The Experience of Living with Diabetes and Mental Illness for

Low Income Canadians

Beryl Pilkington, RN, PhD School of Nursing

Faculty of Health, York University

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*Dennis Raphael (PI), *Serban Dinca-Panaitescu School of Health Policy & Management *Mihaela Dinca-Panaitescu York Institute for Health Research *Beryl Pilkington, *Isolde Daiski: School of Nursing Toba Bryant: Sociology, University of Toronto Elizabeth Lines, Research Assistant

*York University Funder: Social Sciences & Humanities Council of Canada

Research Team

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Presentation Objectives

To increase understanding of how social determinants affect development and self-management of type 2 diabetes mellitus (T2DM)

To explore the intersection of poverty, mental illness and T2DM

To identify health service needs of persons with T2DM & mental illness

To identify policy and practice implications concerning T2DM

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The Problem Poverty is a significant risk factor for poor

physical and mental health (CMHA, 2007)

T2DM is more prevalent in low-income populations and those with mental illness; also, these populations have higher rates of complications and premature mortality.

Why? “Social injustice is killing people on a grand

scale” (World Health Organisation, 2008)

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Material Deprivation Adverse childhood circumstances are good

predictors of type 2 diabetes during adulthood (Brunner & Marmot, 2006).

Intrauterine-growth retarded babies are most likely to be born of lower income mothers and are at higher risk of developing type 2 diabetes, regardless of later life circumstances (Barker et al., 2001).

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Psychosocial Stress Stress produces cortisol Cortisol levels are higher among deprived

populations Cortisol increases levels of blood glucose and is

an antagonist of insulin “The cluster of risk factors may be the product of altered

activity of the HPA (hypothalamic-pituitary-adrenal) axis in response to long-term exposure to adverse psychosocial circumstances.” (Brunner & Marmot, 2006)

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3 Mechanisms Linked with Type 2 Diabetes

1. Material deprivation 2. Psychological Stress

3. Adoption of health-threatening coping mechanisms

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Mental Illness and T2DM

Mental illness (depression, anxiety, schizophrenia) is associated with T2DM (see Bibliography) consequence, or risk factor??

T2DM and depression both have a neuroendocrine basis (Champaneri, Wand, Malhotra, Casagrande, & Golden,

2010). Mental illness is associated with higher

morbidity and mortality from T2DM (Rustad,

Musselman, & Nemerof, 2011). 9

What Explains the Association of T2DM & Mental Illness?

Poverty “The relationship between poverty and mental illness is both straightforward and complex in its pervasive reach” (CMHA, 2007).

Poverty is a risk factor for poor health (recall the 3 mechanisms)

“People with mental illness often live in chronic poverty” (CMHA, 2007).

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Methodology

Part 1: Analysis of large data sets (Canadian Community

Health Survey; National Population Health Survey)

Part 2: 60 in-depth interviews with individuals with T2DM,

and 3 focus groups with service providers. Thematic and content analysis

Critical perspective, social determinants a sensitizing concept

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Part 2a) Perspective of Persons with Diabetes

Purposive sampling of clients from 4 different community health centres in Toronto Inclusion criteria: type 2 diabetes; low income;

diversity

Semi-structured interviews, audio-taped and transcribed verbatim

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Description of Participants Gender: 34 women, 26 men (total = 60) Age: mean = 57 years (range, 30 – 76 years) Marital status: 36 single, widowed, divorced, or separated;

24 married or common-law Source of Income: 28 on ODSP; 17 seniors on a pension; 6

on OW; 6 working or living on spouse’s income Income: all participants < $35,000/year

38 had income <$15,000/year Racial and ethnic diversity: 43 born outside of Canada;

only 5 self-identified as ‘Canadian’ Medical status: range from newly diagnosed to dx > 10 years

ago Mental Illness: 6 self-identified with a mental illness:

schizophrenia (2); addiction &/or depression (4) 13

Findings

Overarching theme: Resilient struggle for survival amid hardship Sub-themes:

Balancing competing priorities Making the best of it Applying knowledge and know-how in diabetes self-

management

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Resilient Struggle for Survival amidst Hardship

The daily struggle to survive in the face of multiple challenges of trying to manage their diabetes while living on a low income (food insecurity, employment insecurity, inadequate housing, lack of access to affordable transportation, etc.)

For newcomers to Canada, the struggle was compounded by cultural adjustment issues and language barrier

In addition, many had concurrent medical conditions, including physical disabilities and/or mental health challenges.

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Balancing Competing Priorities

Refers to the constant juggling act required to survive on a limited income; for instance, whether to buy good quality food, or diabetes medication, or orthopedic shoes, or pay the rent

Such forced choices represent dilemmas, where any choice would have undesirable consequences when other basic needs or priorities cannot be met.

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Making the Best of It

Participants mustered support and resources from various sources, including friends and family, health services, and community and social services, in order to make the best of their difficult circumstances.

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Applying Knowledge and Know-How in Diabetes Self-Management

Participants described making use of medical as well as experiential knowledge in order to manage their diabetes as best they could, within the difficult circumstances of their lives.

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Part 2b) Insights from Healthcare Workers

Theme 1: Compounding, negative effects of social factors on the health of people with diabetes:

insecure housing, resource-poor neighborhoods, unemployment/insecure employment, food insecurity, disability, and unequal access to healthcare

gender, culture, and language issues

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Quotations from Healthcare Workers…

“Their lives are very chaotic…” “Their closest grocery store in the community

just closed…” “They often don’t really want to go out on the

street or walk….” “It’s a very complicated and exhausting life…” “Many don’t have access to health services...”

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Theme 2: The Need for Responsive Supports from Multiple Levels

To help people better manage their diabetes or prevent it in the first place, responsive supports are needed at the point of care, and at the healthcare system and policy levels.

a) Point of care: Programs and services to increase self-care

capacity Client centred approach

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b) Healthcare System Level

The need for more integrated, coordinated, comprehensive healthcare that is responsive to the needs of communities Integrate primary health care, public health, and

social services

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c) Public Policy Level

Policy changes resulting in cuts to health and social spending have worked against the poor.

To address diabetes epidemic, policy should address the SDOH: “People need the basics: safe, secure housing, proper income, access to postsecondary education…so that they get a job that pays enough to sustain them.”

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Public Policy (cont’d)

Health policy: coverage of extended health benefits and

medications for the working poor; ensuring access to healthcare for those lacking a

health card or physician referral preserving the special diet allowance more emphasis on health promotion and diabetes

prevention

Environmental and urban planning policies

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Theme 3: Barriers to Change

Professional Limited time to engage in advocacy Lack of understanding of the social issues around

diabetes, on the part of those who ‘set the agenda’

Political lack of incentive for politicians to address long term

strategies

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Societal Market-driven (neo-liberal) economic model Lack of public awareness of, and disengagement

from, issues of poverty, disability and mental illness due to negative attitudes and stigma

Barriers to Change (cont)

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Discussion & Implications Intersectionality perspective

health and illness are shaped by intersecting social categories and “power dynamics” that lead to social inequality and health inequities (Hankivsky & Christoffersen, 2008)

Living in poverty may produce T2DM (and mental illness); moreover, it complicates its management, once present (as does mental illness).

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Discussion & Implications (cont.)

“Buffering effect” of good primary health care Focus on whole person in social context

Call for advocacy on behalf of vulnerable populations (Falk-Rafael, 2005)

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Health Policy Recommendations Increase benefit levels and minimum wages to

raise individuals above the poverty line. Provincial and federal governments must re-

enter the housing sector, develop a national housing strategy, and invest more in housing.

Develop a strategy to reduce income insecurity.

Implement public policies that promote redistribution of income and wealth.

Add universal pharmacare to medicare 29

Implications for Education and Practice

Inclusion of socio-political curriculum in health professionals’ education

Poverty as a clinical risk factor (Bloch et al., 2008) Person centred care: collaborate with clients to

meet their identified needs & priorities Multidisciplinary team approaches, including

coalition building with other health and social programs

Community development approaches to facilitate empowerment for health promotion and disease prevention.

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Conclusions Findings underscore the importance of income among a

web of factors (including mental illness) in determining the risk of developing T2DM and ability to self-manage it, once acquired. Health professionals must advocate for poverty reduction

In addition to person-centred approaches, comprehensive, integrative strategies that address socioeconomic issues are needed for diabetes prevention & management.

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Conclusions (cont’d) Optimal management will not only alleviate unnecessary

suffering and improve quality of life, but will also save the healthcare system enormous expenses in the future arising from preventable, devastating complications of this chronic disease.

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Published Articles Raphael, D., Daiski, Pilkington, B., Bryant, T., Dinca-Panaitescu, S, and Dinca-

Panaitescu, M. (2011). A toxic combination of poor social policies and programmes, unfair economic arrangements, and bad politics: The experiences of poor Canadians with Type 2 Diabetes. Critical Public Health, 22, (2), 127–145.

Dinca-Panaitescua, M., Dinca-Panaitescu, S., Raphael, D., Bryant, T., Daiski, I. and Pilkington, B. (2012). The dynamics of the relationship between diabetes incidence and low income: Longitudinal results from Canada's National Population Health Survey. Maturitas, 72, (3), 229-235.

Dinca-Panaitescua, S., Dinca-Panaitescu, M., Bryant, T., Daiski, I. Pilkington, B. and Raphael, D. (2011). Diabetes prevalence and income: Results of the Canadian Community Health Survey. Health Policy 99, 116–123.

Pilkington, F.B., Daiski, I., Lines, E., Bryant, T., Raphael, D., Dinca-Panaitescu, M., and Dinca-Panaitescu, S. (2011). Type 2 diabetes in vulnerable populations: Community healthcare providers’ perspectives of health service needs and policy implications. Canadian Journal of Diabetes, 35 (5), 503-511.

Pilkington, F. B., Daiski, I., Bryant, T., Dinca-Panaitescu, M., Dinca-Panaitescu, S. and Raphael. D. (2010). The experience of living with diabetes for low income Canadians. Canadian Journal of Diabetes, 34 (2), 119-126. 33

References Barker, D., Forsen, T., Uutela A., Osmond C., &

Eriksson, J. (2001). Size at birth and resilience to effects of poor living conditions in adult life: Longitudinal study. BMJ - Clinical Research, 323 (7324), 1273-1276.

Bloch, G.,Etches, V., Gardner, C., et al. (2008). Identifying poverty in your practice and community. Ont Med Rev, 75, 33-43.

Brunner, E., & Marmot, M. (2006). Social organization, stress, and health. In: M. Marmot & R. G. Wilkinson (Eds). Social determinants of health (2nd ed.). Oxford: Oxford University Press.

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Canadian Mental Health Association, Ontario Division. (Nov. 2007). Poverty and mental illness. Ontario: Author. Available: http://ontario.cmha.ca/public_policy/poverty-and-mental-illness/#.Uc-KxJz898F

Champaneri, S., Wand, G. S., Malhotra, S. S., Casagrande, S. S., Golden, S. H. (2010). Biological basis of depression in adults with diabetes. Current Diabetes Reports, 10, 396–405. doi: 10.1007/s11892-010-0148-9.

Hankivsky, O. & Christoffersen, A. (2008). Intersectionality and the determinants of health: A Canadian perspective. Critical Public Health, 18(3), 271-283.

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World Health Organization. (2008). Closing the gap in a generation: Health equity through action on the social determinants of health. Geneva: World Health Organization.

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Diabetes & Mental Illness Bibliography

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Champaneri, S., Wand, G.S., Malhotra, S.S., Casagrande, S.S., Golden, S.H. (2010). Biological basis of depression in adults with diabetes. Current Diabetes Reports, 10, 396–405. doi: 10.1007/s11892-010-0148-9.

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Chida. Y., & Hamer, M. (2008). An association of adverse psychosocial factors with diabetes mellitus: a meta-analytic review of longitudinal cohort studies. Diabetologia, 51 (12), 2168–2178. doi: 10.1007/s00125-008-1154-1.

Donald, M., Dower, J., Coll, J.R., Baker, P., Mukandi, B., Doi, S.A.R. (2013). Mental health issues decrease diabetes-specific quality of life independent of glycaemic control and complications: Findings from Australia’s living with diabetes cohort study. Health and Quality of Life Outcomes, 11 (1), 170. doi:10.1186/1477-7525-11-170.

Egede, L.E., & Ellis, C. (2010). Diabetes and depression: Global perspectives. Diabetes Research and Clinical Practice, 87, 302–312. doi: 10.1016/j.diabres.2010.01.024

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Ludman, E.J., Katon, W., Russo, J., Von Korff, M., Simon, G., M.D., Ciechanowski, P. et al. (2004). General Hospital Psychiatry, 26 (6), 430 – 436. doi: 10.1016/j.genhosppsych.2004.08.010.

Mai, Q., Holman, C.D.J., Sanfilippo, F.M., Emery, J.D., Preen, D.B. (2011). Mental illness related disparities in diabetes prevalence, quality of care and outcomes: a population-based longitudinal study. BioMed Central Medicine, 9, 118. doi:10.1186/1741-7015-9-118.

Morris, T., Moore, M., Morris, F. J. (2011). Stress and chronic illness: The case of diabetes. Journal of Adult Development, 18 (2), 70–80. doi: 10.1007/s10804-010-9118-3.

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Peyrot, M., Rubin, R.R., Lauritzen, T., Snoek, F.J., Matthews, D.R., Skovlund, S.E. (2005). Psychosocial problems and barriers to improved diabetes management: results of the cross-national diabetes attitudes, wishes and needs (DAWN) study. Diabetic Medicine, 22 (10), 1379–1385. doi: 10.1111/j.1464-5491.2005.01644.x.

Rane, K., Wajngot, A., Wandell, P.A., Gafvels, C. (2011). Psychosocial problems in patients with newly diagnosed diabetes: Number and characteristics. Diabetes Research and Clinical Practice, 93 (3), 371-378. Doi: 10.1016/j.diabres.2011.05.009.

Rustad, J.K., Musselman, D.L., Nemerof, C.B. (2011). The relationship of depression and diabetes: Pathophysiological and treatment implications. Psychoneuroendocrinology, 36, 1276- 1286. doi:10.1016/j.psyneuen.2011.03.005.

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Warren, B.H., Crews, C.K., Schulte, M.M. (2001). Managing patients with diabetes mellitus and mental health problems. Administrative and clinical challenges. Disease Management and Health Outcomes, 9 (3), 123-130. doi: 10.2165/00115677-200109030-00001.

Williams, E.D., Magliano, D.J., Tapp, R.J., Oldenburg, B.F., Shaw, J.E. (2013). Psychosocial stress predicts abnormal glucose metabolism: The Australian Diabetes, Obesity and Lifestyle (AusDiab) Study. Annals of Behavioural Medicine, 46 (1), 62–72. doi: 10.1007/s12160-013-9473-y.

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