Psychologists as leaders in equitable science: Applications of antiracism and community participatory strategies in a pediatric behavioral medicine clinical trial.

Psychologists have an ethical responsibility to advance health equity and can play a significant role in improving health care experiences for families racialized as Black, including those with sickle cell disease (SCD), a group of genetic blood disorders primarily affecting communities of color. Parents of children with SCD report experiences of stigma and discrimination due to racism in the health care system. The current commentary describes the application of antiracism and participatory strategies to the research design, implementation, and dissemination of a behavioral medicine clinical trial (Engage-HU; NCT03442114) of shared decision-making (SDM) for pediatric patients with SCD, including (a) the development of a research question to promote justice for racialized groups; (b) a focus on "redressing imbalances" through SDM and a multidisciplinary, inclusive research team led by a Black psychologist; (c) community participatory approaches through the integration of stakeholder feedback across the study; and (d) centering context by attending to structural realities in response to the COVID-19 and racism pandemics.

Diversity, Equity, and Inclusion within Pediatric Adherence Science.

Given the long-standing history of systemic racism in psychological science, diversity, equity, and inclusion (DEI) efforts are increasingly vital to the advancement and improvement of the field. This commentary extends the seminal work of the article Upending Racism in Psychological Science: Strategies to Change How Our Science is Conducted, Reported, Reviewed, and Disseminated (Buchanan et al., Am Psychol, https://doi.

Randomized trial of lung hyperinflation therapy in children with congenital muscular dystrophy.

Objective: Respiratory compromise in congenital muscular dystrophy (CMD) occurs, in part, from chest wall contractures. Passive stretch with hyperinsufflation therapy could reduce related costo-vertebral joint contractures. We sought to examine the impact of hyperinsufflation use on lung function and quality of life in children with CMD.

Measurement in pediatric epilepsy self-management: A critical review.

Unlabelled: Given the paucity of information available regarding self-management, the aims of this paper are to synthesize the literature on factors associated with and measures to assess self-management in pediatric epilepsy.

Inclusion Criteria: youth birth to 18 years with a seizure disorder or an epilepsy diagnosis and/or their caregivers, published 1985-2014 in English, and conducted in countries with a very high human development index. The review was conducted in 6 phases: (1) identification of bibliographical search criteria and databases; (2) abstract assessment; (3) full article review; (4) organization of final citations into categories; (5) identification of predictors, potential mediators/moderators, and outcomes associated with self-management factors and categorization of factors as influences, processes, or behaviors across individual, family, community, and health care domains; and (6) critique of self-management instrument studies.

Assessing barriers to adherence in routine clinical care for pediatric kidney transplant patients.

Patient-identified barriers to immunosuppressive medications are associated with poor adherence and negative clinical outcomes in transplant patients. Assessment of adherence barriers is not part of routine post-transplant care, and studies regarding implementing such a process in a reliable way are lacking. Using the Model for Improvement and PDSA cycles, we implemented a system to identify adherence barriers, including patient-centered design of a barriers assessment tool, identification of eligible patients, clear roles for clinic staff, and creating a culture of non-judgmental discussion around adherence.

Rebellious Behaviors in Adolescents With Epilepsy.

Objectives: The study aims are to (1) examine the prevalence of risk-taking (i.e., behaviors that can be categorized as rebellious or reckless) and (2) determine the influence of risk-taking on adherence, seizures, and health-related quality of life (HRQOL) in adolescents with epilepsy.

Self-management interventions in pediatric epilepsy: What is the level of evidence?

Objective: To respond to recommendations put forth by the Institute of Medicine to improve self-management resources for youth with epilepsy by conducting a systematic review of the self-management literature in pediatric epilepsy.

Methods: Inclusion criteria: youth birth to 18 years with a seizure disorder or an epilepsy diagnosis and/or their caregivers, published 1985-2014 in English, and conducted in countries with a very high human development index. Abstract and keywords had to explicitly refer to "self-care" (pre-1996) and/or self-management (post-1996).

Adherence and barriers to hyperinsufflation in children with congenital muscular dystrophy.

Background: Congenital muscular dystrophy (CMD) is a rare, inherited neuromuscular disease characterized by progressive muscle weakness, thoracic insufficiency, and ultimately respiratory failure. Adherence to respiratory therapies in children with neuromuscular disorders is unknown. This study examined the multimodal assessment of adherence and barriers to 15 min, twice daily hyperinsufflation in children with CMD.

Predictors of health-related quality of life over time among pediatric hematopoietic stem cell transplant recipients.

Background: Advances in hematopoietic stem cell transplantation (HSCT) have contributed to increased survival for pediatric patients. However, there are inconsistent findings regarding the impact of HSCT on health-related quality of life (HRQOL) outcomes for children. This study aimed to establish trajectories of HRQOL following HSCT and identify predictors of the HRQOL course.

Predictors of trajectories of epilepsy-specific quality of life among children newly diagnosed with epilepsy.

Objective: The objective of this study was to identify two-year trajectories of epilepsy-specific health-related quality of life (HRQOL) among children newly diagnosed with epilepsy and to evaluate the predictive value of a comprehensive set of medical, psychosocial, and family factors.

Methods: Ninety-four children with epilepsy (8.14 ± 2.

Antiepileptic drug nonadherence predicts pediatric epilepsy seizure outcomes.

Objective: The aim of the study was to determine sociodemographic, biological epilepsy-specific, and adherence predictors of long-term pediatric seizure outcomes.

Methods: This study is a prospective, longitudinal, observational study of antiepileptic drug (AED) adherence and seizure outcomes in children with newly diagnosed epilepsy. Patients were recruited from April 2006 to March 2009 and followed for 2 years.

Examining perceived stigma of children with newly-diagnosed epilepsy and their caregivers over a two-year period.

The purpose of this study was to examine the following: 1) the course of perceived epilepsy-related stigma among children newly diagnosed with epilepsy (n=39) and their caregivers (n=97) over a two-year period, 2) the influence of seizure absence/presence on children and caregivers' perception of epilepsy-related stigma, and 3) the congruence of child and caregiver perception of child epilepsy-related stigma. Participants completed a measure of perceived epilepsy-related stigma at three time points, and seizure status was collected at the final time point. Results indicated that both caregivers (t(1,76)=-2.

A 3-year prospective study of parent-child communication in early adolescents with type 1 diabetes: relationship to adherence and glycemic control.

Objective: To examine changes in parent-child communication patterns and their relation to glycemic control and treatment adherence using observational data in a 3-year prospective multisite study of youth with type 1 diabetes aged 9-11 years at baseline and their families (n = 217).

Methods: Adolescents and caregivers participated in a diabetes problem-solving discussion. Families were rated on negative and positive communication and interactions using the Interaction Behavior Code.

Parent and family stress factors predict health-related quality in pediatric patients with new-onset epilepsy.

Objective: To examine the influence of parent and family general and epilepsy-related stress on longitudinal generic and epilepsy-specific health-related quality of life (HRQOL) for children with new-onset epilepsy, while controlling for demographic characteristics, disease factors, and antiepileptic drug (AED) adherence.

Methods: This prospective, longitudinal study included 124 children with new-onset epilepsy (mean age 7.2 years, standard deviation [SD] 2.

Autonomy support and responsibility-sharing predict blood glucose monitoring frequency among youth with diabetes.

Objective: Adolescence poses a number of special challenges for youth and their families managing the Type 1 diabetes medical regimen. Little is known on how family and youth factors and management of the regimen change over the course of early adolescence and predict adherence to the regimen during this developmental period.

Methods: Youth with Type 1 diabetes (n = 239) and their maternal caregivers completed measures of diabetes-specific autonomy support, diabetes-related family conflict, regimen responsibility, and blood glucose monitoring frequency (BGMF) at 4 timepoints over a 3-year period.

Assessing psychosocial risk in pediatric inflammatory bowel disease: validation of the Psychosocial Assessment Tool 2.0_General.

Aim: The aim of this study was to present the preliminary psychometric properties of the Psychosocial Assessment Tool 2.0_General (PAT2.0_GEN), a brief screener for psychosocial risk in families of children with inflammatory bowel disease (IBD).