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Little is known about how nursing care at the end of a childs life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in childrens end-of-life care and parents qualitative perceptions. We used a mixed methods design, combining quantitative data from the RESTORE clinical trial with qualitative interviews with bereaved parents. Patients who died during RESTORE were included in quantitative analyses. A subset of their parents was interviewed 7 to 11 years later. The quantitative analyses included 104 children. Eight parents were interviewed; 4 had a child die after cancer, and 4 had a child die after a complex chronic illness. Quantitatively, patients pain and sedation scores were generally comfortable. Children died with multiple invasive devices in place. Parents descriptions of their childs comfort and critical care requirements differed by illness trajectory (cancer, complex chronic illness). Parents memories of their childs suffering aligned with peaks in clinical scores, rather than averages. Invasive devices and equipment altered parents ability to make meaningful final memories with the dying child. Pediatric intensive care clinicians may need to broaden how they attend to dying childrens pain and corresponding parental distress, as parents memories of their dying childs suffering persist for years.

Objective: Li-Fraumeni syndrome (LFS) is a rare hereditary cancer predisposition syndrome that significantly increases one's lifetime cancer risk from infancy to late adulthood. LFS is primarily caused by pathogenic autosomal dominant germline TP53 variants. Consequently, each naturally conceived biological child of an individual with a pathogenic variant has a 50% chance of inheriting it. This study examines the connections between family cancer history and reproductive beliefs within multigenerational family units including at least one member with TP53 -positive LFS. Method: Forty-five families enrolled in a protocol-specific cancer screening study completed 66 group interviews. An interdisciplinary team constructed a thematic codebook of inductive and deductive codes using interpretive description and modified ground theory to analyze data and then implemented a framework method to organize themes. Results: The following major themes were related to reproductive beliefs in the context of LFS: (a) tension between morality and generational cancer experiences, (b) discriminating between multiple moral frames (i.e., religion and risk reduction), and (c) impossible choices between one's own health and future children. Conclusions: Reproductive beliefs associated with LFS are distinct from other well-studied hereditary cancer syndromes. Families with LFS experience novel reproductive beliefs that may trigger moral distress. Reproductive LFS-tailored psychoeducational interventions and clinician awareness are needed. [ABSTRACT FROM AUTHOR]

ObjectiveOur objective was to identify patient, study, and site factors associated with assay sensitivity in placebo-controlled neuropathic pain trials.MethodsWe examined the associations between study characteristics and standardized effect size (SES) in a database of 200 publicly available randomized clinical trials of pharmacologic treatments for neuropathic pain.ResultsThere was considerable heterogeneity in the SESs among the examined trials. Univariate meta-regression analyses indicated that larger SESs were significantly associated with trials that had 1) greater minimum baseline pain inclusion criteria, 2) greater mean subject age, 3) a larger percentage of Caucasian subjects, and 4) a smaller total number of subjects. In a multiple meta-regression analysis, the associations between SES and minimum baseline pain inclusion criterion and age remained significant.ConclusionsOur analyses have examined potentially modifiable correlates of study SES and shown that a minimum pain inclusion criterion of 40 or above on a 0 to 100 scale is associated with a larger SES. These data provide a foundation for investigating strategies to improve assay sensitivity and thereby decrease the likelihood of falsely negative outcomes in clinical trials of efficacious treatments for neuropathic pain.

Objective(s): To assess the likelihood of ADHD diagnosis in children of non-US-born caregivers relative to children of US-born caregivers. Method: Cross-sectional analysis of a combined 2016 to 2019 National Survey of Children's Health dataset (n = 109,881) was performed to identify associations between caregiver's birth outside the U.S. and child's ADHD diagnosis. Logistic regression models adjusted for potential sociodemographic confounders. Results: Children with one or two non-US-born caregivers were less likely to be diagnosed with ADHD (aOR = 0.58, p <.001; aOR = 0.59, p <.001, respectively). Likelihood of a diagnosis increased as non-US-born caregivers spent more time in the US. After a diagnosis, children of two non-US-born caregivers were less likely to be treated with medication. Conclusion: The lower likelihood of ADHD diagnosis in children with non-US-born caregivers may reflect an increasing need for public health education to raise awareness about ADHD among this population and the development of culturally sensitive ADHD identification methodologies. [ABSTRACT FROM AUTHOR]

Doctoral student training has become focused in recent years on acquiring subject-area knowledge and research skills, rather than on teaching. This shift often leaves aspiring junior faculty feeling unprepared to address the demanding pedagogical requirements of the professoriate. In the area of social work, few programs contain a structured, required program of study that addresses issues unique to teaching in a school of social work. This article outlines a doctoral teaching workshop as a model framework for social work doctoral programs. Suggestions are provided for ways to incorporate such an effort into current social work doctoral education. (Contains 2 tables.)

Family life is altered irrevocably when a young parent is diagnosed with or dies from cancer. This article tracks the genesis and transformation of a comprehensive psychoeducational support and bereavement program for children, adolescents, and parents affected by cancer. From the inception of the program, families with parents in active treatment participated in time-limited support groups. When a parent died, families transitioned out of support and into bereavement groups. As the cancer experience became more chronic, families remained in these respective groups for longer periods of time. This required clinicians to reconsider group structure to avoid the additional losses incurred as newly bereaved families transitioned from one group to another. Restructuring the program allowed participants to remain in familiar environments and to experience greater support and continuity in their care. Children, teens, and parents made clinical gains in communicating their needs and feelings to loved ones. Further, children and teens stayed on track developmentally, academically, and socially. Clinicians structuring these programs must be skilled in working simultaneously in both support and bereavement modalities. Recommendations for self-care and supervision are suggested.

Background Rare diseases pose transitioning challenges owing to limited provider expertise and changing healthcare systems. The timeframe and developmental changes of emerging adulthood overlap with the transition of patients with cystinosis from pediatric to adult-oriented healthcare. Methods This study utilized techniques of qualitative grounded theory to explore the experiences of adults aged 18-47 with cystinosis, and their parents, with a focus on the transition to adulthood and adult-oriented care. Forty-six individuals from 21 families were recruited online and at cystinosis conferences to participate in focus groups and/or individual interviews. The constant comparative method was used to conduct both line-by-line and focused coding of verbatim transcripts. Results The following elements were reported to be critical to the transition to adulthood and adult-oriented care: gaining skills and responsibility for disease management, progressing toward autonomy while remaining connected to caregivers, and having strong communication with and between providers. Conclusions Data analysis identified behaviors and relationships that support and/or threaten autonomy and treatment adherence. Participants described institutional, relational, and practical barriers to transition. Suggestions for improving transitioning include: identifying patient/family strengths and improving pediatric-adult provider partnerships and communication. Further research is needed into the experience of patients before and after transition to adult-oriented care. Keywords Cystinosis * Transitioning * Adherence * Emerging adulthood * Grounded theory, Introduction Nephropathic cystinosis is a rare autosomal-recessive metabolic disorder with an estimated prevalence of 1 case per 100,000 to 200,000 live births [1]. There are believed to be 500 nephropathic [...]