Quality of life of caregivers at the end of their child's pediatric cancer treatment: cancer-specific worry and material hardship.

Objective: Emerging research suggests that completion of pediatric cancer treatment can be challenging for caregivers given shifting roles and responsibilities. Lower caregiver quality of life (QOL) has been associated with cancer-related variables, higher cancer caregiving strain, and more household material hardship during pediatric cancer treatment. Caregiver QOL at the end of treatment has not been fully investigated but has implications for child and family well-being.

Caregiver condition management and family functioning after pediatric cancer treatment: Moderation by race and ethnicity.

Objective: End of pediatric cancer treatment requires family adjustment. Caregivers who struggle to incorporate the child's condition into family life have poorer family outcomes. To better understand factors that contribute to successful transition off active childhood cancer treatment, we sought to examine caregiver perceived management ability of the youth's condition and family functioning as predictors of caregiver distress, evaluate family functioning as a mediator between perceived ability and distress, and explore race and ethnicity as a moderator between perceived ability and family functioning.

Psychosocial needs of pediatric cancer patients and their caregivers at end of treatment: Why psychosocial screening remains important.

Objective: The pediatric cancer Psychosocial Standards of Care calls for psychosocial screening across the cancer trajectory. The current study aims to describe pediatric cancer family needs at the end of treatment (EOT) and summarize feedback on a clinical EOT screening and education program.

Methods: During a clinic visit, families attended an education session regarding general EOT considerations and caregivers and youth aged 11+ years completed questionnaires.

Health-Related Quality of Life at Diagnosis for Pediatric Thyroid Cancer Patients.

Context: Pediatric thyroid cancer (TC) incidence rates are increasing, yet TC has one of the highest survival rates. Despite increased prevalence, little is known about youth adjustment to TC, particularly compared to other pediatric cancers.

Objective: The current study sought to describe health-related quality of life (HRQoL) in pediatric TC patients early after diagnosis compared to other pediatric cancer patients and healthy youth and examine predictors of HRQoL.

Adherence and Barriers to Inpatient Physical Therapy Among Adolescents and Young Adults with Hematologic Malignancies.

This study described inpatient physical therapy (PT) adherence and barriers to inpatient PT among adolescents and young adults (AYAs) with hematologic malignancies receiving care at a Midwestern children's hospital. Forty-seven AYAs receiving care over a 2-year period were included. PT contact was established in 93% of hospitalizations.

Distress Trajectories for Parents of Children With DSD: A Growth Mixture Model.

Objective: This study identifies trajectories of parent depressive symptoms after having a child born with genital atypia due to a disorder/difference of sex development (DSD) or congenital adrenal hyperplasia (CAH) and across the first year postgenitoplasty (for parents who opted for surgery) or postbaseline (for parents who elected against surgery for their child). Hypotheses for four trajectory classes were guided by parent distress patterns previously identified among other medical conditions.

Methods: Participants included 70 mothers and 50 fathers of 71 children diagnosed with a DSD or CAH with reported moderate to high genital atypia.

Health Care Utilization, Transition Readiness, and Quality of Life: A Latent Class Analysis.

Objective: To identify possible subgroups of health care utilization (HCU) patterns among adolescents and young adults (AYAs) with a chronic medical condition (CMC), and examine how these patterns relate to transition readiness and health-related quality of life (HRQoL).

Methods: Undergraduates (N = 359; Mage=19.51 years, SD = 1.

Stigma by Association: Parent Stigma and Youth Adjustment in Inflammatory Bowel Disease.

Objective: Examine the indirect association between parents' experience of stigma (i.e., associative stigma) and youth depressive symptoms through the serial effects of associative stigma on parent and youth illness intrusiveness in pediatric inflammatory bowel disease (IBD).

Illness Uncertainty Longitudinally Predicts Distress Among Caregivers of Children Born With DSD.

Objective: A subset of parents of children with disorders/differences of sex development (DSD) including ambiguous genitalia experience clinically elevated levels of anxious and depressive symptoms. Research indicates that uncertainty about their child's DSD is associated with parent psychosocial distress; however, previous studies have been cross-sectional or correlational in nature. The current study is the first to examine the longitudinal trajectory of the relationship between caregiver-perceived uncertainty about their child's DSD and caregiver anxious and depressive symptoms across the first 12 months following genital surgery in young children, or if surgery was not performed, the first 12 months following study entry.

Psychological adjustment outcomes among pediatric brain tumor survivors: A meta-analysis.

Background: Pediatric brain tumor survivors (PBTS) are at significant risk for psychological adjustment difficulties, including greater depressive and anxious symptomology. Systematic reviews have identified this heightened risk among youth with medical conditions, but these reviews have not been specific to PBTS. Therefore, the current study aimed to directly examine the psychological adjustment of PBTS as compared to healthy peers.

The Relationship Between Parent Distress and Child Quality of Life in Pediatric Cancer: A Meta-Analysis.

Problem: Pediatric cancer places both parents and children at risk for psychosocial difficulties, including a specific risk for diminished quality of life. Previous research has identified relationships between parent and child psychosocial adjustment outcomes (e.g.

Barriers to care in pediatric cancer: The role of illness uncertainty in relation to parent psychological distress.

Objective: The current study evaluated perceived barriers to care for parents of children with cancer and the mediating effect of illness uncertainty (IU; uncertainty from the ambiguity or unpredictability of the illness) on the relationship between barriers and parental psychological distress. We hypothesized that greater barriers to care would be related to higher levels of IU and, in turn, higher anxiety, depression, and posttraumatic stress symptom (PTSS) ratings.

Methods: As part of an ongoing study of family adjustment to pediatric cancer, 145 caregivers of children diagnosed with cancer completed questionnaires assessing barriers to care, parent IU, and anxious symptoms, depressive symptoms, and PTSS.

Predictors of Psychosocial Distress in Parents of Young Children with Disorders of Sex Development.

Purpose: We evaluated demographic, financial and support predictors of distress for parents of young children with disorders of sex development including atypical genital development, and characterized early parental experiences. This work extends our previous findings to identify those parents at risk for distress.

Materials And Methods: Participants included mothers (76) and fathers (63) of a child (78) diagnosed with disorders of sex development characterized by moderate to severe genital atypia.

Featured Article: The Relationship Between Parent and Child Distress in Pediatric Cancer: A Meta-Analysis.

Objective: Parents and children affected by pediatric cancer are at risk for psychological distress, including depression, anxiety, and post-traumatic stress. A link is believed to exist between parent and child distress; however, no systematic analysis of this relationship has occurred. A meta-analysis was conducted to assess the relationship between parent and child distress among families affected by pediatric cancer.

Adverse Childhood Experiences and Chronic Medical Conditions: Emotion Dysregulation as a Mediator of Adjustment.

Adverse childhood experiences (ACEs) are known to contribute to long-term harmful effects on mental health in young adults. Research has demonstrated that having a chronic medical condition (CMC) can also be conceptualized as being a potentially traumatic experience, and that young adults with a CMC are also at risk for negative adjustment. Emotion dysregulation, or difficulty identifying and regulating one's emotions, is common among individuals with ACEs, and is a predictor of young adult adjustment.

The Role of Stigma in the Relationship Between Illness Intrusiveness and Adjustment in Adolescents and Young Adults: A Path Model.

Objective: Adolescents/Young Adults (AYAs) with a chronic illness display elevated risk for poor psychosocial outcomes, yet relatively little is known about factors that place these individuals at risk. Illness intrusiveness is a known predictor of negative psychosocial outcomes in AYAs. Illness-related stigma, an understudied concept in this population, may also be a key contributor to increased intrusiveness.

Baseline Characteristics of Infants With Atypical Genital Development: Phenotypes, Diagnoses, and Sex of Rearing.

Purpose: Little is known about the phenotypes, diagnoses, and sex of rearing of infants with atypical genital development in the United States. As part of a multicenter study of these infants, we have provided a baseline report from US difference/disorder of sex development clinics describing the diagnoses, anatomic features, and sex of rearing. We also determined whether consensus guidelines are followed for sex designation in the United States.

Transition readiness: The linkage between adverse childhood experiences (ACEs) and health-related quality of life.

Adverse childhood experiences (ACEs) are consistently associated with deleterious health outcomes in adolescence and adulthood. Although research has implicated health-risk behaviors as a possible link in this relationship, the role of health care management skills has yet to be examined in this context. Transition readiness, defined as health care management skills during the transition from adolescence to adulthood, may be relevant in understanding health risk among individuals with ACEs.

Post traumatic stress symptoms in parents of children with cancer: A mediation model.

Objective: Caregivers of pediatric cancer patients are at risk for posttraumatic stress symptoms (PTSS). Previous literature has identified caregiver illness uncertainty as a predictor of PTSS, yet little is known about the mechanism by which illness uncertainty may affect PTSS. Rumination, or perseverations about the cause and consequences of an event, has been related to posttraumtic stress disorder in other populations.

Preliminary exploration of secondhand smoke exposure in youth with Sickle Cell Disease: biochemical verification, pulmonary functioning, and health care utilization.

Exposure to secondhand smoke (SHSe) can compound an already challenging set of health problems for youth with Sickle Cell Disease (SCD). Exposure to electronic cigarettes may also impact SCD symptomology and respiratory functioning. This study built on these previous findings by a) utilizing two objective measures of SHSe, salivary cotinine and exhaled carbon monoxide and b) examining the association of SHSe with emergency department utilization, physician-reported sickle cell crises, and pulmonary functioning.

Exploratory Factor Analysis of the Mishel Uncertainty in Illness Scale Among Adolescents and Young Adults With Chronic Medical Conditions.

Objective: To identify a developmentally relevant factor structure of the Mishel Uncertainty in Illness Scale-Community form (MUIS-C) among adolescents and young adults with chronic medical conditions.

Methods: Data on college students with a self-reported chronic medical condition (N = 238) were collected between November 2013 and May 2015. Participants completed the MUIS-C as part of a larger questionnaire battery.

Grit, Illness-Related Distress, and Psychosocial Outcomes in College Students With a Chronic Medical Condition: A Path Analysis.

Objective: Adolescents and young adults (AYAs) with chronic medical conditions are at increased risk for a host of negative psychosocial outcomes, including depressive and anxious symptoms. Although studies have shown that illness appraisals (e.g.