Pilot Testing Transcreated Spanish-Language Study Materials for Symptom Research With Infants and Parents in the Neonatal Intensive Care Unit.

Background: Rising admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) have increased the number of non-English-speaking individuals who may wish to participate in research studies. However, a lack of appropriately translated research study materials may limit the opportunity for these families to be involved in research that could impact the care that infants and families receive in the NICU.

Purpose: The primary purpose was to pilot test study materials that were transcreated from English to Spanish with the assistance of a bilingual community advisory board with Spanish-speaking parents of NICU infants.

Associations between parental depression, communication, and self-worth of siblings bereaved by cancer.

A child's death from cancer may increase the risk for poor self-worth in bereaved siblings. Furthermore, bereaved parents may experience depressive symptoms and communicate differently with their surviving children. However, limited research has examined family factors associated with self-worth in bereaved siblings.

Inclusion of Spanish-Speaking Families in NICU Symptom Research Using a Community Advisory Board.

Background: Admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) are rising, yet knowledge regarding their experiences is limited. Non-English-speaking families are often excluded from research because study measures are not available in their language. The inclusion of these families in NICU research is crucial to understand the impact of cultural and language barriers in infant and family care, and the translation of study measures into Spanish could better ensure that these families' perspectives are included.

Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit.

About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms. To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period.

Preliminary Validation of the Psychosocial Assessment Tool in the Neonatal Intensive Care Unit.

Objective: Research suggests families whose infants are admitted to the Neonatal Intensive Care Unit (NICU) experience elevated distress and may have pre-existing risk factors for maladjustment. This study sought to validate the newly developed Psychosocial Assessment Tool (PAT-NICU/Cardiac Intensive Care Unit [CICU]), a comprehensive screening measure for family psychosocial risk in the NICU.

Methods: The sample included 171 mothers, who completed the PAT-NICU/CICU and other related measures within 2 weeks of their infant's NICU admission at a level 4 unit within a large pediatric hospital.

Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU.

Context: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved parents is largely unknown.

Perceived Infant Well-Being and Self-Reported Distress in Neonatal Nurses.

Background: Infants who are admitted to a neonatal intensive care unit (NICU) may experience significant symptom burden. Parents are often distressed by these symptoms, which can affect their long-term coping and distress. There is limited research examining nurse perceptions of infant well-being (symptoms, suffering, and quality of life [QOL]) and associations with nurse distress.

Bereaved Parents' Perceptions of Infant Suffering in the NICU.

Context: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering.

Objectives: To examine bereaved parents' perceptions of infant suffering in the NICU.

Essential Knowledge and Competencies for Psychologists Working in Neonatal Intensive Care Units.

A training and competencies workgroup was created with the goal of identifying guidelines for essential knowledge and skills of psychologists working in neonatal intensive care unit (NICU) settings. This manuscript reviews the aspirational model of the knowledge and skills of psychologists working in NICUs across six clusters: Science, Systems, Professionalism, Relationships, Application, and Education. The purpose of these guidelines is to identify key competencies that direct the practice of neonatal psychologists, with the goal of informing the training of future neonatal psychologists.

Musculoskeletal Pain, Physical Function, and Quality of Life After Bariatric Surgery.

Objectives: To evaluate the longitudinal effects of metabolic and bariatric surgery (MBS) on the prevalence of musculoskeletal and lower extremity (LE) pain, physical function, and health-related quality of life.

Methods: The Teen Longitudinal Assessment of Bariatric Surgery study (NCT00474318) prospectively collected data on 242 adolescents undergoing MBS at 5 centers over a 3-year follow-up. Joint pain and physical function outcomes were assessed by using the Health Assessment Questionnaire Disability Index, Impact of Weight on Quality of Life - Kids, and the Short Form 36 Health Survey.

Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU.

Background: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU.

Multiple Perspectives of Symptoms and Suffering at End of Life in the NICU.

Background: Despite technological advances in the neonatal intensive care unit, not all infants survive. Limited research has focused on infants' symptoms and suffering at end of life (EOL) from multiple perspectives.

Purpose: To compare retrospective parent report and electronic medical record (EMR) documentation of symptoms and to examine associations with parent perceptions of infants suffering at EOL.

A multisite view of psychosocial risks in patients presenting for bariatric surgery.

Objective: The psychosocial health of adolescents with severe obesity (BMI ≥ 120% for age and gender) has only recently been the focus of empirical work.

Methods: This multisite study-an ancillary to a prospective longitudinal observational study documenting health in adolescents having weight loss surgery (WLS)-presents preoperative/baseline data from 141 WLS adolescents and 83 nonsurgical comparisons (NSComps). Self-report data from adolescent and caregiver dyads characterize adolescent psychopathology and potential correlates.

Child Maltreatment and the Adolescent Patient With Severe Obesity: Implications for Clinical Care.

Objective: To characterize prevalence and correlates of child maltreatment (CM) in a clinical sample of adolescents with severe obesity.

Method: Multicenter baseline data from 139 adolescents undergoing weight loss surgery (Mage = 16.9; 79.

Severely obese preschoolers in a tertiary care obesity program: characteristics and management.

Objectives: To describe the characteristics and management of severely obese 2- to 5-year-olds children referred to a tertiary care multidisciplinary obesity center.

Methods: A retrospective chart review was conducted of children 2 to 5 years old evaluated at the center from January 2009 to February 2011. Referral eligibility was a body mass index (BMI) ≥95th percentile.

Longitudinal evaluation of a pediatric palliative care educational workshop for oncology fellows.

Purpose: Health care providers have reported inadequate training, poor institutional support, and discomfort in managing pediatric end-of-life (EOL) issues. As a result, the transition to palliative care may be late and abrupt, and children may experience significant suffering at EOL. In this pilot study, we developed and longitudinally evaluated the efficacy of a pediatric palliative care workshop to enhance training for medical fellows.

Participant and parent experiences in the oral insulin study of the Diabetes Prevention Trial for Type 1 Diabetes.

Objective: To assess the experiences of participants and parents of children in the oral insulin study of the Diabetes Prevention Trial - Type 1.

Method: Before trial results were publicized, surveys were completed by 124 participants and 219 parents of children in the oral trial.

Results: Although most of those surveyed were positive about the trial, survey results suggest that participant perspective (adult, child, parent, and gender), study procedures, and beliefs about placebo vs.

Participant and parent experiences in the parenteral insulin arm of the diabetes prevention trial for type 1 diabetes.

Objective: To assess participant and parent experiences in the parenteral insulin arm of the Diabetes Prevention Trial for Type 1 Diabetes (DPT-1).

Research Design And Methods: Before trial results were publicized, surveys were completed by 82 intervention participants (the intervention group) (who received annual 4-day insulin infusions and daily insulin injections), 81 closely monitored control subjects (the closely monitored group), and 135 parents of children in the trial.

Results: Survey results suggest that participant perspective (adult, child, parent, and sex), study procedures, and group assignment have important implications when planning clinical trials.

Maternal understanding of infant diabetes risk: differential effects of maternal anxiety and depression.

Purpose: This study describes maternal understanding of infant risk associated with newborn genetic screening for type 1 diabetes.

Methods: Mothers of at-risk infants (n = 195), identified through the Prospective Assessment of Newborns for Diabetes Autoimmunity study, were notified of risk status by standardized script. Mothers participated in structured telephone interviews 1 and 3.

Evaluation of a pediatric palliative care educational workshop for oncology fellows.

Background: Recent efforts have focused on improving pediatric palliative care to relieve physical and psychological suffering throughout the course of illness, as well as to improve care at the end-of-life (EOL). One area of attention has been medical training, as healthcare providers have often reported feeling ill-equipped to manage EOL issues. As a pilot study, we developed and evaluated a daylong educational workshop on pediatric palliative care for oncology fellows.

Parent perceptions of nutritional issues during their child's treatment for cancer.

To examine family mealtime interactions, parental concerns about nutrition, and body mass index (BMI) among children with cancer who did not have primary central nervous system involvement. Parents of 95 children receiving treatment for cancer and 95 comparisons completed the About Your Child's Eating-Revised (AYCE-R) measure. Anthropometric data for children with cancer were obtained from medical charts at diagnosis and again when the AYCE-R was administered.

Maternal efforts to prevent type 1 diabetes in at-risk children.

Objective: The aim of this study was to assess maternal diabetes prevention efforts aimed at children identified as at risk through newborn genetic screening.

Research Design And Methods: A total of 192 mothers of children identified as at risk for type 1 diabetes through newborn genetic screening were administered a structured interview 3.6 +/- 0.

Maternal anxiety associated with newborn genetic screening for type 1 diabetes.

Objective: To describe maternal anxiety associated with newborn genetic screening for type 1 diabetes during the first year after risk notification.

Research Design And Methods: Mothers of at-risk infants (n = 435), identified through newborn genetic screening as part of the Prospective Assessment of Newborn for Diabetes Autoimmunity (PANDA) study, were administered a short form of the State Trait Anxiety Inventory (STAI) during telephone interviews approximately 3.5 weeks, 4 months, and 1 year after risk notification.