An Overview of Continuity of Care Model for Children with Juvenile Diabetes In West Java Region, Indonesia ABSTRACT Introduction: The absence of insulin in people with Juvenile Diabetes (JD) requires that get daily injections of insulin in addition to daily lifestyle that must be controlled. Children with JD requires routine care and control from doctors and nurses in hospitals so that the quality of life of children can be optimal. This research aims to obtain an overview of JD continuity of care model. Method: the design implemented is descriptive phenomenology. The number of participants is 18 people, consisting of 6 JD patients ; 3 parents, 2 guidance and counseling teachers, 2 doctors, 1 midwife and 3 nurses. The data were analyzed using Collaizi method. Results: this research had been identified 8 themes i.e 1) health education from doctors and nurses is needed regularly;2) the treating doctor does not change frequently because it will be confusing; 3) looking for treatment because of responsibility and feeling sad for children;4) insulin medicine is obtained according to what the doctor programmed; 5) simplified registration system; 6) fast service;7) the teacher knows how to supervise children in school and 8) the parents need a community as means of sharing information. Conclusions: continuity of care model for JD is related to 3 aspects of service ,i.e. continuity of information; communication continuity and continuity of management so that contained in the INKOLA Model (Informasi, Komunikasi and Tata Kelola). The result of research are expected to give information about the need of care so that a proper continuity of care model can be develop Keywords: children;

hyperglycemia

them [1]. Diabetes is a serious health problem faced by many countries. Nowadays, Indonesia ranked forth as most diabetes after United States of America, China and India. Juvenile Diabetes (JD) is a

hereditary and caused by autoimmune reaction in beta pancreas cells [1]. Children with JD need insulin injection, diet management and physical exercise as well emotional conditions that have to be maintained [2] so glucose in blood remains balanced and prevented from acute complication threat. Acute complication such a hypoglycemia and diabetic ketoacidosis are the biggest threat for children with JD [3]. Besides, the occurrence of chronical complications such as coronary hearth, hypertension, stroke, neuron disorder, kidney failure, blindness [4] are also the threat for children with JD. Impact of the disease is not only towards organ damage but also affect social-psychological condition. The prevalence of psychiatric disorder occurs on people with diabetes are anxiety 20%, withdrawing 7%, depression 5.5% and prolonged depression 3.5% as well suicide risk 2%. From all cases, 42.5% suffer for more than one psychiatric disorder [6]. Children with diabetes have prevalence of depression twice bigger, and adolescent three times bigger than those without diabetes [7]. Depression on children and adolescents correlated with bad health condition, blood glucose and recurrence of ketoacidosis complication [8]. Centre

with JD need special treatment [11], especially if the children with JD are still in school. The special treatment is focused on continuity care related to daily insulin injection, diet and balanced physical exercise, routine medical checkup, emotional balance and optimal stress management. Continuous treatment of children with JD is a process where children with JD and health officers particularly nurse and/or doctors work together in managing health care of JD sufferers so that they receive optimal living quality and efficient health cost [15,16]. Living quality of children with JD is very critical in supporting optimization of their roles as productive family members either in school or in their families so their goals, expectations and wills could be achieved. In developed countries, some treatment models of chronical disease patients have been developed and used for Diabetes sufferers, which are: 1) Promoter model or Community health worker (CHW) model, that is a model built from the existence of trained community members who is in charge to reach community and deliver messages about prevention and health promotion, 2) Chronical Disease Care Model, the development of this model is encouraged by awareness and different needs on patients with acute diseases and chronic disease. With this model, patients with chronic disease would be proactive in interacting with health team in building the ability of self-management so they could change their habits become activities that can improve their health qualities, 3) Coalition Model, this model is used in empowering people with diabetes which is emphasized in collaboration of several organizations in the community, supporting each other and become an important part in building patients’ health, 4) Continuous Care Model, this model has been reviewed for so many times in developed countries. Freeman and Huges (2010) define continuous care according to relationship dimension and case management dimension [19]. Meanwhile Ontario (2013) defines continuous care from 3 dimensions which are informational continuity, management continuity ad relational continuity between patients and health officers [20]. In Indonesia, continuity of care model for children with JD have not been met. Rumahorbo (2012) develops SESAMA model in helping prediabetes patients to manage their diet pattern and physical exercise so they are prevented from diabtes. This model synergizes nurses in community health center, health cadres and people with prediabetes in managing their lifestyle so that the balance of blood glucose is optimal [18]. WHO (2002)

states that continuous care quality for people with chronic disease involves patients and their families, community, health team and policy maker [13]. In the level of executor, the collaboration between patients and their families, community and health team could be maintained well through good preparation, motivation, information and commitment to work together. Cooperation also needs to be supported by health service organizations and community organizations that can give optimal climate for the continuity of cooperation. The use of ICCC Framework model is effective to improve life quality of patients [13], decrease health cost and improve several factors in patients’ empowerment [14] and to decrease weight of obese patients and give positive impact toward the treatment of people with diabetes. Family as an inseparable part from children with JD life becomes an important part in giving treatment and teaching and presenting supportive environment to support children 2 health condition [16]. Education interventions can increase family contribution in handling children with JD [21]. Family conflict related to diabetes in children is a string predictor toward children with JD life quality [22,23]. MATERIALS AND METHODS The approaches used in this research were phenomenology and literature review. The participants of this research were children with Juvenile Diabetes, Parents of children with JD, teachers, doctors and prolanis program holder. Data collection was conducted through literature review, in-depth interview and FGD. Literature review was aimed to review various similar models that have been developed in Indonesia or other countries. The models obtained would be tested for their management ability in the field through deep interview with informants and focus group discussion. The data collected during research was the result of in- depth interview and the result of observation that was field note. Data analysis in this research was thematic analysis using Colaizzi (1978 in Streubert & Carpenter, 2003) approach. RESULTS The participants were 18 Respondents “P” (People with JD): consisted of 3 male and 3 female. The age was ranged between 7 – 14 years old; education of Elementary School 4 persons and Junior High School for 2 persons. The length of suffering from diabetes between 1 – 10 years; Respondent “OP” (Patients’ Parents): all three were housewives, ages between 30-34 years old, education of Junior High School and Senior High School, and their head of family work in private companies. Respondents “GS” (School Teacher): consisted of 3 Health School teacher and guidance and counseling teacher. They all were female, knew patients for about 1-2 years; Respondent “Dr” (doctors): both of them were female, handling patient in prolanis program for 6 months – 2 years. Respondents “Ns” (Nurses): Both of them were female, 1 midwife and 3 nurse; handled prolanis for 6 months – 3 years. According to literature review, the result is as follow: Freeman and Huges (2010) defines continuous care according to relational dimension and case management dimension [26]. Continuous relational dimension is called as relationship continuity which means that, sustainably, Patients and health officer establish therapeutic relationship. Continuous case management dimension is called as management continuity means that there is consistency and continuity of patients’ management including provision of information, plan for nursing care, therapy program and care needs coordination. Ontario (2013) defines continuous care from 3 dimension which consists of informational continuity, management continuity and relational continuity between patients and health officers. Informational continuity is defined as the availability of information about patients in all health service settings. The continuity of case management is defined as the availability of standard and protocol used in taking care of patients, accessibility of patients in obtaining service and the facility for patients to make an appointment with health officers. Relational continuity is defined as therapeutic relationship between patients and health officers sustainably. According to the results of the analysis, parents of children with JD want fast services and do not want to wait longer because it is so tired for their children beside they have to leave school; “manual registration, long queue, pity children” (P1), the registration took so long, have to wait for the doctor, took long time to get the recipe too, children were so tired, children at least had to leave school for 2 days in a month only to control their health; there is continuity of information about children condition from every control visit so parents can know how their children improved; “there was doctor’s phone number, but do not dare to text him” (OP1&2), “I have asked by SMS but the doctor did not reply, so I do not want to do that again” (P1), “receive information directly from the doctor, yachhh,…understood, enough (laughing, but doubtful)” (OP1); Insulin available according to children’s needs; “insulin is limited, the insulin sometimes not available in hospital so we have to find it in any BPJS drugstore, sometimes we have to buy it ourselves” (OP1); the needs and availability of adequate information from health officer and provision of information space when parents face hard conditions in handling their children in house, “they only explained about medicines. Food was not limited,…children could eat anything they wanted” (OP1&2), “the doctors change frequently, so the information received often times different (OP1&2), wah…I’m so happy but never do that” (OP1&2): there is intimate and harmonious relationship between health officers, similarity and adequacy of information between parents and teachers and share information about children condition. The arrangement of service system could ease the access to medicine and registration and also to children condition that monitored and delivered to parents. Service administration should give space for children to not leave their school for too long (2-5 days in a month) because they have to do blood check as a requirements top get recipes given by the doctor and a long time to wait for the doctor. DISCUSSION From the thematic analysis, it is obtained 3 aspects related to the continuous care for children with JD: A. Informational Continuity: Information obtained from health officers (doctors and nurses) continuously for every children with JD; therapeutic relationship that is not only happened inside hospital but also in the house reciprocally. B. communicational continuity: to know each other between doctors, nurses, parents of children with JD and administrative officers. C. Management continuity: service standard and compliance to implement that by all related parties and socialized with parents of children with JD; hospital has SOP to treat children with JD related to registration; service flow; laboratories check, provision of medicines and guidance toward children’s need when they are in house; involvement of parents in decision making for children with JD as well School and Teachers need to be involved in health care of children with JD. Children receive medicines in accordance with their treatment and laboratory examination for the need of treatment. Health officers (doctors and nurses) monitor children with JD continuously and monitor parents who are lazy in controlling their children to hospital. Continuity of Care is related to Informasi, Komunikasi dan Tata Kelola, abbreviated as INKOLA. Components INKOLA are children’s families (children with JD and Parents); Hospital (System, Policy, Health Officers (Doctors and Nurses)) and School (guidance and counseling teachers and UKS teachers). Model Description INKOLA model is a continuity model for children with Juvenile Diabetes by involving important elements related in children’s life such as family, especially parents, school that is represented by guidance and counseling teachers / school health teachers and Hospital by doctors and nurses as health officers who give health care directly to children with JD and their families. The relationship between components in the INKOLA model is shown in the following figure-1 The model describes the availability, adequacy and consistency of information received by patients either in hospital, house and schools from all related elements so the patients can undergo their daily activities and have optimal life quality and the availability of policy and protocol to treat integrative patients continuously. Standardization of consistent electronic registration system and implementation of service policy of treatment and laboratory is needed. Model Components a. Hospital As an institution providing health care providers and service policies that can facilitate patients in accessing services related to the registration system, laboratory services. Adequacy and ease in obtaining drugs according to the therapy program of the treating doctor. Holistic and sustainable services, supported by health workers who are relatively constant in providing services to patients so that continuity of services and information can be obtained by JD persons and their families. Good governance that allows people with Juvenile Diabet and their families to get standardized services related to nursing care, medical services and laboratory services. Continuous care and monitoring of children's health at home. The hospital also needs to build partnerships with schools in building networks in providing services and assistance in schools. b. Family As the closest environment for children with JD, families are a source of fulfilling the physical and emotional needs of children so that their involvement is important in caring for children at home. Parents and / or 5 children are equipped with therapeutic information and communication for growth by doctors and nurses. Comprehensive nursing services for patients in hospitals and at home. c. School School is the second institution after the family where most of the time the child is and is active in school. Schools where children learn need readiness to recognize the needs of children of children with diabetes. Knowledge and attitudes of teachers regarding diabetes that occurs in children and skills in managing unexpected conditions when children experience it in school. The INKOLA model is a model that still requires the elaboration of various programs and activities specifically in integrating elements of the family, hospitals and schools in the development of meeting the ongoing care needs of information, communication and governance. Governance services in hospitals as complex elements require structuring the system of health services such as registration, health examination services, procurement of medicines, laboratory examinations, doctor assignment systems and patient nursing care. Provision of fixed protocols (Protap) services and their implementation and implementation consistently. CONCLUSION The INKOLA model is a model of continuity of care for children with Juvenile diabetes who describe the relationship between Juvenile diabetic family, hospitals as health care institutions and schools as educational institutions Descriptions of various programs and activities are needed in integrating the elements involved in the model so that they can be applied in

JD. RECOMMENDATION Further research is needed in implementing the INKOLA intervention program to obtain optimal quality of life for children with JD. It is also necessary to optimize the role of first-level health facilities (Puskesmas) in developing sustainable care for children with JD. Figure 1. Shows the relationship between the three components in the INKOLA Model KELUARGA INFORMASI KOMUNIKASI TATA KELOLA Rumasakit Dokter,perawat SEKOLAH Guru wali, UKS Bibliography 1. Abolfotouh, M. A., Kamal, M. M., El-Bourgy, M. D., & Mohamed, S. G. (2011). Quality of life and glycemic control in adolescents with type 1 diabetes and the impact of an education intervention. International Journal of General Medicine, 4, 141–152. http://doi.org/10.2147/IJGM.S16951 2. Abolfotouh, M. A., Kamal, M. M., El-Bourgy, M. D., & Mohamed, S. G. (2011). Quality of life and glycemic control in adolescents with type 1 diabetes and the impact of an education intervention. 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