Learning about Type 1 diabetes and learning to live with it when diagnosed in adulthood: two distinct but inter‐related psychological processes of adaptation A qualitative longitudinal study

Abstract

Aim To explore the experiences of adults with newly diagnosed Type 1 diabetes in order to understand the adaptive processes that occur in the early phase of the condition.Methods We conducted longitudinal semi-structured interviews with 30 adults newly diagnosed with Type 1 diabetes (age range 20-67 years; 16 men; median diabetes duration 23.5 months), recruited from hospitals in Denmark and the UK. The data were analysed using a narrative approach.Results The narratives could be grouped into three thematic areas: the diagnosis; learning about diabetes; and learning to live with diabetes. Diabetes was characterized as a major disruptor to the established and future life plans of participants, causing significant emotional distress. The narratives showed how early experiences triggered the development of ongoing psychological problems (fear of complications or hypoglycaemia) and diabetes distress, and that navigating different social scenarios (relationships and employment) could be challenging, leading to suboptimal selfmanagement behaviours. The narratives also showed that health professionals often did not attend effectively to participants' emotional needs after diagnosis, and that the language used frequently triggered negative feelings, such as fear or a sense of failure.Conclusions Many of the common psychosocial problems associated with Type 1 diabetes seem to gestate in the early phase of life with the condition. There appear to be opportunities to enhance the support provided in this phase to minimize these problems.

Psychologische Herausforderungen bei Erwachsenen mit Typ-1-Diabetes

“…Diese Gruppe berichtet weniger häufige Selbstfürsorge, schlechtere diabetesbezogene Lebensqualität und höheren Diabetes-Distress. In einer qualitativen Längsschnittstudie berichteten die befragten Patienten, dass mit ihnen vor allem über Zahlen und nicht über Gefühle gesprochen wird [29]. Die Adhärenzprobleme der Patienten können ihrem persönlichen Versagen ("nicht moti-▶ Abb.…”

The cognitive and psychological effects of living with type 1 diabetes: a narrative review

“…As noted by the sociologists Corbin and Strauss (1985) , living with a chronic condition such as diabetes demands ‘three lines of work’: medical, psychological and social, and balancing a normal life with adequate self‐management can be challenging . Not surprisingly, adults with type 1 diabetes commonly experience coping difficulties and psychosocial problems , although overall the perceived quality of life appears not to be lower than that of the general population . About one‐third of adults with type 1 diabetes report high levels of diabetes distress that can translate into ‘diabetes burnout’, a vicious cycle of feeling frustrated and ‘giving in’, with further deterioration of glycaemic control and increasing emotional distress .…”

A co-design study to develop supportive interventions to improve psychological and social adaptation among adults with new-onset type 1 diabetes in Denmark and the UK

“…9 10 Adults with new-onset T1D perceive that the focus of their interactions with HCPs is on providing them with the technical skills needed for blood glucose management to achieve ‘good’ blood glucose levels. 4 This focus, when pursued without attending to the psychological and social challenges following the diagnosis of T1D, can create a sense of frustration and failure in the person with diabetes when recommended blood glucose levels are not achieved. 3 4 Furthermore, the person may consequently be less likely to engage with their self-management behaviours, thereby increasing the risk of future burdensome and costly diabetes complications.…”

“… 3 4 Furthermore, the person may consequently be less likely to engage with their self-management behaviours, thereby increasing the risk of future burdensome and costly diabetes complications. 4 11 Hence, early intervention to support adults in developing positive adaptive strategies and self-management routines in everyday life following diagnosis may reduce these problems and may improve long-term physical and mental health outcomes.…”

“…9 17 Previous studies have reported that HCPs tend to overload people with information on diabetes self-management, focusing on technical issues rather than providing psychological and social support due to a fear for the person’s physical safety. 4 9 Such studies have also found that this emphasis on diabetes treatment together with the risks of hypoglycaemia and long-term complications can induce a sense of anxiety in adults with new-onset T1D. 4 9 …”