Findings
Our research showed that inidividuals living with type 1 diabetes identified several areas for clinical quality improvement for clinicians to consider in their approaches to care.
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The findings are guided by a framework that was developed by people living with type 1 diabetes and clinicians working in type 1 diabetes care. The framework depicts a person centred on the lived experience of type 1 diabetes. Associated with a persons immediate experiences are the elements of trauma and resilience as well as all social determinants of health. These factors are believed to be of significant importance in the context of our data. Intersecting with the person and surrounding ring are all environmental factors associated with a persons healthcare related experiences for type 1 diabetes.
Accessibility
Centralized Hub for T1D Information
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Mixed messaging & confusion on where to navigate
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"One-Stop-Shop" for T1D guidelines, education, & resources
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Recognizing mental health burdens and lack of supports
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Healthcare providers not equipped to diagnose or recognize mental health conditions
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No link between clinics and mental health professionals
Appointments
Flexibility in clinical access
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Allowing people to choose how to attend appointments (telemedicine, videoconference, etc).
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After-hours clinic access can prevent ER visits
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Enabling choice for multidisciplinary care
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Allowing people to choose who is on their T1D care team
Shared Decision Making
Building productive therapeutic relationships
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Building good rapport involves respect, communication, caring, & recognizing T1D burdens
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Paternalism, judgement, authority, & bias lead to harm
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Recognizing the impact of medical trauma
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Past healthcare experiences impact future care seeking
Recognizing power dynamics, vulnerability, & patient choice
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Recognizing people as more than their disease
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Adopting person-centred approaches to clinical care
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Clinician Knowledge
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More training is needed for new medical trainees and continuing professional education to unlearn traditional clinical approaches
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Having intentional and sensitive conversations on reproductive health
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Non-judgemental safe clinic spaces for women to discuss pregnancy planning
Support Systems
Importance of making people aware of diabetes online communities
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Peer support can provide additional support that compliments clincal care
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Community driven & sourced innovations like DIY looping
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Bolstering family support
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Helping families & friends recognize T1D daily life
Therapies
Enabling access to rapidly advancing technology
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Public funding and access to continuous glucose monitoring for those struggling financially
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Staying up to date on technology
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Financial well-being is part of living well with T1D
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T1D is expensive
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Need more equity driven T1D policies that support access
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Recognizing that T1D alters life choices
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Foregoing jobs, education, marriage, & having children
