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PURPOSE: In childhood cancer survivors (CCS), high physical activity (PA) and low sedentary time may reduce risks of late-effects. PA behaviors and screen time, and how they relate to moderate-to-vigorous PA (MVPA) in CCS, are largely unknown. We examined PA behaviors and screen time, and their cross-sectional associations with MVPA. METHODS: CCS from any cancer diagnosis (≥ l year post-treatment), aged 9-16 years at study, were eligible in the international Physical Activity in Childhood Cancer Survivors (PACCS) study. PA behaviors (school transport, intensity-effort in physical education ("PE intensity"), leisure-time PA) and screen time were assessed by self-report, and MVPA by accelerometers (ActiGraph GT3X-BT). Multivariable linear regressions were used to assess associations between PA behaviors and screen time with MVPA. RESULTS: We included 481 CCS (48% girls, mean age 12.2 years). Passive school transport (prevalence 42%) was associated with 10% lower MVPA/day (ß = 6.6 min, 95% CI 3.3-10.0), low PE intensity (prevalence 21%) with 16% lower MVPA/day (ß = 10.2 min, 95% CI 6.0-14.3), and low leisure-time PA (prevalence 34%) with 15% lower MVPA/day (ß = 9.4 min, 95% CI 1.0-17.7), compared to active school transport, high PE intensity and high leisure-time PA, respectively. High screen time was not associated with MVPA. CONCLUSION: Interventions aiming to increase PA behaviors rather than reducing screen time may be more efficient in promoting a healthy lifestyle in CCS through increased MVPA. Encouraging active transport, high PE intensity, and high leisure-time PA seems important in survivorship care. IMPLICATIONS FOR CANCER SURVIVORS: Young CCS may benefit from engaging in active transport, high PE intensity, and high leisure-time PA.
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BACKGROUND: Cancer-related fatigue is a common and distressing late effect of cancer that can persist for decades after treatment completion. Although negatively affecting survivors' quality of life, few, if any, efficacious interventions for persistent, or chronic, fatigue exist. AIMS: To inform future interventions, we explored how long-term, young adult cancer survivors (YACSs) with chronic fatigue live with, and manage their fatigue over time, including their experiences with nonpharmacological interventions (NPIs) for chronic fatigue. METHODS AND RESULTS: We conducted a qualitative focus group study with 15 YACSs (13 women) with chronic fatigue, on average 7.3 years post-diagnosis. The YACS were identified and recruited through a nationwide health survey of cancer survivors (the NOR-CAYACS study). Systematic content analysis was used to identify recurrent themes. Analysis revealed five themes: (1) manifestation of fatigue, detailing chronic fatigue experiences; (2) impact on daily life, highlighting the necessity to balance rest and activity, affecting relationships; (3) NPIs, where walks in nature were notably beneficial; (4) barriers to fatigue management, including energy deficits, treatment-related bodily changes, and self-care prioritization challenges; (5) facilitators to fatigue management, emphasizing the need for regular breaks, self-care practices, and the importance of fatigue management education. CONCLUSION: This study offers novel insights into the lived experiences of YACSs with chronic fatigue, a subject scarcely examined in prior research. Our findings highlight the significant impact of chronic fatigue and the individualized strategies YACSs use to cope. The research emphasizes the need for personalized interventions to support chronic fatigue management, marking a critical step forward in addressing this often-overlooked issue in survivorship care. Future research should focus on tailored approaches to improve YACSs' quality of life.
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Sobreviventes de Câncer , Grupos Focais , Neoplasias , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Sobreviventes de Câncer/psicologia , Feminino , Masculino , Adulto , Neoplasias/psicologia , Neoplasias/terapia , Neoplasias/complicações , Adulto Jovem , Fadiga/etiologia , Fadiga/terapia , Fadiga/psicologia , Síndrome de Fadiga Crônica/psicologia , Síndrome de Fadiga Crônica/terapia , Síndrome de Fadiga Crônica/etiologiaRESUMO
PURPOSE: Explore teachers', school nurses', cancer coordinators' and other local stakeholders' experiences providing education and support for young childhood cancer survivors in the years after treatment. METHODS: We conducted four focus groups and three individual telephone interviews with 15 teachers, nine nurses and three other stakeholders, using inductive thematic analysis inspired by Braun & Clark. Nvivo v12 was used for data-management. RESULTS: Three main themes were developed; "Perceived parent attitudes and facilitation", "The missing link - lack of communication and collaboration", and "Enabling mastery, inclusion and thriving". Parents were perceived to be the sole managers of providing cancer information and school-related follow-up needs. Teachers and other stakeholders experienced the nonexistence of information from specialist healthcare services and poor communication within the municipality. Teachers went to great lengths to meet survivors' pedagogical needs and facilitate peer interactions. Teachers voiced a need for more cancer and late effect knowledge, not being dependent solely on parents' for information. CONCLUSIONS: Teachers and other stakeholders have essential roles in the continuing school experience for survivors. A more regulated teamwork between the stakeholders in the municipalities and the specialist healthcare system could ensure tailored late effect information at school. Implementing formal support could enable a co-creation of a personalized follow up that could relieve the burden on survivors, parents and teachers.
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Sobreviventes de Câncer , Leucemia , Neoplasias , Humanos , Criança , Pesquisa Qualitativa , Exercício FísicoRESUMO
Although medical information is essential for all patients, information needs and information processing capacities vary between individual patients and over time and context, within patients. Therefore, it is often recommended to "tailor" medical information to individual patients during clinic visits. However, there is a lack of consensus on what "tailoring" in clinical interactions represents since the definitions provided in the literature thus far generally regard tailoring of written text, rather than in dialogue during face-to-face interactions. To provide clinicians with guidance on how to tailor information to individual patients and to allow researchers to assess the effectiveness thereof, clarity is urgently needed regarding what "tailoring" actually means and what it entails in practice. In this paper we outline the current challenges of applying the concept of "tailoring" to the clinical setting and present existing definitions. Importantly, we introduce a new working definition of the concept that encompasses essential informational and dialogic components. We believe this provisional definition promotes much-needed conceptual precision in how communication researchers and educators define and assess tailored information provision in clinical consultations.
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Comunicação , Encaminhamento e Consulta , HumanosRESUMO
During medical consultations, physicians need to share a substantial amount of information with their patients. How this information is framed can be crucial for patient understanding and outcomes, but little is known about the details of how physicians frame information in practice. Using an inductive microanalysis approach in the study of videotaped medical interactions, we aimed to identify the information frames (i.e., higher-level ways of organizing and structuring information to reach a particular purpose) and the information-framing devices (i.e., any dialogic mechanism used to present information in a particular way that shapes how the patient might perceive and interpret it) physicians use spontaneously and intuitively while sharing information with their patients. We identified 66 different information-framing devices acting within nine information frames conveying: (1) Do we agree that we share this knowledge?, (2) I don't like where I (or where you are) am going with this, (3) This may be tricky to understand, (4) You may need to think, (5) This is important, (6) This is not important, (7) This comes from me as a doctor, (8) This comes from me as a person, and (9) This is directed to you as a unique person. The kaleidoscope of information-framing devices described in this study reveals the near impossibility for neutrality and objectivity in the information-sharing practice of medical care. It also represents an inductively derived starting point for further research into aspects of physicians' information-sharing praxis.
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Médicos , Humanos , Gravação de VideoteipeRESUMO
The Publisher regrets that this article is an accidental duplication of an article that has already been published in
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OBJECTIVES: Physical activity (PA) may modify risks of late effects after cancer. We aimed to examine levels of PA and sedentary time (ST) in a large, international sample of adolescent childhood cancer survivors in relation to sociodemographic and cancer-related factors and compare levels of PA and ST to reference cohorts. METHODS: Survivors from any cancer diagnosis who had completed cancer treatment ≥1 year ago, aged 9 to 16 years, were eligible for the multicenter Physical Activity in Childhood Cancer Survivors study. PA and ST were measured by ActiGraph GT3X+ accelerometers. We performed linear regression analyses to assess factors associated with moderate-to-vigorous PA (MVPA) and ST, and compared marginal means of total PA, MVPA, and ST in 432 survivors to sex- and age-stratified references (2-year intervals) using immediate t-tests for aggregated data. RESULTS: Among survivors, 34% fulfilled the World Health Organization's PA recommendation of ≥60 min of daily MVPA on average and their ST was 8.7 hours per day. Being female, older, overweight, a survivor of central nervous system tumor, or having experienced relapse were associated with lower MVPA and/or higher ST. Generally, male survivors spent less time in MVPA compared with references, whereas female survivors had similar levels. Both male and female survivors had higher ST than references in nearly all age groups. CONCLUSIONS: The low PA and high ST in this large sample of adolescent childhood cancer survivors is worrisome. Combined, our results call for targeted interventions addressing both PA and ST in follow-up care after childhood cancer.
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Sobreviventes de Câncer , Neoplasias , Adolescente , Feminino , Masculino , Humanos , Sobreviventes , Progressão da Doença , Exercício Físico , Sobrepeso , Neoplasias/terapiaRESUMO
Objectives: Smoking is common in patients with cardiovascular disease. Despite strong recommendations for cessation and the existence of efficacious pharmacological and behavioral interventions, cessation rates remain low. Therefore, in this study, we explore perceived facilitators and barriers to smoking cessation in patients with atherosclerotic cardiovascular disease who have participated in a cessation intervention study. Methods: Participants (N = 10) from the intervention arm of a randomized controlled study with access to free cessation support and pharmacological aids completed a semi-structured, in-depth telephone interview after a 6-monthfollow-up between October 2021 and July 2022. The interviews were audio recorded, transcribed, and analyzed according to principles of thematic analysis. Results: The mean age was 65.7 (range: 55-79) years, and three of the 10 participants were women. Among the participants, five had quit smoking, three had relapsed, and two were persistent smokers. The themes identified encompassed barriers and facilitators to cessation, both including individual and contextual factors. Barriers included the upsides of smoking, difficult life situations, addiction to smoking, smoking in social circles, perceived lack of support and understanding from health professionals. Facilitators included intrinsic motivation, concerns about the health condition, financial implications, specific behavioral strategies, positive influence from the social environment, and helpful components of the cessation intervention. Conclusion: Smokers with cardiovascular disease who have attended a cessation intervention study report several facilitators weighted against barriers, interacting with the intention to cease smoking. The most important potentially modifiable factors of significance for cessation identified may be addressed through motivational interviews and focus groups with other smokers.
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INTRODUCTION: The use of proton therapy increases globally despite a lack of randomised controlled trials demonstrating its efficacy and safety. Proton therapy enables sparing of non-neoplastic tissue from radiation. This is principally beneficial and holds promise of reduced long-term side effects. However, the sparing of seemingly non-cancerous tissue is not necessarily positive for isocitrate dehydrogenase (IDH)-mutated diffuse gliomas grade 2-3, which have a diffuse growth pattern. With their relatively good prognosis, yet incurable nature, therapy needs to be delicately balanced to achieve a maximal survival benefit combined with an optimised quality of life. METHODS AND ANALYSIS: PRO-GLIO (PROton versus photon therapy in IDH-mutated diffuse grade 2 and 3 GLIOmas) is an open-label, multicentre, randomised phase III non-inferiority study. 224 patients aged 18-65 years with IDH-mutated diffuse gliomas grade 2-3 from Norway and Sweden will be randomised 1:1 to radiotherapy delivered with protons (experimental arm) or photons (standard arm). First intervention-free survival at 2 years is the primary endpoint. Key secondary endpoints are fatigue and cognitive impairment, both at 2 years. Additional secondary outcomes include several survival measures, health-related quality of life parameters and health economy endpoints. ETHICS AND DISSEMINATION: To implement proton therapy as part of standard of care for patients with IDH-mutated diffuse gliomas grade 2-3, it should be deemed safe. With its randomised controlled design testing proton versus photon therapy, PRO-GLIO will provide important information for this patient population concerning safety, cognition, fatigue and other quality of life parameters. As proton therapy is considerably more costly than its photon counterpart, cost-effectiveness will also be evaluated. PRO-GLIO is approved by ethical committees in Norway (Regional Committee for Medical & Health Research Ethics) and Sweden (The Swedish Ethical Review Authority) and patient inclusion has commenced. Trial results will be published in international peer-reviewed journals, relevant conferences, national and international meetings and expert forums. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov Registry (NCT05190172).
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Glioma , Prótons , Humanos , Cognição , Glioma/genética , Glioma/radioterapia , Noruega , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , SuéciaRESUMO
OBJECTIVE: To identify patient-related characteristics considered to affect patient involvement in shared decision making (SDM) about treatment. METHODS: We conducted a scoping review of qualitative studies. We searched for literature across seven databases until March 2022, and included qualitative studies that focused on associations between patient-related characteristics and SDM about treatment in adults. We analyzed studies using an inductive thematic approach. RESULTS: The search yielded 5948 articles, of which 70 were included. We identified many different patient-related characteristics, which we grouped into four categories related to: (1) the individual who is facing the decision, (2) the decision, (3) the relationship between the patient and the clinician and others involved in the decision, and (4) the healthcare context. CONCLUSIONS: Studies report a variety of patient-related characteristics that may affect patient involvement in SDM. Amongst others, patients may need to feel informed, to understand their role in SDM, and be able to communicate. Involvement may be challenging with characteristics such as perceived time pressure, poor patient-clinician relationships, emotional distress, and severe illness. PRACTICE IMPLICATIONS: In order to truly involve patients in SDM, we might need to focus on characteristics such as patient emotions and relationship building, besides information provision and values clarification.
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Tomada de Decisão Compartilhada , Angústia Psicológica , Adulto , Humanos , Participação do Paciente , Tomada de Decisões , EmoçõesRESUMO
Neuroticism is a basic personality trait concerning negative feelings under stressful conditions. Our purpose was to examine the rate of high neuroticism and factors associated with high neuroticism in long-term (≥ 5 years) survivors of childhood, adolescent, and young adult cancer (CAYACSs). Norwegian CAYACSs aged 0-39 years when diagnosed and treated between 1985 and 2009 for cancer in childhood/adolescence (0-18 years), or as young adults (19-39 years) and alive in 2015 were mailed a questionnaire. Data from 1629 CAYACSs (481 children/adolescents and 1148 young adults) were analyzed. High neuroticism was found in 44% of survivors of childhood/adolescent cancers versus 34% in survivors of young adult cancer (p < 0.001). The rate of high neuroticism in female CAYACSs was 40% and in males 30% (p < 0.001). The corresponding difference between male survivor group was non-significant. In multivariable analysis, young age at survey, more adverse effects, poor self-rated health, female sex, chronic fatigue, and increased depression remained significantly associated with high neuroticism. Cancer treatment, comorbidity, and lifestyle were significant in bivariate analyses. Cancer at earlier age could increase the risk of high neuroticism among adult survivors. Screening for neuroticism could identify CAYACSs at risk for experiencing multiple health concerns and needing special follow-up attention.
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Neoplasias , Sobreviventes , Adolescente , Criança , Emoções , Feminino , Humanos , Masculino , Neoplasias/epidemiologia , Neoplasias/terapia , Neuroticismo , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Poor health literacy may hamper health management and long-term outcomes in breast cancer survivorship. Knowledge of factors associated with poor health literacy is needed to identify survivors in need of additional support and to improve the quality of health care, but is currently scant. Here, we explore health literacy and associated factors in a nationwide sample of long-term survivors of breast cancer. MATERIAL AND METHODS: All survivors aged 20-65 years when diagnosed with stage I-III breast cancer in 2011 or 2012 were identified through the Norwegian Cancer Registry, and invited to participate in the Survivorship, Work and Sexual Health (SWEET) study. Health literacy was measured using The European Health Literacy Survey Questionnaire-12 (HLS-EU-Q12) and analyzed as a continuous and categorical variable. Associations between health literacy and socioeconomic, physical, and mental health variables, including the most common late effects after cancer treatment, were explored in uni- and multivariable linear regression models. RESULTS: The final sample consisted of 1355 survivors (48%) with a mean age of 60 years at survey (SD 8.7). Eight years had passed since diagnosis (SD.0.7), and the majority of survivors had high socioeconomic status. Advanced judgment calls concerning treatment and health risks were reported to be the most difficult for survivors to handle. Mean health literacy sum score was 36.2 (range 12-48, SD 5.4). Thirty-nine percent had intermediate, while 19.3% reported marginal or inadequate health literacy. Education, income, age at diagnosis, the personality trait neuroticism, and fear of cancer recurrence were significantly associated with health literacy in the multivariate model, explaining 12% of the variance in health literacy scores. CONCLUSION: Low levels of health literacy were prevalent in this population-based sample of long-term survivors of breast cancer, despite high socioeconomic status. Communicating and interpreting risks seem to be especially challenging. Attention to health literacy at a societal and individual level is necessary in order to provide survivorship care of high quality.
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Neoplasias da Mama , Letramento em Saúde , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Feminino , Humanos , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/psicologia , Qualidade de Vida/psicologia , Sobreviventes/psicologia , SobrevivênciaRESUMO
BACKGROUND: Knowledge of medical history and late effects is central in modern survivorship management, especially for long-term childhood, adolescent and young adult cancer survivors' (CAYACS) with long life expectancy rates and high risks of late effects. Identifying information and knowledge gaps is, therefore, important. As part of the population-based NOR-CAYACS study, we investigated the following: (1) written information received about their disease and treatment, and any information about late effects; (2) satisfaction with this information and associated factors; (3) knowledge about late effects and factors associated with low knowledge of specific late effects. MATERIAL AND METHODS: A questionnaire-based survey (Nor-CAYACS) was mailed to 5361 CAYACS (childhood cancers, breast and colorectal cancer, acute lymphatic leukemia, non-Hodgkin lymphoma and malignant melanoma) identified by the Cancer Registry of Norway (CRN). Of these, 2018 answered questions about disease and late effects information and knowledge. Exposure variables were extracted from the questionnaire and CRN. Unfortunately, it was not possible to stratify by treatment in the analyses. We ran descriptive statistics for comparisons and logistic regressions to identify factors associated with outcomes of interest. RESULTS: Overall, 50% to 60% of survivors reported not having received written information about their disease and treatment, or any information about late effects. There was a large variation in reported knowledge across 17 late effects. Lower levels of knowledge were associated with male sex, lower education and poorer health literacy in multivariable regression models. CONCLUSIONS: Knowledge of cancer history and risks of late effects is essential for effective self-management, yet significant information and knowledge gaps were reported in this population-based sample of long-term CAYACS. Systematic approaches to making (up-to-date) information available to long-term survivors are needed to ensure that information does not get lost in medical and life transitions.
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BACKGROUND: Survivors of childhood cancer represent a growing population with a long life expectancy but high risks of treatment-induced morbidity and premature mortality. Regular physical activity (PA) may improve their long-term health; however, high-quality empirical knowledge is sparse. OBJECTIVE: The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) study comprises 4 work packages (WPs) aiming for the objective determination of PA and self-reported health behavior, fatigue, and quality of life (WP 1); physical fitness determination (WP 2); the evaluation of barriers to and facilitators of PA (WP 1 and 3); and the feasibility testing of an intervention to increase PA and physical fitness (WP 4). METHODS: The PACCS study will use a mixed methods design, combining patient-reported outcome measures and objective clinical and physiological assessments with qualitative data gathering methods. A total of 500 survivors of childhood cancer aged 9 to 18 years with ≥1 year after treatment completion will be recruited in follow-up care clinics in Norway, Denmark, Finland, Germany, and Switzerland. All participants will participate in WP 1, of which approximately 150, 40, and 30 will be recruited to WP 2, WP3, and WP 4, respectively. The reference material for WP 1 is available from existing studies, whereas WP 2 will recruit healthy controls. PA levels will be measured using ActiGraph accelerometers and self-reports. Validated questionnaires will be used to assess health behaviors, fatigue, and quality of life. Physical fitness will be measured by a cardiopulmonary exercise test, isometric muscle strength tests, and muscle power and endurance tests. Limiting factors will be identified via neurological, pulmonary, and cardiac evaluations and the assessment of body composition and muscle size. Semistructured, qualitative interviews, analyzed using systematic text condensation, will identify the perceived barriers to and facilitators of PA for survivors of childhood cancer. In WP 4, we will evaluate the feasibility of a 6-month personalized PA intervention with the involvement of local structures. RESULTS: Ethical approvals have been secured at all participating sites (Norwegian Regional Committee for Medical Research Ethics [2016/953 and 2018/739]; the Oslo University Hospital Data Protection Officer; equivalent institutions in Finland, Denmark [file H-19032270], Germany, and Switzerland [Ethics Committee of Northwestern and Central Switzerland, project ID: 2019-00410]). Data collection for WP 1 to 3 is complete. This will be completed by July 2022 for WP 4. Several publications are already in preparation, and 2 have been published. CONCLUSIONS: The PACCS study will generate high-quality knowledge that will contribute to the development of an evidence-based PA intervention for young survivors of childhood cancer to improve their long-term care and health. We will identify physiological, psychological, and social barriers to PA that can be targeted in interventions with immediate benefits for young survivors of childhood cancer in need of rehabilitation. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/35838.
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Purpose: Efficient physician communication with adolescent cancer survivors (ACS) during follow-up consultations is important to enable survivors to take responsibility for their health. The present study had two aims: to develop a communication tool to enhance structured consultations and improve clinician communication in follow-up consultations, and to pilot-test the tool in physicians' consultations with ACS. Methods: Clinicians and communication experts collaborated closely to develop the 7 Memory Hooks (7MH) communication tool and a corresponding coding scheme for scoring communication behavior in consultations. Thirty-seven follow-up consultations between ACS and physicians were video-recorded (22 before intervention and 15 after intervention). The intervention consisted of a didactic lecture, a group workshop, and individual coaching to provide feedback to physicians on the communication skills observed in the pre-intervention videos. We then compared physicians' communication behavior both before and after intervention. Results: Fourteen physicians participated in the 7MH training. The mean total score on the 7MH scheme was significantly higher post-intervention compared with pre-intervention (p = 0.001). Six behaviors changed significantly after the intervention. At a group level, physicians were more likely to be alone with the adolescent (p = 0.004) and to prepare the patient for transition to adult heath care (p = 0.040). They asked more often about the patients' expectations (p = 0.007) and resources ((p = 0.019). And they acknowledged patients' concerns more often (p = 0.016) but talked significantly less about physical activity (p = 0.012). Conclusion: A physician communication tool, designed bottom-up and developed in collaboration with the clinic, shows promising effects on physicians' communication behavior at follow-up consultations with ACS.
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Sobreviventes de Câncer , Neoplasias , Adolescente , Adulto , Comunicação , Seguimentos , Humanos , Neoplasias/terapia , Relações Médico-Paciente , Encaminhamento e ConsultaRESUMO
AIMS: The purpose of this secondary analysis was to explore how young cancer survivors and their parents experience and manage treatment-related late effects in daily life post-treatment. DESIGN: A phenomenological-hermeneutic explorative study. METHODS: Using purposive sampling, we included 15 childhood cancer survivors (aged 11-18 years) and their parents who participated in semi-structured interviews from September 2019 through May 2020. We analysed the interviews paired using a thematic approach focused on meaning. RESULTS: The central theme, 'Negotiation daily life', emerged as well as three interrelated sub-themes, that is 'A changed everyday life', 'Physical activity as a tool' and 'Friends as a tool'. The childhood cancer survivors and their parents experienced, understood and interpreted the late effects differently. The difference between the survivors' perceptions and those of their parents in managing treatment-related late effects in everyday life resulted in a continuous negotiation process between the parties. Parents highlighted the negative impact of late effects on their child's daily life in relation to physical activity, school and socialization while the survivors wished to leave the cancer experience behind and 'move on' with their friends. As a result, most of the survivors developed strategies to manage their social activities while their parents felt that the survivors neglected the late effects. CONCLUSION: The ongoing negotiation process between the childhood cancer survivors and their parents show the complexity of the new family dynamics on returning to everyday life post-treatment. For clinical nurses, that means that there should be focus on family dynamics and how the childhood cancer survivors and parents, respectively, manage the childhood cancer survivors' late effects. IMPACT: Healthcare providers should distinguish between the needs of the survivors and those of their parents as they transition from treatment to everyday life, and especially in the management of late effects caused by the treatment.
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Sobreviventes de Câncer , Neoplasias , Adolescente , Criança , Humanos , Neoplasias/terapia , Pais , Pesquisa Qualitativa , SobreviventesRESUMO
People's ability to critically assess cancer-related information is essential from a preventional and therapeutic, as well as a general democratic perspective. Such cancer literacy is not just about acquiring factual knowledge. It also involves the ability to analyze how the information is contextualized-how cancer is framed. Previous research concerning the framing of cancer in public discourse is voluminous and penetrating but also fragmented and inaccessible to non-experts. In this study, we have developed an integrated and applicable tool for analyzing cancer discourse by systematically classifying distinctive ways of framing of the concept of cancer. Building on previous research and an inductive framing analysis of a broad range of public cancer discourse, systematically selected from British and Norwegian newspapers, we have characterized nine cancer frames: the biomedical, the environmental, the epidemiological, the personal, the sociopolitical, the economic, the antagonistic, the alternative, and the symbolic frame. This framing scheme may be applied to analyze cancer-related discourse across a plurality of themes and contexts. We also show how different frames combine to produce more complex messages, thereby revealing underlying patterns, strategies, and conflicts in cancer communication. In conclusion, this analytical tool enables critical reading of cancer-related information and may be especially useful in educational initiatives to advance health communication and public understanding of cancer.
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Comunicação em Saúde , Neoplasias , HumanosRESUMO
BACKGROUND: Providing diagnostic and treatment information to patients is a core clinical skill, but evidence for the effectiveness of different information-giving strategies is inconsistent. This systematic review aimed to investigate the reported effects of empirically tested communication strategies for providing information on patient-related outcomes: information recall and (health-related) behaviors. METHODS: The databases MEDLINE, Embase, PsycINFO (Ovid), Cochrane Central Register of Controlled Trials, and relevant bibliographies were systematically searched from the inception to April 24, 2020, without restrictions, for articles testing information-giving strategies for physicians (PROSPERO ID: CRD42019115791). Pairs of independent reviewers identified randomized controlled studies with a low risk of selection bias as from the Cochrane risk of bias 2 tool. Main outcomes were grouped into patient information recall and behavioral outcomes (e.g., alcohol consumption, weight loss, participation in screening). Due to high heterogeneity in the data on effects of interventions, these outcomes were descriptively reported, together with studies', interventions', and information-giving strategies' characteristics. PRISMA guidelines were followed. RESULTS: Seventeen of 9423 articles were included. Eight studies, reporting 10 interventions, assessed patient information recall: mostly conducted in experimental settings and testing a single information-giving strategy. Four of the ten interventions reported significant increase in recall. Nine studies assessed behavioral outcomes, mostly in real-life clinical settings and testing multiple information-giving strategies simultaneously. The heterogeneity in this group of studies was high. Eight of the nine interventions reported a significant positive effect on objectively and subjectively measured patients' behavioral outcomes. DISCUSSION: Using specific framing strategies for achieving specific communication goals when providing information to patients appears to have positive effects on information recall and patient health-related behaviors. The heterogeneity observed in this group of studies testifies the need for a more consistent methodological and conceptual agenda when testing medical information-giving strategies. TRIAL REGISTRATION: PROSPERO registration number: CRD42019115791.
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Comportamentos Relacionados com a Saúde , Médicos , Consumo de Bebidas Alcoólicas , Comunicação , HumanosRESUMO
BACKGROUND: Healthy lifestyle and rehabilitation may mitigate late effects after cancer treatment, but knowledge about lifestyle and rehabilitation information needs among long-term young adult cancer survivors (YACSs) (≥ 5 years from diagnosis) is limited. The present study aimed to examine such information needs among long-term YACSs, and identify characteristics of those with needs. MATERIAL AND METHODS: The Cancer Registry of Norway identified long-term YACSs diagnosed with breast cancer, colorectal cancer, non-Hodgkin lymphoma, leukemia, or malignant melanoma at the age of 19-39 years, between 1985 and 2009. Survivors were mailed a questionnaire, in which respondents reported their information needs on physical activity, diet, and rehabilitation services 5-30 years post-diagnosis. Descriptive statistics and logistic regression analyses were used to examine the prevalence of information needs and associated factors. RESULTS: Of 1488 respondents (a response rate of 42%), 947 were included. Median age at diagnosis was 35 years (range 19-39) and median observation time since diagnosis was 14 years (range 5-30). In total, 41% reported information needs for information about physical activity, 45% about diet, and 47% about rehabilitation services. Information needs were associated with higher treatment intensity, increasing number of late effects, and an unhealthy lifestyle. CONCLUSION: A large proportion of long-term YACSs report information needs regarding lifestyle and/or rehabilitation more than a decade beyond treatment. Assessments of such information needs should become a part of long-term care of these cancer survivors.