Corinne Jackman and Dr. Barbara Mandleco, Nursing
The purposes of this research are to 1) discover perceptions children/adolescents with diabetes have about their lives/illness and 2) develop appropriate interventions based on these perceptions. A number of youth diagnosed with type 1 diabetes face difficult challenges concerning their care and causing great stress on their family. Asking youth about their perceptions of living with type 1 diabetes can be useful in developing interventions that are exactly what the youth need/desire as they cope with their chronic illness. Hopefully, adjustment to the illness will be smoother and the family unit helped as the needed interventions are provided.
Participating families were recruited through the Utah Diabetes Association and Utah Valley Regional Medical Center. Focus groups were organized for each member of the family: parent, child, and sibling. Individual interviews were also conducted depending on participant preference and schedule. During the focus group we asked the children with diabetes (CWD) what it means to have diabetes, how diabetes has affected their family, what types of challenges they experience with parents, siblings, extended family, peers, school, etc., what kinds of information they would find useful and what is the best way for the information to be provided. Participants also filled out a demographic questionnaire.
Audio recordings of the focus groups and interviews were transcribed verbatim and entered into N-Vivo (a qualitative data management program). Two coders individually coded all interviews and then discussed the differences between them until a consensus was reached. The coders found major themes and then modified those themes to create subcategories and collapsed themes. Exemplars of the themes and categories were identified as well. A separate researcher reviewed the themes and quotations to ensure their clarity. Major themes found were: child’s emotions and attitudes, community frustration/support, diagnosis, doctors and hospitals frustration/support, extended family frustration/support/neutral, friends with/without diabetes, interventions, lifestyle changes, other illness and side effects, and what the child has learned.
Findings indicated the CWD had differing attitudes towards diabetes. When comparing other illnesses the children had to diabetes some children would rather get rid of their autism and ADHD or Perthes disease rather than their diabetes. One child would rather have Down syndrome than diabetes. Other CWD viewed diabetes as something that made them special. Checking blood sugar and receiving shots were commonly brought up as challenges. They mentioned the physical pain of checking and shots as well as the frustration of having to do it so often. The CWD expressed frustration with the lifestyle changes concerning food. Some CWD had difficulty counting the carbohydrates they ate and knowing the amount of insulin they should receive. Many expressed frustration with having siblings and friends that could freely indulge in high sugar foods while the CWD had to resist or take extra time to get insulin for the food. Eating food without receiving a bolus of insulin for it, commonly called cheating, was practiced by some of the CWD to avoid this frustration. Some CWD expressed frustration with getting interrupted during recess because of a low blood sugar or the need to check their blood sugar. Having friends who knew about diabetes was a positive aspect mentioned during the interviews. However, many CWD did not have friends that knew about diabetes before knowing the CWD. The CWD talked of friends who did not understand diabetes and consequently treated the CWD differently. To avoid this it was common for the CWD to have a teacher or parent teach the class about diabetes at the beginning of each year. The majority of the CWD said knowing someone with diabetes had a positive effect on them. A family member, relative, or adult were helpful, however, knowing another child with diabetes was the most helpful.
From the analysis of the focus groups, recommendations can be made related to interventions. CWD would benefit from being part of a group composed of CWD or having a peer who also has diabetes partnered with them for support. Parents can also be made aware of common frustrations CWD have, such as needing to check blood sugar and bolus for every snack and having friends who do not fully understand what diabetes is. If a parent is aware that the child may feel this way they can attempt to avoid these frustrations as well as help the child cope.
More research is needed concerning CWD and their needs. It would be interesting to conduct more focus groups and interviews of a larger and more diverse population of CWD. This would create more universal themes and consequently universal recommendations. With a larger population one may also be able to subdivide the needs according to age, gender, and other factors. It is also necessary now to study the effectiveness of the found recommendations by implementing and evaluating them. Doing so would implement the findings into practice and possibly allow this research to change the lives of CWD for the better.