“Sometimes You Just Need People around You Who Understand You”: A Qualitative Study of Everyday Life at a Residential Care Unit for Young People with Diabetes

Lise Bro Johansen,Dan Grabowski

doi:10.3390/socsci10020078

Abstract

Solglimt is the only long-term residential care facility in Denmark for young people with diabetes who, for various reasons, are particularly exposed or vulnerable. This target group is characterized by poorly regulated diabetes and psychosocial challenges. As this unique setting and specific target group has not been studied before, we designed a qualitative sociological study of the experiences and perceptions of everyday life from the perspectives of current and former residents as well as from those of the residential care social workers (RCSWs). We also studied the specific care practices at Solglimt. The dataset consists of nine days of participatory observations, 29 semi-structured individual interviews with three target groups (9 current residents, 8 former residents and 12 RCSWs) and three participatory workshops. All data were analyzed using radical hermeneutics. The analysis produced four main themes: (1) In it together, like a family—feeling different among peers, (2) Social workers as substitutes for parents and healthcare professionals, (3) Individualization—Increased self-confidence and autonomy, and (4) Tacit knowledge and illness behavior automation. The findings show that the residential care facility is a family-like setting with a strong focus on individualization, which enables new illness behaviors and perceptions. The results offer important steps towards developing improved diabetes care strategies through individualized informal knowledge sharing. Furthermore, the results are applicable to general clinical diabetes care for vulnerable or low-resource children and young people with diabetes.

Highlights

Type 1 diabetes is one of the most common chronic illnesses among young people
The findings show that the residential care facility is a family-like setting with a strong focus on individualization, which enables new illness behaviors and perceptions
Many adolescents do not regain satisfactory glycemic control until they reach 30 years of age (Miller et al 2015; Clements et al 2016; Foster et al 2019). It is well-established that the patient education and care provided to young people with chronic somatic illnesses, including diabetes, are rather inattentive to the complex set of challenges related to the multitude of physiological, social and emotional changes that characterize the transition into young adulthood (Wood et al 2018)

Summary

Introduction

Effective therapies are available but require adherence to a daily treatment regimen that requires constant self-management This includes balancing insulin dosing, carbohydrate counting, and physical activity, along with frequent feedback from blood glucose monitoring results. Many adolescents do not regain satisfactory glycemic control until they reach 30 years of age (Miller et al 2015; Clements et al 2016; Foster et al 2019). It is well-established that the patient education and care provided to young people with chronic somatic illnesses, including diabetes, are rather inattentive to the complex set of challenges related to the multitude of physiological, social and emotional changes that characterize the transition into young adulthood (Wood et al 2018)

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Conclusion