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.

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.

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.

"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.

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.

"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.

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.

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.

Impact of Survivorship Care on Young Adult Survivors of Childhood Cancer With Post-Traumatic Stress Symptoms.

OBJECTIVES: To assess post-traumatic stress symptoms (PTSSs) in young adult survivors of childhood cancer not receiving survivorship care and to determine whether attending a survivorship-focused healthcare visit was associated with changes in PTSSs. SAMPLE & SETTING: 44 young adult survivors from the Yale Cancer Center in Connecticut without prior survivorship clinic attendance. METHODS & VARIABLES: As part of a larger trial, participants were randomized to a model of survivorship-focused health care. The University of California at Los Angeles Post-Traumatic Stress Disorder (PTSD) Reaction Index assessed PTSS severity and frequency before and after the visit. RESULTS: At baseline, almost half of the participants were classified as partial PTSD likely or PTSD likely. Many met criteria for elevated levels of individual symptoms, particularly avoidance or numbing. At follow-up, PTSSs did not differ significantly from baseline. IMPLICATIONS FOR NURSING: Survivorship care should be encouraged by nurses in healthcare settings that do not specialize in caring for long-term survivors. Nurses should facilitate screening for PTSSs and promote interventions among survivors completing cancer therapy to help them transition to survivorship care.

Longitudinal Analysis of Parent Communication Behaviors and Child Distress during Cancer Port Start Procedures.

BACKGROUND: The roles parents play in supporting their child during painful cancer procedures have been studied as communication strategies versus a broader caring framework and from a cross-sectional versus longitudinal perspective. OBJECTIVES: To examine the longitudinal change in parent communication behaviors over repeated cancer port start procedures experienced by their children. METHODS: This study used a longitudinal design. Two trained raters coded 104 recorded videos of port starts from 43 children being treated for cancer. This included 25 children with two video-recorded port starts and 18 children with three (T1, T2, T3). The Parent Caring Response Scoring System derived from Swanson's Caring Theory was used to code parent communication behaviors as caring responses during their children's port starts. Three 3- to 5-minute slices (pre-port start, during, and post-port start) were coded for each video. Mixed modeling with generalized estimating equations and Friedman test were used to analyze longitudinal change in parent behaviors. RESULTS: Significant differences were found between T1 versus T3 in eye contact (ß = -1.05, p = .02), distance-close-enough-to-touch (ß = -0.81, p = .03), nonverbal comforting (ß = -1.34, p = .04), and availability (ß = -0.92, p = .036), suggesting that more parents used communication behaviors at T3 compared with T1. Parent burdensome or intrusive questions (e.g., Why do you cry? ß = -1.11, p = .03) and nonverbal comforting (ß = -1.52, p = .047) increased from T2 to T3. The median values of parent communication behaviors overall had no significant changes from T1 to T3. CONCLUSION: Parents adjusted to use more nonverbal caring behaviors as their child experienced additional port starts. Experimental studies should be designed to help parents use caring behaviors to better support their children during cancer procedures.

Observational Coding Systems of Parent-Child Interactions During Painful Procedures: A Systematic Review.

BACKGROUND: Parent interactions with their child can influence the child's pain and distress during painful procedures. Reliable and valid interaction analysis systems (IASs) are valuable tools for capturing these interactions. The extent to which IASs are used in observational research of parent-child interactions is unknown in pediatric populations. OBJECTIVES: To identify and evaluate studies that focus on assessing psychometric properties of initial iterations/publications of observational coding systems of parent-child interactions during painful procedures. METHODS: To identify and evaluate studies that focus on assessing psychometric properties of initial iterations/publications of observational coding systems of parent-child interactions during painful procedures. Computerized databases searched included PubMed, CINAHL, PsycINFO, Health and Psychosocial Instruments, and Scopus. Timeframes covered from inception of the database to January 2017. Studies were included if they reported use or psychometrics of parent-child IASs. First assessment was whether the parent-child IASs were theory-based; next, using the Society of Pediatric Psychology Assessment Task Force criteria IASs were assigned to one of three categories: well-established, approaching well-established, or promising. RESULTS: A total of 795 studies were identified through computerized searches. Eighteen studies were ultimately determined to be eligible for inclusion in the review and 17 parent-child IASs were identified from these 18 studies. Among the 17 coding systems, 14 were suitable for use in children age 3 years or more; two were theory-based; and 11 included verbal and nonverbal parent behaviors that promoted either child coping or child distress. Four IASs were assessed as well-established; seven approached well-established; and six were promising. CONCLUSIONS: Findings indicate a need for the development of theory-based parent-child IASs that consider both verbal and nonverbal parent behaviors during painful procedures. Findings also suggest a need for further testing of those parent-child IASs deemed "approaching well-established" or "promising".

Parent Caring Response Scoring System: development and psychometric evaluation in the context of childhood cancer-related port starts.

RATIONALE: Multiple observational coding systems have been developed and validated to assess parent-child interactions during painful procedures. Most of these coding systems are neither theory-based nor do they well represent parent nonverbal behaviours. AIMS: Develop the Parent Caring Response Scoring System (P-CaReSS) based on Swanson's Theory of Caring and test its psychometric properties in children in cancer port starts. METHODS: A hybrid approach of inductive and deductive coding was used to formulate the preliminary observational codes for the P-CaReSS. Twenty-nine children, each with one video-recording of port start available, were selected from the parent study (R01CA138981) to refine the P-CaReSS, train coders and test inter-rater reliability. Videos of another 43 children were used to evaluate the construct validity of P-CaReSS. Per cent agreement and Cohen's kappa were used to present the inter-rater reliability. Spearman rank-order correlations were used to report the construct validity. RESULTS: The 18-item P-CaReSS includes three types of parent behaviours: verbal, nonverbal and emotional behaviours. These parent interaction behaviours comprise five caring domains - knowing, being with, doing for, enabling, and maintaining belief - and one noncaring domain. On average the per cent agreement was 0.82 for the P-CaReSS overall, with average per cent agreements above 0.80 for both verbal and nonverbal behaviours. Kappa coefficient was 0.81 for the emotional behaviour. The behavioural codes in the P-CaReSS showed significant correlations with independent ratings of parent distress, child distress and child cooperation. CONCLUSIONS: The P-CaReSS is a promising tool that can be used to evaluate parent verbal, nonverbal and emotional behaviours during cancer-related port starts. This observational tool can be used to guide the development of nursing interventions to help parents caring for their child during cancer procedures.

Parents' Verbal and Nonverbal Caring Behaviors and Child Distress During Cancer-Related Port Access Procedures: A Time-Window Sequential Analysis.

PURPOSE/OBJECTIVES: To study the relationship between parental verbal and nonverbal caring behaviors and child distress during cancer-related port access placement using correlational and time-window sequential analyses.
. DESIGN: Longitudinal, observational design.
. SETTING: Children's Hospital of Michigan and St. Jude Children's Research Hospital.
. SAMPLE: 43 child-parent dyads, each with two or three video recordings of the child undergoing cancer-related port placement.
. METHODS: Two trained raters coded parent interaction behaviors and child distress using the Parent Caring Response Scoring System and Karmanos Child Coping and Distress Scale, respectively. Mixed modeling with generalized estimating equations examined the associations between parent interaction behaviors and parent distress, child distress, and child cooperation reported by multiple raters. Time-window sequential analyses were performed to investigate the temporal relationships in parent-child interactions within a five-second window.
. MAIN RESEARCH VARIABLES: Parent caring behaviors, child distress, and child cooperation.
. FINDINGS: Parent caring interaction behaviors were significantly correlated with parent distress, child distress, and child cooperation during repeated cancer port accessing. Sequential analyses showed that children were significantly less likely to display behavioral and verbal distress following parent caring behaviors than at any other time. If a child is already distressed, parent verbal and nonverbal caring behaviors can significantly reduce child behavioral and verbal distress.
. CONCLUSIONS: Parent caring behaviors, particularly the rarely studied nonverbal behaviors (e.g., eye contact, distance close to touch, supporting/allowing), can reduce the child's distress during cancer port accessing procedures.
. IMPLICATIONS FOR NURSING: Studying parent-child interactions during painful cancer-related procedures can provide evidence to develop nursing interventions to support parents in caring for their child during painful procedures.

A mindful self-compassion videoconference intervention for nationally recruited posttreatment young adult cancer survivors: feasibility, acceptability, and psychosocial outcomes.

PURPOSE: Young adult (YA) cancer survivors report substantial distress, social isolation, and body image concerns that can impede successful reintegration into life years after treatment completion. Mindful Self-Compassion (MSC) interventions focus on developing mindfulness and self-compassion for managing distress, hardships, and perceived personal inadequacies. An MSC intervention would be beneficial in supporting YA survivors' management of psychosocial challenges that arise in survivorship; however, a telehealth intervention modality is essential for reaching this geographically dispersed population. We conducted a single-arm feasibility study of an MSC 8-week videoconference intervention for nationally recruited YA survivors (ages 18-29). METHODS: The MSC intervention was group-based, 90-minute videoconference sessions, held weekly over 8 weeks, with audio-supplemented home practice. Feasibility and acceptability were assessed via attendance rate and an intervention satisfaction scale. Baseline to post-intervention changes in psychosocial outcomes (body image, anxiety, depression, social isolation, posttraumatic growth, resilience, self-compassion, mindfulness) were assessed using paired t tests and Cohen's d effect sizes. RESULTS: Thirty-four participants were consented and 25 attended a videoconference group. Feasibility was established with 84% attending at least six of the eight sessions, and intervention acceptability was high (M = 4.36, SD = 0.40, score range = 1-5). All psychosocial outcomes, except for resilience, demonstrated significant changes (p < 0.002), with medium to large effect sizes (Cohen's d > 0.5). CONCLUSION: YA survivors are interested in receiving an MSC videoconference intervention. Feasibility, acceptance, and potential psychosocial benefits of the intervention were demonstrated. Findings can be applied toward the design of an efficacy randomized controlled trial to improve quality of life for YA survivors in transition after cancer treatment.

Fathers' contributions to the management of their child's long-term medical condition: a narrative review of the literature.

CONTEXT: Fathers' contributions to the management of long-term childhood medical conditions are under-represented in the literature; therefore, the full extent of their involvement is poorly understood by practitioners and researchers, so strategies for promoting their involvement have not yet been fully considered. OBJECTIVE: To review studies of fathers' actual contributions in a wide range of conditions, the potential to optimize their contribution through additional interventions by health professionals and a direction for future research. DESIGN: Narrative review of the literature. METHODS: CINAHL, Medline, PsychInfo and ERIC databases were searched electronically between the years 1995-2008. The terms adherence, adjustment, child, chronic, compliance, concordance, condition, coping, disease, father, illness, information, long-term, management/intervention, mother, role, self-care and treatment were searched for separately and in combination. English language papers reporting primary research were selected and supplemented by hand-searching reference lists. Thirty-five papers (arising from 29 studies) met criteria and were selected for narrative review. RESULTS: Five themes were identified: (i) the impact of long-term conditions on fathers' ability to promote their child's well-being, (ii) factors influencing fathers' involvement in health care, (iii) personal growth/beneficial effects for fathers, (iv) the impact of father's involvement on family functioning and (v) strategies that increase fathers' participation in their child's health care and in research investigating fathers' participation. CONCLUSIONS: The review suggests that fathers' involvement in children's health care can positively impact on fathers', mothers' and children's well-being and family functioning. A range of strategies are identified to inform the promotion of fathers' contributions and future research investigating their input.