The lived experience of patients receiving radiotherapy for head and neck cancer: A literature review

It is estimated that 60% of patients diagnosed with head and neck cancer will receive radiotherapy at some stage in their disease trajectory. The aim of this literature review was to find and analyse papers pertaining to the lived experiences of patients with head and neck cancer receiving radiotherapy. The review identified a limited number of high-quality research papers focusing on this topic, with only 10 papers fitting the inclusion/exclusion criteria. The majority of the investigative studies were not generalisable owing to small sample sizes and many of them being conducted in only one centre. However, the findings do highlight and contribute to the understanding of the lived experiences of this patient group and provide some insight into the unique physical, social, and psychological difficulties they encounter as a result of their treatment. There appears to be a need for further high-level research into these patients, particularly focusing on the provision of support and information prior to, during, and following radiotherapy. Further attention needs to be paid to preparing patients for the slow recovery following radiotherapy. Interventional studies are also required to develop clinical guidelines and protocols that can assist health professionals in meeting the holistic needs of this patient group.

Up close and personal: A qualitative study exploring the lived experience of older carers. Mental Health and Learning Disabilities Research. 8 (1). Pp.15-29.

This study explored the experiences of informal carers who were aged 65 years and over. It has been estimated that 15 per cent of those aged 65 or over provide some form of informal care in England. Despite a growing literature on the involvement of older people in research, there is a paucity of literature on the involvement of older carers. In this study, older carers were identified via a General Practice (GP) register in one urban medical practice. Data was collected through a series of focus groups, which were transcribed and analysed using
thematic analysis. Every carer aged 55 or over and registered with the medical practice was invited to take part in the study. Four female carers and one male carer took part in the study (age range 65-83). Themes that emerged during data analysis included, 1) managing things in an emergency, 2) feeling valued because they took part in the research and 3) the day-to-day reality of living with social exclusion. GP registers provide a valuable tool for identifying older
carers who may otherwise be difficult to engage in research. However, persuading GPs to engage with qualitative research may be a challenge.

The experience of cancer cachexia: A qualitative study of advanced cancer patients and their family members

Background
Cachexia in advanced malignancy is a debilitating syndrome which contributes to approximately two million deaths worldwide annually. In spite of advances in understanding the biomedical aspects of cancer cachexia, little attention has been paid to exploring its holistic impact on patients and those who care for them.

Objective
The aim of this paper is to describe the lived experience of cachexia from the perspective of patients with cancer and their family members.

Design
An interpretative phenomenological approach was employed.

Setting and participants
A purposive sampling strategy recruited 15 patients and 12 family members from the Regional Cancer Centre in Northern Ireland.

Method
Each participant was interviewed during 2004/2005 using an unstructured interview. All interviews were recorded and transcribed verbatim. Analysis combined a two stage approach using thematic and interpretative phenomenological analysis.

Results
Analysis generated six superordinate themes that reflected the complex dynamics of the cachexia experience. Themes were: physiological changes in appetite; visuality of cachexia; weight loss interpreted as a bad sign; response from health care professionals; conflict over food; and coping responses.

Conclusions
Findings confirmed that cancer cachexia has far reaching implications for patients and their families, extending beyond physical problems into psychological, social and emotional issues. This insight is a critical first step in the development of more responsive care for these clients.

The student experience in Objective Structured Clinical Examinations (OSCEs): phenomenological analysis

Background and purpose
The dominant psychometric discourse of OSCEs may lead to unexpected problems, such as a checklist-based student performance1 which under emphasises the clinical relationship with student and standardised patient (SP). Such encounters can be dehumanising for SPs2 and have implications for what students learn about relational skills through the assessment process. In this study we explore medical students’ experiences of undertaking OSCEs using a phenomenological frame.
Methodology
Interpretative phenomenological analysis is a form of qualitative methodology which has strong resonance with existentialism and focuses on the lived experience without significant reference to external political or discursive
forces.
Six 4th year undergraduate medical students from Queen’s University Belfast were recruited in December 2013. Maximum variation sampling was used. Students were interviewed by a researcher in the week prior to the
OSCE and then again in the week following the OSCE in Jan 2014. Interviews were minimally structured in order to be open to respondents, rather than adhering to a fixed topic guide, but focussed on participants’ experiences, thoughts and feelings about taking part in OSCEs. Interviews were audio-recorded and
transcribed. Students were also asked to complete a short diary entry in the days prior to the OSCEs and another immediately following. Diary entries were written, emailed or audio-recorded at student’s preference.
Results
Transcripts are currently being analysed by interpretative phenomenological analysis. Preliminary analysis has demonstrated the significance of students’ relationships within the OSCE triad (student, SP and examiner); the effect of the immediate examination environment; realism versus roleplay; students’ perceptions of the purpose of assessment; and coping mechanisms.
Full results will be available by the time of the conference.
Conclusion and Discussion
Understanding the student experience in OSCEs is a crucial step in understanding the complex construction of relationships within the OSCE triad. The focus in OSCEs is typically on standardisation and reliability, but in exploring social interactions we may refocus attention on their inherent potential for learning and effects on both students and patients.
References
1. Hodges B. Medical education and the maintenance of incompetence. Med Teach 2006;28(8):690-6
2. Johnston JL, Lundy G, McCullough M, Gormley GJ. The view from over there: reframing the OSCE through the experience of standardised patient
raters. Med Educ 2013;47(9):899-909

‘I don’t think I’d be frightened if the statins went’: a phenomenological qualitative study exploring medicines use in palliative care patients, carers and healthcare professionals

Background

Chernobyl: Living with Risk and Uncertainty

The nuclear accident in Chernobyl in 1986 is a dramatic example of the type of incidents that are characteristic of a risk society. The consequences of the incident are indeterminate, the causes complex and future developments unpredictable. Nothing can compensate for its effects and it affects a broad population indiscriminately. This paper examines the lived experience of those who experienced biographical disruption as residents of the region on the basis of qualitative case studies carried out in 2003 in the Chernobyl regions of Russia, Ukraine and Belarus. Our analysis indicates that informants tend to view their future as highly uncertain and unpredictable; they experience uncertainty about whether they are already contaminated, and they have to take hazardous decisions about where to go and what to eat. Fear, rumours and experts compete in supplying information to residents about the actual and potential consequences of the disaster, but there is little trust in, and only limited awareness of, the information that is provided. Most informants continue with their lives and do what they must or even what they like, even where the risks are known. They often describe their behaviour as being due to economic circumstances; where there is extreme poverty, even hazardous food sources are better than none. Unlike previous studies, we identify a pronounced tendency among informants not to separate the problems associated with the disaster from the hardships that have resulted from the break-up of the USSR, with both events creating a deep-seated sense of resignation and fatalism. Although most informants hold their governments to blame for lack of information, support and preventive measures, there is little or no collective action to have these put in place. This contrasts with previous research which has suggested that populations affected by disasters attribute crucial significance to that incident and, as a consequence, become increasingly politicized with regard to related policy agendas.

Globalization, Plurilingualism and Young Learners in Mexico and Beyond

In the 21st century the teaching of English to young learners (TEYL) has become a truly global phenomenon. It is therefore important to deepen our understanding of the lived experience of TEYL in the very different settings where it is being taught. The 11 research-led accounts included in this volume are by TEYL teachers, teacher educators and other important stakeholders in a range of contexts around the world. The accounts span a variety of topics and issues in TEYL, each of personal importance to the authors themselves, and resonant with TEYL educators everywhere. The fresh practical and theoretical perspectives on different facets of TEYL that the chapters offer provide teachers and researchers with a set of stimulating ideas which can inform debate and pedagogical innovation in all areas of language teaching and educational research.

A Preliminary Qualitative Investigation of Voice Hearing and Its Association with Dissociation in Chronic PTSD

Following on from a quantitative study, this research used a qualitative methodology to investigate the lived experience of 3 men with chronic posttraumatic stress disorder associated with the conflict in Northern Ireland who reported auditory hallucinations. Data analysis used the Framework method. Results showed that beliefs about voices, dissociation of identity and body, and interpersonal impact were central superordinate themes associated with auditory hallucinations in posttraumatic stress disorder. Central subordinate themes included feeling a lack of controllability over voices, experiencing them as ego-dystonic, and feeling an increased sense of isolation and shame because of their presence. Results provide an in-depth analysis of participants' lived experiences and enhance understanding of previous quantitative findings.

‘Blessed are the young, for they shall inherit the national debt’: Solidarity between generations in the Irish crisis

Ireland has gained a reputation for peaceable acceptance of austerity following a European Union/International Monetary Fund bailout in 2010. While proponents of austerity praise Ireland’s stoicism, critics of global capitalism argue that individuals and families are paying for mistakes made by elites. However, little is known about the strategies people adopt to cope with cutbacks to welfare entitlements. Drawing on a study of solidarity between generations living in Ireland in 2011–12, this article explores the lived experience of economic crisis and austerity. One hundred interviews with people of all ages and socio-economic backgrounds are analysed using constructivist grounded theory. Data show how austerity impacts differentially according to socio-economic status. While solidarity between generations leads to re-distribution of resources within families, providing some security for people with access to family resources, it reinforces inequality at societal level. We conclude that reliance on family promotes ‘coping’ rather than ‘protesting’ responses to austerity.

Service user and carer participation in an endoscopy nursing programme

This article reports an initiative to improve students' insight into service user and carer experience of endoscopy, particularly those with severe disability, such as spinal cord injury. This insight has the potential to improve the information provided and level of person-centred care in an endoscopy service. It was evident in the feedback from the classroom encounter that the teaching and learning strategy had a positive outcome, which will allow us to integrate the approach into future curriculum development and delivery, bringing the lived experience from the service user and carer perspective into the classroom. Students engaged in discussion and used their reflective skills to develop sensitivity to those with physical disability and complex needs requiring endoscopy procedures.

A study exploring disordered eating patterns in first-year university students: student and service needs

This qualitative study explored disordered eating in a small group of first-year undergraduate students and addresses a gap in the literature by exploring their lived experience.

Aims: To better understand student’s needs in those experiencing or at risk of developing disordered eating during their first year at university and to illustrate what support mechanisms and services are required to better support students experiencing or at risk during their first year at university.

Conclusion: The University could further develop its outreach to new students with a more consistently supportive programme providing better facilities and training for stress appraisal and coping and more support via student buddying. The University could also extend its programme on positive mental health in an attempt to better inform on disordered eating and to reduce a sense of stigma within the student population. Personal tutors and student health care facilities need to be consistently trained in the understanding and person centred approach to students experiencing disordered eating, particularly the sub-clinical group. In addition the University could consider some small changes and adaptations to the refectory eating areas to better facilitate students who may be at risk from disordered eating. Finally the University could perhaps better use the potentially liminal period within the first few months of student's arrival at university (a new beginning) to help embed a program to develop a stronger sense of coherence and well-being.

Unmasking the ‘Elderly Mystique’: why it is time to make the personal political in ageing research

This article uses feminist scholarship to investigate ‘the elderly mystique’ – which contends that the potential of old age is masked by a set of false beliefs about ageing (i.e. ageism) which permeate social, economic and political life (Cohen, 1988).
The article presents a theoretical model which explores the extent to which institutionalised ageism shapes the trajectory of life after 60. The hypothesis under-pinning the model is simple: The challenge for ageing societies is not the average age of a given population but, rather, how age is used to structure economic, social and political life. An inter-disciplinary framework is used to examine how biological facts about ageing are used to segregate older from younger people, giving older people the status of “other”; economically through retirement, politically through assumptions about ‘the grey vote’ and socially through ageist stereotyping in the media and through denial and ridicule of the sexuality of older people. Each domain is informed by the achievements of feminist theory and research on sexism and how its successes and failures can inform critical investigations of ageism.
The paper recognises the role of ageism in de-politicising the lived experience of ageing. The paper concludes that feminist scholarship, particularly work by feminists in their seventies, eighties and nineties has much to offer in terms of re-framing gerontology as an emancipatory project for current and future cohorts of older people.

Experiencing Youth Justice and Penality

Much of the recent literature on youth justice has focused on administrative aspects of the system and the socio-political contexts that have led to the ‘production’ of the youthful offender as a subject and locus of intervention. This has largely been driven by the extent to which youth justice has been crafted as a distinct penal sphere, evident in its unyoking from universal children’s services (Muncie and Goldson, 2013) and the establishment of separate agencies to administer and govern this ‘system’ (Souhami, 2014). Driven by policy hyperactivity and a plethora of legislation expanding the reach of the system, for much of the 1990s and 2000s increasing numbers of young people were brought under its gaze.

Particular attention has been paid to the impact of neo-liberal governance on the discourses, rationales and philosophies underpinning contemporary youth justice policy and practice. Writing specifically in the English and Welsh context, several authors have identified that the resulting ‘system’ embodies multiple, contradictory and competing discourses (Muncie, 2006; Fergusson, 2007; Gray, 2013). Within this ‘melting pot’ Fergusson (2007) notes the disjuncture between policy rhetoric, implementation and lived experience and Phoenix (2015) argues that systems-based analyses, much in favour amongst academics, foreclose a wider consideration of questions of what ‘justice’ actually means.

Recent attention towards the perspectives of practitioners working in this sphere has pointed to greater nuances than broader penal narratives suggest (see: Field, 2007; Briggs, 2013; Gray, 2013; Kelly and Armitage, 2015). Yet similar attention has not been given to experiences of youth justice (for an exception see – Phoenix and Kelly, 2013). However, it is precisely young people’s experiences, which would add significantly to current knowledge and potentially bridge the gap between discussions about penal philosophies, how youth justice policies are framed, how they are enacted and how they are experienced.

This chapter provides an overview of recent developments in the field of youth justice and penality in the United Kingdom. The chapter argues that a theoretical focus on macro-level trends (Hannah-Moffat and Lynch, 2012), alongside a narrowly defined research agenda, have largely excluded young people’s experiences of justice and punishment from contemporary analysis. Drawing on young people experiences of different aspects of youth justice in Northern Ireland and beyond, the chapter illuminates what a close understanding of lived experience can add to knowledge. In particular it demonstrates that the effects of interventions can be different to their aims and intentions; and that re-instating the youth experience can add support to calls for greater attention to wider issues of social justice.

ME and Julie:a study in narrative of illness experience and therapy in a Myalgic Encephalomyelitis sufferer

This article uses what Atkinson and Walmsley (1997) refer to as an ‘autobiographical account’ to explore the themes and relationships between narrative, illness experience and therapy in a Myalgic Encephalomyelitis (ME) sufferer. Julie is a chronic ME sufferer, having lived with ME for the past 12 years. Her life-story over those years, as she presents it, casts our attention to the intrinsically personal nature of her ‘illness experience’ and to her distinctively artistic therapeutic responses to her condition. Julie’s autobiographical narrative reveals how ME has penetrated both her body and her sense of self, her limbs as well as her dreams; as though it were a parasite feeding off her fight to regain health. In terms of narrative, Julie’s ME illness progresses from past to present, but never to the future which lies beyond contemplation. Despite this denial of the future, Julie does think of ME as a liminal phase which is to be coped through. As both spatial object and temporal event, Julie conceptualises her ME variously, dealing with it on a day-to-day basis, increasingly turning to landscape painting as a form of escapism which parallels her former physical outward bound activities. This personal therapy, so this article concludes, constitutes both narrative performance and narrative text (as canvas), both of which can only cautiously be independently interpreted by the (inter)viewer.