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. METHODS: A total of 19 Spanish-speaking parents (15 mothers and 4 fathers) who were representative of the population of interest completed paper-and-pencil surveys, along with a cognitive interview. Preliminary data related to decision-making and goals of care, infant symptoms, and their experiences in the NICU were also collected. RESULTS: The internal reliability of the transcreated study instruments ranged from good to excellent (α= 0.82-0.99). Participants reported that study materials were not offensive and did not make them feel uncomfortable; however, they found some words/phrases to be confusing. Parents had the opportunity to provide suggested wording changes. IMPLICATIONS FOR PRACTICE AND RESEARCH: Language barriers and a lack of cultural responsiveness can affect the care that infants and their families receive. More accurate and culturally appropriate transcreation of study materials can remove barriers to research participation and facilitate better communication with non-English-speaking families, which may lead to the development of better-informed evidence-based interventions and clinical practices in the NICU.

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. Thus, we examined: (a) differences in parental depressive symptoms, parent-child communication, and sibling self-worth between bereaved and nonbereaved families and (b) indirect effects of parental depressive symptoms and communication quality on the association between bereavement and sibling self-worth. Bereaved parents and siblings were recruited 3-12 months after a child's death from cancer. Bereaved (n = 72) and nonbereaved families of classmates (n = 58) completed home-based questionnaires upon enrollment (T1), and 48 bereaved and 45 nonbereaved families completed 1-year follow-up (T2). Relative to controls at T1 and T2, bereaved mothers, but not fathers, reported more depressive symptoms. Bereaved siblings reported poorer maternal and similar paternal communication, and similar levels of self-worth compared to controls. Both cross-sectional and longitudinal serial mediation models for mothers were significant. Bereaved mothers were at greater risk for depressive symptoms, which adversely affected sibling self-worth over time through disrupted mother-child communication. The father sample was limited, but the cross-sectional model was nonsignificant. Mothers and fathers may grieve differently and may require different therapeutic approaches. Family-centered interventions should target bereaved mothers' emotional adjustment and communication to enhance sibling self-worth. Additionally, clinicians should bolster other sources of support for bereaved siblings to promote adaptive outcomes. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

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. However, previous research has utilized the standard translation-backtranslation method with which problems have been noted. PURPOSE: This article describes the planning, preparation, and action phases that were completed with the use of a community advisory board (CAB) to prepare and transcreate research study materials from English to Spanish for pilot testing. METHODS: Community members of interest were invited to form the CAB, and 2 meetings were held to review study materials in the English and Spanish versions. Prior to the second meeting, a professional translation company translated study materials from English to Spanish. RESULTS: Feedback from the CAB ensured consistent content and reading levels, and culturally appropriate language usage. The CAB also provided suggestions to the research protocol and advised sensitive methods of recruitment and measure administration. IMPLICATIONS FOR PRACTICE AND RESEARCH: More accurate and culturally appropriate transcreation of study measures can reduce barriers to research participation and facilitate better communication with non-English-speaking families in health equity research to better inform evidence-based interventions and clinical practices across diverse groups.

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. PAT-NICU/CICU scores were compared to a companion risk survey completed by NICU social workers. Test-retest reliability was assessed through repeated measures at 2-month follow-up. RESULTS: Analyses suggest the PAT-NICU/CICU is effective in classifying psychosocial risk. This is supported by statistically significant correlations between the PAT-NICU/CICU and validated measures, in addition to elevated scores on concurrent measures by risk classification. Internal consistency, test-retest reliability, and acceptability for the PAT-NICU/CICU were satisfactory. CONCLUSIONS: This preliminary study demonstrates the validity, reliability, and acceptability of the PAT-NICU/CICU as a psychosocial screening tool to aid identification of families who may benefit from supportive services during NICU admission. This new measure is a more comprehensive tool that assesses a wide variety of risk factors and stress responses. However, future studies of this measure are needed with more diverse samples. Prompt screening of NICU parents may facilitate earlier linkage with appropriate levels of resources or intervention. This research is crucial in improving risk assessment and psychosocial care for families in the NICU.

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

Objectives: 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.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: 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. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0-835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.

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. OBJECTIVE: Explore associations between parental perceptions of infant symptoms and suffering at EOL in the neonatal intensive care unit (NICU) and parent adjustment following the death. METHODS: Retrospective, cross-sectional pilot study involving parents of infants who died within the previous five years in a large, Midwestern, level IV NICU. Parents were recruited through mailed invitations, and 40 mothers and 27 fathers participated from 40 families. Parents retrospectively reported on infant symptom burden and suffering during the last week of life and the Impact of Events Scale-Revised (IES-R), and Prolonged Grief-13 (PG-13). Hierarchical regressions examined demographic/medical factors and parent perceptions at EOL in relation to post-traumatic stress symptoms (PTSS) and prolonged grief (PG). RESULTS: Clinical levels of PTSS (Mothers = 18%; Fathers = 11%) and PG (Mothers and Fathers = 3%) were low. Maternal perception of higher symptom burden was associated with greater PTSS, R2 = 0.46, P= 0.001, and PG, R2 = 0.47, P < 0.01. Paternal perception of greater infant suffering was associated with greater PTSS, R2 = 0.48, P= 0.001, and PG, R2 = .38, P < 0.01. CONCLUSION: Perceptions of symptoms and suffering were associated differently with mother and father adjustment after bereavement. While not necessarily causal, better symptom management at EOL could minimize distress for both infants and their parents.

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. OBJECTIVE: The objective of this descriptive study was to explore associations between nurse perceptions of infant well-being and self-reported distress. METHODS: Nurses caring for infants with potentially life-threatening/life-limiting conditions were recruited from a Level IV NICU in the Midwestern United States as a part of a study on infant symptom burden. Nurses reported their perceptions of infant well-being and their own distress on a 5-point Likert scale. Surveys were administered at the bedside weekly for up to 12 weeks, depending on length of stay. Infant suffering and QOL were examined in relation to nurse distress. A cross-classified multilevel model was used to account for dependence within nurse and within patient. RESULTS: A total of 593 surveys were collected from nurses. Using a cross-classified multilevel model with variables entered simultaneously, nurse perceptions of greater infant suffering and lower infant QOL were significantly associated with greater nurse distress. DISCUSSION: Preliminary evidence shows that greater perceived infant suffering and lower perceived infant QOL may be associated with greater levels of self-reported distress in NICU nurses. Further work is needed to better understand factors related to symptom management in the NICU and the potential role of caregiver distress and compassion fatigue in NICU nurses.

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. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.

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. METHODS: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death. RESULTS: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making. CONCLUSION: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.

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. Neonatal psychologists need specialized training that goes beyond the basic competencies of a psychologist and includes a wide range of learning across multiple domains, such as perinatal mental health, family-centered care, and infant development. Achieving competency will enable the novice neonatal psychologist to successfully transition into a highly complex, medical, fast-paced, often changing environment, and ultimately provide the best care for their young patients and families.

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. Adolescents with Blount disease (n = 9) were excluded. RESULTS: Prevalent musculoskeletal and LE pain were reduced by 40% within 12 months and persisted over 3 years. Adjusted models revealed a 6% lower odds of having musculoskeletal pain (odds ratio = 0.94, 95% confidence interval: 0.92-0.99) and a 10% lower odds of having LE pain (odds ratio = 0.90, 95% confidence interval: 0.86-0.95) per 10% reduction of BMI. The prevalence of poor physical function (Health Assessment Questionnaire Disability Index score >0) declined from 49% to <20% at 6 months (P < .05), Physical comfort and the physical component scores, measured by the Impact of Weight on Quality of Life - Kids and the Short Form 36 Health Survey, improved at 6 months postsurgery and beyond (P < .01). Poor physical function predicted persistent joint pain after MBS. CONCLUSIONS: Joint pain, impaired physical function, and impaired health-related quality of life significantly improve after MBS. These benefits in patient-reported outcomes support the use of MBS in adolescents with severe obesity and musculoskeletal pain and suggest that MBS in adolescence may reverse and reduce multiple risk factors for future joint disease.

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. METHODS/SEARCH STRATEGY: Bereaved parents of 40 infants (40 mothers and 27 fathers) retrospectively reported on their perceptions of infant symptoms and suffering during the last week of life. EMRs were also reviewed. FINDINGS/RESULTS: Parents were asked about their observations of 23 symptoms. Within the 27 parental dyads, mothers reported 6.15 symptoms (standard deviation = 3.75), which was not significantly different from fathers' report of 5.67 symptoms (standard deviation = 5.11). Respiratory distress, agitation, and pain were most common according to mothers and EMR, whereas respiratory distress, agitation, and lethargy were most common according to fathers. Few differences were found between mothers, fathers, and EMRs. However, missing data (range: 0%-20%) indicated that some parents had challenges assessing symptoms. Parents reported that the worst symptom was respiratory distress. In addition, parents reported moderate infant suffering, which was correlated with the total number of symptoms. IMPLICATIONS FOR PRACTICE: Parents demonstrate awareness of their infant's symptoms at EOL, and these observations should be valued as they closely parallel EMR documentation. However, some parents did have difficulty reporting symptoms, highlighting the importance of education. IMPLICATIONS FOR RESEARCH: Future larger sample research should prospectively examine parent perceptions of infant symptom burden, suffering, and associations with other infant and parent outcomes (eg, decision making and grief).

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. RESULTS: One in three adolescents reported internalizing symptoms, and one in five endorsed externalizing symptoms in the clinical range. Generalized linear model analysis demonstrated that increased risk of psychopathology for adolescents with severe obesity was associated with family dysfunction, eating pathology, family composition, and seeking behavioral intervention (versus WLS), whereas better quality of life (QOL) was associated with lower psychopathology. CONCLUSIONS: While psychopathology rates are comparable to national samples, there is a subgroup of youth who present for behavioral weight loss services and are at greater risk for psychopathology relative to national adolescent base rates. Adolescents who achieve candidacy for WLS may be a highly selective population of youth with severe obesity and may have lower base rates of psychopathology compared to NSComps.

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; 79.9% female, 66.2% White; Mbody mass index [BMI] = 51.5 kg/m(2)) and 83 nonsurgical comparisons (Mage = 16.1; 81.9% female, 54.2% White; MBMI = 46.9 kg/m(2)) documented self-reported CM (Childhood Trauma Questionnaire) and associations with psychopathology, quality of life, self-esteem and body image, high-risk behaviors, and family dysfunction. RESULTS: CM prevalence (females: 29%; males: 12%) was similar to national adolescent base rates. Emotional abuse was most prevalent. One in 10 females reported sexual abuse. For females, CM rates were higher in comparisons, yet correlates were similar for both cohorts: greater psychopathology, substance use, and family dysfunction, and lower quality of life. CONCLUSION: While a minority of adolescents with severe obesity reported a CM history, they carry greater psychosocial burden into the clinical setting.

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. RESULTS: Of the 2- to 5-year-olds seen at the center, 140 (94%) had a BMI >99th percentile. Of these children with severe obesity, 54% were female, 48% were Caucasian, and mean age was 4.60 years (SD = 1.00). Mean BMI and BMI z-score at initial visit was 26.5 kg/m(2) (SD = 4.12) and 3.59 (SD = 0.95), respectively. BMI z-scores varied significantly by age-χ(2)(3, N = 140) = 54.44, P < .001-and gender-χ(2)(1, N = 140) = -5.31, P < .001-with males and younger children presenting at much higher BMI z-scores. Most of the children had a family history of obesity, (85%), type 2 diabetes (74%), and hypertension (74%). Nearly one third of families reported history of mental health or substance abuse problems. Comorbidities were prevalent, particularly dyslipidemia and problematic eating behaviors. For the 53% of children who returned for at least one follow-up visit, mean BMI z-score decreased significantly by 0.15-t(79) = 5.31, P < .001. CONCLUSIONS: Our findings underscore the severity of the condition facing these children and their families. With improved retention, the tertiary care multidisciplinary program may be a viable option for successful intervention for these children.

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. METHODS: Thirty-two pediatric oncology fellows participated in a day-long workshop on palliative care, including topics on pain and symptom management, ethics, communication, and grief. Barriers, attitudes, and knowledge with regard to pediatric palliative care were assessed immediately before the workshop and 6 and 12 months later. Knowledge was also assessed immediately after the workshop. Twenty fellows completed all assessments. RESULTS: At 6 and 12 months, staff discomfort with death and lack of knowledge were the most frequently cited barriers to providing effective EOL care. Perceived competence and comfort in EOL care improved over time, while beliefs remained relatively open and stable. Overall knowledge of pediatric palliative care improved post-workshop and at 6 months, then stabilized. Knowledge of general pediatric issues, ethics, and communication did not change, while knowledge of pain management, symptom management, and grief showed initial improvement then varying patterns of change over time. CONCLUSIONS: Although perceived competence and comfort with palliative care improved, the workshop did not uniformly produce lasting improvements in knowledge. Sustained knowledge will likely require more intensive training in palliative care. Continued research and evaluation of similar educational programs are needed.

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. active drug assignment have important implications for planning future clinical trials. Parents and children reported greater distress, worry, and difficulty making the decision to join the trial compared with adult participants. Mothers and female participants were particularly interested in additional psychosocial support during the study. Random assignment was viewed negatively by both parents and children, and close observation for diabetes onset was viewed as the most favorable aspect of the study. Adherence to study procedures declined over time and behaviors outside the study protocol to prevent/delay diabetes onset were common, particularly among those who believed the participant was taking a placebo. Children and respondents who believed that the participant was taking the active drug expressed confidence in oral insulin's ability to delay or prevent type 1 diabetes. CONCLUSIONS: Although most participants were positive about the trial and many expressed optimism about the intervention's potential for success, future trials need to address negative reactions to random assignment, the unique concerns of children and their parents, declining adherence, and behaviors - external to the trial - designed to delay or prevent diabetes.

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. Parents rated the trial more favorably but worried about hypoglycemia and diabetes onset. Children had the least favorable reaction to the study. Parents preferred assignment to the intervention group; child/adult participants preferred assignment to the closely monitored group. The intervention group rated the annual 4-day insulin infusions more negatively than all other study procedures. Intervention group participants/parents reported poorer insulin injection adherence over the course of the study. Intervention group participants, parents, and female subjects expressed an interest in additional psychosocial support during the trial. Random assignment was viewed negatively by both study groups. Close observation for diabetes onset was viewed as the most favorable aspect of the study. Behaviors outside of the study protocol to prevent or delay diabetes onset were common and should be monitored in future prevention studies. CONCLUSIONS: Overall, most participants were positive about the trial, and many expressed optimism about the intervention's potential for success. These results have implications for study design, recruitment, and retention procedures in future prevention trials.

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. PROCEDURE: Fellows (N = 32) from 20 hospitals participated in one of two workshops covering palliative care topics, such as pain/symptom management, communication, ethics, and bereavement. Training, knowledge, behavior, and attitudes regarding pediatric palliative care were assessed before the workshop, and knowledge was re-assessed immediately afterwards. RESULTS: Fellows reported a general lack of training in EOL care, and only 41% rated their education as at least "somewhat" adequate. Colleagues and personal experience were more often sources on EOL care, rather than formal classes or textbooks. Although fellows reported open attitudes toward palliative care, such as involving adolescents in decision-making, only half felt comfortable in the presence of a dying person. Fewer than half felt comfortable providing EOL care, managing families' expectations, or knowledgeable enough to discuss hospice with patients/families. Following the workshop, knowledge of palliative care increased significantly from 75 to 85% correct. CONCLUSIONS: Fellows reported open beliefs about palliative care, but acknowledged weaknesses in their training and level of competence. The workshop showed efficacy in improving knowledge, but additional research is needed to evaluate larger educational initiatives and their long-term impact on clinical services and family satisfaction.

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 3.5 months after notification that assessed understanding of infant risk and psychologic response to the news. RESULTS: Most mothers (78.5%) were accurate in their understanding of infant risk at the initial interview, with a slight decline at the follow-up interview (73%). There was a significant increase in underestimation of risk from the initial (12%) to the follow-up interview (19%) (chi2 (1) = 6.0, P = .01). Mothers with less education, those from ethnic minority backgrounds, and those who were not married tended to be less accurate. Further, mothers who experienced more anxiety and fewer depressive symptoms in response to the news were more likely to be accurate. Likewise, underestimation of risk was associated with fewer anxiety and more depressive symptoms. CONCLUSION: This study highlights the complex picture of factors promoting maternal understanding of infant diabetes risk in a sample of mothers whose newborns had been identified as at increased risk for type 1 diabetes.