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).

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.

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.

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.

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.

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.

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.

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. No differences in mealtime interactions were found between children with cancer and comparisons, but parents of children with cancer reported greater concern about their child's weight. Anthropometric measures for children with cancer were consistent with national norms. However, children with cancer were somewhat underweight at diagnosis and became heavier over time. Lower BMI was associated with mother and father report of greater resistance from the child at mealtime, father report of his own aversion to family meals, and more severe treatment. The impact of cancer on family mealtime interactions and BMI appeared minimal during treatment. However, further longitudinal research is needed given the risk for late effects, such as growth problems and obesity, among cancer survivors. Families also may benefit from ongoing education to optimize healthy lifestyles among survivors.