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

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

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

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

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

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

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

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

Applying Community-Engaged Intervention Mapping to Preparing Nurse Scientists.

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

Illness uncertainty, coping, and quality of life among patients with prostate cancer.

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.

Influence of pediatric cancer-related financial burden on parent distress and other stress-related symptoms.

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.

Fathers' psychological responses to pediatric cancer-induced financial distress.

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.

Illness Uncertainty and Posttraumatic Stress in Young Adults With Congenital Heart Disease.

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.

Family-Centered Care From the Perspective of Parents of Children Cared for in a Pediatric Intensive Care Unit: An Integrative Review.

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.

A training program for nurse scientists to promote intervention translation.

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.

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

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

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

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

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

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

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

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

A Conceptual Model of Financial Toxicity in Pediatric Oncology.

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.

Parent perceptions of the impact of the Paediatric Intensive Care environment on delivery of family-centred care.

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.

A systematic scoping review of the recent literature (∼2011-2017) about the costs of illness to parents of children diagnosed with cancer.

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.

Predictors of healthy behaviour in long-term survivors of childhood cancer.

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 (beta = -0.37, p = 0.007), post-traumatic stress symptoms (beta = -0.10, p = -0.44), interactions with primary care providers (beta = 0.33, p = 0.01) and a history of special educational assistance (beta = -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.