Agency in the context of social death: dying alone at home

Each year a number of bodies are found of people who have died alone at home and whose absence from daily life has not been noticed. Media reports tend either to cast these individuals as deviant, or wider society as having abandoned them to a lonely death. This paper proposes an alternative view, one in which some individuals choose to withdraw from society and enter a period of social death prior to their biological deaths. They may then be subject to a renewed social life after death, brought about through post-death social processes. The paper begins by laying out the background to the pilot study on which it draws, before discussing some of the methodological and ethical issues involved in carrying out such research. A case study is then presented as a focus for a discussion of the possible role of agency and choice within the context of social death

Moral ambiguity in media reports of dying alone

More older people are living alone in the UK, thereby increasing the prospect of dying alone at home. Lone deaths tend to be regarded as bad deaths, in that they contravene notions of accompaniment and open awareness espoused in UK end of life care policies. We describe a media analysis of dying alone conducted in two phases. First, we revisited a previous media analysis to examine whether news reporting of dying alone has changed. Second, we focussed on a single case study to explore how an account of a lone death unfolded during the days following its discovery. We found that dying alone remains a threat to individual and collective moral reputations. However, we also identified reports in which dying alone was presented as acceptable in some circumstances, and as congruent with aspects of a good death. We suggest that dying alone can be made good through media reporting, reflecting the individual choice and autonomy associated with a good death. There is potential for news media to revise cultural scripts of dying, largely based on the experiences of people dying under medical supervision

Death as a Fateful Moment? The Reflexive Individual and Scottish Funeral Practices

Abstract Death is considered by some commentators to be problematic for the inhabitants of a late modern era, so that when individuals are confronted by death they revert to using traditional institutions and practices. This paper draws on sociological research exploring Scottish funeral practices to consider whether this is the case, or whether individuals are able to employ a process of self-reflexivity even when they are planning the funeral of someone about whom they cared. Two funerals are described in the article, and the suggestion is made that their organisers behaved some of the time as reflexive individuals as well as also making use of the traditional authorities of modernity, such as the family and church

‘My wife is my doctor at home’: A qualitative study exploring the challenges of home-based palliative care in a resource-poor setting

© The Author(s) 2020. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. Design: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. Participants: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). Findings: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care. Conclusion: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.Peer reviewedFinal Published versio

Exploring caregivers’ experiences of caring for men with advanced prostate cancer in a resource-poor setting: a qualitative serial interview study

Background: Family caregivers who assume the responsibility of care for patients living with advanced diseases could have challenges especially in resource-poor settings. The bulk and responsibility for care are predominantly provided by the family caregivers within the informal sector. The family caregivers, therefore, could be described as the ‘general practitioners’ of the patients at home. Using a qualitative study, the experiences of the family caregivers caring for men with advanced prostate cancer were explored. Methods: Using serial qualitative approach, 23 in-depth individual and dyad interviews were conducted. Patients and their caregivers participated in repeat interviews approximately 2 months apart, across a period of up to 6 months. Transcribed interviews were analysed using thematic analysis. Findings: This paper focuses on the experiences of family caregivers in the light of inadequate resources for care. Two main themes emerged from the data: Challenges and burden of care, and the support and coping strategies adopted. The family caregivers expressed the overburden nature of the care, ‘feeling of being alone in the middle of a deep sea’, disruption of their lives, and unhappiness and the fear of an unknown future. On the other hand, they rely on the support of the social network of the extended family, their faith in God, and the positive aspect of living helped to mitigate some of the challenges. The belief in reciprocity and ‘giving back’ through caring for their loved ones were highlighted by participants. Conclusion: Generally, the informal social network helped in the care at home. However, the magnitude of the adverse changes in their lives and challenges associated with the caring role was dependent on factors such as the level of care required, financial and other resources available, and the coping mechanisms in place. Efforts to enhance existing social support systems are recommended

‘Out of the frying pan into the fire’: a qualitative study of the impact on masculinity for men living with advanced prostate cancer

© The Author(s), 2023. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/)Background: Studies have highlighted how advanced prostate cancer causes biographical disruption and presents challenges to masculine identities for men. This article draws on a wider study that focused on the experiences of men living with advanced prostate cancer and their caregivers. Although men’s experience of advanced illness is not overlooked in the literature, only a small body of work has taken an in-depth look at men’s experiences with advanced prostate cancer and their caregivers in a non-Westernised cultural and social context. Objective:: To explore how advanced prostate cancer impacts on men’s masculine identity from the perspective of patients and their caregivers. Methods:: A qualitative study of men living with advanced prostate cancer (n = 23) and family caregivers (n = 23) in Ghana. We used the Consolidated Criteria for Reporting Qualitative Studies (COREQ) as the reporting guideline. Results:: The findings from this study highlight profound challenges for most men to their masculine identities, from both the treatment and the symptoms of advanced prostate cancer within a non-Westernised, patriarchal society. Four main themes were developed. These were the impact on masculinity in terms of: (1) physical changes, (2) sexual ability, (3) socio-economic roles and (4) expressing emotions. Changes in physical appearance, feeling belittled, having no active sexual life and the inability to continue acting as provider and protector of the family made some men describe their situation as one of moving out of the ‘frying pan into the fire’. Conclusion:: This study revealed the impact of advanced prostate cancer on masculine identity. These narratives add a new dimension to what is already known about the impacts on men’s masculine identities when dealing with advanced prostate cancer. This knowledge can help improve the care provided to men with advanced prostate cancer with emphasis on the cultures, beliefs and aspirations of these men and their caregivers. Objective: To explore how advanced prostate cancer impacts on men’s masculine identity from the perspective of patients and their caregivers. Methods: A qualitative study of men living with advanced prostate cancer (n = 23) and family caregivers (n = 23) in Ghana. We used the Consolidated Criteria for Reporting Qualitative Studies (COREQ) as the reporting guideline. Results: The findings from this study highlight profound challenges for most men to their masculine identities, from both the treatment and the symptoms of advanced prostate cancer within a non-Westernised, patriarchal society. Four main themes were developed. These were the impact on masculinity in terms of: (1) physical changes, (2) sexual ability, (3) socio-economic roles and (4) expressing emotions. Changes in physical appearance, feeling belittled, having no active sexual life and the inability to continue acting as provider and protector of the family made some men describe their situation as one of moving out of the ‘frying pan into the fire’. Conclusion: This study revealed the impact of advanced prostate cancer on masculine identity. These narratives add a new dimension to what is already known about the impacts on men’s masculine identities when dealing with advanced prostate cancer. This knowledge can help improve the care provided to men with advanced prostate cancer with emphasis on the cultures, beliefs and aspirations of these men and their caregivers.Peer reviewe

‘I’ve no fear of dying alone’: exploring perspectives on living and dying alone

Dying alone is portrayed as undesirable in terms of policy, health and social care provision, the wishes of family and friends, and in popular culture. Despite this, people do often die alone, both in institutional and domestic settings. This paper reports findings from a study which explored ways of investigating individuals’ perspectives on dying alone at home. It tested methods of recruitment and data collection, gathered preliminary data and explored the ethical issues involved. Interviews with 11 older people living alone and seven hospice at home nurses are reported here. For the older people, the idea of dying alone was less problematic than the idea of needing care and support from others, and the perceived loss of independence that this would entail. Participants reacted in differing ways to threats to their independence, but all utilised a form of relational reflexivity when considering the effect their actions might have on others. The nurses would prefer no one to die alone, but believed they had seen patients managing their own dying so that they could be alone at the moment of death. The paper suggests that dying alone may be a problem for survivors, rather than for the person who is dying

‘I’ve no fear of dying alone’: exploring perspectives on living and dying alone

Dying alone is portrayed as undesirable in terms of policy, health and social care provision, the wishes of family and friends, and in popular culture. Despite this, people do often die alone, both in institutional and domestic settings. This paper reports findings from a study which explored ways of investigating individuals’ perspectives on dying alone at home. It tested methods of recruitment and data collection, gathered preliminary data and explored the ethical issues involved. Interviews with 11 older people living alone and seven hospice at home nurses are reported here. For the older people, the idea of dying alone was less problematic than the idea of needing care and support from others, and the perceived loss of independence that this would entail. Participants reacted in differing ways to threats to their independence, but all utilised a form of relational reflexivity when considering the effect their actions might have on others. The nurses would prefer no one to die alone, but believed they had seen patients managing their own dying so that they could be alone at the moment of death. The paper suggests that dying alone may be a problem for survivors, rather than for the person who is dying

Agency in the context of social death: dying alone at home

Each year a number of bodies are found of people who have died alone at home and whose absence from daily life has not been noticed. Media reports tend either to cast these individuals as deviant, or wider society as having abandoned them to a lonely death. This paper proposes an alternative view, one in which some individuals choose to withdraw from society and enter a period of social death prior to their biological deaths. They may then be subject to a renewed social life after death, brought about through post-death social processes. The paper begins by laying out the background to the pilot study on which it draws, before discussing some of the methodological and ethical issues involved in carrying out such research. A case study is then presented as a focus for a discussion of the possible role of agency and choice within the context of social death

Saudi service users’ perceptions and experiences of the quality of their mental health care provision in the Kingdom of Saudi Arabia (KSA): A qualitative inquiry

© 2020 The Authors. International Journal of Mental Health Nursing published by John Wiley & Sons Australia, Ltd on behalf of Australian College of Mental Health Nurses Inc This paper presents, as part of a larger mixed-methods design, a study generating a theoretical understanding of issues pertinent to the quality of mental health care in the KSA from the perspective of those using services. Semi-structured interviews were undertaken with thirty service users admitted to inpatient psychiatric wards, using an interview guide developed by the researchers, based on relevant literature. Findings from the thematic analysis showed five themes: (1) The hospital as a prison: a custody versus care dilemma, (2) quality of interactions between staff and service users, (3) quality of services, (4) staff qualities and (5) suggestions for achieving quality of care. A theoretical model drawing upon Donabedian Health Care Model for Evaluating quality of care and the Andersen Behavioural Model of Health Service Use is evident from the data. Structural aspects of care include staff experience and qualifications and key enablers around social and financial support, service users’ health needs and status and the physical infrastructure and ward rules. These drive processes of care based upon robust rates of interaction between staff and service users and appear central to quality of mental health care in KSA. Quality of mental health care in KSA is manifested by a therapeutic ethos with a high degree of interaction between professional carers and service users, with the former being highly educated, competent, compassionate, with a high degree of self-awareness, and specialized in mental health. We have uncovered elements of Fanon and Azoulay’s ‘Cultural Originality’ as well as contemporary examples of Goffman’s mortification of the self