Living With Type 1 Diabetes: Family Member Challenges
Living with an adult who has type 1 diabetes affects each of the other family members in different ways.
To better understand these effects, some researchers in Finland gathered and analyzed family members’ accounts of everyday life when one adult member has type 1 diabetes.
The study generated six concerns that members of different families expressed about of living with someone whose life depends on good glucose management.
The Six Family Member Concerns
Hypoglycemia: Always On My Mind. Many family members reported that the risk and danger of hypoglycemia are continuously on their mind. They manage their fear of low blood sugar episodes by doing all they can to prevent it: always carrying a source of quick carbs, keeping carb sources stashed around the house, and learning to recognize hypoglycemia’s early warning signs.
Acquainted Bit by Bit. Family members generally acquired information about diabetes little by little, primarily from the person who has diabetes—and a variety of other scattered sources. Only a few of the study participants received diabetes education from a clinic, or hospital.
Over many years, a few family members accumulated a wealth of tacit diabetes knowledge, and began giving their family member’s diabetes less and less thought. They reported coming to think of diabetes as a fact of their family member’s life instead of an illness.
Diabetes Management: Involved. Some family members are active participants in managing the diabetes. A few become the “reminder” person (remember to eat, exercise, or take your insulin), some help with supplies and equipment, others with monitoring and insulin injections. Family members may also participate in the diabetes diet, and/or exercise regimen.
Diabetes Management: From the Sidelines. While some family members are directly involved, other see themselves as external to the management of diabetes. They may watch admiringly from the sidelines as a responsible spouse self-manages their glucose, or they may find the diabetes regimens unpleasant and prefer to see and participate as little as possible.
Bearable Burden. Family members generally find diabetes restricting and burdensome, something always on their mind, and affecting everything they do. Because everyday life is necessarily more scheduled there is a perceived loss of spontaneity.
However, despite wanting to be free from the regimen diabetes imposes, family members also reported their lives seemed “quite usual” in most respects, and felt it was possible for them to do the things they wanted to.
Emotional Roller-Coaster. Though some days family members have confidence in the efficacy of diabetes treatment guidelines, there are many present and future worries generated by type 1 diabetes. The most prevalent fears that family members expressed were about:
- Long-term complications.
- Mistakes or forgetfulness in diabetes self-management.
- Worry about equipment failure (especially insulin pumps).
- Their own readiness to manage an emergency situation.
Some family members were also uncertain how to interpret the mood of a person with diabetes—whether a mood is caused by changes in blood sugar level, or something else.
The Wholeness of Diabetes Management
“It is important to remember that adult people with type 1 diabetes do not live in a vacuum. Many of them have family members who are important to...the wholeness of diabetes management. These [study] findings are valuable for developing...the best approaches to support adult people with diabetes and their families in meeting the challenges of living with diabetes,” concluded the study’s authors.