General Practitioners’ perceptions of the stigma of dementia and the role of reciprocity

YesA qualitative exploration of the stigma of dementia reported that GPs described lack of reciprocity as one way in which people with dementia are perceived within society. This was closely linked to their perception of dementia as a stigma. In this paper, we explore whether GPs perceive people with dementia as lacking reciprocity and, so, if this is linked with societal opinions about dementia as a stigma. The implications of both perceptions of people with dementia failing to reciprocate and of stigma for timely diagnosis are explored. GPs’ perceptions of societal views of people with dementia included a perception of a lack of reciprocity. Specifically, an absence of reciprocity was linked with; failing to respond to human contact, the absence of an appropriate return on social investment and failing to contribute to, or being a burden to, society. GPs reported a link between societal perceptions of lack of reciprocity and stereotypes about advanced dementia, difficulties communicating with people with dementia and lack of opportunities for people with dementia to reciprocate. GPs occupy a key position, they can challenge stereotypes and, with support and targeted training about communicating with people living with dementia, can emphasise the ways in which people with dementia can communicate, thereby enhancing their potential to reciprocate. Such changes have implications for improved care and quality of life through the continued maintenance of social inclusion and perceptions of personhood.non

Effect of a reduction in glomerular filtration rate after nephrectomy on arterial stiffness and central hemodynamics: rationale and design of the EARNEST study

Background: There is strong evidence of an association between chronic kidney disease (CKD) and cardiovascular disease. To date, however, proof that a reduction in glomerular filtration rate (GFR) is a causative factor in cardiovascular disease is lacking. Kidney donors comprise a highly screened population without risk factors such as diabetes and inflammation, which invariably confound the association between CKD and cardiovascular disease. There is strong evidence that increased arterial stiffness and left ventricular hypertrophy and fibrosis, rather than atherosclerotic disease, mediate the adverse cardiovascular effects of CKD. The expanding practice of live kidney donation provides a unique opportunity to study the cardiovascular effects of an isolated reduction in GFR in a prospective fashion. At the same time, the proposed study will address ongoing safety concerns that persist because most longitudinal outcome studies have been undertaken at single centers and compared donor cohorts with an inappropriately selected control group.<p></p> Hypotheses: The reduction in GFR accompanying uninephrectomy causes (1) a pressure-independent increase in aortic stiffness (aortic pulse wave velocity) and (2) an increase in peripheral and central blood pressure.<p></p> Methods: This is a prospective, multicenter, longitudinal, parallel group study of 440 living kidney donors and 440 healthy controls. All controls will be eligible for living kidney donation using current UK transplant criteria. Investigations will be performed at baseline and repeated at 12 months in the first instance. These include measurement of arterial stiffness using applanation tonometry to determine pulse wave velocity and pulse wave analysis, office blood pressure, 24-hour ambulatory blood pressure monitoring, and a series of biomarkers for cardiovascular and bone mineral disease.<p></p> Conclusions: These data will prove valuable by characterizing the direction of causality between cardiovascular and renal disease. This should help inform whether targeting reduced GFR alongside more traditional cardiovascular risk factors is warranted. In addition, this study will contribute important safety data on living kidney donors by providing a longitudinal assessment of well-validated surrogate markers of cardiovascular disease, namely, blood pressure and arterial stiffness. If any adverse effects are detected, these may be potentially reversed with the early introduction of targeted therapy. This should ensure that kidney donors do not come to long-term harm and thereby preserve the ongoing expansion of the living donor transplant program.<p></p&gt

Living with incontinence: The experience of people with dementia.

Dementia is a distressing condition in which individuals progressively require the support of others. Many people experience problems with incontinence and continence management. The presence of incontinence is influential in decisions for people with dementia to move into a care home. This study, in the interpretative tradition, investigates for the first time the person with dementia's perspective on these problems and their strategies for managing them. We conducted semi-structured conversational interviews with seven people with mild-to-moderate dementia and analysed the transcripts thematically. Our participants described both a variety of problems with incontinence and continence management, and their embarrassment and humiliation. Strategies included managing their presentation of self to others to keep such problems hidden, although it was evident that for some their cognitive problems led to strategies that were potentially problematic for others. In addition, some described the ways in which they acted to protect others, such as spouses, from the stigmatising effect of the incontinence

Sharing the care: The key working experiences of professionals and parents of life limited children.

Aims: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). Method: Using van Manen’s conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric palliative care professionals, and interviews were conducted with 20 parents of children with LLCs. Findings: Parents’ expectations for support were raised by the diagnosis, but the reality could disappoint, which put pressures on professionals. Current service designs with respect to key working did not always coincide with family preferences. Both parents and professionals found that the care journey required them to shift personas to respond to different contexts. Conclusions: The findings are limited by the sample characteristics, but they provide insight for current policy and practice initiatives. The key worker needs to be mindful of historical care arrangements and be prepared to step into the family ‘team’ arrangements. Key words: Children l Life-limiting conditions l Key-working l Family-centred care l Care planning l Qualitativ

"Quite an awkward situation to be in":perceptions of patients, carers and health and social care professionals of the supportive cancer care in British military personnel stationed in Germany

Goals of work: This paper reports findings from a study which identified the nature and volume of supportive care received by British military services personnel and their dependents who experience cancer and are based in Germany. The objectives were to (1) identify any gaps in the provision of supportive care, (2) determine the potential for additional supportive care services (local or remote), and (3) identify any educational or development issues for DMWS personnel. Materials and methods: Interviews and focus groups were conducted with people with cancer (n?=?7), informal carers (n?=?6), British health care professionals employed by British Forces in Germany (n?=?8), German health care professionals (n?=?3), senior military personnel (n?=?6) and army support personnel (n?=?5). Analysis of the data was thematic and focused on accounts of care related to core issue identified in the UK's National Institute of Health and Clinical Excellence (NICE) guidelines (24). Main results: The paper explores the difficulties which British military personnel experience in their cancer care. The shortfalls in best practice are discussed in the framework of NICE guidelines focusing on communication, information, psychosocial care and coordination of care/inter-agency working. Significant gaps in the supportive care service provision are apparent. Conclusions: The limited assessment and discussion of patients' supportive care needs suggests key areas for service improvement for providers both within the British Military in Germany, and in the services provided by German organisations. These findings highlight issues that should be considered by those providing supportive care for marginalised patient groups, such as patients and carers from different cultures