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Open Access Publications from the University of California

The Lived Experience of Older Adults with Type 2 Diabetes and Diabetes Distress

  • Author(s): Hernandez, Lenore
  • Advisor(s): Chelsa, Catherine
  • et al.


The Lived Experience of Older Adults with Type 2 Diabetes and Diabetes Distress

Purpose. The number of Americans with diabetes is projected to double or triple by the year 2050 to an estimated 1 in 3 Americans. An older, more diverse population and longer lifespans are the major contributors to the increase. Diabetes in older adults is linked to higher mortality, reduced functional status, and an increased risk of institutionalization. Emotional adjustments to the daily demands of diabetes management can be physically and psychologically draining; the emotional adjustments can result in diabetes distress. Diabetes distress is common and affects as many as 40% of people diagnosed with diabetes. The condition focuses on diabetes and is characterized by worry, frustration and burnout. Emotions can be related to concerns with getting proper treatment or communicating with healthcare providers. Older adults with type 2 diabetes have a greater prevalence of comorbidities than younger adults and may be at a greater risk for developing diabetes distress.

The purpose of this phenomenological study was to understand and describe how diabetes distress might affect older adults (age 65 years and older) with type 2 diabetes. The aims of this study were to: 1) Explore the lived experience of older adults with type 2 diabetes and diabetes distress; 2) Interpret dimensions of morale that are unique to diabetes management behaviors and glucose regulation in older adults with type 2 diabetes and diabetes distress; and 3) identify symptom co-occurrence in older adults with type 2 diabetes. The goal of this work is to improve health care provider understanding of the symptoms experienced by older adults with type 2 diabetes and diabetes distress.

Approach. Interpretive phenomenology guided the research design and analysis. Interpretive interviews were designed to investigate the everyday health and general life experiences of being an older adult with type 2 diabetes. Using the transcribed text of the interviews, narrative and thematic analyses were conducted. A convenience sample of 16 participants (9 women and 7 men) between the ages of 65-85 with type 2 diabetes and moderate diabetes distress were recruited by flyers posted in senior communities (n = 8; participants from the community), by snowball sampling (n = 3; participants from snowball sampling) and from Veterans Administration Northern California Health Care System (VANCHCS) (n = 5). Each participant was interviewed twice.

Results. Most of the participants in this study experienced unsatisfactory relationships with their health care providers. Some of the participants were angry about the lack of education they received from their health care providers during the prediabetes period. Many of the participants contextualized their own diabetes experiences and treatments with the diabetes experiences of their parents and this generated a sense of fear. Participants felt guilty about and blamed themselves for lifestyle choices and diets that may have led to the development of their diabetes. Self-care routines were distressing and difficult because of forgetfulness. Some of the participants were widows and they experienced loss and loneliness and this led to anxiety, panic attacks and increased the challenges they faced with their self-care efforts.

Particular symptoms were distressing and prevalent in this group of older adults with diabetes. Fatigue was the most common symptom reported. Fatigue negatively impacted the ability to perform physical activity. Participants noted how hypoglycemia led to falls or loss of consciousness and some felt like a near death experience. Diarrhea, often induced by medications, interfered in physical activity, work schedules and social activities. Pain resulted in sleep disruption, interfered with ambulation and increased fatigue. Loss of balance and falling impacted the participants’ ability to ambulate and interfered in their sense of independence. Symptoms that occurred together most frequently were fatigue and loss of balance and falling. Hypoglycemia and pain also frequently occurred together.

Conclusion. Older adults often come to their clinical visits with complicated personal and medical histories and thus, providing health care to this population can be challenging. How health care providers choose to engage with their patient has an influence on diabetes outcomes and diabetes distress. Having a better understanding of the life experiences of older adults may help with focusing on dimensions of their life that provide challenges and distress. Increasing this understanding also promotes empathy and has the potential to improve health care and outcomes. Directing inquiries, evaluations and assessments to symptoms that are known to occur with older adults who have diabetes can help to improve the quality of health care.

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