Recovering normal: A qualitative study of grief following bereavement

This thesis explores the notion of 'recovery' from grief following bereavement and answers the question, what happens when people 'fail' to recover? Researchers and practitioners promote a linear, staged, 'normal course' of grief, yet people who fail to follow this course are understood as experiencing 'complicated grief': a form of psychiatric disorder. In particular, the thesis explores the debates and issues around the highly contested notion of recovery from grief, drawing on an analysis of the theory and policy of grief and recovery, and empirical qualitative interview data from bereavement care practitioners and bereaved people in England. Arguing for the acknowledgment of the experience of 'non-recovery', this thesis draws on a Foucauldian approach to problematise the notion of recovery, highlighting how 'recovery' is a socially constructed notion linked to the individualised vision of health and happiness promoted by neoliberal governmentality. The study concentrates on three areas: the political and cultural factors that 'frame' grief and recovery in England; how grief is managed, through the example of bereavement counselling, and the ways in which bereaved people make sense of grief. The findings of this study present the experience of grief as one of navigating a 'liminal space'. Recovery from grief was achieved or resisted through the negotiation of a variety of political, medical and social discourses. These discourses provided guidelines for the bereaved person, where they were encouraged to make sense of grief, engage in certain practices and work towards the building of new identities, in order to recover from grief. Further, through the incorporation of 'non-recovery' this study proposes an alternative way of theorising grief, arguing for the need to emphasise the relational and embodied aspects of grief

The Crises and Freedoms of Researching Your Own Life

There has been much work highlighting the benefits of autoethnographic research yet little acknowledgement of the demands researching your own life makes on the emotional and mental wellbeing of the researcher. This paper explores the consequences that can arise as a result of autoethnographic research by detailing the crises involved in researching a topic that the researcher has experienced herself. This paper discusses the re-emergence of my grief over the death of my mother as I researched into the experience of other young women who had experienced the death of their mother during their youth. The research process was a journey in which crises were experienced that conflicted and illuminated the emerging findings of the research. The role of the researcher and the researcher’s subjectivity--emotions, feelings, actions--are highlighted as integral to research practice. Accepting vulnerability and problematic feelings and emotions can be seen both as an important part of grieving the loss of a mother but also a significant step in conducting research and being a researcher

Recovering the body in grief: Physical absence and embodied presence.

This paper addresses the complex issue of the embodiment of grief. It explores how a theoretical shift to the body has influenced scholarly literature about grief and bereavement. Despite this shift, we argue that bodily interpretations and experiences are undertheorised in western psychological literature on bereavement. Specifically, we argue that linear stage models of grief have encouraged the view that grief needs 'working through' in the mind, and not necessarily the body. We draw on empirical data from interviews with bereaved people undertaken in England to illustrate aspects of the embodied experience of grief that differ from how psychological grief theories conceive of the bereaved person's body. Findings highlight the role of the bereaved person's body in managing grief and how the absence and continuing presence of the deceased person is managed through embodied practices. We conclude that understanding grief as an embodied experience can enable the development of grief theories that better capture the complex negotiation between the psychological processes of grief and the materiality of bodies

‘Being there’ is what matters:Methodological and ethical challenges when undertaking research on the outdoor environment with older people during and beyond the COVID-19 pandemic

This paper reflects on adapting research methods and processes during the COVID-19 pandemic, drawing on our experiences of conducting research on the outdoor environment with older people (aged 50+) living in Scotland. First, we discuss the challenges to the organisation of research experienced in the context of changing government and university guidelines and managing delays to planned research timelines. The shift toward remote methods stimulated by the pandemic transformed traditional notions of the research field. We consider some of the implications of this for outdoor environment research, grounded as it is on exploring the interaction between people and the places they are embedded within. Further, despite a growth of literature highlighting the benefits of remote research, we found uses for digital and online approaches limited when working with older people. Second, we reflect on whether research with older people in the context of a pandemic can be conducted ethically. Drawing on our research we describe how developing an ‘ethics of care’ included negotiating with formal ethics processes but also the relational, situated ethics of qualitative health research that, because of the pandemic, had begun to shift in new ways. We describe the often intangible impacts of COVID-19 such as social isolation and bereavement that we uncovered as researchers entering into the lives of older people. In closing, we outline some of the key lessons learnt from conducting research on outdoor environments with older people to enable future qualitative health research during and beyond the pandemic

Supporting bereavement and complicated grief in primary care: a realist review.

BACKGROUND: Bereavement can have significant impacts on physical and mental health, and a minority of people experience complicated and prolonged grief responses. Primary care is ideally situated to offer bereavement care, yet UK provision remains variable and practitioners feel uncertain how best to support bereaved patients. AIM: To identify what works, how, and for whom, in the management of complicated grief (CG) in primary care. DESIGN & SETTING: A review of evidence on the management of CG and bereavement in UK primary care settings. METHOD: A realist approach was taken that aims to provide causal explanations through the generation and articulation of contexts, mechanisms, and outcomes. RESULTS: Forty-two articles were included. Evidence on the primary care management of complicated or prolonged grief was limited. GPs and nurses view bereavement support as part of their role, yet experience uncertainty over the appropriate extent of their involvement. Patients and clinicians often have differing views on the role of primary care in bereavement. Training in bereavement, local systems for reporting deaths, practitioner time, and resources can assist or hinder bereavement care provision. Practitioners find bereavement care can be emotionally challenging. Understanding patients' needs can encourage a proactive response and help identify appropriate support. CONCLUSION: Bereavement care in primary care remains variable and practitioners feel unprepared to provide appropriate bereavement care. Patients at higher risk of complicated or prolonged grief may fail to receive the support they need from primary care. Further research is required to address the potential unmet needs of bereaved patients

Delivering genomic medicine in the United Kingdom National Health Service:a systematic review and narrative synthesis

PURPOSE: We sought to assess the readiness of the United Kingdom (UK) National Health Service to implement a Genomic Medicine Service. We conducted a systematic literature review to identify what is known about factors related to the implementation of genomic medicine in routine health care and to draw out the implications for the UK and other settings. METHODS: Relevant studies were identified in Web of Science and PubMed from their date of inception to April 2018. The review included primary research studies using quantitative, qualitative, or mixed methods, and systematic reviews. A narrative synthesis was conducted. RESULTS: Fifty-five studies met our inclusion criteria. The majority of studies reviewed were conducted in the United States. We identified four domains: (1) systems, (2) training and workforce needs, (3) professional attitudes and values, and (4) the role of patients and the public. CONCLUSION: Mainstreaming genomic medicine into routine clinical practice requires actions at each level of the health-care system. Our synthesis emphasized the organizational, social, and cultural implications of reforming practice, highlighting that demonstration of clinical utility and cost-effectiveness, attending to the compatibility of genomic medicine with clinical principles, and involving and engaging patients are key to successful implementation

A genome-wide association for kidney function and endocrine-related traits in the NHLBI's Framingham Heart Study

<p>Abstract</p> <p>Background</p> <p>Glomerular filtration rate (GFR) and urinary albumin excretion (UAE) are markers of kidney function that are known to be heritable. Many endocrine conditions have strong familial components. We tested for association between the Affymetrix GeneChip Human Mapping 100K single nucleotide polymorphism (SNP) set and measures of kidney function and endocrine traits.</p> <p>Methods</p> <p>Genotype information on the Affymetrix GeneChip Human Mapping 100K SNP set was available on 1345 participants. Serum creatinine and cystatin-C (cysC; n = 981) were measured at the seventh examination cycle (1998–2001); GFR (n = 1010) was estimated via the Modification of Diet in Renal Disease (MDRD) equation; UAE was measured on spot urine samples during the sixth examination cycle (1995–1998) and was indexed to urinary creatinine (n = 822). Thyroid stimulating hormone (TSH) was measured at the third and fourth examination cycles (1981–1984; 1984–1987) and mean value of the measurements were used (n = 810). Age-sex-adjusted and multivariable-adjusted residuals for these measurements were used in association with genotype data using generalized estimating equations (GEE) and family-based association tests (FBAT) models. We presented the results for association tests using additive allele model. We evaluated associations with 70,987 SNPs on autosomes with minor allele frequencies of at least 0.10, Hardy-Weinberg Equilibrium p-value ≥ 0.001, and call rates of at least 80%.</p> <p>Results</p> <p>The top SNPs associated with these traits using the GEE method were rs2839235 with GFR (p-value 1.6*10^-05), rs1158167 with cysC (p-value 8.5*10^-09), rs1712790 with UAE (p-value 1.9*10^-06), and rs6977660 with TSH (p-value 3.7*10^-06), respectively. The top SNPs associated with these traits using the FBAT method were rs6434804 with GFR(p-value 2.4*10^-5), rs563754 with cysC (p-value 4.7*10^-5), rs1243400 with UAE (p-value 4.8*10^-6), and rs4128956 with TSH (p-value 3.6*10^-5), respectively. Detailed association test results can be found at <url>http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?id=phs000007</url>. Four SNPs in or near the <it>CST</it>3 gene were highly associated with cysC levels (p-value 8.5*10^-09to 0.007).</p> <p>Conclusion</p> <p>Kidney function traits and TSH are associated with SNPs on the Affymetrix GeneChip Human Mapping 100K SNP set. These data will serve as a valuable resource for replication as more SNPs associated with kidney function and endocrine traits are identified.</p

Analysis of six candidate genes as potential modifiers of disease expression in canine XLPRA1, a model for human X-linked retinitis pigmentosa 3

Purpose: Canine X-linked progressive retinal atrophy (XLPRA) is caused by mutations in RPGR exon ORF15, which is also a mutation hotspot in human X-linked retinitis pigmentosa 3 (RP3). The XLPRA1 form of disease has shown extensive phenotypic variability in a colony of dogs that all inherited the same mutant X-chromosome. This variability in onset and severity makes XLPRA1 a valuable model to use to identify genes influencing photoreceptors degeneration in dog and to elucidate molecular mechanisms underlying RP in its human homolog. In this study, RPGRIP1, RANBP2, NPM1, PDE6D, NPHP5, and ABCA4 genes were selected on the basis of interaction with RPGR or RPGRIP1 or their implication in related retinal diseases, and were investigated as candidate genetic modifiers of XLPRA1. Methods: A pedigree derived from an affected male dog outcrossed to unrelated normal mix bred or purebred females was used. Morphologic examination revealed phenotypic variability in the affected dogs characterized as mild, moderate, or severe. Single nucleotide polymorphisms (SNPs) and indel-containing markers spanning the entire genes were designed, based on the canine sequence and the Broad Institute SNP library, and genotyped on the pedigree. For each candidate gene, haplotypes were identified and their frequencies in severely and moderately affected dogs were compared to detect a putative correlation between a gene-specific haplotype(s), and severity level of the disease. Primers were derived from expressed sequence tags (ESTs) and predicted transcripts to assess the relative retinal expression of the six genes of interest in normal and affected retinas of different ages. Results: Four to seven haplotypes per gene were identified. None of the haplotypes of RPGRIP1, NPM1, PDE6D, NPHP5, RANBP2, and ABCA4 were found to co-segregate with the moderate or severe phenotype. No significant difference in the retinal expression levels of the candidate genes was observed between normal and affected dogs. Conclusions: The haplotype distribution of RPGRIP1, NPM1, PDE6D, NPHP5, RANBP2, and ABCA4 suggests these genes are not modifiers of the disease phenotype observed in the XLPRA1 pedigree. The RPGRORF15 stop mutation does not affect the retinal expression of these genes at the mRNA level in the pre-degenerate stage of disease, but no conclusions can be made at this time about changes that may occur at the protein level