Background: Type 1 diabetes mellitus (T1DM) is a lifelong condition that requires diligent self-management to avoid complications. Living with T1DM is a considerable challenge and the inability to follow a prescribed regimen is often termed non-compliance. However, this fails to acknowledge that for some people the barriers to glycaemic control may be insurmountable.
Objective: This qualitative study explores the structural determinants, social context and lived experience of T1DM with 17 adults to understand influences on patterns of self-care, engagement with and trust in health-care services, and health outcomes.
Results: Their stories tell us that strong social support is vital to disease adaptation and ongoing management. When social support is absent, the story is one of struggling with intensive diabetes management alone and difficulty controlling blood glucose levels. When confronted with suboptimal glycaemic control, participants isolated from social support developed combative relationships with health-care providers and disengaged from health care. Their subsequent slide to chronic comorbid illness is steep and this study reveals the heartache and loss experienced when difficult life circumstances and low levels of social support have led to irreparable kidney damage.
Conclusion: Patterns of poor glycaemic control viewed in the health-care encounter without an understanding of the context or life circumstances in which they are occurring can lead to an inability to engage with health-care services. Disengagement from services and the absence of specialist care further isolates people, leaving them managing their diabetes alone with limited success.
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http://dx.doi.org/10.1111/hex.12850 | DOI Listing |
Scand J Occup Ther
January 2025
Department of Health Sciences, Mental Health, Activity and Participation (MAP), Lund University, Lund, Sweden.
Background: Existing research has shown that those ageing with severe mental illness face significant challenges in daily life. Attendance at community-based day centres (DCs) is offered to support daily structure and break isolation. However, little is known about the experiences of those receiving this type of support while transitioning into retirement age.
View Article and Find Full Text PDFJ Ethn Subst Abuse
December 2024
School of Social Work, Algoma University, Ontario, Canada.
This article focuses on findings of a qualitative research study that looked at experiences of Filipino healthcare workers in Canada during the COVID-19 pandemic. The purpose is to contribute to the growing body of literature on mental health among racialized frontline healthcare workers in Canada by investigating factors that affect mental health and barriers associated with accessing services and supports among Filipino healthcare workers in Ontario, Canada. The study employed a cross-sectional qualitative descriptive design to identify strategies that Filipino frontline healthcare workers use to effectively cope with mental health issues, work stress, and structural and economic barriers to their well-being.
View Article and Find Full Text PDFJ Pediatr Psychol
December 2024
Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine at the University of California, Los Angeles (UCLA), Los Angeles, CA, United States.
Objective: Adolescents and young adults with chronic diseases face unique challenges during the college years and may consume alcohol and other substances to cope with stressors. This study aimed to assess the patterns of substance use and to determine psychosocial correlates of these behaviors among college youth with type 1 diabetes (T1D).
Methods: College youth with T1D were recruited via social media and direct outreach into a web-based study.
Psychol Health Med
December 2024
Department of Psychology, University of Nigeria, Enugu, Nigeria.
Despite extensive research on the impact of stigma on the health-related quality of life (HRQoL) of people with sickle cell disease, gaps remain in understanding the mechanisms through which this association occurs. We investigated how stigma impacts HRQoL among people with sickle cell disease (SCD) through distress and the moderating role of social support in this association. Utilizing a cross-sectional design, we sampled 165 people with SCD in Nigeria, who completed relevant measures.
View Article and Find Full Text PDFAnn Med
December 2025
Research Group of Humanities and Qualitative Research in Health Science of Universidad Rey Juan Carlos (Hum&QRinHS), Department of Physical Therapy, Occupational Therapy, Physical Medicine and Rehabilitation, Universidad Rey Juan Carlos, Alcorcón, Spain.
Purpose: This study describes the experience of parents of children with developmental and epileptic encephalopathies (DEE) and how the disease impacts their daily lives.
Materials And Methods: A descriptive qualitative study was conducted using purposeful sampling. Twenty-one parents of children with DEEs caused by SCN1A, KCNQ2, CDKL5, PCDH19, and GNAO1 variants were included.
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