Clinical trial recruitment of people who speak languages other than english: a children's oncology group report.

BACKGROUND: Persons who speak languages other than English (LOE) are underrepresented in clinical trials; this may be due in part to inadequate multilevel resources. We conducted a survey of institutions affiliated with the Children's Oncology Group (COG) to characterize current research recruitment practices and resources regarding translation and interpretation services. METHODS: In October 2022, a 20-item survey was distributed electronically to institutions affiliated with COG to assess consent practices and resources for recruiting participants who speak LOE to COG trials. Descriptive statistics were used to summarize responses; responses were compared by institution size, type, and respondent role. RESULTS: The survey was sent to a total of 230 institutions, and the response rate was 60% (n = 139). In total, 60% (n = 83) had access to short form consents. Full consent form translation was required at 50% of institutions, and 12% of Institutional Review Boards restricted use of centrally translated consent forms. Forty-six percent of institutions reported insufficient funding to support translation costs; 15% had access to no-cost translation services. Forty-four percent (n = 61) were required to use in-person interpreters for consent discussions; the most cited barrier to obtaining consent was lack of available in-person interpreters (56%). Forty-six percent (n = 69) reported that recruiting persons who speak LOE to clinical trials was somewhat or very difficult. CONCLUSIONS: Institutions affiliated with COG face resource-specific challenges that impede recruitment of participants who speak LOE in clinical trials. These findings indicate an urgent need to identify strategies aimed at reducing recruitment barriers to ensure equitable access to clinical trials.

Defining Practice Capacity for Cancer Care Delivery to Adolescents and Young Adults in the Community Setting: 2022 Landscape Assessment Results.

Background: Adolescents and young adults (AYAs) commonly receive cancer care in the community setting, but the availability of treatment options, resources, and support services for this population is not well known. The National Cancer Institute Community Oncology Research Program (NCORP) funds a network of practices whose mission is to increase access to cancer care and clinical trials in the community setting. We describe our interdisciplinary methodological approach to identify and characterize NCORP practices where AYAs receive cancer care. Methods: NCORP practices completed a cross-sectional Landscape Assessment to describe resources and practice characteristics. We established an interdisciplinary team of stakeholders to analyze the Landscape Assessment data relating to AYAs. Through an iterative process, we assessed NCORP practice responses to questions assessing AYA cancer care capacity, determined a threshold to define practices treating AYAs, and characterized these practices. Results: We determined that practices provide cancer care to AYAs if the following criteria were met: (1) endorsed having an AYA program (n = 20), (2) AYAs comprised ≥5% of annual cancer cases (n = 55), or (3) the practice treated ≥50 AYA cancer cases annually (n = 70). Of 271 NCORP practices, 100 (37%) met any criteria, whereas 87 (32%) did not; 84 (31%) could not be classified due to missing or unknown data. Conclusion: Using an interdisciplinary process, we define practices that treat AYAs in the community. We posit a uniform approach to examine resources and practice capacity for AYAs receiving cancer care across the United States to guide future AYA-focused cancer care delivery research development.

Clinician perspectives on nutritional impairment in children undergoing cancer chemotherapy in Thailand: A qualitative descriptive study.

Objective: This study aimed to explore the perspectives of pediatric oncology clinicians in Thailand on children's gastrointestinal â€‹symptoms, eating habits, and nutrition during cancer chemotherapy. Additionally, it sought to identify factors influencing children's nutritional status, including the characteristics of the children, clinician-related factors, and hospital-level factors. Methods: The study involved pediatric oncology clinicians working at a tertiary hospital in Bangkok. Data were collected through interviews, focusing on three key areas: (1) children's gastrointestinal symptoms, eating behaviors, and nutrition, (2) clinicians' cognitions and behaviors that impact children's nutrition, and (3) environmental factors. Each participating clinician also identified a colleague who could offer additional perspectives. Interviews were conducted in the Thai language and analyzed using directed content analysis. Results: A total of 22 participants were enrolled in the study, comprising sixteen nurses, four physicians, one child life specialist, and one Hospital Nutrition Service staff member. The majority of participants were female (95.4%), with an average age of 37.77 years and an average of 15.55 years of experience in caring for children with cancer. Factors influencing children's nutritional status included the children's cancer diagnosis, treatment exposures, and symptoms. Clinicians attributed changes in children's weight and eating patterns to these symptoms. Influential clinician-related factors included current practices that impacted children's symptoms and food intake. Hospital-level factors included both direct influences on children and those arising from clinical practices. Conclusions: To optimize the nutritional status of Thai children undergoing chemotherapy, multi-level interventions are needed. These interventions should target children's symptoms, clinician knowledge, role norms, and address issues related to the hospital environment, specifically those elements that contribute to unpleasant experiences.

The Use of Medical Crowdfunding to Mitigate the Personal Costs of Serious Chronic Illness: Scoping Review.

BACKGROUND: Persons diagnosed with serious chronic illnesses and their caretakers experience multiple types of financial costs that strain their income and generate financial distress. Many turn to medical crowdfunding (MCF) to mitigate the harms of these costs on their health and quality of life. OBJECTIVE: This scoping review aims to summarize the research on MCF for persons diagnosed with serious chronic illness regarding study designs and methods; the responsible conduct of research practices; and study foci as they relate to stress, stress appraisals, and the coping processes. METHODS: This review was conducted in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. Eligible studies were conducted in countries designated as high income by the World Bank and focused on beneficiaries diagnosed with serious chronic illness. The findings of the included studies were summarized as they related to the key concepts in a conceptual framework derived from an established stress, appraisal, and coping framework and a conceptual model of financial toxicity in pediatric oncology. RESULTS: Overall, 26 studies were eligible for inclusion in the review. The main findings included a lack of integration of qualitative and quantitative approaches and the inconsistent reporting of the responsible conduct of research practices. The included studies focused on financial stressors that contributed to financial burden, such as out-of-pocket payments of medical bills, basic living expenses, medical travel expenses, and lost income owing to illness-related work disruptions. Few studies addressed stress appraisals as threatening or the adequacy of available financial resources. When mentioned, appraisals related to the global financial struggle during the COVID-19 pandemic or the capacity of social network members to donate funds. The consequences of MCF included the receipt of 3 forms of social support (tangible, informational, and emotional), privacy loss, embarrassment, and the propagation of scientifically unsupported information. Studies found that friends and family tended to manage MCF campaigns. Although most of the studies (21/26, 81%) focused on monetary outcomes, a few (5/26, 19%) concentrated on peoples' experiences with MCF. CONCLUSIONS: The identified methodological gaps highlight the need for more robust and reproducible approaches to using the copious data available on public MCF platforms. The integration of quantitative and qualitative methods will allow for nuanced explorations of the MCF experience. A more consistent elaboration of strategies to promote the responsible conduct of research is warranted to minimize risk to populations that are vulnerable and express concerns regarding the loss of privacy. Finally, an examination of the unanticipated consequences of MCF is critical for the development of future interventions to optimize existing supports while providing needed supports, financial and nonfinancial, that are lacking.

Children's Oncology Group 2023 blueprint for research: Cancer care delivery research.

The National Cancer Institute (NCI) has a 40-year history of initiatives to encourage the participation of community oncology sites into clinical trials research and clinical care. In 2014, the NCI re-organized to form the NCI Community Oncology Research Program (NCORP) network across seven research bases, including the Children's Oncology Group (COG), and numerous community sites. The COG portfolio for Cancer Care Delivery Research (CCDR), mirroring the larger NCORP network, has included two studies addressing guideline congruence, as an important marker of quality cancer care, and another focusing on financial toxicity, addressing the pervasive problems of healthcare cost. CCDR is a cross-cutting field that frequently examines intersectional aspects of healthcare delivery. With that in mind, we explicitly define domains of CCDR to propel our research agenda into the next phase of the NCORP CCDR program while acknowledging the complex and dynamic fields of clinical care, policy level decisions, research findings, and needs of communities served by the NCORP network that will inform the subsequent research questions. To ensure programmatic success, we will engage a broad interdisciplinary group of investigators and clinicians with expertise and dedication to community oncology and the populations they serve.

Symptom Clusters That Included Gastrointestinal Symptoms Among Children Receiving Cancer Treatments: A Scoping Review.

PROBLEM IDENTIFICATION: Composition and measurement of the gastrointestinal (GI) symptom cluster (SC) has been inconsistent; therefore, a gap exists in understanding of the GI SC. The purpose of this study was to synthesize findings from prior studies to better understand the GI SC and accompanying non-GI symptoms in children receiving cancer treatment. LITERATURE SEARCH: PubMed®, Embase®, CINAHL®, Scopus®, and PsycINFO® databases were searched through February 2022. Of 661 articles identified, 8 met inclusion criteria. DATA EVALUATION: A standardized investigator-developed form was used to extract data from eligible studies, including study and sample characteristics, analytic procedure, SCs that included GI symptoms, and influencing factors. SYNTHESIS: The 12 most frequently reported GI and accompanying non-GI symptoms were identified across 20 SCs. Phi correlation coefficients were calculated as indicators of strength of association between each pair of co-occurring symptoms within an SC. IMPLICATIONS FOR RESEARCH: Future studies should develop and test tools to comprehensively assess GI and accompanying non-GI symptoms and interventions that target shared underlying mechanisms.

"Both a life saver and totally shameful": young adult cancer survivors' perceptions of medical crowdfunding.

PURPOSE: Young adults (YAs) diagnosed with cancer face high financial burden at a time in their lives when they are financially vulnerable. Some turn to medical crowdfunding, that is, using social media and other means to raise funds or resources to offset medical and usual life expenses. Major research gaps exist regarding the experiences of those who pursued crowdfunding. Thus, the study purpose was to describe the perceptions of, and experiences with, medical crowdfunding among a sample of YA cancer survivors. METHODS: In February 2021, we distributed an online survey to YAs with a history of a cancer diagnosis, who had received grants from an organization that offers financial assistance. We calculated descriptive statistics on the crowdfunding sample and employed thematic analysis to analyze the open-ended questions. RESULTS: In this sample (N = 113), 46 YA cancer survivors had engaged in medical crowdfunding and shared their perceptions and experiences. Our central theme, "The Crowdfunding Compromise" captures the trade-offs participants faced, which included subthemes of "crowdfunding as useful/helpful," "factors associated with crowdfunding success," and "questioning the why?". CONCLUSIONS: Among YA cancer survivors, medical crowdfunding brings shame and stigma in addition to financial support. YA cancer survivors demonstrate resilience in their attempts to find individual solutions to financial problems created by unchecked health care costs, the US health insurance infrastructure, and lack of legislation. IMPLICATIONS FOR CANCER SURVIVORS: This study fills an important gap in understanding individual-level crowdfunding experiences. Implications include system-level approaches to addressing cancer-related financial burden and potential worsening of existing disparities through medical crowdfunding.

End-of-life palliative home care for children with cancer: A qualitative study on parents' experiences.

BACKGROUND: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. METHODS: The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. RESULTS: Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. CONCLUSION: End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.

Profiles of Work and Quality of Life among Young Adult Cancer Survivors.

Work ability, or the perception of one's ability to work presently and in the future, may impact quality of life (QOL) among young adult (YA) cancer survivors. Through a convergent mixed methods design, we explored work ability, work-related goals, and QOL among YA hematologic cancer survivors within five years of diagnosis. We described associations at the individual- and microsystem (work)- levels; and compared factors across low and high work ability groups. Participants (N = 40) completed a survey and interview via digital platforms. Qualitative analysis revealed self-assessed declines in work ability led to questioning work-related goals and influenced QOL. Integrated analysis led to the development of four profiles, growing our understanding of work's influence on QOL for YA cancer survivors, and identifying components YAs considered when contemplating work-related goals after a cancer diagnosis. Larger studies are needed to elucidate these profiles and identify modifiable factors to inform targeted interventions to improve QOL.

Individual patterns of problems with participation, activity, body function and environment in everyday life for children who completed brain tumor treatment.

PURPOSE: The study purpose was to, with the help of ICF and the CPS model, describe and explain patterns of co-occurring problems with participation in everyday life activities, body functioning and environment for children who completed brain tumor treatment. MATERIALS AND METHODS: Hospital, habilitation and school records for nine children (5-11 yrs.) diagnosed with brain tumor, were retrospectively reviewed for everyday problems after treatment completion. These problems were linked to ICF codes. Median code distribution within ICF constructs participation, body function, body structure, activity, and environment were calculated to generate typical (close to median) and atypical (distant from median) patterns of problems on individual and group levels. Two children were in-depth analyzed with collaborative problem-solving (CPS) model to identify participation problems and plausible explanations. RESULTS: In total, 4543 ICF linked codes revealed similarities and differences between individuals. The selected child-cases displayed educational challenges and peer-relational problems. The ICF codes related to activity, body function and environment revealed plausible explanations for the children's documented problems with participation in everyday life. CONCLUSIONS: The combination of ICF and CPS can provide a comprehensive view of the child's problems and guide development of participation in everyday life-focused interventions for children treated for brain tumors.Implications for rehabilitationCare should be guided by interventions and support directed at individual children and their everyday life.The International Classification of Functioning, Disability and Health (ICF) framework can support identification of the individual child's patterns of problems and how these affects the child's everyday life.It is recommended to start by identifying participation problems when using ICF to identify and describe problems in children's natural settings.The collaborative problem-solving model can guide healthcare, habilitation and school services when identifying and acting on typical and atypical problem patterns experienced by these children.

Rationale and design of Children's Oncology Group (COG) study ACCL20N1CD: financial distress during treatment of acute lymphoblastic leukemia in the United States.

BACKGROUND: The study purpose is to describe trajectories of financial distress for parents of children (ages 1-14.9 years) with newly diagnosed acute lymphoblastic leukemia (ALL). The secondary aim is to identify multilevel factors (child, parent, household, treating institution) that influence change in financial distress over time. METHODS: The study uses a prospective cohort design, repeated measurements, and mixed methods. The settings are Children's Oncology Group (COG) institutions participating in the National Cancer Institute Community Oncology Research Program (NCORP). Eligible participants are English- and/or Spanish-speaking parents or legal guardians (hereafter "parents") of index children. Parents are asked to complete a survey during their child's induction (T1) and maintenance therapy (T2), and near treatment completion (T3). Study surveys include items about (a) the child's cancer and clinical course, (b) parental socio-economic status, financial distress and financial coping behaviors, and (c) household material hardships. At least 15 parents will be invited to participate in an optional semi-structured interview. NCORP institutions that enroll at least one parent must complete an annual survey about institution resources that could influence parental financial distress. DISCUSSION: The results will inform future interventions to mitigate financial distress for parents of children diagnosed with ALL and could be instructive beyond this disease group. TRIAL REGISTRATION: This trial was initially registered with the NCI Clinical Trial Reporting Program ID: NCI-2021-03,567 on June 16, 2021. The study can be found on clinicaltrials.gov, Identifier NCT04928599 .

A Scoping Review of Biological Pathways of Integrative Interventions Used to Manage Chemotherapy-Induced Nausea and Vomiting in Children With Cancer.

BACKGROUND: As with pharmacological management approaches, characteristics of complementary and alternative medicine (CAM) interventions for managing chemotherapy-induced nausea and vomiting (CINV) in children with cancer should be considered when developing and testing these interventions and reporting the outcomes. OBJECTIVES: This systematic scoping review aimed to identify gaps and weaknesses in CAM and integrative interventions studies to prevent and manage CINV in children being treated for cancer, according to the CINV biological pathways. METHODS: This systematic scoping review was conducted under the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews guideline. Included studies were published in English before May 2020 and examined the effects of integrative interventions on CINV in children being treated for cancer. Two authors performed computerized searches and manual reviews; these authors also extracted data about study characteristics, intervention characteristics, and CINV outcomes from the studies included in the review. RESULTS: Twenty-six studies of 29 CAM interventions met eligibility criteria. Most of these studies used randomized controlled trial designs and measured CINV outcomes at least once prior to and then after the intervention. Some studies did not explicate the interval between exposure to the intervention and outcome measurements. The CAM interventions studied included 15 cognitive-behavioral interventions, 8 acupoint stimulation interventions, 5 herb/supplementation interventions, and 1 educational intervention. One study tested two CAMs and clarified the underlying biological pathways, whereas 25 studies (27 CAMs) did not illustrate pathways; the pathways were deduced from information provided in the articles. DISCUSSION: Considering the biological pathways underlying CINV while developing integrative interventions, including the CAM component, could improve intervention efficacy. Measurement of biomarkers of activity in these pathways would provide a means to test whether changes in underlying pathways mediate change in CINV. Better reporting of intervention details and study processes is needed to support replication of CAM interventions and inform translation into clinical practice.

"Now Everybody Is Thinking About Things Like That." Young Adult Cancer Survivors Reimagining Work During the COVID-19 Pandemic.

BACKGROUND: Diagnosed between ages 20 and 39 years, young adult (YA) cancer survivors have faced disruption to their lives well before the COVID-19 pandemic. Often seen as an at-risk population within cancer survivors, YAs experience the demands of a serious illness, such as cancer, alongside meeting the typical milestones of young adulthood and often have worse quality of life than their noncancer peers. There is a need to further study the effect of the COVID-19 pandemic on specific populations, including YA cancer survivors (YACS), as it relates to work. OBJECTIVES: The aim of this study was to explore working YACS' experiences during the COVID-19 pandemic and identify facets of cancer survivorship that researchers can use to explore COVID-19 survivorship further. METHODS: Secondary thematic analysis of 40 semistructured, qualitative interviews conducted through Zoom audio during the COVID-19 pandemic. YA hematologic cancer survivors were recruited through social media; they were eligible if they had completed active therapy, were within 5 years of their diagnosis, and working at the time of diagnosis. Interviews were transcribed verbatim and subjected to thematic content analysis. RESULTS: Themes surrounded COVID-19's influence on working YACS' experiences, with the overarching theme: "From solo to shared experience: A change in awareness and understanding." A subtheme was "Lesson reaffirmed: Reimagining the work environment." DISCUSSION: The consequences of COVID-19 on the overall quality of life for YACS are multilevel. Establishing the evidence for effective interventions to support YACS in the workplace, whether physical or virtual, is critically needed. Research is needed on YACS' risk and resilience factors that could ultimately impact future health and quality of life.

Exploration of Relationships Between Symptoms, Work Characteristics, and Quality of Life in Young Adult Hematologic Cancer Survivors.

This study explores relationships between individual, microsystem (work) characteristics, and quality of life (QOL) among young adult (YA; ages 20-39 years at diagnosis) hematologic cancer survivors. Forty YAs who had completed cancer therapy within the past 5 years were recruited through social media and completed an online survey. Poorer QOL was associated with higher levels of depressive symptoms, fatigue, impaired cognitive function, and poorer work ability and financial health (all p < 0.05). A comprehensive understanding of work characteristics, including work ability, may lead to multilevel interventions improving QOL. Future research should include larger, more diverse samples of YA cancer survivors.

Financial Toxicity in Adolescents and Young Adults With Cancer: A Concept Analysis.

BACKGROUND: A cancer diagnosis as an adolescent and young adult (AYA) poses exceptional challenges, including potential greater financial toxicity than older survivors experience who have had more time for career establishment and to build financial assets. Costs to patients have increased more than the past decade; prospects for AYA long-term survival have also increased. A better understanding of what financial toxicity is, how it presents, and the immediate and longer-term implications for AYAs is needed. OBJECTIVE: The aim of this study was to analyze the concept financial toxicity in AYAs diagnosed with cancer. METHODS: We used Rodgers' evolutionary method and articles published between January 2013 and December 2020. RESULTS: We identified key antecedents, attributes, and consequences of financial toxicity in AYAs and review its related terms that have often been used as surrogate terms. Attributes were financial burden, financial distress, and competing financial pressures. Consequences were mostly adverse and persistent and included engaging in various financial problem-solving behaviors, material hardship and poor financial well-being, and deteriorated quality of life. CONCLUSIONS: Results of this analysis clarify financial toxicity and provide guidance for a conceptual framework in the context of AYA cancer survivorship. Its consequences in AYAs with cancer are profound and will continue to evolve over time with changes in health systems and the economy. IMPLICATIONS FOR PRACTICE: Oncology nurses should understand the attributes and consequences of financial toxicity for AYAs throughout the cancer trajectory. Future research on financial toxicity should extend across AYAs living with other chronic illnesses and cancer survivors in other age groups.

Survivors' Dilemma: Young Adult Cancer Survivors' Perspectives of Work-Related Goals.

BACKGROUND: Young adult cancer survivors have significant work-related challenges, including interruptions to education and employment milestones, which may affect work-related goals (WRGs). The study purpose was to explore posttreatment perspectives of WRGs in a sample of young adult hematologic cancer survivors. METHODS: This qualitative descriptive study used social media to recruit eligible cancer survivors (young adults working or in school at the time of cancer diagnosis). Data were collected through telephone semi-structured interviews and analyzed using directed content analysis, followed by thematic content analysis to identify themes. FINDINGS: The sample (N = 40) were mostly female (63.5%), White (75%), and diagnosed with Hodgkin lymphoma (57.5%); most worked in professional (40%) or health care (23%) roles. The overarching theme, "Survivors' Dilemma," highlights a changed perspective on work-related fulfillment and financial obligations, capturing survivors' decision-making process regarding work. Three subthemes illustrated questions that participants contemplated as they examined how their WRGs had changed: (a) Self-identity: Do I want to do this work? (b) Perceived health and work ability: Can I do this work? and (c) Financial toxicity: Can I afford to/not to do this work? CONCLUSIONS/APPLICATION TO PRACTICE: Participants experienced a state of dilemma around their WRGs, weighing areas around self-identity, perceived health and work ability, and financial toxicity. Findings suggest occupational health nurses should be aware of challenges surrounding WRGs, including how goals may change following a cancer diagnosis and treatment, and the potential stressors involved in the Survivors' Dilemma. Occupational health nurses should assess for these issues and refer young survivors to employee and financial assistance programs, as necessary.

Applying Community-Engaged Intervention Mapping to Preparing Nurse Scientists.

BACKGROUND: Preventing and managing chronic illness necessitates multilevel, theory-based interventions targeting behaviors, environmental factors, and personal determinants that increase risk for illness onset, greater burden, and poorer outcomes. OBJECTIVES: The purpose of this article is to provide the basis for multilevel interventions, describe community-engaged intervention mapping as an approach to designing theory-based interventions, and discuss potential benefits of applying community-engaged intervention mapping in preparing nurse scientists to build programs of interdisciplinary research in preventing and managing chronic illness. METHODS: Community-engaged intervention mapping integrates two methodological approaches: intervention mapping and community-engaged research. RESULTS: The six-step intervention mapping approach provides a logical structure for preparing nurse scientists in designing, adapting, and implementing multilevel, theory-based interventions. Community-engaged research approaches offer principles and direction for engaging patients, clinicians, community members, and other stakeholders throughout the research process. Integrating these methods retains the theoretical integrity of interventions; improves the relevance and timely completion of the research and its products; and enhances intended beneficiaries and the community's understanding, trust, and use of the results. DISCUSSION: Potential benefits of preparation in community-engaged intervention mapping to nurse scientists and nursing science include explicit consideration of multilevel factors influencing health. Additional benefits include guidance for linking relevant constructs from behavior- and environment-oriented theories with evidence-based methods for affecting desired changes in care and quality of life outcomes. Moreover, enhancement of the theoretical fidelity of the intervention, explication of the mechanisms influencing change in the primary outcome, and improved relevance and feasibility of interventions for intended beneficiaries and potential adopters are other benefits.

He knew more than we wanted him to know: Parent perceptions about their children's sense of pediatric cancer-related financial problems.

BACKGROUND: Treatment for pediatric cancer generates costs that place sizeable demands on family finances relative to household income. Little is known about whether children sense that their cancer has created financial problems for the family. The study purpose was to describe parents' perceptions about whether their child sensed that pediatric cancer created financial problems for their family. PROCEDURE: Family Communications Theory informed our study. We used descriptive statistics and content analysis to examine parents' (n = 417) responses to questions about the child's sense of pediatric cancer-related financial problems from a larger survey study. RESULTS: Approximately 56.2% of parents indicated that their child had no sense of the pediatric cancer-related financial problems and 44.1% indicated their child had some. Proportions of children perceived to sense these financial problems steadily increased with age grouping, while proportions perceived to have none declined. With content analysis, we identified cognitive capacity as the key child factor influencing children's sense of these problems. Influential context factors included social norms, observed changes in family routines and spending patterns, and overheard conversations between adults. Child psychological outcomes included guilt, anxiety about money, and feelings of being a burden. CONCLUSION: Pediatric oncology professionals and staff should be mindful of parent preferences about burdening children with sensitive financial information, and modify their behaviors and processes accordingly. They can also provide anticipatory guidance and psycho-education about psychological responses related to the effects of pediatric cancer on family finances and the role of cognitive development in the evolution of children's awareness of those effects.

Positive psychological states and stress responses in caregivers of adults receiving an allogeneic bone marrow transplant: A study protocol.

AIMS: This protocol directs a study that aims to: (a) describe the caregiver's experience over 8-12 weeks after an index adult patient's allogeneic bone marrow transplant (BMT) for advanced cancer using a case-oriented approach and mixed methods, with qualitative methods in the foreground; and (b) explore networks of relationships among psycho-neurological symptoms, positive psychological states and caregiver health. DESIGN: Case-oriented longitudinal design using multiple data types and analytic approaches. METHODS: Data will be collected from 10-12 caregivers. The sample will be recruited from a large public hospital in the southeastern United States using maximum variation sampling (e.g., caregiver race/ethnicity, relationship to patient, age, education, and number of caregiving roles). Participants will be asked to complete weekly surveys, have their blood drawn bi-weekly and participate in an interview each month during the study period (~100 days). Aim 1 analysis will include directed content analysis and case-oriented visual analysis. Aim 2 analysis will include symptom network estimation of psycho-neurological symptoms, positive psychological states, and caregiver health. Institutional review board approval was obtained August 2018. DISCUSSION: Results will provide an in-depth description of caregivers' experiences in the 100 days after BMT. Findings will inform generation of hypotheses and identification of targets for interventions to improve caregiver's experiences after BMT. IMPACT: This in-depth multi-method longitudinal study to describe caregivers of adult patients receiving an allogeneic BMT is an essential step in understanding caregivers' complex responses to chronic stress and the role of positive psychological states. The results from this study will inform future research on chronic stress processes, intense caregiving, and intervention development.

Using ICF to Describe Problems With Functioning in Everyday Life for Children Who Completed Treatment for Brain Tumor: An Analysis Based on Professionals' Documentation.

Background: Children treated for brain tumors often experience persistent problems affecting their activity performance and participation in everyday life, especially in school. Linking these problems to the International Classification of Functioning, Disability and Health (ICF) classification system can be described as affecting body function, activity performance, and/or participation. Services involved in the everyday life of the child have different focus and goals when meeting the child in context, which advantage the use of ICF to overcome this impediment to follow-up and provide comprehensive support for children who have completed treatment for a brain tumor. Aim: The aim of the study was to use the ICF classification system to describe how professionals in healthcare, habilitation, and school document problems with everyday life functioning at body, activity, and participation levels for children who completed treatment for a brain tumor. Materials and Methods: A retrospective review of records from healthcare, habilitation, and school concerning nine children completed treatment for brain tumor was implemented. Identified problems in everyday life were linked to ICF codes. Descriptive statistics of ICF-linked code frequency supplemented by network visualization diagrams viewing the co-occurrence between codes within the body, activity participation, and environmental components were performed. Results: Most documented problems were found in healthcare records, whereas the documentation in habilitation and school was sparse. The frequently occurring codes, independent of record source, were linked to the body function component, and ICF-linked problems in habilitation and school were salient in the activity and participation component. To gain a holistic picture of relations between ICF codes and problems, network visualization diagrams were used to illustrate clusters of problems. Conclusion: Code prevalence likely reflects where healthcare professionals and educators focus their attention when meeting the needs of children treated for a brain tumor in context. To maximize the comprehensive view of functioning and participation of children in everyday life, the full range of difficulties regarding body impairments, activity limitations, and participation restrictions must be identified and linked to each other in patterns of co-occurrence, which the ICF facilitate. However, ICF provides no guidance on how to identify networks of problems within the body, activity, and participation. Identifying such networks is important for building comprehensive interventions for children.