Everyday Living with Diabetes Described by Family Members of Adult People with Type 1 Diabetes

Abstract

The aim of this study was to explore family members' experiences of everyday life in families with adult people living with type 1 diabetes. The grounded theory method was used to gather and analyse data from the interviews of nineteen family members. Six concepts describing the family members' views on everyday living with diabetes were generated on the basis of the data. Everyday life with diabetes is described as being intertwined with hypoglycemia. Becoming acquainted with diabetes takes place little by little. Being involved in the management and watching self-management from the sidelines are concepts describing family members' participation in the daily management of diabetes. The family members are also integrating diabetes into everyday life. Living on an emotional roller-coaster tells about the thoughts and feelings that family members experience. Family members of adult people with diabetes are involved in the management of the diabetes in many ways and experience many concerns. The family members' point of view is important to take into consideration when developing education for adults with diabetes.

Couples living with type 1 diabetes: An integrative review of the impacts on health and wellbeing

“…Trief et al (2017) reported that having an engaged partner was associated with better glycemic control (β = 0.13, p< 0.01) and self-care such as concordance with general diet (β = 0.22, p< 0.001) and exercise (β = 0.28, p< 0.01) (Trief et al, 2017). T1D partners supported self-management behaviours by reminding the PWD of blood glucose measurements (Rintala, 2017), encouraging exercise and supporting healthy eating habits for the whole family (Rajaram, 1997;Rintala et al, 2013b). To further support self-management, T1D partners in some cases bought the insulin and blood glucose testing materials (Barnard et al, 2016;Rintala et al, 2013b).…”

“…T1D partners supported self-management behaviours by reminding the PWD of blood glucose measurements (Rintala, 2017), encouraging exercise and supporting healthy eating habits for the whole family (Rajaram, 1997;Rintala et al, 2013b). To further support self-management, T1D partners in some cases bought the insulin and blood glucose testing materials (Barnard et al, 2016;Rintala et al, 2013b). In contrast, T1D partners' overprotective behavior was found to be associated with less frequent blood glucose measurement (β= 0.14, p< 0.05) (Trief et al, 2017).…”

“…Fear and distress related to hypoglycemia and complications are frequently experienced by T1D partners resulting in a caregiver emotional burden (Barnard et al, 2016;Johnson and Melton, 2015;King et al, 2015;Lawton et al, 2014;Morris M et al, 2006;Polonsky et al, 2016;Rajaram, 1997;Rintala, 2017;Rintala et al, 2013b;Stödberg et al, 2007;Trief et al, 2013 (Rajaram, 1997: 289).…”

“…The fear of hypoglycaemia, long-term complications and a shortened life expectancy of their partner made many T1D partners strive to be more involved in the direct diabetes care (Johnson and Melton, 2015;King et al, 2015;Rintala, 2017;Rintala et al, 2013b;Stödberg et al, 2007). But, being attentive to how their partner with diabetes was at any particular moment and feeling they have to take full responsibility made many T1D partners feel exhausted (Lawton et al, 2014;Stödberg et al, 2007).…”

“…T1D partners described significant worry, stress, and anxiety about hypoglycemia and frustration in trying to prevent or manage it (e.g., the need to carry snacks, to remind and check during lows, and prepare for potential emergencies) (Trief et al, 2013). In order to supervise and be prepared to provide this hands on treatment, T1D partners neglected or ignored their own health and social needs (Lawton et al, 2014) and they reported feeling uncertain, confused, lonely or even isolated (Morris M et al, 2006;Rintala et al, 2013b;Stödberg et al, 2007). T1D partners also reported that some days they felt like they were living on an emotional roller coaster, full of worries and fears whereas other days were peaceful (Rintala, 2017;Rintala et al, 2013b).…”