Patient preferences for the allocation of deceased donor kidneys for transplantation: a mixed methods study

<p>Abstract</p> <p>Background</p> <p>Deceased donor kidneys are a scarce health resource, yet patient preferences for organ allocation are largely unknown. The aim of this study was to determine patient preferences for how kidneys should be allocated for transplantation.</p> <p>Methods</p> <p>Patients on dialysis and kidney transplant recipients were purposively selected from two centres in Australia to participate in nominal/focus groups in March 2011. Participants identified and ranked criteria they considered important for deceased donor kidney allocation. Transcripts were thematically analysed to identify reasons for their rankings.</p> <p>Results</p> <p>From six groups involving 37 participants, 23 criteria emerged. Most agreed that matching, wait-list time, medical urgency, likelihood of surviving surgery, age, comorbidities, duration of illness, quality of life, number of organs needed and impact on the recipient's life circumstances were important considerations. Underpinning their rankings were four main themes: enhancing life, medical priority, recipient valuation, and deservingness. These were predominantly expressed as achieving equity for all patients, or priority for specific sub-groups of potential recipients regarded as more "deserving".</p> <p>Conclusions</p> <p>Patients believed any wait-listed individual who would gain life expectancy and quality of life compared with dialysis should have access to transplantation. Equity of access to transplantation for all patients and justice for those who would look after their transplant were considered important. A utilitarian rationale based on maximizing health gains from the allocation of a scarce resource to avoid "wastage," were rarely expressed. Organ allocation organisations need to seek input from patients who can articulate preferences for allocation and advocate for equity and justice in organ allocation.</p

Chedoke Arm and Hand Activity Inventory-9 (CAHAI-9): Perceived clinical utility within 14 days of stroke

Purpose: The Chedoke Arm and Hand Activity Inventory-9 (CAHAI-9) is an activity-based assessment developed to include relevant functional tasks and to be sensitive to clinically important changes in upper limb function. The aim of this study was to explore both therapists' and clients' views on the clinical utility of CAHAI-9 within 14 days of stroke. Method: Twenty-one occupational therapists actively working in stroke settings were recruited by convenience sampling from 8 hospitals and participated in semistructured focus groups. Five clients within 14 days of stroke were recruited by consecutive sampling from 1 metropolitan hospital and participated in structured individual interviews. The transcripts were analyzed thematically. Results: Six themes emerged from the focus groups and interviews: collecting information, decisions regarding client suitability, administration and scoring, organizational demands, raising awareness, and clients' perceptions of CAHAI-9 utility. All therapists agreed CAHAI-9 was suited for the stroke population and assisted identification of client abilities or difficulties within functional contexts. Opinions varied as to whether CAHAI-9 should be routinely administered with clients who had mild and severe upper limb deficits, but therapists agreed it was appropriate for clients with moderate deficits. Therapists made suggestions regarding refinement of the scoring and training to increase utility. All clients with stroke felt that the assessment provided reassurance regarding their recovery. Conclusion: The findings indicate that CAHAI-9 shows promise as an upper limb ability assessment for clients within 14 days of stroke

The perceived meaning of a (w)holistic view among general practitioners and district nurses in Swedish primary care: a qualitative study

BACKGROUND: The definition of primary care varies between countries. Swedish primary care has developed from a philosophic viewpoint based on quality, accessibility, continuity, co-operation and a holistic view. The meaning of holism in international literature differs between medicine and nursing. The question is, if the difference is due to different educational traditions. Due to the uncertainties in defining holism and a holistic view we wished to study, in depth, how holism is perceived by doctors and nurses in their clinical work. Thus, the aim was to explore the perceived meaning of a holistic view among general practitioners (GPs) and district nurses (DNs). METHODS: Seven focus group interviews with a purposive sample of 22 GPs and 20 nurses working in primary care in two Swedish county councils were conducted. The interviews were transcribed verbatim and analysed using qualitative content analysis. RESULTS: The analysis resulted in three categories, attitude, knowledge, and circumstances, with two, two and four subcategories respectively. A professional attitude involves recognising the whole person; not only fragments of a person with a disease. Factual knowledge is acquired through special training and long professional experience. Tacit knowledge is about feelings and social competence. Circumstances can either be barriers or facilitators. A holistic view is a strong motivator and as such it is a facilitator. The way primary care is organised can be either a barrier or a facilitator and could influence the use of a holistic approach. Defined geographical districts and care teams facilitate a holistic view with house calls being essential, particularly for nurses. In preventive work and palliative care, a holistic view was stated to be specifically important. Consultations and communication with the patient were seen as important tools. CONCLUSION: 'Holistic view' is multidimensional, well implemented and very much alive among both GPs and DNs. The word holistic should really be spelt 'wholistic' to avoid confusion with complementary and alternative medicine. It was obvious that our participants were able to verbalise the meaning of a 'wholistic' view through narratives about their clinical, every day work. The possibility to implement a 'wholistic' perspective in their work with patients offers a strong motivation for GPs and DNs

Priority setting in primary health care - dilemmas and opportunities: a focus group study

<p>Abstract</p> <p>Background</p> <p>Swedish health care authorities use three key criteria to produce national guidelines for local priority setting: severity of the health condition, expected patient benefit, and cost-effectiveness of medical intervention. Priority setting in primary health care (PHC) has significant implications for health costs and outcomes in the health care system. Nevertheless, these guidelines have been implemented to a very limited degree in PHC. The objective of the study was to qualitatively assess how general practitioners (GPs) and nurses perceive the application of the three key priority-setting criteria.</p> <p>Methods</p> <p>Focus groups were held with GPs and nurses at primary health care centres, where the staff had a short period of experience in using the criteria for prioritising in their daily work.</p> <p>Results</p> <p>The staff found the three key priority-setting criteria (severity, patient benefit, and cost-effectiveness) to be valuable for priority setting in PHC. However, when the criteria were applied in PHC, three additional dimensions were identified: 1) viewpoint (medical or patient's), 2) timeframe (now or later), and 3) evidence level (group or individual).</p> <p>Conclusions</p> <p>The three key priority-setting criteria were useful. Considering the three additional dimensions might enhance implementation of national guidelines in PHC and is probably a prerequisite for the criteria to be useful in priority setting for individual patients.</p

Evidence-based patient choice: a prostate cancer decision aid in plain language

BACKGROUND: Decision aids (DA) to assist patients in evaluating treatment options and sharing in decision making have proliferated in recent years. Most require high literacy and do not use plain language principles. We describe one of the first attempts to design a decision aid using principles from reading research and document design. The plain language DA prototype addressed treatment decisions for localized prostate cancer. Evaluation assessed impact on knowledge, decisions, and discussions with doctors in men newly diagnosed with prostate cancer. METHODS: Document development steps included preparing an evidence-based DA in standard medical parlance, iteratively translating it to emphasize shared decision making and plain language in three formats (booklet, Internet, and audio-tape). Scientific review of medical content was integrated with expert health literacy review of document structure and design. Formative evaluation methods included focus groups (n = 4) and survey of a new sample of men newly diagnosed with prostate cancer (n = 60), compared with historical controls (n = 184). RESULTS: A transparent description of the development process and design elements is reported. Formative evaluation among newly diagnosed prostate cancer patients found the DA to be clear and useful in reaching a decision. Newly diagnosed patients reported more discussions with doctors about treatment options, and showed increases in knowledge of side effects of radiation therapy. CONCLUSION: The plain language DA presenting medical evidence in text and numerical formats appears acceptable and useful in decision-making about localized prostate cancer treatment. Further testing should evaluate the impact of all three media on decisions made and quality of life in the survivorship period, especially among very low literacy men

Integrating evidence into policy and sustainable disability services delivery in western New South Wales, Australia: the 'wobbly hub and double spokes' project

<p>Abstract</p> <p>Background</p> <p>Policy that supports rural allied health service delivery is important given the shortage of services outside of Australian metropolitan centres. The shortage of allied health professionals means that rural clinicians work long hours and have little peer or service support. Service delivery to rural and remote communities is further complicated because relatively small numbers of clients are dispersed over large geographic areas. The aim of this five-year multi-stage project is to generate evidence to confirm and develop evidence-based policies and to evaluate their implementation in procedures that allow a regional allied health workforce to more expeditiously respond to disability service need in regional New South Wales, Australia.</p> <p>Methods/Design</p> <p>The project consists of four inter-related stages that together constitute a full policy cycle. It uses mixed quantitative and qualitative methods, guided by key policy concerns such as: access, complexity, cost, distribution of benefits, timeliness, effectiveness, equity, policy consistency, and community and political acceptability.</p> <p>Stage 1 adopts a policy analysis approach in which existing relevant policies and related documentation will be collected and reviewed. Policy-makers and senior managers within the region and in central offices will be interviewed about issues that influence policy development and implementation.</p> <p>Stage 2 uses a mixed methods approach to collecting information from allied health professionals, clients, and carers. Focus groups and interviews will explore issues related to providing and receiving allied health services. Discrete Choice Experiments will elicit staff and client/carer preferences.</p> <p>Stage 3 synthesises Stage 1 and 2 findings with reference to the key policy issues to develop and implement policies and procedures to establish several innovative regional workforce and service provision projects.</p> <p>Stage 4 uses mixed methods to monitor and evaluate the implementation and impact of new or adapted policies that arise from the preceding stages.</p> <p>Discussion</p> <p>The project will provide policy makers with research evidence to support consideration of the complex balance between: (i) the equitable allocation of scarce resources; (ii) the intent of current eligibility and prioritisation policies; (iii) workforce constraints (and strengths); and (iv) the most effective, evidence-based clinical practice.</p

Viewpoints of pedestrians with and without cognitive impairment on shared zones and zebra crossings

Background: Shared zones are characterised by an absence of traditional markers that segregate the road and footpath. Negotiation of a shared zone relies on an individual’s ability to perceive, assess and respond to environmental cues. This ability may be impacted by impairments in cognitive processing, which may lead to individuals experiencing increased anxiety when negotiating a shared zone. Method: Q method was used in order to identify and explore the viewpoints of pedestrians, with and without cognitive impairments as they pertain to shared zones. Results: Two viewpoints were revealed. Viewpoint one was defined by “confident users” while viewpoint two was defined by users who “know what [they] are doing but drivers might not”. Discussion: Overall, participants in the study would not avoid shared zones. Pedestrians with intellectual disability were, however, not well represented by either viewpoint, suggesting that shared zones may pose a potential barrier to participation for this group

Community Reentry: Perceptions of People with Substance Use Problems Returning Home from New York City Jails

Each year about 100,000 people return to New York City communities from municipal jails. Although about four-fifths report drug or alcohol problems, few have received any formal drug treatment while in jail. Researchers and practitioners have identified a number of policies related to corrections, income, housing, and drug treatment that may be harmful to the successful reintegration of people leaving jail. In order to explore the challenges to successful community reentry, six focus groups and one in-depth interview were conducted with 37 men and women who had been released from jail or prison in the last 12 months. Participants were asked to describe their experiences prior to and immediately following release from jail. Findings suggest that many people leaving jail are not prepared for release and, upon release, face a myriad of obstacles to becoming healthy, productive members of their communities. We discuss the implications of these findings for programs and policies that promote community reintegration of individuals returning from correctional facilities.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/40303/2/Van Olphen_Community Reentry - Perceptions of People_2006.pd

Localized practices and globalized futures: challenges for Alaska coastal community youth

An article from Maritime Studies (2015) 14: