Partner Perspectives

: Leading the Struggle to Thrive; The term “non-compliant” can seem like a scarlet letter on a patient’s electronic health record. To so many people living with diabetes, “non-compliant” is seen as a negative word, and has the ability to perpetuate defeatist thoughts and make the daily struggles of life with a chronic illness even more challenging than they are on their own. Finding success with type 1 diabetes requires a balancing act of blood sugars, carbohydrate intake, measured and monitored activity, and knowing your body and its myriad of potential malfunctions extremely well. A better set of words to appreciate the challenges of living with diabetes, and the desire to constantly improve, are “struggle” and “thrive.”, diabetes, management

: Menopause and Diabetes? No Sweat!; For women, menopause is not an option. There is a finite end to our reproductive life, but modern women live as much as one third of their lives past menopause. Women with diabetes are no exception, but they do have their own special concerns. Armed with current up to date medical knowledge, women with type 1 diabetes (T1D) or type 2 diabetes (T2D) can make informed decisions about how they approach menopause, its symptoms, and body changes., diabetes, menopause

: Descriptive Epidemiology of Sexual Behavior and Interest in Older Adults with Diabetes; Objective: In this manuscript we conduct descriptive analysis of epidemiological patterns in older Americans’ experiences with diabetes, comorbid chronic conditions, and sexuality. We use data from the National Social, Health, and Life Project (NSHAP) to explore variations in sexual and social experience among Americans with diabetes in later life.Research Design and Methods: We use descriptive epidemiological methods to explore three research questions. First, how do sexual behavior and interest vary among older adults with and without diabetes? Second, do older adults with diabetes frequently cite health issues as a reason for abstaining from sexual activity? Third, what role might interrelated socio-demographic characteristics play in these patterns?Results: We illuminate consistent differences between people with and without diabetes with respect to sexual behavior, but not with respect to sexual interest. We find that older adults with and without diabetes think about and desire sex frequently. However, we also find that older adults with diabetes report having sex much less frequently than their peers without diabetes do. This difference is especially striking for older adults who have both diabetes and other chronic conditions.Conclusions: We assess these findings in the context of prior clinical, social, and behavioral research on sexuality, aging, and chronicity. We conclude with implications of our findings for further research concerning the intersection of diabetes and sexuality in the lives of older Americans., diabetes, chronic illness, sexuality, aging

: Diabetes Mixer; Objective: Opportunities for individuals affected by type 1 diabetes (T1D) to engage in peer health activities are limited. The Diabetes Mixer is a community-based, non-clinical, face-to-face, peer health event for adults with T1D and their support person. The purpose of this paper is to 1) provide a program description of the Diabetes Mixer, and 2) analyze attendee perceptions of the Diabetes Mixer.Research Design and Method: An analysis was conducted with Diabetes Mixer attendees to understand their perceptions of the event. Attendees included individuals with T1D and their support person. Surveys included quantitative and qualitative questions and were completed by attendees at the conclusion of the Diabetes Mixer. A descriptive analysis was conducted.Results: Both individuals with T1D and support persons valued the Diabetes Mixer as a peer health event. All attendees stated they would attend a future Diabetes Mixer. Attendees planned to continue their relationship with the individuals they met at the Diabetes Mixer beyond the event, in-person, and through social media. Three themes were identified: building a community, connection through common experiences, and a fun venue to gain resources.Conclusions: The Diabetes Mixer is a feasible, successful peer health event that provides education and support to individuals with T1D and their support person in a judgement-free atmosphere. Diabetes stakeholders should work together to develop peer-support resources for adults with T1D in non-clinical settings. Further research is needed to identify how interactions with peers can support diabetes management., diabetes, support, management, peer, education

: Hope; Not enough credit is given to the people who help make us successful in life. I’m talking about the teachers, the coaches, the friends, the family members, and everyone who gives so willingly of their time, and asks for nothing in return but the opportunity to do it again and better. Life is easier when we’re not alone, when we have someone to talk to, and work through challenges with. Hope defines our life with diabetes. Whether for our own lives with diabetes or for the people we care about most in this world, we must confront difficult moments with hope, with courage, with dignity, and with resolve, and demand opportunities to achieve success again and again…and better., diabetes, support

: Imperfectly Moving Towards Acceptance; My dietician encouraged me to write this article to educate and combat stigma related to diabetes. As a social worker, stigma is not a foreign concept but I tend to couple stigma with other issues, such as mental illness, addiction, or sexual orientation—not diabetes. Stigma is fueled by the myriad of misguided assumptions, judgments, and general ignorance concerning diabetes. People are still shocked when I tell them I have T1D as they tend to conflate T1D and T2D. Depending on the person, I’m too old, too young, too thin, or too healthy looking to have the disease. The truth of the matter is that stigma is rampant when it comes to diabetes. Stigma keeps people in denial and when it comes to diabetes, denial is a life and death matter.My hope is that my story helps to demystify some of the assumptions about diabetes—whether it’s T1D or T2D diabetes does not discriminate and can happen to anyone, regardless of lifestyle, health status, or age. People living with diabetes need to feel they have the permission to experience the array of emotions associated with the disease., diabetes, stigma, misconceptions

: Information Overload (and Fainting Goats); Immediately upon our diagnosis, we are inundated with information about diabetes. In our visits with our healthcare team, we receive education from our healthcare providers, but we’re also surrounded by posters, handouts, pamphlets, magazines, and all sorts of literature issuing the do’s and don’ts of our new life with diabetes. On top of all that, we have to keep up with our personal health history, health needs, and all the data points that are incorporated into a life with a chronic condition.Diabetes is a chronic illness, and we can’t live our lives waiting for the next awful thing to happen. There has to be life after diagnosis, and we need to find a way to take on information without creating a pile of anxiety., diabetes, management, success

: Partner Perspectives on Closed Loop Systems; Objective: Closed loop automated insulin delivery systems have the potential to transform diabetes management. Partners and relationships will be increasingly affected by these innovations. We examine current understanding of the partner’s role in type 1 diabetes (T1D) management and technology, and provide an example of how to elicit partners’ perspectives in technology research.Research Design and Methods: We conducted a literature review and a small focus group with the partners of participants enrolled in a 5-day hybrid closed loop (HCL) clinical trial. Couples’ questionnaire ratings of diabetes-related distress and hypoglycemia concerns were described.Results: Partners play an integral and often helpful role in managing diabetes. They also report significant diabetes-related distress and fear of hypoglycemia, which have implications for relationships. Closed loop systems offer potential benefits such as hypoglycemia prevention and partners’ online access to glucose data (“remote monitoring”). However, disruptive alerts, technical glitches, maintenance tasks, device size, and other drawbacks may strain partners and relationships. A partner focus group elicited several novel themes. Partners gained valuable insights about T1D from remote monitoring and identified hypoglycemia prevention as a major benefit. For all partners, hypoglycemia worries decreased during system use. However, partners also cited vicarious frustrations with the system, concerns about remote monitoring disrupting couple communication, and needs for technology-specific partner education.Conclusion: Closed loop systems stand to affect partners and relationships. As researchers continue to design closed loop systems and devise their integration into standard clinical care, it will be vital to assess partner perspectives to increase satisfaction and success with this technology., diabetes, partners, closed loop, insulin, management

: Partnering with Science; Research scientists are exploring new physiological pathways and new therapeutics to regulate glucose in people living with type 2 diabetes. Studies have shown that fibroblast growth factor 21 (FGF-21) has the ability to regulate blood glucose levels; however, these effects are temporary. In another promising development, activation of the fibroblast growth factor receptor-1 (FGFR-1) using a specifically designed antibody has shown to be effective in regulating glucose and is capable of long residence times in the blood. Scientists are also exploring the role of FGF-1, another member of the FGF family, in fat remodeling and glucose regulation. It is possible that the regulation of blood glucose levels by FGF-1 might actually involve regulation of a neural pathway (as opposed to a systemic metabolic pathway). People living with diabetes can have hope that scientists are close to developing novel therapeutics to regulate glucose over an extended period of time., diabetes, fibroblast growth factor 21, FGF-21, glucose, regulation

: Reflections From a PLAID Newcomer; Note from the Editor: Danae is our newest member of the PLAID team, taking on the role of Production Editor. This is her first exposure to working full-time around people with diabetes, so I asked her to share her thoughts on what she has experienced so far. Her words share a valuable outside-looking-in perspective, and gives us, people living with diabetes, an opportunity to walk around in the shoes of someone who cares about us and wants to see us thrive., diabetes, support

: Talking Points; Sometimes words can hurt more than a needle prick. Since, on the outside, a person with diabetes (PWD) may look perfectly healthy, it’s easy to accidentally say something thoughtless and insensitive. Being on the outside looking in, those who make up a PWD’s support system – health care providers, coworkers, friends, family members, even partners – can find it difficult to talk about diabetes in a helpful way. After all, we don’t experience the ongoing daily management a person living with diabetes does.You want to let someone living with diabetes know that you are there for them without feeling as if you’re being too intrusive. Diabetes is a personal battle, and has very individualized characteristics for each person living with the disease. How do you offer help without overstepping bounds?To answer this question, we’ve compiled some tips on how to talk about diabetes with patients, friends, family, and coworkers. We also developed a resource on how to assist them in an emergency., diabetes, communication, support

: Uncertainty and the Duration of Disease in Adults with Type 1 Diabetes; Objective: The purpose of this study was to investigate the relationship between type 1 diabetes duration and uncertainty. According to the Reconceptualized Uncertainty in Illness Theory, it was hypothesized that longer duration would be associated with less uncertainty.Research Design and Method: A sample of 379 people with type 1 diabetes recruited from the T1D Exchange completed an online survey. The online survey measured disease duration, uncertainty, and demographic characteristics. Multiple variable linear regression was calculated to test for an association between diabetes duration (in years) and uncertainty in diabetes self-management. Post hoc one-way analysis of variance with Tukey’s HSD test was calculated to investigate uncertainty at five and ten-year disease duration intervals.Results: With adjustment for age, gender, and education, diabetes duration was negatively associated with uncertainty (b = -0.15, p= .03; 95% CI = -0.28, -0.01). Uncertainty was lowest among the 64 participants with a duration equal to or greater than 40 years (M=63.53, SD=15.04). In Tukey’s HSD post hoc test, the mean difference on the uncertainty scores for 5 to < 10 years diabetes duration (n=38, M=72.66, SD=14.51) and 40 or more years diabetes duration was significant (p = 0.02, 95% CI = 0.81, 17.44).Conclusions: Individuals with longer disease duration reported less uncertainty related to self-management, and uncertainty varied by duration interval. These findings provide preliminary information about where to place behavioral interventions designed to reduce uncertainty among individuals with type 1 diabetes., diabetes, uncertainty, management

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Partner Perspectives