Adrenal Insufficiency in Young Children: a Mixed Methods Study of Parents’ Experiences

Research into adrenal insufficiency (AI) and congenital adrenal hyperplasia (CAH) in children has focused largely on clinical consequences for patients; and until recently, the wider experience of the condition from the perspective of other family members has been neglected. In a mixed methods study, we captured the experiences of parents of young children affected by AI/CAH, including their views on the psychosocial impact of living with and managing the condition. Semi-structured interviews were carried out in the UK and an online survey was developed, translated and disseminated through support groups (UK and the Netherlands) and outpatient endocrinology clinics (Germany). Challenges associated with diagnosis, treatment, support and the future were identified. For UK parents, the diagnosis period was characterised by a lack of awareness amongst healthcare professionals and occurrences of adrenal crisis. Parents reported burden, anxiety and disruption associated with the intensive treatment regimen. Parents adjusted and gained confidence over time yet found delegating responsibility for medication difficult and worried about the future for their child. Access to psychological support and contact with other families was reported as highly beneficial. The findings of the study provide critical context for future studies and for informing how parents and families can be better supported. Prenatal genetic counselling for parents who already have an affected child will include an explanation of recurrence risk but should also focus on providing information and reassurance about diagnostic testing and care for their newborn.     

Genetic Counseling,Professional Values,and Habitus: An Analysis of Disability Narratives in Textbooks

This article analyzes narrative illustrations in genetic counseling textbooks as a way of understanding professional habitus--the dispositions that motivate professional behavior. In particular, this analysis shows that there are significant differences in how the textbooks' expository and narrative portions represent Down syndrome, genetic counseling practice, and patient behaviors. While the narrative portions of the text position the genetic counseling profession as working in service to the values of genetic medicine, the expository portions represent genetic counselors as neutral parties. Ultimately, this article argues that this ambiguity is harmful to the production of a professional habitus that is consistent with espoused professional values concerning respect for persons with disabilities and the promotion of psychosocial counseling.     

Evaluation of a Sesame Street Multimedia Intervention for Families Transitioning Out of the Military

Although transitioning out of the military can be stressful for everyone in the family, the children’s experience has received minimal attention in both clinical lore and research. This study is an evaluation of Sesame Workshop’s multimedia program for families who are transitioning out of the military into civilian life; the program is aimed at improving parents’ confidence and skills in assisting their children with the transition, and at improving young children’s transition-related adjustment. Via a randomized controlled trial design, we evaluated the utilization, acceptability, and impact of this free, online program with 200 military caregivers. Caregivers who received the Sesame program reported increased self-efficacy in helping their child cope with the transition (e.g., making new friends, talking with their child about leaving the military) compared to those assigned to the control condition. Further, caregivers in the intervention condition reported fewer overall child emotional and behavioral problems and a significant reduction in levels of hyperactivity/inattention in their children. Further, the primarily online modality of the Sesame program yielded high caregiver satisfaction and utilization; this approach may warrant further research as an effective means of reaching busy military families.     

Differences in brain morphology and working memory capacity across childhood

Working memory (WM) skills are closely associated with learning progress in key areas such as reading and mathematics across childhood. As yet, however, little is known about how the brain systems underpinning WM develop over this critical developmental period. The current study investigated whether and how structural brain correlates of components of the working memory system change over development. Verbal and visuospatial short‐term and working memory were assessed in 153 children between 5.58 and 15.92 years, and latent components of the working memory system were derived. Fractional anisotropy and cortical thickness maps were derived from T1‐weighted and diffusion‐weighted MRI and processed using eigenanatomy decomposition. There was a greater involvement of the corpus callosum and posterior temporal white matter in younger children for performance associated with the executive part of the working memory system. For older children, this was more closely linked with the thickness of the occipitotemporal cortex. These findings suggest that increasing specialization leads to shifts in the contribution of neural substrates over childhood, moving from an early dependence on a distributed system supported by long‐range connections to later reliance on specialized local circuitry. Our findings demonstrate that despite the component factor structure being stable across childhood, the underlying brain systems supporting working memory change. Taking the age of the child into account, and not just their overall score, is likely to be critical for understanding the nature of the limitations on their working memory capacity.     

Non-Suicidal Self-Injury in Pediatric Bipolar Disorder: Clinical Correlates and Impact on Psychosocial Treatment Outcomes

Non-suicidal self-injury (NSSI) in childhood is not well documented, especially among youth with pediatric bipolar disorder (PBD). The current study evaluated prevalence and correlates of NSSI, and its impact on intervention response, in a randomized trial of Child- and Family-Focused Cognitive-Behavioral Therapy (CFF-CBT) versus Treatment As Usual (TAU), adjunctive to pharmacotherapy. This study included 72 children ages 7–13 (58% male) with PBD. NSSI and correlates were assessed at baseline; mood and psychiatric severity were measured longitudinally. NSSI was common: 31% endorsed NSSI behaviors; 10% reported thoughts of NSSI, in the absence of behaviors. Children engaging in NSSI reported higher depression, psychosis, suicidality, and hopelessness; lower self-esteem; and reduced family help-seeking in univariate analyses. In a multivariate logistic regression, high child depression and psychosis, and low family help-seeking, remained significantly associated with baseline NSSI. In mixed-effects regression models, presence of NSSI at baseline did not influence the response of depressive symptoms to treatment. Children who endorsed NSSI experienced steeper response trajectories for psychiatric severity, regardless of treatment group. Youth who denied NSSI showed poorer response to TAU for manic symptoms; mania trajectories in CFF-CBT were similar across youth. Thus, NSSI in PBD is common and associated with impairment. As children might engage in NSSI for different reasons, the function of NSSI should be considered in treatment. Since children without NSSI fared worse in TAU, it may be important to ensure that youth with PBD receive structured, intensive interventions. CFF-CBT was efficacious regardless of NSSI, and thus shows promise for high-risk children with PBD.     

When Extremists Win: Cultural Transmission Via Iterated Learning When Populations Are Heterogeneous

How does the process of information transmission affect the cultural or linguistic products that emerge? This question is often studied experimentally and computationally via iterated learning, a procedure in which participants learn from previous participants in a chain. Iterated learning is a powerful tool because, when all participants share the same priors, the stationary distributions of the iterated learning chains reveal those priors. In many situations, however, it is unreasonable to assume that all participants share the same prior beliefs. We present four simulation studies and one experiment demonstrating that when the population of learners is heterogeneous, the behavior of an iterated learning chain can be unpredictable and is often systematically distorted by the learners with the most extreme biases. This results in group‐level outcomes that reflect neither the behavior of any individuals within the population nor the overall population average. We discuss implications for the use of iterated learning as a methodological tool as well as for the processes that might have shaped cultural and linguistic evolution in the real world.     

Parents’ Beliefs about Children’s Emotions and Parents’ Emotion-Related Conversations with Their Children

The goals of the current study were to describe parents’ emotion socialization patterns and to assess relations between parents’ emotion-related beliefs and socialization behaviors during conversations with their children. Participants were 125 parents and their 9- and 10-year-old children from three ethnic groups in the southeastern United States. Parents reported beliefs about children’s emotions. Parents and children were videotaped playing a board game to evoke emotion-related conversations, which were then coded for parents’ labeling, teaching, and encouragement of emotion. Parents used less labeling and teaching for positive than negative emotions, and greater encouragement for positive than negative emotions. Parents with stronger beliefs about the value of positive emotions engaged in less labeling of positive emotions, less teaching of all emotions, and less encouragement of negative emotions. Parents with stronger beliefs about the value of negative emotions engaged in more encouragement of negative emotions. Parents with stronger beliefs that all emotions are dangerous engaged in less labeling of negative emotions. The results of this study have potential clinical implications in helping clients to understand the foundational structures of their behaviors and how both beliefs and behaviors are distinct, yet interrelated constructs.     

Reasons for the “after-school pressure cooker” in Affluent Communities: It’s Not How Much Time,but Why

This study extends the over-scheduling hypothesis literature by focusing on affluent adolescents and exploring relations between psychosocial adjustment and reasons for organized activity (OA) involvement rather than focusing solely on time spent in OAs. Variable- and person-centered analyses were used to evaluate associations between intensity of OA participation and reasons for involvement, perceived parental pressure, and adjustment (depressive symptoms, anxiety symptoms, life satisfaction) in a sample of 10th graders (N = 122) from affluent communities. When adolescents’ perceptions of parental pressure were controlled for in analyses, more intensely involved youth reported lower levels of depressive symptoms. “For Fun” was the most highly rated reason for involvement and was linked to lower levels of perceived parental pressure, but was unrelated to all indicators of adjustment. Conversely, involvement in OAs “for Parents” was linked to more perceived parental pressure and lower levels of life satisfaction. Two OA participant profiles emerged in person-centered analyses: (1) primarily intrinsic reasons (high Fun, moderate Future, low Parents) and (2) intrinsic and extrinsic reasons (high Fun, high Future, high Parents) for involvement. OA participation simultaneously motivated by extrinsic and intrinsic reasons was linked to fewer psychosocial benefits than intrinsically motivated OA involvement.