BackgroundPre-dialysis education (PDE) is provided to thousands of patients every year, helping them decide which renal replacement therapy (RRT) to choose. However, its effectiveness is largely unknown, with relatively little previous research into patients’ views about PDE, and no research into staff views. This study reports findings relevant to PDE from a larger mixed methods study, providing insights into what staff and patients think needs to improve.MethodsSemi-structured interviews in four hospitals with 96 clinical and managerial staff and 93 dialysis patients, exploring experiences of and views about PDE, and analysed using thematic framework analysis.ResultsMost patients found PDE helpful and staff valued its role in supporting patient decision-making. However, patients wanted to see teaching methods and materials improve and biases eliminated. Staff were less aware than patients of how informal staff-patient conversations can influence patients’ treatment decision-making. Many staff felt ill equipped to talk about all treatment options in a balanced and unbiased way. Patient decision-making was found to be complex and patients’ abilities to make treatment decisions were adversely affected in the pre-dialysis period by emotional distress.ConclusionsSuggested improvements to teaching methods and educational materials are in line with previous studies and current clinical guidelines. All staff, irrespective of their role, need to be trained about all treatment options so that informal conversations with patients are not biased. The study argues for a more individualised approach to PDE which is more like counselling than education and would demand a higher level of skill and training for specialist PDE staff. The study concludes that even if these improvements are made to PDE, not all patients will benefit, because some find decision-making in the pre-dialysis period too complex or are unable to engage with education due to illness or emotional distress. It is therefore recommended that pre-dialysis treatment decisions are temporary, and that PDE is replaced with on-going RRT education which provides opportunities for personalised education and on-going review of patients’ treatment choices. Emotional support to help overcome the distress of the transition to end-stage renal disease will also be essential to ensure all patients can benefit from RRT education.
BackgroundDespite healthcare policies and evidence which promote home dialysis, uptake rates have been falling for over 10 years in England. A target introduced by commissioners in the West Midlands provided a unique opportunity to study how hospitals can increase home-based treatment for a group of patients with complex life-threatening conditions.MethodsQuantitative changes in home treatment uptake rates in seven hospitals in the West Midlands were compared with the rest of England for 3 years pre and post the introduction of the target in 2010, using a logistic regression model. Qualitative interviews in four hospitals with 96 clinical and managerial staff and 93 dialysis patients explored the barriers and facilitators to increasing the uptake of home treatment and the impact of the target.ResultsHome treatment uptake rates increased significantly in the seven study hospitals compared with the 3 years prior to the introduction of the target and compared with the rest of England where rates remained static. The four main factors facilitating increased uptake were as follows: the commissioner’s target, linked to financial penalties; additional funding for specialist staff and equipment; committed, visible clinical champions and good systems for patient training and ongoing healthcare support at home. The three main barriers were as follows: lack of training for non-specialist staff, poorly developed patient education and considerable unrecognised and unmet emotional and psychological patient needs.ConclusionsThis study shows the impact of using targets with financial penalties to achieve change and how hospitals can increase significantly the uptake of home-based self-care for a group of patients with complex medical needs. It provides useful pointers to the main barriers and facilitators, which are likely to be relevant to other groups of patients who could be treated at home. It also highlights two neglected areas which need to improve if patients with life-threatening long-term conditions are to be encouraged to take up home treatment: individualised patient education which allows exploration of the impacts of treatment options and the provision of ongoing emotional support.
Public sector organisations are facing one of the most difficult financial periods in history and local decision-makers are tasked with making tough rationing decisions. Withdrawing or limiting services is an emotive and complex task and something the National Health Service has always found difficult. Over time, local authorities have gained significant experience in the closure of care homes - an equally complex and controversial issue. Drawing on local knowledge and best practice examples, this article highlights lessons and themes identified by those decommissioning care home services. We believe that such lessons are relevant to those making disinvestment decisions across public sector services, including health-care. The study employed semi-structured interviews with 12 Directors of Adult Social Services who had been highlighted nationally as having extensive experience of home closures. Interviews were conducted over a 2-week period in March 2011. Results from the study found that having local policy guidance that is perceived as fair and reasonable was advocated by those involved in home closures. Many local policies had evolved over time and had often been developed following experiences of home closures (both good and bad). Decisions to close care home services require a combination of strong leadership, clear strategic goals, a fair decision-making process, strong evidence of the need for change and good communication, alongside wider stakeholder engagement and support. The current financial challenge means that public sector organisations need to make tough choices on investment and disinvestment decisions. Any such decisions need to be influenced by what we know constitutes best practice. Sharing lessons and experiences within and between sectors could well inform and develop decision-making practices.
With care services increasingly delivered via a market there is always a risk that care homes could fail financially or struggle in terms of quality, ultimately having to close.When this happens, the received wisdom is that subsequent relocation can be detrimental to the health and well-being of older residents (possibly even culminating in increased mortality). However, there is very little formal evidence in the United Kingdom (UK) or beyond to guide policymakers and local leaders when undertaking such sensitive work.Against this background, this article reports findings from an independent evaluation of what is believed to be the largest care home closure program in the UK (and possibly beyond). This consisted of qualitative interviews with older people, families, care staff, and social work assessors during the closure process in one case study care home and one linked day center, as well as self-reported health and quality of life data for older people from 13 homes/linked day centers at initial assessment, 28 days after moving and at 12-month follow up. The study is significant in presenting public data about such a contested topic from such a large-scale closure process, in its focus on both process and outcomes, in its mixed-methods approach, and in its engagement with older people, families, and care staff alongside the use of more formal outcome measures. Despite significant distress part-way through the process,This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
ObjectiveTo explore why transplant patients experience unexpected mild-to-moderate distress and what support they may need.DesignQualitative study using individual in-depth interviews.SettingFour National Health Service (NHS) Trusts in the Midlands, UK.ParticipantsFifteen renal transplant patients meeting the criteria for mild-to-moderate distress from their responses to emotion thermometers.Main outcome measuresIdentification of the reasons for distress and support options acceptable to renal transplant patients.ResultsThree themes were interpreted from the data: ‘I am living with a “foreign body” inside me’, ‘why am I distressed?’ and ‘different patients want different support’. Following their transplant, participants felt that they should be happy and content, but this was often not the case. They described a range of feelings about their transplant, such as uncertainty about the lifespan of their new kidney, fear of transplant failure or fear of the donor having health conditions that may transfer to them. A few experienced survivors’ guilt when others they had met at the dialysis unit had not received a transplant or because someone had died to enable them to receive the transplant. No longer having regular contact with the renal unit made participants feel isolated. Some participants did not initially attribute the source of their distress to their transplant. Participants’ preferred support for their distress and their preferences about who should deliver it varied from peer support to seeing a psychologist.ConclusionsRaising the issue of post-transplant mild-to-moderate distress with patients and encouraging them to think about and plan coping strategies pretransplant may prove beneficial for the patient and healthcare provider. Patients should be able to choose from a variety of support options.
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