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The purpose of this review is to discuss research methods and clinical management strategies employed with other conditions (i. e., spina bifida and craniofacial conditions) and how these methods and strategies could be applied to youth with disorders of sex development (DSD). The review focuses specifically on the potential overlap between DSD and these other conditions across the following 3 areas: (1) developmentally-oriented theories that underlie the research base for chronic physical conditions; (2) research designs and methodological features that have proved fruitful in these areas; and (3) the potential applicability to DSD of clinical management practices for youth with craniofacial conditions. [ABSTRACT FROM AUTHOR]

Objective: To evaluate associations among parent-child behaviors and generic and diabetes-specific health-related quality of life (HRQOL) in a multi-site sample of youth with type 1 diabetes.Method: One hundred and twenty-one youth and their primary caregivers completed measures of parent-child behaviors, child HRQOL, and participated in an observed family interaction task.Results: Diabetes-specific parent-child variables were associated significantly with both generic and diabetes-specific HRQOL above and beyond the contributions of demographic and generic parent-child variables, accounting for between 13% and 31% of the variance in HRQOL. Diabetes-specific family conflict and negative diabetes-specific family communication were associated with lower HRQOL. Collaborative parent involvement in diabetes care was associated with higher levels of HRQOL.Conclusions: Interventions that target diabetes-specific family interactions will be beneficial to the quality of life of children with type 1 diabetes. [ABSTRACT FROM AUTHOR]

Objective: To study coping socialization longitudinally by examining reported and observed family environment and parenting variables in relation to children's problem-focused coping in a sample of 68 families of preadolescents with spina bifida and 68 matched able-bodied comparison families.Methods: Family environment and parenting variables were assessed with mother and father reports and observational measures. Children's problem-focused coping was self-reported.Results: Prospective analyses revealed that maternal responsiveness, paternal responsiveness, and family cohesion predicted an increase in children's use of problem-focused coping strategies, while change in paternal responsiveness and maternal responsiveness and demandingness was related concurrently to change in coping. Few group (spina bifida vs. able-bodied) or gender differences with respect to parenting and family influences on children's coping behaviors were found.Conclusions: Multimethod findings suggest that the quality of parenting and family environment is associated with children's problem-focused coping behaviors. We discuss clinical implications. [ABSTRACT FROM AUTHOR]

Based on a family systems/social-ecological perspective, mothers and fathers of 8- and 9-year-old children with spina bifida (n = 55; 28 male, 27 female) were examined in comparison to a matched group of parents with 8- and 9-year-old able-bodied children (n = 55; 29 male, 26 female) across several areas of functioning (individual, parental, and marital). Findings suggested that mothers and fathers in the spina bifida sample tended to report more psychosocial stress than their counterparts in the able-bodied sample. Specifically, mothers and fathers in the spina bifida group reported less parental satisfaction than parents in the able-bodied group. Mothers in the spina bifida group reported less perceived parental competence, more social isolation, and less adaptability to change; fathers in the spina bifida group reported more psychological symptoms. No differences between the spina bifida and able-bodied groups were found with respect to marital satisfaction. Coping predictors of adjustment tended to vary as a function of parent gender rather than group status. [ABSTRACT FROM AUTHOR]

Objective: Benefit-finding and growth is an important process across a range of medical populations. However, it has been understudied in the context of lifelong chronic conditions, such as spina bifida (SB). This study aimed to develop a new measure of benefit-finding and growth for youth with SB, confirm its factor structure, and examine its psychometric properties., Method: To generate items for the new measure, 20 adolescents and young adults with SB completed qualitative interviews regarding their experience of living with SB. Interviews were coded for benefits. Questionnaire items were generated from these benefits, and an expert panel refined the wording of these items. The resultant 31-item measure was shared with six of the 20 participants for feedback and then piloted among 251 youth with SB. The factor structure of the measure was confirmed and reliability and convergent validity were assessed., Results: Both a one- and four-factor structure were supported. The four factors include: Life Perspectives and Priorities, Personal Characteristics and Traits, Connections and Opportunities, and Problem Solving. Higher total and factor scores represent greater benefit-finding and growth. The measure demonstrated excellent internal consistency (α = 0.95). The new measure also showed significant positive correlations with optimism, positive affect, and life satisfaction., Conclusions: This study produced a measure of benefit-finding and growth for youth with SB. Clinically, information about what youth with SB perceive to be their areas of strength and growth from their condition provides crucial insight into which factors to enhance in this population., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objective: The objective of the study was to determine if health literacy is associated with health-related quality of life (HRQOL) in adolescents and young adults (AYAs) with spina bifida., Study Design: Between June 2019 and March 2020, the Patient-Reported Outcome Measurement Information System Pediatric Global Health-7 (PGH-7), a measure of HRQOL, and the Brief Health Literacy Screening Tool (BRIEF) were administered to patients ≥12 years old with a diagnosis of spina bifida seen in our multidisciplinary spina bifida center. Questionnaires were completed at scheduled clinic visits. The primary outcome was the PGH-7 normalized T-score. The primary exposure was the BRIEF score. Demographic and clinical characteristics were obtained from the medical record. Nested, multivariable linear regression models assessed the association between health literacy and the PGH-7 score., Results: Of 232 eligible patients who presented to clinic, 226 (97.4%) met inclusion criteria for this study. The median age was 17.0 years (range: 12-31). Most individuals were female (54.0%) and had myelomeningocele (61.5%). Inadequate, marginal, and adequate health literacy levels were reported by 35.0%, 28.3%, and 36.7% of individuals. In univariable analysis, higher health literacy levels were associated with higher PGH-7 scores. In nested, sequentially adjusted multivariable linear regression models, a higher health literacy level was associated with a stepwise increase in the PGH-7 score. In the fully adjusted model, adequate health literacy and marginal health literacy, compared with inadequate health literacy, were associated with increases in a PGH-7 score of 3.3 (95% CI: 0.2-6.3) and 1.1 (95% CI: -2.0 to 4.2), respectively., Conclusions: Health literacy was associated with HRQOL after adjusting for demographic and clinical factors. Strategies incorporating health literacy are needed to improve HRQOL in AYAs with spina bifida., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Objectives: To compare the self-reported health of extremely low birth weight (ELBW, <1 kg) adolescents with that of normal birth weight (NBW) controls and the children's assessments of their general health at ages 8 versus 14 years., Methods: One hundred sixty-eight ELBW children and 115 NBW controls of similar gender and sociodemographic status completed the Child Health and Illness Profile-Adolescent Edition at age 14 years. It includes 6 domains: Satisfaction, Comfort, Resilience, Risk Avoidance, Achievement, and Disorders. At age 8 years, the children had completed the Child Health and Illness Profile-Child Edition. Results were compared between ELBW and NBW subjects adjusting for gender and sociodemographic status., Results: ELBW adolescents rated their health similar to that of NBW adolescents in the domains of Satisfaction, Comfort, Resilience, Achievement and Disorders but reported more Risk Avoidance (effect size [ES] 0.6, P < .001). In the subdomain of Resilience, they also noted less physical activity (ES -0.58, P < .001), and in the subdomain of Disorders, more long-term surgical (ES -0.49) and psychosocial disorders (ES -0.49; both P < .01). Both ELBW and NBW children reported a decrease in general health between ages 8 and 14 years, which did not differ significantly between groups., Conclusions: ELBW adolescents report similar health and well-being compared with NBW controls but greater risk avoidance. Both ELBW and NBW children rate their general health to be poorer at age 14 than at age 8 years, possibly due to age-related developmental changes.

The current study examined gender differences in communication about sex-related topics in a community sample of urban, African-American mothers and adolescents living in impoverished neighborhoods with high HIV rates. One hundred and sixty-two mother-adolescent dyads completed self-report measures of sex-related communication. Youth also reported on their sexual risk. We identified the range of sexual-based topics that adolescents discussed with their mothers, fathers, friends, and at school. The relationship between the frequency of sexual communication and sexual risk was examined. We also investigated congruency between adolescent and mother report about whether sexual-based discussions occurred. Consistent with prior research, girls talked to their mothers, fathers, friends, and at school about sex-related topics more than boys. Findings indicated that mothers not only communicated more frequently about sexual issues with their daughters than sons but that parental messages for girls were more protective. Greater sexual communication with mother was significantly associated with decreased HIV risk in the past 90 days and increased protection from HIV. Inconsistencies between mother and adolescent reports about sexual communication were marginally associated with decreased protection from HIV. Findings reveal the protective effect of sexual communication and the general lack of congruence between mother and adolescent reports of sexual communication.

To identify aspects of family behavior associated with glycemic control in youth with type 1 diabetes mellitus during the transition to adolescence, the authors studied 121 9- to 14-year-olds (M = 12.1 yrs) and their parents, who completed the Diabetes Family Conflict Scale (DFCS) and the Diabetes Family Responsibility Questionnaire (DFRQ). From the DFRQ, the authors derived 2 dyadic variables, frequency of agreement (exact parent and child concurrence about who was responsible for a task) and frequency of discordance (opposite parent and child reports about responsibility). The authors divided the cohort into Younger (n = 57, M = 10.6 yrs) and Older (n = 64, M = 13.5 yrs) groups. Family conflict was significantly related to glycemic control in the entire cohort and in both the Younger and Older groups. However, only in the Younger group was Agreement related to glycemic control, with higher Agreement associated with better glycemic control. Findings suggest that Agreement about sharing of diabetes responsibilities may be an important target for family-based interventions aiming to optimize glycemic control in preteen youth.

After falling into disfavor in the early 1990s, the construct of body image, as measured by body-size estimation (BSE) techniques, has been the focus of increasing interest in the eating disorder literature because of recent theoretical, empirical, and methodological advances. However, no published BSE measure to date has been shown to be psychometrically sound, well normed, inexpensive, and straightforward. This article provides normative and psychometric data for an adapted silhouette BSE measure. Comprehensive normative data are presented on college women's cognitively and affectively based body-size estimates, as well as their desired body size and related discrepancy indexes (cognitive vs. desired, affective vs. desired, affective vs. cognitive). Preliminary data indicate that indexes from the new measure are moderately reliable over time, consistent with their theoretical link to fluctuations in body-related attitudes. Data also support the convergent validity of the measures. Affectively based BSE, alone or as part of a discrepancy measure with desired body size, was most strongly related to measures of eating pathology, body focus, body dissatisfaction, and depressed affect.

Objective: To examine relations between condition severity and psychosocial functioning in 70 8- and 9-year-old pre-adolescents with spina bifida by testing several direct, indirect, and mediated effects models for proximal functional status and distal adjustment outcomes., Methods: Proximal functional status outcomes (e.g., degree of involvement in activities, scholastic competence, athletic competence, attentional problems) and distal adjustment outcomes (e.g., behavior problems, social competence) were assessed with mother, father, and teacher report. Severity variables included spinal lesion level, spina bifida classification, shunt status, ambulation status, number of shunt surgeries, and two severity composites., Results: Condition severity was associated with the proximal functional status outcomes across parent and teacher report. In contrast, no significant relationships were found between the severity parameters and distal adjustment outcomes. Findings supported a proximal effects model of condition severity as well as an indirect effects model (e.g., presence of a shunt-->less scholastic competence-->less social competence) and were consistent with recent theoretical formulations (e.g., Wallander & Varni, 1995)., Conclusions: Disentangling proximal functional status outcomes and distal adjustment outcomes is critical in studies of condition severity and psychosocial functioning. We discuss clinical implications.

Adherence to medical regimens was assessed in 67 pre-adolescents with spina bifida (8- and 9-year-olds; 37 boys, 30 girls), with mother, father, teacher, and health professional report. The Parent-Report of Medical Adherence in Spina Bifida Scale (PROMASB) was developed and includes multidimensional scales for the following tasks: catheterization, bowel care, skin care, medication, and ambulation. With few exceptions, the PROMASB has adequate psychometric properties. However, findings revealed modest to low correlations between respondents. Mothers and fathers reported significantly more noncompliance than teachers and health professionals. For the most part, all informants reported that most children were compliant across all tasks. Additional analyses based on qualitative data suggest that parents attribute compliance difficulties to motivational as well as attentional-memory factors.

Numerous recent attempts to identify mediated and moderated effects in child-clinical and pediatric research on child adjustment have been characterized by terminological, conceptual, and statistical inconsistencies. To promote greater clarity, the terms mediating and moderating are defined and differentiated. Recommended statistical strategies that can be used to test for these effects are reviewed (i.e., multiple regression and structural equation modeling techniques). The distinction between mediated and indirect effects is also discussed. Examples of troublesome and appropriate uses of these terms in the child-clinical and pediatric psychology literatures are highlighted.

Objective: Clinicians have suggested that the core pathology of the eating disorders is an extreme body focus in self-evaluation. This study investigated whether women who focus on their own bodies place a similar focus on body shape when evaluating others and expect others to have a strong body focus in their self-evaluations., Method: Eighty-four undergraduate women completed the Eating Attitudes Test (EAT-26), which largely measures body focus in self-evaluation. Each was also shown a series of photographs of women and asked what aspects of the photos they first noticed and how the depicted women felt about themselves. Finally, each responded to scenarios in which they or a hypothetical woman overate or dieted., Results: High EAT-26 scores were associated with an elevated number of "fat" or "thin" feelings attributed to women in the slides and a marginally greater number of body-related observations made about the slides. High EAT-26 scores were also associated with inferred negative feelings of others after overeating and positive feelings of others after dieting. In fact, the relationships between EAT-26 scores and feelings in response to hypothetical overeating and dieting situations were no stronger when applied to the self than when applied to others. However, when presented with a situation in which they overate, participants showed stronger relationships between their EAT-26 scores and their expected weight change and dieting behavior than they predicted would occur for others after an identical period of overeating., Discussion: Extrapolating findings to a clinical population, women with eating disorders may focus on others' body shapes as well as their own. These women may also expect others to be as emotionally invested in their own body shapes as they are themselves, but may not expect others to be as prone to gain weight or to diet as strictly as they do. Treatment for this somewhat recalcitrant belief system is discussed, as are directions for future research.

Past research has found that very low scorers on the Beck Depression Inventory (BDI) tend to respond in a "fake-good" manner on the Minnesota Multiphasic Personality Inventory (MMPI) validity scales. This findings was interpreted as evidence of poor "low-end specificity." This study replicated and extended this work by evaluating the low-end specificity of four popular depression measures. The evidence of problems with low-end specificity was strong for the BDI and marginal for the Profile of Mood States depression subscale. Interestingly, MMPI scores in the "normal" range were associated with "fake-good" responding, whereas very low and high scores were not. There was no evidence of an association between fake-good responding and scores on Exner's Depression Index for the Rorschach. Implications of these findings and guidelines for dealing with problems with low-end specificity in research are discussed.

This study investigated the escape model of binge eating through a cluster analysis using standardized measures. A sample of 126 undergraduate women underwent a manipulation of their level of cognition and were asked to "taste-test" several flavors of ice cream. Questionnaire data from these women were entered into a cluster analysis. Two groups emerged: women in the "binge-prone" group were significantly more depressed, had lower self-esteem, had more chaotic and extreme eating patterns, and were more self-conscious than those in the control group. In validation work, binge-prone women were shown to report elevated levels of bulimic symptomatology and, when in the presence of a food they enjoyed, to respond to increases in level of cognition by eating more. These results were consistent with some, but not all, of the components of the escape model.

This study investigated the relation between emotional autonomy, as measured by Steinberg and Silverberg's Emotional Autonomy Scale (EA), and adolescent adjustment as moderated by several individual, familial, and cultural contexts. Subjects were 96 adolescents (10-18 years old) and their mothers and teachers. Results indicate that when the affective nature of the parent-adolescent relationship is positive (e.g., maternal warmth is high or intensity of parent-adolescent conflict is low), positive adolescent adjustment is more likely when adolescents report less emotional autonomy. On the other hand, when the family environment is more stressful, emotional autonomy is positively associated with adolescent adjustment. Findings suggest that higher scores on the EA scale index emotional detachment from parents and that such detachment is detrimental in supportive familial environments but adaptive in less supportive familial environments. That emotional detachment from parents appears to serve a protective function in certain stressful situations is viewed as analogous to the adoption of an avoidant attachment strategy during infancy.

The purpose of this commentary is to respond to Levine's (1994) critique of our earlier article (McClanahan & Holmbeck, 1992). We agree with Levine's argument that changes in the subscales of the Separation-Individuation Test of Adolescence (SITA; Levine, Green, & Millon, 1986) should be made based on both theoretical and statistical considerations. On the other hand, we also argue that attention needs to be paid to the content and construct validity of the SITA in future revisions of the measure.

We evaluated the construct validity of the Separation-Individuation Test of Adolescence (SITA; Levine, Green, & Millon, 1986). Based on a review of the theoretical literature on separation-individuation issues during late adolescence, predictions were made as to how SITA scores would correlate with aspects of family functioning and psychological adjustment. The SITA and a battery of self-report family and adjustment measures were administered to 454 college students (272 females and 182 males; 74% White, 16% African American, and 10% Asian American or Hispanic). Correlational analyses offered partial support for the construct validity of the SITA. Cluster analyses revealed four distinct groups of subjects (anxious deniers, healthy separators, peaceful detachers, and succorance seekers), each with its own coherent set of scores on the SITA and instruments measuring family relations and positive and negative psychological adjustment. Criticisms concerning the labels and composition of the SITA scales are also discussed.

Prior research has established that temporary perturbations characterize parent-daughter relations around menarche. This study was designed to determine whether the observed perturbations are indicative of conflictive engagement, operationally defined as sequential reciprocity of interruptions and disagreements, and to examine the affective nature of such behaviors. Sequential analyses were applied to the observed behavior of 111 intact families with firstborn seventh-grade girls (modal age = 12 years old) who participated in a structured family interaction task. Results indicated that conflictive engagement with parents is more frequent shortly after menarche, especially in the mother-daughter dyad. Withdrawal of positive affect also was associated with menarcheal status; in the mother-daughter dyad, interruptions and disagreements were less often responded to with positive affect for the more mature groups. It is suggested that because of the nature of the interpersonal and intrapsychic processes occurring in the family around menarche, conflict may facilitate familial adaptation to pubertal change and make moderate levels of conflict normative in healthy families.

Intelligence and achievement test scores for 89 children with myelomeningocele (MM), ages 4 to 14 years, were obtained from medical records. These children scored below the population average but within the normal range on most tests. The greatest deficits occurred on Performance IQ, arithmetic achievement, and visual-motor integration (copying geometric designs). With increasing age, these children fell further behind age-peers on tests of arithmetic and visual-motor performance while keeping pace on reading and spelling tests. We speculate that these findings may reflect a developmental difference between MM children and nonhandicapped children in a visual-perceptual-organizational cognitive function such as Rourke (1987) has proposed.

Six psychiatry inpatients were observed during mealtimes to determine and evaluate staff intervention techniques. To extend and further elaborate the findings of a previous work (Pines, Kupst, Natta, & Schulman, 1985), staff behaviors (positive, punitive, isolating, and neutral) were investigated for their potential relationship to subsequent child behaviors (positive, negative, and inactive) via a lag sequential analytic approach. Staff punitive and isolating behaviors tended to be associated with significant increases in the likelihood of subsequent child negative behaviors and with significant decreases in child positive behaviors. Staff positive behaviors tended not to be related to a subsequent increase or decrease in any of the coded child behaviors. Findings demonstrate the utility of assessing conditional probabilities of sequences of staff-child behaviors in psychiatric inpatients.

Parental reports of disagreements and serious disagreements about rules were examined in 200 families with seventh-grade boys and girls. No gender differences were found: Mothers did not report more disagreements than fathers; no more disagreements were reported for girls than boys. Disagreements about personal habits and family obligations were more common than disagreements about peer relations. Disagreements and serious disagreements, in general, were significantly correlated (positively) with parental reports of child oppositionalism and (negatively) with parents' satisfaction with parenting the target child, although some dyadic differences were found. Children's reports of parental acceptance were negatively correlated with disagreements only for the father-daughter dyad. Support was found for some of Baumrind's ([1968] "Authoritarian vs. Authoritative Control,"Adolescence 3: 255-272) notions regarding relations between rule frequency, child participation in rule making, and disagreements about rules, especially for the father-daughter dyad.

The purpose of the present study was to determine the prevalence and self-reported developmental antecedents of beliefs in storm and stress notions about adolescence, and to investigate the effects on such beliefs of an undergraduate course on adolescent development. Subjects were 192 college students who were enrolled in a course entitled "Psychology of Adolescence" at a large urban university. The questionnaire, which was administered at the beginning and end of the course, contained a storm and stress scale, items tapping the nature of parent-adolescent arguments, Dusek and Flaherty's (1981) Self-Concept Scale, and several demographic questions. Results suggested that beliefs in storm and stress notions are quite prevalent, arguments between parents and adolescents are believed to occur quite frequently, and females endorse storm and stress beliefs more readily than do males. Moreover, subjects tended to endorse storm and stress notions more readily if they viewed themselves as being less adjusted during their own adolescence and if they reported more adjustment instability. After a course on adolescent development, the tendency to report that the typical adolescent experiences storm and stress decreased, and this decrease was more pronounced for those receiving higher grades in the course.

The associations between menarcheal status and several child-rearing and outcome variables were examined for mother-daughter and father-daughter dyads. All variables were assessed with questionnaires as an extension of earlier observational studies. Analyses were conducted via multiple regression analyses wherein menarcheal status was treated as a continuous variable and was entered into the regression equation as a set of power polynomial terms. The results indicated that most of the significant relations occurred for the mother-daughter dyad, and most of these relations were curvilinear. When menarche occurs at or around the modal time, changes in parent-child relations may be best thought of as temporary perturbations, but when menarche occurs early the effects may persist.

Conducted chart review study of 114 4- to 14-year-olds hospitalized for elective surgery to investigate analgesic medication patterns. Correcting for body weight and different drug potencies, correlations were examined between analgesics, child age, painfulness of recovery, and seriousness of surgical procedure. Weight-adjusted analgesics prescribed and delivered PRN were unrelated to painfulness of procedure and age. Expert ratings of the seriousness of anticipated sequelae were found to be a modest but significant predictor of analgesics. Results suggest that PRN prescription of analgesics in children essentially guarantees very low drug delivery without achieving individualized pain management. Possible interpretations and suggestions for research into effects of practitioner attributions of seriousness on clinical decision making are discussed, along with implications for other explanations of inadequate analgesic practices.

Inappropriate applications and interpretations of multiple regression analyses by Zeldow and his associated (Zeldow, Clark, & Daugherty, 1985; Zeldow, Daugherty, & Clark, 1987) are discussed as are several general interpretive and statistical issues. To perform and interpret multiple regressions, several characteristics of this statistical approach must be taken into account. Of critical importance is the order in which variables are entered, the choice of regression approaches, the direction of an effect upon entering the model, and the manner in which the interpretation of interaction effects varies as a function of the presence or absence of main effects. Because Zeldow et al. (1985, 1987) did not consider these factors, their regression analyses were not run as stated and are difficult to interpret. Five hypothetical outcomes in androgyny research and an example involving actual data are presented.