The concept of moral distress comes from nursing ethics, and was initially defined as ‘…when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action’. There is a large body of literature associated with moral distress, yet multiple definitions now exist, significantly limiting its usefulness. We undertook a systematic review of the argument-based bioethics literature on this topic as the basis for a critical appraisal, identifying 55 papers for analysis. (...) We found that moral distress is most frequently framed around individual experiences of distress in relation to local practices and constraints, and understood in terms of power relations and workplace hierarchies. This understanding is directly derived from, and often still seen as specific to, nursing. Frequently the perspective of the morally distressed individual is privileged. Understandings of moral distress have evolved towards an ‘occupational health approach’, with the assumption that moral distress should be measured and prevented. Counter-perspectives were identified, highlighting conceptual problems. Based on our review, we propose a redefinition of moral distress: ‘Ethical unease or disquiet resulting from a situation where a clinician believes they have contributed to avoidable patient or community harm through their involvement in an action, inaction or decision that conflicts with their own values’. This definition is specific enough for research use, anchored in clinicians’ professional responsibilities and concerns about harms to patients, framed relationally rather than hierarchically, and amenable to multiple perspectives on any given morally distressing situation. (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)

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)

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)

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)

BackgroundBody image is a subjective concept encompassing a person’s views and emotions about their body. Head and neck cancer diagnosis and treatment affects several psychosocial concepts including body image. Large numbers of HNC patients are diagnosed each year in India but there are no suitable measures in regional languages to assess their body image. This study assessed the psychometric properties of the Body Image Scale, a measure suitable for clinical and research use in HNC populations, translated into Tamil, Telugu and (...) Hindi and compared body image distress between language groups.MethodsTranslated versions of BIS were completed by HNC patients recruited from three cancer centers across India one time only. Psychometric evaluation was conducted including factor analysis using principal component analysis and internal consistency reliability using Cronbach’s alpha. Patients completed the EORTC Quality of Life Questionnaire C-30 and EORTC QLQ HN-35 measures to enable exploration of convergent and discriminant validity. ANOVA was used to calculate difference in mean values for body image.ResultsOur sample included 621 HNC patients. Factor analysis revealed a one-factor solution and Cronbach’s alpha coefficients ranged between 0.891 and 0.969 indicating good reliability. Hypothesized correlations between similar and different constructs were as expected, supporting construct validity. On the BIS, we found a statistically significant difference between means of Tamil, Telugu, and Hindi groups, with higher body image scores in Telugu and Hindi groups indicating more symptoms/body image distress, when compared to Tamil population.ConclusionThe reliability and validity of the three translated Indian versions of the BIS were maintained, providing a method for assessing body image of HNC population worldwide speaking Tamil, Telugu, and Hindi across the illness trajectory. (shrink)