It's time to address fear of cancer recurrence in family caregivers: usability study of an virtual version of the Family Caregiver—Fear Of Recurrence Therapy (FC-FORT)

BackgroundFamily caregivers of cancer survivors experience equal or greater levels of fear of cancer recurrence (FCR) than survivors themselves. Some interventions have demonstrated their ability to reduce FCR among cancer survivors and dyads (patient and caregivers). However, to date, no validated intervention exists to focus solely on family caregiver's FCR.ObjectivesThis study aimed to (1) adapt the evidence-based in-person Fear Of Recurrence Therapy (FORT) for family caregivers (referred here in as FC-FORT) and to a virtual delivery format and (2) test its usability when offered virtually.MethodsThe adaptation of FC-FORT was overseen by an advisory board and guided by the Information Systems Research Framework. Following this adaptation, female family caregivers and therapists were recruited for the usability study. Participants took part in 7 weekly virtual group therapy sessions, a semi-structured exit interview and completed session feedback questionnaires. Therapists were offered a virtual training and weekly supervision. Fidelity of treatment administration was assessed each session. Quantitative data were analyzed using descriptive statistics. Exit interviews were transcribed verbatim using NVivo Transcription and coded using conventional content analysis. Results were presented back to the advisory board to further refine FC-FORT.ResultsThe advisory board (n = 16) met virtually on 7 occasions to adapt FC-FORT (i.e., patient manuals, virtual format) and discuss recruitment strategies. Minor (e.g., revised text, adapted materials to virtual format) and major adaptations (e.g., added and rearranged sessions) were made to FC-FORT and subsequently approved by the advisory board. Four family caregivers and three therapists took part in the first round of the usability testing. Six family caregivers and the same three therapists took part in the second round. Overall, participants were very satisfied with FC-FORT's usability. Qualitative analysis identified 4 key themes: usability of FC-FORT, satisfaction and engagement with content, group cohesion, and impact of FC-FORT. All participants indicated that they would recommend FC-FORT to others as is.ConclusionsUsing a multidisciplinary advisory board, our team successfully adapted FC-FORT and tested its usability using videoconferencing. Results from this study indicate that the efficacy and acceptability of FC-FORT are now ready to be tested in a larger pilot study

Metabolic networking in Brunfelsia calycina petals after flower opening

Brunfelsia calycina flowers change colour from purple to white due to anthocyanin degradation, parallel to an increase in fragrance and petal size. Here it was tested whether the production of the fragrant benzenoids is dependent on induction of the shikimate pathway, or if they are formed from the anthocyanin degradation products. An extensive characterization of the events taking place in Brunfelsia flowers is presented. Anthocyanin characterization was performed using ultraperfomance liquid chromatography–quadrupole time of flight–tandem mass specrometry (UPLC-QTOF-MS/MS). Volatiles emitted were identified by headspace solid phase microextraction–gas chromatography–mass spectrometry (HS-SPME-GC-MS). Accumulated proteins were identified by 2D gel electrophoresis. Transcription profiles were characterized by cross-species hybridization of Brunfelsia cDNAs to potato cDNA microarrays. Identification of accumulated metabolites was performed by UPLC-QTOF-MS non-targeted metabolite analysis. The results include characterization of the nine main anthocyanins in Brunfelsia flowers. In addition, 146 up-regulated genes, 19 volatiles, seven proteins, and 17 metabolites that increased during anthocyanin degradation were identified. A multilevel analysis suggests induction of the shikimate pathway. This pathway is the most probable source of the phenolic acids, which in turn are precursors of both the benzenoid and lignin production pathways. The knowledge obtained is valuable for future studies on degradation of anthocyanins, formation of volatiles, and the network of secondary metabolism in Brunfelsia and related species

Mindfulness-based cognitive therapy for young adults with cancer: A report of benefits and challenges from the perspective of participants

Introduction: Cancer diagnosis and treatment frequently involves physical and psychological symptoms, including anxiety, depression, fatigue, and sleep disturbances. The young adult population with cancer face unique struggles including poignancy in relation to self-concept, identity formation, independence, role development, loss of independence, and time away from school and peers. Mindfulness-based interventions are increasingly being evaluated for individuals with a cancer diagnosis. Mindfulness-Based Cognitive Therapy (MBCT) combines Mindfulness-Based Stress Reduction with aspects of cognitive behavioural therapy. This paper aims to briefly describe MBCT and its benefits and challenges in the young adult population with cancer. Method: An analysis of themes was conducted of post-intervention semi-structured interviews that were conducted with a subsample of 14 participants to gain more detailed information regarding their perception. Findings: Participants reported positive transformations including in how they cope. Conclusions: Although a small sample size limits its generalizability, this study provides further evidence that MBCT can be successful in treating psychological symptoms in young adults with cancer

The desire for hastened death in individuals with advanced cancer: A longitudinal qualitative study

Research is needed on the desire for hastened death (DHD) in the context of advanced cancer in order to address the clinical, ethical, and legal questions that it raises. The goal of the present qualitative study was to understand the experience of the DHD as expressed by individuals with advanced cancer, and to understand how it evolves over time. Participants were 27 ambulatory patients aged 45-82 years with advanced lung or gastrointestinal cancer. Participants were recruited through theoretical sampling from outpatient clinics at a large cancer center in Toronto Canada, and were asked about the DHD in serial, open-ended interviews until the point of death. A total of 54 interviews were analyzed based on the grounded theory method. The experience of the DHD in the context of advanced cancer was found to be subsumed under three distinct categories: i) DHD as a hypothetical exit plan; ii) DHD as an expression of despair; and iii) DHD as a manifestation of letting go. Each category had unique temporal and qualitative characteristics. The identification of these categories may be important to inform future research on the DHD, the criteria for clinical intervention in individuals who express this desire, and the public debate about physician-assisted suicide and euthanasia for individuals with advanced disease.Canada Desire for hastened death Advanced cancer Oncology Depression Suicide

Impact of medical assistance in dying (MAiD) on family caregivers

This article has been accepted for publication in BMJ Supportive & Palliative Care, 2019 following peer review, and the publisher's PDF can be accessed online at doi: 10.1136/bmjspcare-2018-001686Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one's quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families

Death talk and relief of death-related distress in patients with advanced cancer

Objectives: The circumstances of advanced cancer heighten the need for affected individuals to communicate mortality-related concerns, although there may be obstacles to such communication. Managing Cancer and Living Meaningfully(CALM) is a supportive-expressive therapy designed to address such barriers and to facilitate communication of mortality-related concerns in patients and caregivers facing advanced disease. This study explores death-related distress in patients with advanced cancer and the perceived influence of CALM therapy on overcoming barriers to communication of this distress. Methods: Semistructured interviews were conducted with a subset of patients with advanced cancer (n=17) participating in a CALM phase III trial at a large urban regional cancer centre. Interviews were transcribed, and qualitative data were analysed using thematic analysis. Results: Death-related distress was experienced in terms of three key themes: diffuse and overwhelming fear, fear of uncertainty and fear of suffering. The perceived barriers to communicating such distress were as follows: reluctance of loved ones to discuss mortality-related issues and the participants´ own reluctance to discuss death-related concerns to protect their loved ones or themselves from distress. CALM therapists were perceived to facilitate discussions on dying and death in sessions and to support patients´ communication of death-related distress with healthcare providers and loved ones. Conclusions: Patients with advanced cancer perceive barriers to effective communication of death distress to be related to their own reluctance, as well as reluctance of their loved ones to address such fears. CALM therapy may help patients with advanced cancer to overcome obstacles to communication and to alleviate death-related distress

Lost and stranded: the experience of younger adults with advanced cancer

Purpose: There has been increased awareness recently of the unique medical and psychosocial needs of adolescents and young adults (AYAs) with cancer. However, the existing AYA literature is mainly focused on curative disease or survivorship rather than on advanced disease. Using qualitative methodology, we sought to understand the experience of younger adults with advanced cancer. Methods: Participants were interviewed using open-ended, discovery-oriented interviews. Data was analyzed using thematic analysis. In total, ten English-speaking advanced cancer patients who were being treated at a comprehensive cancer center in Canada, were interviewed. Participants were between the ages of 18 and 35, and seven of them were female. Results: The diagnosis of cancer was universally experienced as isolating and unexpected, with serious illness regarded as a problem of older individuals. The core challenge of living in the face of dying was felt to be constantly present yet typically unarticulated. Meaning-making tended to be constructed around future-oriented goals rather than upon the life that had been lived. Individuals felt forcefully removed from the stream of life, with a perceived interruption in the developmental tasks of establishing adult identity, becoming autonomous, and forming new relationships. All cited a need for young adult-specific services, yet none could describe specific services that would be beneficial. Many expressed reluctance to engage in individual psychotherapeutic treatment. Conclusions: Advanced cancer in younger adults was perceived by them as isolating and as interfering with age-appropriate developmental tasks. Creative and flexible psychosocial support programs are needed to engage this population with limited expected survival

The meaning of self-reported death anxiety in advanced cancer

Death anxiety is important but understudied in palliative care. New self-report measurements have been developed, but their interpretation and clinical utility may not be evident.This study was funded by a research grant from the Canadian Institutes of Health Research (CIHR #MOP 106473). This research was also supported in part by The Princess Margaret Cancer Foundation (PMCF) Hertz Centre Fund, The PMCF Kirsh Family Fund, and by the Ontario Ministry of Health and Long Term Care (OMOHLTC). The views expressed do not necessarily reflect those of the OMOHLTC. Dr. Rodin is also supported by the University of Toronto/University Health Network Harold and Shirley Lederman Chair in Psychosocial Oncology and Palliative Care. The funders had no role in the final design, analysis and writing of this study