"The place it puts us in emotionally and relationally with our child, it's damaging": understanding the real-world psychosocial needs of caregivers of childhood cancer survivors.

PURPOSE: Understanding the lived experiences of childhood cancer caregivers can guide the development of effective psychosocial models of care. We conducted this qualitative study to understand triggers that impact the mental health, quality of life, and mental health supportive care needs of caregivers. METHODS: A maximum variation sampling strategy was used to recruit study participants for semi-structured interviews. Using a grounded theory approach, transcripts were independently dual-coded using inductive thematic analysis. We conducted a secondary thematic analysis emphasizing the impact of pediatric oncology on caregiver mental health. RESULTS: Our findings highlight caregiver experiences connected to their child's appearance, quality of life, or change in behavior. Caregivers reported the need to transition between the role of nurturer and protector and simultaneously be part of the care team, which increased trauma for caregivers and their children. Caregivers noted that the hardest part of being a caregiver is witnessing, participating, and forcing the child to comply with cancer treatment. Caregivers were left wishing there had been more support for these situations. CONCLUSION: Our findings reveal real-world experiences that caregivers view as among the most stressful during their child's cancer journey. These events provide insight into the nuanced and most difficult experiences from the caregiver perspective in which emotional support services would be most useful. These insights will inform a future model for mental healthcare. IMPLICATIONS FOR CANCER SURVIVORS: Caregivers' treatment-related stress is associated with the quality of life of pediatric cancer patients. Supporting the mental health, quality of life, and mental health supportive care needs of childhood cancer caregivers through supportive care guidelines may positively impact the caregiver-child relationship long into survivorship.  Children's and their caregivers' treatment-related stress are indelibly connected to the quality of life concerns throughout the cancer journey. Supporting the mental health, quality of life, and mental health supportive care needs of childhood cancer caregivers through supportive care guidelines will positively impact the caregiver-child relationship long into survivorship.

Family perspectives on the transition from active treatment to survivorship for children with cancer.

BACKGROUND: Completing therapy for childhood cancer is an exciting milestone. However, this adjustment can be extremely stressful for patients and their families as they transition from cancer patient to survivor. A better understanding of the patient and family experience and their needs during this transition is crucial for developing guidelines and leveraging support for future patients and families. PROCEDURE: Participants were recruited from across the United States using a maximum variation sampling strategy. Families were eligible if they had a child diagnosed with cancer before age 15 and had completed treatment at least 1 year prior to their interview. Participants completed a 90-180-minute semi-structured interview either in person or virtually. Interviews focused on the experiences of getting a diagnosis, experiences with treatment, information seeking, impact of cancer on the family, social support, and transitions to survivorship. Inductive thematic analysis revealed a wide variety of themes. This paper examines the transition from active cancer therapy into survivorship. RESULTS: Identified primary themes included (i) feelings about transitioning off therapy; (ii) coping with lingering effects; and (iii) experiences of transitioning off therapy and survivorship care. Subthemes highlighted the need for more support for both patients and families during this transition. CONCLUSION: Patients and families desire more support during the transition off therapy. Suggestions included access to additional resources, earlier transition to receiving survivorship care, and more holistic survivorship care. Further research is needed to determine best models and feasibility of delivering this desired support to all patients and families.

'Never once was I thinking the c-word': Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis.

AIMS AND OBJECTIVES: To describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America. BACKGROUND: It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events. DESIGN: An inductive qualitative inquiry. METHODS: In-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed. RESULTS: Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment. CONCLUSION: Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis. RELEVANCE TO CLINICAL PRACTICE: Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision-making. Clinician educational modules that include family perspectives may improve patient/parent-provider relationships. PARTICIPANT CONTRIBUTION: Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript.

Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research.

Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The "Database of Individual Patient Experiences" (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experiences. We conducted a formative evaluation with 14 pediatric oncology researchers to assess the value of using data from a DIPEx study on patient and caregiver experiences with childhood cancer to inform patient-centered research in pediatric oncology. Participants identified barriers to incorporating patient perspectives and experiences into their research and how the DIPEx approach could be leveraged to facilitate this practice.

Integration of patient and clinician narratives into systematic reviews: An applied proof of concept.

Health systems currently underutilize systematic reviews. Here, we describe a proof of concept project designed to augment the standard systematic review process by presenting qualitative information as a companion to a review on deprescribing interventions. We conducted a thematic analysis of semi-structured interviews with Veterans Health Administration clinicians and Veterans to describe first-hand experiences of engaging in the deprescribing process. Qualitative findings were incorporated into an interactive, web-based product designed to supplement the systematic review report. Preliminary evaluation suggests that integration of narratives as a companion to systematic reviews is of interest to frontline clinicians, researchers, and health system administrators.

A qualitative study of VHA clinicians' knowledge and perspectives on cannabis for medical purposes.

BACKGROUND: The legalization of cannabis is expanding across the USA, and its use has increased significantly, including among Veterans. Although the Veterans Health Administration (VHA) abides by the classification of cannabis as a Schedule I substance, it recently recommended that clinicians discuss cannabis with their patients. Little is known about VHA clinicians' perspectives on and knowledge of cannabis. OBJECTIVE: We sought to better understand clinicians' attitudes, beliefs, knowledge and communication with patients regarding cannabis. METHODS: We conducted semi-structured phone interviews with 14 VHA clinicians. Interviews were audio-recorded, transcribed verbatim and analysed using qualitative thematic analysis. RESULTS: VA clinicians described ambivalence towards cannabis for therapeutic purposes and identified several factors that inhibit conversations about cannabis use with their patients including discomfort with the lack of product standardization; lack of research examining the effectiveness and risks of cannabis use; unfamiliarity with pharmacology, formulations, and dosing of cannabis; and uncertainty regarding VHA policy. Clinicians had differing views on cannabis in the context of the opioid crisis. CONCLUSIONS: VA clinicians face challenges in navigating the topic of medical cannabis. Educational materials about cannabis products, dose and harms would be helpful to clinicians.

Our research study examines Veterans Health Administration clinicians' attitudes, beliefs, knowledge and communication with patients about cannabis (marijuana) use. We conducted phone interviews with 14 VHA clinicians in order to describe their experiences of talking to their patients about cannabis. Interviews were audio-recorded, transcribed and analysed to identify themes. We describe both common and unique experiences. Our findings suggest that VA clinicians have feelings of uncertainty towards cannabis use for medical purposes and described several reasons that prevent conversations about cannabis use with their patients, including discomfort with the lack of product regulation; lack of research examining the effect cannabis has on the body; unfamiliarity with the different cannabis products that are available; and uncertainty about VHA policy. VA clinicians have diverse views of cannabis in relation to the opioid epidemic.

"It Would've Been Nice if They Interpreted the Data a Little Bit. It Didn't Really Say Much, and It Didn't Really Help Us.": A Qualitative Study of VA Health System Evidence Needs.

BACKGROUND: Patient health outcomes improve when learning health care systems use evidence to implement promising services and allocate resources effectively. Here, we examine the unique environment in which Veterans Health Administration (VHA) leadership use evidence and the facilitators and barriers to using evidence synthesis products in decision-making. We end by describing the steps researchers can take to better support the needs of health system leadership. METHODS: We conducted 20 semistructured phone interviews with individuals in VHA leadership positions. We used an inductive approach to identify themes observed across key informant interviews. RESULTS: Key informants identified several factors that fostered the use of evidence including, timeliness, lack of bias, flexible approaches, and concise reports with a clear bottom line. Barriers included lack of relevant evidence and lack of information on how to translate evidence into practice, resistance to change among providers and within the larger health system, and political pressures to implement therapies or technologies with little evidence or uncertainty. Researchers can foster evidence uptake by developing a review scope and key questions that are important to multiple stakeholders, including frontline clinicians and health system leadership. CONCLUSIONS: The VHA's evidence needs resemble other health systems, but evidence synthesis products should include a translational component to enhance implementation. Resistance to change and political pressures can further hinder the uptake of evidence within VHA.

"Implementation Is so Difficult": Survey of National Learning Health System Decision-makers Identifies Need For Implementation Information in Evidence Reviews.

BACKGROUND: Evidence use within learning health care systems can improve patient health outcomes. Embedded in the Veterans Health Administration (VHA) since 2007, the Veterans Affairs Evidence Synthesis Program (ESP) provides tailored evidence synthesis services to support VHA's learning health care system goals. As part of the ESP's ongoing quality improvement efforts, we have been surveying our users since 2016. METHODS: We reviewed data from a survey of end-users received between September 5, 2016, and June 10, 2019. The survey assessed: (1) nature of decision-making needs; (2) actions resulting from the report's findings; (3) implementation timeframe; and (4) overall perception of report content. RESULTS: Feedback was received from 66 of the 138 operational partners requesting ESP products during the fiscal year 2015 through 2018. Requests commonly informed clinical guidance (58%), identified future research needs (58%), and determined VHA-specific implementation strategy (47%). A total of 91% of responders used reports, typically within 3 months after completion (82%). Use was typically for VHA publications and/or presentations to inform VHA policy or guidance (26%), to inform intervention/strategy adoption decisions (23%) and for medical device and therapy procurement decisions (21%). Over half (53%) of respondents indicated that it would be useful for ESP reports to include more guidance on implementing findings. CONCLUSION: Our survey of learning health system decision-makers' actual patterns and timing of evidence use provides valuable new information that can further support development of other health system and evidence producer partnerships and identifies key needs for better supporting health systems' uptake of evidence.

User survey finds rapid evidence reviews increased uptake of evidence by Veterans Health Administration leadership to inform fast-paced health-system decision-making.

BACKGROUND: To provide evidence synthesis for faster-paced healthcare decision-making, rapid reviews have emerged as a streamlined alternative to standard systematic reviews. In 2012, the Veterans Affairs Evidence-based Synthesis Program (VA ESP) added rapid reviews to support Veterans Health Administration (VHA) operational partners' more urgent decision-making needs. VHA operational partners play a substantial role in dissemination of ESP rapid reviews through a variety of routes, including posting on the VA ESP's public website ( http://www.hsrd. RESEARCH: va.gov/publications/esp/ ). As demand for rapid reviews rises, much progress has been made in characterizing methods and practices. However, evidence synthesis organizations still seek to better understand how and when rapid reviews are being used. METHODS: The VA ESP administered an online survey to rapid review operational partners. The survey assessed the nature of decision-making needs, overall perception of review content, resulting actions, and implementation timeframe. We use descriptive statistics and narrative methods to summarize findings. RESULTS: Between October 2011 and April 2015, we completed 12 rapid reviews for 35 operational partners. Operational partners were primarily non-academic subject matter experts with VA operations' decision-making authority. The most common topic categories reviewed were policy or system (50 %) or process of care (42 %) initiatives. Median report completion time was 14.5 weeks. Survey response rate was 46 %, with at least one operational partner responding for 92 % of reports. Reviews served multiple purposes including policy directive or regulation (72 %), supporting program development and evaluation (55 %), identifying future research needs (45 %), and determining implementation strategy (45 %). Overall, operational partners' perception of report content was positive. A majority of rapid reviews were used immediately and informed actions ranking high on the Institute of Medicine's Degrees of Impact framework: 45.4 % effected change, 18.2 % inspired action, 18.2 % informed the field, 9.1 % received recognition, and 9.1 % spread a message. CONCLUSIONS: VA ESP rapid reviews have increased the VHA's uptake of evidence to inform time-sensitive system-level decision-making. Key areas of interest for future evaluation include assessing user perception of our streamlined methods and the quality of our efforts to inform users of these methods, as well as comparing the usability and impact of our rapid and standard systematic reviews.

Long enough to act? Symptom and behavior patterns prior to out-of-hospital sudden cardiac death.

BACKGROUND: Sudden cardiac death is a major cause of death in the United States. Most cases occur outside the hospital, yet little is known about the symptoms and actions of individuals who die before reaching the hospital. OBJECTIVE: The purpose of this study was to describe the symptoms, symptom management, and care-seeking patterns in sudden cardiac death victims. METHODS: This cross-sectional study used qualitative and quantitative data collection methods to obtain descriptions of symptoms and treatment-seeking delay from family members and bystanders (respondents) in 140 cases of sudden cardiac death due to presumed myocardial infarction. Decedents were identified from death certificate data from the state of Oregon in the United States. Respondents completed a survey of demographics and myocardial infarction symptoms and an in-depth interview. Narrative analysis was used to analyze qualitative data. RESULTS: Three behavior patterns or trajectory types were developed focusing on key characteristics of the symptom patterns, the meanings attributed to those symptoms, the actions taken by the decedents and their family members or bystanders, and the time course of events. Each case was categorized as 1 trajectory type. The trajectory types are Normal Day (n = 49), Something Not Right (n = 62), and Thought It Was Something Else (n = 29). The key distinction across the trajectory types is the perception and interpretation of symptoms and the resulting actions between symptom perception and death. CONCLUSIONS: This study is 1 of the first to describe what victims of sudden cardiac death are doing and thinking during the period between symptom onset and collapse. The trajectory types identified in this study suggest that misinterpretation of symptoms (the Something Not Right and Thought It Was Something Else groups) is common among victims and bystanders.