Parents’ Perceptions of Factors That Affect Successful Diabetes Management for Their Children
One of the greatest challenges of chronic illness is for parents and children to remain clear that the illness defines only a small part of the child. It must remain a priority for the child to meet all age-appropriate developmental tasks. Precisely because the office visit is designed to focus on the disease, it may serve as a particularly salient time to remind the family that the disease is only a small part of the child’s life.
Through several items, parents relate their concerns about the emotional and mental health of their children. First, parents indicate the importance of a child having a positive attitude and still feeling accepted even though they have diabetes. This merits direct discussion between children and their clinician on a routine basis. Health professionals can equip children with the skills to explain their illness to other children. Because children often tease about what they do not understand, children who are able to explain their illness to peers may eliminate the mystery and, perhaps, a source of isolation. The parents also stated that whether the child can cope with the stress and sadness associated with diabetes makes a significant difference to whether the child will ‘live well’ with the illness. Children with chronic disease are at greater risk for anxiety or depression that may merit referral to a mental health professional.35–37 To be most helpful, diabetes clinicians need to incorporate consistently into their care a biopsychosocial approach and have an appropriate referral network for when greater emotional needs arise.
Although availability of support groups for children was considered important enough to be included among the survey items, it was generally rated low. However, 8% of parents thought that it would make an extreme difference. This suggests that clinicians should ask individual families whether they think that a support group might be helpful. Additional research is warranted to explore for whom support groups would be most beneficial.
There is a wide body of research that addresses the special challenges that adolescents with diabetes face.13,38–40 During a time when young people are trying to fulfill the normal task of achieving independence, they must deal with parents who are worried that they will be incapable of caring for themselves and suffer dire consequences as a result. Furthermore, so much energy during adolescence is devoted to fitting in, to being “normal.” In direct opposition to normalcy, they have to attend to their diabetes several times a day, each time reminding them of their difference. With this in mind, it is not surprising that adherence declines during adolescence.30,41
Hanna and Guthrie12 found that parental involvement in diabetes management decreased from early to middle to late adolescence. Anderson and colleagues42,43 reported that children and adolescents whose parents were more involved in diabetes management tested blood sugar more frequently and were in better glycemic control. The parents in our study reported wanting a diabetes team that “knows how to deal with a child’s emotions and attitudes when he/she is a teenager” and that could help to prepare their child to take more responsibility for diabetes care as he or she gets older. Parent interviewees believed that professionals might be better positioned to teach adolescents, precisely because adolescents are seeking independence from their parents.