The diabetes social support questionnaire-family version: evaluating adolescents' diabetes-specific support from family members

OBJECTIVE: To develop and evaluate the Diabetes Social Support Questionnaire-Family Version (DSSQ-Family) for adolescents with type 1 diabetes. METHODS: Normative and individualized approaches to scoring were examined. Also examined were associations between diabetes-specific family support and adolescents' age, disease duration, gender, emotional support from family and friends, and treatment adherence. The most supportive family behaviors were identified as well. Adolescents (n = 74) rated 58 DSSQ-Family behaviors on their supportiveness and frequency and completed measures of emotional support from family and friends and treatment adherence. After eliminating nonsupportive items, the Total DSSQ-Family and five areas of diabetes care (insulin, blood testing, meals, exercise, emotions) were scored for frequency (normative approach) and frequency x support (individualized approach). The upper quartile of the DSSQ-Family items was identified as most supportive. RESULTS: Scores from the DSSQ-Family had high internal consistency. Higher frequency and individualized ratings were related to younger adolescent age and to more family emotional support and cohesion, but not to friend support or family conflict (in general). The individualized ratings were significant predictors of adolescents' adherence, even when controlling for age and general levels of family support. The most supportive family behaviors reflected emotional support for diabetes. CONCLUSIONS: The DSSQ-Family is a useful clinical and research tool for measuring adolescents' perceptions of diabetes-specific family support. Future interventions should stress family support for management tasks, taking into account the adolescent's perceptions of supportive behaviors. Additional research is needed with culturally diverse adolescents and with other chronic pediatric conditions.     

Associations Between Family Members' Perceptions of the Health Care System and the Health of Youths with Insulin-Dependent Diabetes Mellitus

This study examined family members' satisfaction with the healthcare system and the association between satisfaction and healthoutcomes in youths with insulin-dependent diabetes mellitus(IDDM). Subjects were 96 adolescents with IDDM and their parents.Satisfaction with the health care system was measured for physicians'personal qualities, physicians' professional competence, andthe cost and convenience of medical care. Health outcome measuresincluded the adolescents' adherence to treatment, metaboliccontrol (HbA_1c), and the number of diabetes-related hospitalizationsduring the previous year. Family members generally had favorableattitudes toward physicians' personal qualities and professionalcompetence, and neutral attitudes regarding the cost and convenienceof medical care Adolescents' adherence to treatment was positivelyassociated with fathers' perceptions of physicians' professionalcompetence, and marginally (p < .05) related to mothers'perceptions of physicians' professional competence and youths'perceptions of physicians' personal qualities. Youths' perceptionsof physicians' professional competence correlated negativelywith the number of hsopitalizations during the past year, and,unexpectedly, correlated positively with metabolic control.Interpretations of these findings and suggestions for futureresearch and presented.     

Attributions of adolescents with type 1 diabetes related to performing diabetes care around friends and peers: the moderating role of friend support

OBJECTIVE: To examine the relationships among negative attributions of friend and peer reactions to diabetes management in social situations, anticipated adherence difficulties, friend support, diabetes stress, and metabolic control. METHODS: A sample of 102 adolescents with Type 1 diabetes completed instruments measuring attribution of friend and peer reactions, anticipated adherence, friend support, and diabetes stress. Metabolic control was measured by the percentage of hemoglobin A1c. RESULTS: Structural equation modeling demonstrated an excellent fit of two models depicting the mediating role of anticipated adherence difficulties and diabetes stress on the relationship between negative attributions of friend (first model) and peer (second model) reactions and metabolic control. Friend support was found to moderate the path between diabetes stress and metabolic control in an unexpected manner. That is, as friend support increased, so did the relationship between stress and metabolic control. CONCLUSIONS: Adolescents who make negative attributions about reactions of friends and/or non friend peers are likely to find adherence difficult in social situations and have increased stress, with the latter associated with metabolic control. Results are discussed in terms of a social information processing model of adjustment.     

Assessing friend support of adolescents' diabetes care: the diabetes social support questionnaire-friends version

OBJECTIVE: To develop and evaluate the Diabetes Social Support Questionnaire for Friends (DSSQ-Friends), a measure of friends' supportive behaviors for adolescents with diabetes. Gender and age differences in friends' support for diabetes were examined, as well as the relationship between friend support and adolescents' treatment adherence. METHODS: Seventy-four adolescents (11-18 years) completed the DSSQ-Friends in addition to other measures of social support and a measure of treatment adherence. The behaviors on the DSSQ-Friends were scored for supportiveness and frequency. A combined rating (frequency x support) was also calculated to adjust the frequency of friends' support for adolescents' perceptions of supportiveness. RESULTS: The DSSQ-Friends had acceptable internal consistency and good test-retest reliability; it correlated well with other measures of friend support. Age-related differences were minimal; however, compared to boys, girls reported more friend support for blood glucose testing and emotions. Friend support was not related to overall treatment adherence but was related to adherence for blood glucose testing. CONCLUSIONS: We discuss the utility of the DSSQ-Friends as a clinical and research tool for measuring diabetes-specific friend support and offer suggestions for future research on friends' support for adolescents' diabetes care.     

Adherence Behavior Among Adolescents with Type I Insulin-Dependent Diabetes Mellitus: The Role of Cognitive Appraisal Processes

Guided by a transactional stress and coping model, this studyexamined the contribution of cognitive appraisal processes todiabetes adherence behavior among adolescents 12 to 18 yearsold (n=40). Multiple hierarchical regression analyses indicatedthat esteem related to physical appearance accounted for a significant16% of the variance in checking one's blood sugar. Perceivedcontrol when ill and attributional style for negative eventseach accounted for significant increments of variance as well(10 and 6% respectively), yielding a total of 32% of the varianceexplained by appraisal processes. Results suggest that adolescentswho (a) have a negative perception of their bodies, (b) perceivelittle internal control over health when ill. and (cJ have anexternal attributional style for negative events were at greatestrisk for poor compliance as indicated by Lss frequent checkingof blood sugar.     

Social support and personal models of diabetes as predictors of self-care and well-being: a longitudinal study of adolescents with diabetes

OBJECTIVES: To examine whether peer support and illness representation mediate the link between family support, self-management and well-being. METHOD: Fifty-two adolescents (12-18 years old) with Type I diabetes were recruited and followed over 6 months, completing assessments of self-management, well-being, and social support. RESULTS: Perceived impact of diabetes and supportive family and friends were prospectively predictive of participants' well-being measures. Although support from family and friends was predictive of better dietary self-care, this relationship was mediated by personal model beliefs. In particular, beliefs about the effectiveness of the diabetes treatment regimen to control diabetes was predictive of better dietary self-care. CONCLUSIONS: Both friends and family are important to support adolescents as they live with and manage their diabetes. Personal models of diabetes are important determinants of both dietary self-care and well-being. In addition, personal models may serve to mediate the relationship between social support and dietary behavior.     

Brief report: initial testing of scales measuring parent and adolescent Perceptions of Adolescents' Assumption of Diabetes Management

OBJECTIVE: This study tested parallel adolescent and parent versions of the Perceptions of Adolescents' Assumption of Diabetes Management scales. METHODS: First, 78 items developed from interview data were reviewed by a panel of adolescent and diabetes experts. Next, the scales were piloted with 43 adolescents with type 1 diabetes and their parents and, finally, tested with 100 dyads. Item and principal component analyses were performed. RESULTS: Following content validity and item analyses, five and four items remained in the advantages and disadvantages scales, respectively. One factor accounted for between 54 and 63% of variance, and internal consistency reliability ranged between .78 and .84 for the various versions of the scales. CONCLUSIONS: The Perceptions of Adolescents' Assumption of Diabetes Management scales show promise as parsimonious and reliable tools for use in research and practice related to parent-adolescent relationships in regard to adolescents' assumption of diabetes management.     

Professional Support and Care of Infants by Adolescent Mothers in England and the United States

This study investigated (a) whether teen-age mothers from twowestern nations, England and the United States, differed inthe support they received from professionals during the postnatalperiod; and (b) whether differences in the way the two groupsof mothers cared for their babies were associated with thatprofessional support. Twenty-one English and 21 matched Americanmothers between 17 and 19 at the time of their babies' births,par ticipated, with their babies, in the study. Mothers wereinterviewed when the babies were 2 to 3 months old. Mothersand babies were observed in their homes at 3 to 3 months post-40weeks gestation. Results indicated that English mothers receivedmore professional support and that they engaged in more smilingand eye contact, less frequent routine contact, and respondedmore quickly to their babies' crying than did American mothers.Evidence that professional support predicted maternal behaviorafter several other potential predictors were partialed outsuggested that support had a beneficial effect on the care youngmothers provided their babies. Evidence that partialing outprofessional support eliminated differences in behavior betweenEnglish and American mothers suggested that national differencesin maternal behavior were likely mediated through professionalsupport.     

A peer group intervention for adolescents with type 1 diabetes and their best friends.

OBJECTIVE: To devise and implement a structured intervention for integrating peers into diabetes care in a healthy and adaptive manner. METHODS: Adolescents with diabetes (n = 21) and their best friends (n = 21) participated in a group intervention aimed at increasing diabetes knowledge and social support of diabetes care. Measures of social support, knowledge about diabetes and support, diabetes functioning, and social functioning were obtained prior to and following intervention. RESULTS: Following the intervention, adolescents and their friends demonstrated higher levels of knowledge about diabetes and support, as well as a higher ratio of peer to family support, and friends demonstrated improved self-perception. Parents reported decreased diabetes-related conflict. CONCLUSIONS: Peer group intervention approaches may result in increased positive peer involvement in adolescents' diabetes care.     

Adolescent peer crowd affiliation: linkages with health-risk behaviors and close friendships

OBJECTIVE: To examine adolescents' peer crowd affiliation and its linkages with health-risk behaviors, their friends' health-risk behaviors, the presence of close friends in the same peer crowd, and adolescents' social acceptance. METHODS: We interviewed 250 high school students and identified six categories: popular, jocks, brains, burnouts, nonconformists, or average/other. Adolescents also reported on their health-risk behaviors (including use of cigarettes, alcohol, marijuana and other drugs; risky sexual behaviors; and other risk-taking behaviors), the health-risk behaviors of their friends, the peer crowd affiliation of their closest friends, and their perceived social acceptance. RESULTS: Burnouts and nonconformists had the highest levels of health-risk behaviors across the areas assessed, the greatest proportions of close friends who engaged in similar behaviors, and relatively low social acceptance from peers. Brains and their friends engaged in extremely low levels of health-risk behaviors. Jocks and populars also showed evidence of selected areas of health risk; these teens also were more socially accepted than others. In general, adolescents' closest friends were highly nested within the same peer crowds. CONCLUSIONS: The findings further our understanding of adolescent behaviors that put them at risk for serious adult onset conditions associated with high rates of morbidity and mortality. We discuss the implications of the findings for developing health promotion efforts for adolescents.     

Psychological Flexibility Among Youth with Type 1 Diabetes: Relating Patterns of Acceptance,Adherence, and Stress to Adaptation

Psychological flexibility, a complex concept encompassing both acceptance and action related factors, has been identified as a target for intervention for diabetes management. Research suggests acceptance, self-management, and stress, all factors that influence psychological flexibility, have an impact on adaptation to type 1 diabetes (T1D) by youth independently. However, yet to be explored is individually varying patterns of these variables and how they may relate to diabetes adaptation outcomes. The present study aimed to establish individual variations of patterns of these factors to derive profiles of psychological flexibility, and examine their relations to the adaptation outcomes of glycemic control and health-related quality of life. Youth (N = 162, aged 12–17 years) with T1D completed the Acceptance and Action Diabetes Questionnaire, Diabetes Stress Questionnaire, Self-Care Inventory, and Pediatric Quality of Life-Diabetes Module. Hemoglobin A_1c values were abstracted from medical records. Latent profile analysis yielded three profiles: High Acceptance & Adherence/Low Stress, Low Acceptance/Moderate Adherence & Stress, and Low Acceptance & Adherence/High Stress. The High Acceptance & Adherence/Low Stress group displayed significantly higher health-related quality of life and lower HbA_1c compared to other groups. Fluid psychological variables, such as acceptance and diabetes stress, and adherence behaviors may be salient targets to increase psychological flexibility for individual psychosocial interventions aimed at improving adaptation to type 1 diabetes in youth.     

Brief report: In-home family therapy for adolescents with poorly controlled diabetes: failure to maintain benefits at 6-month follow-up

OBJECTIVE: To examine 6-month follow-up data on the effectiveness of in-home Behavioral Family Systems Therapy (BFST) for adolescents with poorly controlled diabetes, using a pilot and feasibility study. METHODS: Eighteen adolescents with poorly controlled diabetes received ten 90-min sessions of in-home BFST. Diabetes-related functioning, general family functioning, and health status were assessed at baseline, immediately following treatment and 6-months after the treatment. RESULTS: Although the initial posttreatment follow-up evaluation indicated decreases in general family conflict, diabetes-related family conflict, and behavior problems, evaluation at a 6-month follow-up (N = 17) demonstrated that initial posttreatment improvements were no longer present for any of the variables assessed. Metabolic control remained unchanged from baseline to initial posttreatment as well as at 6-month follow-up. CONCLUSIONS: A plausible explanation for this finding is that participating families were experiencing distress that required longer-term treatment for enduring results, beyond what was employed in this study. Further research is necessary before in-home BFST can be considered an effective psychosocial intervention for adolescents with poorly controlled diabetes.     

Self-Care Behaviors in Insulin-Dependent Diabetes: Evaluative Tools and Their Associations with Glycemic Control

Clarified the relationships between self-care behaviors andillness-specific outcomes in approximately 270 youths with IDDM.Youths were assessed at three points in time using a semistructuredinterview measure and multiple indices of dietary intake andphysical activity with two different methodologies (i.e., recalls,logs). Glycemic control was most strongly related to the semistructuredSelf-Care Adherence Interview (SCAI); and second to the overallquality of the youths' dietary intake. The SCAI also predictedglycemic control over time. Physical activity levels and specificnutritional components from the logs and recalls were generallyunrelated to glycemic control.     

Adherence among children and adolescents with insulin-dependent diabetes mellitus over a four-year longitudinal follow-up: II. Immediate and long-term linkages with the family milieu

Cross-sectional and longitudinal findings drawn from a 4-year longitudinal study of an onset cohort of preadolescents and early adolescents with insulin-dependent diabetes and their families are presented. Patient and parent perceptions of the family environment near the time of diagnosis are used to examine patterns of adherence in the first year of illness as well as over the four follow-up years. We found that family conflict, cohesion, and organization were strongly associated with independently rated first-year adherence levels. The strongest predictor of longer term adherence was family conflict, as experienced by the patients. In addition, parents' and youngsters' perceptions of family cohesion predicted improved adherence as well as overall higher levels of patient adherence. The findings are discussed with respect to the clinical implications of discovering those family characteristics that can, shortly after diagnosis, predict short- and long-term adherence. In addition, we present planned investigations intended to further clarify paths from family perceptions to individual diabetes behaviors.     

Family mediators and moderators of treatment outcomes among youths with poorly controlled type 1 diabetes: results from a randomized controlled trial

OBJECTIVE: To determine whether multisystemic therapy (MST) improved family relationships among youths with poorly controlled type 1 diabetes and whether these changes mediated MST effects on health outcomes. The moderating effect of family demographics on study outcomes was also assessed. METHODS: A randomized controlled trial was conducted with 127 youths. Changes in general family relationships and caregiver support for diabetes care from baseline to treatment completion were assessed. Structural equation modeling (SEM) was used to test whether changes in family relations mediated improvements in frequency of blood glucose testing (BGT) and metabolic control. RESULTS: MST increased support for diabetes care from both primary and secondary caregivers in two-parent but not in single-parent families. However, MST had the strongest effects on BGT and metabolic control in single-parent families. SEM did not support family relations as the mediator of improved BGT or metabolic control. Rather, MST had a direct effect on BGT for all participants. BGT mediated improvements in metabolic control among single-parent families. CONCLUSIONS: MST improved family relationships for youths with diabetes in two-parent but not in single-parent families. Objective outcomes related to diabetes were strongest for single-parent families. Other processes such as increased parental monitoring may have been responsible for improved health outcomes among these families.     

Family Context in Pediatric Psychology from a Transactional Perspective: Family Rituals and Stories as Example

Reviewed the transactional model as applied to the family contextof pediatric psychology. A three-part sequence of child behavior,parent behaviour, and family interpretation was used to describedevelopmental adaptation and trasitions. It was proposed thatfamilies are regulated by practices that are proximal to thechild's experience and representations thatare more distal tothe child's experience. Family practices are examined throughfamily routines and rituals. Family representations are examinedthrough family stories. Case examples of low birth weight prematureinfants and an adolescent referred for repeated hospitalizationsdue to diabetic ketoacidosis were presented to illustrate themodel. Guidelines for thepracticing pediatric psychologist arepresented to asses family organization through family ritualsand family meaning-making in the telling of family stories.     

Parent and adolescent versions of the diabetes-specific parental support for adolescents' autonomy scale: development and initial testing

OBJECTIVE: To develop and initially test the psychometric properties of parent and adolescent versions of the Diabetes-Specific Parental Support for Adolescents' Autonomy Scale. METHODS: Data-based scale items were developed, analyzed for content validity, and then piloted with 43 adolescents with type 1 diabetes and their parents. Psychometric properties of the scales were then determined with 100 adolescents with type 1 diabetes and their parents. RESULTS: Content validity indices of .80 or greater were obtained for 26 items. Item analysis in the pilot and large-sample groups resulted in 22 items being deleted. Principal Components Analysis of the remaining four items indicated one factor in both parent and adolescent versions, accounting for 50-62% of variance and with Cronbach alpha coefficients of .67-.80. CONCLUSIONS: This newly developed parsimonious scale, initially tested to be reliable, and valid, will facilitate research on parental support for adolescents' development of diabetes management autonomy.     

Adherence among children and adolescents with insulin-dependent diabetes mellitus over a four-year longitudinal follow-up: I. The influence of patient coping and adjustment

An onset cohort of adolescents and children with insulin-dependent diabetes mellitus was studied over a 4-year period. Individual patient psychosocial and demographic factors were assessed at study inception and used to examine aspects of adherence over the follow-up. We found that initial assessment of patient coping (defense level, adaptive strength, and locus of control) and adjustment at study inception were predictive of the level of patient adherence to diabetic regimen over the 4 years of study. Psychosocial variables predicted adherence outcomes independent of patient age. This was found for three domains of adherence, i.e., diet, insulin adjustment, and metabolic monitoring, and for the composite index derived from the separate adherence scales. Preadolescents (ages 9-12) at study entry were more adherent than patients who were already adolescent (ages 13-16) when diagnosed. Using multiple regression, three factors (age, adjustment, ego defense level) accounted for 47% of the variance in adherence. No factors were predictive of change in adherence during the follow-up. Thus, psychosocial characteristics of diabetic children assessed shortly after diagnosis predicted typical or average adherence over a 4-year period. Identification of such characteristics may be useful in developing strategies for intervention early in the course of illness.     

Psychosocial and Family Functioning in Children with Insulin-Dependent Diabetes at Diagnosis and One Year Later

Examined the initial impact and subsequent adjustment to thediagnosis of insulin-dependent diabetes mellitus (IDDM). Childrenbetween 1 and 14 years of age and their families were assessedseveral weeks after diagnosis and again a year later using standardizedmeasures of child behavior, parental mental health, and familyfunctioning. Immediately after diagnosis, the children and bothparents exhibited mild symptoms of psychological distress butthese had largely resolved at 12-month follow-up. The impactof IDDM diagnosis on family functioning varied with informant,SES, and the age of the child, with an overall tendency forfamilies to become less flexible over the year. Findings suggestthat most children and their parents exhibit satisfactory individualadjustment after a period of initial stress but family functioningis affected in complex ways. Serial follow-up of the cohortis planned to establish whether the current findings are predictiveof longer term outcome.     

Child behavior problems and family functioning as predictors of adherence and glycemic control in economically disadvantaged children with type 1 diabetes: a prospective study

OBJECTIVE: This prospective study examined how child behavior problems and family functioning predict adherence behavior and glucose regulation (glycemic control) in a sample of economically disadvantaged children. METHODS: Children with type 1 diabetes (N = 116; 58.6% African American) were assessed for externalizing and internalizing behavior problems and family adaptability and cohesion and followed for a mean of 3.8 years. Glycemic control (glycosylated hemoglobin [HbA1c]) was assessed at baseline and follow-up, and adherence was assessed at follow-up. RESULTS: Analyses controlled for baseline HbA1c and years to follow-up. Multivariate analyses indicated that better adherence was predicted by high family cohesion. Better glycemic control was predicted by high family cohesion, the absence of externalizing behavior problems, and the presence of internalizing behavior problems. In addition, tests of moderation indicated that better follow-up glycemic control occurred among girls from high cohesion families and younger children from low adaptability families. Although better adherence predicted better glycemic control, adherence did not mediate the relationships of behavior problems or family functioning with glycemic control. CONCLUSIONS: A child's behavior problems and family functioning may influence both adherence to the diabetes regimen and glycemic control several years later, suggesting the potential value of interventions that address child behavior and family functioning.