Development of a blueprint for sibling psychosocial services: A nationwide study.

BACKGROUND: Siblings of youth with cancer have heightened risk for poor long-term psychosocial outcomes. Although sibling psychosocial care is a standard in pediatric oncology, this standard is among those least likely to be met. To address barriers to providing sibling services, a blueprint for systematic psychosocial screening and support of siblings was developed based on feedback from a national sample of psychosocial providers. PROCEDURE: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) of various disciplines working in US pediatric cancer centers, varied in size, type, and extent of sibling support. Interviews queried providers' suggestions for the future of sibling psychosocial care and impressions of a blueprint for sibling service delivery, which was iteratively refined based on respondents' feedback. Interviews were analyzed using applied thematic analysis. RESULTS: Based on existing literature and refined according to providers' recommendations, the Sibling Services Blueprint was developed to provide a comprehensive guide for systematizing sibling psychosocial care. The blueprint content includes: (i) a timeline for repeated sibling screening and assessment; (ii) a stepped model of psychosocial support; (iii) strategies for circumventing barriers to sibling care; and (iv) recommendations for how centers with varying resources might accomplish sibling-focused care. The blueprint is available online, allowing providers to easily access and individualize the content. Providers indicated enthusiasm and high potential utility and usability of the blueprint. CONCLUSIONS: The Sibling Services Blueprint may be a useful tool for systematizing sibling psychosocial care, promoting wider availability of sibling-focused services, and addressing siblings' unmet needs.

Don't chase the adenoma: A probabilistic approach to imaging before parathyroidectomy.

BACKGROUND: Preoperative imaging before parathyroidectomy can localize adenomas and reduce unnecessary bilateral neck explorations. We hypothesized that (1) the utility of preoperative imaging varies substantially depending on the preoperative probability of having adenoma(s) and (2) that a selective imaging approach based on this probability could avoid unnecessary patient costs and radiation. METHODS: We analyzed 3,577 patients who underwent parathyroidectomy for primary hyperparathyroidism from 2001 to 2022. The predicted probability of patients having single or double adenoma versus hyperplasia was estimated using logistic regression. We then estimated the relationship between the predicted probability of single/double adenoma and the likelihood that sestamibi or 4-dimensional computed tomography was helpful for operative planning. Current Medicare costs and published data on radiation dosing were used to calculate costs and radiation exposure from non-helpful imaging. RESULTS: The mean age was 62 ± 13 years; 78% were women. Adenomas were associated with higher mean calcium (11.2 ± 0.74 mg/dL) and parathyroid hormone levels (140.6 ± 94 pg/mL) than hyperplasia (9.8 ± 0.52 mg/dL and 81.4 ± 66 pg/mL). The probability that imaging helped with operative planning increased from 12% to 65%, as the predicted probability of adenoma increased from 30% to 90%. For every 10,000 patients, a selective approach to imaging that considered the preoperative probability of having adenomas could save patients up to $3.4 million and >239,000 millisieverts of radiation. CONCLUSION: Rather than imaging all patients with primary hyperparathyroidism, a selective strategy that considers the probability of having adenomas could reduce costs and avoid excess radiation exposure.

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).

Academic global surgical competencies: A modified Delphi consensus study.

Academic global surgery is a rapidly growing field that aims to improve access to safe surgical care worldwide. However, no universally accepted competencies exist to inform this developing field. A consensus-based approach, with input from a diverse group of experts, is needed to identify essential competencies that will lead to standardization in this field. A task force was set up using snowball sampling to recruit a broad group of content and context experts in global surgical and perioperative care. A draft set of competencies was revised through the modified Delphi process with two rounds of anonymous input. A threshold of 80% consensus was used to determine whether a competency or sub-competency learning objective was relevant to the skillset needed within academic global surgery and perioperative care. A diverse task force recruited experts from 22 countries to participate in both rounds of the Delphi process. Of the n = 59 respondents completing both rounds of iterative polling, 63% were from low- or middle-income countries. After two rounds of anonymous feedback, participants reached consensus on nine core competencies and 31 sub-competency objectives. The greatest consensus pertained to competency in ethics and professionalism in global surgery (100%) with emphasis on justice, equity, and decolonization across multiple competencies. This Delphi process, with input from experts worldwide, identified nine competencies which can be used to develop standardized academic global surgery and perioperative care curricula worldwide. Further work needs to be done to validate these competencies and establish assessments to ensure that they are taught effectively.

Bidirectional processes linking social determinants of health and pediatric sickle cell anemia management: A qualitative study.

BACKGROUND: Children with sickle cell anemia (SCA) have substantial medical needs and more unmet basic needs than children with other medical conditions. Despite a recent focus on social determinants of health (SDoH), there remains an incomplete understanding of the processes linking SDoH and disease management, particularly for youth with SCA. This study elucidated these processes and identified ways to mitigate deleterious effects of adverse SDoH on SCA management. METHODS: Parents/primary caregivers (N = 27) of children with SCA (≤12 years old) participated in semi-structured interviews regarding SCA management and SDoH and completed quantitative measures of basic needs. Qualitative data were systematically coded and analyzed using applied thematic analysis. Quantitative data were presented descriptively. RESULTS: Three qualitative themes were identified. First, SCA management is bidirectionally linked with the social environment, whereby challenges of SCA management can hinder basic needs from being met, and unmet basic needs and financial hardship hinder SCA management. Second, due to limited resources, parents/caregivers are faced with difficult choices between prioritizing basic needs versus SCA management. Third, addressing material, emotional, and informational needs may improve SCA management. Quantitatively, 73% of families endorsed ≥1 basic need, including food insecurity (42%), housing instability (62%), and/or energy insecurity 19% (vs. 20%). CONCLUSION: Despite documented associations, there remains a poor understanding of the processes linking SDoH and health. Findings underscore how day-to-day conditions undermine the management of SCA treatments, symptoms, and complications, limiting treatment effectiveness. Understanding these processes may inform family-centered, health equity interventions and policies to improve living conditions, disease management, and health outcomes.

Trajectories of Traumatic Stress Symptoms Among Siblings of Children With Cancer: The First Two Years Post-Diagnosis.

OBJECTIVE: Identify and describe trajectories of cancer-related posttraumatic stress symptoms (PTSS) among siblings of children with cancer within two years of diagnosis. METHOD: Siblings (aged 8-18; M = 11.2 years) across the United States, and for each, one caregiver, were recruited for a cohort sequential longitudinal study with three data collection points six months apart beginning at 6- or 12-months after cancer diagnosis. Siblings (N = 229; 42% of eligible/approached; 53% identifying as female; 68% identifying as non-Hispanic White) completed the Child Posttraumatic Stress Disorder Symptom Scale. Caregivers completed the Strengths and Difficulties Questionnaire (SDQ). Latent class growth analysis (LCGA) and growth mixture modeling (GMM) identified PTSS patterns across time. RESULTS: Fit statistics supported models with three to five PTSS trajectories. The three-class LCGA model included a large mild PTSS group (61%), a moderate PTSS group (35%), and a small (4%) stable severe PTSS group. The four-class LCGA and three- and four-class GMM included groups improving from moderate to mild PTSS (7-21%) and worsening to moderate PTSS across time (12-17%). Across models, siblings with mild PTSS had fewer caregiver-reported emotional and behavioral difficulties on the SDQ. CONCLUSIONS: A large group of siblings of children with cancer demonstrate resiliency, however, substantial subsets experience patterns of PTSS that include levels in the moderate-to-severe range during the first two years post-diagnosis. Future research should examine these patterns in more diverse/representative samples and identify factors associated with increasing and sustained severe PTSS to inform intervention targets and reduce cancer-related burden on families.

Validation of the Psychosocial Assessment Tool Sibling Module Follow-Up Version.

OBJECTIVE: Psychosocial screening is recommended to connect siblings of youth with cancer to psychosocial services, but the lack of validated sibling-specific screening tools is a barrier to routine screening. The current study aimed to validate and establish a clinical cutoff for the recently developed Psychosocial Assessment Tool (PAT) Sibling Module follow-up version to address this barrier. METHODS: Parents (N = 246) completed the PAT Sibling Module follow-up version for all siblings within their families ages 0-17 years (N = 458) at three time points between 6- and 24-month post-cancer diagnosis. For one target sibling within each family aged 8-17 years, parents also completed the Strengths and Difficulties Questionnaire, and the target sibling completed the Child PTSD Symptom Scale. Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity. Receiver operator characteristic analyses were used to establish a maximally sensitive and specific clinical cutoff. RESULTS: Internal consistency was acceptable for all age versions (Kuder-Richardson 20s ≥ 0.79), except for the ages 0-2 version, which had low internal consistency at 18 months post-diagnosis (Kuder-Richardson 20 = 0.57). Convergent (r values >0.7, p values <.001) and predictive (r values >0.6, p values <.001) validity were strong at each time point. An optimal clinical cutoff of 0.32 was identified (range: 0.00-1.00). CONCLUSIONS: The PAT Sibling Module follow-up version is a reliable and valid screener for sibling psychosocial risk following cancer diagnosis. Validation of a sibling-specific screener and establishment of a clinical cutoff are necessary first steps to addressing siblings' unmet psychosocial needs and improving trajectories of sibling functioning.

Academic Global Surgery: Creating Opportunities, Equity, and Diversity.

A workforce trained in the development and delivery of equitable surgical care is critical in reducing the global burden of surgical disease. Academic global surgery aims to address the present inequities through collaborative partnerships that foster research, education, advocacy and training to support and increase the surgical capacity in settings with limited resources. Barriers include a deficiency of resources, personnel, equipment, and funding, a lack of communication, and geographical challenges. Multi-level partnerships remain fundamental; these types of partnerships include a wide range of trainees, professionals, institutions, and nations, yet care must be taken to avoid falling into the trap of surgical "voluntourism" and undermining the expertise and practice of long-standing frontline providers. Academic global surgery has the benefit of developing a community of surgeons who possess the tools needed to collaborate on individual, institutional, and international levels to address inequities in surgery that are spread variously across the globe. However, challenges for surgeons pursuing a career in global surgery include balancing clinical responsibilities while integrating global surgery as a career during training. This is due in part to the lack of mentorship, research time, grant funding, support to attend conferences, and a limitation of resources, all of which are significantly more pronounced for surgeons from low-resource countries.

Bringing Together a Transdisciplinary Team to Create and Advance a Shared Vision for Research and Support for Siblings of Youth With Cancer.

Background: Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. Methods: SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. Results: SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. Discussion: Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.

Inconsistent, uncoordinated, and reactive: The current state of sibling psychosocial care.

BACKGROUND: Although providing sibling psychosocial services is a standard of care in pediatric oncology, initial survey research suggests that this standard is rarely achieved and siblings' support needs remain unmet. Which sibling psychosocial services are available and how centers provide such services is unknown. To identify targetable services gaps, this qualitative study characterizes current sibling psychosocial care practices at select pediatric cancer centers across the United States. PROCEDURE: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) working across the United States in pediatric oncology centers of varied sizes. Interviews queried providers regarding sibling-focused parent psychoeducation, psychosocial screening, comprehensive assessment, and psychosocial support offerings. Interview data were analyzed using Applied Thematic Analysis. RESULTS: Across cancer centers, sibling care practices did not align with consensus-based recommendations. The nature and availability of sibling-focused psychoeducation, screening, assessment, and support were variable between and within centers. Siblings themselves were largely absent from sibling psychosocial care, and care was rarely sibling-specific. The flow of information about siblings was discontinuous and uncoordinated across the care continuum, resulting in psychosocial care provided reactively, typically in response to parental concerns. CONCLUSIONS: Sibling psychosocial care provision falls short of established care recommendations, leaving sibling psychosocial needs unmet. Findings highlight the need for tools and strategies to facilitate the implementation of sibling psychosocial care across the care continuum, to support siblings' psychosocial functioning across the life course.

Initial validation of a new psychosocial screener for siblings of youth with cancer: The Psychosocial Assessment Tool Sibling Modules.

OBJECTIVE: Psychosocial screening can facilitate the identification of families who have difficulty adjusting to and managing serious pediatric illness. Despite siblings' roles within the family and increased psychosocial risk, a systematic approach to screening siblings of youth with cancer remains rare. One barrier to systematic sibling screening is the lack of a validated screener. We aimed to establish initial validity of the new parent-reported Psychosocial Assessment Tool (PAT) Sibling Modules for siblings ages 0-2, 3-4, 5-9, and 10+. METHODS: Families (N = 64) completed the PAT Sibling Modules and the Strengths and Difficulties Questionnaire (SDQ) regarding siblings' functioning at cancer diagnosis (13-23 items, depending on age version) and 6 months later (17-42 items). Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity of the PAT Sibling Modules. RESULTS: Baseline and follow-up versions of the modules have strong internal consistency (Kuder-Richardson 20 range: 0.82-0.93) and convergent validity at diagnosis (r-values ≥0.4, p-values <0.01) and follow-up (r-values >0.4, p-values <0.05). Predictive validity was supported by significant correlations between baseline PAT Sibling Module scores and 6 month SDQ scores (r = 0.86, p < 0.001). CONCLUSIONS: Findings provide initial evidence that the PAT Sibling Modules are valid measures of sibling psychosocial risk. Availability of a validated screener is a first step toward addressing siblings' unmet psychosocial needs.

Coaching for impact: successful implementation of a multi-national, multi-institutional synchronous research course in Ethiopia.

Purpose: Under the American College of Surgeons' Operation Giving Back, several US institutions collaborated with a teaching and regional referral hospital in Ethiopia to develop a surgical research curriculum. Methods: A virtual, interactive, introductory research course which utilized a web-based classroom platform and live educational sessions via an online teleconferencing application was implemented. Surgical and public health faculty from the US and Ethiopia taught webinars and led breakout coaching sessions to facilitate participants' project development. Both a pre-course needs assessment survey and a post-course participation survey were used to examine the impact of the course. Results: Twenty participants were invited to participate in the course. Despite the majority of participants having connection issues (88%), 11 participants completed the course with an 83% average attendance rate. Ten participants successfully developed structured research proposals based on their local clinical needs. Conclusion: This novel multi-institutional and multi-national research course design was successfully implemented and could serve as a template for greater development of research capacity building in the low- and middle-income country (LMIC) setting.

Psychosocial care providers' perspectives: Barriers to implementing services for siblings of children with cancer.

BACKGROUND: Siblings of children with cancer are at increased risk for poor long-term psychosocial outcomes. The standard of psychosocial care in pediatric oncology calling for sibling support is not routinely implemented, often leaving siblings with unmet psychosocial needs. Barriers to implementing the sibling standard may exist at multiple levels. This study addresses research gaps regarding multilevel barriers to supporting siblings at the health care system, oncology center, and family levels. PROCEDURE: Qualitative interviews were conducted with psychosocial care providers (N = 27; 18 psychologists, five social workers, three psychiatrists, and one child life specialist) employed at oncology centers within hospitals across the United States, varying in extent of sibling programming and center size. Interviews included questions about providers' roles, oncology center characteristics, existing psychosocial sibling services, barriers to providing systematic sibling assessment, and ideas about how to overcome barriers. Data were analyzed using applied thematic analysis. RESULTS: Qualitative analysis revealed (a) barriers to providing sibling services occur at multiple levels (health care system, oncology center, family); (b) barriers at multiple levels frequently interact with one another; and (c) interacting barriers maintain a cycle: barriers to providing services contribute to limited provision of services, low service provision leads to limited utilization of existing services and underprioritization of siblings, and together this leads to siblings being off the radar, which further limits sibling service provision. CONCLUSION: Addressing health care system and oncology center barriers to implementing sibling assessment and support may be important potential targets for interventions to help ensure that siblings receive needed psychosocial assessment and support.

Time Heals Most Wounds - Perceptions of Thyroidectomy Scars in Patients With Thyroid Cancer.

BACKGROUND: Patients understandably have concerns about thyroidectomy scars. This study aimed to characterize patients' perceptions of their thyroidectomy scar before and up to 1-y after surgery. METHODS: Patients with papillary thyroid cancer (n = 83) completed semi-structured interviews before and at 2-wks, 6-Wk, 6-mo, and 1-y post-thyroidectomy. Interviews probed about scar concerns and appearance. Content analysis was used to identify themes. RESULTS: The majority of participants did not express concerns about scar appearance. When expressed, preoperative concerns often stemmed from previous surgery experiences or unease with neck incisions. Postoperatively, concerns about scar appearance decreased over time throughout the healing period with most patients being satisfied with their scar appearance by 6-mo after surgery. CONCLUSIONS: Patients with papillary thyroid cancer express few concerns about scar thyroidectomy appearance. Surgeons can reassure patients who have preoperative concerns that most patients are satisfied with their scar appearance by 6-mo after surgery.

Implications of Universal Autism Screening: Perspectives From Culturally Diverse Families With False-Positive Screens.

OBJECTIVE: The American Academy of Pediatrics (AAP) recommends that pediatricians screen all young children for autism spectrum disorder (ASD). However, the US Preventive Services Task Force stated that there is insufficient evidence about the potential harms and benefits of universal ASD screening. To address this gap, we conducted qualitative interviews with caregivers of children who received a false-positive ASD screen to learn about families' perceptions of the harms and benefits of universal ASD screening. METHODS: Culturally diverse caregivers (N = 26) of children with false-positive ASD screens completed qualitative interviews focused on parents' experiences with and recommendations to improve the ASD screening and evaluation process. Interviews were transcribed verbatim, coded, and analyzed using applied thematic analysis. RESULTS: Parents explained that the ASD screening and evaluation process increased their knowledge about child development and substantiated existing concerns. The ASD screening and evaluation process resulted in connecting their child to services, which parents felt led to improvements in their child's delays. Parents endorsed anxiety during wait times for the formal developmental assessment. However, all parents expressed that, if given the option, they would repeat the screening and evaluation process again. Caregivers recommended universal screening for ASD and suggested that screening extend beyond the pediatrician to other settings. CONCLUSIONS: From parents' perspectives, the connection to developmental services and increased knowledge of child development that resulted from the false-positive ASD screen outweighed the time-limited emotional distress triggered by a positive ASD screen. Overall, parents' preferences for universal ASD screening align with the AAP's recommendations.

Academic Global Surgery Curricula: Current Status and a Call for a More Equitable Approach.

INTRODUCTION: We aimed to search the literature for global surgical curricula, assess if published resources align with existing competency frameworks in global health and surgical education, and determine if there is consensus around a fundamental set of competencies for the developing field of academic global surgery. METHODS: We reviewed SciVerse SCOPUS, PubMed, African Medicus Index, African Journals Online (AJOL), SciELO, Latin American and Caribbean Health Sciences Literature (LILACS) and Bioline for manuscripts on global surgery curricula and evaluated the results using existing competency frameworks in global health and surgical education from Consortium of the Universities for Global Health (CUGH) and Accreditation Council for Graduate Medical Education (ACGME) professional competencies. RESULTS: Our search generated 250 publications, of which 18 were eligible: (1) a total of 10 reported existing competency-based curricula that were concurrent with international experiences, (2) two reported existing pre-departure competency-based curricula, (3) six proposed theoretical competency-based curricula for future global surgery education. All, but one, were based in high-income countries (HICs) and focused on the needs of HIC trainees. None met all 17 competencies, none cited the CUGH competency on "Health Equity and Social Justice" and only one mentioned "Social and Environmental Determinants of Health." Only 22% (n = 4) were available as open-access. CONCLUSION: Currently, there is no universally accepted set of competencies on the fundamentals of academic global surgery. Existing literature are predominantly by and for HIC institutions and trainees. Current frameworks are inadequate for this emerging academic field. The field needs competencies with explicit input from LMIC experts to ensure creation of educational resources that are accessible and relevant to trainees from around the world.

Informed Consent and Informed Decision-Making in High-Risk Surgery: A Quantitative Analysis.

BACKGROUND: Informed consent is an ethical and legal requirement that differs from informed decision-making-a collaborative process that fosters participation and provides information to help patients reach treatment decisions. The objective of this study was to measure informed consent and informed decision-making before major surgery. STUDY DESIGN: We audio-recorded 90 preoperative patient-surgeon conversations before major cardiothoracic, vascular, oncologic, and neurosurgical procedures at 3 centers in the US and Canada. Transcripts were scored for 11 elements of informed consent based on the American College of Surgeons' definition and 9 elements of informed decision-making using Braddock's validated scale. Uni- and bivariate analyses tested associations between decision outcomes as well as patient, consultation, and surgeon characteristics. RESULTS: Overall, surgeons discussed more elements of informed consent than informed decision-making. They most frequently described the nature of the illness, the operation, and potential complications, but were less likely to assess patient understanding. When a final treatment decision was deferred, surgeons were more likely to discuss elements of informed decision-making focusing on uncertainty (50% vs 15%, p = 0.006) and treatment alternatives (63% vs 27%, p = 0.02). Conversely, when surgery was scheduled, surgeons completed more elements of informed consent. These results were not associated with the presence of family, history of previous surgery, location, or surgeon specialty. CONCLUSIONS: Surgeons routinely discuss components of informed consent with patients before high-risk surgery. However, surgeons often fail to review elements unique to informed decision-making, such as the patients' role in the decision, their daily life, uncertainty, understanding, or patient preference.