This is the second article in a series on the impact of type 1 diabetes on pediatric patients and their parents and caregivers. Click here to read Part 1 of the series.
Parents of and caretakers of children with type 1 diabetes can often feel anxious, stressed, and overwhelmed with the daily care their children require. Endocrinology Advisor spoke with Cynthia E. Muñoz, PhD, MPH, a pediatric diabetes psychologist at Children’s Hospital, Los Angeles, and President of Health Care and Education for the American Diabetes Association.
What are the most common factors that contribute to psychological distress in parents of children with type 1 diabetes?
Dr Muñoz: The unknown. Type 1 diabetes (T1D) accounts for 5%-10% of all types of diagnosed diabetes. As such, it is common for a parent or guardian to have limited knowledge and many questions about this complex medical condition when their child is initially diagnosed.
Self-blame. Parents and guardians frequently ask if there was something they could have done to prevent their child’s T1D diagnosis. Despite their medical team’s efforts to reassure them that there is nothing they could have done to prevent T1D, it is not uncommon for parents and guardians to engage in self-blame. In some cultures, a common health belief associated with T1D is that a frightening or traumatic event (“susto”) caused the child’s medical condition.
Another common belief is that insulin is harmful. Parents and guardians may experience emotional distress when their medical provider recommends a medication (ie, insulin) that other trusted individuals in one’s community say can be harmful for their child.
Imagining the worst-case scenario. Out-of-range blood glucose (BG) levels can be distressful for both the child with T1D and their parents. While an out-of-range BG level may indicate that a prescribed medical response is necessary (such as consuming a source of simple sugar if the level is below range, or administering insulin if the level is above range), out-of-range levels can be distressful if associated with severe diabetes-related complications. Lower BG levels can also be distressful for people who are afraid of hypoglycemia (“fear of hypoglycemia”). It is important to view any BG level—whether it’s in-range or above/below range—as a number, a number that informs how one should respond. Discussing concerns with one’s diabetes care team is key. For some, having access to more comprehensive BG information through the use of a continuous glucose monitor (CGM) may be helpful.
Feelings of overwhelm. The management of T1D is complex and takes time and repetition to master. Diabetes education is typically provided over several hours. Parents’ and guardians’ complex feelings following their child’s new diagnosis may negatively impact their attention to and retention of information while receiving diabetes education. In turn, this may heighten feelings of overwhelm when it’s time for the parent or guardian to assume responsibility for their child’s T1D management. Over time, a parent/guardian may not achieve a feeling of mastery over their child’s T1D management given that BG levels are highly susceptible to change due to physical activity, stress, developmentally-normative changes in hormones, and more.
Do the contributors of psychological distress change throughout the child’s life or as the child and parents become more accustomed to management?
Dr Muñoz: Some parents and guardians may be more at-risk for psychological distress when their child is initially diagnosed with T1D during major life and developmental changes, such as a change in school or the beginning of adolescence. They may also be at risk when changes to a child’s diabetes management are made, such as a transition from multiple daily injections (MDI) to the use of diabetes technology, or discontinuation of a diabetes technology.
Does the psychological well-being of parents of children with T1D impact the parents’ health? How does it impact other facets of life and relationships?
Dr Muñoz: Yes, psychological well-being and overall health go hand in hand. An increase in stress and fears, anxiety, and depression can result in social isolation, feelings of loneliness, and the perception that “no one understands.” Elevated psychological challenges can also negatively impact one’s sleep, appetite, and overall health management.
What can be done to ensure psychological well-being of parents with T1D?
Dr Muñoz: Self-care and support are key. It is also important to maintain communication with your child’s diabetes care team.
Attending retreats, camps, and gatherings for T1D families or specifically for T1D parents and guardians can help. Meeting with, listening to, and talking with other T1D parents and guardians can help one feel understood. This can also be a wonderful opportunity to learn “tips and tricks” associated with T1D management and to build a lasting T1D support network. It is important for parents and guardians who attend T1D gatherings to keep in mind that each child’s T1D care is personalized; what works for one may not work for another.
Ensuring that appropriate diabetes management support at school is key, given the amount of time that many children with T1D spend at school. This can be accomplished by requesting diabetes-specific accommodations such as unrestricted access to the health team. These accommodations can be included in a 504 Plan or, for students who receive special education, added to their Individualized Education Plan (IEP).