All July, the Joslin Blog is highlighting stories about taking care of yourself emotionally. This story was originally posted on Sept. 27, 2013.
While some people choose to manage their diabetes on their own, family members also live with diabetes and witness their loved one’s diabetes management. Until recently, there was very little data that examined the emotional impact of diabetes for family members of people with diabetes. This lack of information prompted healthcare companies, such as Novo Nordisk, as well as Joslin Diabetes Center, to explore the impact of diabetes on family members in clinical studies.
Novo Nordisk conducted the Diabetes Attitudes, Wishes and Needs 2 (DAWN2) study, a global study aimed at understanding the unmet needs for people with diabetes and their families. In addition, this study hoped that their results would improve self-management and psychological support in diabetes care.
The results of the DAWN2 study demonstrate that there is a significant emotional burden on family members of people with diabetes, with 63 percent of family members expressing anxiety about the possibility that the person they live with will develop serious complications from diabetes.
Joslin conducted a similar study that was published in Diabetic Medicine, called the Impact of continuous glucose monitoring on diabetes management and marital relationships of adults with Type 1 diabetes and their spouses: a qualitative study.
Co-author of the continuous glucose monitoring (CGM) study Marilyn Ritholz, Ph.D., Senior Psychologist in the Behavioral Mental Health Unit at Joslin and Assistant Professor in Psychiatry at Harvard Medical School, discovered that a majority of spouses were uneducated about diabetes and CGM, which contributed to the bulk of their difficulties surrounding diabetes management.
“The main thing that I think both studies show [is] the importance of including family members in diabetes management,” explained Dr. Ritholz. “As our study shows, the only spouses that had any education around CGM were those where the patient was pregnant. Otherwise, the spouses knew nothing; they were never invited to attend [information sessions], either by the clinic or by the person who had diabetes, so therefore it contributed to them feeling helpless and unable to assist their loved ones.”
Dr. Ritholz also pointed out that three-fourths of spouses were most worried about hypoglycemia, or low blood sugar. For this reason, understanding how CGM operates and participating in CGM use was crucial to decreasing anxiety among spouses.
Derived from her clinical observations, Dr. Ritholz noticed that the families or spouses who were involved with their family members’ or spouses’ diabetes created a more open home environment that was better suited to managing diabetes.
“[Based] on my clinical experience, patients who are able to involve their families are certainly more open to discussing their diabetes and want the assistance of family members so that there is an open dialogue,” said Dr. Ritholz. “The wish to do it totally on his or her own … makes for greater difficulties with diabetes management.”
Overall, the Joslin study concluded that CGM may positively impact collaborative diabetes management and marital relationships of people with type 1 diabetes and their spouses. The use of CGM, when spouses are properly educated about its use, exerts a positive influence by decreasing spouses’ anxiety concerning hypoglycemia, promotes a collaborative environment and increases a spouse’s understanding about diabetes. Along with these solutions, the CGM study also highlights the need for more diabetes education for spouses.
Although the DAWN2 and CGM study focused primarily on adults, Jessica Markowitz, Ph.D., Clinical Psychologist and Research Associate in Pediatrics at Joslin, stressed that it is important for a patient of any age to have the family’s support in managing their diabetes.
“When I work with kids and families, we are looking to increase family support and help families work with kids to result in the best outcomes in terms of their diabetes,” said Dr. Markowitz. “Diabetes has a huge impact on families, so regardless of the age of the patient, families are affected by the lifestyle change.”
Part of this whole change in lifestyle, as shown in both studies, is that the home environment often needs to adapt to a more diabetes-friendly lifestyle.
“I feel that – and I tell this to patients – that diabetes is a family disease,” commented Dr. Ritholz. “When people are living with diabetes they have to be living in an atmosphere where others are aware and cognitive of what it means to live with diabetes. It [also] helps the patient, as you saw in the CGM study, to feel less alone; it feels like they have collaborators.”