The great organ deficit a 21st century problem: What you can do to help.

Invited plenary presentatio

Screaming silences: lessons from the application of a new research framework

This paper presents the lessons learned from the application of a new research framework, The Silences Framework (Serrant-Green, 2011) in the context of a qualitative study exploring the fragility hip fracture recovery experiences of people under 60. Originating from research exploring ethnicity, gender and sexual health decisionmaking, this new framework provides a useful research tool for researching underrepresented groups and topics. It is likely to be attractive to nurses as it is underpinned by core nursing values such as advocacy based action, places participant and public voices at the centre of the research and resembles the familiar nursing process. The structure and flexibility it offers also make it relevant for new and experienced researchers in a variety of contexts. Current conceptions of marginalisation in healthcare are explored with reference to nursing research and practical tips are provided for others interested in applying and further testing this new research framework

Fragility hip fracture in the under 60s: a qualitative study of recovery experiences and the implications for nursing

Background: Hip fracture is a common, serious, complex injury and an important cause of morbidity, mortality and rising healthcare costs. Incidence and impact in the under 60s has been under researched. The aim of this study was therefore to explore the recovery experiences of young adults with an isolated hip fracture following a minor fall to inform future care delivery. Methods and Findings The Silences Framework was used to guide a critical interpretivist study. Thirty in-depth, minimally structured, story-telling interviews were conducted with participants between one and 10 years post injury. One cross-cutting theme, ‘Communication’ and four main themes: ‘Experience of care’, ’Impact on self’, ‘Impact on others’ and ‘Moving forward’ were identified. The findings indicated multi-faceted, often long term, physical, social and psychological impact on participants, their family and wider social networks. This included Post Traumatic Stress Disorder type symptoms and impact on work, finances and relationships. Inadequacies in the current care pathway and limited relevance of the commonly used patient reported hip fracture outcome measures used for young adults were also identified. Conclusion: The dominant discourse on fragility hip fracture almost exclusively focuses on the elderly and short-term outcomes. This was the first study investigating the long-term impact of fragility hip fracture in young adults from their perspective and the first application of a new research framework in an acute care setting. It found the needs of younger hip fracture patients are not adequately recognised or addressed. Increased awareness and improvements in healthcare provision are needed to minimise the long-term personal and societal impact of fragility fracture in the under 60s

RECOGNISING THE GIFT OF ORGAN AND TISSUE DONATION: AN EVIDENCE-BASED APPROACH

Poster presentation.Objectives 1. To describe the meaning of recognition for donor families. 2. To illustrate the creation of a public memorial, from conception to design. Method This presentation draws on the findings of a qualitative study, designed to elicit donor families’ views and preferences on appropriate ways of personally and publicly recognising the gift of organ and tissue donation. To our knowledge, this was one of the first studies to examine this important issue in detail. Our study sample comprised bereaved, adult family members, who gave consent to organ and/or tissue donation from a deceased relative at an Acute NHS Trust in the Midlands, UK. Three participants from two donor families participated in a face-to-face interview. Two donor families provided a written response to pre-determined interview questions. Data were subjected to conventional content analysis. This involved a systematic process of applying codes to the text and grouping the data into categories and themes. The study received ethical approval. Results The findings of our exploratory investigation established the meaning of recognition for participant donor families and identified ways in which recognition may be realised. Donor families indicated unanimous support for organ and tissue donation to be formally recognised by the hospital where their relative died. An interesting observation was the extent to which families represented their experience of donation when deciding on the physical, emotional and relational qualities of a memorial design. For example, an association with nature seemed contiguous with the symbolism of life, and several of the participants were of the opinion that the memorial should transmit a sense of joy and pride. Participants identified three functions of a public memorial; recognition, remembrance and raising public awareness about organ and tissue donation. Facilitators of the donation process were identified as also worthy of recognition. Conclusion The concept of recognition has an important functional meaning in the context of deceased donation. Involving donor families in the design of a public memorial provides a means of expressing recognition and ensures a fitting tribute. Further research is recommended to test the efficacy of the different forms of recognition in the public domain.The Royal Wolverhampton NHS Trust Organ Donation Group, and Charit

'A little dollop of good in a very dark time’: what organ donation meant to donor families

Department of Healt

Life on the list: an exploratory study of the life world of individuals waiting for a kidney transplant

Kidney transplantation is the treatment of choice for many individuals with end stage renal disease (ESRD), as transplantation is reported to offer a greater quality of life than renal dialysis. At the end of March 2008 there were 6980 people on the active transplant list for kidney or kidney and pancreas transplants. However, during the previous year a total of 1453 deceased donor kidney transplants were carried out1, illustrating the mismatch between demand for and availability of kidneys for transplant. Whilst the Government has pledged to improve transplant services and to address the organ shortage, individuals on the kidney transplant list are currently facing an average wait of more than two years. Individuals waiting for a kidney transplant face complex challenges, which are currently poorly researched. An insight into the experience of waiting for a kidney transplant and how individuals interpret that wait could contribute to clinical knowledge and lead to improved support for these individuals. It could also raise public awareness about the issues involved in waiting for a kidney transplant, potentially encouraging donatio

Research with bereaved families

Theoretical debates about the nature of grief and bereavement draw attention to the sensitivity of carrying out research with bereaved people, the possible threats that this may pose and the ethical considerations required to ameliorate potentially damaging outcomes. The authors of this article present a framework for ethical decision-making that has been successfully developed in the context of research with bereaved families. The discussion focuses on application and evaluation of the framework during research with family members who were approached about the donation of a deceased relative’s organs and/or tissues for transplantation. Practical strategies of relevance to the processes of participant recruitment, the interview encounter and follow-up care in the post-interview period are identified and discussed. Concerns about the possible impact of bereavement research are balanced with the views of family members who gave credence to the therapeutic and cathartic benefits of participating in sensitive, death-related research. </jats:p

Radical actions to address UK organ shortage, enacting Iran’s paid donation programme: A discussion paper

Globally there is a shortage of organs available for transplant resulting in thousands of lives lost as a result. Last year in the United Kingdom (UK) 457 people died as a result of organ shortage1. NHS Blood and Transplant suggest national debates to test public attitudes to radical actions to increase organ donation should be considered in addressing organ shortage. The selling of organs for transplant in the UK is prohibited under the Human Tissue Act 2004. This discussion paper considers five ethical objections raised in the UK to paid donation, and discusses how these objections are managed within the only legal and regulated paid living unrelated renal donation programme in the world in Iran, where its kidney transplant list was eliminated within two years of its commencement. This paper discusses whether paid living unrelated donation in Iran increases riskier donations, and reduced altruistic donation as opponents of paid donation claim. The paper debates whether objections to paid donation based upon commodification arguments only oppose enabling financial ends, even if these ends enable beneficent acts. Discussions in relation to whether valid consent can be given by the donor will take place, and will also debate the objection that donors will be coerced and exploited by a paid model. This paper suggests that exploitation of the paid donor within the Iranian model exists within the legally permitted framework. However paid living kidney donation should be discussed further and other models of paid donation considered in the UK as a radical means of increasing donation