Melissa Scollan-Koliopoulos, EdD, APRN, assistant professor, UMDNJ - School of Nursing
Uncovering a Multigenerational Legacy of Diabetes
ith the epidemic of type 2 diabetes and the increasing prevalence of this hereditary disorder within families, the phenomenon of a multigenerational legacy of diabetes warrants attention by clinicians. It is possible that patients with a legacy of diabetes may follow different heuristics to arrive at self-care decisions that are based on their memories of family members who experienced life with diabetes. A program of research is underway at the UMDNJ-School of Nursing (SN) that focuses on the substance and cotext of recollections of family members’ experiences with diabetes and the ways in which this may shape a legacy of diabetes, self-care behavior, and ultimately treatment outcomes.
Type 2 diabetes has become epidemic in America and runs in families. Within some households there is a multigenerational occurrence of diabetes and/or pre-diabetes (otherwise known as impaired glucose homeostasis or glucose intolerance). Formerly known as adult onset diabetes, the syndrome of impaired glucose metabolism now affects children in addition to adults, according to the American Diabetes Association. During my 15 years as a diabetes educator, I have recognized something unique about my patients with a family history of diabetes, a phenomenon I call a multigenerational legacy of diabetes. Patients with such a family history seem to link what they remember about a family member’s experiences with diabetes to their own anticipated or actual illness course. Anecdotally, patients with a family history of diabetes seem to respond differently to educational interventions than those who do not have this legacy. Consistent with the funding priorities of the National Institutes of Health, a program of research on decision-making in chronic illness is being initiated at SN. I am studying the ways in which a multigenerational legacy of diabetes influences self-care decision- making processes on a day-to-day basis.
With estimates that up to 80% of patients may not be caring for themselves optimally, it makes sense that now more than ever there is a need for diabetes self-management education. But what if those with a legacy of diabetes follow a different set of heuristic rules and short cuts—heuristics that are more emotion-driven, thus less rational, when compared to those who have no memories of a family member’s experiences with diabetes? Do the frequency, vividness, and intrusiveness (undesirable) of recollections drive heuristic procedures for decision-making and behavior choices by those with diabetes over and above the transfer of knowledge delivered in self-management education programs? Are some behavioral choices driven by intuition that originates in learned behavior from role modeling based on a prior generation with diabetes? How does a clinician go about extinguishing memories or decision-making rules that drive sub-optimal self-care behavior?
I have shown in a sample of individuals, recruited from two diabetes self-management education centers in the metropolitan New York/New Jersey area, that 100% of participants with type 2 diabetes and a family history of diabetes had a family member they remembered well enough to answer survey questions about. Memories included the family member’s illness representation (causes, timeline, identity, controllability, and consequences) of diabetes, physical complications of diabetes, and the ways in which the family member cared for his/her diabetes. It is possible that the combination of memories may interact to influence behavioral choices or heuristics used for self-care decision-making. There is empirical evidence that the recollections of a family member’s controllability and social consequences of diabetes are related to a patient’s own perceptions of the controllability and social consequences of diabetes. I also found that social consequences of diabetes, such as stigma and disclosure of diabetes, are associated with pill and insulin adherence. Other findings to date include that dietary behaviors are related to those of family members. I presented results at the 2006 conference of the Society for Behavioral Medicine that showed one’s perception of the timeline and identity (understanding of diabetes) is related to what is remembered about a family member’s perception of timeline and identity and to whether or not one follows a diet. Currently, I am conducting data analyses to establish whether emotional representations, risk perception, and fear influence foot self-care behavior in a small sample of individuals who have a family history of amputations related to diabetes.
The possibility exists that there are several prototype legacies comprised of responses to memories of family members’ diabetes-related experiences that are antecedents of the development of heuristics that guide decision-making procedures. Examples include emotional reactions (anger, frustration, fear), defense mechanisms (denial, reaction formation), automatic behaviors (first impressions and habits), ambivalence (certainty and uncertainty) regarding risk versus benefit, and/or intrusive thoughts (unsolicited recollections). A taxonomy of the different types of legacies of diabetes is needed to help guide clinicians as they design self-care interventions efficiently and effectively.
If Malcolm Knowles’ theory on adult learning is correct, then the phenomena that I observed in the clinic warrant further attention. Patients with a legacy of diabetes should theoretically be different from those with no family history of diabetes. After all, the patients with a family history of diabetes have experience with the illness. And, more importantly, they know what to expect. They know the disease course. For some, this may not include the expectation that complications can be prevented. Educational interventions need to account for the variance in behavioral outcomes posed by a legacy of diabetes.
In an attempt to refine the practice-based theory of multigenerational legacies of diabetes, more studies are proposed. Currently, a study is beginning that will recruit 300 participants who have a new diagnosis of diabetes and who may need insulin. Participants will be asked to answer surveys designed to measure the frequency, vividness, and intrusiveness of memories of family members who had diabetes, and which look at decisional conflict relevant to the initiation of insulin. Another study proposal has been submitted to the National Institutes of Health to examine the context and substance of memories of diabetes using ecologic momentary assessment to measure real-time decision-making procedures. I hope to establish within five years what interventions may effectively move patients with a multigenerational legacy of diabetes toward optimal self-care behavior.
Dr. Melissa Scollan-Koliopoulos is an assistant professor in the UMDNJ-School of Nursing. She earned her doctorate in nursing and health behavior at Teachers College, Columbia University, and is certified as a diabetes educator, diabetes management nurse practitioner, family nurse practitioner, and a community health clinical nurse specialist.