Janelle M. Neu and Donna Freeborn, Graduate Nursing
Introduction
According to the Center for Disease Control and Prevention (CDC) more than 13,000 young people are diagnosed with type 1 diabetes (CDC, 2008b). This autoimmune disease destroys the pancreatic cells that create insulin, a necessary hormone for carbohydrate metabolism. This disease affects every aspect of not only the child’s life, but also of the child’s parents and family (Moreira, H., Frontini, R., Bullinger, M. & Canavarro, M.C., 2013). When a child is diagnosed with type 1 diabetes, parents, alongside their child, must acquire a new repertoire of skills. Parents must become professionals at anticipating their child’s appetite and activity each day. They also must learn how to combat hyperglycemia and dangerous hypoglycemia when their child is ill. In addition, anecdotal evidence suggests parents may fight each day attempting to get their child to take on more responsibility for their own care. Many parents may also mention intense fear that the result of one poor choice on their part will forever scar their child with diabetes. Research shows that parents of children with type 1 diabetes experience significant stress leading to depression. While these symptoms are more significant at diagnosis, they are still present 1-4 years after the initial diagnosis (Whittemore, Jaser, Chao, Jang, & Gray, 2012). One study on the effect of support groups for children with type 1 diabetes and their parents, identified four main themes of interest; finding straight answers, making transitions, struggling with parenting, and connecting with others (Holtslander, Kornder, Letourneau, Turner, & Paterson, 2010). Many families with a child with type 1 diabetes face challenges that fall into these categories and would benefit from an organization that pools the professional and anecdotal guidance in one place. The purpose of this mixed qualitative and quantitative project is to determine if a monthly psychosocial support workshop affects the perception of diabetic control, parent-child relationship, and overall perception of parental stress of parents of type 1 diabetic children.
Methodology
After obtaining IRB approval and participant consent, research team members used open-ended questions asking parents to describe their perception of diabetic control, their relationship with the diabetic child, and their overall perception of stress as well as indicate the number of workshops attended. Workshops were held monthly for 9 months for parents of children with type 1 diabetes. Workshops were facilitated by research assistants with topics for discussion each month, including topics suggested by participants. Responses were analyzed to determine if the responses moved toward a more positive perception, a more negative perception, or a stagnating perception. The ultimate goal was to raise awareness of the availability and benefit of participation in psychosocial support workshops for children with type 1 diabetes and their parents. This awareness may encourage families with type 1 diabetes to form their own support workshops and seek funding for these workshops and bring together professional and anecdotal experience in living with children with type 1 diabetes.
Results
At the end of nine workshops of 72.7% of responders attending two workshops were satisfied with the level of control, 54% reported close relationships with their diabetic child, and the parental perception of stress did not change.83% of respondents attending six or more workshops reported satisfaction with control, 83% were satisfied with the level of control, and the parental perception of stress did not change.
Discussion
This study showed that monthly workshops for parents with children diagnosed with type 1 diabetes have an increase in perception of disease control and quality of parent-child relationship but no change in perception of parental stress when two or more workshops were attended. When correlated with number of workshops attended, perception of disease control and quality of parent-child increased as number of workshops attended increased.
Parents with children who have a chronic illness also suffer from the new diagnosis. There is a lot of change and adaptation that is necessary. While much focus and research has been spent on treatment and the needs of the diagnosed child, little has been done to help the parents who continue to worry even after the children leave home.
Areas for further research and improvement would include inviting other health professionals such as nutritionists, dieticians, stress management professionals, etc. to participate and present information to parents. In addition, larger sample sizes and clearer questions would result in clearer information.
Conclusion
The number of diagnoses of type 1 diabetes is increasing and while there has been significant progress in treatment and even a possible cure on the horizon, the psychosocial effects of disease management on parents is immense. While we wait for a cure, we need to maintain the function and opportunity of these parents. We need to continue to question and find new ways of supporting parents of children with type 1 diabetes to prevent the health and relationship consequences that result from chronic stress.
References
Centers for Disease Control (CDC) (2013b). Diabetes projects. Retrieved October 6, 2013 from http://www.cdc.gov/diabetes/projects/cda2.htm.
Holtslander, L., Kornder, N., Letourneau, N., Turner, H., & Paterson, B. (2012). Finding straight answers: identifying the needs of parents and service providers of adolescents with type 1 diabetes to aid in the creation of an online support intervention. Journal of Clinical Nursing, 21, 2419-2428. doi: 10.1111/j.1365-2702.2012.04182.x
Moreira, H., Frontini, R., Bullinger, M., & Canavarro, M. C. (2013, September 9). Caring for a Child With Type 1 Diabetes: Links Between Family Cohesion, Perceived Impact, and Parental Adjustment. Journal of Family Psychology. Advance online publication. doi: 10.1037/a0034198
Whittemore, R., Jaser, S., Chao, A., Jang, M., & Grey, M. (2012). Psychological experience of parents of children with type 1 diabetes: a systematic mixed-studies review. The Diabetes Educator, 38, 562-569. doi: 10.1177/0145721712445216