Quality of life after pelvic exenteration for gynecologic cancer: Findings from a qualitative study.

OBJECTIVE: Pelvic exenteration (PE) in carefully selected gynecologic cancer patients has a 5-year survival rate as high as 60%. Thus, there is a growing number of PE survivors dealing with the effects of this radical surgery. The current study sought to explore women's physical, psychological, and social quality of life (QOL) after PE. METHODS: Fourteen women who had undergone PE for recurrent gynecologic cancer at least 1 year previously completed semistructured qualitative interviews designed to elicit expectations and experiences of QOL following PE. Thematic analysis was used to code transcripts for both a priori and emergent themes. RESULTS: Themes included PE versus palliative care, preparedness, persistent symptoms, the not so normal new normal, new rules of social engagement, support, emotional diversity, and bouncing back through adaptive coping. Key differences with previous studies include the explicit acknowledgement of the need for palliative care, the chronic nature of multiple, seemingly unaddressed physical symptoms in survivorship, and the predominance of positive psychological symptoms. While a minority expressed emotional distress and regret for undergoing PE, most articulated a sense of resilience gained through a variety of adaptive coping strategies. CONCLUSIONS: Findings underscore the persistent physical, psychological, and social effects of PE on QOL and the need for comprehensive, multidisciplinary patient care before and long after surgery. Findings should promote development of a best practice clinical pathway for the care and education of women who undergo PE with curative intent for gynecologic cancer.

Challenges and adaptations for a cluster-randomized control trial targeting parents of pediatric cancer survivors with obesity during the COVID-19 pandemic.

Although the COVID-19 pandemic has increased the importance of digital technology in clinical trial implementation, there is a dearth of literature reporting on challenges and strategies related to multi-site randomized controlled trials (RCTs) among pediatric cancer survivors during the pandemic. This paper discusses challenges faced in the implementation of the NOURISH-T+ trial so far (December 2019-March 2022) and describes adaptations made as a result of these disruptions in the areas of recruitment, data collection, and overall engagement. This reflection is based on a multisite cluster-RCT that aims to examine whether an intervention targeting parents as agents of change to promote healthy eating and physical activity in pediatric cancer survivors, NOURISH-T+ (Nourishing Our Understanding of Role modeling to Improve Support and Health for Healthy Transitions), reduces body mass and improves health behaviors compared to Brief NOURISH-T (Enhanced Usual Care/EUC). The COVID-19 pandemic has created and exacerbated challenges for our trial related to participant recruitment and engagement, technology access and literacy, and data collection and management, as well as COVID-related challenges (e.g., Zoom fatigue). Strategies used to address these challenges might prove helpful in future virtual or hybrid RCTs, including developing trust and rapport with participants, providing support through multiple routes of dissemination, and using data management applications (e.g., REDCap™) for automation and project management. Extra efforts to build families' trust and rapport, offering multiple routes of support, and automating as many tasks as possible are critical to ensuring the continuation of high-quality clinical trials during the COVID-19 pandemic.

Challenges and strategies among research on pediatric cancer survivors during the COVID-19 pandemic have not been well described. Our intervention, NOURISH-T+ (Nourishing Our Understanding of Role modeling to Improve Support and Health for Healthy Transitions), aims to promote healthy eating and physical activity in pediatric cancer survivors. The COVID-19 pandemic has created challenges for our trial related to participant recruitment and engagement, technology, data collection, and management, and COVID-related challenges (e.g., Zoom fatigue). Strategies that have been helpful for us include developing trust and rapport with participants, providing support through multiple routes of dissemination (e.g., website, videos), and using data management applications (e.g., REDCap™) to optimize tasks.

Engaging the Community to Effectively Plan and Implement Community-Based Mental Health Programs.

Community engagement is recognized as an effective means to maximizing public health program impacts despite challenges such as power imbalances that can undermine efforts. The value of engaging communities as equitable partners in the design and delivery of community-based programs has gained increasing traction over the last few decades. Most research in this area has been focused on partnerships between academia and communities, leaving a knowledge gap regarding engagement between community organizations and between community organizations and members. This paper presents a process evaluation that aimed to identify and describe factors found to impact and promote community engagement efforts within a multisite, multiyear, community-based prevention initiative. Findings highlight that strategies such as investing in trust-building efforts, engaging community influencers, and providing meaningful opportunities for community member involvement can help facilitate effective implementation. Recognizing the value and necessity of community engagement in community-based programming is an integral and continuous process.

Exploration of Multilevel Barriers and Strategies That Affected Early COVID-19 Vaccination and Testing in Rural Latino Communities in Southwest Florida.

The COVID-19 pandemic has disproportionately impacted multiple racial and ethnic minority groups, including Latinos residing in rural communities. Low rates of vaccination and testing combined with social determinants of health have contributed significantly to this disparate impact. Given the needs and constraints unique to rural Latino migrant and immigrant communities, this qualitative study examined multilevel barriers and strategies that affect COVID-19 vaccination and testing uptake among these communities in southwest Florida. Four focus groups (n = 25) were conducted between March and April 2021 with various key stakeholders, including rural Latino community members, local leaders, and community health workers ('Promotoras de Salud'). Themes that aligned with barriers to COVID-19 vaccination and testing included fear, lack of control, misinformation, lack of accessibility, and institutional/policy issues; themes that aligned with strategies to improve COVID-19 vaccination and testing uptake included faith, taking care of self, and community and family resilience. Recommendations for improving future pandemic responses for rural Latino communities include incorporating multiple levels of intervention, such as consideration of the role of the family, involving trusted community members, and ensuring the development and implementation of fair and consistent policies.

Evaluating an Implementation Science Training Program: Impact on Professional Research and Practice.

Real-world application and implementation of evidence-based practice continue to be a challenge across multiple sectors, including behavioral health settings. Providing the opportunity for future researchers and practitioners to gain capacity and knowledge through structured experiential learning in implementation science is critical to closing the research to practice gap. The Institute for Translational Research Education in Adolescent Drug Abuse (ITRE) is a graduate certificate program that offers specific coursework, a large-scale service-learning project based in the community, and mentorship related to implementation science research and practice. The purpose of this evaluation was to examine, from the perspective of ITRE scholars, the perceived impact on the development of professional research and practice skills once graduated from the ITRE program. Fifty-eight semi-structured interviews across five cohorts were selected randomly for in-depth thematic analysis (n = 58). Results suggest that the ITRE provides a unique approach grounded in implementation science for building robust and transferable skills for future researchers and practitioners working in a variety of behavioral healthcare settings.

A cluster-randomized control trial targeting parents of pediatric cancer survivors with obesity: Rationale and study protocol of NOURISH-T.

Approximately 40-50% of pediatric cancer survivors (PCS) are overweight or obese; increasing their risk for metabolic syndrome and other negative long-term physical health complications. Using our successful pilot trial testing the preliminary feasibility and efficacy of NOURISH for Healthy Transitions (NOURISH-T), we refined our intervention, now NOURISH-T+, and will implement these refinements in this larger, multi-site randomized control trial. Parents of PCS with overweight/obesity (BMI ≥ 85th%ile), age 5-12, ≥6 months off treatment are randomly assigned to the NOURISH-T+ intervention or Enhanced Usual Care (EUC) comparison. Parents in NOURISH-T+ will participate in a 6-session, manualized intervention, with an additional dietician session and 2 PCS sessions, as well as post-intervention booster sessions. EUC consists of a one-time informational session, nationally available brochures and follow-up check-ins. Both study conditions will be conducted remotely via a videoconferencing platform. Parents and PCS will be assessed on anthropometric measures, physical activity (PA) and dietary behaviors at baseline, 3-, 6-, and 12-months post-intervention. We will enroll a diverse group of 260 parents/PCS dyads from four pediatric oncology clinics with the aim of evaluating the efficacy of our intervention across diverse pediatric oncology clinics. Our main aim is to compare the impact of NOURISH-T+ with EUC on PCS BMI z-score. Secondary aims are to compare intervention impact on PCS PA and eating behaviors and parent BMI and behaviors as well as to explore potential moderators of the intervention. Our longer-term goal is to establish a framework for future translation and dissemination of NOURISH-T+.