Psychosocial Adjustments Among Adolescents With Craniofacial Conditions and the Influence of Social Factors: A Multi-Informant Study.

BACKGROUND: Previous studies have investigated psychosocial adjustments among adolescents with cleft lip and/or palate (CL/P), but our understanding of other craniofacial conditions remains limited. The objective of this study is to compare psychosocial adjustments among 3 groups of adolescents: craniofacial conditions other than cleft lip and/or palate (craniofacial anomaly [CFA]), CL/P, and controls (CON). Our secondary objective is to examine how social factors may predict the adjustments levels. DESIGN: Cross-sectional, multi-informant, controlled survey study. PARTICIPANTS: Aged 11- to 17-year olds. Craniofacial anomaly (n = 49), isolated CL/P (n = 42), and 55 CON. Total = 146. OUTCOME MEASURES: The Strengths and Difficulties Questionnaire (self-report, parent report, and teacher report). RESULTS: All 3 informant groups displayed similar patterns, where CFA reported the highest difficulties, followed by CL/P, while CON scored the lowest. Parent reports demonstrated significant differences among the 3 groups for most subscales and were emphasized for peer problems. Self-reports showed significant differences between CFA and CON for total scores and peer problems, while teacher reports showed significant differences for peer problems only. Craniofacial anomaly displayed the highest frequency of abnormal psychosocial adjustments, followed by CL/P. Experiencing bullying or teasing predicted increased difficulties, while having a good friend predicted decreased difficulties. CONCLUSIONS: Adolescents with CFA, and to a lesser extent CL/P, may be at a higher risk of having psychosocial problems. Peer problems may constitute the biggest challenge that CFA and CL/P confront. Social factors, especially being bullied or having a good friend, may predict the psychosocial well-being of adolescents with craniofacial conditions.

Communication about the risks and benefits of phase I pediatric oncology trials.

INTRODUCTION: Phase 1 pediatric oncology trials offer only a small chance of direct benefit and may have significant risks and an impact on quality of life. To date, research has not examined discussions of risks and benefits during informed consent conferences for phase 1 pediatric oncology trials. The objective of the current study was to examine clinician and family communication about risks, benefits, and quality of life during informed consent conferences for phase 1 pediatric oncology trials. METHODS: Participants included clinician investigators, parents, and children recruited from 6 sites conducting phase 1 pediatric oncology trials. Eighty-five informed consent conferences were observed and audiotaped. Trained coders assessed discussions of risks, benefits, and quality of life. Types of risks discussed were coded (e.g., unanticipated risks, digestive system risks, and death). Types of benefits were categorized as therapeutic (e.g., discussion of how participation may or may not directly benefit child), psychological, bridge to future trial, and altruism. RESULTS: Risks and benefits were discussed in 95% and 88% of informed consent conferences, respectively. Therapeutic benefit was the most frequently discussed benefit. The impact of trial participation on quality of life was discussed in the majority (88%) of informed consent conferences. CONCLUSION: Therapeutic benefit, risks, and quality of life were frequently discussed. The range of information discussed during informed consent conferences suggests the need for considering a staged process of informed consent for phase 1 pediatric oncology trials.

Competencies in Training at the Graduate Student Level: Example of a Pediatric Psychology Seminar Course.

The recently developed competencies in pediatric psychology from the Society of Pediatric Psychology (SPP) Task Force on Competencies and Best Training Practices in Pediatric Psychology provide a benchmark to evaluate training program practices and student progress toward training in level-specific competency goals. Graduate-level training presents a unique challenge for addressing the breadth of competencies required in pediatric psychology while maintaining development of broader clinical psychology training goals. We describe a recurring graduate-level pediatric psychology seminar course that addresses training in a number of the competency cluster areas. The structure of the seminar, examples of classroom topics that correspond with competency cluster areas as well as benchmarks used to evaluate each student's development in the competency area are provided. Specific challenges in developing and maintaining the seminar in this format are identified, and possible solutions are offered. This training format could serve as a model for established pediatric psychology programs to expand their didactic training goals or for programs without formal pediatric psychology training to address competencies outside of clinical placements.

Parenting stress among caregivers of children with chronic illness: a systematic review.

OBJECTIVE: To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.

Communicating and understanding the purpose of pediatric phase I cancer trials.

PURPOSE: Quality informed consent should provide a clear understanding of the purpose of the research. Given the ethical challenges of pediatric phase I cancer trials, it is important to investigate physician-parent communication during informed consent conferences (ICCs) and parental understanding of the purpose of these studies. METHODS: In the multisite Informed Consent in Pediatric Phase I Cancer Trials study, 85 ICCs for phase I research between June 2008 and May 2011 were directly observed, and 60 parents were subsequently interviewed. The scientific purpose was defined as composite understanding of drug safety, dose finding, and dose escalation. We determined the frequency with which physicians explained these and other phase I-related concepts during the ICC. Parent interviews were analyzed to determine understanding. RESULTS: The child was present at 83 of 85 ICCs. Only 32% of parents demonstrated substantial understanding of the scientific purpose of phase I cancer trials; 35% demonstrated little or no understanding. Parents of higher socioeconomic status and racial majority status were more likely to understand the scientific purpose. Factors associated with understanding included physician explanation of the goal of the applicable phase I protocol offered (explained in 85% of ICCs) and explanation of the dose cohorts (explained in 43% of ICCs). Physicians explained drug safety in 23% of ICCs, dose finding in 52% of ICCs, and dose escalation in 53% of ICCs. CONCLUSION: Many parents of children participating in phase I trials do not understand the purpose of these trials. Physician-parent communication about the purpose of phase I research is lacking during ICCs.

A feasibility trial of a video intervention to improve informed consent for parents of children with leukemia.

BACKGROUND: Research on parental understanding of informed consent for pediatric randomized clinical trials (RCTs) has highlighted weaknesses in understanding of key aspects of informed consent. The goals of the current study were to assess the feasibility of and parental satisfaction with a video intervention to improve informed consent for pediatric leukemia RCTs and to compare parental question asking during informed consent conferences (ICCs) for parents in the current study with historical control data. PROCEDURE: A 20-min video was produced. Utilizing the principles of anticipatory guidance, it included information delivered by nurses and physicians about leukemia and key aspects of informed consent. Parents were encouraged to be active participants in ICCs. Participants included 12 parents of children newly diagnosed with pediatric leukemia. The video was viewed by local pediatric oncologists prior to utilization with families. RESULTS: Ninety-two percent of parents reported that the video made it easier to understand information that their child's physician later provided; 83% of parents reported that it helped them to think of questions to ask the physician; and 67% of parents indicated that the video made them feel more comfortable with asking questions of the physician. Results of a t-test comparing question asking during ICCs revealed that parents who participated in the intervention asked a higher rate of questions than parents from a historical control sample (t = 1.95, P = 0.05). DISCUSSION: Our study supports the feasibility and potential efficacy of a brief video intervention employing anticipatory guidance to prepare parents for future discussions about RCTs.

Attentional retraining: a randomized clinical trial for pathological worry.

OBJECTIVE: Research has consistently shown that highly anxious individuals tend to show an attentional bias in favor of threat cues (i.e., a threat bias). Further, recent evidence suggests that it is possible to modify patterns of attention allocation for such stimuli and the resulting changes in attention allocation alter affective responses to stress. However, to date such changes in patterns of attention have been shown only over brief time intervals and only in non-anxious individuals who lack a pre-existing attentional bias. In contrast, the present study tested the efficacy of such attentional training in a sample of severe worriers over an extended period of time using psychometrically validated measures of anxiety and depression. METHOD: Twenty-four adult participants reporting severe worry were randomly assigned to receive five sessions of either computer-delivered attentional retraining or sham training. The study was conducted from January to August 2001 and June to August 2002. RESULTS: Significant Treatment Group X Time interactions were found for both threat bias (p=001) and a composite measure of anxious and depressive symptoms (p=.002). Compared to sham-training, the active retraining program produced significant reductions in both threat bias and symptoms. CONCLUSIONS: These data support the view that an attentional bias in favor of threat cues is an important causal factor in generalized anxiety and suggest that a computer-based attentional retraining procedure may be an effective component of treatment.

Anticipatory guidance to improve informed consent: a new application of the concept.

Although the concept of anticipatory guidance has long been used in general pediatrics to help prepare parents for what to expect in the coming months or year, this educational concept has not been transplanted for use in other contexts. The intervention described in this article uses the principles of anticipatory guidance in an effort to prepare parents of children with newly diagnosed acute leukemia for their upcoming discussions with their child's physician. Parents of children recently diagnosed with leukemia frequently feel overwhelmed and are anxious to discover what can be done to cure their child. By using the abilities of already medically trained oncology nurses and orienting them to conduct an intervention to educate, (empathize) emphasize, and prepare parents for the informed consent conference, this anticipatory guidance-based intervention was designed to target barriers to effective communication and increase the interactivity between families and health care providers.

The role of the consent document in informed consent for pediatric leukemia trials.

PURPOSE: To examine both the use of the consent document during the informed consent process for pediatric leukemia clinical trials, as well as relationships between the use of the document and parental understanding of essential elements of informed consent. METHODS: Participants included 140 parents of children diagnosed with pediatric leukemia. Informed consent conferences in which randomized clinical trials were discussed were observed, audiotaped, and coded for specific behaviors. Parents were also interviewed within 48 h of their participation in informed consent conferences. RESULTS: Observations revealed that 74% of cases included explanation of consent documents during consent conferences. Parents who reported that they read the consent document were more likely to understand differences between the clinical trial and off study therapy and were more likely to understand the right to withdraw. Reading of the consent document was not associated with understanding of voluntariness. In comparison to racial/ethnic majority parents, racial/ethnic minority parents were less likely to report that they read the consent document, understand voluntariness or the right to withdraw, and were less likely to be able to distinguish between the clinical trial and off study therapy. Low SES was associated with a lower probability of reading the consent document and being able to distinguish between clinical trials and off study therapy. CONCLUSIONS: Attention to the importance of reading the consent document and improving communication during consent conferences is likely to enhance understanding of essential elements of informed consent.

Temperament, anxiety, and the processing of threat-relevant stimuli.

This article discusses converging evidence from developmental, clinical, and cognitive psychology suggesting that there is significant overlap between research findings on affect, temperament, and attentional processes associated with pathological anxiety. We offer a proposal for the integration of these 3 areas aimed at developing a more clear understanding of the developmental sequence and operative mechanisms in the dysregulation of negative affect and the development of symptoms of anxiety pathology. We review evidence for a model indicating that reactive and effortful temperamental processes, possibly mediated by an attentional bias toward threat-relevant information, interact to produce problems of dysregulated negative affect and elevated levels of pathological anxiety. This model may assist in understanding the development of anxiety disorders, identifying children at risk for such disorders, and selecting points of entry for both preventative and curative interventions.