A Qualitative Study of Confusing Experiences among Japanese Adult Patients with Type 1 Diabetes

Diabetes is a common life-long health condition. Diabetes is classified as Type 1 or Type 2. In type 1 diabetes (T1D), pancreatic beta cells are destroyed, resulting in low insulin secretion and leading to a state of absolute insulin deficiency. According to the Ministry of Health, Labor and Welfare, approximately 8,000 people in Japan currently suffer from this condition, which often develops during childhood or adolescence. T1D is characterized by deficient insulin production and requires daily insulin administration.1 Therefore, patients with T1D require lifelong self-care, including daily management of their blood glucose levels, to maintain their health and prevent future complications. They also must suitably modify their behavior after diagnosis, since it is important that they learn to self-manage their condition. Good self-managers have been defined as individuals who have learned the skills required to cope with their illness, knowing how to continue with their daily activities, and being able to regulate the ever-changing emotions related to their chronic illness.2 For patients with T1D, self-management can be difficult because they experience physical, emotional, and social distress and often need to communicate about these issues with co-workers and supporters.3 Although some T1D patients excel in managing their distress, others struggle to do so. This phenomenon is evident across academic, social, and developmental domains. When T1D patients are faced with difficulties, they often perceive their own lack of power. To recover from this state of powerlessness, they must take steps to regain their power.4 Powerlessness was defined as the perception where one lacks the capacity or authority to act to affect the outcome of the current situation or immediate circumstances,5 and NANDA-I describes the feeling of powerlessness as “The lived experience of lack of control over a situation, including a perception that one’s actions do not significantly affect an outcome.”6 Gibson reported that in order for patients to become empowered, they must understand the factors underlying their own powerlessness.7 However, very few studies of powerlessness have been conducted, and the papers published to date only consider the phenomenon from the perspective of patients’ subjective experiences and do not examine the inherent nature of powerlessness.8, 9 Many studies have attempted to understand the psychology of T1D patients from the perspective of medical professionals. However, it is also important to understand patients’ experiences from an internal perspective. Therefore, in this study, we sought to shed light on the nature of powerlessness in the experiences of T1D patients, who lead lives with various constraints, as well as the structure of powerlessness. This elucidation of powerlessness should be of great value in identifying effective nursing support, which empowers T1D patients and helps them recuperate and improve their personal lives.