Healing ourselves: ethical subjectivity in the stories of complementary self-help users with cancer

This thesis explores conceptualisations of ethical subjectivity in the stories of people who have, or have had, cancer and who use complementary therapies and self-help (complementary self-health). In England the increasing emphasis on individual responsibility and choice in healthcare means that those with cancer are now in the position where they have to make many of their own decisions about their treatment. For the people with cancer in this research this included choosing complementary self-health. The thesis explores the stories and experiences of people with cancer who used complementary self-health. The aim of the thesis is to document and make visible the many original ways people come to understand themselves as able to ‘heal’ their health, self and life. The thesis also reflects on the highly unusual position of the author, who was himself diagnosed with cancer mid-way through his fieldwork. The problems and challenges to the research are explored in the thesis, which became a story in itself. The thesis finds the ‘price that is paid’ for the way that the interviewees came to think of their selves in their subjectivity. The interviewees told open and ongoing stories of ‘balanced living’ and how they found ways to listen to their ‘embodied guides’. They also described how understanding ‘cancer as an opportunity for change’ helped to transform and transcend their previous ways of living. In doing so they provided themselves with new narratives of the past and future, which were situated by ‘living in the now’. The thesis explores the ethico-political repercussions of these new formations of subjectivity. In doing so it argues that the ‘spiritual’ component of the stories remains unaccounted for and under conceptualised in contemporary sociological theory of health. It concludes with suggestions of how to move contemporary analysis beyond its present ethical concerns with the subject

Healing ourselves : ethical subjectivity in the stories of complementary self-help users with cancer

This thesis explores conceptualisations of ethical subjectivity in the stories of people who have, or have had, cancer and who use complementary therapies and self-help (complementary self-health). In England the increasing emphasis on individual responsibility and choice in healthcare means that those with cancer are now in the position where they have to make many of their own decisions about their treatment. For the people with cancer in this research this included choosing complementary self-health. The thesis explores the stories and experiences of people with cancer who used complementary self-health. The aim of the thesis is to document and make visible the many original ways people come to understand themselves as able to ‘heal’ their health, self and life. The thesis also reflects on the highly unusual position of the author, who was himself diagnosed with cancer mid-way through his fieldwork. The problems and challenges to the research are explored in the thesis, which became a story in itself. The thesis finds the ‘price that is paid’ for the way that the interviewees came to think of their selves in their subjectivity. The interviewees told open and ongoing stories of ‘balanced living’ and how they found ways to listen to their ‘embodied guides’. They also described how understanding ‘cancer as an opportunity for change’ helped to transform and transcend their previous ways of living. In doing so they provided themselves with new narratives of the past and future, which were situated by ‘living in the now’. The thesis explores the ethico-political repercussions of these new formations of subjectivity. In doing so it argues that the ‘spiritual’ component of the stories remains unaccounted for and under conceptualised in contemporary sociological theory of health. It concludes with suggestions of how to move contemporary analysis beyond its present ethical concerns with the subject.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Online support groups for carers of people living with dementia : an investigation of videoconferencing support groups in lockdown

Background: This study aimed to explore the experiences of carers of people living with dementia who participated in videoconferencing support groups during the COVID-19 pandemic to investigate their preferences and experiences with online, hybrid, and face-to-face support. Methods: This convergent mixed methods design study utilised an online questionnaire and semi-structured interviews. Interviews took place over videoconferencing software and were analysed through thematic analysis. Participants were recruited from support groups based in the UK and Ireland. Results: 39 carers of people living with dementia completed the questionnaire and 16 carers participated in interviews. Participants found videoconferencing support groups more convenient, but face-to-face groups more enjoyable. Participants who had found it difficult to access face-to-face groups prior to COVID-19 expressed more positive perceptions of videoconference-based groups. Many felt that hybrid groups would make it easier for more people to attend. However, some carers described lacking the resources and technological skills to participate in online support groups effectively. Some suggested making IT training available may improve the capacity of carers to access support online. Conclusion: Videoconferencing support groups can be an appropriate way of supporting carers of people with dementia, especially for those who do not have access to face-to-face support groups. However, face-to-face support remains important to carers and should be made available when it can be implemented safely. Hybrid support groups could allow for increased accessibility while still providing the option of face-to-face contact for those who prefer it or are not adept with technology

GPs’ understanding and practice of safety netting for potential cancer presentations : a qualitative study in primary care

Background Safety netting is a diagnostic strategy used in UK primary care to ensure patients are monitored until their symptoms or signs are explained. Despite being recommended in cancer diagnosis guidelines, little evidence exists about which components are effective and feasible in modern-day primary care. Aim To understand the reality of safety netting for cancer in contemporary primary care. Design and setting A qualitative study of GPs in Oxfordshire primary care. Method In-depth interviews with a purposive sample of 25 qualified GPs were undertaken. Interviews were recorded and transcribed verbatim, and analysed thematically using constant comparison. Results GPs revealed uncertainty about which aspects of clinical practice are considered safety netting. They use bespoke personal strategies, often developed from past mistakes, without knowledge of their colleagues’ practice. Safety netting varied according to the perceived risk of cancer, the perceived reliability of each patient to follow advice, GP working patterns, and time pressures. Increasing workload, short appointments, and a reluctance to overburden hospital systems or create unnecessary patient anxiety have together led to a strategy of selective active follow-up of patients perceived to be at higher risk of cancer or less able to act autonomously. This left patients with low-risk-but-not-no-risk symptoms of cancer with less robust or absent safety netting. Conclusion GPs would benefit from clearer guidance on which aspects of clinical practice contribute to effective safety netting for cancer. Practice systems that enable active follow-up of patients with low-risk-but-not-no-risk symptoms, which could represent malignancy, could reduce delays in cancer diagnosis without increasing GP workload

How do GPs and patients share the responsibility for cancer safety netting follow-up actions? A qualitative interview study of GPs and patients in Oxfordshire, UK

Objective: To explore patients’ and General Practitioners' (GPs) accounts of how responsibility for follow-up was perceived and shared in their experiences of cancer safety netting occurring within the past 6 months. Design: In-depth interviews were recorded and transcribed verbatim. Data were analysed through an abductive process, exploring anticipated and emergent themes. Conceptualisations of ‘responsibility’ were explored by drawing on a transactional to interdependent continuum drawing from the shared decision-making literature. Settings and participants: A purposive sample of 25 qualified GPs and 23 adult patients in Oxfordshire, UK. Results: The transactional sharing approach involves responsibility being passed from GP to patient. Patients expected and were willing to accept responsibility in this way as long as they received clear guidance from their GP and had capacity. In interdependent sharing, GPs principally aimed to reach consensus and share responsibility with the patient by explaining their rationale, uncertainty or by stressing the potential seriousness of the situation. Patients sharing this responsibility could be put at risk if no follow-up or timeframe was suggested, they had inadequate information, were falsely reassured or their concerns were not addressed at re-consultation. Conclusion: GPs and patients exchange and share responsibility using a combination of transactional and interdependent styles, tailoring information based on patient characteristics and each party’s level of concern. Clear action plans (written where necessary) at the end of every consultation would help patients decide when to re-consult. Further research should investigate how responsibility is shared within and outside the consultation, within primary care teams and with specialist services

Implementing advance care planning in heart failure : a qualitative study of primary healthcare professionals

Background: Advance care planning (ACP) can improve the quality of life of patients suffering from heart failure (HF). However, primary care healthcare professionals (HCPs) find ACP difficult to engage with and patient care remains suboptimal. Aim: To explore the views of primary care HCPs on how to improve their engagement with ACP in heart failure. Design and Setting: A qualitative interview study with GPs and primary care nurses in England. Method: Semi-structured interviews were conducted with a purposive sample of 24 primary HCPs. Data were analysed using reflexive thematic analysis. Results: Three main themes were constructed from the data: ACP as integral to holistic care in HF; potentially limiting factors to the doctor-patient relationship; approaches to improve professional performance. Many HCPs saw the benefits of ACP as synonymous with providing holistic care and improving patients’ quality of life. However, some feared that initiating ACP could irrevocably damage their doctor-patient relationship. Their own fear of death and dying, a lack of disease specific communication skills and uncertainty about the right timing were significant barriers to ACP. To optimise their engagement with ACP in HF, HCPs recommended better clinician-patient dialogue through question prompts, enhanced shared decision-making approaches, synchronising ACP across medical specialities, and disease specific training. Conclusion: GPs and primary care nurses are vital to deliver ACP for patients suffering from HF. HCPs highlighted important areas to improve their practice and the urgent need for investigations into better clinician-patient engagement with ACP

Compassionate communities and cities in low and middle-income countries : a systematic review protocol to identify transferrable lessons for implementation in the primary care context

Introduction: Compassionate Communities are neighbourhood or village level organizations that addresses the holistic concept of health, physical, psychological, spiritual and social well-being. It is estimated that out of the 40 million individuals who require palliative care each year, 78 per cent reside in low- and middle-income countries. Objective: Compassionate Communities and Cities are based on a health promotion approach to palliative care, with the goal of supporting individuals in solidarity at the end of life. This systematic review aims to analyse Compassionate Communities and Cities initiatives in low- and middle-income countries to identify transferrable lessons for implementation in the primary care context. Methods: A comprehensive, search for studies indexed in Medline, EMBASE, PsycINFO, Web of Science and Scopus databases and grey literature will be conducted using an electronic search strategy. The search strategy will include terms (and synonyms) describing Compassionate Communities and Cities, palliative care and low- and middle-income countries. Article screening will be conducted in two rounds. First, a title and abstract screening will be conducted followed by a full-text screening. Article selection will be conducted by two independent reviewers. Studies or articles fulfilling the inclusion criteria will be evaluated using a data extraction form. Data on objectives, study population, study setting, study characteristics and outcomes will be independently extracted by two reviewers. The reviewers will independently assess the methodological quality of included studies. A narrative synthesis approach will be employed to summarise and explain the extracted data. Results: The systemic review will be carried out and documented in accordance with the Preferred Reporting Items for Systematic Reviews and MetaAnalyses. Conclusions: This systematic review will summarise the evidence and provide recommendations for the development and the implementation of Compassionate Communities and Cities approach in other low resource settings

The emotional effects on professional interpreters of interpreting palliative care conversations for adult patients : a rapid review

Background: Professional interpreters working in palliative contexts improve patient care. Whilst literature identifies psychological distress in other healthcare professionals, research into emotional effects on professional interpreters in this highly emotive setting is limited. Isolating emotional responses may enable targeted interventions to enhance interpreter use and improve wellbeing. Timely evidence is needed to urgently familiarise the profession with issues faced by these valuable colleagues, to affect practice. Aim: Describe the emotional effects on professional interpreters of interpreting adult palliative care conversations. Collate recommendations to mitigate negative emotional effects. Design: We performed a rapid review of studies identifying emotional effects on professional interpreters of interpreting adult palliative conversations. Rapid review chosen to present timely evidence to relevant stakeholders in a resource-efficient way. Thematic analysis managed using NVivo. Quality appraisal evaluated predominantly using CASP checklists. Reported using PRISMA guidelines. PROSPERO registration CRD42022301753. Data sources: Articles available in English on PubMed [1966–2021], MEDLINE [1946–2021], EMBASE [1974–2021], CINAHL [1981–2021] and PsycINFO [1806–2021] in December 2021. Results: Eleven articles from the USA (5), Australia (3), Canada (2) and UK (1). Eight interview-based, two online surveys and one quality improvement project. Themes included (1) Identifying diversity of emotional effects: emotions including stress, discomfort, loneliness. (2) Identifying factors affecting interpreters’ emotional responses: impact of morals, culture and role expectations; working with patients and families; interpreter experience and age. (3) Recommendations to mitigate negative emotional effects: pre-briefing, debriefing and interpreter/provider training. Conclusion: Professional interpreters experience myriad emotional responses to palliative conversations. Role clarity, collaborative working and formal training may alleviate negative effects

"Palliative care is so much more than that” : a qualitative study exploring experiences of hospice staff and bereaved carers during the COVID-19 pandemic

Background: The way in which end-of-life care was provided changed significantly during the first 2 years of the COVID-19 pandemic. The national lockdown restrictions reduced formal care support services and increased the burden on many carers taking on the caring role for the first time. We aimed to explore decision-making about the place of care during the COVID-19 pandemic and the impact on experience from the perspectives of carers and hospice staff caring for people at the end-of-life. Methods: A qualitative study using virtual interviews was conducted between October 2020 and April 2021. Data were analyzed thematically using framework analysis, an analytical framework that enables qualitative research to be organized into defined themes derived from the research question. Findings were presented to stakeholders in policy roundtables between March 2022 and March 2023 and discussed collaboratively with staff, stakeholders, and the public to inform policy and practice change. Findings: A total of 37 participants (15 bereaved carers and 22 staff) were recruited via hospice services in England and Scotland. Four key themes were identified: (1) changing preferences relating to decision-making about the place of care and the impact at the time of death and into bereavement; (2) missed opportunities related to not being there, not having others around, and being robbed of memory-making; (3) the lone carer during a period of high intensity and reduced home support; (4) process vs. person-centered care resulting from changing rules and restrictions and prioritization of regulations over essential palliative care. Conclusion: The study provides valuable global implications for all involved in end-of-life care. Despite great efforts to provide dignified, quality care, palliative care during the pandemic changed, focusing on essential ‘physical care'. The psychological suffering experienced by staff and carers may need longer-term support mechanisms put in place, which will benefit from a public health approach. Policymakers should consider improving carer identification and resources for wider end-of-life care education to support the needs of carers, health and social care staff, and citizens

The impact of Covid-19 pandemic on hospices : a systematic integrated review and synthesis of recommendations for policy and practice

Background: The Covid-19 pandemic resulted in the development of numerous recommendations for practice and policy for specialist palliative care provided by hospices in United Kingdom (UK), as hospices were significantly affected by the pandemic and protections put in place. The aim of this review is to identify and synthesise recommendations or implications for policy and practice that have been generated for adult hospice specialist palliative care during the first 24 months of the Covid-19 pandemic. Methods: AMED, BNI, CINAHL, EMBASE, EMCARE, HMIC, Medline, PsycINFO, PubMed databases were searched for peer-reviewed papers, as well as hand searchers for grey literature. Literature relating to hospices and Covid-19 in the UK were included and a thematic synthesis of recommendations for hospice policy and practice was undertaken. Results: 858 articles were identified with 12 meeting the inclusion criteria. Fifty-eight recommendations or implications were identified: 31 for policy, 27 for practice, and 10 covering both. Recommendations were organised under ten themes. There were several recommendations seeking to secure hospice resources to mitigate the short-term impact of the pandemic, as well as those focused on longer-term implications such as core funding. The impact of the pandemic on the quality of hospice care was the focus for numerous recommendations around improving integration of hospice care in the community, provision of bereavement support and better use of Advance Care Plans (ACP). However, there were significant gaps related to carer visitation in hospices, inequities of palliative care, or hospice-at-home services. Conclusion: The Covid-19 pandemic and protections exposed several ongoing policy and practice needs, especially around hospice resources, while generating novel issues for hospices to address. Significant policy gaps remain to be addressed to mitigate the impact of the pandemic on the quality of hospice specialist palliative care