Edited by Frank J. Snoek and T. Chas Skinner
Introduction to Diabetes in Children
The results of the Diabetes Control and Complications Trial1,2 focused the attention of the medical community on the importance of maintaining blood glucose levels as close to the normal range as possible in order to prevent or delay the devastating complications of diabetes.
However, translating this message to families coping with this disease in a child presents many challenges and requires a multi-disciplinary team to care for each family.3,4 Type 1 (insulin-dependent) diabetes is frequently singled out from many other chronic childhood diseases because its successful treatment demands much self-care and family responsibility for implementing a complex treatment regimen.5,6
When a child is diagnosed with diabetes, the critical tasks of decision-making concerning the child’s daily survival and treatment are transferred from health care professionals to the family. Immediately following diagnosis, the family is responsible for carefully balancing multiple daily insulin injections and food intake with physical activity in order to prevent large fluctuations in blood glucose levels, which can interfere with the child’s normal growth and development. Frequent blood glucose monitoring is also required to assess this tenuous balance between insulin, food, and activity.
In the psychosocial literature on pediatric diabetes, it is well documented that this complex daily regimen impacts on every aspect of the child’s development and family life.4,7,8 With respect to psychological development, ‘good emotional adjustment’ is strongly related to better glycemic control.7,9,10 Sufficient studies comparing groups of children with diabetes with non-diabetic comparison samples have been conducted using standardized, objective measures that we can confidently conclude that children with diabetes are not a psychologically ‘deviant’ group.9,11,12 However, such global studies have not provided much information about what it is about diabetes that affects the developing child and almost every aspect of family life.
Therefore, this chapter will focus on identifying and understanding the specific stresses of living with diabetes that the child and parent must confront at each developmental stage between infancy and the 11th year, and the coping responses that lead to healthy psychological and physical outcomes. Because each developmental stage presents different challenges, we will divide the discussion into (1) diabetes in infancy (0-2 years of age), (2) diabetes in toddlers and preschoolers (2-5 years) and (3) diabetes in the school-age child (6-11 years). For each section, we will briefly review the central milestones of normal psychological development and then examine how the treatment demands of diabetes impact on the developmental tasks of each period. Next, we will discuss how diabetes impacts on the family and vice versa. We will also translate research findings into brief recommendations for health care providers to assist in developing services that best meet the changing psychosocial needs of their pediatric patients with diabetes and their families in each of these developmental periods. The final section of the chapter will review some of the risk factors for poor adjustment and diabetes control that have been identified across the whole of childhood.
Psychological development and the impact of diabetes in infancy
Diabetes diagnosed during infancy has a profound effect on the parent-child relationship. For the first two years of life, the central psychological task is the establishment of a mutually strong and trusting emotional attachment between the infant and the primary caregivers.13,14 The infant’s psychological well-being depends on the predictable presence of an adult who meets the infant’s physical needs, provides a stable environment and responds to their social advances.
Because type 1 diabetes is relatively rare in infants and toddlers, and symptoms may vary from those commonly seen, young children with diabetes are often misdiagnosed initially.15 The child may present with acute vomiting and marked dehydration, which is often attributed to gastroenteritis. The diagnosis of type 1 diabetes in infants is often delayed because it is more difficult for parents to detect classic symptoms of diabetes, such as frequent urination, which would signal the need to seek medical attention. Due to such delays and misdiagnoses at diagnosis, infants and toddlers are more likely than older children to be in diabetic ketoacidosis (DKA) and require hospitalization in an intensive care unit. When hospitalized, infants endure disruptions of expected home routines and are often subjected to invasive medical procedures. Once home, the ‘trusted’ caregivers are required to give injections and perform painful fingersticks on infants who lack the cognitive ability to understand that the procedures are beneficial.16 Therefore, the diagnosis of diabetes may threaten the infant’s development of a trusting relationship with caregivers. In a qualitative study by Hatton and colleagues,17 mothers of infants and toddlers with diabetes reported feeling a diminished bond with their children and a loss of the ideal mother-child relationship.
Because young children with diabetes are totally dependent on their parents to manage their disease and to recognize dangerous fluctuations in blood glucose, parents must be constantly vigilant.18 Due to the stress of the day-to-day management of diabetes, many parents are too exhausted and fearful to leave their child in the care of another.17,18 In addition, finding ‘relief’ caregivers who are competent and comfortable caring for a young child with diabetes is often extremely difficult, if not impossible.3,4,18 Therefore, diabetes may put the infant-parent relationship at risk for overdependence and may restrict the positive separation and reunion experiences that are necessary during infancy. In a descriptive study by Sullivan-Bolyai, it was shown that diabetes might also put mothers at risk for physical and emotional problems, given this constant level of stress and responsibility without easily available support systems. This highlights the importance of helping parents identify support systems to reduce the stresses created by a diagnosis of type 1 diabetes.18
Family issues: caring for an infant with diabetes
When a child is diagnosed with IDDM during the first two years of life, the parent(s) or caregiver(s) become the real ‘patient’. The grief experienced by parents of infants after diagnosis is often stronger and more emotionally disruptive than when a child is diagnosed at an older age because parents of young infants have more recently celebrated the birth of a ‘healthy, perfect’ child. In addition, infants are more often critically ill at diagnosis, and the parents may have witnessed their child being cared for in an intensive care unit. This heightens the trauma already experienced by the parent(s), and emphasizes the vulnerability of their child as well as the seriousness of diabetes. After the acute crisis abates, the parents of a very small child are now faced with the reality and implications of the diagnosis. They may find it extremely difficult, both psychologically and physically, to inject insulin into or to take a drop of blood from their infant’s tiny body. Parents have described feeling ‘riveted to a totally inflexible regimen that ruled their very existence’17 (p. 572). Parents not only grieve for the loss of a ‘healthy’ child, but also for the loss of spontaneity, flexibility, and freedom to which they may have been accustomed. In order to ensure that the infant’s medical needs are constantly monitored, major lifestyle changes are frequently required.17
For all of these reasons, the diagnosis of IDDM during infancy is emotionally devastating and extremely stressful to parents. Many parents report that the diagnosis of diabetes increased strain in their marriages and heightened miscommunication between spouses, as well as leading to feelings of depression.17 However, with time and knowledge, parents in the studies by Hatton et al. and Sullivan-Bolyai et al. felt greater confidence and found more flexibility in the management regimen, which contributed to adaptation.17,18 Even as they felt more adapted, the many stresses of diabetes continued to evoke emotional responses.17
- Rubin RR, Peyrot M. Was Willis right? Thoughts on the association of depression and diabetes. Diabetes Metabo Res Rev 2002; 18: 173–175
- Polonsky WH, Anderson Bj, Lohrer PA et al. Assessment of diabetes-related distress. Diabetes Care 1995; 18: 754–760
- Egede LE, Zheng D. Independent factors associated with major depressive disorder in a national sample. Diabetes Care 2003; 26: 104–111.
- Kessler RC, Berglund P, Demler O et al. The epidemiology of major depressive disorder: results from the National Comorbidity Replication (NCS-R). JAMA 2003; 289: 3095–3105.
- Ciechanowski PS, Katon WJ, Russo JE. Depression and diabetes: impact of depressive symptoms on adherence, function, and costs. Arch Intern Med 2000; 160: 3278–3285.
- Lustman PJ, Anderson RJ, Freedland KE et al. Depression and poor glycemic control: a meta-analytic review of the literature. Diabetes Care 2000; 23: 934–942.
- de Groot M, Anderson R, Freedland KE, Clouse RE, Lustman PJ. Association of depression and diabetes complications: a meta-analysis. Psychosom Med 2001; 63: 619–630.
- Rosenthal MJ, Fajardo M, Gilmore S, Morley JE, Naliboff BD. Hospitalization and mortality of diabetes in older adults. A 3-year prospective study. Diabetes Care 1998, 21: 231–235.
- Clouse RE, Lustman PJ, Freedland KE et al. Depression and coronary heart disease in women with diabetes. Psychosom Med 2003; 65: 376–383.
- Egede LE, Zheng D, Simpson K. Comorbid depression is associated with increased healthcare use and expenditures in individuals with diabetes. Diabetes Care 2002; 25: 464–470.
- Peyrot M, Rubin R, Siminerio L. Physician and nurse use of psychosocial strategies and referrals in diabetes. Diabetes 2002; 51 (Suppl. 2): A446.
- Welch GW, Jacobson AM, Polonsky WH. The Problem Areas in Diabetes Scale: an evaluation of its clinical utility. Diabetes Care 1997; 20: 760–766.
- Piette JD, Heisler M, Wagner TH. Problems paying out-of-pocket medication costs among older adults with diabetes. Diabetes Care 2004; 27: 384–391.
- Lin EH, Katon W, Vo Korff M et al. Relationship of depression and diabetes self-care, medication adherence, and preventive care. Diabetes Care 2004; 27: 2154–2160.
- Sommerfield AJ, Deary IJ, Frier BM. Acute hyperglycemia alters mood state and impairs cognitive performance in people with type 2 diabetes. Diabetes Care 2004; 27: 2335–2340.
- Cox D, Gonder-Frederick L, McCall A et al. The effects of glucose fluctuation on cognitive function and quality of life: the functional costs of hypoglycaemia among adults with type 1 or type 2 diabetes. Int J Clin Pract 2002; 129: 20–26.
- Van der Does FE, De Neeling JN, Snoek FJ et al. Symptoms and well-being in relation to glycemic control in type II diabetes. Diabetes Care 1996; 19: 204–210.
- Lau C, Qureshi AK, Scott SG. Association between glycaemic control and quality of life in diabetes mellitus. J Postgrad Med 2004; 50: 189–194.
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Copyright © 2005 by John Wiley & Sons, Ltd.