Objective:Fear of Cancer Recurrence (FCR), Health Anxiety (HA), worry, and uncertainty in illness are psychological concerns commonly faced by cancer patients. In survivorship research, these similar, yet different constructs are frequently used interchangeably and multiple instruments are used in to measure them. The lack of clear and consistent conceptualization and measurement can lead to diverse or contradictory interpretations. The purpose of this scoping review was to review, compare, and analyze the current conceptualization and measurements used for (...) FCR, HA, worry, and uncertainty in the breast cancer survivorship literature to improve research and practice.Inclusion Criteria:We considered quantitative, qualitative, and mixed methods studies of breast cancer survivors that examined FCR, HA, worry, or uncertainty in illness as a main topic and included a definition or assessment of the constructs.Methods and Analysis:The six-staged framework was used to guide the scoping review process. Searches of PubMed, CINAHL, and PsycINFO databases were conducted. The principle-based qualitative analysis and simultaneous content analysis procedures were employed to synthesize and map the findings.Findings:After duplicate removal, the search revealed 3,299 articles, of which 82 studies met the inclusion criteria. Several critical attributes overlapped the four constructs, for example, all were triggered by internal somatic and external cues. However, several unique attributes were found (e.g., a sense of loss of security in the body is observed only among survivors experiencing FCR). Overall, findings showed that FCR and uncertainty in illness are more likely to be triggered by cancer-specific factors, while worry and HA have more trait-like in terms of characteristics, theoretical features, and correlates. We found that the measures used to assess each construct were on par with their intended constructs. Eighteen approaches were used to measure FCR, 15 for HA, 8 for worry, and 4 for uncertainty.Conclusion:While consensus on the conceptualization and measurement of the four constructs has not yet been reached, this scoping review identifies key similarities and differences to aid in their selection and measurement. Considering the observed overlap between the four studied constructs, further research delineating the unique attributes for each construct is warranted. (shrink)

While cancer survivors commonly experience fear and anxiety, a substantial minority experience an enduring and debilitating fear that their cancer will return; a condition commonly referred to as fear of cancer recurrence. Despite recent advances in this area, little is known about FCR among people from Indigenous or other ethnic and racial minority populations. Given the high prevalence and poor outcomes of cancer among people from these populations, a robust understanding of FCR (...) among people from these groups is critical. The current review identified and aggregated existing literature on FCR amongst adult cancer survivors from Indigenous and minority populations. The protocol of this review was registered with PROSPERO in July 2020. A systematic search of bibliographic databases was conducted for relevant articles published from 1997 to November 2019. Data from eligible articles were extracted and appraised for quality by two independent reviewers. Nineteen articles from four countries met the inclusion criteria, including 14 quantitative, 4 qualitative and 1 mixed-methods study. Only one article reported on an Indigenous population. Few studies reported on FCR prevalence or severity. While the variation in tools used to measure FCR hindered a robust estimate of severity, results suggested some differences in FCR severity between minority and dominant populations, although these may have been due to study metholodological differences. Few factors were reported as being associated with FCR in minorities across multiple studies. The qualitative synthesis found five themes associated with the lived experience of FCR: variations in the lived experience of FCR; spirituality and worldview impacting on FCR; the importance of staying positive; complexities around support; and increasing cancer knowledge. The findings of this review highlight differences in FCR across cultures and contexts, which reinforces the need for culturally-specific approaches to this condition. The dearth of research in this area is of concern given the significant burden of cancer in these populations. A deeper understanding of this condition among Indigenous and minority populations is critical to developing and delivering appropriate and effective psychosocial care for cancer survivors from these groups. Systematic Review Registration: identifier [CRD42020161655]. (shrink)

ObjectiveTo examine the relations between social support, illness uncertainty, and fear of cancer recurrence.MethodsUsing data from a convenience sample of 231 breast cancer survivors in China to perform structural equation modeling with bootstrapping estimation. Participants were recruited from a general hospital in Shenyang, China. Participants completed the Perceived Social Support Scale, Mishel Uncertainty in Illness Scale, and Fear of Cancer Recurrence Inventory- Shorter Form.ResultsThe majority of breast cancer survivors have FCR. FCR was (...) significantly negatively associated with social support, and was significantly positively associated with IU. Moreover, IU was found to mediate the relationship between social support and FCR.ConclusionThe findings support the final model. Good social support can directly mitigate FCR, while illness uncertainty can play a mediation role between social support and FCR. Further studies should be conducted to explore effective interventions for social support and IU to ultimately mitigate FCR in cancer survivors. (shrink)

Background: A significant concern for patients treated for cancer is fear of cancer recurrence. Although a common experience, some patients report high levels of FCR that are difficult to manage and result in over vigilant checking and high use of health services. There has been speculation about the relationship of FCR with gender with mixed reports from several systematic reviews.Aims: To determine the association of FCR with gender in previous reported studies and investigate the strength of (...) this relationship with various moderators including year of publication, type of cancer and measurement attributes of self-reported FCR instruments.Methods: A systematic review was conducted with searches of the literature from the MEDLINE, PubMed, Embase, and PsycINFO databases following PRISMA guidelines. All the included papers were divided into two groups, namely: “pure” that comprise only of patients with cancer types that both men and women can contract and “mixed” that report on patients with a variety of cancer types. The association between gender and FCR level was assessed by meta-analysis. A meta-regression was performed to investigate the moderating effects of factors including: the year of publication, cancer type, mean age of the sample and the length of the FCR scale measurement. This review was registered with PROSPERO, ID: CRD42020184812.Results: Finally, 29 studies were included. The N size of pooled participants was 33,339. The meta-analysis showed females to have an overall higher level of FCR than males. The meta-regression of moderating or control variables found little, if any, systematic variation in effect-sizes.Conclusion: This systematic review has clarified a potentially confused pattern of previous results in understanding the relationship between gender and FCR. Women report higher levels of FCR than men and this feature is one that clinicians and researchers can factor into their practice and future studies. The effect size is moderate, hence there is ample variation in FCR level, independent of gender, that requires further investigation. (shrink)

BackgroundFear of cancer recurrence is common amongst cancer survivors. There is rapidly growing research interest in FCR but a need to prioritize research to address the most pressing clinical issues and reduce duplication and fragmentation of effort. This study aimed to establish international consensus among clinical and academic FCR experts regarding priorities for FCR research.MethodsMembers of the International Psycho-oncology Society Fear of Cancer Recurrence Special Interest Group were invited to participate in an online Delphi (...) study. Research domains identified in Round 1 were presented and discussed at a focus group to consolidate the domains and items prior to presentation in further survey rounds aimed at gaining consensus on research priorities of international significance.ResultsThirty four research items were identified in Round 1 and 33 of the items were consolidated into six overarching themes through a focus group discussion with FCR experts. The 33 research items were presented in subsequent rounds of the delphi technique. Twenty one participants contributed to delphi round 1, 16 in round 2, and 25 and 29 participants for subsequent delphi rounds. Consensus was reached for 27 items in round 3.1. A further four research items were identified by panelists and included in round 3.2. After round 3.2, 35 individual research items were ratified by the panelists. Given the high levels of consensus and stability between rounds, no further rounds were conducted. Overall intervention research was considered the most important focus for FCR research. Panelists identified models of care that facilitate greater access to FCR treatment and evaluation of the effectiveness of FCR interventions in real world settings as the two research items of highest priority. Defining the mechanisms of action and active components across FCR/P interventions was the third highest priority identified.ConclusionThe findings of this study outline a research agenda for international FCR research. Intervention research to identify models of care that increase access to treatment are based on a flexible approach based on symptom severity and can be delivered within routine clinical care were identified as research areas to prioritize. Greater understanding of the active components and mechanisms of action of existing FCR interventions will facilitate increased tailoring of interventions to meet patient need. (shrink)

Background: Fear of cancer recurrence or progression is a common challenge experienced by people living with and beyond cancer and is frequently endorsed as the highest unmet psychosocial need amongst survivors. This has prompted many cancer organizations to develop self-help resources for survivors to better manage these fears through psychoeducation, but little is known about whether they help reduce FCR/P.Method: We recruited 62 women with ovarian cancer. Women reported on their medical history and demographic (...) characteristics and completed the Fear of Progression Questionnaire-Short Form. They then read a booklet on FCR specifically created for Ovarian Cancer Australia by two of the authors. One week after reading the booklet, 50/62 women completed the FoP-Q-SF and answered questions about their satisfaction with the booklet.Results: More than half of the women scored in the clinical range for FCR/P at baseline. Of the completers, 93% said that they would recommend the booklet to other women. Satisfaction with the booklet was relatively high and more than two-thirds of women rated it as moderately helpful or better. However, FCR/P did not change significantly over the week following reading the booklet [t = 1.71, p = 0.09]. There was also no difference in change in FCR/P between women in the clinical vs. non-clinical range on the FoP-Q. Women high in FCR/P rated the booklet as less helpful in managing FCR/P, but overall satisfaction with the booklet was not associated with degree of FCR/P.Conclusions: These results suggest that a simple online FCR booklet is acceptable to women with ovarian cancer and they are satisfied with the booklet, but, it was insufficient to change in FCR/P levels. These results suggest that such resources are valued by women with ovarian cancer, but more potent interventions are necessary to reduce FCR in this population. (shrink)

BackgroundFear of cancer recurrence is an important cause of suffering for cancer survivors, and both empirical evidence and theoretical models suggest that prognostic uncertainty plays a causal role in its development. However, the relationship between prognostic uncertainty and FCR is incompletely understood.ObjectiveTo explore the relationship between prognostic uncertainty and FCR among patients with ovarian cancer.DesignA qualitative study was conducted utilizing individual in-depth interviews with a convenience sample of patients with epithelial ovarian cancer who had completed (...) first-line treatment with surgery and/or chemotherapy. Semi-structured interviews explored participants’ understanding of their prognosis; experiences, preferences, and attitudes regarding prognostic information; and strategies for coping with prognostic uncertainty. Inductive qualitative analysis and line-by-line software-assisted coding of interview transcripts was conducted to identify key themes and generate theoretical insights on the relationship between prognostic uncertainty and FCR.ResultsThe study sample consisted of 21 participants, nearly all of whom reported experiencing significant FCR, which they traced to an awareness of the possibility of a bad outcome. Some participants valued and pursued prognostic information as a means of coping with this awareness, suggesting that prognostic uncertainty causes FCR. However, most participants acknowledged fundamental limits to both the certainty and value of prognostic information, and engaged in various strategies aimed not at reducing but constructing and maintaining prognostic uncertainty as a means of sustaining hope in the possibility of a good outcome. Participants’ comments suggested that prognostic uncertainty, fear, and hope are connected by complex, bi-directional causal pathways mediated by processes that allow patients to cope with, construct, and maintain their uncertainty. A provisional dual-process theoretical model was developed to capture these pathways.ConclusionAmong patients with OC, prognostic uncertainty is both a cause and an effect of FCR—a fear-inducing stimulus and a hope-sustaining response constructed and maintained through various strategies. More work is needed to elucidate the relationships between prognostic uncertainty, fear, and hope, to validate and refine our theoretical model, and to develop interventions to help patients with OC and other serious illnesses to achieve an optimal balance between these states. (shrink)

Fear of cancer is mostly related to cancer recurrence, metastasis, additional cancer, and diagnostic tests. Its legacy as a lethal disease has raised fear of approaching death. Currently, cancer’s total suffering and the worsening phenomena have raised fear, especially among female patients. Family caregivers (FCGs) who are responsible for the day-to-day cancer care at home need to help the patients deal with this fear frequently. Due to the limited care competencies, (...) they need supportive care from healthcare professionals in cancer fear management. This study aims to assess how types of demanded healthcare information affect the FCG’s role in reducing the fear of female cancer patients. The mindsponge theory was used in conceptual development and interpretation. Bayesian Mindsponge Framework (BMF) analytics were used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of healthcare information, FCGs with higher demand on cancer-specific information and information on cancer physical needs were more likely to need support in reducing the fear of female cancer patients. Meanwhile, FCGs with a higher demand for information on support services were less likely to need support to reduce cancer patients’ fear. Other types of healthcare information have ambiguous effects on the need for support in reducing cancer-induced fear. This study reveals that the demanded cancer-specific information, e.g., cancer’s prognosis or likely outcome and information on cancer physical needs, need to be met in priority to assist FCG’s role in cancer fear management. (shrink)

There is limited knowledge about cancer patients' experiences of uncertainty while waiting for genome sequencing results, and whether prolonged uncertainty contributes to psychological factors in this context. To investigate uncertainty in patients with a cancer of likely hereditary origin while waiting for genome sequencing results, we collected questionnaire and interview data at baseline, and at three and 12 months follow up. Participants had negative attitudes towards uncertainty at baseline, and low levels of uncertainty at three and 12 months. (...) Uncertainty about genome sequencing did not change significantly over time [t = 0.660, p = 0.510]. Greater perceived susceptibility for cancer [r = 0.14, p < 0.01], fear of cancer recurrence [r = 0.19, p < 0.01], perceived importance of genome sequencing [r = 0.24, p < 0.01], intention to change behavior if a gene variant indicating risk is found [r = 0.29, p < 0.01], perceived ability to cope with results [r = 0.36, p < 0.01], and satisfaction with decision to have genome sequencing [r = 0.52, p < 0.01] were significantly correlated with negative attitudes towards uncertainty at baseline. Multiple primary cancer diagnoses [B = −2.364 [−4.238, −0.491], p = 0.014], lower perceived ability to cope with results [B = −0.1.881 [−3.403, −0.359], p = 0.016] at baseline, greater anxiety about genome sequencing [B = 0.347 [0.148, 0.546], p = 0.0012] at 3 months, and greater perceived uncertainty about genome sequencing [B = 0.494 [0.267, 0.721] p = 0.000] at 3 months significantly predicted greater perceived uncertainty about genome sequencing at 12 months. Greater perceived uncertainty about genome sequencing at 3 months significantly predicted greater anxiety about genome sequencing at 12 months [B = 0.291 [0.072, 0.509], p = 0.009]. Semi-structured interviews revealed that while participants were motivated to pursue genome sequencing as a strategy to reduce their illness and risk uncertainty, genome sequencing generated additional practical, scientific and personal uncertainties. Some uncertainties were consistently discussed over the 12 months, while others emerged over time. Similarly, some uncertainty coping strategies were consistent over time, while others emerged while patients waited for their genome sequencing results. This study demonstrates the complexity of uncertainty generated by genome sequencing for cancer patients and provides further support for the inter-relationship between uncertainty and anxiety. Helping patients manage their uncertainty may ameliorate psychological morbidity. (shrink)

Previous work has shown that concerns of breast cancer patients after finishing radiotherapy are responsive to conversations with radiographers during the treatment period. This study seeks to further understand radiographer and patient experiences, determine shared priorities for improvement in clinical interaction and develop communication guidelines and training to help radiographers support patients.Methods: Using the principles of Experience-Based Co-Design, semi-structured interviews were held with N = 4 patients and N = 4 radiographers, followed by feedback events to validate findings. Patients (...) and radiographers exchanged experiences in a joint co-design session, agreed with shared priorities and generated ideas for further support. A survey was conducted for process evaluation. To scale up findings, UK-wide representatives from patient networks and radiographers and managerial staff provided consultative input utilizing an iterative, adaptive procedure.Results: Radiographers expressed a need for support with “difficult conversations,” especially those on Fear of Cancer Recurrence, and their appropriate management. Important pointers for reassuring communication were identified, including: being treated like a person, knowing what to expect, and space to ask questions. The co-design process was rated positively by both staff and patients. Thematic collation of findings and mapping these on literature evidence resulted in the “KEW” communication guidelines for radiographers: Know, Encourage, Warmth. National stakeholder consultations validated and helped fine-tune the training model. The resulting training package, included: trigger videos, a simulated patient scenario and interactive handouts on fears of cancer recurrence and the patient pathway.Conclusions: The co-design process captured good practice to help standardize quality in empathic communication in the radiotherapy service. The resulting KEW: Know, Encourage, Warmth guidelines, and training package are user-centered as well as evidence-based. Supplementing single-site co-design with national consultative feedback allows for the development of interventions that are relevant to the clinical practice, even in detail, and helps to generate appropriate buy-in for roll out on a wider scale after evaluation.Trial Registration:www.ClinicalTrials.gov ID: NCT03468881. (shrink)

BackgroundFidelity of implementation reflects whether an intervention was implemented in clinical practice according to the originally developed manual and is a key aspect in understanding intervention effectiveness. To illustrate this process of developing a fidelity measure, this study uses the Mini-AFTERc, a brief psychological intervention aimed at managing breast cancer patients’ fear of cancer recurrence, as an example.ObjectivesTo illustrate the development of an FOI measure through applying this process to the Mini-AFTERc intervention, by including the design (...) of a scoring system and rating criteria; content validating the FOI measure using thematic framework analysis as a qualitative approach; testing consistency of the FOI measure using interrater reliability.MethodsThe FOI measure was developed, its scoring system modified and the rating criteria defined. Thematic framework analysis was conducted to content validate the FOI measure using nine intervention discussions between four specialist cancer nurses and four breast cancer patients, and one simulated breast cancer patient. Intraclass-correlation was conducted to assess interrater reliability.ResultsThe qualitative findings suggested that the Mini-AFTERc FOI measure has content validity as it was able to measure all five components of the Mini-AFTERc intervention. The interrater reliability suggested a moderate to excellent degree of reliability among three raters, rICC = 0.84, 95% CI [0.51, 0.96].ConclusionThe study has illustrated the steps that an FOI measure can be developed through a systematic approach applied to the Mini-AFTERc intervention. The FOI measure was found to have content validity and was consistently applied, independently, by three researchers familiar with the Mini-AFTERc intervention. Future studies should determine whether similar levels of interrater reliability can be obtained by distributing written and/or video instructions to researchers who are unfamiliar with the FOI measure, using a larger sample. Employing developed and validated FOI measures such as the one presented for the Mini-AFTERc would facilitate implementation of interventions in the FCR field in clinical practice as intended.Clinical Trial Registrationwww.ClinicalTrials.gov, identifier: NCT03763825. (shrink)

Re-evaluating dominant cultural narratives around dying and death is central to new critiques of individualism and human exceptionalism. As conceptual tools for theorizing the end of the individual proliferate, the affective dimensions of this project are often overlooked, especially as they pertain to individual subjects. In contrast, a significant number of iconic queer and feminist thinkers have suffered breast cancer and written memoirs representing the subjective experience of confronting mortality. This article identifies the affective orientations towards one’s own mortality (...) as missing from queer and feminist thinking on embodiment in the Anthropocene. As a remedy, the article reads several iconic feminist breast cancer memoirs – Sontag, Lorde, Sedgwick, Jain and Boyer – for their complex representations of affect, in particular fear, in relation to dying and death. Using the affect theory of Silvan Tomkins, this analysis contributes to critiques of cancer culture in medical humanities and of mortality and embodiment in feminist environmental humanities. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Prepping for the Day You Hope Never Arrives:Facing RecurrenceTerra TrevorMy 14–year–old son was eight years past diagnosis of a brain tumor. Gone were the pristine sick days when his white hooded sweatshirt stayed spotlessly clean for weeks at a time. Each time he left a muddy footprint on the kitchen floor I rejoiced; it felt so good to have a healthy kid again. However, my son was a survivor (...) of an anaplastic ependymoma, grade IV, brain tumor, and although I wanted to be out of the woods, I knew we were not. I’d climbed out of the space where medical problems were fi led in my mind, yet I kept the door open because statics showed that the type of brain tumor he had, frequently recurred.Still, I was determined to keep our lives as ordinary as possible. But for a brain tumor family this meant staying connected to sources of support. Parent programs, patient and sibling support groups [End Page 27] and camps, and we remained connected to hospital resources. Most of all we needed to have fun as a family, and we attended the cancer survivor picnics and parties our hospital hosted, where the doctors served as volunteers, grilling hamburgers and dishing up ice cream for the guest of honor patients.My husband and I felt confident that as long as we worked as a team with our doctors and stayed connected to resources offered, we would find a way to meet any challenges that might surface.In the end ultimately what saved us was this mosaic of support provided to us over the years from a multitude of good people and organizations offering help when we needed it most. And I had the opportunity to learn to accept help, which it turns out, is far harder than offering to help.Shortly after my son Jay celebrated his 8th year as a brain tumor survivor, I watched him open the medicine cabinet and reach for the bottle of Advil, for the second time in a row that day. “Do you have a headache again?” I asked. He shrugged his shoulders, then hiccupped hard, and ducked his head in the toilet and threw up. Tears welled in his eyes. I sank into the deep, silent panic that made me calm.Our primary care physician called in an authorization for an MRI. Jay hid his fear behind a mask of quiet strength. It was ten days before his fifteenth birthday.While we waited for the MRI appointment, that week Jay was elected student of the month, and he got a lead part in the school play. My idyll of family hood continued until the MRI confirmed my worst fear—the tumor was back, and this time its fingers spread into the brainstem.We had to decide on a plan of treatment. Surgery was scheduled. When Jay was admitted to the hospital and I requested that he be placed in the pediatric ward, an environment he was familiar with, they agreed. Although Jay was a teenager, the recurrence caused him to revert emotionally back to a younger age. It was as if he was seven–years–old again, reliving his first brain tumor experience, and he kept his childhood security item—a small teddy bear with him, tucked under the hospital covers, like he had with the first diagnosis.Luck held. With surgery most of the tumor was resected and symptoms disappeared. Three days later, on Thanksgiving, he was feeling well enough to be excited about the Thanksgiving dinner our hospital provided us. A table and chairs were brought in, along with a feast of good food. The nurses gave Jay lavish attention, they laughed at the corny jokes he told, and made us feel like special company.Within a week Jay was out of the hospital, recovering well. But what to do about the remaining brain tumor slivers that were inoperable? He had already received his lifetime dose of whole brain radiation, and chemotherapy available offered little hope of curing a recurrent tumor. But there was a small chance that stereotactic radiation might stall tumor growth. We set up a consultation.We had... (shrink)

The purpose of this article is to provide a critical examination of two aspects of culture and biomedicine that have helped to shape the meaning and practice of genetic testing for breast cancer. These are: the cultural construction of fear of breast cancer, which has been fuelled in part by the predominance of a ‘risk’ paradigm in contemporary biomedicine. The increasing elaboration and delineation of risk factors and risk numbers are in part intended to help women to (...) contend with their fear of breast cancer. However, because there is no known cure or foolproof prevention for breast cancer, risk designations bring with them recommendations for vigilant surveillance strategies and screening guidelines. We argue that these in effect exacerbate women’s fears of breast cancer itself. The volatile combination of discourses of fear, risk and surveillance have significant ethical and social consequences for women’s lives and well-being. Genetic testing decisions are made within this context; if nurses understand this context they can play an important role in helping women to cope with the anxiety and fear of breast cancer risk. (shrink)

The purpose of this article is to provide a critical examination of two aspects of culture and biomedicine that have helped to shape the meaning and practice of genetic testing for breast cancer. These are: (1) the cultural construction of fear of breast cancer, which has been fuelled in part by (2) the predominance of a ‘risk’ paradigm in contemporary biomedicine. The increasing elaboration and delineation of risk factors and risk numbers are in part intended to help (...) women to contend with their fear of breast cancer. However, because there is no known cure or foolproof prevention for breast cancer, risk designations bring with them recommendations for vigilant surveillance strategies and screening guidelines. We argue that these in effect exacerbate women’s fears of breast cancer itself. The volatile combination of discourses of fear, risk and surveillance have significant ethical and social consequences for women’s lives and well-being. Genetic testing decisions are made within this context; if nurses understand this context they can play an important role in helping women to cope with the anxiety and fear of breast cancer risk. (shrink)

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of (...) the presence or absence of persistent or recurrent disease; a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call “liminality”. We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient’s life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments. (shrink)

The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

Somatic mutations arising in human skin cancers are heterogeneously distributed across the genome, meaning that certain genomic regions (e.g., heterochromatin or transcription factor binding sites) have much higher mutation densities than others. Regional variations in mutation rates are typically not a consequence of selection, as the vast majority of somatic mutations in skin cancers are passenger mutations that do not promote cell growth or transformation. Instead, variations in DNA repair activity, due to chromatin organization and transcription factor binding, have been (...) proposed to be a primary driver of mutational heterogeneity in melanoma. However, as discussed in this review here, recent studies indicate that chromatin organization and transcription factor binding also significantly modulate the rate at which UV lesions form in DNA. The authors propose that local variations in lesion susceptibility may be an important driver of mutational hotspots in melanoma and other skin cancers, particularly at binding sites for ETS transcription factors. (shrink)

Most basic research on cancer concerns genetic changes in benign and malignant tumors. Yet evidence indicates that the majority of the mutations in tumors occur in the preneoplastic field stage of their development. That early stage is represented by grossly invisible, broad regions of “field cancerization” which have not, heretofore, been operationally analyzed in cell culture. Conditions are described for quantitating preneoplasia by increased saturation density followed by progression to transformation. These parameters are driven by Darwinian selection of spontaneously (...) occurring, cumulative mutations, in accordance with recent genomic analyses of human cancer, just as it is in the evolution of species. The cell culture model will allow correlation of the preneoplastic increases in saturation density with genetic changes, and development of methods for demarcating fields during surgery so that they can be excised along with the tumor, thereby reducing the possibility of recurrence at the site. (shrink)

The aim of this study was to investigate the level of posttraumatic growth of cancer patients post-treatment in the context of selected sociodemographic characteristics, clinical markers, and psychological variables (positive and negative emotions, anxiety and depressive symptoms, gratitude, forgiveness, hope, importance of the spiritual aspect of life and the practice of religious faith). The study sample consisted of 110 patients post-treatment aged 22-79 years and with an average time since the completion of the last treatment ranging from 5 to (...) 396 months. The Posttraumatic Growth Inventory, the Positive and Negative Affect Schedule, screening methods to measure anxiety (General Anxiety Dis- order-7) and depression (Patient Health Questionnaire-9), and questionnaires to measure dispositional gratitude (Gratitude Questionnaire GQ-6), dispositional hope (Adult Dispositional Hope Scale), and forgiveness (Heartland Forgiveness Scale) were used to measure the psychological variables. There were no differences in the level of posttraumatic growth in terms of sociodemographic characteristics and clinical markers. Partner status, employment status, presence of recurrence, and comorbidities did not differentiate its level either. The rate of posttraumatic growth was related to the experience of positive emotions, gratitude, the importance of the spiritual aspect of life, and the practice of religious faith. In the regression model that explained 21.90% of the variance in posttraumatic growth, only the level of positive emotions was a significant predictor. The results of the present research point suggest that the level of posttraumatic growth is associated with several areas of emotional experience and cognitive adjustment of cancer patients post-treatment. (shrink)

The coronavirus disease 2019 pandemic has strongly affected oncology patients. Many screening and treatment programs have been postponed or canceled, and such patients also experience fear of increased risk of exposure to the virus. In many cases, locus of control, coping flexibility, and perception of a supportive environment, specifically family resilience, can allow for positive emotional outcomes for individuals managing complex health conditions like cancer. This study aims to determine if family resilience, coping flexibility, and locus of control (...) can mitigate the negative affect caused by the pandemic and enhance positive affect in breast cancer patients. One hundred and fifty-four female patients with breast cancer completed the Walsh’s Family Resilience Questionnaire, the Perceived Ability to Cope With Trauma Scale, the Positive-Negative Affect Schedule, and the Mini Locus of Control Scale. Family resilience and internality of locus of control contribute significantly to positive affective responses. Family resilience is responsible for mitigating the negative affect perceived during the pandemic and is enhanced by external locus of control. Evidence suggests that clinical psychologists should develop and propose programs to support oncology patients’ family resilience, coping flexibility, and internal locus of control, allowing for decreased stress and improved adaptability for effectively managing cancer treatment during the pandemic. (shrink)

Language holds great importance within clinical encounters, particularly when healthcare professionals are dealing with life-threatening diseases, such as cancer. This study is an attempt to explore the perceptions of women under treatment for breast cancer in Karachi, Pakistan, with respect to language employed by healthcare professionals for the disclosure of disease, and the impact that language used has on patients. Using exploratory qualitative methods consisting of 24 in-depth interviews with patients and one interview with a healthcare professional, this (...) study reveals various nuances of language at play. We find that in Pakistani society, there is reluctance to use the word “cancer” during the disclosure of disease by healthcare professionals, family members and patients alike due to fear of imminent death and to retain hope in patients. Instead, colloquial language, such as “rasoli [mass]” and “this illness” is used to refer to the disease. The disease is disclosed with a deliberate attempt to avoid the use of the word “cancer”, and often done in a series of steps rather than the diagnosis being spelt out bluntly, with the former practice generally preferred than the latter. Despite this manner of disclosure, patients remain aware that they are suffering from a disease. This has important implications for clinicians in Pakistan, where there are no standardized practices for breaking bad news, and where clinicians have to tailor their communication styles according to the type of patient, thus the onus rests on physicians to impart information in an empathetic manner to patients suffering from serious diseases. (shrink)

Does R. G. Collingwood’s theory that concepts in philosophy are organized as “scales of forms” apply to his own work on the nature of history? Or is there some inconsistency between Collingwood’s work as a philosopher of history and as a theorist of philosophical method? This article surveys existing views among Collingwood specialists concerning the applicability of Collingwood’s “scale of forms” thesis to his own philosophy of history – especially the accounts of Leon Goldstein and Lionel Rubinoff – and outlines (...) the obvious objections to such an application. These objections however are found to be answerable. It is shown that Collingwood did indeed think that the scale of forms thesis should apply to the philosophy of history, and even that he identified the “highest” form in history as a kind of scientific research or inquiry. But it is not claimed that Collingwood identified the “lower” forms explicitly. An account is provided of the three distinct forms that can be identified in Collingwood’s philosophy of history, and of the “critical points” by which lower forms are negated and incorporated by higher forms. But it is also explained that these forms are not neatly coterminous with the stages in Western philosophical thinking about history as Collingwood narrates them in The Idea of History. (shrink)

Quentin Skinner has enduringly insisted that a past text cannot be ‘understood’ without the reader knowing something about its historical and linguistic context. But since the 1970s he has been attacked on this central point of all his work by authors maintaining that the text itself is the fundamental guide to the author’s intention, and that a separate study of the context cannot tell the historian anything that the text itself could not. Mark Bevir has spent much of the last (...) 20 years repeating a similar counter-argument. Although ‘study the linguistic context’ might be a useful heuristic maxim, Bevir says, it does not express a necessary or sufficient condition for understanding. But Skinner is right, and one of the figures he has consistently identified as a formative inspiration, R. G. Collingwood, has already (in his work of the 1930s) shown why. What Collingwood calls his ‘logic of question and answer’ explains why the historian cannot answer his characteristic ‘intention’ question about past texts without knowing the context of problems to which authors think they are offering solutions. The study of context is neither ‘prior’ (as Bevir incorrectly supposes) nor ‘separate’ (as Skinner inaccurately says), but it is, as Skinner maintains, nevertheless impossible to grasp an author’s intention without it. This ‘logic of question and answer’ also explains why, in history, dismissing the study of context is in fact a pre-judgement of evidence yet unseen. (shrink)

Rapid Ethical Assessment is an approach used to design context tailored consent process for voluntary participation of participants in research including human subjects. There is, however, limited evidence on the design of ethical assessment in studies targeting cancer patients in Ethiopia. REA was conducted to explore factors that influence the informed consent process among female cancer patients recruited for longitudinal research from Addis Ababa Population-based Cancer Registry. Qualitative study employing rapid ethnographic approach was conducted from May–July, 2017, (...) at the Tikur Anbessa Specialized Referral Hospital. In-depth and key informants’ interviews were conducted among purposively selected 16 participants. Regular de-briefings among the study team helped to identify emerging themes and ensure saturation. Interviews and debriefings were tape recorded in Amharic, and transcribed and translated to English. Coding of the transcripts was facilitated by use of NVivo software. Thematic analysis was employed to respond to the initial questions and interpret findings. Perceived barriers to voluntary study participation included lack of reporting back study results of previous studies, the decision making status of women, hopelessness or fatigue in the patients, shyness of the women, data collectors approach to the patient, and patient’s time constraints. Most of the patients preferred oral over written consent and face-to-face interview over telephone interview. Provision of detail information about the study, using short and understandable tool, competent, compassionate and respectful enumerators of the same gender were suggested to assure participation. Due to the perceived severity, the use of the term “cancer” was associated with fear and anxiety. Alternatively, uses of phrases like “breast or cervical illness/disease” were suggested during patient interviews. Voluntary participation is not straight forward but affected by different factors. Using competent, compassionate and respectful enumerators, short and precise questioning tools to limit the time of the interview could improve voluntary participation. Moreover, careful consideration of the patients and families concept of the disease such as wording and information has to be taken into account. This assessment helped in improving the consent process of the ongoing project on breast and cervical cancer patients. (shrink)

ABSTRACTR. G. Collingwood's New Leviathan presents an account of two ‘dialectical’ political processes that are ongoing in any body politic. Existing scholarship has already covered the first: a dialectic between a ‘social’ and a ‘non-social’ element, which Collingwood identifies in Hobbes. This essay elucidates a second: a dialectic between Liberals and Conservatives, which regulates the ‘percolation’ of liberty and the rate of recruitment into what Collingwood calls ‘the ruling class’. The details of this second dialectic are to be found not (...) in Hobbes, but in the work of Vilfredo Pareto and Gaetano Mosca, yet Collingwood's connections to these fathers of ‘classical elite theory’ have not previously been discussed. (shrink)

In 2014, Lord Saatchi launched his ultimately unsuccessful Medical Innovation Bill in the UK. Its laudable aim was to free doctors from the shackles that prevented them from providing responsible innovative treatment. Lord Saatchi’s principal contention was that current law was the unsurmountable barrier that prevented clinicians from delivering innovative treatments to cancer patients when conventional options had failed. This was because doctors feared that they might be sued or tried and convicted of gross negligence manslaughter if they deviated (...) from standard practice. Concerns about fear of the law and potential negative effects on medical practice are not new. Fear of litigation has been suggested as the reason for doctors practising “defensive medicine,” by opting for treatments regarded as “grievance-resistant,” rather than clinically indicated, for example, by ordering diagnostic tests or performing certain procedures, which are not strictly medically necessary. Whilst this claim is plausible and apparently accepted by the courts, there is limited empirical evidence in support of it so far as practitioners in the UK are concerned. In this paper, we report on our empirical research which provides a snapshot of medical opinion to begin to rectify this gap. We ran focus groups of different medical specialties, asking what these medical practitioners thought the barriers to medical innovation to be. We found that fear of the law was not the principal barrier to be lowered, and that the answer was far more multifaceted. (shrink)

Houellebecq’s critical reading of Huxley’s Brave New World in his novel Atomised takes Canetti’s novel Auto da Fe as its template. Houellebecq takes from Canetti the structuring contrast of antithetical brothers and shares his diagnosis of the crisis of Western individualism. Both writers identify the sickness at the heart of Western civilization that presages its coming end as the egotism of the monadic individual, enclosed in a private world of fears and desires. The role of the crowd in Canetti’s novel (...) as the Other of the fallen world of self-interest is taken in Houellebecq by the posthuman vision of social unity beyond division realized through cloning. (shrink)