TYPE 1 DIABETES is one of the most common

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1 Family Influence on Self-Care, Quality of Life, and Metabolic Control in School-Age Children and Adolescents with Type 1 Diabetes Melissa Spezia Faulkner, DSN, RN Lu-I Chang, MS This study explored the influence of family behaviors on self-care, quality of life (QoL), and metabolic control in school-age children and adolescents with type 1 diabetes. Ninety-nine participants were recruited in the midsouth from a health science center and an affiliated diabetes camp. Warm and caring family behaviors predicted self-care behaviors and aspects of QoL for the participants. African American school-age children and adolescents had more worries related to diabetes and had poorer metabolic control than Caucasians. Nursing implications included emphasizing open family communication and providing emotional support for diabetes management to promote developmentally appropriate levels of self-care and QoL. n 2007 Elsevier Inc. All rights reserved. TYPE 1 DIABETES is one of the most common pediatric chronic conditions and has potentially life-threatening sequelae (Silink, 2002). The most common age of onset is between 10 and 14 years, and the incidence is increasing worldwide (Karvonen et al., 2000). The extent of family cooperation and interaction necessary for appropriate daily management of type 1 diabetes distinguishes it from other pediatric chronic illnesses (Burroughs, 1993). Optimal control of glucose levels requires a constant balance of dietary practices, exercise behaviors, and insulin dose adjustments for youths who are growing and developing. Numerous studies of youths with type 1 diabetes and their families have addressed family behavior, self-care practice, metabolic control of glucose levels, and quality of life (QoL) issues. However, these factors have not been explored collectively. The purpose of this study was to assess the associations among demographic variables, family behaviors, self-care, QoL, and metabolic control of glucose levels. Specific study questions were as follows: 1. Do age, sex, race, parental education, family behavior, and duration of diabetes predict participation in self-care activities? 2. Do age, sex, race, parental education, family behavior, duration of diabetes, and self-care participation predict QoL or metabolic control of glucose levels? 3. Are there differences in self-care participation, QoL, or metabolic control based on sex or race? 4. Is there a relationship between QoL and metabolic control of glucose levels? BACKGROUND LITERATURE The developmental changes that occur as school-age children with type 1 diabetes grow into adolescence necessitate frequent reevaluation of their therapeutic needs. Individual differences in caloric intake related to growth spurts and participation in sports, onset of menses in female adolescents, and adolescent mood swings are all factors that families must consider in managing care and encouraging self-care by these youths. Self-care is an important behavior for persons who are living with, and adapting to, the diagnosis of diabetes. For children and adolescents, having diabetes, which is a chronic condition, requires many adjustments, such as adhering to treatment From the University of Illinois at Chicago, College of Nursing, Department of Medical-Surgical Nursing, Chicago, IL. Address correspondence and reprint requests to Melissa Spezia Faulkner, DSN, RN, University of Illinois at Chicago, College of Nursing, Department of Medical-Surgical Nursing, 845 South Damen Avenue, MC 802, Chicago, IL melissaf@uic.edu /$ - see front matter n 2007 Elsevier Inc. All rights reserved. doi: /j.pedn Journal of Pediatric Nursing, Vol 22, No 1 (February),

2 60 FAULKNER AND CHANG Figure 1. Family and individual factors influencing self-care, QoL, and metabolic control in school-age children and adolescents with type 1 diabetes (Data from Orem, 1995). regimens and maintaining adequate metabolic control. Orem (1995) stated that bself-care is a human regulatory function that individuals must, with deliberation, perform for themselves or have performed for them (dependent care)... to keep physical and psychic functioning and development within norms compatible with conditions essential for lifeq (p. 172). Orem s theory guided this investigation, wherein school-age children and adolescents with diabetes were learning to balance the responsibility of their daily care with the dependent care provided by family members. According to Orem, basic conditioning factors include internal and external influences that affect a person s abilities for self-care, such as age, sex, sociocultural orientation, health status, and family system. These basic conditioning factors and one s self-care participation may ultimately affect an individual s health outcomes, including the perception of personal QoL and the attainment of metabolic control. The study framework is depicted in Figure 1. An overview of existing family-related research on children and adolescents with diabetes, including the effects of family behaviors on self-care, QoL, and metabolic control, follows. Studies focusing on family influence on patient adherence to diabetes treatment regimens, adjustment, and metabolic control use primarily social learning theory or family systems theory (Hanson, De Guire, Schinkel, Henggeler, & Burghen, 1992). Social learning theory posits that family behaviors, such as parenting style, lifestyle practices, and communication, influence both physical and psychosocial maturation of the family s children. Family systems theory proposes that dynamic family interrelationships contribute to both health outcomes and adaptation of youths to their illnessrelated experiences. For adolescents with diabetes, positive family behaviors have been associated with adherence to therapeutic treatment regimens (Wysocki et al., 1997). Studies have focused on a shared family management style for ensuring the successful application of a treatment plan for a child with diabetes and on specific family strategies for encouraging self-care behaviors in school-age children (Faulkner, 1996; Gallo, 1990). Strategies that influenced self-care included reminding and confirming that the daily routine of insulin, diet, and blood testing is maintained (Faulkner, 1996). Attendance at a special camp for youths with diabetes was a significant predictor of self-care activity and metabolic control of glucose level (Saucier & Clark, 1993). Furthermore, diabetes camp attendance and mothers involvement in reinforcing injection technique, record keeping, and food selection facilitated learning about diabetes and self-care by school-age children (Faulkner, 1996). Specific strategies for self-care participation included allowing healthy dietary choices and setting guidelines for days and times to perform self-injection. By having choices about their diet and when to administer injections, children had a sense of control over their diabetes management. They were able to experience the results of their decisions by observing changes in blood glucose levels. Gradual increases in the level of self-care participation (based on shared responsibilities with parents), as a transition from dependence to independence (Christian, D Auria, & Fox, 1999), have been described in interviews with adolescents who have diabetes. This balance in shared

3 SCHOOL-AGE CHILDREN AND ADOLESCENTS WITH TYPE 1 DIABETES 61 responsibilities for care is particularly important during adolescents transitions to more individualized and autonomous lifestyle practices. Williams (2000) found that the majority of female adolescents incorporated diabetes into their social identities, openly telling people about their condition and willingly treating themselves in public settings. Male adolescents were not as open, refraining from telling others about their diabetes and keeping it separate from their social identity. Thus, male adolescents may be less overt in their self-care management. Research conducted by Wysocki et al. (1996) emphasized developmentally appropriate self-care autonomy, which includes cognitive and emotional maturity in assuming responsibility for personal diabetes care. Findings reveal that children with excessive self-care autonomy (described as no parental supervision or limited parental supervision) have less favorable treatment adherence, less diabetes knowledge, higher hospitalization rates, and poorer glycemic control. In particular, older adolescents with diabetes have been reported to mismanage their disease more often than younger adolescents (Weissberg-Benchell et al., 1995), thus making parental or family involvement crucial during this stage of development. Shared goals within a particular parent/child dyad are prerequisites to successful diabetes management. Adolescents also have identified that continual feedback of factual information is necessary to gain independence in their own care (Christian et al., 1999). Counseling families during this time of adolescents increasing independence is necessary to fine-tune management approaches that allow opportunities for a balance in psychomotor and decision-making skill acquisition, autonomy, and feedback. Studies have focused on the perceived benefits of, and barriers to, diabetes self-management among adolescents. Adolescents perceived that, through their self-management, their parents are relieved of responsibility and worry. However, these teens also felt that the burden of personal responsibility was a barrier to self-management (Hanna & Guthrie, 2000). For the adolescents, the benefits of diabetes self-management were gaining confidence in their abilities to care for self, achieving greater freedom, and gaining approval from family members to perform self-care when needed. In interviews with teens and their parents, directive guidance (behavior to aid performance) and tangible (physical) assistance were interpreted as being helpful to promoting diabetes management responsibility in teens. However, being too forceful was seen as a potential barrier to learning diabetes management and as not being helpful. Thus, an intricate balance of responsibility among parents and youths is required as a means of encouraging self-management (Hanna & Guthrie, 2001). Limited research on children and adolescents with type 1 diabetes has focused on the consequences of their self-care participation. In available studies, the involvement of children and adolescents in their own diabetes care has been associated with several positive outcomes, including metabolic control, perceived health status, adjustment, global self-worth, and perception of coping strategies that were viewed as effective (Schilling, Grey, & Knafl, 2002). Although adjustment and global self-worth are concepts closely related to QoL, no studies exploring the influence of self-care on perceptions of QoL for children or adolescents with diabetes were found. Of these various outcomes in diabetes care, metabolic control is the most common criterion for evaluating self-care. Glycosylated hemoglobin (HbA 1c ) is a standard measure of metabolic control in patients with diabetes and reflects average glucose levels over the prior 2 3 months, with higher levels reflecting poorer control. Although self-care has been related to better metabolic control of youths with diabetes in some studies (Burroughs, 1993; Frey & Fox, 1990), others do not support a significant relationship between these two variables (Grey, Cameron, & Thurber, 1991; Saucier & Clark, 1993). Although Saucier and Clark did not find a relationship between self-care and metabolic control, their study found racial variation in metabolic control and in the level of self-care performed by Caucasian and African American children. Caucasian children had higher levels of self-care and lower HbA 1c than African American children. Other sociodemographic factors, such as income or education, were not included. Few studies on the effects of family behavior (including their management and communication styles) on QoL for youths with diabetes exist. Adolescents with diabetes who had higher life satisfaction and fewer worries about their disease also perceived family behavior as warm and caring (Grey, Boland, Yu, Sullivan-Bolyai, & Tamborlane, 1998). The Hvidore Study Group on Childhood Diabetes (2001) is a large multinational

4 62 FAULKNER AND CHANG study participated in by 2,101 adolescents (10 18 years) with type 1 diabetes who were gathered from 21 centers across 17 countries in Europe, Asia, and North America to study the effects of glycemic control on QoL. However, the possible effects of family interactions on children s QoL were also explored. In contrast to the study by Grey et al., in this study, family variables were not associated with adolescents QoL. There was little or no relationship between measures of the adolescents QoL and their parents perception of family burden. Family structure also had no significant effect on parental burden scores or on adolescents views on QoL. Although illness-specific family behavior and family functioning (i.e., family cohesion, communication, and adaptability) have been associated with metabolic control in some studies (Burroughs, 1993; Grey et al., 1998; Jacobson et al., 1994; McKelvey et al., 1993; Wysocki, 1993), they have not been associated with metabolic control in others (Kovacs, Kass, Schnell, Goldston, & Marsh, 1989; Wysocki, Greco, Harris, Bubb, & White, 2001). Specifically, positive communication, clear differentiation of family roles, and fewer conflicts have been related to better control (Wysocki, 1993). Negative parental behavior, such as nagging to encourage adherence, was associated with poorer metabolic control (Burroughs, 1993). With short duration of diabetes (approximately 2 years), low marital satisfaction or high family rigidity was related to higher HbA 1c (Hanson, Henggeler, Harris, Burghen, & Moore, 1989). Conflicting results regarding the association of QoL with metabolic control of glucose levels in youths with diabetes have been reported in the literature. Ingersoll and Marrero (1991) modified the original Diabetes Quality of Life Instrument from the Diabetes Control and Complications Trial (DCCT) for use with adolescents, but did not find an association between metabolic control and QoL. Additionally, Grey et al. (1998) did not find associations between age, duration of diabetes, or metabolic control and QoL. However, in other studies, better metabolic control was associated with higher levels of QoL (Guttmann-Bauman, Flaherty, Strugger, & McEvoy, 1998; Hvidore Study Group on Childhood Diabetes, 2001). The Hvidore Study Group on Childhood Diabetes (2001) is the largest study to date supporting the correlation of metabolic control and QoL in adolescents with type 1 diabetes. In this study, adolescent QoL scores in an ethnic minority group (which was defined as a minority group different from the predominant population of the community by racial or cultural background; n = 161) were poorer for impact of diabetes, worries, and health perception. The Hvidore study supported earlier findings that, compared to male adolescents, female adolescents have greater impact and worries and lower life satisfaction and health perception (Eiser et al., 1992; Grey et al., 1998; Hvidore Study Group on Childhood Diabetes, 2001; Ingersoll & Marrero, 1991). METHODS Design, Sample, and Setting A descriptive correlational study design was used to explore the study aims. The convenience sample included school-age children and adolescents from 10 to 18 years who had been diagnosed with type 1 diabetes. Participants were recruited in the midsouth from a health science center and an affiliated diabetes camp. The inclusion criteria required participants to have diabetes for at least 1 year and excluded those who were in the bhoneymoon phaseq of diagnosis, known as the initial period of blood glucose and insulin adjustment. All participants also had to be within 1 year of appropriate grade in school for age to control for major cognitive delays. School-age children and adolescents were excluded if their diabetes was secondary to other conditions or associated treatments, including cystic fibrosis or cancer. Children and adolescents on pump therapy or multiple injections, including a wide range of insulin regimens, were included. Measures The measures used in the study included a parental demographic data sheet, the Diabetes Family Behavior Scale (DFBS; McKelvey et al., 1993), the Self-Care Questionnaire (SCQ; Saucier & Clark, 1993), and the Diabetes Quality of Life for Youth Instrument (DQOL; Ingersoll & Marrero, 1991). The parental demographic data sheet included information on the child s or adolescent s date of birth, sex, race, date of diabetes diagnosis (month and year), grade in school, and the mother s and father s education and income (if both parents were living in the home). Family behavior was measured by collecting data from the child or adolescent using the DFBS (McKelvey et al., 1993). The DFBS is a 47-item

5 SCHOOL-AGE CHILDREN AND ADOLESCENTS WITH TYPE 1 DIABETES 63 five-point scale designed to measure the child s or the adolescent s perspective of diabetes-specific family support (1 = all of the time to 5 = never). Reverse scoring is used for 29 of 47 items, so that higher scores represent a greater degree of supportive family behaviors. The DFBS consists of two separate subscales (the guidance control subscale and the warmth caring subscale), each comprising 15 separate items of the total scale. Thus, individual scores are obtained for the total 47-item DFBS, the 15-item guidance control subscale, and the 15-item warmth caring subscale. The remaining 17 items, which are not included in either the guidance control subscale or the warmth caring subscale, do not comprise a separate subscale and are computed as part of the total 47-item scale. Cronbach s a coefficients are acceptable for the total scale (.86), the guidance control subscale (.81), and the warmth caring subscale (.79). Content validity for the DFBS was established from pilot interviews that focused on children s and adolescents concerns related to family influence on diabetes care. Self-care participation information provided by the children or the adolescents was obtained using the SCQ developed by Saucier and Clark (1993). The SCQ is a 20-item four-point scale used to measure the youths frequency of involvement in self-care activities for diabetes management (1 = never to 4 = always). Content validity was established from published literature on diabetes care and was reviewed by a panel of experts (i.e., a certified diabetes nurse educator, a pediatric endocrinologist, and a statistician). The Cronbach s a coefficient for the total scale was.78. Although the instrument was developed prior to the current trend of an increasing number of youths having their diabetes managed with pump therapy, the questionnaire items remain relevant to basic diabetes care, including blood glucose checks, dietary and exercise requirements, insulin administration, and recognition of hypoglycemia and hyperglycemia. Diabetes-specific QoL was measured using the DQOL (Ingersoll & Marrero, 1991). The DQOL is a modification of the Diabetes Quality of Life Instrument developed for the landmark DCCT. It is composed of a 17-item diabetes life satisfaction subscale, a 23-item disease impact subscale, and an 11-item disease-related worries subscale. Each item is scored on a scale of 1 5 (1 = never or very unsatisfied to 5 = all of the time or very satisfied). Cronbach s a coefficients for the three subscales of life satisfaction, impact of diabetes, and worries about diabetes were.85,.83, and.82, respectively. Content validity was established by independent reviews by a pediatric diabetologist, a nurse practitioner, a social worker, and an educational psychologist, all of whom specialized in pediatric diabetes. The DQOL has been used extensively in both national and international studies of youths with diabetes. The most recent HbA 1c value, a standard measure of glycemic control over the prior 90 days, was taken from available clinic records kept at the pediatric diabetes clinic. These HbA 1c values were all obtained at the time of data collection or up to 3 months following data collection, with the majority of values produced using the Abbott IMx assay method (Abbott, Abbott Park, IL) for quantitative measurement of whole blood. A small percentage of HbA 1c was analyzed at other outpatient laboratories because patients had various managed care plans. Since 1996, the National Glycohemoglobin Standardization Program (NGSP) has certified laboratories to report DCCT traceable assay results with betweenlaboratory coefficients of variation of b5%. NGSP certification allows for valid and reliable comparisons of HbA 1c across laboratories (Little et al., 2001). Procedures Following approval of the university s and hospital s institutional review boards, participants were recruited either from a pediatric diabetes clinic of a children s hospital affiliated with a health science center located in the midsouth or from a nearby summer diabetes camp. Most of the participants recruited from the camp received diabetes care at the same clinic as the rest of the Table 1. Descriptive Statistics (N = 99) Variable n M (SD) Range Sex Male 55 Female 44 Race African American 23 Caucasian 74 Data missing 2 Age (years) (2.7) Duration of diabetes (years) (3.5) 1 18 Father s educational level (years) (2.1) 8 20 Mother s educational level (years) (2.1) 8 18 HbA1 c (%) (1.8)

6 64 FAULKNER AND CHANG Table 2. Correlation Matrix for Interval Level Variables Entered Into Regression Analyses Variable Age Father s Education Mother s Education Total DFBS Guidance Control Subscale Warmth Caring Subscale Duration of Diabetes Self-Care Self-care y.07.25y HbA 1c.09.24y Impact subscale y.22.59z Worries subscale y.17.31y Life satisfaction subscale y p V.05. yp V.01. zp V sample. Recruitment was initiated by either the pediatric endocrinologist or the staff nurse in the clinic or during camp orientation. If families were interested, the researchers provided a detailed explanation of the study purposes and procedures. Both parental permission and child assent were then obtained. Parents completed the demographic data sheet either during a routine office visit or when bringing their child to camp. Children and adolescents who were recruited during a routine office visit completed paper-and-pencil questionnaires at the end of their visit. Those participants who were recruited during camp orientation completed their questionnaires all on the same day during the 1-week camp experience. Each participant was given a packet of questionnaires with instructions for completion. Participants then read and completed the questionnaires independently. The research staff observed the participants completing the questionnaires to ensure that responses were self-determined. HbA 1c values were obtained from clinic records during clinic visit or, for those recruited from the camp, during their next clinic visit. Data Analysis Data were entered into a Microsoft Excel spreadsheet (Microsoft, Redmond, WA) and checked by two data entry personnel for accuracy. Data analyses included descriptive statistics, independent t tests, Pearson s correlations, and stepwise regression analyses for answering research questions. The statistical software program used for analyses of the data was the SAS System (SAS Institute, Cary, NC) for mainframe computers (Schlotzhauer & Littell, 1991). The general linear model procedure in SAS was used to determine correlations among interval level study variables before computing for regression analyses. All tests of significance were determined at an a level of.05. Tables reflect the available sample size for specific variables because there were missing values for some analyses. Missing values are attributed to blanks on some of the subscales of the DFBS and the Diabetes Quality of Life Instrument. RESULTS The sample consisted of 99 youths with type 1 diabetes (Table 1). There were 47 participants recruited from the clinic site and 52 from the diabetes camp. There was no difference in mean age for the two groups. A power analysis was conducted to determine the total sample size before data collection. The estimated sample size needed was 87, using a one-sample case with standardized effect size of.30, a power of.80, and an a coefficient of.05 (Hinkle, Wiersma, & Jurs, 1988). Only five families refused to participate; four did not have time to wait longer after their clinic appointment and one did not want the child to possibly be introduced to worrying about his diabetes. Table 3. Sex Differences in Self-Care, QoL, and Metabolic Control Variable n M (SD) df t p Self-care Male (7.3) Female (7.7) Impact of diabetes Male (11.3) Female (14.5) Worries Male (7.6) Female (9.0) Life satisfaction Male (15.4) Female (13.7) HbA 1c (%) Male (1.6) Female (1.9)

7 SCHOOL-AGE CHILDREN AND ADOLESCENTS WITH TYPE 1 DIABETES 65 Table 4. Racial Differences in Self-Care, QoL, and Metabolic Control Variable n M (SD) df t p Self-care African (8.1) American Caucasian (7.4) Impact of diabetes African (15.7) y.06 American Caucasian (11.3) Worries African (10.8) y.044 American Caucasian (6.7) Life satisfaction African (14.3) American Caucasian (15.1) HbA 1c (%) African (2.5) y.044 American Caucasian (1.4) 4p V.05. yfor comparisons of impact of diabetes, worries, and HbA 1c, two-sample t tests with unequal variances were used for the analyses. Research question 1 asked if age, sex, race, parental education, family behavior, and duration of diabetes influenced participation in self-care activities. Research question 2 asked if these same variables, as well as self-care participation, influenced QoL or metabolic control of glucose levels. Family behavior measures included the total DFBS score and separate scores for the guidance control subscale and the warmth caring subscale. QoL measures included the subscale scores of worries, impact, and life satisfaction. Stepwise regression analyses were used to answer research questions 1 and 2. Table 2 depicts the correlation matrix for the independent and dependent interval level variables that were used in regression analyses. Because sex and race are nominal level variables, associated differences in self-care, QoL, and metabolic control were determined using independent t tests and are presented in Tables 3 and 4. Only one significant predictor variable remained in each of the regression models for the outcome variables self-care and QoL (i.e., impact of diabetes, worries about diabetes, and life satisfaction) (Table 5). This single predictor was the score on the warmth caring subscale of the DFBS (McKelvey et al., 1993). Thus, those families that exhibited more positive emotional support and communication had children and adolescents who had higher levels of self-care participation, experienced a lower impact of diabetes, had fewer worries about diabetes, and experienced greater life satisfaction. There were fewer school absences, fewer interruptions in social relationships, and decreased tendencies for overprotection by parents in families that provided a warm and nurturing home environment. The father s educational level was the only significant predictor of HbA 1c (Table 5). The youths whose fathers had higher educational levels tended to exhibit better glucose control. Although caring behaviors of family members and the father s educational level were highly significant predictors ( p values ranged from.008 to.002), the estimate of variance or R 2 value for the abovementioned outcome variables was small, ranging from.08 to.12. Age, sex, race, duration of diabetes, and mother s educational level were not significant predictors of self-care, QoL, or metabolic control. Research question 3 explored racial and sex differences in self-care, QoL, and metabolic control. Independent t tests indicated that there were no sex differences in self-care, QoL, or metabolic control. However, separate independent t tests for unequal variances revealed that African American youths reported more worries about diabetes on the DQOL instrument and had higher HbA 1c (and thus poorer glucose control) than Caucasian youths (Table 4). These findings should be interpreted cautiously because there were unequal numbers in the groups and there was lack of homogeneity in the variances Table 5. Regression Analysis of Predictors of Self-Care, QoL, and Metabolic Control Dependent Variable Explanatory Variable n b SE R 2 p Self-care WC Impact of diabetes WC Worries WC Life satisfaction WC HbA1 c Father s education Note. WC = Warmth caring family behavior subscale. 4p V.05.

8 66 FAULKNER AND CHANG of the mean scores for worries and HbA 1c.For example, data from the worries subscale and for HbA 1c were available on 23 and 17 African American subjects, respectively. In comparison, data from the worries subscale and for HbA 1c were obtained from 73 and 66 Caucasian subjects, respectively. Additionally, a larger standard deviation existed with the values for worries and HbA 1c collected from African American versus Caucasian youths. This lack of homogeneity of variances is reflected by differing degrees of freedom presented in Table 4. Research question 4 asked whether there was a relationship between QoL (i.e., impact, worries, and life satisfaction) and metabolic control of glucose levels for the entire study sample. Using Pearson s correlations, the impact of diabetes was positively associated with HbA 1c and indicated that those with poor metabolic control also experienced greater ill effects related to diabetes (r =.23, p b.05). These effects included such perceptions as feelings of being physically ill, limitations on social and school activities with peers, parental overprotection, and disruptions in sleep, dietary, and exercise behaviors. There was only a trend toward greater worries associated with higher HbA 1c (r =.21, p =.06), and there was no linkage between metabolic control and life satisfaction. DISCUSSION Warm and caring family behaviors were found to be the most influential factors for self-care participation by the youths with type 1 diabetes, and they also contributed to the youths perceptions of fewer worries, a lower impact of diabetes, and greater life satisfaction. The positive effects of nurturing family relationships on adherence to therapeutic regimes are consistent with earlier studies (Hanson et al., 1992; Wysocki et al., 1997). Limited research has focused on the effects of family perceptions, interactions, or diabetes management on a child s or an adolescent s perceptions of his or her own QoL. The Hvidore Study Group on Childhood Diabetes (2001) did not find parents views of family burden and adolescents perceptions of QoL to be related. However, the children and adolescents in this study indicated that families influenced their QoL, revealing that caring family behaviors were associated with fewer worries about the disease and greater life satisfaction. When their families allowed open communication, provided assistance with their diabetes as needed, and encouraged them to remain involved in peer activities, there was a sense of enhanced QoL. Grey et al. (1998) also found that higher life satisfaction for teens with diabetes was related to caring behaviors, as measured by the DFBS. Based on the basic conditioning factors as described in Orem s theory of self-care, proposed predictions among demographic variables such as age, sex, race, parental education, duration of diabetes with self-care, and QoL were not supported by the findings of this study. The only conditioning factor from Orem s theory that contributed to the self-care practices of youths with diabetes was the family system, which was represented by warm and caring family behaviors. Interestingly, the guidance control subscale of the DFBS, which measures predominantly the technical aspects of managing diabetes, did not contribute to self-care, QoL, or metabolic control for these teens. In a previous study using a different sample of adolescents with type 1 diabetes, one of the authors of this study found that female adolescents had lower perceptions of life satisfaction as a measure of QoL than their male counterparts (Faulkner, 2003). This finding is consistent with the work of other researchers (Eiser et al., 1992; Grey et al., 1998; Hvidore Study Group on Childhood Diabetes, 2001; Ingersoll & Marrero, 1991). In addition to attaining a positive sense of one s QoL, an ultimate outcome for all youths with diabetes is the achievement of metabolic control of glucose levels, thereby minimizing risks for later cardiovascular, renal, neurological, or retinal complications. This investigation found that a higher educational level of the father was associated with better glucose control. The mean educational level for fathers was 13.8 F 2.1 SD and for mothers was 13.9 F 2.1 SD. One explanation for this association may be that the father s educational level was a proxy for income, whereas the mother s educational level was not. Thus, those families with more financial resources may have been better able to furnish the necessary diabetes supplies for blood glucose monitoring and intensive insulin therapy. One limitation of this study was the absence of data on the exact type of insulin therapy used by the children and teens (i.e., conventional therapy, multiple-dose injections, or pump therapy) and the income level of the parents. For example, those children or adolescents who had additional resources for managing their diabetes, particularly those receiving pump therapy, may have had better metabolic control than those on multiple injections

9 SCHOOL-AGE CHILDREN AND ADOLESCENTS WITH TYPE 1 DIABETES 67 per day. Because the findings indicated that those with better metabolic control experienced less impact from having diabetes, knowing about parental income and whether pump therapy was being used could help to further explain factors that affected glycemic control and QoL. Limited data exploring disparities related to diabetes outcomes in minority youth populations with type 1 diabetes are available. The African American youths in this study had more worries and poorer metabolic control than the Caucasian youths. Although the sample for African American participants was small in this study, the higher HbA 1c values in this group were similar to results reported in earlier studies implicating risks for glucose control in minority children (Arfken, Reno, Santiago, & Klein, 1998; Chalew et al., 2000; Delamater, Albrecht, Postellon, & Gutai, 1991; Faulkner, 2003; Saucier & Clark, 1993). IMPLICATIONS The increasing number of youths being diagnosed with type 1 diabetes (Karvonen et al., 2000) presents a concern that more of these children and adolescents will be receiving care at primary care clinics in both urban and rural settings, rather than predominantly in pediatric subspecialty clinics. The challenges of managing and monitoring blood glucose levels for children, particularly as they grow to adolescence, require an understanding of the delicate balance of developmental struggles and family interactions. This investigation illuminates the potential health disparity of poorer metabolic control and worries related to having diabetes, and the future complications in African American children and adolescents. Future research should continue to address the possibility of barriers to optimal glucose control in minority youths. Because poorer glucose control was associated with a negative impact of diabetes for the entire study sample, the priority for diabetes management for children or adolescents and their families is to target individual strategies for improving shared responsibilities in daily routines for insulin administration, diet, and exercise. Nursing assessments during routine appointments need to focus on individual family communication and diabetes management styles to determine the concerns of parents and of their children or adolescents. Separate interviews may be necessary to allow parents and their children to explore diabetes management options for their unique family situation and potential solutions. Exploring viable choices in insulin administration, dietary variation, and exercise routines is a necessary component of self-care for each child within his or her own family. For some individuals who demonstrate developmentally appropriate self-care autonomy, these choices may include the transition to insulin pump therapy for better glucose control. Dietary selections need to incorporate food preferences based on cultural and family traditions, with limitations on the frequency and amount of certain foods that may have high-fat and high-carbohydrate contents. Daily exercise practices that are supported and encouraged by key family members should be identified by careful discussions with the child or adolescent and knowledge of available home-based and community resources. The use of diabetes support groups specific to the developmental needs of school-age children or adolescents can be beneficial to some families that are striving to learn how best to manage and promote self-care involvement and decision making. Although such strategy is useful, current demands on families to balance complex responsibilities may preclude their participation in traditional support groups. More research is needed to explore alternative resources and to encourage developmentally appropriate, culturally specific, and individualized diabetes family management. Such resources may include the development and evaluation of webbased programs based on focus group inputs from families and on health care provider feedback to questions related to diabetes management. Ultimately, nursing care that strengthens family processes and communication can provide a firm foundation for children and adolescents on how to make the best decisions to succeed in meeting blood glucose targets, thereby decreasing the occurrence of complications and enhancing QoL. Arfken, C. L., Reno, P. L., Santiago, J. V., & Klein, R. (1998). Development of proliferative diabetic retinopathy in African- Americans and whites with type 1 diabetes. Diabetes Care, 21, REFERENCES Burroughs, T. E. (1993). The relationship among six psychosocial domains, age, health care adherence, and metabolic control in adolescents with IDDM. Diabetes Educator, 19,

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