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"Graetz, Dylan E."
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Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study
by
Mack, Jennifer W
,
Cáceres-Serrano, Ana
,
Devidas, Meenakshi
in
Cancer therapies
,
Children & youth
,
Culture
2022
ObjectivesTo examine treatment decision-making priorities and experiences among parents of children with cancer in Guatemala.SettingThis study was conducted at Guatemala’s National Pediatric Cancer Center in Guatemala City.ParticipantsSpanish-speaking parents of paediatric patients (≤18 years of age) diagnosed with any form of cancer within the 8 weeks prior to study enrolment. The quantitative portion of this study included 100 parent participants; the qualitative component included 20 parents. Most participants were Catholic or Evangelical Spanish-speaking mothers.OutcomesPriorities and experiences of cancer treatment decision-making including decision-making role and experienced regret.ResultsA range of paediatric ages and cancer diagnoses were included. Most Guatemalan parents surveyed (70%) made decisions about their child’s cancer together and almost all (94%) without input from their community. Surveyed parents predominately preferred shared decision-making with their child’s oncologist (76%), however 69% agreed it was best not to be provided with many options. Two-thirds of surveyed parents (65%) held their preferred role in decision-making, with fathers more likely to hold their preferred role than mothers (p=0.02). A small number of parents (11%) experienced heightened decisional regret, which did not correlate with socio-demographic characteristics or preferred decision-making role. Qualitative results supported quantitative findings, demonstrating a decision-making process that emphasised trust and honesty.ConclusionsGuatemalan parents preferred to make decisions with their medical team and appreciated providers who were honest and inclusive, but directive about decisions. This study reinforces the importance of the provider–parent relationship and encourages clinicians in all settings to ask about and honour each parent’s desired role in decision-making.
Journal Article
Stages of change: Strategies to promote use of a Pediatric Early Warning System in resource‐limited pediatric oncology centers
by
Peñafiel, Eulalia
,
Kortz, Teresa
,
Montalvo, Erika
in
Behavior
,
behavioral science
,
Bilingualism
2023
Background Pediatric Early Warning Systems (PEWS) assist early detection of clinical deterioration in hospitalized children with cancer. Relevant to successful PEWS implementation, the “stages of change” model characterizes stakeholder support for PEWS based on willingness and effort to adopt the new practice. Methods At five resource‐limited pediatric oncology centers in Latin America, semi‐structured interviews were conducted with 71 hospital staff involved in PEWS implementation. Purposive sampling was used to select centers requiring variable time to complete PEWS implementation, with low‐barrier centers (3–4 months) and high‐barrier centers (10–11 months). Interviews were conducted in Spanish, professionally transcribed, and translated into English. Thematic content analysis explored “stage of change” with constant comparative analysis across stakeholder types and study sites. Results Participants identified six interventions (training, incentives, participation, evidence, persuasion, and modeling) and two policies (environmental planning and mandates) as effective strategies used by implementation leaders to promote stakeholder progression through stages of change. Key approaches involved presentation of evidence demonstrating PEWS effectiveness, persuasion and incentives addressing specific stakeholder interests, enthusiastic individuals serving as models for others, and policies enforced by hospital directors facilitating habitual PEWS use. Effective engagement targeted hospital directors during early implementation phases to provide programmatic legitimacy for clinical staff. Conclusion This study identifies strategies to promote adoption and maintained use of PEWS, highlighting the importance of tailoring implementation strategies to the motivations of each stakeholder type. These findings can guide efforts to implement PEWS and other evidence‐based practices that improve childhood cancer outcomes in resource‐limited hospitals. This multicenter, multinational qualitative study identifies strategies used by implementation leaders to promote hospital staff's decision to adopt a Pediatric Early Warning System (PEWS) in resource‐limited pediatric oncology centers. These findings can guide efforts to implement PEWS and other quality improvement tools that improve childhood cancer outcomes globally.
Journal Article
Pediatric Early Warning Systems (PEWS) improve provider‐family communication from the provider perspective in pediatric cancer patients experiencing clinical deterioration
by
Baker, Justin N.
,
Kaye, Erica C.
,
Mendez Aceituno, Alejandra
in
cancer management
,
Child
,
Children & youth
2023
Background Communication between providers and patients' families is an integral part of clinical care. Family concern is a validated component of Pediatric Early Warning Systems (PEWS); however, little is known about the impact of PEWS on provider‐family communication. Methods Semi‐structured interviews were conducted with 83 ward and Pediatric Intensive Care Unit (PICU) providers involved in the care of patients with deterioration at two pediatric oncology hospitals of different resource levels: St. Jude Children's Research Hospital (n = 42) in the United States and Unidad Nacional de Oncología Pediátrica (UNOP, n = 41) in Guatemala. Interviews were conducted in the participants' native language (English or Spanish), transcribed, and translated into English. Transcripts were coded by two researchers and analyzed for thematic content surrounding family communication and concern. Results All participants recognized patients' families as a valuable part of the care team, particularly during events requiring escalation of care. Perceived barriers to communication included limited time spent at the bedside, and, at UNOP, language and literacy challenges which occasionally limited providers' ability to assess family concern and involve families in patient care. Despite these barriers, providers perceived PEWS improved communication by facilitating more interaction with families, allowing for relationship‐building, anticipatory guidance, and destigmatization of the PICU. PEWS assessments also allowed families to contribute to identification of deterioration. Conclusions PEWS improve the quality of communication between providers and families by providing more opportunities for interaction, building relationships, and trust. These findings further support the use of PEWS in the care of children with cancer in hospitals of all resource‐levels. In this qualitative analysis of provider interviews, we identify PEWS as facilitators of communication between providers and patient families in resource‐limited and high‐resource pediatric oncology hospitals. Our findings demonstrate that providers perceive the family concern component of PEWS allows greater inclusion of patient families as a part of the healthcare team.
Journal Article
Strategies to improve healthcare team communication structure and quality in resource-variable childhood cancer hospitals (TeamTalk): a study protocol
by
Carothers, Bobbi J.
,
Agulnik, Asya
,
Hayes, Samantha
in
Cancer therapies
,
Childhood
,
Clinical deterioration
2025
Background
Healthcare team communication is essential to high-quality childhood cancer care, especially during high-acuity events such as clinical deterioration and in resource-variable settings, where supportive interventions to resolve deterioration are less available. Communication quality has traditionally been understudied in these settings, and there is a notable lack of communication interventions that are appropriate and feasible in settings across resource levels. We propose addressing this challenge in this study protocol, which will co-develop and pilot a multi-level intervention to improve communication and outcomes for children receiving cancer treatment.
Methods/design
This study leverages systems and implementation science methodologies to evaluate and improve communication quality in the care of hospitalized children with cancer. We will use a newly developed reliable and multilingual measure of communication quality during clinical deterioration (CritCom). In this study, we will: 1) evaluate the relationship between healthcare team communication structures (using social network analysis) and quality (using CritCom) in the care of children with cancer, with a specific focus on the impact of hierarchy and modifiable communication determinants. We will then: 2) co-develop a multilevel intervention to address challenges in communication quality across variably resourced settings, using semi-structured interviews among clinicians working in these settings and intervention mapping with a global expert panel. Finally, we will 3) test the feasibility, acceptability, appropriateness, and preliminary efficacy of this novel intervention using a cluster-randomized wait list control pilot trial in eight resource-variable hospitals providing childhood cancer care with poor team communication quality.
Discussion
This project identifies modifiable determinants of communication before co-developing and testing interventions with clinicians. When completed, this study will produce an evidence-informed, multilevel intervention to improve healthcare team communication during clinical deterioration, advancing the science of team communication during cancer care, and ultimately improving survival for children with cancer.
Trial registration
ClinicalTrials.gov Record NCT07083674.
Journal Article
Understanding hope at diagnosis: A study among Guatemalan parents of children with cancer
by
Mack, Jennifer W.
,
Antillon‐Klussmann, Federico
,
Rivas, Silvia
in
Bilingualism
,
Cancer
,
Caregivers
2023
Background In high‐income countries, hope facilitates parental coping and builds the clinical relationship between families of children with cancer and their clinicians. However, the manifestation of hope in low‐ and middle‐income countries (LMICs) remains poorly understood. Our study explores Guatemalan parents' experiences with hope during the pediatric oncology diagnostic process and aims to identify discrete actions clinicians take to support hope. Methods This qualitative study utilized audio‐recordings of the diagnostic process and an additional semi‐structured interview for 20 families of children with cancer at Unidad Nacional de Oncología Pediátrica in Guatemala. Spanish audio‐recordings were translated into English, transcribed, and coded using a priori and novel codes. Thematic content analysis using constant comparative methods explored parents' hopes and concerns. Results At diagnosis, Guatemalan parents expressed both hopes and concerns related to the entire cancer continuum. Throughout the diagnostic process, hope grew as concerns were alleviated. Clinicians supported hope by creating a supportive environment, providing information, affirming religious beliefs, and empowering parents. These strategies helped parents shift their focus from fear and uncertainty toward hope for their child's future. Parents expressed that establishing hope improved mood, promoted acceptance, and enabled them to care for themselves and their children. Conclusion These results confirm the relevance of supporting hope in pediatric oncology settings in LMICs and suggest that culture informs hope‐related needs. Supporting hope is critical across cultures and can be integrated into clinical conversation using the four processes identified by our results. This study describes four actions clinicians can use to support hope across culture and resource setting, which ultimately improve parental outcomes and facilitate clinical relationships.
Journal Article
Wilms Tumor with Vena Caval Intravascular Extension: A Surgical Perspective
by
Murphy, Andrew J.
,
Davidoff, Andrew M.
,
Gehle, Daniel B.
in
Abdomen
,
Accuracy
,
Adjuvant treatment
2024
Wilms tumor (WT) is the most common kidney tumor in pediatric patients. Intravascular extension of WT above the level of the renal veins is a rare manifestation that complicates surgical management. Patients with intravascular extension are frequently asymptomatic at diagnosis, and tumor thrombus extension is usually diagnosed by imaging. Neoadjuvant chemotherapy is indicated for thrombus extension above the level of the hepatic veins and often leads to thrombus regression, obviating the need for cardiopulmonary bypass in cases of cardiac thrombus at diagnosis. In cases of tumor extension to the retrohepatic cava, neoadjuvant therapy is not strictly indicated, but it may facilitate the regression of tumor thrombi, making resection safer. Hepatic vascular isolation and cardiopulmonary bypass increase the risk of bleeding and other complications when utilized for tumor thrombectomy. Fortunately, WT patients with vena caval with or with intracardiac extension have similar overall and event-free survival when compared to patients with WT without intravascular extension when thrombectomy is successfully performed. Still, patients with metastatic disease at presentation or unfavorable histology suffer relatively poor outcomes. Dedicated pediatric surgical oncology and pediatric cardiothoracic surgery teams, in conjunction with multimodal therapy directed by a multidisciplinary team, are preferred for optimized outcomes in this patient population.
Journal Article
The COVID‐19 Pandemic's impact on sustainability and expansion of a Pediatric Early Warning System in resource‐limited hospitals
by
Montalvo, Erika
,
Muniz‐Talavera, Hilmarie
,
Graetz, Dylan E.
in
Bilingualism
,
Cancer therapies
,
Child
2023
Background The COVID‐19 pandemic impacted healthcare delivery worldwide, including pediatric cancer care, with a disproportionate effect in resource‐limited settings. This study evaluates its impact on existing quality improvement (QI) programs. Methods We conducted 71 semi‐structured interviews of key stakeholders at five resource‐limited pediatric oncology centers participating in a collaborative to implement Pediatric Early Warning System (PEWS). Interviews were conducted virtually using a structured interview guide, recorded, transcribed, and translated into English. Two coders developed a codebook of a priori and inductive codes and independently coded all transcripts, achieving a kappa of 0.8–0.9. Thematic analysis explored the impact of the pandemic on PEWS. Results All hospitals reported limitations in material resources, reduction in staffing, and impacts on patient care due to the pandemic. However, the impact on PEWS varied across centers. Identified factors that promoted or limited ongoing PEWS use included the availability of material resources needed for PEWS, staff turnover, PEWS training for staff, and the willingness of staff and hospital leaders to prioritize PEWS. Consequently, some hospitals were able to sustain PEWS; others halted or reduced PEWS use to prioritize other work. Similarly, the pandemic delayed plans at all hospitals to expand PEWS to other units. Several participants were hopeful for future expansion of PEWS post‐pandemic. Conclusion The COVID‐19 pandemic created challenges for sustainability and scale of PEWS, an ongoing QI program, in these resource‐limited pediatric oncology centers. Several factors mitigated these challenges and promoted ongoing PEWS use. These results can guide strategies to sustain effective QI interventions during future health crises. The COVID‐19 pandemic created challenges to maintain and scale‐up an ongoing quality improvement initiative, a Pediatric Early Warning System (PEWS), in five pediatric oncology hospitals in Latin America. Identified factors mitigate these challenges and promote ongoing PEWS use can be leveraged to support sustainability of programs to reduce global disparities in childhood cancer during future health crises.
Journal Article
Communication transforms the impact of the COVID‐19 pandemic on children with cancer and their families
by
Li, Dongfang
,
Rusmawatiningtyas, Desy
,
Kaye, Erica C.
in
Bilingualism
,
Cancer
,
Cancer therapies
2023
Background The COVID‐19 pandemic altered healthcare systems globally, causing delays in care delivery and increased anxiety among patients and families. This study examined how hospital stakeholders and clinicians perceived the global impact of the COVID‐19 pandemic on children with cancer and their families. Methods This secondary analysis examined data from a qualitative study consisting of 19 focus groups conducted in 8 languages throughout 16 countries. A codebook was developed with novel codes derived inductively from transcript review. In‐depth analysis focused on the impact of the COVID‐19 pandemic on children with cancer and their families. Results Eight themes describing the impact of the pandemic on patients and their families were identified and classified into three domains: contributing factors (COVID‐19 Policies, Cancer Treatment Modifications, COVID‐19 Symptoms, Beliefs), patient‐related impacts (Quality of Care, Psychosocial impacts, Treatment Reluctance), and the central transformer (Communication). Participants described the ability of communication to transform the effect of contributing factors on patient‐related impacts. The valence of impacts depended on the quality and quantity of communication among clinicians and between clinicians and patients and families. Conclusions Communication served as the central factor impacting whether the COVID‐19 pandemic positively or negatively affected children with cancer and families. These findings emphasize the key role communication plays in delivering patient‐centered care and can guide future development of communication‐centered interventions globally. This multinational, qualitative secondary analysis demonstrates how communication transformed the effects of the COVID‐19 pandemic on patients and families. The findings of this study emphasize the importance of developing communication centered interventions as a means of mitigating impacts on patient care.
Journal Article
Utilizing Multilingual Methods and Rapid Analysis for Global Qualitative Research During a Pandemic
by
Zhang, Hui
,
Wang, Jade X
,
Li, Dongfang
in
Coping
,
COVID-19
,
Ethics, Theoretical Development, or Methodological Development
2022
Historically, qualitative research has complemented quantitative biologic and epidemiologic studies to provide a more complete understanding of pandemics. The COVID-19 pandemic has generated unique and novel challenges for qualitative researchers, who have embraced creative solutions including virtual focus groups and rapid analyses to continue their work. We present our experience conducting a multilingual global qualitative study of healthcare resilience among teams of pediatric oncology professionals during the COVID-19 pandemic. We provide an in-depth description of our methodology and an analysis of factors we believe contributed to our study’s success including our use of technology, engagement of a large multilingual team, global partnerships, and framework-based rapid analysis. We hope these techniques may be useful to qualitative researchers conducting studies during the current pandemic, as well as for all pediatric oncology studies including multiple languages or geographically disparate subjects.
Journal Article
Harnessing a clinician-led governance model to overcome healthcare tribalism and drive innovation: a case study of Northumbria NHS Foundation Trust
by
Dowdeswell, Barrie
,
Bhakta, Nickhill
,
Graetz, Dylan E.
in
Business units
,
Case studies
,
Clinical governance
2022
PurposeHealthcare tribalism refers to the phenomenon through which different groups in a healthcare setting strictly adhere to their profession-based silo, within which they exhibit stereotypical behaviours. In turn, this can lead to deleterious downstream effects upon productivity and care delivered to patients. This study highlights a clinician-led governance model, implemented at a National Health Service (NHS) trust, to investigate whether it successfully overcame tribalism and helped drive innovation.Design/methodology/approachThis was a convergent mixed-methods study including qualitative and quantitative data collected in parallel. Qualitative data included 27 semi-structured interviews with representatives from four professional groups. Quantitative data were collected through a verbally administered survey and scored on a 10-point scale.FindingsThe trust arranged its services under five autonomous business units, with a clinician and a manager sharing the leadership role at each unit. According to interviewees replies, this equivalent authority was cascaded down and enabled breaking down professional siloes, which in turn aided in the adoption of an innovative clinical model restructure.Practical implicationsThis study contributes to the literature by characterizing a real-world example in which healthcare tribalism was mitigated while reflecting on the advantages yielded as a result.Originality/valuePrevious studies from all over the world identified major differences in the perspectives of different healthcare professional groups. In the United Kingdom, clinicians largely felt cut off from decision-making and dissatisfied with their managerial role. The study findings explain a governance model that allowed harmony and inclusion of different professions. Given the long-standing strains on healthcare systems worldwide, stakeholders can leverage the study findings for guidance in developing and implementing innovative managerial approaches.
Journal Article