Four Butterflies: End of Life Stories of Transition and Transformation

In this article, the author discusses her experiences as an Artist In Residence in the Department of Palliative Care and Rehabilitation Medicine at the University of Texas M. D. Anderson Cancer Center. Emphasis is placed on the ways in which end of life images and narratives often unfold in the fragile yet powerful space where conceptions of aesthetics and spirituality intersect with critical issues in the medical humanities. Drawing on four vivid case studies, the author examines the ways in which end of life narratives shed valuable light on conceptions of the subtlety of human embodiment; issues of violation, sorrow, and forgiveness; the mystical dimensions of traditional cultural beliefs; and the capacity for perceiving the natural world as a living symbol of grace. In so doing, she explores how the themes of transition and transformation become invested with meaningful existential and symbolic dimensions in artworks that give voice and presence to some of the most vulnerable, and often invisible, members of our societyﾗpeople at the end of life

Challenges and support needs of parents and children when a parent is at end of life: A systematic review

Background: Preparing children for the death of a parent is challenging. Parents are often uncertain if and how to communicate and support their children. Many parents feel it is protecting their children by not telling them about the prognosis. Children less prepared for parental death from a terminal illness are more susceptive to later adversities. To facilitate coping and moderate for such adversities, there is a need to gain insight and understand the experience and challenges confronted by families. Aim: This review synthesised evidence on the experiences of parents and children when a parent is at end of life to discern their challenges, support needs and factors that facilitated good practice. Design: Mixed-methods systematic review. Data sources: Four electronic databases (CINAHL, PubMed, PsycINFO and Ovid MEDLINE) using MeSH terms and word searches in October 2018. Studies were not limited by year of publication, language or country. Grey literature searches were also completed on Google Scholar and OpenGrey. Results: In all, 7829 records were identified; 27 qualitative and 0 quantitative studies met the inclusion criteria. Eight descriptive themes were identified, further categorised into two broad themes: (1) barriers and facilitators in sharing the news that a parent is dying and (2) strategies to manage the changing situation. Conclusion: Lack of understanding in relation to the parent’s prognosis, denial and feeling ill-equipped were suggested as barriers for parents to share the news with their children. Engagement with social networks, including extended family relatives and peers, and maintaining routines such as attending school were suggested supportive by parents and children. Findings are limited primarily to White, middle-class two-parent families. A number of areas for future research are identified.</p

Bereavement, grief and consolation: emotional-affective geographies of loss during COVID-19

COVID-19 has resulted in a new global geographies of death ranging from cellular to global scales. These geographies are uneven, reflecting existing inequalities and failures of governance. In addition to death and bereavement, the pandemic has generated varied forms of loss and consolation, negative and positive affective atmospheres, whereby emotions are mobilised and politicised. Understanding these emotional-affective topographies, including ‘emotional-viral-loads’, is vital to wellbeing, resilience and unfolding policy interventions locally and globally

Self-related consequences of death fear and death denial

This study explores self-related outcomes (e.g., esteem, self-concept clarity, existential well-being) as a function of the interaction between self-reported levels of death fear and death denial. Consistent with the idea that positive existential growth can come from individuals facing, rather than denying, their mortality (Cozzolino, 2006), the authors observed that not fearing and denying death can bolster important positive components of the self. That is, individuals low in death denial and death fear evidenced an enhanced self that is valued, clearly conceived, efficacious, and that has meaning and purpose

Integration of the practice of mindfulness within action learning as an added component within a post graduate leadership programme: an account of practice

This account of practice provides a practical example of the use of mindfulness practice within action learning which was a component of a bespoke UK Business School post-graduate leadership development programme commissioned by an English NHS Mental Health Trust aimed at improving the leadership capacity of mid-level managers through work-based learning. The article discusses background and context of the programme followed by how application of mindfulness exercises was integrated within the action learning process to encourage participants to be ‘in the moment’ as an added component of their leadership development. The aim of the paper is to share examples of practice applied within action learning. Finally, the paper asserts that the application of mindfulness exercises helped to enhance the action learning process by creating a calm, focused space for individual and collective reflections, enhancing the quality of engagement and enabling action learning members to take a more pragmatic approach to addressing the work issues raised within the action learning sets

The Online dating romance scam: The psychological impact on victims – both financial and non-financial

This paper examined the psychological impact of the online dating romance scam. Unlike other mass-marketing fraud victims, these victims experienced a ‘double hit’ of the scam: a financial loss and the loss of a relationship. For most, the loss of the relationship was more upsetting than their financial losses (many described the loss of the relationship as a ‘death’). Some described their experience as traumatic and all were affected negatively by the crime. Most victims had not found ways to cope given the lack of understanding from family and friends. Denial (e.g., not accepting the scam was real or not being able to separate the fake identity with the criminal) was identified as an ineffective means of coping, leaving the victim vulnerable to a second wave of the scam. Suggestions are made as to how to change policy with regards to law enforcement deal with this crime

An interpretative phenomenological analysis of posttraumatic growth in adults bereaved by suicide

This study explored experiences of posttraumatic growth in adults bereaved by suicide. Six participants were interviewed using a semi-structured interview schedule. Transcribed interviews were analyzed from an interpretative phenomenological framework. Two superordinate themes, with three ordinate themes in each, were identified: (a) positive growth (“life view,” “knowledge of self,” and “relation to others”) and (b) social context (“gaze of others,” “public guise,” and “solace of other survivors”). Suicide survivors gain extra insights due to their experiences, but are reluctant to acknowledge that they do. This requires consideration in theoretical and clinical setting

Patients' constructions of disability in metastatic spinal cord compression

Metastatic spinal cord compression (MSCC) is characterised by poor prognosis and serious physical disability. Patients have complex rehabilitation needs, but the evidence on rehabilitation is sparse. This study aimed to ascertain the constructions placed upon disability by patients with MSCC. A series of nine process-tracing, longitudinal case studies, involving 58 interviews with 9 patients, 6 carers, and 29 staff in one NHS region. A context-mechanism-outcome configuration was adopted as a conceptual basis for data collection, together with a constant comparative method of data analysis. Patients’ orientation to disability incorporated two apparently inconsistent attitudes. Patients acknowledged that their situation had changed, and that their future plans would need to accommodate altered circumstances. However, they also resisted the idea of themselves as disabled, wanting to retain an image of themselves as resourceful and resilient. Patients used a number of strategies to reconcile the tension between these two positions. The illusions incorporated into the ‘failure to acknowledge’ pole of this orientation are self-protective and, like other positive illusions, have psychological benefits. Providing effective and acceptable support to patients living with disability relies on professional responses that are able to sustain patients’ sense of their own competence