The global burden of diabetes is high and the prevalence of diabetes is increasing. Diabetes is a major disease with significant side effects and complications resulting in shorter lifespans. The problem is greater with type 1 diabetes because this type of diabetes cannot be prevented and there is no cure for the disease. However, clinical studies have shown that education, adapting to the disease, and nutritional therapy can reduce the complications of type 1 diabetes. Parents are the most important members of the diabetes management team in pediatric patients and any impact on the quality of life of the parent affects the quality of care of the diabetic child.
Diabetes Mellitus
The global burden of diabetes is significant. The World Health organization (WHO) estimates that 346 million people have diabetes worldwide, with a mortality rate of 10% recorded for 2004 (WHO, 2011). However, there are wide variations in the prevalence and mortality rate of diabetes among countries. Over 80% of all deaths from the complications of diabetes occur in underdeveloped and transitioning countries and this rate is projected to double by 2030 (WHO, 2011). The countries with the largest number of people with diabetes are India (50.8 million), China (43.2 million), and the United States (26.8 million). In contrast, Australia had 700,000 people diagnosed with diabetes in 2004-2005 (WHO, 2011). However, although the prevalence of diabetes in Australia is not as high as in other countries, diabetes represents a great burden to the healthcare system of Australia, especially in the treatment of indigenous people, where the death rate has be shown to be as high as 12 times that in the non-indigenous diabetic population (AIHW, 2008). In addition, the death rate from renal complications in indigenous people was found to be 19 times higher than in the general diabetic population, and deaths from other complications such as coronary heart disease, stroke, peripheral artery disease, and ulcers in the lower extremities were 7% higher (AIHW, 2008). There are also race and ethnic differences in the prevalence of diabetes in the US, ranging from 7.1% for non-Hispanic whites, t 11.8% for Hispanics, and 12.6% for non-Hispanic blacks (WHO, 2011).
Causes, Rate, and Risk Factors of Diabetes
During the process of digestion food is broken down into glucose, simple sugar. Glucose is then removed from the blood by insulin, a hormone made by the pancreas, and taken into the cells. Hyperglycemia, or high blood sugar levels, occurs when the pancreas cannot produce enough insulin to remove glucose from the blood or because the cells are not able to use the insulin (Centers for Disease Control (CDC), 2011). People with hyperglycemia can develop serious medical conditions should the disease progresses without medication (CDC, 2011).
There are different types of diabetes, which are classified according to their causes and risk factors. Type 1 diabetes is a chronic condition where the pancreas cannot make insulin to remove glucose from the blood and the patient develops hyperglycemia. With type 2 diabetes, the pancreas is either not making enough insulin or the cells lack the ability to use insulin.
Type 1diabetes, or diabetes mellitus, used to be referred to as child onset diabetes since the majority of patients diagnosed with type 1 diabetes were children and adolescents, although people can develop type 1 diabetes at any age (A.D.A.M.). The global incidence of childhood type 1 diabetes mellitus (T1DM) is increasing; although, as in all other forms of diabetes, there are wide variations among the different countries (Taplin et al., 2005). Some attribute the increase to environmental factors while others attribute it to genetic factors. The high-risk human leukocyte antigen (HLA) class II DRB1 gene has been shown to be commonly expressed in people with type 1 diabetes. However, a study by Fourlanos et al. (2008) has shown that the impact of the environment on lower-risk HLA class II genes can raise the incidence of type 1 diabetes in children who previously would not have developed type 1 diabetes. Another study found a correlation between maternal history of Type 1 and Type2 diabetes and later onset of Type 1 diabetes (Holstein et al., 2012). The study also found that people with type 1 diabetes have lower fertility rates.
Standards of Care for Children and Adolescents with Type 1 Diabetes
There is no known cause and no cure for Type 1 diabetes but the disease can be managed with diet, regular exercise, maintaining a normal body weight, and medication (CDC, 2011). Type 1 diabetes is diagnosed when a patient presents with a history of symptoms of diabetes, such as excessive urination, thirst and hunger, weight loss, and when laboratory tests confirm hyperglycemia, glycosuria, ketonemia, and ketonuria (Silverstein, 2005). In the absence of these symptoms, hyperglycemia alone does not indicate diabetes; however, when a patient who is otherwise healthy presents with high blood sugar levels, other tests are generally conducted to confirm or rule out diabetes. One of these tests is the hemoglobin A1C blood test; when this test shows levels higher than 6.5%, that means that the patient has diabetes. Another test is the oral glucose tolerance test; diabetes is confirmed if sugar levels are greater than 200 mg/dL after 2 hours. Type 1 diabetes is diagnosed in 10%–15% of people with diabetes and a great majority of these patients are children or adolescents.
Short-term Care
The first step in the management of child or adolescent diabetes is to have the patient evaluated by a multidisciplinary team consisting of a pediatric endocrinologist, nurse educator, nutritionist, and psychologist (Silverstein et al., 2005). As the child advances through the various stages of childhood and adolescence the team has to make adjustments to the treatment protocol to correspond with developmental changes. Around 30% of children with type 1 diabetes suffer from diabetic ketoacidosis (DKA), a life-threatening condition that needs immediate attention.
Medication is a critical component in the management of type 1 diabetes as the body cannot produce any insulin. There is also a strong educational component in the control his disease; therefore, a critical first step in the care of diabetes is patient education (Silverstein et al., 2005). This is particularly important as there is no cure for the disease and self-management is at the core of treatment. Parents with diabetic children must adapt and learn the skills necessary to help their children live with the disease and as they learn these skills they must also pass this knowledge on to their children (Holstein et al., 2012).
Long-term Care
Type 2 diabetes can be prevented through proper nutrition and regular exercise; however, there is no way to prevent or cure type 1 diabetes (A.D.A.M., CDC, 2011). Patients with either form of diabetes should wear an identification bracelet that identifies the wearer as a person with diabetes. This is especially true for school-age pediatric patients who are often away from their parents. The ability of children to manage diabetes on their own varies according to their motor development, cognitive ability, and maturity and increases with time. Parenting of children with type 1 diabetes can be stressful because the disease has to be monitored closely to ensure metabolic control and to prevent drops in blood-sugar levels. This is especially true in the oversight of infants who have no way of communicating or responding to the danger signals of the disease (Grey et al., 2011). Therefore, it follows that parents of children diagnosed with diabetes carry a large burden of care that often leads chronic stress and depression; and unfortunately, there are few interventions available to help parents cope with the challenges of caring for a diabetic child. It is critical to address this issue because the ability to cope with the stress of treating diabetes in a child can impact the management of the disease as well as the wellbeing of the entire family unit; and the ability to teach the child, when mature enough, to self-manage the disease. Studies have shown that parental depression correlates with poor metabolic control and low quality of life (QOL) of parent and child (Grey et al, 2011). One way to ameliorate this problem is to adopt a flexible and intensive approach to the management of insulin that would not only improve metabolic control but also result in dietary freedom. This approach has been made possible by the advent of new medications in the form of insulin analogues, although their use requires personalized and extensive parental education. As the child matures and the parent adjusts to the disease the diabetes care management team should develop a plan that meets the needs, hopes, and lifestyle of the young patient and the parents.
Diabetes is a serious disease that reduces QOL and has serious complications.
More than half of the patients diagnosed with diabetes suffer from other disabilities and 25% of these disabilities were a direct cause of diabetes (AIHW, 2008). Diseases associated with diabetes include diseases of the kidney, various cardiovascular and neurological diseases, eye problems, and stroke (A.D.A.M.). Cardiovascular disease and stroke account for half the mortality rate of people with diabetes. Impaired circulation and neuropathy in the lower limbs raise the risk of foot ulcers that sometimes lead to limb amputation. Poor circulation can lead to damage of the small blood vessels feeding the retina and diabetic retinopathy, which may eventually lead to blindness in 2%, and severe visual defects in 10%, of people with diabetes. There is also significant correlation between diabetes and renal failure and 10-20% of people with diabetes die due to kidney complications. Neurological damage is also common among people with diabetes and this can lead to pain and loss of sensation and function in the hands and feet. Finally, the overall risk of mortality among diabetics is over twice that of people in the general population.
Endothelial function plays a critical role in the progression of diabetes and is not just limited to the anatomy of the blood vessels but also involves their function. The blood vessels are responsible for the delivery of inflammatory cells and cytokines, and other regulatory substances to the various cells; thus, impaired anatomy translates into impaired function and vascular disease (Gallego, Wiltshire & Donaghue, 2007). Endothelial dysfunction leads to microalbuminuria, which signals the beginning of diabetic nephropathy. There are many factors that lead to impaired endothelia function in patients with type 1diabetes including high blood-sugar levels, low insulin levels, and elevated LDL cholesterol levels. High blood-sugar levels acts either directly, or indirectly via the activation of regulatory pathways, to compromise the function of blood vessels; while insulin can act directly by increasing the blood flow (Gallego, Wiltshire & Donaghue, 2007).
Therefore, since endothelial dysfunction precedes diabetes-induced complications, it is critical to assess endothelial function even when there is no evidence of any such complications. The factors affecting endothelial function vary for young and older adults. In younger adults there is a correlation between LDL cholesterol levels and endothelial dysfunction, whereas in older adults the correlation is between microalbuminuria and flow-mediated dilatation (FMD). Once the factor that is causing impaired endothelial function has been isolated, the issue may be addressed with therapy; for example, FMD can be treated with nutritional supplements like folate of vitamin B6, LDL cholesterol can be controlled with statins, and high blood-sugar levels can be managed with insulin.
There is scientific evidence that control of modifiable risk factors such as blood sugar levels, cholesterol levels and blood pressure can lower the risk of complications due to diabetes. Proper nutrition can help control hyperglycemia, lower cholesterol and keep blood pressure within normal levels. To accomplish this it is critical to have a strong medical support system, especially as patients with type 1 diabetes transition from child hood to adulthood. Perry et al. (2011) found that young adults with type 1 diabetes were not receiving proper diabetes services in rural areas of New South Wales, Australia; they reported that the patient either had not access to diabetic care, or the care offered was inadequate and not age specific. There was a wide gap in the level of care and in the services the patients with diabetes received in childhood and in adulthood; patients felt they had been abandoned by the healthcare system, citing fragmentation of care, lack of coordinated care, and minimal support. This gap in the healthcare system in rural Australia may account for the higher prevalence of diabetes, complications from diabetes, and death among diabetic people in the lower socioeconomic groups, which is nearly double the rate in diabetic people in the higher socioeconomic groups (AIHW, 2008).
Living with diabetes is stressful at best; once diagnosed with the disease the patient knows that permanent life-style adjustments are to be made in order to live with the disease. However, if the disease is caught early, the patient cooperates with the diabetes management team and learns about the disease, the impact on quality of life can be minimized. The quality of care of a child with type 1 diabetes depends on the ability of the parent to adapt to the challenges of caring for the disease. The primary end of this study is to evaluate factors that affect parental care of type 1 diabetes mellitus.
Research Methodology
Parents are ultimately responsible for the day-to-day monitoring of their child’s type 1 diabetes and the parents ability to cope with the management of the disease can affect the family’s quality of life. The management of diabetes can lead to unequal allocation of time and attention to other children in the family. This often leads to stress in the parents and resentment in the siblings. Thus, it is important for every member in the family to understand the challenges and extra needs of the parent in charge of managing the child’s diabetes so that the burden of caring does not overwhelm the parent. Knowing that diabetes is a constant threat to the life of the child can intensify the feeling of responsibility in the parent, as well as the feelings of guilt when the parent fails to meet this responsibility. In addition, as the child goes through the various developmental stages, new adjustments are necessary in the management routine. Not all parents are able to adjust; the incidence of parental mental distress is high and the impact of parental distress on the health of the diabetic child and on the wellbeing of the entire family can be significant.
The ultimate effect on the family of having a child with type 1 diabetes is significant and can have far-reaching consequences, while caring for a child with diabetes can bring family members closer together in certain families, many other families develop communication problems.
The aim of this study is to determine which factors have the greatest impact on parental ability to monitor the health of a diabetic child and which factors present the greatest strain on the mental health of the parent. It is important to understand the factors that affect parental management of type 1 diabetes to guide clinical management of the disease.
Data collection procedures
Face-to-face interviews will be conducted with parents caring for children with type 1 diabetes mellitus to determine which factors cause the most parental stress at each developmental stage of the disease. Some questions will be close-ended for uniformity of responses and to facilitate quantitative analysis. Other questions will be open-ended to uncover areas that have not been previously considered.
Limitations of the study
One advantage of a face-to-face survey interview is that the interviewer can control the amount of attention the respondent devotes to each question to reflect actual consideration of the issue. Another advantage is that the interviewer can ensure that the respondent understands each question and set of responses. A limitation of this approach is that it is vulnerable to bias unwittingly introduced by the interviewer. While it is important for the interviewer to establish a rapport with the person being interviewed, this can sometimes lead respondents to provide answers they perceive the interviewer is looking for.
Some of the questions in the questionnaire will be close-ended. One advantage is that close-ended questions lend themselves to quantitative analysis. However, the disadvantages of close-ended questions are that the respondents are limited to the choice of answers provided in the questionnaire and that seeing the list of responses may influence their answers. Close-ended questions require careful and systematic thinking because it may require for the respondent to make fine distinctions between choices; however, there is also no room for spontaneous answers. Another disadvantage is that respondents can become frustrated with an extended questionnaire with many questions and choices that do not allow the respondent to express their views or for unforeseen categories to emerge.
Some of the questions will be open-ended to allow for personal expression of the respondent. There are wide variations in any family dynamics and the interrelationships within a family caring for a child with type 1 diabetes may be even more complex. No two families are the same and open-ended questions can best uncover differences among families.
Finally, face-to-face interviews are by nature not random, for the interviewer gets to choose both respondents and the location.
Research Questions
Questions will be designed to evaluate (1) the prevalence of parental stress in the management of pediatric type 1 diabetes mellitus, (2) parental perception of the factors associated with the most stress, (3) parental perception of factors that impact the family dynamics, and (4) suggestions for intervention in controlling parental stress.
References
A.D.A.M. Medical Encyclopedia. Diabetes. Access at:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002194/
Australian Institute of Health and Welfare (2008). Diabetes: Australian Facts. Diabetes series No. 8, Cat. No. CVD 40. Canberra: AIHW.
Centers for Disease Control (2011). National Diabetic Fact Sheet, 2011. Access at:
http://www.cdc.gov/diabetes/pubs/pdf/ndfs_2011.pdf
Fourlanos, S., Varney, M. D., Tait, B. D., Morahan, G., Honeyman, M. C., Colman, P. G., & Harrison, L. C. (2008) The rising incidence of type 1 diabetes is accounted for by cases with lower-risk human leukocyte antigen genotypes. Diabetes Care 31(8):1546-9.
Gallego, P. H., Wiltshire, E., & Donaghue, K. C. (2007). Identifying children at particular risk of long-term diabetes complications, Pediatric diabetes 8 (Suppl.6): 40-48
Grey, M., Jaser, S.S., Whittermore, R., Jeon, S., & Lindermann, E. (2011) Coping Skills Training for Parents of Children with Type 1 Diabetes: 12-Month Outcomes, Nursing Research 60(3):173-81
Holstein, A., Patzer, O., Tiemann, T., Vortherms, J., Kovacs, P. (2012) Number and sex ratio of children and impact of parental diabetes in individuals with Type1 diabetes. Diabetic Medicine. doi: 10.1111/j.1464-5491.2012.03618.x.
Perry, L., Lowe, J.M., Steinbeck, K. S., & Dunbabin, J. S. (2012). Services doing the best they can: service experiences of young adults with type 1 diabetes mellitus in rural Australia. Journal of Clinical Nursing 21(13-14):1955-63. doi: 10.1111/j.1365-2702.2011.04012.x.
Silverstein, J., Klingensmith, G., Copeland, K., Plotnick, L., Kaufman, F., Laffel, L., Deeb, L., Grey, M., Anderson, B., Holzmeister, L. A., et al. (2005) Care of children and adolescents with type 1 diabetes: a statement of the American Diabetes Association. Diabetes Care. 28(1):186-212.
Taplin, C. E., Craig, M. E., Lloyd, M,, Taylor, C.; et al (2005). The rising incidence of childhood type 1 diabetes in New South Wales, 1990-2002. Medical Journal of Australia; 183, 5
