“‘ w . _~ A scREIsNING PROTOCOL Io AID IN THE IDENTIFICATION OF ADOLESCENT DIABETIC FENALEs WHO MAY BE RRACIICING RISKY HEALTHH‘}. _ cARE BEHAVIORS Scholarly ijepI IoI IIIe Degree of M S N * MICHIGAN STATE UNIVERSITY MARY SUSAN McMAHON ' '°‘~ . .. .I _ A - . .. . ' .. ~ . .. - . . < A I . . _ . , . . -. .V. ’V .. _ 0- In . ' . . ' . - .. . . . . .- u. _ .. . '-- - A , . ‘ . -. ' . " o 0 . ' I . _ ‘ - . -- - - . . , .~ 0 . ‘ . _ " ‘D .- .. . A ' . . ." ' . . "'° . . .. I ‘ .. .. ‘“ 9 ,. ‘ - . ‘. ."’ _ . ‘ n . - .... I ' o . ’ ¢ . . . . . . -.. ‘ .. I a . . ‘ . c. "- -» o. . . . . o. , " . _ " u ‘ ' . . .' o _ ‘ .. I- u . .. , . .. . -. .. . . I < o . _, . u. > ' . " ,‘ . . ' ‘ o. . . ‘ -. .‘ o - . t u o. - . . . .. . ..... <-...__ LIBRARY Michigan State University PLACE IN RETURN BOX to remove this checkout from your record. TO AVOID FINES return on or before date due. MAY BE RECALLED with earlier due date if requested. DATE DUE DATE DUE DATE DUE 6/01 c:/ClRC/DateDue.p65-p. 15 A SCREENING PROTOCOL TO AID IN THE IDENTIFICATION OF ADOLESCENT DIABETIC FEMALES WHO MAY BE PRACTICING RISKY HEALTH CARE BEHAVIORS BY Mary Susan McMahon A SCHOLARLY PROJECT Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF SCIENCE IN NURSING College of Nursing 1998 ABSTRACT A SCREENING PROTOCOL TO AID IN THE IDENTIFICATION OF ADOLESCENT DIABETIC FEMALES WHO MAY BE PRACTICING RISKY HEALTH CARE BEHAVIORS BY Mary Susan McMahon Research has documented that the main threat to adolescents' health are predominantly the health-risk behaviors and choices they make. Adolescent females, are at an increased risk for practicing such behaviors as: excessive weight control, alcohol consumption, and smoking. For adolescent females, who have diabetes, these behaviors may have a profoundly negative impact on their current as well as their future health. A review of literature yielded little information on how to identify adolescent diabetic females (ADF) who may be practicing risky health care behaviors. The purpose of this project was to develop a screening protocol to aid in the identification of ADFs between the age of 11-15 years who may be at an increased risk for developing diabetic complications as a result of behaviors they may be practicing. This protocol utilizes a well known family assessment tool and two additional tools, that were developed for this protocol, that will aid the APN in identifying these adolescents. With risky behaviors identified the APN or other health care professionals may be in a better position to intervene and affect a change that could positively impact the current and future health of these adolescents. ACKNOWLEDGMENTS I wish to thank Dr. Linda Spence for chairing my committee. If it were not for her support, encouragement, and ability to keep me focused this scholarly project would not have been successfully completed. I would also like to express my thanks to the members of my committee: Patty Peek and Billie Gamble, whose input into each of the areas of this project were greatly appreciated. Through the efforts and encouragement of these three fine scholars I have been able to focus on a subject that is important to me - adolescents diabetics. I would also like to express my love and gratitude to my husband, John, and my children, John, Mike and Megan. Their unceasing support and encouragement, coupled with their computer expertise has allowed me the opportunity to return to school and complete this project. iii TABLE OF CONTENTS LIST OF FIGURES . . . . . . . . . CHAPTER 1 INTRODUCTION . . . . . . . . . . . . . . . . Statement of Problem . . . . . . . . . . . . Statement of Purpose . . . . . . . . . . . CHAPTER 2 CONCEPTUAL FRAMEWORK . . . . . . . . . . . . Definition of Concepts . . . . . . . . . . Conceptual Framework . . . . . . . . . . CHAPTER 3 REVIEW OF LITERATURE . . . . . . . . . . . Adolescent Stage of Development . . . Body Image . . . . . . . . . . . . . . . Emotional Well Being . . . . . . . . . . Social Support Systems . . . . . . . CHAPTER 4 PROJECT DEVELOPMENT . . . . . . . . . . Tools . . . . . . . . . . . . Target Population . . . . . . . . . Confidentiality . . . . . . . . . . . Time Frame for Completion of Tools . . . Evaluation of Protocol . . . . . . . . CHAPTER 5 IMPLICATIONS FOR THE ADVANCED PRACTICE NURSE Implications for Practice . . . . . . Implications for Education . . . . . . . Implications for Research . . . . . . . CHAPTER 6 CONCLUSION . . . LIST OF REFERENCES . . . . APPENDICES . . . . iv Page \IGH . 18 . 20 . 25 . 28 . 30 . 35 . 37 . 44 . 44 . 45 . 48 54 LIST OF FIGURES Figure 1. Health Belief Model . . . . . Figure 2. Adapted Health Belief Model . CHAPTER 1 INTRODUCTION Diabetes Mellitus Type I (DM Type I) formally known as insulin-dependent diabetes mellitus (IDDM) is one of the most frequently occurring life-threatening diseases of children in the United States (Burroughs, Harris, Pontious, & Santiago, 1997). It is estimated that approximately 123,000 children under the age of 20 years (National Institute of Health, 1998), or 1 in every 400-600 children has diabetes in the North America (Burroughs et al., 1997). Although specific numbers are not available on adolescents, the majority of the 123,000 children fall in the adolescent category. In large part this is due to diabetes being primarily diagnosed in puberty, with the peak onset usually occurring between the ages of 11-13 years (McCance & Huether, 1994). Diabetes requires an intensive and complex regimen including life long behavioral changes if it is to be managed optimally. It is estimated that over a lifetime the average individual with Type I diabetes will spend approximately 60,000 hours doing activities related to self treatment (Juvenile Diabetes Facts, 1998). For adolescents who are experiencing physical, social, psychological, inter and intra personal changes at an accelerated rate, a diagnosis of diabetes could not come at a worse time in their development. Many times the adolescent is forced to choose between the developmental demands of adolescence and 1 the demands of a diabetic regimen (Burroughs et al., 1997). Often the choices they make put their health at risk and may accelerate the complications that accompany this disease. The focus of this project is to develop a screening protocol that will enable the Advanced Practice Nurse (APN) to more easily identify the Adolescent Diabetic Female (ADP) who may be at risk for choosing health care behaviors that may immediately or over time put her health in jeopardy. Much research has been done on the complications, both immediate and long term, of diabetes. Immediate complications of this disease include diabetic ketoacidosis and hypoglycemia which are medical conditions that can result from biochemical imbalances in the uncontrolled diabetic (National Institute of Health, 1998). Ketoacidosis, which is usually preventable, costs an average $6,444 per hospital admission and accounts for one fourth of the direct cost of diabetes (Javor, Kotsanos, McDonald, Baron, Kesterson, & Tierney, 1997). Long term complications associated with diabetes are macrovascular disease, ocular complications, nephropathy, and neuropathy (Roda-Kimble & Carlisle, 1995). Macrovascular disease (coronary heart disease, stroke, and peripheral vascular disease) occurs in approximately 75-80% of diabetics (Roda-Kimble & Carlisle, 1995). Ocular complications can range from blurred vision to total blindness. Retinopathy, the most common ocular complication of diabetes, occurs in up to 80% of diabetics (Koda-Kimble & Carlisle, 1995), causes from 12,000-24,000 new cases of 2 blindness each year, and is currently the leading cause of blindness in the United States (National Institute of Health, 1998). Diabetic nephropathy accounts for 30% of all patients with end-stage renal disease and is a major cause of death in DM Type I (Koda-Kimble & Carlisle, 1995). Neuropathy is a microvascular complication of diabetes and occurs in approximately 30% of diabetics (Koda-Kimble & Carlisle, 1995). Central nervous system impairment, manifesting as mild impairment in certain cognitive skills, is becoming increasingly recognized as a possible complication of diabetes (Dey, Misra, Desai, Mahapatra, & Padma, 1997), and may be associated, in part, with frequent hypoglycemic reactions. In a recent research study by Dey et al. (1997), 25% of the diabetic population studied showed signs of cognitive impairment on a day to day basis. Further research done on adolescent diabetics showed an increased incidence of depression in comparison to the non diabetic population. Possible explanation for this are thought to be that depressive illness and glycemic control may share several neuroendocrine mechanisms making depression more common in diabetics (Kovacs, Obrosky, Goldston, & Drash, 1997). Although this paper deals specifically with adolescent females, the statistics are mentioned to emphasize the magnitude of the problem that the complications of this disease can cause. The diabetic adolescents of today will be the diabetic adults of tomorrow, and therefore will eventually be part of these statistics if they are not already. There are significant data that confirm that diabetic complications may be dramatically reduced. The results of the Diabetic Control and Complications Trial (DCCT) established that consistently lowering plasma glucose levels can result in a 50-80% reduction in diabetes-related complication (Burroughs et al., 1997, Daviss, Coon, Whitehead, Ryan, Burkley, & McMahon, 1995). The significance this has for adolescent diabetics and the APNs who take care of them is overwhelming. Better glycemic control could improve the current and future health of this population. However, even with these statistics more than 50% of adolescents choose not to adhere to suggested medical regimens (Kyngas & Hentinen, 1995; Kyngas, Hentinen, Koivukangas, & Ohinmaa, 1996), and in fact participate in behaviors that may put their health at risk. Why? The answer is complex. Adolescence is a time of experimentation, finding self (identity), establishing independence and being accepted by peer groups. The intensive medical regimen and behavioral changes necessary to accomplish normal glycemic control is not easily integrated into an adolescent's lifestyle. Also, with the diagnosis of diabetes the adolescent may feel different from her peer group. If the adolescent is put in a position to choose between the diabetic regimen and being a normal adolescent, much of the time she will choose to be a normal adolescent, even though she is aware of the medical consequences. Because of the develOpmental tasks that adolescents must accomplish, ADFs are considered at risk for psychosocial morbidity (Gortmaker, Walker, Weitzman, & Sobol, 1990). The presence of a chronic disease such as diabetes may alter social interaction and distinguish them from their peers, which may increase the problems with normal psychosocial adjustment (Gortmaker et al., 1990). In addition to the pressure of being different from their peers, ADFs must also cope with their own emotional reaction to their disease which includes pain, hospitalizations, changes in lifestyle, and threatened survival (Department of Health and Human Service, 1991). Research showed that ADFs had lower emotional well-being scores, worried more about their future and had poorer body images than non diabetic adolescent females (Suris, Parera, & Puig, 1996; Wolman, Resnick, Harris, & Blum, 1994). The risk of psychological adjustment problems seems to reflect more the presence of the disease rather than the severity (Council on Child and Adolescent Health, 1993). Adolescent diabetics are less likely to follow their prescribed medical regimens than either their younger or older cohorts (Weissberg-Benchell, Glascow, Tynan, Wirtz, Turek, & Ward, 1995). Many of the risky health care behaviors they practice are done in an attempt to improve body image (excessive dieting, skipping insulin), or to be accepted by their peer group (ignoring diet, not testing glucose, not disclosing diabetes). Why 5 would an ADF choose to ignore the findings and make choices, either actively or passively, that may risk her current and future health? How can APNs identify these adolescent females that are, or may be at risk? Part of the answer lies with the APN understanding the adolescent's stage of development, emotional well-being and the importance they place on body image and social supports systems. Emblem Research and reports have documented that the main threat to adolescents' health are predominantly the health- risk behaviors and choices they make (Resnick, Bearman, Blum, Bauman, Harris, Jones, Tabor, Beuhring, sieving, Shew, Ireland, Bearinger, & Udry 1997). Adolescent females, between the age of 11-15 are at an increased risk of practicing unhealthy behaviors such as: excessive weight control, alcohol consumption, smoking, and other behaviors that may negatively impact their health (Resnick et al., 1997). ADFs are at an even greater risk because these behaviors may have a profoundly negative impact on not only their current health but their future health as well. The driving forces behind these risky behaviors are strongly associated with the adolescent's stage of development, body image, emotional well-being and social support systems. The adolescent's perception of each of these four areas, but especially body image and social support will, in part, dictate the extent to which risky unhealthy behaviors will be practiced. APNs must be educated about the risks these adolescents are willing to take and why they are willing to 6 take them. They must acknowledge, understand and accept the difficulties that diabetic adolescents are faced with when attempting to integrate their disease into their life. APNs need to ask the necessary questions to elicit the information needed, if they hope to intervene and make a difference in this unique group of individuals. The first step to helping these adolescents is to recognize which adolescents are at risk and why. 2322253 The purpose of this project was to develop a screening protocol to aid in the identification of ADFs between the age of 11-15 years who may be at an increased risk for developing diabetic complications as a result of risky health behaviors they may be practicing. The protocol will place emphasis on social support systems, body image, emotional well-being and stage of development. CHAPTER 2 CONCEPTUAL FRAMEWORK D Ei 'l' E I] : I Several concepts must be defined to understand how the variables relate to the problem. The following words or phrases are defined for the purposes of this project: adolescence (early and middle), Diabetes Mellitus Type I, diabetic regimen, risky health behaviors, body image, social support, complications, and adherence. Adeleseenee. Adolescence is usually defined as the stage of life starting from puberty to the onset of adulthood (Kyngas et al., 1996). Age boundaries may extend from 10-13 to 19-22 (Kyngas et al., 1996) and vary from stage to stage. There are four stages of adolescence: preadolescence (10-12), early adolescence (11-14), middle adolescence (13-16) and late adolescence (17-22) (Barkauskas, Stoltenberg-Allen, Baumann, & Darling-Fisher, 1998). This project will only pertain to adolescent females between the ages of 11-15 years (early and midadolescence). Diabetes. For the purposes of this paper diabetes will refer only to DM Type I. DM Type I is a disorder that is thought to be the result of a genetic-environmental interaction which results in a decreased production and utilization of insulin, which necessitates the need for exogenous insulin (McCance & Huether, 1994). Diabetics who have on Type I are prone to ketosis (McCance & Huether, 1994). Previous names for DM Type I were IDDM, juvenile diabetes and brittle diabetes. D1ebetie_3egimen. Diabetic regimen includes those actions the adolescent must take to manage their diabetes. It requires monitoring of plasma glucose through the use of a home glucose monitor which requires that the diabetic check her blood sugar from 1-4 times a day. Daily injections of insulin, usually from 2-4 times a day must be taken (NetHealth, 1996). The diabetic must follow a prescribed diet, current recommendations are carbohydrate counting. Risk¥_health_heheyiere. Any behavior that does or could potentially have a negative effect on health. These behaviors can be through action (dieting, excessive exercise, smoking, alcohol consumption, etc.) or omission (not taking insulin). Bedy_1mege. The adolescent's perception of how their body appears to them and to others. The onset of puberty greatly affects the female adolescent's perception of her body. Segial_finppert. Social support is defined as the physical, emotional and psychological sustenance that the adolescent perceives including qualitative family bolstering characteristics, communication patterns, peer relationships, and encouragement of regimen-specific tasks. Complicatiens. Complication is defined as a disease or injury that results from a pre-existing condition (diabetes). Frequent complications of diabetes are: 9 ketoacidosis, hypoglycemia, macrovascular and ocular diseases, nephropathy and neuropathy. Adherenee. This author's definition of adherence is: a voluntary, conscious, decision by the adolescent to actively take responsibility to optimize ones's own health, by changing behaviors to incorporate prescribed clinical interventions. Adherence in the adolescent population is not a completely independent decision, as they must rely on parents or other adults to provide the necessary medical interventions and proper food to comply with the diabetic regime. W The review of literature yielded one model that is particularly applicable when viewing the problem of why some ADF knowingly participate in behaviors that may put their current and future health at risk while others do not. The model utilized in the development of this project is the Health Belief Model (Figure 1). The Health Belief Model (HBM) is primarily a prevention model and attempts to predict and explain behavior. This model is potentially useful for the APNs who care for ADFs because it may aid them in predicting and identifying which ADF may be at risk for practicing risky health care behaviors. The implications this has on impacting these teen's health and conservation of health care resources is staggering. As stated earlier the results of the DCCT showed that consistently lowering plasma glucose could result in a 50- 80% reduction in diabetes related complications (Burrough et 10 al., 1997). The financial cost of diabetes is sobering. In 1992 the total (direct and indirect) cost of diabetes in the United States was $92 billion (National Institute of Health, 1997). With DM Type I comprising 10% of all forms of diabetes and the majority of these diabetics being adolescents the savings in health care resources would be significant. The HBM is a psychosocial, causal model. The basis of the model is that health actions are dependent on several factors: 1) the existence of motivation or a health concern; 2) the belief that one is susceptible to a health problem; 3) the belief that following a particular recommendation will be beneficial (will decrease the risk of health concern); and 4) the perceived benefits are greater than the barriers (Pender, 1996). The HBM is comprised of Individual Perceptions, Modifying Factors and Likelihood of Action. Individual perception is a person's perception of susceptibility to and severity of the disease. For the ADF within the HBM (Figure 2) her perception of severity of the disease and outcomes may influence her actions. However even if the adolescent has been educated about diabetes and the possible complications she may not believe (perceive) this will really happen to her. This can be explained in part by the belief of adolescents, especially young adolescents, that they are invincible. Therefore even though they may know on an intellectual level the ramifications of their choices, on an emotional level they may not believe that it will happen 11 to them. Perception of susceptibility to the disease is affected by the age and stage of cognitive development of the ADF. In the HBM the modifying factors affect the individuals's perceived susceptibility and severity of the disease. These factors also affect the perceived threat of the disease and the likelihood of action. The modifying factors include demographic variables (age, sex), sociopsychologic variables (personality, peer and reference- group pressure) and structural variables (knowledge about the disease, prior contact with the disease) (Pender, 1996). In order for the ADF to perceive a threat to her health from the diabetes she must feel that she is susceptible and that the diabetes is serious. For the ADF many of these perceptions are dependent on age and cognitive development. During adolescence the ability for abstract reasoning increases (Petersen & Leffert, 1995). In early adolescence, hypothetical thinking increases as does the ability to anticipate consequences (Petersen & Leffert, 1995). During this stage the thought process is becoming more logical and the ability to use abstract ideas increases (Barkauskas et al., 1997). The adolescent is beginning to work on her philosophy of life which requires the use of abstract thinking. This cognitive process was described by Piaget as the period of formal operations (Barkauskas et al., 1997). The cognitive capacities of the ADF gain more sophistication as she gets older. For this reason age and where she falls in the cognitive developmental stage will affect the ADF's 12 perception of whether her health care behaviors really are a threat to her health. If the adolescent does not perceive that her actions are a threat to her health it will be difficult to intervene and change behaviors. Most often the adolescent thinks that her action even if undesirable can be countered by another action. An all to common example of this type of thinking is overeating or eating something that should not be eaten and then taking extra insulin to cover it. Knowledge of the ADF's perception of health and health risks will allow the APN to more effectively plan a strategy of intervention. Other influences on the adolescent's perceived threat of the disease are cues to action. Cues to action are information or influences that the adolescent may receive from her environment. Information from the media on diabetes or a family member or friend who has the disease has an influence on the adolescent's perceived threat of the disease. Health care providers, as well as an ADF's glycosylated hemoglobin may also provide cues to action. The likelihood that a person will take action is dependent on the perceived benefits of the action minus the perceived barriers to the action. Depending on the age and cognitive development of the adolescent she may not perceive that the immediate or long term health benefits of the diabetic regimen outweigh the immediate barriers that the diabetic regimen entails. Adolescents tend to live in the present. 'Future outcomes may not play an important role in shaping the early and middle adolescent's view of health 13 care behaviors. However, a significant role in the determination of whether an ADF will participate in healthy or risky health care behaviors is the perceived barriers. Perceived barriers are the most powerful dimension in explaining and predicting health behaviors (Pender, 1996). The adolescent's stage of development and the need to be accepted by her peer group are the most important factors in determining her health care behaviors. If the barriers are perceived to be few the ADF may be able to balance the diabetic regimen and the tasks of adolescence. However the tasks of adolescence are many. The need to establish independence, the need to find her own identity and the need to be accepted by her peers usually make the barriers seem greater than the benefits. If the barriers exceed the benefits the adolescent may choose to ignore or modify her diabetic regimen in the name of acceptance, in the name of being a.“norma13 adolescent. The choices the ADF makes may not only affect her immediate health but may seriously impact her future health. As APNs having an understanding of adolescent development and adolescent's perception of health and illness is essential in understanding the choices they make and why. By utilizing the HBM the APN may gain clarity in understanding the adolescent's perception of health and illness and why they make the choices they do (Figure 1). This understanding when viewed within the context of this conceptual framework may guide the APN in asking appropriate questions which may be useful in identifying ADFs who are at 14 risk. Adolescents usually will not volunteer their participation in questionable health care behaviors, it is up to the APN to recognize an adolescent that may be at risk and ask the appropriate questions. Only through acknowledging, understanding and accepting the adolescent and her perception of herself and her disease (and the obstacles it brings) can APNs hope to impact the health and lives of this unique and challenging group of individuals (Figure 2). 15 INDIVIDUAL PERCEPT IONS HEALTH BELIEF MODEL MODIFYING FACTORS LIKELIHOOD OF ACTION Demographic Variables (age, sex, race, ethnicity, etc.) Sociopsychologic Variables (personality, social class, peer and reference group pressure, etc.) Structural Variables (knowledge about disease, prior contact with disease) Demographic Benefits of action minus Perceived Barriers to preventive action Perceived Susceptibility to the disease Perceived Seriousness of the disease l V Perceived Threat of the disease i Likelihood of Action recommended preventive health action Cues to Action (media campaigns, advice from others, reminder from provider, illness family or friend) Figure 1. Health Belief Model (Pender. 1996). 16 INDIVIDUAL PERCEPTIONS HEALTH BELIEF MODEL Adolescent Diabetic Female MODIFYING FACTORS Demographic Variables Female, 1 l- 15 years old Sociopsychologic Variables Family, school, adolescent's developmental stage and peer group Structural Variables Knowledge of diabetes and complications related to "risky" health care behaviors LIKELIHOOD OF ACTION Demographic Benefits of stopping "risky" behavior: 1‘ glycemic control, I. complications minus Perceived Barriers to action I. acceptance by peers, inconvenience of regimen, feeling different, poor body image Perceived Susceptibility Does not believe anything bad will happen as a result of "risky" behavior. , Affected by age. stage, cognitive development. Perceived Seriousness Ketoacidosis: correctable t Perceived Threat Low, believes can correct any problem behaviors cause. De- pendent on: age, stage, cognitive development. v T Cues to Action Questionnaire, Ecomap, educational information, glycosylated hemo- globin. family, diabetic friends, APN, media. Likelihood of Action Low, will not stop "risky" behavior unless behaviors identified and interventions are individualized. meaningful and appropriate for the adolescent. Em. Adapted Health Belief Model for an Adolescent Diabetic Female. 17 CHAPTER 3 REVIEW OF LITERATURE Adolescents experiment with a wide range of behaviors especially where their health is concerned. Certain behaviors or choices may seem reasonable and even preferable to the adolescent, but may in fact be counter productive or even detrimental to their health. For an adolescent who is a diabetic these behaviors and choices may have further reaching implications. Due to the complexity of the disease the choices and the behaviors that the ADF chooses may increase diabetic complications and the outcome can be devastating. Why certain adolescents engage in these behaviors generated the interest in this project. The literature review enabled the author to identify four variables that appear to be related to why some ADFs are more at risk of participation in risky health behaviors while others are not. These variables are: adolescent stage of development, emotional well-being, body image and social support system. Although these variables are addressed separately, for the adolescent they are tightly intertwined. Current research cites impressive statistics on the percentage of adolescent females that participate in risky health care practices (SAMHSA, 1997). It is appropriate to mention these statistics here to understand the magnitude of the problem. First and foremost the ADF is an adolescent female whose risk is increased because of gender, age and her diabetes. In the 1960's 7% of girls between the age of 18 10-14 years used alcohol, by the 1990's the numbers had increased to 24% (SAMHSA, 1997). In 1995, the Centers for Disease Control and Prevention conducted a national school- based Youth Risk Survey of nearly 11,000 school aged adolescents to determine health risks. The results of that survey are as follows: 33.6% of female students perceived themselves as overweight, 41.1% of the students were actively attempting weight loose, 7.6% of females were using laxatives or vomiting as a means to control weight, younger female adolescents (under 14 years) were twice as likely to use laxatives and vomiting as a means of weight control then were older adolescents (16 or older), 55.9% of younger adolescents females (under the age of 14 years) were attempting to use exercise as a means to loose weight, and 5.2% of the adolescents were using diet pills to loose weight (Centers for Disease Control and Prevention, 1995). Smoking, another risk behavior, is increasing at an alarming rate and the problem is global. In a recent study done in England it was found that 10% of 11-15 year olds smoke regularly, and these smokers smoked on the average of 50 cigarettes a week (Macfarlane, 1995). It is estimated that in England alone 17 million cigarettes are being smoked each week by 11-15 year olds. Each day 450 adolescents start smoking and 300 adults die from smoking related diseases (Macfarlane). With macrovascular disease (coronary heart disease, stroke, and peripheral vascular disease) occurring in approximately 75-80% of diabetics (Roda-Kimble 19 8 Carlisle, 1995), the ADF who smokes further increases her risk and puts her health in jeopardy. Research to identify why adolescent health risk behavior is increasing at such a rapid rate is lagging behind the problem. The adolescent developmental tasks have remained the same, yet the numbers are increasing at an alarming rate. What makes the teens of today different from the teens of the 60's? Some investigators believe it is tied to the changing American family structure, some believe that it is the increased autonomy that adolescents have at an earlier age, some believe it is the increased leisure time of adolescents, and some believe it is the lack of supervision after school (Millstein, Nightingale, Petersen, Mortimer, & Hamburg, 1993). Research has been done on the effects of increased media exposure, and lack of supportive adult role models as possible explanations for the increases of adolescent females engaging in risky health behaviors (Millstein et al., 1993). What ever the reason when 50% of American adolescents have at least one risk taking behavior and 30% have engaged in multiple hazardous behaviors that threaten their health and future life (Perkins, Ferrari, Posas, Bessette, Williams,& Omar, 1997) these adolescents deserve and need to be identified so that appropriate interventions can be offered. AdQlessent_£tags_9f_neyelepment The focus of this paper is on adolescent females between the ages of 11-15 years, so only the developmental stages of early and middle adolescence will be discussed. 20 The developmental tasks of early adolescence are becoming comfortable with body changes and appearance (from the onset of puberty) and the beginning separation from parents in an attempt to find their own identity (Petersen & Leffert, 1995; Stolte, 1996). This struggle for beginning independence may cause increased conflict in the parent- child relationship as the adolescent starts to rebel against the family norms and adult authority. Conformity to and acceptance of peer group standards and peer friendships gain importance. Peer groups usually consist of the same sex friends (Barkauskas et al., 1997). Middle adolescent tasks are to increase a sense of ego identity, attain greater independence and establish heterosexual relationships (Barkauskas et al., 1997). Peer group allegiance peaks at 15-16 years (Barkauskas et al., 1997). Teens in this stage are becoming more self-assured and are able to make more independent decisions. Adolescents at this stage have particular difficulty in adjusting to controlling or confining situations (such as a diabetic regimen) (Barkauskas et al., 1997). Adolescents move to abstract thinking but return to more concrete thinking in times of stress (Barkauskas et al., 1997). Adolescence is a time of great risks, opportunities (Millstein et al., 1993) and experimentation as they try to find their own identity and make the transition from dependence to self-reliance and independence (Gilliss, Highley, Robets, & Martinson, 1989). The stage of development at the time of diagnosis of diabetes can profoundly effect the developmental changes in 21 self-image, dependency conflict, and interpersonal relationships (Gilliss et al., 1989; Silverstein & Johnson, 1994). If the diagnosis occurs before independence is established regression to dependent patterns may occur. The establishment of independence is a major developmental task of adolescence. Multiple factors enter into the process of independence (Barkauskas et al., 1997). A teen's cognitive and decision making skills must be evaluated. To some extent independence is affected by societal expectations. The giving of responsibility and the gaining of independence should not be age graded. Not all 11 year olds are equally responsible, as not all 15 year olds are equally responsible, but for the most part the degree to which independence is granted is related to age. Parents and adolescents must find a balance that is acceptable for both. Parents at times have difficulty giving up control of their children, but it is necessary for the adolescent to establish independence to progress through the appropriate stage of development. For the parents and ADF the relinquishing of control and the acceptance of independence is complicated by the diagnosis of diabetes (Burroughs, Pontious, & Santiago, 1993). For the ADF additional responsibilities come with independence, that of self-care. Current literature on diabetes encourages developmentally appropriate self-care autonomy, but relatively little data is available to guide parents and health professionals as to what is appropriate (Wysocki, Taylor, Hough, Linscheid, Yeates, & Naglieri, 22 1996). There may be parental concern about allowing the adolescent total self-care autonomy. If the diabetes was diagnosed before independence was established the ADF may want her parents to continue assuming the responsibility for the disease or she may want her parents to relinquish all responsibility for the disease. If the diabetes was diagnosed after independence was established there may be fear on the parents part of allowing the teen to manage the disease. Either way the ADF and her parents must find a way to establish a comfortable balance for them both. Current research shows that independent of the adolescent's age, families that are able to maintain parental involvement in the management of diabetes were likely to have better diabetes outcomes for their teens (Anderson, Ho, Brackett, Finkelstein, & Laffel, 1997). Cagnitixe_neyelepment. Cognitive development and the capacity for abstract reasoning increases during adolescence (Petersen & Leffert, 1995). As mentioned in the conceptual framework, during early adolescence the capacity to think hypothetically increases, as well as the ability to use formal logic (Petersen & Leffert, 1995). Formal logic allows the adolescent to go beyond the concrete to use verbal hypothesis and logical deductions (Petersen & Leffert, 1995). Adolescents can start to imagine hypothetical situations and anticipate consequences (Petersen & Leffert, 1995). As cognitive development increases so does the ability to make better decisions, be aware of risk, and think about 23 the future. Some researchers report that by the age of 14 years (midadolescence) the ability to reason and make decisions are as good as in adulthood (Petersen & Leffert, 1995). The differences are in experiences and emotions. Adolescents often are put in situations in which they lack experience. These situations are often challenging and emotionally laden. In this situation adolescents often make decisions impulsively and without considering the consequences because they revert back to the more familiar concrete thinking process (Petersen & Leffert, 1995). Research has been done on adolescent decision making using traditional models of decision theory. Furby and Beyth-Marcom (as cited in Peterson & Leffert) suggest that the difference between adolescent and adult decision making is that adolescents consider different options available to them and that they may assign different risk and consequences to their decision (Perkins et al., 1997; Petersen & Leffert, 1995). Further research has shown that adolescents tend not to underestimate risks but that due to lack of experience their understanding of the facts or their expectation may be different or even faulty (Petersen & Leffert, 1995). Even with understanding the facts many adolescents tend to believe that “it won't happen to me" and make decisions based on that philosophy. Although adolescents usually continue to increase their ability to make responsible decisions, often the teens are put into situations that challenge that ability. Both experiences and emotions play a role in the decision making process 24 (Petersen & Leffert, 1995). For the ADF when put in situations that are challenging or emotionally laden, the ADF may revert back to more concrete thinking or respond impulsively and make a decision that is not in the best interest of her health. The ADF may also find herself in situations where she has the ability to think logically and not underestimate the consequence but the need to fit in and belong surpasses the need to respond logically. 89d¥_1mass Early adolescence is thought to be a time of transition from childhood into adolescence proper. The onset of puberty starts a chain of events that effects the physical and psychological development of the adolescent. Body image and self-esteem are effected by these changes (Petersen & Leffert, 1995). Body image is of major importance to the teen. Many of the health risk behaviors (excessive dieting) that the teen engages in are done in an attempt to alter their body image so as to gain acceptance in the eyes of their peers and themselves. Adolescent females, in particular, are at a higher risk for practicing dangerous health behaviors in regards to their weight, as they try to attain society's unattainable.“idealr body image (Thompson, 1996). Research supports that girls view maturation more negatively than boys (Petersen & Leffert, 1995) because increased weight and fat deposits are in direct conflict with society's emphasis on the long and lean body shape (Rydall, Rodin, Olmsted, Devenyi, & Daneman, 1997). ADFs are at an even greater health risk than normal adolescents 25 because manipulation of their weight directly effects glycemic control and may hasten complications or more serious outcomes. In addition, with the onset of diabetes a weight gain of up to ten pounds is normal (NetHealth, 1997) which further alters the ADF's perception of her body image. Improved body image, self-esteem and the need for peer acceptance are driving forces for the adolescent female in this stage of development (Petersen & Leffert, 1995) and the choices they make whether healthy or unhealthy are usually directed at accomplishing that goal. Another added risk factor for adolescent females is the timing of puberty. Early maturation of girls puts them at risk because their development is dyssynchronous with that of their peers (Petersen & Leffert, 1995). Adolescents need to be accepted. They need not to be different from their friends. Early pubertal development is associated with more negative psychological outcomes in girls and higher self- esteem in boys (Petersen & Leffert, 1995). For girls the early pubertal development makes them more prone to feelings of overweight and may encourage the development of eating disorders or excessive dieting (Petersen & Leffert, 1995; Silverstein & Johnson, 1994). Excessive dieting, unhealthy tactics to loose weight, and eating disorders are all well documented problems associated with adolescent females (Neumark-Sztainer, Story, Toporoff, Cassuto, Resnick, & Blum, 1996). The peak incidence of anorexia nervosa occurs between the ages of 13 and 16 years (Peveler, Fairburn, Boller, & Dunger, 1992). 26 ADFs are at a particular risk for developing eating disorders because on average they were found to be heavier than their non diabetic counterparts and diet more intensively to control their shape and weight (Peveler et al., 1992). Research has shown that up to 33% of ADFs have eating disorders, binge eating, or skip insulin injections (Kovacs & Charron-Prochownik, 1995; Rydall et al., 1997). ADFs have been reported to adjust their insulin dose to cope with binge eating and to control their weight (Neumark- Sztainer et al., 1996). Another study suggests that these practices may result in poorer blood glucose control and greater risk of microvascular complications (Rydall et al., 1997; Neumark-Sztainer et al., 1996; Peveler et al., 1992). Problems associated with disordered eating may include increased ketoacidosis, hospitalizations, and complications such as retinopathy, nephropathy, and neuropathy (Neumark- Sztainer et al., 1996). Researchers from Toronto Hospital, the University of Toronto, and Toronto Hospital for Sick Children confirmed some disturbing results. A study done on 91 ADFs (average age of 15 years) with varying severity of eating disorders yielded the following results: in the adolescents who had highly disordered eating at the start, 85% had some degree of retinopathy after 5 years, compared to 43% of those with moderate disordered eating and only 24% of those with normal eating behavior (Rydall et al., 1997). Predictors of binge eating, purging and other eating disorders in ADFs are: age (younger ADFs have higher incidences of eating disorders than older ADFs) and weight 27 dissatisfaction (poor body image) (Newmark-Sztainer et al., 1996). Eating disorders are a major health concern among adolescent girls, but ADFs who suffer from eating disorders have even greater health risks (Kovacs & Charron-Prochownik, 1995; Neumark-Sztainer, Story, Resnnick, Garwick, & Blum, 1995). Emetienal.flell:fleing Research has shown that adolescents with chronic conditions such as diabetes have lower emotional well-being scores, worry more about their future and school, have poorer body images (Wolman et al., 1994) and are at an increased risk for emotional distress (Suris et al., 1996). With the diagnosis of diabetes comes a variety of emotions. For the newly diagnosed ADF these emotions can include: disbelief that she has a life long disorder, fear about the acute and long-term complications, sadness, guilt that she did something to cause it, anger at the disruptiveness of the daily treatment, feelings of “why me", uncertainty about how her friends will react and a feeling of being different that may cause a sense of isolation (Silverstein & Johnson, 1994). Some ADFs experience mild anxiety or depression after the diagnosis, which may last up to six months. Failure to adapt successfully after that time may indicate that the ADF may continue to have difficulty in coping with her disease (Silverstein & Johnson, 1994). Some researchers have concluded that adolescents with diabetes have a higher risk of depression than their non diabetic counterparts (Kovacs et al., 1997), from 10-30% (Bauman, Drotar, 28 Leventhal, Perrin, & Pless, 1997). Others suggest that the higher incidence of depression in adolescent diabetics, especially in the first year after diagnosis, may be due to the stressors of the diagnosis, demands of the medical regimen, and dealing with the psychosocial issues (Kovacs, Goldston, Obrosky, & Bonar, 1997). Health outcomes for the ADF are affected by stress. Research has shown that poor body image, and a stressful family environment are predictive of poor emotional well- being (Hanson, Henggeler, & Burghen, 1987). In addition stress has a direct effect on glycemic control (Hanson et al., 1987). Much research has been done on how adolescents cope with stress in their lives. An ADF's coping mechanisms clearly are linked with her personality, and characteristics of the family and social environment (Midence, 1994). Further research has been done to determine what protective factors may influence adolescent females against the participation of risky health care behaviors. Parent-family connectedness and perceived school connectedness were associated with decreased risk behaviors (Resnick et al., 1997). Components of school connectedness were associated with the adolescent's grade point average, involvement in extra curricular activities, perception of concern by teachers and staff, and attendance rate (Resnick et al., 1997). Familial factors incorporated four components: parent-family relationships (connectedness, shared activities, parental presence); norms and expectations for adolescent behavior (school achievement, sexual behaviors); 29 parental modeling; and household features (access to substances) (Resnick et al., 1997). Adolescents identified that parental presence at key times of the day (at waking, after school, at dinner and at bedtime) were influential in deterring risky behaviors (Resnick et al., 1997). The role of parents and family in shaping the health care behaviors of adolescents was consistently noted (Resnick et al., 1997). Research clearly indicated that parental involvement is linked with better health outcomes for the ADF (Hanson et al., 1987). Sesial_$nnnart Although little research has been done on the effect of social support in the area of diabetes, Hanson et al. (1987) state “there is considerable evidence in the social sciences that social competence, which includes the availability of positive social relations, is a significant determinant of health status in the adolescent”. A definition of'“social supportf‘has not been agreed upon by the scientific community, but two important components have been identified: 1) structural and 2) functional (Burroughs et al., 1997). Burroughs et a1. (1997) distinguishes between these two components as: “structural components include both the sources of supportf (e.g. family, friends teachers) and. the density of this social network (the extent to which the members know each other). Functional components include many qualitative characteristics of these relationships (e.g., type of help provided, perceived helpfulness, communication effectiveness, and cohesiveness)”. For the 30 ADF the two most significant forms of social support are family and friends (Burroughs et al., 1997). Family. ADFs in good control report more family connectedness and less conflict among family members; their parents encourage them to behave independently and express their feelings (Burroughs et al., 1997). ADFs in good control generally described their family members as more committed and supportive of each other than did ADFs in poor control (Burroughs et al., 1997). Adolescents in poor control reported that they felt they were treated differently than their siblings and that family members were critical or indifferent about their diabetes management (Burroughs et al., 1997). These finding suggest that family environment and parent-child relationships may be particularly important as the adolescent first learns to deal with her diabetes. The amount of time needed for adjustment has been found to be predictive of regimen adherence in later adolescence (Burroughs et al., 1997; Hanson, De Guire, Schinkel, & Kolterman, 1995). Families who are supportive can assist the ADF in attaining good metabolic control and will be more likely to allow her to progress through the normal developmental process of adolescence (Burroughs et al., 1997). However, age at the time of diagnosis does impact accomplishment of developmental tasks (Burroughs et al., 1997). If the diagnosis occurs early before independence is established the adolescent may be caught in a dependency cycle with the parent as the care taker (Gilliss et al., 1989) and the 31 progression through the developmental stage slowed. If the diagnosis occurs after independence is established the parent-adolescent relationship is caught in a web of uncertainty about delineation of responsibility and how much support is needed or wanted. Often increasing open communication, and having a clear delineation of responsibilities and expectation can benefit the adolescent- parent relationship. Strong social support is typified by open and empathetic communication and not by control- oriented or counter dependent interaction (Burroughs et al., 1997). Work by Wysocki (as cited in Burroughs et al., 1997) suggests that good family communication along with conflict resolution skills are associated with better adherence and adjustment to diabetes. Research by Bobrow and colleagues (as cited in Burroughs et al., 1997) found that the more emotionally charged the interactions were between an ADF and her mother the less efficient they were in negotiating their differences. A balance between allowing the adolescent the independence she needs and remaining involved in her diabetes is a challenge that parents of ADFs face, but research clearly indicates that when that balance is achieved adherence to the medical regimen is more consistent, risky health behaviors are decreased and outcomes are improved. Friends. In the ADF's early years the parent-child relationship was perhaps the most significant, but as she moves through adolescence she increasingly spends less time with her family and more time with her peers. This is 32 necessary for the adolescent to move toward establishing her own independence and identity (Burroughs et al., 1997). Although family support remains important it is the establishment of, and the acceptance by peers that is one of the most important developmental tasks of adolescence. This task may be complicated by the presence of diabetes (Burroughs et al., 1997). Of immediate concern to the adolescent is the reaction of the peer group to the diagnosis. Adolescents need and want to be accepted by their peers. They do not want to be perceived as different. Varni and colleagues (as cited in Burroughs et al., 1997) found that while family support is helpful in predicting how adolescents with diabetes will comply, it is the adolescent's perception of support from their friends that is predictive of adaptation during adolescence. La Greca et a1. (as cited in Burroughs et al., 1997) showed that the type of support offered from families and friends differs in adolescence. Family members provide support and encouragement for diabetic regimen adherence while friends provide emotional and companionship support. For older adolescents, friends also provide assistance in the daily management of diabetes by reminding them to do blood sugars and take their insulin (Burroughs et al., 1997). According to research, friends are an important resource for adolescent diabetics and ADFs with few friends may be missing a key source of support which may aid in their adaptation to their disease (Burroughs et al., 1997). Encouraging ADFs to share their diagnosis of diabetes with 33 friends they trust may strengthen the bonds of those friendships and increase the ADF's feeling of acceptance. Balancing the demands of development with those of adherence is the ultimate task of adolescents with diabetes and for the APNs working with them (Burroughs et al., 1997). An additional form of social support that the APN may facilitate is putting the ADF in contact with an older diabetic adolescent or young diabetic adult (Burroughs, Pontious, & Santiago, 1993). This may allow the ADF a support person with whom she can identify with and share her feelings. Adolescence is a difficult time. Most adolescents have problems dealing with school, family, friends and the pressures of a more liberal society. But these problems may be more dangerous for an adolescent who has diabetes. The APN should continually assess for difficulties and help the ADF and her parents work through them together (Burroughs et al, 1993). For the ADF her primary social support system is comprised of her family, friends, and school. How these relationships effect the adolescent is of paramount importance. The ADF faces many challenges in dealing with diabetes, as does the APN who takes care of her. Empathy and understanding goes a long way in establishing a trusting relationship between the teen and her provider. In order to effectively help the adolescent, the APN must recognize which adolescents may be at risk for practicing unhealthy behaviors and why. This can be facilitated by the use of the screening protocol developed in this project. 34 CHAPTER 4 PROJECT DEVELOPMENT The purpose of this project was to develop a screening protocol that the APN can utilize, that will be both useful and practical in identifying ADFs who may be at risk for practicing unhealthy behaviors. In developing this protocol an extensive review of literature was conducted, which yielded several major themes of why some ADF engage in risky health care behaviors while others do not. These unhealthy behaviors were directly and indirectly linked to the ADF's perception of social support by family and friends, state of emotional well-being, and body image. The adolescent's stage of development impacted her perception throughout each of these areas. The tools for this protocol were chosen or developed in an attempt to elicit the ADF's perception of herself, her disease, and any unhealthy behaviors she may be practicing. By obtaining this information it is hoped that the APN can identify those ADFs who are practicing behaviors that may jeopardize their health and appropriately intervene. In this protocol three tools are utilized: an ecologic map (ecomap), a questionnaire and an acronym that will prompt the APN to address areas of concern and identify red flags in an ADF's behavior. The protocol is incorporated into a packet which includes: a title page (Appendix A), a table of contents (Appendix B), an information letter for the APN (Appendix C), an information letter for parents (Appendix D), an 35 information letter for the ADF (Appendix E), an instruction sheet, for the ADF, explaining the ecomap (Appendix F), an example of an ecomap (Appendix G), the ecomap (Appendix H), the questionnaire (Appendix I), and the acronym FRIENDS (Appendix J.). The information letter for the APN explains the screening protocol and the purpose. In addition, it identifies the target population, issues of confidentiality, intervals for administration, and time frame needed to complete the tools. This sheet provides general information for the APN and need not be included in each packet prepared for the ADF and her family. The parent information letter provides general information on: diabetic complications, reduced complications when diabetes is controlled, and risk taking behaviors of adolescent females. The purpose of the protocol is explained, as well as the need for confidentiality. The time commitment needed to complete the protocol is identified. The information letter for the ADF explains the purpose of the protocol and addresses the issue of confidentiality. Statistics on complications related to diabetes and reduction in those statistics with good control are provided. It also includes identification of risky health behaviors, and potential effects that they could have on a person with diabetes. An instruction sheet is included to explain how to complete the ecomap. In addition to the ecomap the genogram is also explained. If an APN is not able to assist the ADF with the completion of this tool, further clarification may be needed. An example of a 36 completed ecomap is provided. This ecomap depicts a family with three children, one fitting into the category of the target population. The ecomap identifies people, activities, and organizations that are important to the family. Relationships and energy lines are also drawn. The ecomap, questionnaire and acronym FRIENDS are described in detail below. Innis The first tool, the Ecologic map (ecomap), is a well established structural family assessment tool (Levac, Wright & Leahey, 1997). The ecomap is used to identify individual relationships of family members to each other and their environment. It is a helpful assessment tool because it depicts the flow of energy (give and take) and the nature of relationships between a family and larger systems that effect the family (Levac, Wright & Leahey, 1997). The ecomap depicts a family as the central unit within a circle and it's connections to larger systems (people, friends, extended family, activities, organizations, etc.) outside the circle. The adolescent will be asked to fill out, as completely as possible, all outside factors (people, activities, organizations, etc.) that she feels are important to, or impact upon her or her family. A key is provided in which she may use arrows to indicate the amount of energy that is generated to each activity or system and whether any energy or benefit is received back. In addition she will be asked to rank in order of importance to her, those people, activities, or organizations that effect her. 37 For example: friends (social network) #1, sports #2, school #3 etc. By the ADF indicating the energy flow and assigning a degree of importance to the activities the APN can gain insight into what the ADF feels is important and how she prioritizes people, activities, and organizations within her life. This information is valuable in assessing adolescent females at risk for unhealthy behaviors, because if the ADF identifies few people, activities, or organizations that she has interest in or feels connected to she may be at a higher risk for practicing unhealthy behaviors (Resnick et al., 1997). A simple genogram, which is a family tree, is normally included in an ecomap. In this protocol a more expanded genogram is included in the ecomap. A two generational genogram, visually depicting the family's size, names and ages of it's members, birth order of siblings and the ADF's perception of relationships among family members, will be constructed in the center of the circle of the ecomap. A separate key for the genogram is provided to depict gender and types of relationships (supportive or conflictual). The genogram will portray the family that the ADF lives with on a daily basis. If the adolescent has an additional family through divorce, separation or remarriage of a parent she may indicate that family on the back of the page using the same key as the genogram inside the circle. It is important to explain to the ADF that each family is equally important, but because the assessment in centered on her daily routine the family she lives with is the one that is placed in the 38 circle. The information obtained from the genogram portion of the ecomap gives additional clues on how connected the ADF feels to her family. This information is important because based on the review of literature Resnick et al., (1997) identified perceived parent-family connectedness as being a protective factor, which was associated with decreased risk behaviors of adolescent females. In addition to parent-family connectedness the importance of assessing the ADF within her family and how much support she perceives is well documented in Hanson's et a1. work which clearly indicates that parental involvement is linked with better health outcomes for the ADF. By being able to assess the ADF's perception of her family's dynamics, and perceived connectedness the APN will be in a better position to evaluate whether the adolescent may be at a higher risk for engaging in unhealthy practices. In order for the ecomap to be an effective tool in this screening protocol the ADF must understand the information that is required to complete it. Although cognitive development and the capacity for abstract reasoning increases during adolescence (Petersen & Leffert, 1995) the ADF may not have the capability to complete this tool independently. For the potential of this tool to be realized it is recommended that the initial ecomap be filled out by the ADF and the APN together. This would allow the APN some time alone with the ADF to gain insight into her life and perceptions and the opportunity to start to build a trusting relationship. If the ADF is an established patient 39 filling this tool out together would give the APN an added chance to gain further insight into the ADF. If time does not permit the APN to aid the ADF in the completion of this tool it is recommended that office staff be trained to do so. In the event that the ADF must fill out the initial ecomap alone, a quiet place should be provided. All ADFs should have the instruction sheet for the completion of the ecomap as well as the example of the ecomap reviewed prior to filling out this tool. The ecomap offers the APN a visual picture of valuable information regarding what the ADF deems important, her family structure, and support systems and may be helpful in aiding the APN in assessing risk behaviors and appropriate interventions. Although the review of literature yielded no specific information on use of the ecomap in the adolescent population, this author has used it on three ADFs between the ages of 12-14 years. Each adolescent has a history of DM Type I and was admitted into the hospital with the diagnosis of ketoacidosis. The author found the process of constructing the ecomap with the ADF, as well as the completed tool revealing in terms of the adolescent's perceptions of her family, friends and environment. The second tool is a questionnaire that will be filled out by the ADF. Several questions will be asked in each of the areas being assessed: adolescent development, social support systems, body image and emotional well-being. In addition there will be questions that address specific risk behaviors (weight control, excessive exercise, misuse of 40 insulin and smoking). The questionnaire consists of 36 questions and is in a format that consists of open ended questions, questions ranked on a Likert scale of 1-10, and yes and no dichotomous questions. This questionnaire will provide additional information that the ecomap does not supply especially in the areas of body image, adolescent development and emotional and physical well-being. The last two questions of the questionnaire asks the adolescent to identify short (within one month) or long term (within six months to one year) goal(s) that she would like to accomplish, and if she would like any help from the APN in accomplishing them. These questions are included in an attempt to help the ADF focus on issues that she may not have the resources or capabilities to handle. Also, it will allow the adolescent the opportunity to identify any areas of concern the questionnaire may have missed. The purpose of this questionnaire is for the APN to gain a deeper understanding of who the adolescent is and what she feels is important. The APN can tell a great deal about whether the adolescent is progressing normally through her stage of development by her answers regarding friends, acceptance, and growing independence from her family. By reviewing the ADF's answers the APN will be in a better position to evaluate whether the ADF is ”on the right track? in terms of healthy behaviors, or if she is at an increased risk for practicing unhealthy behaviors that may put her current or future health in jeopardy. This questionnaire is not meant to reveal deep psychological problems within the adolescent, 41 it is hoped that if the adolescent is displaying disturbing behaviors that appropriate interventions would already be in place. Instead this questionnaire is meant to reveal strengths, limitations, feelings and behaviors, that may signal the APN that this adolescent may be at risk for practicing health behaviors that may be dangerous. The third tool will only be utilized by the APN. This tool consists of an acronym that reminds the APN to assess each of the four areas (adolescent development, social support, body image and emotional well-being) each time the ADF is seen in the primary care setting. The acronym FRIENDS will prompt the APN to ask the adolescent about: F- famiiy (how are things going at home) and friends (does she have any close friends, do her friends know she has diabetes, how have they responded), R-regime (how is it fitting into her schedule, any problems) and rentinfi (three meals a day with snacks, sleep pattern, parent home to make dinner), I- infinlin (does she adjust her own dose) and image (is she happy with how she looks and feels, is she trying to loose weight), E- exereise (how much, how often, what type), edneatidn (how are things going in school, what activities is she involved in) and emetiens (how things going in general, any problems), N-nagging (how much responsibility does she take for her diabetes, what does she expect her parents to do), D-diet (any problems when eating out with friends or diet in general), 8-snbstanee_abnse (smoking, alcohol, drugs) and sexna1_ae;iyity. By writing the FRIENDS acronym in the ADF's chart and jotting down short notes 42 regarding areas of concern the APN can follow those issues that may lend themselves to behaviors that may put the ADF's health at risk. With the incorporation of the ecomap and questionnaire initially and then reviewing or readministering them at intervals that the APN deems appropriate it is hoped that the APN will gain insight into the ADF's perceptions of health, illness and behaviors that she may be engaging in that are detrimental to her health. With the utilization of the FRIENDS acronym with each visit it is hoped that the APN will maintain current information about the adolescent and her perceptions and will send the message to the adolescent that she is being listened to, that she is important and that she is cared about. These messages will go a long way in establishing a trusting relationship between the APN and the ADF. By establishing a trusting relationship, a sense of connectedness and identifying behaviors that put the ADF at risk the APN can initiate appropriate interventions that will have a positive impact on the adolescent's immediate and long term health. In developing a screening protocol that will aid APNs in identifying ADFs who may be at risk for participating in risky health care behaviors certain variables must be addressed. These variables include: target population, issues of confidentiality, and time frames necessary to complete the protocol. Evaluation of the effectiveness and usability of the protocol must also be addressed. 43 W This protocol should be initiated at the first visit for all newly diagnosed female diabetics, between the ages of 11-15 years. It should also be initiated on all established ADFs between the ages of 11-15 years. Every six months, or as the APN deems appropriate, the APN should review with the ADF the ecomap and questionnaire that she (ADF) initially filled out to see if there have been any changes. Each female diabetic will be monitored every three months for HbAlc. If the ADF's HbAlc remains 9% or higher, indicating poor control, it is recommended that the ecomap and questionnaire be reviewed every three months until her HbAlc falls below 9%. All ADFs will be assessed by the APN using the acronym FRIENDS with each visit. : E'l I' 1.! The importance of confidentiality in the adolescent population can not be over emphasized. This age group values their privacy. It is a fine line that the APN will walk as he or she tries to maintain the confidentiality of the ADF and the rights of the parents or family to be kept informed about their underage teenager. It is imperative if this screening protocol is to be effective and yield the information needed to determine if an ADF is or may be considering engaging in risky health care behaviors that she feel confident that her answers will be kept confidential and not be released to her parents without her permission. The APN must impress upon the parents the need for privacy and confidentiality to obtain an accurate history regarding 44 the adolescent's behavior in order to assess the risks that she may face. If the ADF is practicing a behavior that may jeopardize her life or the life of someone else the APN must address this with her as well as inform her that it is the APN's legal duty to inform the parents of the behavior. If the parents accompany the adolescent to the office visit the adolescent should be put in the exam room or a conference room away from her parents and be given sufficient privacy in which to complete the ecomap and the questionnaire. Wis Initially the ecomap may take the ADF 15-30 minutes to complete depending on her age, and cognitive ability. Instructions are provided as well an example of a completed ecomap. The preferred method of completion for all the ADFs would be to complete the ecomap with the APN. This would be beneficial in two ways. First, the questions that the APN may generate during completion of the ecomap may offer a more complete picture of the ADF's life and perceptions. Second, the opportunity for the APN and ADF to spend time discussing non medical issues may further build their relationship. The “process" of completing the ecomap may offer the APN as much information as the map itself. In considering the time constraints health care providers are faced with, it is recognized that having an APN assist the adolescent in filling out the ecomap may not be an option in all practice settings. If this is the case office personal may be trained to assist the ADF in completing the tool, however the APN should review it with the adolescent. The 45 amount of time the APN spends with the ADF evaluating risk factors may be invaluable in terms of impacting quality of health for the adolescent, her family, and conserving health care resources. Much information can be obtained from this single drawing. The APN can quickly review it and ascertain the supportive and conflictual relationships within the adolescents life, as well as seeing what importance and priorities the adolescent places on the people and activities in her life. The questionnaire will be reviewed or readministered using the same time intervals that are in place for the ecomap. The questionnaire although lengthy, offers valuable information not obtained from the ecomap. The questionnaire should be able to be completed, by the adolescent, within 15-20 minutes. If the primary care practice is such that the APN or office staff will not be able to assist the ADF in completion of the ecomap the adolescent and her parent(s) should arrive approximately 30-40 minutes before the scheduled appointment so that the ADF has time to complete the tools. If the APN is able to complete the ecomap with the ADF, arriving 20 minutes early should allow the adolescent enough time to complete the questionnaire. It would be helpful if the APN called the family prior to the initial visit to explain the reason for the ecomap and questionnaire and stress the importance of obtaining this type of information, thereby hopefully ensuring that the adolescent will arrive early to complete the screening 46 tools. The adolescent may complete the questionnaire and ecomap in the waiting room if she feels comfortable, but the ideal situation would be to have her complete them in a quiet, private place. The questionnaire will entail more time than the ecomap for the APN to interpret as the questions will be presented in several different formats. If time constraints either by the family, adolescent or the APN do not allow for the completion of both of the screening tools the APN may choose to use either the ecomap or the questionnaire singularly to assess the risks for the ADF. Although it is recommended that both tools be utilized as they assess different areas of risks. The acronym FRIENDS should be included on all ADFs charts with each health care visit. The information elicited may be helpful in pointing out strengths of the adolescent as well as areas that may be of concern. The adolescent may or may not divulge unhealthy behaviors, but only in asking will the APN have any chance of finding out. This assessment tool may be completed quickly or be integrated in the conversation throughout the appointment. In order for any protocol to be effective it must be practical. Recognizing that time is precious for all involved the screening protocol must be easy to use, efficient both in time and resources, and take a minimal amount of time for the APN to evaluate. After the initial visit, every six months the ADF should be scheduled for a 20-30 minute visit to allow the APN and the ADF enough time to review the tools and make changes where necessary. As 47 the APN gets to know the adolescent and her family it is hoped that the APN will be able to quickly review the ecomap and questionnaire and be alerted to any “red flags" that the ADF is sending. If additional time is need to talk with parents perhaps this could be done by phone. Although this does put a burden on the family and the client, hopefully the results will be worth the inconvenience. How to find the time to incorporate this screening protocol into a busy practice will be a challenge the APN will face. However, the minutes it takes to review the questionnaire and the ecomap may provide the APN with key insights into the current health behaviors of the adolescent. Only by identifying healthy and unhealthy behaviors can the APN be in a position to intervene, thereby impacting the adolescent's current and future health. W In order for any protocol to be utilized by APNs it must be effective, useable, and practical. The most efficacious protocols are useless if they are so complicated and labor and time intensive the clinicians are not able to incorporate them into their practice. The APN must realistically decide how much time he or she can carve out of their day to administer and evaluate the ecomap and the questionnaire. It is the author's opinion that the ecomap will be able to be evaluated quickly because it depicts a visual picture. Evaluating and interpreting the questionnaire will require more time due to the format and the information attempting to be elicited. 48 It will be difficult to evaluate the effectiveness of this protocol statistically. This in part is due to the many variables that come into play when administering and evaluating tools in this age group. The adolescent's age, stage of development, cognitive ability, emotional well- being, attitude on the day completing the tools, as well as her ability for abstract reasoning will influence her answers and perceptions. The effectiveness of this protocol will lie in the adolescent's ability to answer honestly and the APN's ability to identify “red flagsd‘when the ADF puts them up. The purpose of this protocol is to identify ADFs who are or may be at risk for practicing unhealthy behaviors that seriously jeopardize their health. The effectiveness of this protocol is difficult to measure objectively. This protocol assumes that the ensuing complications from diabetes are escalated when adolescents practice unhealthy behaviors. The ADF's choice to practice risky behaviors may be influenced by her stage of development, social support systems, emotional well-being, and body image. In assessing the effectiveness of whether this protocol is able to identify these unhealthy behaviors two objectives strategies may be utilized. First, the ADF should keep a journal of her blood sugars. The APN and the ADF can regularly review them to determine the effectiveness of the diabetic regime. If the adolescent is reasonably adhering to her regime some indication should be evident in her journal. If however, the ADF's blood sugars are consistently uncontrolled the 49 screening protocol may yield areas of questionable health care behaviors, which may allow the APN to appropriately intervene. It must not be assumed that adolescents whose journals reflect blood sugars within the control range, are not practicing any unhealthy behaviors. Adolescents have been known to make up numbers, or not accurately transcribe the numbers in their journal. The second method of evaluation of the protocol would be to follow the HbA1c. The hemoglobin Alc comprises the majority of glycosylated hemoglobin in the blood and is the least affected by recent fluctuations in blood glucose. The value is determined by the plasma glucose level and the life span of the red blood cell. Therefore, HbA1c is an indicator of glycemic control over the preceding two to three months (Roda-Kimble & Carlisle, 1995). In a non diabetic glycoslayted hemoglobin is usually 4-6 %. HbA1c > 9% is considered poor control in the diabetic (Roda-Kimble & Carlisle). By monitoring the HbA1c every three months the APN can assess glycemic control in the adolescent. The HbA1c can be utilized as a more effective, efficient means by which to evaluated the efficacy of the regimen and the adherence of the ADF to the regimen. It can also be used to evaluated the effectiveness of the screening protocol. If the ADF's HbA1c remains consistently > 9% the screening protocol may identify risky behaviors that are contributing to the high HbAlc. If these behaviors are identified and appropriate and effective intervention instituted, the HbA1c may decrease. If the HbA1c is consistently above 9% the APN 50 may have to dig deeper to find out what is going on with this adolescent. Even if the HbA1c is under 9% this does not mean that the ADF is not practicing any risky behaviors. The HbA1c should only be used as a guide for the APN. If the glycosylated hemoglobin is consistently high it should signal the APN to review or readminister all or part of the protocol. Identifying risk behaviors such as excessive dieting and exercising, smoking, or alcohol consumption can help explain the lack of glycemic control in the diabetic. Identifying social or environmental factors such as no parental supervision or no regular meal plan will further explain poor glycemic control and may guide the APN with the development of appropriate interventions. It is imperative that the APN keep accurate and complete records so that the efficacy of this protocol can be documented and trends can be identified. In additions to monitoring blood sugars and HbA1c there are three subjective ways to evaluate the effectiveness of this protocol. First, ask the adolescent if she thinks the tools of the protocol have made a difference. Resnick et a1. (1997) stress the importance of “connectedness” as protective factors in deterring risky behaviors. If through the process of completing and reviewing the tools risky behaviors are identified, appropriate interventions initiated, and the adolescent feels more connected to her family and/or the APN than the protocol would have been effective in achieving the objective. Second, ask the 51 parents if in their perception the ADF's behavior is any different. If again through the process of administering and evaluating the protocol areas of concern, i.e. lack of parental supervision, are identified and interventions initiated, i.e. parents making an effort to be home at key times of the day, than the protocol would have been effective in accomplishing the objectives. Resnick et al. (1997) identified that parents home at key times of the day (morning, after school, at dinner and at bedtime) as being a protective factor in deterring risky behaviors. Third, ask the APN. Through experience the APN knows what works and what does not. If in evaluating the ecomap, questionnaire and the acronym FRIENDS the APN is able to identify areas of concern he or she will be in a better position to intervene. It is rare that adolescents offer personal information, only in asking will the APN have any chance of finding out the information needed to impact the ADF's health. The ”usability” of the protocol is complicated by the population it targets. Adolescence is a complicated stage of development. Mood swings are often the norm. An ADF can swing between being overly dependent on their parents one day and wanting total independence the next. They can be cooperative and pleasing one day and rebellious the next. These feeling and actions are normal as the adolescent tries to navigate her way through this difficult stage of development. The usability of this protocol must take into account the ADF's age, stage of development, cognitive and abstract ability and her hmxxr on the day that she is asked 52 to fill out the ecomap and the questionnaire. If the adolescent is feeling “good” chances are she will be more willing to answer the questions honestly. If she has been fighting with her parents those feeling may color the way in which the questions are answered. The challenge to the APN will be to evaluate all the answers and identify consistencies and inconsistencies and press further to E determine which if any risky health behaviors the ADF is practicing. This protocol is designed to be easy to use and cost i effective. The tools of the protocol may be xeroxed at very little cost to the primary care practice. The real cost will be in the APN's time needed to evaluate, review and intervene. However, given the statistics that less than 50% of adolescents diabetics choose to adhere to suggested medical regimens (Kyngas & Hentinen, 1995; Kyngas, Hentinen, Koivukangas & Ohinmaa, 1996), and 50% of adolescents have engaged in at least one risky health behavior (Perkins et al., 1997), the time the APN invests initially may save time and resources in the future. The effectiveness of this protocol will vary from adolescent to adolescent and even within the same adolescent depending on the variables already identified. But, if even one risk factor is identified and interventions taken that decrease or eradicate it then the potential benefit to that ADF's health will have been worth it and the objectives of this protocol will have been met. 53 CHAPTER 5 IMPLICATIONS FOR THE ADVANCED PRACTICE NURSE The nursing implications for the use of this screening protocol on ADFs in the primary care setting are multifaceted. The screening protocol can assist the APN in the areas of practice, education and research. The protocol will offer APNs an opportunity to “stop" “look” and really ”listen" to their adolescent clients. The field of adolescent medicine is unique and challenging. For APNs who deal with adolescents with chronic disease the challenge is even greater. This screening protocol will allow APNs a greater depth of understanding of their adolescent diabetic female clients, and will offer them a greater opportunity to positively impact these adolescents' immediate and future health, while at the same time conserving health care resources. I 1' l' E E !' Health care is changing. It is being redesigned and redefined. In the current health care arena of managed care where the goals of cost containment and quality care are stressed, this screening protocol will facilitate those objectives. Adolescent who are diabetics and who also participate in risky health care behaviors consume additional health care resources. They can induce and accelerate complications. Ketoacidosis, which is primarily a complication of DM Type I, costs on average $6,444 per hospital admission. Ketoacidosis is often preventable. By 54 allowing the APN the time needed to do an in depth assessment of risk behaviors, while in the ambulatory setting, the APN may aid in the reduction of unneeded hospitalization thereby conserving health care resources. In addition, health care resources will be saved by decreasing the rapidity of complications. Cost containment, quality care, managed care, health promotion, illness prevention, holistic medicine, family centered approaches are the themes that are surfacing as health care emerges into the 21“ century. APNs have never before been in such a unique position to advance their profession, increase their practice and impact health care. The APN as a practitioner encompasses may roles. These roles include but are not limited to: clinician, advocate, educator, case manager, counselor, and collaborator. The APNs who provide primary health care for ADFs function in each of these roles daily. Utilization of the screening protocol for ADFs will afford the APN an even greater opportunity to advance these roles, and impact not only the adolescent but also her family, while at the same time conserving health care dollars. The American Nurses Association (ANA) (1992) defined the APN's role in clinical practice. “They conduct comprehensive health assessment. Demonstrate a high level of autonomy and possess expert skill in the diagnosis and treatment of complex responses of individual, families and communities to actual or potential health problems. They formulate clinical decisions to manage acute and chronic 55 illness and promote wellness”. This definition describes the APN's role as a clinician. History taking, assessment, evaluation, decision making, and implementation skills are integral parts of the clinician role. A holistic approach that encompasses physiological, psychosocial, behavioral, and spiritual elements will characterize the assessments made by APNs (Synder & Mirr, 1995). In utilizing the screening protocol each of these areas are addressed in the ADF (the spiritual component may be extracted from the ecomap). The ANA's definition of an APN in practice speaks to the often creative interventions necessary to accomplish the goal of improved health. For APNs who deal with the adolescent population identification and prevention is of paramount importance. With the aid of the screening tools and by viewing ADFs within the conceptual framework of the HBM the APN can attempt to predict and explain the ADF's behavior, and be in a better position to intervene when that behavior is dangerous to her health. Perhaps one of the most important roles that the screening protocol offers the APN in practice is that of educator. The opportunity to educate the ADF, her family and the community are almost limitless. After evaluating the tools, and identifying areas of concern the APN can plan and implement strategies of interventions. Nursing interventions are a key element in the care provided by the APN (Snyder & Mirr, 1995). In dealing with the adolescent the APN must construct and present the information he or she would like to impart with the ADF's age, stage of 56 development, cognitive development, and concrete and abstract ability in mind. When dealing with adolescents educational strategies can be guided by use of the HBM, in which benefit risk ratios are important in understanding and predicting the ADF's behavior. The APN must present facts regarding smoking, alcohol consumption, excessive dieting and exercise, and altering insulin dosage and the immediate and long term effects that it will have on the adolescent's health in such a way that it will at least cause the adolescent to stop and think about their risky behaviors. Impressive statistics on complications related to diabetes as well as statistics on outcomes when good glycemic control is achieved must be presented in such a way that they have relevance for the adolescent. The APN must remember that in this stage these adolescents don't really believe that these complications will happen to them. It is necessary that the APN has basic knowledge about adolescents stage of development and approach it in a way that is meaningful to them. When administering the ecomap and questionnaire the APN must explain the reason for the protocol and what it's objectives are. If the APN is in a position to aid the ADF in the completion of the ecomap a brief explanation and reviewing the example would suffice. If the APN is not in the position to offer assistance a more detailed explanation and review of the instruction sheet will be necessary. When reviewing the ecomap and questionnaire with the ADF the APN should utilize open ended questions and allow the ADF time 57 to explain her answers. The APN should sit down side by side with the adolescent when reviewing the screening tools or offering any educational information. This position sends the message that the APN has time for the adolescent and hopefully will encourage a feeling of connectedness between the two. All interactions with the adolescent should be honest and respectful. When dealing with ADFs, interventions should reflect their needs for increased autonomy and independence, for peer friendships and group membership and for support from caring adults (Millstein et al., 1993). When utilizing the screening protocol the APN is in a unique position to educate the parents and family about the risks that ADFs are willing to take in an attempt to be a “normal".adolescent. The APN must explain the magnitude of the problem regarding diabetic complications, outcomes and risky behaviors, thereby laying a foundation to explain the need for the screening protocol. Sharing information on improved diabetic outcomes when parents stay involved may be helpful to parents. Adolescence is a stressful time for families. Many parents may not be aware of the developmental tasks that the adolescents must complete to move to the next stage of their development. Sharing this information may help the parents understand where the adolescents are coming from and may impact their expectations. Realizing that parents may be stressed with the diagnosis of the disease and uncertainty in how to handle it, the APN is in a position to not only educate the 58 ADF but her parents as well. The APN should address the issue of adolescent confidentiality with the parents, making sure that they are aware that the APN will not divulge any information that the ADF tells them unless it is life threatening. Parents should be informed that the APN will abide by the same confidentiality standards regarding information they share. Educated parents and adolescents will be in a position to make informed choices that hopefully will positively impact their future. APNs are in a position to facilitate that process. The role of the APN as a case manager in practice has emerged as a strategy to provide a holistic approach to individuals and families, while at the same time balancing health care outcomes and cost (Snyder & Mirr, 1995). If the APN works in a managed care setting that utilizes case managers for chronic conditions then care of the ADF is a perfect fit. If the APN works in a private, non-managed care office than the concept of case manager may be a role in which he or she functions already as a primary care provider. Case management is well suited for clients with chronic illnesses such as diabetes, because it provides coordination of care over a period of time. The screening protocol to identify risk behaviors in ADFs is congruent with providing a holistic approach to health care. It provides the APN with physical, psychological and social assessment by which to evaluate risk behaviors. Bower (1992), described case management simultaneously as a system, a role, a technology, a process, and a service. As 59 a system it encompasses assessment, problem identification, planning, procurement, delivery, coordination of care, and monitoring to assure that all the needs of the individual are met (Snyder & Mirr, 1995). As a role, it actively coordinates care and is accountable to the client, family and organization (Snyder & Mirr, 1995). In the coordination of care the APN often functions in a collaborative role with other professionals as attempts are made to provide consistent, high quality care. Case management as a technology, generates the tools and techniques to organize the care (Snyder & Mirr, 1995). As a process, it attempts to provide continuity of care across the continuum of services (Snyder & Mirr, 1995). Finally as a service, case management assures that clients will receive individualized, high quality, and cost effective care (Snyder & Mirr, 1995). When dealing with ADFs the APN using all the strategy of case management (system, role, technology, process and service), must identify areas of concern in order to appropriately intervene and assure the adolescent and her family a holistic approach to health care. The screening protocol for ADFs aids the APN in achieving this goal. Utilization of all three of the tools of the screening protocol may reveal that in fact the ADF is practicing or is considering practicing behaviors that may jeopardize her health. With the revelation of this information the APN often functions in the role of counselor. The APN must be prepared for and feel comfortable assuming this role. A sound understanding of the adolescent's stage of development 60 is necessary. The information obtained through the ecomap, questionnaire, and the acronym FRIENDS will offer the APN valuable information about the adolescent and her perception of her family and their dynamics. “Connectedness” has already been identified as a protective factor in deterring risky behavior. In the role of counselor the APN will need to evaluate how connected the ADF feels to her family and school. If connectedness is lacking the APN should offer interventions that would promote this feeling. By being open and available to the adolescent and her family the APN may be a stabilizing force as the entire family progresses through this time of turmoil. The APN must also address the needs of the parents and family and be available to listen and counsel as they try to navigate through the stress of adolescence and a chronic illness. The fundamental tenet of nursing is “health as wholeness" (Hickey, Ouimette & Venegoni, 1996). APNs must treat the “whole” adolescent. They must understand why ADFs are willing to risk their health in order to be a normal adolescent. They must acknowledge the social pressures that adolescents of today face. The diabetic adolescent female's stage of development, social support systems, emotional well-being, and body image are all intertwined and directly affect the risks she is willing to take in the name of being accepted. The APN as a clinician in practice can utilize the screening protocol to identify 61 risk behaviors, intervene, and optimize the ADF's health and future. Wm APNs are graduate prepared nurses. APNs who practice in a setting such as primary care must possess clinical knowledge. Clinical knowledge encompasses two types of knowledge: practical and theoretical (Brykczynski, 1989). Practical knowledge is contextual and transactional, it is learned by active involvement in a situation. Theoretical knowledge can be acquired in a decontextual manner through reading, observing or discussing (Brykczynski, 1989). APNs whose client base includes adolescents must possess both types of knowledge, regarding adolescents, to be effective. Adolescent medicine is a speciality in it's own right, with good reason. Adolescents are unique. Their actions are, at times, irrational. They learn through experimentation. One cannot make them do what is good for them. They are, at times, frustrating, but always interesting. They will challenge the most creative APN to come up with strategies and interventions that work. Therein lies the professional and educational challenge for the APN. Adolescent and family education was discussed previously. Now the discussion must address the issue of ongoing professional education. APNs have already attained a certain level of education. But is it enough to deal with the chronically ill adolescent client? Healthy adolescents are a unique population with unique needs. Chronically ill adolescents have even more needs. In an attempt to meet the needs of 62 these young people it would be beneficial to incorporate a course on adolescent growth and development, as well as appropriate interventions, as part of the APN's formal education. APNs who lack the knowledge and experience of dealing with adolescents must gain the theoretical knowledge regarding stages of development, developmental tasks, and age appropriate behaviors through reading, observing and discussing in a collaborative setting. In addition, practical knowledge must be obtained. In utilizing the screening protocol it is necessary for the APN to have the theoretical knowledge to evaluate and interpret the tools, the practical knowledge to formulate strategies and interventions, and the fortitude to reevaluate, rethink and try again when necessary. Each new challenge requires new skills. Benner (1984) applied the Dreyfus model of skill acquisition which are: 1) novice; 2) advanced beginner; 3) competent; 4) proficient; and 5) expert, to the field of nursing. The APN must determine at which level he or she falls with regard to dealing with adolescent health issues. If the APN considers him or herself a novice, then they must actively take steps to move to higher levels. APNs who are the primary care providers for ADFs must first gain the skills necessary to care for adolescent females, then acquire the skills necessary to care for the adolescent female who has a chronic disease and her family. As the APN becomes more comfortable with the adolescent population it is hoped that 63 they will become more proficient in identifying adolescents who are practicing unhealthy and even dangerous behaviors. Attempting to elicit this type of information from an adolescent is a formidable task for even the “expert” APN. The APN's interviewing style and technique may make the difference between obtaining minimal or detailed information on what risk behaviors the ADF is taking. The screening protocol is an assessment protocol. It is meant to identify areas of concern in adolescent health practices. It is meant to identify the.tred flags”. The rest, obtaining the “details” is up to the APN. In order for any APN to obtain the “details” of the- behaviors, thereby being in a more optimal position to successfully intervene, the APN must possess good interviewing skills. Smith (1996) identifies two types of interviewing approaches. Doctor (provider)- centered interviewing, in which the provider takes charge of the interaction to meet his or her own needs of obtaining the symptoms, details, and other data he or she deems important. Or patient-centered interviewing in which the client is encouraged to express what is important to them. The latter type of interviewing approach is more apt to encourage the ADF to reveal more detailed information regarding risk behaviors. In addition interventive questions (linear and circular) can be an effective intervention to elicit information (Levac, Wright, & Leahy, 1997). Linear questions are used to obtain factual information. Circular questions are used to explore relationships and focus on patterns as it relates to the 64 areas of concern (Levac, Wright, & Leahy, 1997). When exploring areas of risk behaviors with the ADF both types of questions can and should be utilized in an’attempt to obtain as much information as possible. With increased education comes responsibility. As the APN gains skills and comfort in dealing with ADFs he or she can educate physicians, staff members, and the community regarding unhealthy and potentially dangerous behaviors of adolescents. Protective factors can and should be identified. The APN should seize all.“teachableftmoments in an effort to increase awareness thereby impacting the health of ADFs. I J' l' E 1 Economic considerations are forcing APNs to think differently and to factor cost into every decision (Hickey, Ouimette, & Venegoni, 1996). In 1992, the cost of diabetes (direct and indirect) in the United States was $92 billion (National Institute of Health, 1997). Ketoacidosis, which can occur in DM Type I, and is usually preventable, costs an average $6,444 per hospital admission and accounts for one fourth of the direct cost of diabetes (Javor et al., 1997). With health care reform focusing on cost containment and quality care, identifying and decreasing ADFs hazardous health behaviors would directly impact and improve the adolescent's current as well as future health, while at the same time conserving health care resources and saving a significant number of health care dollars. The health habits acquired during adolescence affect that person's 65 health as an adult. Research now indicates that early adult mortality both from cardiovascular disease and from cancer could be significantly reduced, if not prevented by improving diet and lifetime health habits acquired in adolescence (Perkins et al., 1997). This may even have a greater impact on the ADF who is already at an increased risk for cardiovascular disease. The use of research in identifying links such as this is important, and should impact the way in which an APN practices. Research needs to be an integral part of nursing and APNs need to take a more active role. APNs must become involved in research if the nursing profession is to move forward. The degree of their involvement will depend on educational preparation, employment position, and practice setting (Snyder & Mirr, 1995). Research can drive the APN's practice. It is through research that APNs can affect change within themselves and within their practice setting (Hickey, Ouimette, & Venegoni, 1996). As APNs who work with adolescents know, research in the area of social support, risk taking behaviors and chronic illness as it effects adolescents is lacking. An issue that so profoundly affects ADFs and their families, is in the area of risk taking behavior. As stated earlier over 50% of adolescents females in the United States have participated in at least one risk taking behavior. Thirty percent of the adolescent population have participated in multiple risk taking behaviors (Perkins et al., 1997). The research that is 66 available has identified several factors including the changing American family structure as possible causes that are contributing to this problem (Millstein et al., 1993). But more, much more research is needed in the area of risk taking behavior, eating disorders, smoking, and substance abuse if any change is to occur. APNs with their education and clinical skills are in an ideal position to assume that challenge. Adolescents are not children, nor are they adults. They are an entity unto themselves. Research has been done independently on adolescents, adolescent stages of development, developmental tasks and diabetes. After reviewing the literature, and developing the screening protocol it is this author's opinion that more research must now be done on how each of these four areas pertain to each other. Interventions that are driven by the pediatric or adult population will often not work in the adolescent population. Statistics on adolescents adherence to diabetic regimen bear this out. Even when information is provided on the medical consequences of poor glycemic control, greater then 50% of adolescent diabetics choose not to follow their diabetic regimen (Kyngas & Hentinen, 1995; Kyngas, Hentinen, Koivukangas, & Ohimnaa, 1996). Research must be done that addresses this issue. Health promotion programs for both healthy and chronically ill adolescents must be developed. These programs must incorporate basic knowledge about adolescent development into their design. They must recognize strengths and limitations of adolescents at 67 different ages and accommodate the varying needs of adolescents at different stages of development (Millstein et al., 1993). In the process of reviewing the literature the author identified social support as an important component in the adolescent population. More research needs to be done with regards to social support (family and friends) and it's impact on risk taking behaviors as well as the effects on diabetic adolescents. Much emphasis is placed on the importance of friends and peer acceptance in this population. However research indicates that it is parental involvement and family connectedness that is associated with a decrease in risk taking behaviors and improved diabetic outcomes (Anderson et al., 1997). With the impressive statistics of the DCCT in the reduction of diabetic related complications when tight glycemic control is maintained, further research in this area seems warranted. There is a societal trend called the knowledge explosion, that is profoundly influencing health care and professional practice (Hickey, Ouimette, & Venegoni, 1996). Nurses in advanced practice have the education and the credentials to be a part of that explosion through research. Research affects practice. Research improves care. APNs are in a unique position to improve the health and life of ADFs, by identifying risk behaviors and intervening. Research will facilitate that goal. 68 CHAPTER VI CONCLUSION Adolescent development takes place in several spheres simultaneously. Changing physical appearance, psychosocial maturation, and frequent emotional swings have led to this stage of development being identified as a time of upheaval (Johnson & Saenz, 1997). Research and reports have documented that the main threat to adolescents' health are predominantly the health-risk behaviors and choices they make (Resnick et al., 1997). The driving forces behind these risky behaviors and choices are strongly associated with stage of development, body image, emotional well-being and social support systems. It is the adolescent's perception of each of these four areas, but especially body image and social support that will dictate the extent to which risky health behaviors will be practiced. Risky health behaviors may be hazardous for any adolescent, but for the adolescent who is also a diabetic these behaviors could lead to increased diabetic complications or worse. The purpose of this project was to develop a screening protocol for the APN to aid in the identification of adolescent diabetics females between the age of 11-15 years who may be at an increased risk for developing diabetic complications because of risky health behaviors. The use of the ecomap in determining family relationships and systems or activities outside the family that impact or are important to the ADF will aid the APN in determining the 69 adolescent's connectedness to family, friends, and school. The questionnaire was constructed to yield information regarding the adolescent's and family's strengths as well as specific risk behaviors. The open ended question pertaining to the ADF's goals was inserted in an attempt to allow the adolescent the opportunity to ask for help if she did not have the resources or capabilities to accomplish the goals on her own. In addition it is hoped that it will also encourage the ADF to focus on outcomes and become active in the decision making process. The acronym FRIENDS will continually remind the APN to assess those areas of development that can easily be missed but are so important to adolescents. It is realized that adolescence is a time of gaining independence and a time of experimentation and that even with the use of the screening protocol that ADFs will continue to practice risky health behaviors. But if the screening protocol is able to identify behaviors that are potentially dangerous to the diabetic adolescent, and the APN is able to intervene and decrease those behaviors, than the protocol will have met it's objective. 70 LI ST OF REFERENCES LIST OF REFERENCES Anderson, 8., Ho, J., Brackett, J., Finkelstein, D., & Laffel, L. (1997). Parental involvement in diabetes management tasks: Relationships to blood glucose monitoring adherence and metabolic control in young adolescents with insulin-dependent diabetes mellitus. Ine_1enrnai_ef Pediatriss1_2. 257-265- Barkauskas, V. H., Stoltenberg-Allen, K., Baumann, L. C., & Darling-Fisher, C. (1998). Development assessment across the life span. Health_and_nh¥sical_assessment (2nd ed). 88-92. St. Louis: Mosby. Bauman, L. J., Drotar, D., Leventhal, J. M., Perrin, E. C., & Pless, I. B. (1997). A preview of psycho social interventions for children with chronic health conditions. Pediatricsl_1QQ(2). 244-251. Benner. P- (1984) FrQm_nox1se_to_exnert1_Exeellenee and_nower_1n_clinieal_nursing_practice1 Menlo Park CA: Addison-Wesley. Bower. K- (1992). Case_management_b¥_nnrses1 Washington D.C.: American Nurses Publishing. Brykczynski, K. A. (1989). An interpretive study describing the clinical judgment of nurse practitioners. Ssh9larl¥_Inan1rx_for_Nursins_Prastiee1_3(2). 75 104- Burroughs, T. E., Harris, M. A. Pontious, S. L., & Santiago, J. V. (1997). Research on social support in adolescents with IDDM: A critical review. Ine_Diabetes Educatcr1_231 438- 448. Burroughs, T. E., Pontious, S. L., & Santiago, J. V. (1993). The relationship among six psychosocial domains, age, health care adherence, and metabolic control in adolescents with IDDM The_D1abetes_Edusater1_12(5). 396- 402. Centers for Disease Control and Prevention, (1995). 1995 youth risk behavior surveillance system.[Online]. Available: CDC, Youth Risk Behavior Surveillance--United States, 1995. MMWR; 4s (No. 53-4), 1-86, 1995. http://www.edc.gov/nccdphp/dash/yrbs/sudi.htm#top Council on Adolescent Health, (1993). Prepared by the Committee on Children with Disabilities (1993-1994) and the Committee on Psycho social Aspects of Child and Family Health (1993-1994). Psycho social risks of chronic health conditions in childhood and adolescence. Pediatriesi_22(6), 876-878. 71 Daviss, W. E., Coon, H., Whitehead, P., Ryan, K., Burkley, M., & McMahon, W. (1995). Predicting diabetic control from competence, adherence, adjustment, and psychopathology. ' and_Adolessent_zs¥sh1atr¥1_31(12). 1629-1636- Department of Health and Human Services, Public Health Service, Centers for Disease Control, National Center for Chronic Disease Prevention and Health Promotion, Division of Diabetes Translation. Publication date: 01/01/1991. The Available: http://www.cdc.gov/nccdphp/ddt/brn_tx2 Dey, J., Misra, A., Desar, N. G., Mahapatra, A. K. & Padma, M. V. (1997). Cognitive function in younger type II diabetes. D1abetes.£arel_znil)r 32-35. Gilliss, C. L., Highley, B. L., Roberts, B. M., & Martinson, I. M. (1989). Family Health During Chronic Illness. In C. L. Gilliss, B. L. Highley, B.. M. Roberts, & I. M. Martinson (Eds.) ' ' ' 360-362. Reading: Addison-Wesley Publishing Company. Gortmaker, S., Walker, D., Weitzman, M., & Sobol, A. (1990). Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescents. Pediatzies‘ fi5(3), 67-276. Hanson, C. L., De Guire, M. J., Schinkel, A. M., & Kolterman, O. G. (1995). Empirical validation for a family- centered model of care. Diabetes_§arei_ia(10), 1347-1356. Hanson, C. L., Henggeler. S. W., & Burghen, G. A. (1987). Model of associations between psycho social variables and health-outcome measures of adolescents with IDDM. D1abetes_sarel_19(6). 752-758- Hickey, J. A., Ouimette, R. M., & Venegoni, S. L. (1996)- Adxaneed_nrastiee_ngrains- Philadelphia: Lippincott- Javor, K. A., Kotsanos, J. G., McDonald, R. C., Baron, A. D., Kesterson, J. G., & Tierney, W. M. (1997). Diabetic ketoacidosis charges relative to medical charges of adult patients with Type 1 diabetes. Diabetes_gare+_29(3), 349- 354. Johnston, E. & Saenz, R. (1997). Care of the adolescent girIS- Hemean_Health1_24(1), 53-65- Juvenile Diabetes Facts, (1998). [Online]. Available: http//:www.jdfcure.com/FACTS.html 72 Roda-Kimble, M. A., & Carlisle, B. A., (1995). Diabetes Mellitus. In L. E. Young & M. A. Koda-Kimble (Eds.) Applied ' ° ' ' 48-3 - 48-7. Vancouver: Applied Therapeutics Inc. Kovacs, M. & Charron-Prochownik, D. (1995). Eating disorders and maladaptive dietary/insulin management among youths with childhood-onset insulin-dependent diabetes mellitus. ' ' WWIB) I 291-296' Kovacs, M., Goldston, D., Obrosky, D. S., & Bonar, L. K. (1997). Psychiatric disorders in youths with IDDM: rates and risk factors. Diabetie_gane+_zg(1), 36-44. Kovacs, M., Obrosky, D. S., Goldston, D. & Drash, A. (1997). Major depressive disorder in youths with IDDM. (1), 45-51. Kyngas, H. & Hentinen, M. (1995). Meaning attached to compliance with self-care, and conditions for compliance among Young diabetics. lournal_df_Adxance_nursing1_211 729- 736. Kyngas, H., Hentinen, M., Koivukangas, P., & Ohinmaa, A. (1996). Young diabetic's compliance in the framework of the mimic model. JQnrna1_ef_Adyanced_Nurs1ng1_211 997-1005. Levac, A. M., Wright, L. M., & Leahey, M. (1997). Children and Families: Models for Assessment and Intervention. J. A. Fox (Ed) Pr1marx_health_care_9f_sh1ldren (3-13). St. Louis: Mosby. Macfarlane, A. (1995). Effectiveness in adolescent health. Acta_£aediatr1ssi_a11 1089-93- McCance, K. L. & Huether, S. E. (1994). O . o - - . o .... . .0 . . . .. .0 . . o . O . _ -_ _. and_eh11dren (2nd ed., p. 676). St. Louis: Mosby. Midence, K. (1994). The effects of chronic illness on children and their families: An overview. Genet_SQC_Q§n Ea¥9h91_Mdndgri_iZQ(3), 311-26. [Online]. Avicennia-Medline Medlars UID 95011504. Millstein, S. G., Nightingale, E. O., Petersen, A. C Mortimer A. M., & Hamburg, D. A. (1993). Promoting the healthy development of adolescents. (1), 1413-1415. ‘I National Institute of Health: Diabetes Statistics (1998). [Online]. Available: http://www.niddk.nih.gov/Diabetes Statistics/DiabetesStatistics.html 73 NetHealth. (1996). Team up for tight control in children. Eam11¥_2rasfice_Newsi_Ilune_11122611 [Online]- Available: http://www.diabetes.com/site/MISC/NFBODY.HTM NetHealth (1997). Teen girls risk eye damage by skipping injections to lose weight. ' Z§1_122111 [Online]. Available: http://www.diabetes.com/site/MISC/NFBODY.HTM Neumark-Sztainer, D., Story, M., Resnick, M. D., Garwick, A., & Blum, R. W. (1995). Body dissatisfaction and unhealthy weight-control practices among adolescents with and without chronic illness: A population-based study. ' ' ° (12). 1330-1335. [Online]. Avicenna-Medline Medlars UID 96082110. Neumark-Sztainer, D., Story, M., Toporoff, E., Cassuto, N., Resnick, M. D., & Blum, R. W. (1996). Psycho social predictors of binge eating and purging behaviors among adolescents with and without diabetes mellitus. lcnzna1_cf Adelescent_nealth1_121 289-296. Pender, N. J. (1996). ' ' ' DZEQLiCe (3rd ed., pp 33-49). Stamford: Apple & Lange. Perkins, K., Ferrari, N., Roses, A., Bessette, R., Williams, A., & Omar, H. (1997). You won't know unless you ask: the biopsychosocial interview for adolescents. Clinical Pediatrissl_21 79-86. Petersen, A. C. & Leffert, N. (1995). Developmental issues influencing guidelines for adolescent health research: A review. 1Qurnal_df_Adolescent_Health1_111 298- 305. Peveler, R. C., Fairburn C. G., Boller, I., & Dunger, D. (1992). Eating disorders in adolescents with IDDM: A controlled study. Diabetes_gace+_ii(10), 1356-1360. Rydall, A C., Rodin, G. M., Olmsted M. P., Devenyi, R. G., & Daneman, D. (1997). Disordered eating behavior and micro vascular complications in young women with insulin- dependent diabetes mellitus. Ihe_NeW_Engldnd_lQnInal_Qfi Medicine1_336(26). 1349'1354- Resnick, M. D., Bearman, P. S., Blum, R. W., Bauman, K. E., Harris, K. M., Jones, J., Tabor, J., Beuhring, T., sieving, R. E., Shew, M., Ireland, M., Bearinger, L. H., & Udry, J. R. (1997). Protecting adolescents from harm: Findings from the national longitudinal study on adolescent health. ' ' ' ' 213+ 823-832. Available: http:/www.ama-assn.org/sci- pubs/journals/most/recent/issues/jama/oc7240.htm 74 SAMHSA (Substance Abuse and Mental Health Services Administration), (September 22, 1997). New study on substance use among women in the United States released. [Online]. Available: http://www.health.org/gpower/ADULTSWHOCare/wom_study.htm Silverstein J. H. & Johnson, 8. (1994). Psycho social challenge of diabetes and the development of a continuum of care. Pediatric_Annalsl_23(6). 300-305- Smith, R. (1996). Th§_pa:ient1§_§IQI¥1 Boston: Little, Brown and Company. Snyder, M. & Mirr, M. (1995). Adxanced_nractice ' ° ' ' New York: Springer Publishing Company, Inc. Stolte, K. M. (1996). Wellness nursing diagnoses for adolescents. . - . - . Hellness1_Nurs1ng_d1agnos1s_for_health DIQmQLIQn1 pp.134-143. Lippincott-Raven Publ1shers. Suris, J. C., Parera, N., & Puig, C. (1996). Chronic illness and emotional distress in adolescence. Jcnrnai_cf Adelescent_flealth1_121 153-156. Thompson, C. (1996). Teenagers and eating disorders. [Online]. Available: http://www.mirror-mirror.org/teens.htm Weissberg-Benchell, J., Glascow, A. M., Tynan, W. D., Wirtz, P., Turek, J., & Ward, J. (1995). Adolescent d1abetes management and mismanagement. Diabeces_Care+_ia(10), 77-82. Wolman, C., Resnick, M. D., Harris, L. J., & Blum, R. W. (1994). Emotional well-being among adolescents w1th and without chronic conditions. JQDInd1_Q£_AdQl§§CBnI_H§dlIh1 1L 199-204 . Wysocki, T., Taylor, A., Hough, B., Linscheid, T., Yeates, K., & Naglieri, J. (1996). Deviat1on from developmentally appropriate self-care autonomy. Diabeces Carel_12(2). 119-125. 75 APPENDICES A Screening Protocol to Aid in the Identification of Adolescent Diabetic Females Who May Be Practicing Risky Health Care Behaviors Information letter for APN Information letter for parents Information letter for ADF Instructions for ecomap Example of ecomap Ecomap Questionnaire FRIENDS APPENDIX A Information letter for the APN Information letter for the APN The purpose of this screening protocol is elicit and assess information on individual adolescent diabetic females (ADF), between the ages of 11-15 years. This protocol is meant to be used as an assessment tool to aid the APN in identifying the “red flags” when the ADF sends them. In addition, it can be used to assess the risky behaviors that the adolescent may be participating in. Risky behaviors include: excessive weight control or exercise, adjustment of insulin as a means of weight loss or covering food intake, drinking and smoking. The protocol places emphasis on social support systems, body image, emotional well-being and stage of development. The protocol consists of the ADF filling out an ecomap, a questionnaire, and the APN assessing the ADF with the acronym FRIENDS at each visit. The ecomap, which includes a two generational genogram, is used to gain insight into the ADF's relationship with her family and other people, activities, and organizations. The ADF is asked to rank the factors outside the family, in order of importance to her. This will aid in the assessment of “connectedness” that the ADF feels towards her family and other sources. It is a sense of connectedness that research indicates is a protective factor in deterring risky behaviors. It is recommended that the APN assists the ADF in completing the tool the first time. The visual depiction of this tool should make evaluation less time consuming then the questionnaire. The questionnaire consists of 36 questions and focuses on the ADF's social support systems, stage of development, body image, and emotional well-being. It probes social support systems. It attempts to identify whether appropriate development tasks are being accomplished and if there is significant emotional distress in the adolescent. An open ended question is included to help the ADF focus, as well as allow her to identify areas where she may need help. The acronym FRIENDS will be placed in each chart and will remind the APN to assess each of these areas during every visit. F: (family and friends), R: (diabetic regimen and routine), I: (insulin and image), E: (exercise, education, and emotion), N: (nagging), D: (diet), 8: (smoking, substance abuse, and sexual activity). By evaluating each of these areas with each visit the APN may be able to identify “red flags” when the ADF sends them and effectively intervene. The target population for this protocol is all newly diagnosed or existing diabetic adolescents females between the ages of 11-15 years old. The criteria for administration of the protocol is the same for all ADFs. 76 The ecomap and the questionnaire should be administered initially then reviewed every six months for changes. If the ADF's HbA1c is >9% the tools should be reviewed as the APN deems necessary. If the APN, or the office staff is able to assist the ADF then arriving 20 minutes early should be sufficient. The adolescent should be provided a quiet, comfortable, and private place in which to complete both tools. The ADF should be encouraged to answer honestly and be assured that her answers will be kept confidential. 77 APPENDIX B Information letter for parents Information letter for parents Adolescence has been identified as one of the most difficult stages of development. The adolescent must accomplish certain tasks (i.e. independence from their parents, being accepted by their friends) in order to progress through this stage. Not being different and being accepted by their friends is important to any adolescent. This is one of the main reasons that having diabetes can be so difficult for a teenager. It makes them feel different and they don't want to be. Although this stage can be trying on the entire family, research has shown that adolescents, whose parents and families stay involved with their diabetes, have less complications and better outcomes then adolescents whose parents either don't care or feel that the teenager is old enough to take care of the diabetes themselves. Adolescence is a time of experimentation. Adolescents try to find out who they are. They often think that they are invincible and that nothing really bad could ever happen to them. This philosophy (which is normal) is one of the reasons that it is so difficult to make an adolescent see that some things that they are doing may be dangerous to their health. Our society sends the message that.“long and lean” is how a woman should look. This means dieting and exercise, but adolescents may take it to the extreme. Teenage girls who are diabetic are prone to being slightly heavier, so frequently they try to loose weight by dieting or exercising excessively, not taking their insulin, or using laxatives. These tactics can increase diabetic complications, be dangerous to their health, or worse. Other behaviors that may increase complications of diabetes are smoking, drinking and the use of drugs. Often teens, who are trying to become independent from their parents, won't let their parents know that they are participating in any of these “risky” behaviors. But, for the sake of their health, we must find out. It is sometimes easier for an adolescent to share this information with their health care provider. It is for this reason that we are going to ask your teen to take part in a screening protocol that may be helpful in identifying areas that are of concern to their health. As your teen's health care professional we will include you as often as possible. However, it is important that your teen feel that we are their health care provider, therefore anything they share will be kept confidential and only if your daughter gives her permission or if her behavior is life threatening will it be shared with you. This issue of teen confidentiality is very difficult for most parents to deal with, but in looking at the bigger picture if we are able to identify behaviors that may negatively impact your daughter's current and future health and change them, you will have a healthier teen, with fewer complications. We are here for you and your daughter, 78 please feel free to discuss any concerns you may have. The issue of confidentiality extends to you also. The screening protocol consists of two separate assessment tools that your daughter will be asked to complete. The ecomap is a diagram of your family and people, activities, and organizations that involve your family and your daughter. The questionnaire consists of 36 questions and assesses areas such as stage of development, body image, support from family and friends, and emotional well-being. These tools will be administered at the initial visit and approximately every six months, or as your health care provider deems appropriate for your daughter. It would be appreciated if you could have your daughter arrive for her appointment 20 minutes early on the days she is filling out the tools, if more time is needed your health care provider will let you know in advance. We understand that this is a major inconvenience, but the information that we obtain may decrease the diabetic complications or lessen their severity and make your daughter's future healthier. The following statistics are not meant to frighten you, they are meant to show you how serious diabetes can be. Short term complications of diabetes are extremely low or high blood sugar. If not controlled, either of these complications may result in hospitalization or possibly death. Long term complications can result in coronary heart disease, kidney problems or blurred vision and effect between 30-80% of diabetics. When diabetes is controlled the reduction in complications is truly significant. Research has shown that by consistently lowering blood sugar these complications can be reduced by as much as 50-80%. Research has also shown that greater than 50% of adolescents don't follow their diabetic regimen. If we are able to identify behaviors that may put your daughter's health in jeopardy and change them, while at the same time assessing how well she is able to follow her diabetic regimen, we may be able to help her make changes that will improve her health. It is difficult to know how much you should do for your daughter. Allow her to assume responsibility for her diabetes, but always make sure she knows you are interested, and there for her. Again, please feel free to contact us with any concerns. Thank you for your cooperation. 79 APPENDIX C Information letter for the adolescent Information letter for the adolescent Adolescence is a time for establishing independence. It is a time when both having friends and being accepted by those friends are very important. It is also a time that girls try to diet and get their body looking the way they want it to. They may do this in a variety of ways, some not very healthy. It is also a time that some adolescents start smoking, drinking, or taking drugs. For someone with diabetes these things can be far more dangerous than for someone who does not have diabetes, because it can effect their blood sugar and increase their chances of complications. This may not seem important now, but in a few short years you could already be starting to have some long term complications. Lots of famous people have diabetes and they are living long, healthy lives by controlling their blood sugar and decreasing their chances of complications. The secret is to treat your body well and control your sugar. We are going to ask you to participate in a screening protocol that will identify your strengths, and areas that you might be able to improve upon, to make a healthier you. You will be asked to complete two forms. The first is called an ecomap and the APN or someone in the office will assist you in completing it the first time, although there are instructions and an example of a completed ecomap that you may refer to. The ecomap is a diagram of everything that is important to you and your family. This diagram includes your family but is mostly about you. The second form is a questionnaire. It asks questions about your strengths, your perception of yourself, whether you are happy with how you look, if you would like to loose any weight, if you are trying to loose weight, how you are going about it, those types of questions. The last two questions asks you about goals you would like to accomplish, and if you need any help accomplishing them. Adolescence is a time of great change. Many adolescents have identified looking good and having friends as important, even more important then taking care of themselves. If that is the case for you, we would like to try and work with you on strategies that you can live with that would allow you to accomplish both. It is really important that you establish your independence, have your friends and take care of your diabetes. In order for us to work together, you must answer the questions honestly. Anything you say in our visits, and anything you reveal in the ecomap or questionnaire will be kept confidential. We will ncr share any information with your parents that you do not specifically say we can. The only exception to this is if you are doing something that is life threatening either to yourself or someone else. Then by law we must tell your parents. However, we will always let you know beficre we talk to your parents. 80 We would like to share some statistics with you. These statistics are not meant to frighten you, they are meant to show you how serious diabetes can be. Short term complications of diabetes are extremely low or high blood sugar. If not controlled, either of these complications may result in hospitalization or possibly death. Long term complications can result in coronary heart disease, kidney problems or blurred vision and effect between 30-80% of all diabetics. When diabetes is controlled the reduction in complications is truly significant. Research has shown that by consistently lowering blood sugar these complications can be reduced by as much as 50-80%. Those are impressive statistics. We would like to work with you to make you the healthiest you can be. We can not stress enough the importance of you being up front and honest. If you are doing something you know you shouldn't be, but everyone else is doing it, at least talk to us and tell us. Our goal is to work with you to be the person you want to be, and to do the things you want to do while keeping your diabetes reasonably controlled. We look forward to working with you. 81 APPENDIX D Instructions for completion of ecomap Instructions for completion of ecomap An ecomap is a diagram that you complete of things that are important to you and your family. Please refer to the example of a completed ecomap. The inside of the circle represents you and your family. The outside of the circle represents people, activities, and organizations that are important to you and your family. Inside the circle should include: 1. A diagram of your family, include parent(s), brother(s) and sister(s). 2. Pet(s) (optional). 3. Please use the symbols located in the key in the bottom left hand corner of the page when drawing you family. 4. When drawing your brother(s) and sister(s) please start with the oldest and go to the youngest. 5. Write the name and age of each individual in the appropriate box or circle. 6. Include yourself in what ever order you appear in the family. After your family diagram is complete: 1. Please refer to the same key (bottom left hand corner) for the relationship lines. 2. Decide what lines are the most appropriate to describe your relationship with each member of your family. 3. Draw those lines from you to that person. 4. You may also include relationships between other members in your family. For example if your parents are close you may indicate that. If siblings really don't get along you may indicate that. The drawing of your family inside the circle is called a genogram, it is your family tree. Outside the circle should include: 1. People, activities and organizations that are important to you (i.e. friends, sports, music, dance, school etc.). 2. People, activities and organizations that are important to your family (i.e. extended family, friends, work, church, community activities etc.). 82 After you have completed the outside of the circle: 1. 10. In the bottom right handed corner of the page you will find another key for the outside of the circle. Use these symbols to describe the connection of these people, activities and organizations to yourself and/or your family. These connections may be described as average, strong or stressful. If the people, activity or organization effects your entire family draw a line to the circle. If the people, activity or organization effects only you or another member of your family draw the appropriate symbol from that item to the appropriate person. Arrows (indicating energy) may also be used from any given person to an item. An arrow drawn from a person to an item would indicate that the person gives a lot of energy to that item. An arrow drawn from an item to a person would indicate that the person receives a lot of energy (or benefit) from that particular item. An arrow drawn both ways would indicate that the person gives and receives a great deal of energy from that item. Now go back and try to rank the items according to their importance to you, starting with (1) for the most important to you, (2) for the next most important, etc. The items do not need to be in any special order around the circle, nor do you need to go past 3 unless you wish to. This is your family, your life. The more details you add the more interesting it will bellllll 83 APPENDIX E Example of an Ecomap Work Softball I g . Example of an Ecomap Church. Grandparents Work College School . i 0 Job Friends - l Boyfriend - 3 Phone Health Care I I ' School Track - 2 KEY (inside circle) KEY (outside circle) Connection to act, peo, org Male = D Average = Female = 0 Strong: III-III.- Relationship lines: Stressful = CIOSC= cocoooooo Tense = — Flow of energy = (I) 84 School APPENDIX F Ecomap KEY (inside circle) Male: [:| Female: 0 Relationship lines: CIOSC= ooooooooo Tense = — Ecomap 85 KEY (outside circle) Connection to act, peo, org Average = Strong: Ill-IIIII Stressful = Flow of energy = (I) APPENDIX G Questionnaire Please answer the following questions. You may add additional comments. All answers will be kept confidential, so please answer honestly. 1. 10. 11. 12. How often do you check your blood sugars? A) Daily (1-4 times) C) Only when I feel sick B) Several times a week D) Not often I almost always eat (circle all that apply). A) Breakfast B) Lunch C) Dinner D) Snacks Who is primarily responsible for making these meals (mom, dad, brother, sister, me)? Breakfast Lunch Dinner Snacks ' My parent(s) are home when I leave for school in the morning. Yes No My parent(s) are home when I get home from school. Yes No My parent(s) are home for dinner. Yes No Do you ever adjust your own insulin because of over or under eating? Yes No What type of exercise do you do daily? How many minutes or hours of exercise do you do daily? How many times in the last year have you been hospitalized because of your diabetes A) O B) 1-2 C) 3-4 D) more than 4 times Who do you feel is primarily responsible for keeping your diabetes under control? What do you do to take care of your diabetes on a daily basis (insulin: dose & time, checking blood sugars: time, etc.)? 86 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. Most of my close friends know I am a diabetic. Yes No How do you handle going out with your friends or when you are at a friends house when it comes to eating? Please complete the following sentence. The biggest problem with having diabetes is... I would like to lose weight? Yes No If yes, I would like to lose... A) 1-5 lbs. C) 11-15 lbs. B) 6-10 lbs. D) more than 16 lbs. I feel that an okay way to loose weight is by ... A) Cutting calories D) vomiting B) exercising a lot E) taking less insulin C) laxatives I am currently trying to loose weight by Basically I feel that my family is there for me. A) Always C) Occasionally B) Most of the time ' D) Never My family's greatest strength is How much freedom do you feel you parents give you? Please rank on a scale of 1-10 1 5 10 no freedom right amount total freedom 87 23. 24. 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. Are you treated any differently in your family because of your diabetes? Yes No If so, how? Would you describe yourself as: A) Someone who looks on the bright side of a situation? 8) Someone who looks at the downside of a situation? What is your greatest strength? Would you rather spend time. A) Alone C) With your friend(s) B) With your family How many friends do you have that you feel you can confide in? A) O B) 1-2 C) 2-5 D) More than 5 Please rank this statement on a scale of 1-10. I am accepted by my friends. 1 5 10 not accepted/accepted most of the time/totally accepted Please rank this statement. I feel that I am accepted by most of the kids at school. 1 5 10 not accepted/accepted most of the time/totally accepted I like school. Yes No My grade point average is Please list your activities, both during and after school. Please complete this sentence. My future is Do you smoke? A) Never C) Less than once a week B) Rarely D) More than once a week 88 35. 36. What short (within a month) or long term (within 6-12 months) goals would you like to accomplish? How could your doctor or nurse practitioner help you accomplish these goals? 89 APPENDIX H FRIENDS FRIENDS Family (how are things going at home) Friends (# close friends, do friends know of diabetes, how have they responded) Regime (how is it fitting into schedule, any problems) Routine (three meals a day with snacks, sleep pattern, parent home to make dinner) Insulin (regular dose, adjust own dose, when) Image (are you happy with how you look, trying to loose weight, how much, how) Exercise (how much, how often, what type) Education (how are things at school) Emotion (how do you feel, how is everything going in general, any problems) Nagging (who is responsible for your diabetes, you/parents) Diet (any problems when eating out with friends or diet in general) Substance abuse (alcohol, drugs, smoking) Sexual Activity (active, contraceptives) 90