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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 rehabilitation Care 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.

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.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.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.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.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.

Background Diagnosed between ages 20-39, 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 non-cancer 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 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'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.

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.

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.

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.Case-oriented longitudinal design using multiple data types and analytic approaches.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.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.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.目的: 本方案为研究提供指导, 旨在: (a) 采用以病例为导向的方法和混合法, 描述护理人员在成年癌症晚期患者异基因骨髓移植 (BMT) 后8-12周内的护理经验及定性方法; 以及 (b) 探索心理神经症状、积极心理状态和照料者健康之间的关系网络。 设计: 采用多种数据类型和分析方法的面向案例的纵向设计。 方法: 数据将由10-12名护理人员提供。样本取自美国东南部的一家大型公立医院, 采用最大变异抽样 (例如, 护理人员的种族/民族、与患者的关系、年龄、教育程度和护理人员的数量) 方法。经要求, 参与者将应完成每周调查, 每两周抽一次血, 并应在研究期间 (约100天) 参加访谈, 频率控制在每月一次。目标1分析将包括定向内容分析和案例可视化分析。目标2分析将包括心理神经症状、积极心理状态以及护理人员健康症状网络评估。机构审查委员会于2018年8月获得批准。 讨论: 可通过研究结果对护理人员在骨髓移植后100天的经历进行深入描述。研究结果将有助于提出假设并确定干预目标, 以便改善护理人员在骨髓移植后的经历。 影响: 此项多方法纵向研究较为深入, 旨在对接受同种异体骨髓移植的成年患者护理人员进行描述, 是了解护理人员复杂慢性应激反应和积极心理状态作用的重要一步。本研究结果将有助于未来慢性应激过程、高强度护理和干预发展研究。.

Objectives Guided by Mishel's uncertainty in illness theory, patterns of change in uncertainty were explored over time for patients with prostate cancer and their partners. In addition, the relationships between uncertainty and its antecedents were examined, and the role effects (patient versus partner) on these relationships were assessed. Sample & setting This study is a secondary analysis of the longitudinal data collected from a randomized clinical trial. Methods & variables The current authors fitted multiple-level models that included time-invariant baseline variables (sociodemographics and cancer factors) and time-varying variables (uncertainty, symptoms, and social support) measured at baseline and at 4, 8, and 12 months thereafter. Results No statistically significant patterns of change in uncertainty over time were detected. Partners reported greater uncertainty than patients. Higher uncertainty was associated with more general and prostate cancer-specific symptoms, recurrent and advanced prostate cancer, higher prostate-specific antigen level, and lower social support. More urinary symptoms were associated with greater uncertainty in patients than in partners. Implications for nursing Uncertainty management can be tailored for and target symptom management and social support.

OBJECTIVE: Illness uncertainty is a significant source of psychological distress that affects cancer patients’ quality of life (QOL). Mishel’s uncertainty in illness theory (UIT) proposes that illness uncertainty influences an individual’s use of coping strategies, and directly and indirectly influences their QOL. This study tested the relationships depicted in the adapted UIT in cancer patients. METHODS: This cross-sectional study is a secondary analysis of the baseline data from a randomized clinical trial (N = 263 prostate cancer patients). Patients were diagnosed with localized (64.6%), biochemical recurrent (12.6%), or advanced (22.8%) prostate cancer. Uncertainty, coping (avoidant and active coping strategies), and QOL (physical and mental well-being) were measured using the Mishel’s uncertainty of illness scale, Brief COPE, and the Medical Outcomes Study 12-item short form (SF-12), respectively. We used path analysis to achieve the research aim. RESULTS: Patients’ illness uncertainty directly, negatively influenced their physical well-being (P < .001) and mental well-being (P < .05). Patients’ illness uncertainty was positively related to their avoidant coping strategies (P < .001). Patients’ active and avoidant coping strategies influenced their mental well-being (P < .001). Uncertainty also negatively influenced mental well-being through avoidant coping strategies. The model had excellent fit to the data. CONCLUSIONS: Our findings have indicated the potential of improving QOL by decreasing illness uncertainty and reducing avoidant coping strategies. Future research is needed to better understand the complex relationships between illness uncertainty, coping strategies, and domains of QOL among patients with different types of cancer using longitudinal research.

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.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.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.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.

Objectives To examine parent perception of how the physical and cultural environment of the paediatric intensive care unit impacted the implementation of family-centred care as outlined by the Institute for Patient and Family Centered Care. Research design A qualitative descriptive design utilizing secondary analysis from a longitudinal study. Sixty-one interviews with three mothers and three fathers (31 interviews with mothers, 30 interviews with fathers) of infants with complex congenital heart defects treated in a paediatric intensive care unit were subjected to secondary analysis via content analysis. The previously completed individual interviews with parents took place at least monthly ranging from soon after birth of their infant to one year of age or infant death, whichever occurred first. Findings The family-centred care core concepts of information sharing, participation, respect and dignity were present in parent interviews. Parents indicated that the physical and cultural environment of the pediatric intensive care unit impacted their perceptions of how each of the core concepts was implemented by clinicians. The unit environment both positively and negatively impacted how parents experienced their infant’s hospitalisation. Conclusion In the paediatric intensive care unit, family centred care operationalised as policy differed from actual parent experiences. The impact of the physical and cultural environment should be considered in the delivery of critical care, as the environment was shown to impact implementation of each of the core concepts.

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.

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.

OBJECTIVE We conducted meta-analyses and meta-analytic structural equation modeling of longitudinal studies among cancer survivors to (a) quantify associations between psychosocial predictors and physical activity, (b) test how psychosocial predictors combine to influence physical activity, and (c) identify study, demographic, and clinical characteristics that moderate associations. METHOD Eligible studies used a longitudinal, observational design, included a sample of cancer survivors, and measured both a psychosocial predictor at baseline and physical activity at a later time-point. Of 2,431 records located through computerized searches, 25 independent tests (N = 5,897) met the inclusion criteria for the review. Random effects meta-analyses and meta-analytic structural equation modeling were conducted. RESULTS Eight psychosocial predictors of physical activity were identified. Self-efficacy (r+ = 0.26) and intentions (r+ = 0.33) were the strongest predictors in bivariate analyses. The structural equation models included attitudes, injunctive norms, self-efficacy, intentions, and physical activity (k = 22, N = 4,385). The model with the best fit, χ2(2) = 0.11, p = .95, root mean square error of approximation = .00, comparative fit index = 1.00, Tucker-Lewis index = 1.00, indicated that all specified paths were significant. Intentions were the strongest predictor of physical activity (β = 0.27, p < .001), and attitudes and self-efficacy were strong predictors of intentions (both βs = 0.29, ps < .001). Few significant moderators were observed. CONCLUSION This review indicates that self-efficacy and intentions are direct predictors of physical activity in cancer survivors. Further, attitudes and norms predict physical activity through intentions. Findings inform intervention development to increase physical activity engagement among cancer survivors. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Background To describe how pediatric cancer-induced financial distress and perceptions of their social role affected fathers' psychological responses to this distress, and quality of life (QOL) for them and their families. Procedure We analyzed father-only responses from a larger cross-sectional survey study about the impact of pediatric cancer-induced financial distress on parents. Our analytic sample was n = 87 fathers who participated in the larger study. We analyzed their data using descriptive statistics and directed content analysis. Results Conflicting role responsibilities (be there for child; work to maintain income and insurance coverage) seemed to generate responses resembling characteristic posttraumatic stress symptoms in reaction to acute declines in family finances and/or the chronic stress of insufficient finances to meet financial demands, that is, financial trauma. Fathers' personal sense of not being able to adequately provide for their child with cancer and also meet their family's basic needs produced embarrassment and humiliation, which led to discomfort talking about finances; fear, persistent thoughts and anxiety about money; reduced joy; beliefs that they did not deserve to express their needs; and feeling vulnerable to repeated financial stressors. Conclusions Pediatric cancer-induced financial burden contributed to fathers' symptom severity and burden, and QOL declines. Clinicians should develop sensitivity to the multiple ways that pediatric cancer affects individuals and families. Future research should examine the effects of pediatric cancer-induced financial burden on mothers, and develop ways to sensitively and systematically assess financial burden, associated psychological responses and declines in QOL, and intervene as indicated.

Purpose The study purpose was to map and identify gaps in the recent (∼2011–2017) literature on the costs of illness to parents of children diagnosed with cancer. The costs of illness include direct costs, indirect costs and psychosocial costs. Methods A systematic scoping review was conducted. Data sources included PubMed, CINAHL, PsychInfo and EconLit. Studies were eligible for inclusion if they were conducted in high-income countries, published in the English language, and reported parent perspectives on direct costs, indirect costs and/or psychosocial costs due to financial costs. Results 25 studies were eligible. Most were conducted in Canada, the USA, or Sweden. The studies used a variety of designs, target populations, time frames and sample sizes. Intervention studies were lacking. Across studies fathers were underrepresented. While no study comprehensively measured costs of illness, more studies used rigorous methods and considered psychosocial costs. Financial costs were measured using a micro-costing or general estimates approach. Psychosocial costs were measured using a variety of PRO measures, some of which were investigator developed. The studies provide evidence that financial toxicity occurs in pediatric oncology. Conclusions Future studies should comprehensively measure costs using a consistent set of established measures and make efforts to recruit fathers to cost of illness research. Interventions to mitigate financial toxicity are needed.

Problem The Institute for Patient- and Family-Centered Care's (IPFCC) definition of family-centered care (FCC) includes the following four core concepts: respect and dignity, information sharing, participation, and collaboration. To date, research has focused on the provider experience of FCC in the PICU; little is known about how parents of children hospitalized in the pediatric intensive care unit (PICU) experience FCC. Eligibility Criteria Articles were included if they were published between 2006 and 2016, included qualitative, quantitative, or mixed methods results, related to care received in a PICU, and included results that were from a parent perspective. Sample 49 articles from 44 studies were included in this review; 32 used qualitative/mixed methods and 17 used quantitative designs. Results The concepts of respect and dignity, information sharing, and participation were well represented in the literature, as parents reported having both met and unmet needs in relation to FCC. While not explicitly defined in the IPFCC core concepts, parents frequently reported on the environment of care and its impact on their FCC experience. Conclusions As evidenced by this synthesis, parents of critically ill children report both positive and negative FCC experiences relating to the core concepts outlined by the IPFCC. Implications There is a need for better understanding of how parents perceive their involvement in the care of their critically ill child, additionally; the IPFCC core concepts should be refined to explicitly include the importance of the environment of care.

Background To reduce the burden of chronic illness, prevention and management interventions must be efficacious, adopted and implemented with fidelity, and reach those at greatest risk. Yet, many research-tested interventions are slow to translate into practice. Purpose This paper describes how The University of North Carolina at Chapel Hill School of Nursing’s NINR-funded institutional pre- and postdoctoral research-training program is addressing the imperative to speed knowledge translation across the research cycle. Methods The training emphasizes six research methods (“catalysts”) to speed translation: stakeholder engagement, patient-centered outcomes, intervention optimization and sequential multiple randomized trials (SMART), pragmatic trials, mixed methods approaches, and dissemination and implementation science strategies. Catalysts are integrated into required coursework, biweekly scientific and integrative seminars, and experiential research training. Trainee and program success is evaluated based on benchmarks applicable to all PhD program students, supplemented by indicators specific to the catalysts. Trainees must also demonstrate proficiency in at least two of the six catalysts in their scholarly products. Proficiency is assessed through their works in progress presentations and peer reviews at T32 integrative seminars. Discussion While maintaining the emphasis on theory-based interventions, we have integrated six catalysts into our ongoing research training to expedite the dynamic process of intervention development, testing, dissemination and implementation. Conclusions Through a variety of training activities, our research training focused on theory-based interventions and the six catalysts will generate future nurse scientists who speed translation of theory-based interventions into practice to maximize health outcomes for patients, families, communities and populations affected by chronic illness.

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.

Social media use is ubiquitous among young adults. Young adults with cancer must make important decisions about where, what, and how to share information on social media. Oncology nurses are in a unique position to start conversations about the risks and benefits of social media use. This column aims to review a variety of social media platforms that may be used by young adults with cancer and provide guidance to nurses on initiating open dialogue with young adults about social media usage. .

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.

Background Adolescents and young adults (AYAs) face increased risk for physical, social, and cognitive late complications of cancer therapy. Strategies are needed to better engage AYAs in survivorship research. Objectives This study aimed to determine the feasibility of enrolling AYAs within six months of diagnosis to a survivorship study and assess their health concerns and survivorship care preferences. Methods Patients aged 15–34 years who were diagnosed with leukemia, lymphoma, or sarcoma at three Connecticut hospitals from 2008–2011 were identified and recruited by mail. Participants and their physicians received a survivorship care plan. Participants completed surveys at 6 months and 18 months after diagnosis. Findings Recruiting AYAs to survivorship research remains challenging, even when approaching them soon after diagnosis. Novel strategies are needed for nurses and other healthcare team members to engage AYAs in survivorship care and research.

Background Pediatric cancer-induced financial burden is source of stress for parents, particularly mothers, single parents, and parents with lower incomes. This financial burden has been linked to poorer family quality of life (QOL) in terms of new onset material hardships, and could also affect individual QOL in terms of parents' stress-related symptoms. Our purpose was to describe pediatric cancer-induced financial burden among parents of children with that diagnosis, its effects on their stress-related symptoms (distress, anxiety, cognition impairment, sleep impairment), and associations between select risk factors (relationship to the child, marital status, income) and the extent that financial burden affected parents' symptoms. Procedure We recruited via two parent-led groups and collected data using an online survey. We calculated frequencies of demographic characteristics, financial burden, and symptoms. We used chi-square statistics to examine bivariate associations between the risk factors and extent that cancer-related financial burden affected parents' symptoms. Results Most (63.6%) respondents reported that pediatric cancer severely affected their finances. The majority (50.23-69.86%) also reported that this burden severely affected their symptoms. Marital status, income, and, for some symptoms, relationship to the child were associated with the extent that financial burden affected the symptoms. Greater proportions of mothers (53-73.5%), divorced/single parents (69.2-90.4%), and parents in the lowest income category (77.3-95.5%) experienced severely affected symptoms compared to fathers (41.7-59.5%), married/partnered parents (41.7-59.5%), and parents in the highest income category (28.6-42.9%). Conclusion Financial burden and symptoms are fitting targets for interventions to improve family and individual QOL in the context of pediatric cancer.

The purpose of this article is to explicate a conceptual framework for financial toxicity in pediatric oncology to guide nursing practice and research. The framework is based on one for financial outcomes of severe illness attributed to Scott Ramsey and adapted by the National Cancer Institute to describe relationships between preexisting factors, a cancer diagnosis, financial distress, and health outcomes for adult cancer patients and survivors. The adaption for pediatric oncology was informed by the results of a systematic scoping review to identify advances and gaps in the recent literature about the personal costs of illness to parents in the pediatric oncology context. The conceptual model for pediatric oncology indicates that existing and dynamic parent and family factors, other risk and protective factors, the child’s diagnosis and treatment, and treatment-related financial costs can affect parent financial coping behaviors and parent health and family financial outcomes, all of which may affect child outcomes. Additionally, nursing’s historic emphasis on holistic care, quality of life, and health determinants justify attention to financial toxicity as a nursing role. Therefore, pediatric oncology nurses must be sensitive to financial toxicity and related risk factors, become comfortable communicating about treatment-related financial costs and financial distress with parents and other health professionals, and collaborate in efforts that draw on the expertise of multiple stakeholders to identify potential or actual financial toxicity in parents and mitigate its impact on childhood cancer health outcomes through direct care, referral, research, quality improvement, and health advocacy.

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.

Psychoneurologic symptoms commonly reported by adolescents and young adults (AYAs) following hematopoetic stem cell transplantation (HSCT) include anxiety, depression, fatigue, and pain. Complementary and alternative medicine (CAM) appeals to AYAs as a means of coping with these symptoms. One example of CAM is a publicly available illness blog authored by a young adult woman undergoing HSCT. .

Background The theoretical landscape of health disparities research now emphasizes health inequities and the role that social determinants of health (SDOH) play in creating and perpetuating them. Whether National Institutes of Health (NIH) funding patterns reflect this theoretical shift is unknown. Objectives The aim of this study was to examine the National Institute of Nursing Research’s (NINR) funding for research focused on health disparities, health inequities, and SDOH, relative to other key NIH institutes. Methods Data on 32,968 projects funded by NINR, the National Cancer Institute, the National Heart, Lung, and Blood Institute, and the National Institute of Minority Health and Health Disparities (NIMHD) during the years 2000 through 2016 were downloaded from NIH RePORTER; those with health disparities, health inequity, or SDOH terms used in the abstract were identified. Descriptive statistics and a general linear model approach were used to assess differences in cumulative project counts and funding proportions, and funding trends over time. Results Overall, funding for health disparities projects was 14–19 times greater than for health inequity and SDOH projects and was more concentrated in centers and institutional training than in individual research projects. NINR’s proportion of funding for disparities projects was consistently greater than that of the National Cancer Institute and the National Heart, Lung, and Blood Institute, but not for inequities and SDOH projects. NIMHD’s proportion of funding for disparities, and inequities and SDOH projects (combined) was 2–30 times greater than that of other institutes. Over the 16-year period, funding for disparities, inequity, and SDOH projects each increased (all ps < .05); however, growth in inequities and SDOH funding was not evident in more recent years. Discussion Funding for projects focused on health equities and the SDOH lag behind theoretical shifts in the broader health disparities research arena. With the exception of NIMHD, there is a disconnect between funding for projects with a disparities orientation in institutional training and center projects relative to individual research projects. These trends have implications for nurse scientists seeking NIH funding to support health equity-oriented research.

Background Young adults with congenital heart disease (CHD) are at risk for chronic illness uncertainty in 4 domains: ambiguity about the state of their illness; lack of information about the disease, its treatment, and comorbidities; complexity of the healthcare system and relationship with healthcare providers; and unpredictability of the illness course and outcome. Chronic uncertainty has been associated with posttraumatic stress symptoms (PTSS) and posttraumatic stress disorder (PTSD). Objective The aims of this study were to explore how young adults with CHD experience uncertainty and to describe the relationship between PTSS and the appraisal and management process. Methods An exploratory, mixed methods design was used. Data were collected in person and via Skype from 25 participants (19-35 years old), who were diagnosed with CHD during childhood and able to read and write English. In-depth interviews and the University of California at Los Angeles Posttraumatic Stress Disorder Reaction Index were used to collect data. Qualitative data were analyzed using the constant comparative method. Results The 4 domains of uncertainty were evident in the narratives. The PTSD mean (SD) score was 31.3 (7.7). Six participants met criteria for PTSD. Narrative analysis revealed a relationship between severity of PTSS and the appraisal and management of uncertainty. Participants with PTSD used management strategies that included avoidance, reexperiencing, and hyperarousal. Conclusions Young adults with CHD may be at risk for the development of long-term psychological stress and PTSD in the setting of chronic uncertainty. Regular monitoring to identify PTSS/PTSD may be a means to promote treatment adherence and participation in healthcare.

Objectives Using a Life Course Health Development framework, this article summarizes what is known about the impact of cancer and its treatment on the biopsychosocial world of the adolescent and young adult. Data Sources Published peer reviewed literature, web-based resources, and cancer-related professional organizations' resources. Conclusion Adolescents and young adults with cancer, between 15 and 29 years of age, have emerged as a distinct group requiring specialized care. The demands of cancer and its treatment are often directly counter to the developmental needs of this age group and often alter those life course experiences that contribute to resilience, thriving, and flourishing. Implications for Nursing Practice Providing high-quality care to this age group requires a depth of understanding of the complexity of factors that merge to influence the developmental life course.

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 (β = −1.05, p = .02), distance-close-enough-to-touch (β = −0.81, p = .03), nonverbal comforting (β = −1.34, p = .04), and availability (β = −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? β = −1.11, p = .03) and nonverbal comforting (β = −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.

Few evidence-based, on-line resources exist to support home-based care of childhood long-term conditions.In a feasibility study, children with stages 3, 4, or 5 chronic kidney disease, parents and professionals collaboratively developed a novel Online Parent Information and Support (OPIS) application. Parents were randomized to an intervention arm with access to OPIS or a control arm without access. OPIS usage was assessed using Google Analytics. Parents in the intervention arm completed the Suitability Assessment of Materials (SAM) and User Interface Satisfaction (USE) questionnaires and participated in qualitative interviews.Twenty parents accessed OPIS with a mean of 23.3 (SD 20.8, range 2-64) visits per user. Responses from the SAM and USE questionnaires were positive, most respondents rating OPIS highly and finding it easy to use. Qualitative suggestions include refinement of OPIS components, enabling personalization of OPIS functionalities and proactive endorsements of OPIS by professionals.Implementation of OPIS into standard practice is feasible in the centre where it was developed. Suggested developments will augment reported strengths to inform ongoing testing in the wider UK network of units. Our design and methods are transferrable to developing and evaluating web-applications to support home-based clinical care-giving for other long-term conditions.

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”.

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).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.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).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.

Adolescence and young adulthood are phases of life when human growth and development can be derailed by significant challenges to physical, psychological, and social well-being. These challenges are experienced quite differently by older adolescents and young adults (AYAs) in their 20s and 30s when compared to both younger pediatric and older adult cancer patients and have distinct behavioral implications for clinical care. Understanding the biological, psychological, and social contexts of AYAs’ lives and the interface between adolescent and young adult development and cancer is critical for the delivery of optimal care for this age-defined population. Cancer-related issues such as premature confrontation with mortality, changes in physical appearance, increased dependence on parents, disruptions of social life and school/employment because of treatment, and loss of reproductive capacity become particularly distressing. They have the potential to exacerbate or complicate self-management of cancer-related symptoms, treatment side effects, and adherence to medical recommendations including medications, health-care appointments, and lifestyle modifications. This chapter reviews the supportive care interventions for AYAs that target body image, emotional and socioeconomic independence, social integration, identity formation, and educational and career directions which can enhance quality of life for this age-defined population.

Although there is a wealth of literature exploring parents? views both on the impact of children?s conditions on their families and their experiences of caring for their children, many of the studies primarily present mothers? opinions, with the fathers? views reported by proxy, often via their partners. This anomaly has been highlighted in recent years, and there has been an increase in the publication of studies that have sought fathers? views. Recruiting and interviewing fathers can present a different set of challenges to involving mothers. Drawing on some of the literature and on our own experience of accessing fathers? thoughts and stories, we would like to suggest some factors to consider in the design and implementation of studies that seek to include this group.

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.

Background Posttraumatic stress is one of many psychological late effects in young adult survivors of childhood cancer and needs to be explored thoroughly. Objective The purpose of this study was to examine the characteristics and correlates of posttraumatic stress symptoms in a sample of young adult survivors of childhood cancer. Design Cross-sectional and correlational descriptive design was used. Data was collected by a mailed survey. The University of California at Los Angeles Post Traumatic Stress Disorder Index (PTSDI) was the measure selected for the evaluation of posttraumatic stress. Setting The study took place in a medical center in the Eastern part of the United States. Participants The inclusion criteria for participants were: (a) diagnosis of childhood cancer between birth and 19 years of age; (b) 3 or more years post successful completion of cancer treatment; (c) free of active cancer; (d) at least 19 years of age; and (e) able to read and write English. A total of 51.1% ( N =46) of the potentially eligible survivors responded to the survey. The analysis was based on the data from 45 respondents who had a mean age of 27.4 years. Results The mean PTSDI score was 15.7 ( SD =11.0, range=0–43). Thirteen percent ( n =6) of participants had PTSDI scores that exceeded the cutoff point of 32, which is considered indicative of clinically significant posttraumatic stress disorder (PTSD). Participants who lived alone ( t =−2.17, p =.035), had no health insurance ( t =2.08, p =.044) and did not have a history of bone marrow transplantation ( t =4.52, p =.000) reported significantly higher scores on PTSDI than others. The clinically significant PTSD group had a significantly higher rate of living alone than the non-PTSD group ( p =.038). Conclusion Cancer-related posttraumatic stress emerges in childhood cancer survivors in young adulthood. Health care providers should screen childhood cancer survivors for posttraumatic stress so that referrals can be made to provide survivors with further assistance.

Aim. The objective of this study was to examine the factors contributing to healthy behaviour in young adult long-term survivors of childhood cancer. Background. Young adult childhood cancer survivors can adopt more healthy behaviour than the general population as a way to minimize the adverse consequences, that is, late effects of cancer and its treatment. Knowledge about the predictors of healthy behaviour in childhood cancer survivors can help providers assist young adult survivors with minimizing late effects. Design and methods. A cross-sectional correlational design and convenience sampling were used. Data were collected by mailed survey. Study measures included an investigator-developed demographic and disease form, the Mishel Uncertainty in Illness Scale-Community, the Post-traumatic Stress Disorder Index and the Health Promoting Lifestyle Profile II. Fifty-one per cent (N = 46) of eligible survivors responded to the survey. Data from 45 participants were used in the analyses. Results. 43·3% of variance in healthy behaviour was explained by a model that included uncertainty (β = −0·37, p = 0·007), post-traumatic stress symptoms (β = −0·10, p = −0·44), interactions with primary care providers (β = 0·33, p = 0·01) and a history of special educational assistance (β = −0·23, p = 0·06). Conclusion. Young adult childhood cancer survivors who have higher levels of uncertainty, higher levels of symptoms of post-traumatic stress, lower frequency of primary healthcare interaction and poorer cognitive resources were more likely to report lower levels of healthy behaviour. Relevance to clinical practice. The findings can guide the clinical assessment of young adult survivors with regard to their health behaviours and needs they may have for education and supportive care. Findings also help inform the design of health promotion interventions for this specific group of cancer survivors.

This secondary qualitative analysis of extant focus group data was performed to develop an understanding of suboptimal adherence to 6-mercaptopurine therapy in adolescents with acute lymphoblastic leukemia. Six participants, aged 16 to 23 years at the time of data collection, were interviewed about their adherence to oral maintenance chemotherapy during their treatment for acute lymphoblastic leukemia. The primary aim of the study was to understand the role of adolescent development in adolescents' perception of adherence to therapy. The secondary aim was to understand how factors other than development, including the features of the disease such as its chronic nature and family involvement, can affect treatment adherence to 6-mercaptopurine. Four broad themes emerged as critical elements in adolescent adherence to oral maintenance therapy: a desire for normalcy, egocentrism, concrete thinking, and parental involvement. Incorporation of these themes into clinical practice with adolescents may help increase adherence and improve clinical outcomes.

Background: Young adult survivors of childhood cancer are at risk for medical late effects, some of which can be managed through health promotion behaviors. However, chronic uncertainty about the future can lead to the development of posttraumatic stress symptoms (PTSS) that can interfere with health promotion behaviors. Objectives: To test a mediating model for the relationships among uncertainty, PTSS, and health promotion behaviors in young adult survivors of childhood cancer. Methods: The design was cross-sectional correlational. A convenience sample was used, and the data were collected using a mailed survey. Study measures included the Mishel Uncertainty in Illness Scale-Community Form, the Posttraumatic Stress Disorder Index, and the Health Promoting Lifestyle Profile II. Results: Forty-six (51.1%) of the eligible survivors responded to the invitation to participate in the study. The analysis was based on data from 45 survivors. The results show that the relationship between PTSS and health promotion behaviors was mediated by uncertainty. Discussion: Uncertainty is a suitable target for theory-based nursing interventions used to boost health promotion behaviors in young adult survivors of childhood cancer.

BackgroundFamilies living with chronic or long-term conditions such as chronic kidney disease (CKD), stages 3-5, face multiple challenges and respond to these challenges in various ways. Some families adapt well while others struggle, and family response to a condition is closely related to outcome. With families and professionals, we developed a novel condition-specific interactive health communication app to improve parents’ management ability—the online parent information and support (OPIS) program. OPIS consists of a comprehensive mix of clinical caregiving and psychosocial information and support. ObjectiveThe purpose of this study was to (1) assess feasibility of a future full-scale randomized controlled trial (RCT) of OPIS in terms of recruitment and retention, data collection procedures, and psychometric performance of the study measures in the target population, and (2) investigate trends in change in outcome measures in a small-scale RCT in parents of children with CKD stages 3-5. MethodsParents were recruited from a pediatric nephrology clinic and randomly assigned to one of two treatment groups: usual support for home-based clinical caregiving (control) or usual support plus password-protected access to OPIS for 20 weeks (intervention). Both groups completed study measures at study entry and exit. We assessed feasibility descriptively in terms of recruitment and retention rates overall; assessed recruitment, retention, and uptake of the intervention between groups; and compared family condition management, empowerment to deliver care, and fathers’ involvement between groups. ResultsWe recruited 55 parents of 39 children (42% of eligible families). Of those, about three-quarters of intervention group parents (19/26, 73%) and control group parents (22/29, 76%) were retained through completion of 20-week data collection. The overall retention rate was 41/55 (75%). The 41 parents completing the trial were asked to respond to the same 10 questionnaire scales at both baseline and 20 weeks later; 10 scores were missing at baseline and nine were missing at 20 weeks. Site user statistics provided evidence that all intervention group parents accessed OPIS. Analysis found that intervention group parents showed a greater improvement in perceived competence to manage their child’s condition compared to control group parents: adjusted mean Family Management Measure (FaMM) Condition Management Ability Scale intervention group 44.5 versus control group 41.9, difference 2.6, 95% CI -1.6 to 6.7. Differences between the groups in the FaMM Family Life Difficulty Scale (39.9 vs 36.3, difference 3.7, 95% CI -4.9 to 12.2) appeared to agree with a qualitative observation that OPIS helped parents achieve understanding and maintain awareness of the impact of their child’s condition. ConclusionsA full-scale RCT of the effectiveness of OPIS is feasible. OPIS has the potential to beneficially affect self-reported outcomes, including parents’ perceived competence to manage home-based clinical care for children with CKD stage 3-5. Our design and methodology can be transferred to the management of other childhood conditions. Trial RegistrationInternational Standard Randomized Controlled Trial Number (ISRCTN): 84283190; http://www.controlled-trials.com/ISRCTN84283190 (Archived by WebCite at http://www.webcitation.org/6TuPdrXTF).

This integrative literature review is focused on (1) the prevalence of bone mineral density (BMD) decrements in children treated for acute lymphoblastic leukemia (ALL), and when these decrements are observed; (2) the risk factors associated with the development of decreased BMD and resultant complications in children treated for ALL; (3) the role, if any, that corticosteroids play in decreasing BMD in children treated for ALL; (4) interventions that can potentially manage bone loss in people treated for ALL during childhood or adolescence. The results showed that people who have been diagnosed with ALL can have decrements in BMD. The etiology of BMD decrements can be attributed to multiple factors including genetic endowment, lifestyle behaviors, the leukemia disease process, and treatment exposures especially to corticosteroids and cranial radiotherapy. Male gender, age greater than 10 years, and physical inactivity are associated with BMD decrements in ALL survivors. The role of pediatric oncology nurses in the management of bone disease in children with cancer across the illness trajectory is discussed.

This integrative literature review focuses on (1) the spectrum of cardiovascular late effects; (2) the factors that can influence the development of cardiovascular late effects; and (3) the role of the pediatric oncology nurse in minimizing the risks of cardiovascular late effects and associated disabilities in childhood cancer survivorship. The results showed that survivors who have been treated with radiation therapy, especially when the field includes the heart or the hypothalamic-pituitary axis (HPA), and specific chemotherapies are at increased risk for developing particular cardiovascular risk factors and/or cardiovascular disease. Younger age at diagnosis, longer time since treatment, and family history of early heart disease can further heighten the risks. The role of pediatric oncology nurses in the promotion of cardiovascular health for children with cancer across the illness trajectory is discussed.

Although an assumption of consistency in intervention delivery is key to the conclusion that the findings are valid, attention to both interventionist adherence and competence has not become a standard in nursing intervention research.The purpose of this article is to describe the technology model of intervention fidelity as it applies to psychosocial interventions, and to propose its application in nursing intervention research as a way to support accurate conclusions about validity.The features and methods of the Technology Model of intervention fidelity were reviewed. The review included development of a manual, training and supervision of interventionists, measurement of intervention fidelity, and inclusion of intervention fidelity as an independent variable in the analysis.The Technology Model and the associated methodologies that have been used to monitor psychosocial intervention fidelity in psychiatry can be adapted and applied by nursing. Monitoring costs can be managed through use of a general system that can be applied across programmatic or related studies.Application of the Technology Model of intervention fidelity could advance the maturation of nursing intervention research and evidence-based clinical practice.

The purpose of the study was to describe relationships between uncertainty, anxiety, and symptoms of posttraumatic stress (PTS) in parents of children recently diagnosed with cancer. The study was guided by the Uncertainty in illness Theory. The setting was a children's hospital. Participants were 15 parents of 12 children recently diagnosed with cancer. Anxiety was measured by the State-Trait Anxiety Inventory. Uncertainty was measured by the Parent Perception of Uncertainty Scale. Symptoms of PTS were measured by the Reaction Index. Total scale scores were calculated and psychometrics estimated. Differences in uncertainty, anxiety, and symptoms of PTS by parent race were assessed using analysis of variance. The correlation matrix was estimated to assess relationships between variables. The level of uncertainty was lower than expected, but was significantly higher for black parents (p < .001). The level of anxiety was comparable to that for hospitalized persons with anxiety disorders. The level of symptoms of PTS was higher than reported for parents of childhood cancer survivors. The relationship between anxiety and symptoms of PTS was significant (r = .56, p < .02). Pediatric oncology nurses should offer parents interventions to relieve high levels of anxiety and symptoms of PTS; some parents could also benefit from interventions that target uncertainty.

Adolescent–young adult (AYA) childhood cancer survivors experience at least 2 types of chronic stress that can increase their risk for cardiovascular disease: the physiological stress of cancer and its treatment and the psychosocial stress inherent in the cancer experience. Their siblings can also experience ongoing cancer-related psychosocial stress. The composite biomarker allostatic load (AL) describes the cumulative impact of responses to chronic stress on interrelated organ systems and risk for stress-related diseases including cardiovascular disease. AL could be useful as a surrogate response indicator in research and care that aims to improve cardiovascular outcomes of childhood cancer. However, the measurement of AL has requirements to which AYA might not agree or adhere. This study aimed to (a) evaluate the feasibility of studying AL in AYA cancer populations and (b) briefly describe preliminary findings concerning psychological distress, cancer-related stress symptoms, health behavior and AL in AYA survivors and their siblings within the context of a small pilot study. The results support the feasibility of studying AL in AYA survivors and their siblings, and also suggest that further study of AL and risk for cardiovascular disease in both groups is indicated.

Background: There is a lack of online, evidence-based information and resources to support home-based care of childhood CKD stages 3-5. Methods. Qualitative interviews were undertaken with parents, patients and professionals to explore their views on content of the proposed online parent information and support (OPIS) web-application. Data were analysed using Framework Analysis, guided by the concept of Self-efficacy. Results: 32 parents, 26 patients and 12 professionals were interviewed. All groups wanted an application that explains, demonstrates, and enables parental clinical care-giving, with condition-specific, continously available, reliable, accessible material and a closed communication system to enable contact between families living with CKD. Professionals advocated a regularly updated application to empower parents to make informed health-care decisions. To address these requirements, key web-application components were defined as: (i) Clinical care-giving support (information on treatment regimens, video-learning tools, condition-specific cartoons/puzzles, and a question and answer area) and (ii) Psychosocial support for care-giving (social-networking, case studies, managing stress, and enhancing families' health-care experiences). Conclusions: Developing a web-application that meets parents' information and support needs will maximise its utility, thereby augmenting parents' self-efficacy for CKD caregiving, and optimising outcomes. Self-efficacy theory provides a schema for how parents' self-efficacy beliefs about management of their child's CKD could potentially be promoted by OPIS. © 2014 Swallow et al.; licensee BioMed Central Ltd.