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CHAPTER ONE
INTRODUCTION
1:1 Background

Diabetes Mellitus is a chronic metabolic disease identified among children. A majority of children with diabetes experience Insulin Dependent Diabetes Mellitus (IDDM). This condition is known as Type I Diabetes Mellitus (T1 DM). It is caused by insulin deficiency which is usually followed by autoimmune destruction of the insulin-producing pancreatic beta cells (Ball & Binder, 1999; Lizzaur & Clayden, 2003). T1 DM typically emerges before the adolescence period (Hackworth et al, 2013). Most populations in the world show that the incidence increases with age and is highest among children between 10-14 years of age (Karvonen et al 2001). The incidence of T1 DM has increased steadily among children and adolescents worldwide over the past 20 years (Karavan, 2006).
Studies in Sri Lanka and evidence show more trends to upward the prevalence of diabetes mellitus. The earliest available study on a rural community in 1990 reported a prevalence of 2.5%. Age standardized prevalence of diabetes had increased from 2.5% in 1990 to 8.5% in 2000 (Illungasekera et al 2004). The largest study of the diabetes prevalence in Sri Lanka in 2005 showed a prevalence of 14.2% among males and 13.5 among females (Katulanda et al, 2006). One in five adults in Sri Lanka has either diabetes or pre diabetes and one-third of those with diabetes is undiagnosed (Katulanda et al 2008). The available documented data on children and adolescents with T1DM in Sri Lanka is not in a satisfactory level. Only a few clinical institutes in Sri Lanka are maintaining a registry of T1DM patients who are treated at particular clinics. For instance, the pediatric endocrine clinic at the Lady Ridgeway Hospital (LRH) and the National Diabetic Center (NDC) maintains registries of T1DM patients. The incidence of T1DM in Sri Lanka has not been identified due to the unavailability of accurate and collective data of children and adolescents with Type 1 DM. Even though an incidence data registry is not available in Sri Lanka, there has been a definite increase in the incidence over the past few years (Atapattu & de Silva, 2012).
The management regimen of T1DM is complex and demanding. It requires both knowledge and skills (Kelo et al, 2011; Hanna et al, 2013; Jaser et al. 2012; American Diabetes Association, 2009; Whitemore et al, 2012; Schilling et al, 2001; Marshall et al, 2006; Helgeson et al , 2007). Diet planning, exercise, multiple daily administration of insulin, managing hypo and hyperglycemic attacks, prevention of complications and proper hygienic care are important measures in managing T1 DM (Schilling et al, 2001; Pelicand et al, 2013). Adolescents with T1 DM have to carry out daily management activities for the rest of their lives (Olinder et al, 2011). The patient and the family are primarily responsible for following a management regimen.
Self-care is the cornerstone to get adapted into this chronic condition. It is the key to a good physical and psychosocial outcome of the disease (Schilling et al, 2006; Schilling et al 2001). Self-care management of T1DM in children and adolescents is an active and proactive process. This is a daily, lifelong and flexible process. Shifting and sharing responsibilities for tasks related to diabetes care and decision making between children and parents are an important component. (Schilling et al, 2011).
Self-care patterns are developed and established at the school age. Even though the children have the technical skills, they need supervision (Ingersky, 2010; Schilling et al, 2006). ). Parental involvement is crucial to manage this chronic condition effectively (Marshall et al, 2006; Helgeson, 2007; Jaser et al, 2012; Ingersky, 2010; Olinder et al, 2012). The level of parental involvement is required to be coordinated with the developmental stages of the child (Schilling et al, 2002) as both over and lack of involvement may have negative impacts on the management of diabetes in adolescents (Jaser, 2012).
Parents begin to transfer responsibilities related to diabetes management to children in their late childhood, when the children are around 8-11 years of age (Schilling et al, 2013). Anderson et al (2010) recommended that the optimal transfer of responsibilities of tasks related to diabetes should be made over the early adolescence period in each family. This should be gradual and it is better to start early. Children those who attend schools (age between 8-11 years) can begin to assume more tasks such as insulin injection and blood glucose monitoring but they need correct supervision (American Diabetes Association, 2011). Adolescents who are 12 years and above are able to perform self-care management tasks but they still need help with decision making in relation to insulin adjustment (Jaser et al, 2011). The increment of self-care responsibilities of adolescents should be gradual. Children with T1 DM are counseled to administer injections when they are between 10-12 years; monitor blood glucose level when they are between 8-10 years and comply with meal plan when they are between 12-14 years in Japan (Chien et al, 2007). Negotiations to clarify the responsibilities for self- management must be a continuous process between adolescents and parents (Olinder et al, 20011; Marshall et al, 2006). The practice of transferring care from parents to child is a complicated process and is not well described in the literature (Schilling et al, 2011). Sri Lankan children and adolescents have unique interrelationships with their parents and family members. They show a close relationship with the family system. Their main role is to complete education in their childhood period. Most parents consider the responsibilities of their children as their own. Parents usually provide their fullest support for the day to day work of their children. A patient with T1 DM had to follow a complex treatment schedule which is based on day today self-care practices. The adolescence period is the substantial period to perform self-care tasks by themselves. The process of sharing self-care tasks among Sri Lankan adolescents with T1 DM is not known clearly as scientific studies related to this area were hardly found.
The existing literature presents significant factors associate with Self-care. Age, the duration of the disease and sex is the most significant predictors of sharing responsibilities. Children increase their self-care responsibilities with their increasing age and those who have short diabetes duration period have reported significant diabetes goals than those with a longer duration in USA (Anderson et al, 1990 & Chao et al, 2014). The systematic review of Pathiranage et al, 2015 recognized ethnicity, age, gender (Neylon et al,2013; Dashiff et al 2006), authoritative parenting (Greene et al,2010), different cultural and ethnic groups (Guo et al,2013) , maternal separation anxiety (Dashiff et al 2009), characteristics of the child, nature of the illness, support from the parents, environment in the school, health care team (Kelo et al, 2011), socio-economic status, family, parenting style, extra familial network, personality, beliefs, knowledge, self-efficacy, skills and coping behavior (Neylon et al,2013) as the associated characteristics of self-care behaviour. The self-care theory of Orem (2001) describes the basic conditioning factors associated with self-care. Dashiff et al, 2006 suggested concentrating on the basic conditioning factors such as issues in the family system, patterns of daily living, environmental factors, and the availability of resources and adequacy of future studies. Experience, skills, motivation, cultural beliefs, values, attitudes, confidence, habits, functional and cognitive abilities, support from others and access to care are the factors affecting self-care (Jaarsma et al, 2012). The cultural norms of the patient, his or her attitudes, beliefs, socio economic status and knowledge about the disease affect the self-management of diabetes (Nam et al, 2011; Sowattanangoon et al, 2009). Self-care

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