Exploring the Lived Experience of Diabetes Through an Intersectional Lens: A Qualitative Study of Adults With Type 1 and Type 2 Diabetes

Jones, Zoey; Akerman, Jennifer; Bajurny, Virtue; Gaudreau, André; Rochon, Paula A.; Mason, Robin

doi:10.1016/j.jcjd.2022.06.002

Cited by 8 publications

(11 citation statements)

References 29 publications

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“…MAXQDA (V.22.1.1) was used to conduct thematic analysis across transcripts as follows: a qualitative codebook with a priori deductive codes was developed using the interview guide and preliminary themes based on literature review,14–29 and inductive codes were developed during transcript review and analyst discussion. Each transcript was independently coded in its original language by three coders who were fluent in the language in which the interview was conducted.…”

Section: Methodsmentioning

confidence: 99%

“…Prior research has found that social determinants of health, such as financial factors, access to healthcare and psychosocial support have substantial impacts on patients’ experience with and outcomes of diabetes care14–29 and that these experiences can differ across other, intersecting factors,19 such as race, ethnicity, language and rurality. However, few of these prior studies were conducted during or after the pandemic’s onset, with most recent studies examining the experiences of patients living outside the USA during that time.…”

Section: Introductionmentioning

confidence: 99%

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Diabetes care in the pandemic era in the Midwestern USA: a semi-structured interview study of the patient perspective

Gonzalez Bravo,

Sabree,

Dukes

et al. 2024

BMJ Open

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ObjectivesTo understand patients’ experiences with diabetes care during the COVID-19 pandemic, with an emphasis on rural, medically underserved, and/or minoritised racial and ethnic groups in the Midwestern USA.DesignCommunity-engaged, semi-structured interviews were conducted by medical student researchers trained in qualitative interviewing. Transcripts were prepared and coded in the language in which the interview was conducted (English or Spanish). Thematic analysis was conducted, and data saturation was achieved.SettingThe study was conducted in communities in Eastern and Western Iowa.ParticipantsAdults with diabetes (n=20) who were fluent in conversational English or Spanish were interviewed. One-third of participants were residents of areas designated as federal primary healthcare professional shortage areas and/or medically underserved areas, and more than half were recruited from medical clinics that offer care at no cost.ResultsThemes across both English and Spanish transcripts included: (1) perspectives of diabetes, care providers and care management; (2) challenges and barriers affecting diabetes care; and (3) participant feedback and recommendations. Participants reported major constraints related to provider availability, costs of care, access to nutrition counselling and mental health concerns associated with diabetes care during the pandemic. Participants also reported a lack of shared decision-making regarding some aspects of care, including amputation. Finally, participants recognised systems-level challenges that affected both patients and providers and expressed a preference for proactive collaboration with healthcare teams.ConclusionsThese findings support enhanced engagement of rural, medically underserved and minoritised groups as stakeholders in diabetes care, diabetes research and diabetes provider education.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Diabetes care in the pandemic era in the Midwestern USA: a semi-structured interview study of the patient perspective

Gonzalez Bravo,

Sabree,

Dukes

et al. 2024

BMJ Open

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“…When appraising the significance of treatment outcomes, it is also important to consider how the individual contexts within which people belonging to equity-deserving groups experience T2DM will mediate the value they ascribe to them. In their study exploring the experiences of adults with diabetes through an intersectional lens, Jones et al 79 found that disclosure of a diabetes diagnosis could be especially anxiety-provoking and, in some cases, detrimental to people living with multiple marginalization. Treatment outcomes potentially outing people as living with T2DM may have significant implications in these contexts.…”

Section: The Significance Of Treatment Outcomes As Context-dependentmentioning

confidence: 99%

“…In Jones et al's study, for example, 1 woman experiencing compound workplace discrimination due to her race, language, and gender described feeling the need to delay responding to hypoglycemia while at work. 79 In the context of the compound discrimination she experienced, she feared that she was at an especially high risk of losing her job if others perceived her as inefficient or underperforming. 79 Relatedly, since the value people ascribe to treatment outcomes is influenced by individually experienced contexts, not all members of equity-deserving groups will attribute the same significance to outcomes like a reduced risk of complications.…”

Section: The Significance Of Treatment Outcomes As Context-dependentmentioning

confidence: 99%

“…79 In the context of the compound discrimination she experienced, she feared that she was at an especially high risk of losing her job if others perceived her as inefficient or underperforming. 79 Relatedly, since the value people ascribe to treatment outcomes is influenced by individually experienced contexts, not all members of equity-deserving groups will attribute the same significance to outcomes like a reduced risk of complications. In their study on adolescents living with T2DM in the UK, for example, Turner et al 46 found that some were not surprised by their T2DM diagnosis nor particularly concerned about potential future complications, especially if their parent had the condition.…”

Section: The Significance Of Treatment Outcomes As Context-dependentmentioning

confidence: 99%

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Living With Type 2 Diabetes

Bentz¹,

Hancock-Howard²,

Press³

et al. 2023

cjht

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We conducted a custom technology review to narratively describe treatment outcomes and considerations important to people living with type 2 diabetes mellitus (T2DM) in Canada, as detailed in patient input provided to CADTH in the past. Patient groups submitted the input described in this review to inform CADTH Reimbursement Reviews, which advise reimbursement decisions made by public drug programs in Canada. CADTH staff produced this report through close engagement with representatives from patient groups that had contributed these inputs, including Diabetes Canada, Type 2 Diabetes Experience Exchange (T2DXX), and Patient Commando. This learning project provided an opportunity for CADTH to explore patient input in a new but rigorous way outside of the time constraints of Reimbursement Reviews for specific drugs. In past patient input, people living with T2DM emphasized that the condition demands intensive, perpetual self-management and has a profound and usually negative impact on their physical, psychosocial, and economic well-being. People living with T2DM want a cure for the condition. In the meantime, to improve their quality of life, they desire treatments that reduce the risk of hyperglycemia and its short- and long-term complications; facilitate weight loss; and improve their mental state, focus, and energy levels. They also desire treatments that can lessen the burden of medication administration, specifically by decreasing polypharmacy and dose frequency and allowing for easy storage, preparation, and administration. They would like medications to reduce the need for blood glucose checks, injections, and insulin, and they hope that new treatments can promote a return to normalcy by providing the freedom to eat and do what they want, when they want. In addition to these desired treatment outcomes, people living with T2DM want medications that cause few or no adverse effects, especially hypoglycemia, weight gain, and gastrointestinal and urogenital side effects. All patient input emphasized the need to increase access to and affordability of T2DM treatments in Canada. When discussing the contexts in which people living with T2DM access and use medications, patient groups also stressed the importance of respect and effective communication in therapeutic and interprofessional relationships; the need to provide and enhance knowledge to support informed decisions about and safe use of medications; and the importance of offering people with T2DM individualized treatment plans and a variety of choices. Patient groups reported limited demographic information on the people they surveyed and interviewed to inform their inputs. Inputs providing demographic information, however, showed that the voices of those belonging to equity-deserving groups in Canada were missing or underrepresented. The treatment outcomes and considerations emphasized in past patient input may differ from those important to members of these groups or may carry additional meaning or significance to them. Future avenues of inquiry and active engagement could focus on gaining insight into the perspectives and preferences of equity-deserving groups that include but are not limited to Black people, Indigenous people, and other people of colour; people living in poverty or with low income; people living in rural and remote communities; adolescents and adults aged 25 years or younger; and members of the LGBTQ2S+ community.

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Health Resilience in Arabic-speaking Adult Refugees With Type 2 Diabetes: A Grounded Theory Study During the COVID-19 Pandemic

Omar,

Busolo,

Hickey

et al. 2024

Canadian Journal of Diabetes

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Exploring the Lived Experience of Diabetes Through an Intersectional Lens: A Qualitative Study of Adults With Type 1 and Type 2 Diabetes

Cited by 8 publications

References 29 publications

Diabetes care in the pandemic era in the Midwestern USA: a semi-structured interview study of the patient perspective

Diabetes care in the pandemic era in the Midwestern USA: a semi-structured interview study of the patient perspective

Living With Type 2 Diabetes

Health Resilience in Arabic-speaking Adult Refugees With Type 2 Diabetes: A Grounded Theory Study During the COVID-19 Pandemic

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