Having type 1 diabetes is more than just having a disease. It also stretches to social context and how these factors can affect individual health and a patient’s ability to deal with the stress. Social determinants and factors affecting an individual or family’s ability to deal with life stress such as having a child with diabetes include poverty, housing, income, neighborhood, education, and family. All of these factors continuously test a patient’s (or caregiver’s) bandwidth and coping skills, which can affect the management of diabetes. Life stresses can manifest in several ways. For children with type 1 diabetes especially, it may manifest as missing insulin doses or skipping visits with an endocrinologist. Having a sense of the patient or caregiver’s bandwidth and coping skills is important to be able to provide relatable and applicable suggestions for diabetes management.
Receiving a type 1 diabetes diagnosis is very traumatic and scary. Often this diagnosis may occur in the hospital or even in the intensive care unit as a result of an episode, with the child and the family starting to realize life will be different than before. The news of daily injections is frightful to any child and an episode of vomiting-induced hypoglycemia is enough to send any parent into a frenzy to get their child to the hospital as quickly as possible.
Meeting with a psychologist, psychiatrist, or counselor is often a new experience for a child. It allows him or her to cope with the news and “new diabetes life” he or she must now learn to manage. The meetings may culminate into a strong feeling of “something is wrong with me” that may continue to erode a patient’s psychological well-being. Patients must acknowledge the “new normal” daily life and it is important to not trivialize the day-to-day and hour-to-hour changes in a family’s life.
While a case of new onset diabetes is familiar to physicians and hospitals, it is anything but familiar to that child and family and it comes with a fear of “something else” being wrong. Naturally, the stress levels of the child and caregiver greatly increase during the first year of diagnosis and are unrelated to diabetes outcomes.
Being tuned into all the patients in the room—the child, parents, grandparents, siblings—is essential, especially early on in a diagnosis. As diabetes affects other people beside the child, the social and family context is important. A review of family dynamics is important as are peer relationships and the capability/ability of different family member to complete obligations related to caregiving. Families must work together, be supportive, and provide a safe feeling for the child struggling with his or her new diagnosis.
The psychological maturity of a child is also important, as some 8-year-olds are quite capable of delivering insulin while paradoxically some older teenage children may have less inclination to pay attention or care about their insulin injections. Additional family stressors must also be considered such as if a mother is pregnant, parents are divorcing, child is suicidal, etc. These and other factors must be explored to encourage the “team environment” necessary for a family to survive a diabetes diagnosis.
Many times, one or more family members may feel guilty about the diagnosis. Acknowledgment that “no one did anything wrong” is important as families need to realize there was nothing that could have prevented type 1 diabetes and that no one is at fault for the diagnosis.
Reminding children that they are still the same child as they were before the diagnosis is important as well. Even though their health circumstances have changed dramatically, they should continue to explore their self-identity and continue living as the person they still are.
Adjustment to living with diabetes takes time. It is not something that will occur overnight and that is something that should be instilled in children early on. While glucose and HbA1c numbers are important, discussions with patients need to focus more about other aspects and not simply the numbers. Excess focus on lab values will instill importance and fear in patients about getting adequate numbers, which may lead to falsification of glucose logs to please an endocrinologist.
Experienced families should be strongly encouraged to meet with other children and families that have a family member newly diagnosed with type 1 diabetes. This allows for discussion, peer mentorship, and a sounding board for others with diabetes.
Rather than adjusting insulin doses, asking patients to try harder, or enforcing rules during visits, the focus should be on identifying the social barriers and addressing them. Treating a situation is sometimes more effective than treating the person so that progress and better outcomes can be made.
Present disclosure: The presenter reported that he has no conflicts of interest.
Written by: Debbie Anderson, PhD
Reviewed by: Marco Gallo, MD