshops in community expressed (4)

Inclusion of Indigenous perspectives into programs desired Choice and responsibility: (1) Diabetes is influenced by personal choice; (2)

Following professional advice is important; (3) Responsibility for own decisions acknowledged

Living day by day: (1) A sense of wellbeing promoted by living day by day; (2) Some life cycles may need to be broken; (3) Family and community

connections enhanced Author’s interpretations Not provided

Recommendations Consultative meetings with community members The use of a cultural awareness program for health professionals

The involvement of Indigenous people in the development of their own diet, exercise, and prevention strategies

43

Author, Year Barton, 2008

Key themes identified Cultural differentiations and diabetes experiences: How an Indigenous person living with diabetes experiences the world: (1) Indigenous

experiences

social and cultural aspects of living with type 2 diabetes...

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