Late effects of cancer and cancer treatment-the perspective of the patient

PURPOSE: Understanding the experience of late effects from the perspective of cancer survivors is essential to inform patient-centred care. This study investigated the nature and onset of late effects experienced by survivors and the manner in which late effects have affected their lives.

METHODS: Sixteen purposively selected cancer survivors participated in a qualitative interview study. The data were analysed inductively using a narrative schema in order to derive the main themes that characterised patients' accounts of late effects.

RESULTS: Individual survivors tended to experience more than one late effect spanning a range of physical and psychological effects. Late effects impacted on relationships, working life, finances and the ability to undertake daily activities. Survivors reported experiencing psychological late effects from around the end of treatment whereas the onset of physical effects occurred later during the post-treatment period. Late effects were managed using formal health services, informal social support and use of 'wellbeing strategies'. Survivors engaged in a process of searching for reasons for experiencing late effects and struggled to make sense of their situation. In particular, a process of 'peer-patient comparison' was used by survivors to help them make sense of, or cope with, their late effects. There appeared to be an association between personal disposition and adaptation and adjustment to the impact of late effects.

CONCLUSIONS: Cancer survivors identified potential components for supported self-management or intervention programmes, as well as important considerations in terms of peer comparisons, personal disposition and making sense of experienced late effects.

'Talk to me': a mixed methods study on preferred physician behaviours during end-of-life communication from the patient perspective

Background
Despite the recognized importance of end-of-life (EOL) communication between patients and physicians, the extent and quality of such communication is lacking.

Objective
We sought to understand patient perspectives on physician behaviours during EOL communication.

Design
In this mixed methods study, we conducted quantitative and qualitative strands and then merged data sets during a mixed methods analysis phase. In the quantitative strand, we used the quality of communication tool (QOC) to measure physician behaviours that predict global rating of satisfaction in EOL communication skills, while in the qualitative strand we conducted semi-structured interviews. During the mixed methods analysis, we compared and contrasted qualitative and quantitative data.

Setting and Participants
Seriously ill inpatients at three tertiary care hospitals in Canada.

Results
We found convergence between qualitative and quantitative strands: patients desire candid information from their physician and a sense of familiarity. The quantitative results (n = 132) suggest a paucity of certain EOL communication behaviours in this seriously ill population with a limited prognosis. The qualitative findings (n = 16) suggest that at times, physicians did not engage in EOL communication despite patient readiness, while sometimes this may represent an appropriate deferral after assessment of a patient's lack of readiness.

Conclusions
Avoidance of certain EOL topics may not always be a failure if it is a result of an assessment of lack of patient readiness. This has implications for future tool development: a measure could be built in to assess whether physician behaviours align with patient readiness.

The Aran jumper: Crafting a Transatlantic Heritage

The garment we now recognise as the Aran jumper emerged as an international symbol of Ireland from the twin twentieth century transatlantic flows of migration and tourism. Its power as a heritage object derives from: 1) the myth commonly associated with the object, in which the corpse of a drowned fisherman is identified and claimed by his family due to the stitch patterns of his jumper (Pádraig Ó Síochain 1962; Annette Lynch and Mitchell Strauss 2014); 2) the meanings attached to those stitch patterns, which have been read, for example, as genealogical records, representations of the natural landscape and references to Christian and pre-Christian ‘Celtic’ religion (Heinz Kiewe 1967; Catherine Nash 1996); and 3) booming popular interest in textile heritage on both sides of the Atlantic, fed by the reframing of domestic crafts such as knitting as privileged leisure pursuits (Rachel Maines 2009; Jo Turney 2009). The myth of the drowned fisherman plays into transatlantic migration narratives of loss and reclamation, promising a shared heritage that needs only to be decoded. The idea of the garment’s surface acting as text (or map) situates it within a preliterate idyll of romantic primitivism, while obscuring the circumstances of its manufacture. The contemporary resurgence in home textile production as recreation, mediated through transnational online networks, creates new markets for heritage textile products while attracting critical attention to the processes through which such objects, and mythologies, are produced. The Aran jumper’s associations with kinship, domesticity and national character make it a powerful tool in the promotion of ancestral (or genealogical) tourism, through marketing efforts such as The Gathering 2013. Nash’s (2010; 2014) work demonstrates the potential for such touristic encounters to disrupt and enrich public conceptions of heritage, belonging and relatedness. While the Aran jumper has been used to commodify a simplistic sense of mutuality between Ireland and north America, it carries complex transatlantic messages in both directions.

Care Leavers’ Experiences of Transition and Turning Points: Findings from a Biographical Narrative Study

This paper reports on the findings of a PhD research project that set out to explore how young people leaving out of home care experienced and made sense of their transition to adulthood. Using the Biographical Narrative Interpretative Method, in-depth accounts were collected and analysed for eight care leavers. The data suggest that in addition to care leavers living their lives as a series of biographical events, their ‘care career’, they also experience changes in the way they make sense of their lives which form a ‘subjective pathway’. Influenced by the literature on resilience, the research had anticipated that ‘turning point’ events would play a significant role in the young people’s subjective pathways. But the findings show a more gradual, phased shifting of subjectivity. It is suggested that legislation, policy, services and care practices need to facilitate this more drawn out ‘subjective pathway’. Attachment, resilience and humanistic social psychology are proposed as useful theoretical underpinnings for that work

Participatory Sonic Arts: towards a socially engaged art of sound in the everyday (The Som da Maré Project)

Participatory and socially engaged art practices have, for a couple of decades, emerged a myriad of aesthetic and methodological strategies across different media. These are artistic practices that have a primary interest in participation, affecting social dynamics, dialogue and at times political activism. Nato Thompson in “Living Form: Socially Engaged Art from 1991-2011” surveys these
practices, which range from theatre to urban planning, visual art to healthcare. Linked to notions such as relational aesthetics (Bourriaud, 1998), community art and public art, socially engaged art often focuses on the development of a sense of ownership by the part of participants. If an artist is working truly collaboratively with participants and addressing the reality of a particular community, the long-term effect of a project lies in the process of engagement as well as in the artwork itself. Projects by New York based artist Pablo Helguera, for example, use different media to engage with social inequalities through participative action while rejecting the notion of art for art sake.

“Socially engaged art functions by attaching itself to subjects and problems that normally belong to other disciplines, moving them temporarily into a space of ambiguity. It is this temporary snatching away of subjects into the realm of art-making that brings new insights to a particular problem or condition and in turn makes it visible to other disciplines.” (Helguera, 2011)

Socially engaged practices develop the notion of artwork about or by a community, to work of a community. In this chapter we address how socially engaged, participatory approaches can form a context for the sonic arts, arguably less explored than practices such as theatre and performance art. The use of sound is clearly present in a wide range of socially engaged work (e.g. Helguera’s “Aelia Media” enabling a nomadic radio station in Bologna or Maria Andueza “Immigrant Sounds – Res(on)Art (Stockholm)” exploring ways of sonically resonating a city, or Sue MacCauley’s “The Housing Project” addressing ways of representing the views of urban dwellers on public scape through sound art. It is nevertheless rare to encounter projects which take our experience of sound in the everyday as a trigger for community social engagement in a participatory context.
We address concepts and methodologies behind the project Som da Maré, a participatory sonic arts project in the favelas of Maré, Rio de Janeiro.

Speaking Out Online:The Benefits and Risks of Speaking About Sexual Violence for Young People

Speaking out about sexual violence has been a fundamental part of feminist politics since the 1970s. The practice of narrating experiences of violence, either publicly or to friends and family aims to combat the culture of silence and stigmatisation that surrounds sexual violence while also helping individuals to gain a sense of empowerment and connect with other survivors. However, speaking out also contains inherent risks, especially for young people. Survivors may meet with stigmatising or disbelieving responses, and they may lose control over who knows their story and the way in which it is told and retold.
These risks and benefits are altered, and potentially exacerbated, in an online environment. While social media may increase survivors’ ability to contact and connect with others with similar experiences it also makes it harder to control when and how their story is shared. The disjuncture between online and offline environments may also increase feelings of stigmatisation and isolation.
There is a need to explore the specific risks and benefits of speaking out online given both young people’s extensive use of social media for social interactions and the increasing tendency for support and educational services targeted at young people to make use of social media and online environments. This paper draws on literature and some preliminary research to consider both risks and benefits of speaking out online and to open a conversation about the creation of supportive spaces and mechanisms for young people to speak about sexual violence in online environments.

Commemoration in the United Kingdom: A multitude of memories

In the United Kingdom (UK) the centenary commemoration of the First World War has been driven by a combination of central government direction (and funding) with a multitude of local and community initiatives, with a particular focus on 4 August 2014; 1 July 2016 (the beginning of the Battle of the Somme) and 11 November 2018. ‘National’ ceremonies on these dates have been and will be supplemented with projects commemorating micro-stories and government-funded opportunities for schoolchildren to visit Great War battlefields, the latter clearly aimed to reinforce a contemporary sense of civic and national obligation and service. This article explores the problematic nature of this approach, together with the issues raised by the multi-national nature of the UK state itself.

Factors that impact on the use of mechanical ventilation weaning protocols in critically ill adults and children: a qualitative-evidence synthesis

Background:
Prolonged mechanical ventilation is associated with a longer intensive care unit (ICU) length of stay and higher mortality. Consequently, methods to improve ventilator weaning processes have been sought. Two recent Cochrane systematic reviews in ICU adult and paediatric populations concluded that protocols can be effective in reducing the duration of mechanical ventilation, but there was significant heterogeneity in study findings. Growing awareness of the benefits of understanding the contextual factors impacting on effectiveness has encouraged the integration of qualitative evidence syntheses with effectiveness reviews, which has delivered important insights into the reasons underpinning (differential) effectiveness of healthcare interventions.

Objectives:
1. To locate, appraise and synthesize qualitative evidence concerning the barriers and facilitators of the use of protocols for weaning critically-ill adults and children from mechanical ventilation;

2. To integrate this synthesis with two Cochrane effectiveness reviews of protocolized weaning to help explain observed heterogeneity by identifying contextual factors that impact on the use of protocols for weaning critically-ill adults and children from mechanical ventilation;

3. To use the integrated body of evidence to suggest the circumstances in which weaning protocols are most likely to be used.

Search methods:
We used a range of search terms identified with the help of the SPICE (Setting, Perspective, Intervention, Comparison, Evaluation) mnemonic. Where available, we used appropriate methodological filters for specific databases. We searched the following databases: Ovid MEDLINE, Embase, OVID, PsycINFO, CINAHL Plus, EBSCOHost, Web of Science Core Collection, ASSIA, IBSS, Sociological Abstracts, ProQuest and LILACS on the 26th February 2015. In addition, we searched: the grey literature; the websites of professional associations for relevant publications; and the reference lists of all publications reviewed. We also contacted authors of the trials included in the effectiveness reviews as well as of studies (potentially) included in the qualitative synthesis, conducted citation searches of the publications reporting these studies, and contacted content experts.

We reran the search on 3rd July 2016 and found three studies, which are awaiting classification.

Selection criteria:
We included qualitative studies that described: the circumstances in which protocols are designed, implemented or used, or both, and the views and experiences of healthcare professionals either involved in the design, implementation or use of weaning protocols or involved in the weaning of critically-ill adults and children from mechanical ventilation not using protocols. We included studies that: reflected on any aspect of the use of protocols, explored contextual factors relevant to the development, implementation or use of weaning protocols, and reported contextual phenomena and outcomes identified as relevant to the effectiveness of protocolized weaning from mechanical ventilation.

Data collection and analysis:
At each stage, two review authors undertook designated tasks, with the results shared amongst the wider team for discussion and final development. We independently reviewed all retrieved titles, abstracts and full papers for inclusion, and independently extracted selected data from included studies. We used the findings of the included studies to develop a new set of analytic themes focused on the barriers and facilitators to the use of protocols, and further refined them to produce a set of summary statements. We used the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) framework to arrive at a final assessment of the overall confidence of the evidence used in the synthesis. We included all studies but undertook two sensitivity analyses to determine how the removal of certain bodies of evidence impacted on the content and confidence of the synthesis. We deployed a logic model to integrate the findings of the qualitative evidence synthesis with those of the Cochrane effectiveness reviews.

Main results:
We included 11 studies in our synthesis, involving 267 participants (one study did not report the number of participants). Five more studies are awaiting classification and will be dealt with when we update the review.

The quality of the evidence was mixed; of the 35 summary statements, we assessed 17 as ‘low’, 13 as ‘moderate’ and five as ‘high’ confidence. Our synthesis produced nine analytical themes, which report potential barriers and facilitators to the use of protocols. The themes are: the need for continual staff training and development; clinical experience as this promotes felt and perceived competence and confidence to wean; the vulnerability of weaning to disparate interprofessional working; an understanding of protocols as militating against a necessary proactivity in clinical practice; perceived nursing scope of practice and professional risk; ICU structure and processes of care; the ability of protocols to act as a prompt for shared care and consistency in weaning practice; maximizing the use of protocols through visibility and ease of implementation; and the ability of protocols to act as a framework for communication with parents.

Authors' conclusions:
There is a clear need for weaning protocols to take account of the social and cultural environment in which they are to be implemented. Irrespective of its inherent strengths, a protocol will not be used if it does not accommodate these complexities. In terms of protocol development, comprehensive interprofessional input will help to ensure broad-based understanding and a sense of ‘ownership’. In terms of implementation, all relevant ICU staff will benefit from general weaning as well as protocol-specific training; not only will this help secure a relevant clinical knowledge base and operational understanding, but will also demonstrate to others that this knowledge and understanding is in place. In order to maximize relevance and acceptability, protocols should be designed with the patient profile and requirements of the target ICU in mind. Predictably, an under-resourced ICU will impact adversely on protocol implementation, as staff will prioritize management of acutely deteriorating and critically-ill patients.

Justifying accounting change through global discourses and legitimation strategies. The case of the UK central government.

Accounting has been viewed, especially through the lens of the recent managerial reforms, as a neutral technology that, in the hands of rational managers, can support effective and efficient decision making. However, the introduction of new accounting practices can be framed in a variety of ways, from value-neutral procedures to ideologically-charged instruments. Focusing on financial accounting, budgeting and performance management changes in the UK central government, and through extensive textual analysis and interviews in three government departments, this paper investigates: how accounting changes are discussed and introduced at the political level through the use of global discourses; and what strategies organisational actors subsequently use to talk about and legitimate such discourses at different organisational levels. The results shows that in political discussions there is a consistency between the discourses (largely NPM) and the accounting-related changes that took place. The research suggests that a cocktail of legitimation strategies was used by organisational actors to construct a sense of the changes, with authorisation, often in combination with, at the very least, rationalisation strategies most widely utilised. While previous literature posits that different actors tend to use the same rhetorical sequences during periods of change, this study highlights differences at different organisational levels.

The role of knowledge in the contraceptive behaviour of sexually active young people in state care

Aim: To analyse the role of sex-focused knowledge in the contraceptive behaviour of sexually active young people in state care.

Methods: The sample consisted of 19 care leavers (young people previously in state care) aged 18-22 years, 16 females and 3 males. In-depth interviewing was the method of data collection, and a qualitative strategy resembling modified analytical induction was used to analyse data.

Findings: Findings indicated that a lack of information was not the sole, or even the primary reason for engaging in unsafe sexual practices. Other factors such as ambivalence to becoming pregnant also featured in participants’ accounts. Several participants conveyed a relatively weak sense of agency about consistently using contraception. A small number of participants expressed a strong determination to avoid pregnancy, and these appeared to have a level of anxiety about becoming pregnant that motivated them to engage with knowledge about contraception and its use.

Conclusion: Lack of sex-focused information is just one aspect of a myriad of complex factors, including socioeconomic disadvantage and/or emotional deprivation, that influences contraceptive behaviour.

Healthcare Staff Experience of Providing End-of-Life Care to Children: A Mixed Method Review

Background: Staff who provide end-of-life care to children not only have to deal with their own sense of loss, but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
Aim: The aim of this review is to explore the experiences of health care professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
Data sources: Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO, and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
Design: This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
Results: The 16 qualitative, six quantitative, and eight mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff’s personal and professional lives, coping strategies, and key approaches to help support staff in their role.
Conclusions: Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing are key strategies for improving healthcare staffs’ experiences, and as such the quality of care they provide.

Praying for Salvation: A Map of Relatedness

This article attempts to push Mauss’ work on the sociality of prayer (1909) to its fullest conclusion by arguing that prayer can be viewed anthropologically as providing a map for social and emotional relatedness. Based on fieldwork among deep-sea fisher families living in Gamrie, North-East Scotland (home to 700 people and six Protestant churches), the author takes as his primary ethnographic departure the ritual of the ‘mid-week prayer meeting’. Among the self-proclaimed ‘fundamentalists’ of Gamrie’s Brethren and Presbyterian churches, attending the prayer meeting means praying for salvation. Yet, contrary to the stereotype of Protestant soteriology as highly individualist, in the context of Gamrie, salvation is not principally focused upon the self, but is instead sought on behalf of the ‘unconverted’ other. Locally, this ‘other’ is made sense of with reference to three different categories of relatedness: the family, the village and the nation. The author’s argument is that each category of relatedness carries with it a different affective quality: anguish for one’s family, resentment toward one’s village, and resignation towards one’s nation. As such, prayers for salvation establish and maintain not only vertical – human-divine – relatedness, but also horizontal relatedness between persons, while also giving them their emotional tenor. In ‘fundamentalist’ Gamrie, these human relationships, and crucially their affective asymmetries, may be mapped, therefore, by treating prayers as social phenomena that seek to engage with a world dichotomised into vice and virtue, rebellion and submission, and, ultimately, damnation and salvation.

Forced Displacement, Suffering and the Aesthetics of Loss

This article investigates how artists have addressed shocking experiences of displacement in different political contexts. Drawing on the notion of ‘the aesthetics of loss’ (Köstlin, 2010), it examines and compares the different aims, desires and strategies that have shaped the histories and social lives of paintings, memorial statues, installations and other artefacts. The analysis identifies a mode of artistic engagement with the sense of a ‘loss of homeland’ that has been commonly felt amongst Sudeten German expellees, namely the production and framing of visual images as markers of collective trauma. These aesthetics of loss are contrasted with the approach taken by the Dutch artist Sophie Ernst in her project entitled HOME. Working with displaced people from Pakistan, India, Palestine, Israel and Iraq, she created a mnemonic space to stimulate a more individualistic, exploratory engagement with the loss of home, which aimed, in part, to elicit interpersonal empathy. To simply oppose these two modes of aesthetic engagement, however, would ignore the ways in which artefacts are drawn into different discursive, affective and spatial formations. This article argues for the need to expose such dynamic processes of framing and reframing by focusing on the processual aspects of aestheticisation with attention to the perspective of loss.

The Evolution of Extreme Cooperation via Shared Dysphoric Experiences

Willingness to lay down one’s life for a group of non-kin, well documented in the
historical and ethnographic records, represents an evolutionary puzzle. Here we
present a novel explanation for the willingness to fight and die for a group, combining evolutionary theorizing with empirical evidence from real-world human groups. Building on research in social psychology, we develop a mathematical model showing how conditioning cooperation on previous shared experience can allow extreme (i.e., life-threatening) pro-social behavior to evolve. The model generates a series of predictions that we then test empirically in a range of special sample populations (including military veterans, college fraternity/sorority members, football fans, martial arts practitioners, and twins). Our results show that sharing painful experiences produces “identity fusion” – a visceral sense of oneness – more so even than bonds of kinship, in turn motivating extreme pro-group behavior, including willingness to fight and die for the group. These findings have theoretical and practical relevance. Theoretically, our results speak to the origins of human cooperation, as we offer an explanation of extremely costly actions left unexplained by existing models.
Practically, our account of how shared dysphoric experiences produce identity fusion, which produces a willingness to fight and die for a non-kin group, helps us better understand such pressing social issues as suicide terrorism, holy wars, sectarian violence, gang-related violence, and other forms of intergroup conflict.