State of the art: understanding and integration of the social context in diabetes care

Abstract

We review the past 25 years of research addressing challenges people living with diabetes experience in their daily lives related to social contexts, i.e. in their family, at work and in society at large, and identify research gaps. We found that young people with diabetes, as they develop through to adulthood, are exposed to considerable risks to their physical and mental health. Family‐system interventions have had mixed outcomes. Research in this area would benefit from attention to ethnic/cultural diversity, and involving fathers and other family members. In adults with diabetes, social support relates to better diabetes outcomes. While family member involvement in care is likely to affect health and psychosocial outcomes of the person with diabetes, key elements and mediators of effective family interventions need to be identified. The challenges of diabetes management at work are under‐researched; distress and intentional hyperglycaemia are common. When depression is comorbid with diabetes, there are increased work‐related risks, e.g. unemployment, sickness absence and reduced income. Research to support people with diabetes at work should involve colleagues and employers to raise awareness and create supportive environments. Stigma and discrimination have been found to be more common than previously acknowledged, affecting self‐care, well‐being and access to health services. Guidance on stigma‐reducing choice of language has been published recently. Resilience, defined as successful adaptation to adversity such as stigma and discrimination, requires studies relevant to the specific challenges of diabetes, whether at diagnosis or subsequently. The importance of the social context for living well with diabetes is now fully recognized, but understanding of many of the challenges, whether at home or work, is still limited, with much work needed to develop successful interventions.

Disruption, worries and autonomy in the everyday lives of adolescents with type 1 diabetes and their family members: A qualitative study of intrafamilial challenges

“…According to Sullivan-Bolyai et al (2014), the parent-adolescent relationship should be characterised by interdependence, with parents "striking a balance but still in the driver's seat," as shared responsibility has been found to be associated with better glycemic control (Marker et al, 2018;Young et al, 2014). Studies have shown that the opposite can have negative consequences; parental over-involvement affects diabetes outcomes negatively, while under-involved parents can also be the cause of poor diabetes control (Keough et al, 2011;Marker et al, 2018;de Wit et al, 2020;Young et al, 2014). Thus, striking a balance in parental involvement in diabetes management is crucial.…”

“…Because management of type 1 diabetes is carried out in the context of daily life, diabetes affects and disrupts family life (Kingod & Grabowski, 2020;Marshall et al, 2009;de Wit et al, 2020). Christie (2019) found that young people with type 1 diabetes view diabetes as a family illness.…”

“…Whereas adults with type 1 diabetes perform diabetes management themselves, the self‐management of children and adolescents is an active, proactive and flexible process in which the responsibility for diabetes tasks is shared and shifted between the child and parents (Schilling et al., 2002). Because management of type 1 diabetes is carried out in the context of daily life, diabetes affects and disrupts family life (Kingod & Grabowski, 2020; Marshall et al., 2009; de Wit et al., 2020). Christie (2019) found that young people with type 1 diabetes view diabetes as a family illness.…”

“…The perspective of siblings of children or youth with type 1 diabetes has, however, not been addressed in many studies (Dougherty, 2015; Loos & Kelly, 2006; de Wit et al., 2020). The few studies focusing on the experience of being a sibling of a child with type 1 diabetes have found that siblings are frequently worried about their ill sibling and experience a need to be watchful and vigilant over their sibling, leading to stress in daily life (Deavin et al., 2018; Herrman, 2010; Wennick & Huus, 2012).…”

“…A recent paper specifically identified the perspective of siblings as a current gap in the diabetes literature and, furthermore, called for a broader family system approach in the research, which entails more than one caregiver being included in addition to the young person with diabetes (de Wit et al., 2020). Thus, the present study represents a step towards a more comprehensive family approach, in that it incorporates the voices of all close family members of adolescents with type 1 diabetes.…”