The Complexities of “Struggling to Live Life”

Abstract

Purpose The purpose of the study was to explore and describe perceptions and experiences of young adults with type 1 diabetes mellitus (T1DM) living in Appalachia, Tennessee. Methods Qualitative descriptive analysis of in-depth interviews of 9 young adults (male = 3, female = 6) 18 to 30 years of age living in Appalachian counties in Tennessee provided the basis of identifying the salient concerns from the perspective of this diverse group related to living daily with T1DM. Data analysis was facilitated by using NVivo 11 Pro and consisted of iterative review of the accounts in 3 phases: immersion, reduction, and interpretation. Results Findings revealed that young Appalachian adults had some common, consistent experiences living with T1DM. Major themes included the struggle toward adulthood, the daily struggle of living with diabetes, the strong desire to live life, the supportive environment, the development of one's identity by diabetes, the disruptiveness of diabetes' demands, and the pros and cons of technological development in diabetes management. Conclusion Health vulnerabilities are multiplied for young adults living with T1DM in Appalachian Tennessee. Participants pointed to living in communities with social stigma, lack of T1DM knowledge, and lack of access to health care that compares with the quality of care they experienced when in pediatric care. They also expressed fear about pregnancy, diabetes complications, and the dangers of hypoglycemia. Individual and community-based empowerment programs focusing on T1DM accompanied by insurance reimbursement and T1DM policy reinforcement are necessary to reduce health disparities and improve quality of life in this underserved population of young adults in Appalachia.

Living with type 1 diabetes as experienced by young adults

“…The results revealed that participants were worried and sometimes scared of having low blood glucose. Related to low blood glucose, the participants were anxious about losing control of their bodies, the situation or even die, which also was shown in prior studies (Abdoli et al, ; Zoungas et al, ). The results pointed out the participants fear of being a burden to other people, for example, if they might end up in need of assistance.…”

“…To avoid such situations, participants described maintaining their blood sugar higher than usual, some for special occasions and some for a longer period. Previous studies (Abdoli et al, ; Cryer, ; Martyn‐Nemeth et al, ) show that fear of hypoglycaemia is one of the major limiting factors in achieving optimal blood glucose control for persons living with T1D.…”

“…Previous studies (Abdoli et al, 2017;Cryer, 2002;Martyn-Nemeth et al, 2016) show that fear of hypoglycaemia is one of the major limiting factors in achieving optimal blood glucose control for persons living with T1D.…”

Young Adults Living with Type 1 Diabetes Experience of Other Persons Reception

“…Participants who preferred not to reveal their identity, explained that web-based forums were valuable arenas for exchanging experiences. According to Balfe et al [13] and Abdoli, Hardy & Hall [5], participants in their studies expressed the view that other people with T1D had empathy and understanding for their experiences. It was also a positive experience for young adults when healthcare personnel recognized them, for example, by knowing their name.…”

“…Despite this, young adults try to live as normally as possible with the illness [4]. Abdoli et al [5] stated that young adults with T1D struggle to grow and take on more responsibility of diabetes management. Earlier studies [6][7][8] have shown that managing daily life with a long-term illness increases the importance of support from family, friends and healthcare personnel.…”