Abstract
I
We also know that people with T1D act in ways that meet their own needs and the needs of loved ones, in the context of their own everyday experience. These actions can sometimes be perceived as “maladaptive behaviors” as they appear at odds with achieving optimal glycemic control. Anecdotal evidence from clinic, however, shows us the elderly gentleman who deliberately chooses to run his blood sugars “a little high” with subsequent detrimental impact on his HbA1c. On closer investigation, it becomes apparent that this patient is prioritizing his wife's quality of life over his own glycemic control because of her heightened anxiety associated with his previous severe hypoglycemic episodes. By avoiding hypoglycemia, his wife can resume social activities that had ceased because of fear of hypoglycemia. Similarly, it is not uncommon for a mum of a small child to actively maintain elevated blood glucose to avoid experiencing a hypoglycemic event that may frighten her child. These actions may be counter to optimal glycemic control; however, they are very much in line with ensuring the well-being and quality of life of their loved ones.
Similarly, parental fear of hypoglycemia is common, particularly fear of nocturnal hypoglycemia and dead in bed syndrome. 6 Blood glucose meter download data from Sweden show that 99% of parents of more than 5000 children, over a 6-month period, are performing blood glucose checks on their children between the hours of midnight and 6 am. The reported benefit of this night-time behavior is decreasing anxiety and the reassurance that their child is still alive. However, downsides include chronic sleep disturbance and associated sub-optimal well-being. When these children grow to adulthood, this duty is often passed to the new partner, who takes responsibility for nocturnal monitoring. Similarly, the burden is immense and negatively affects the health and psychological well-being of partners. 7
How these behaviors, feelings, and burden are captured to ensure the impact on loved ones is acknowledged and addressed is particularly challenging. It is, however, an area of considerable importance. Diabetes is often referred to as a “family disease” because it requires the input and teamwork of all family members to maintain optimal diabetes outcomes, in terms of both blood glucose values and quality of life. This dynamic is reported by Rogers et al. 8 who describe the dependence on family members and by adults with T1D who have hypoglycemia unawareness, to minimize the risks and effects of hypoglycemia. Furthermore, Trief et al. 9 report that anxiety about hypoglycemia can be a source of partner and marital distress. Such disharmony is not conducive to a teamwork approach and optimal outcomes.
Partners play an important role in supporting the individual with T1D. They help recovery from severe hypoglycemic episodes, collect diabetes supplies, provide emotional support, and generally watch over their loved ones. This is equally a relentless and burdensome responsibility, which partners and family members willingly bear. Resentment can occur when they feel that their loved one is not managing their T1D as needed and feel ill-equipped to help in a way that is useful and not perceived as interfering or bossy.
It is timely, therefore, that Polonsky et al. have developed a novel survey for partners of adults with T1D that explores exactly those key issues and concerns. 10 The survey addresses areas such as hypoglycemia distress, emotional distress, management distress, and role distress; each significantly correlated with depression, general life stress, and diabetes-related relationship satisfaction. Unsurprisingly, partners participating in the qualitative interviews conducted by Polonsky et al. report low levels of diabetes-related support from all sources.
Polonsky et al. gathered data from the partners' perspective. Their view is vital to understanding the overall family impact of life with diabetes. Future studies would benefit from looking at the differences and similarities in the partner's and the persons with diabetes (PWDs) reports regarding daily self-care behaviors. Of particular interest would be whether PWDs and their partners see the same daily care tasks required for optimal diabetes outcomes. If discrepancies exist, might those discrepancies in perceptions regarding the daily self-care tasks be a source of the distress and also a point for clinical intervention? Similarly, the findings suggest that partners of PWDs who use technology (continuous glucose meter or insulin pumps) are less distressed than partners of those who do not use technology. It would be interesting to gain a deeper understanding about why that might be. It can certainly simply be that technology decreases the daily burden of diabetes. It may also be that partners no longer see all of the daily tasks since technology makes them more invisible (e.g., bolusing for a meal no longer involves taking an injection).
The need to gather information from both the individual with diabetes and the partner's perspective is also highlighted by the finding that partners believe they are much more worried about lows than their loved one with diabetes are. Gathering worries about lows from both perspectives would provide a richer sense of the overall impact of diabetes on the couple and also offer points for clinical intervention.
Polonsky et al.'s study highlights the fact that partners find that there is little, if any, community support available to them. The findings from this study offer opportunities to create such support. For example, this study found that partners of PWDs with high A1c's or with experiences of severe lows had the highest levels of distress. The diabetes healthcare community can translate this finding into a proactive clinic visit: healthcare professionals can ask family members of individuals with diabetes with high HbA1cs or severe lows to join their loved ones during the clinic visit. Collaborative problem solving and discussions around how to improve the PWDs overall health and well-being and discussions around fears of lows in a collaborative manner may go a long way in improving both emotional distress and metabolic health. On-line communities and groups that offer conferences (e.g., Unconference, Children with Diabetes and Students with Diabetes) can offer great support to the partners of PWDs.
Findings from this study show that less than half of the partners are involved in their partner's daily care. This is an area that requires further research to explore whether this lack of involvement was a planned and purposeful decision made collaboratively by the couple, or whether it was unplanned. Differences between a collaborative decision and a de-facto event can also be a source of distress between the couple; therefore, deeper understanding of whether instrumental support, such as being involved in daily care tasks, is different than emotional support (e.g., cheering, admiring and/or respecting the PWD for everything they do) with respect to the intensity of caregiver distress.
We look forward with interest to these issues being explored and addressed in future research.
Footnotes
Author Disclosure Statement
No competing financial interests exist.