• An ethical framework for researching the bereaved

      Sque, Magi; Walker, Wendy; Long-Sutehall, Tracy (2017-09)
      Ethics and governance committees are tasked with the responsibility of assessing the benefits of research, proportionate to the potential for harm. Despite the development of a more integrated and streamlined approach to the review process, professional judgement is involved in the interpretation of standards for research, which can present a number of challenges for reviewers in an increasingly risk-averse climate. Individual professional judgements and an inclination to risk-averse decisions may mean investigators come across individuals or groups who act as over-zealous gatekeepers during the research process and experience variation in the verdicts of ethics committees or encountering decisions that are based on a priori assumptions. Over-cautious reactions to bereavement research can restrict access to participants or data and impose requirements that undermine the research design or in fact curb any enthusiasm to proceed with what may prove to be important work. Protection appears to be concerned with the prevention of distress to participants who are asked to recollect what may have been an emotionally challenging or traumatic event. There is however evidence to suggest that research participation may serve the interests of the bereaved in a variety of positive ways. We present a framework for ethical decision-making that sets out practical strategies for participant identification, recruitment, data collection using interviews and post participation follow-up care. The development of the framework was based on ethical principles that underpin research governance. The content was drawn from four studies that interviewed bereaved families of organ donors about their experiences of donating organs of a deceased relative. The practical strategies proposed in the framework were themselves exposed to ethical scrutiny, with participant and researcher evaluations determining their appropriateness. Continuing positive feedback from the use of the framework approach has contributed to its dependability in supporting ethical decision-making in bereavement research. Our team of researchers’ satisfaction of working within this structure is such that it has furnished us with the confidence to offer the framework for the support of others who may be involved in the review and conduct of bereavement research.
    • Aspiring to Higher Education? The complex views of secondary students

      Brown, Zeta; Duncan, Neil; Rhoades, Gavin; Smith, Matt; Thompson, David (2019-06-28)
      Commissioned by Explore University to evaluate their 2016-2017 programme that endeavoured to inspire young people to attend university. Aimed at people of school age who might find value in studying in higher education, the programme sought to: raise awareness provide information organise experiences Objectives of the Study Identify shared perspectives towards applying to university Evaluate if Explore University had influenced or supported participants’ perspectives Analyse expectations and strength of commitment to apply to university
    • Donation after circulatory death: A case study

      Sque, Magi; Walker, Wendy (2017-09)
      Introduction: Donation after circulatory death (DCD) represents a major source of organs for the future expansion of transplantation practice. The UK has seen a substantial increase in controlled DCD, and in 2015/16, this type of donation represented 42% of all deceased organ donors.1 The success of this programme is attributed to the provision of legal, ethical, and professional guidance, and the underpinning principle of routinely viewing controlled DCD as a legitimate part of end-of-life care.1 This presentation evaluates the care pathway for controlled DCD through the lens of a donor family. Method: A case of controlled DCD was selected from a UK national study of bereaved families’ experiences of organ and tissue donation, and perceived influences on their decision making.2 The study received ethical approval, and reported for the first time within UK, the experiences and outcomes for a sample of families who gave consent to DCD. [R, the case], a 61 year-old male was admitted to intensive care following a brain haemorrhage. His family comprised two sisters, who were the next-of-kin donation decision makers. Qualitative, directed content analysis3 was the selected method of case analysis. This involved a systematic process of coding and categorising the data. The coding framework was based on pre-established criteria, namely an established framework for determining the past, present and future dimensions of the families’ temporal landscape.4 Further, we analysed the case to determine compliance with best practice guidance for controlled DCD in the UK. Results: The case portrayed intimate detail of the family’s donation decision and the apparent influences of prior knowledge, experience, attitudes and beliefs; the moment in time when the family experienced the potential for organ donation; and the perceived expectations and outcomes arising from their decision. The case provided evidence of high quality care and communication as perceived by the donor family, and the application of national guidance in the delivery of local practice. Conclusion: Individual case analysis provided an in-depth, holistic understanding of a donor family’s experience of controlled DCD. Donor family interpretations make an important contribution to evaluating the design and delivery of DCD programs at the end of life.
    • Ethical issues in bereavement research: Practical use of a decision-making framework

      Walker, Wendy; Sque, Magi; Long-Sutehall, Tracy (2017-09)
      There are many phenomena in nursing that fulfil the criteria of sensitive research. Sensitive research has been defined as research that poses an intrusive threat, explores an intensely personal experience or has the potential to arouse an emotional response. The central concern being the possible threat it poses to participants and researchers that could be both physically and mentally distressing. Without doubt bereavement fulfils the criteria of a sensitive research topic that demands careful planning in the design of a study, to assess the ethical issues involved, and to ameliorate the risk of harm.This paper adds to the discourse concerning ethics in bereavement research. It demonstrates the practical use of a framework for ethical decision-making when undertaking research with bereaved participants. We contextualise the framework and issues of ethical importance through presentation of a qualitative, exploratory, interview study with bereaved families who consented to organ and tissue donation from a deceased relative. The sensitive nature of the study is illustrated by providing an overview of participants’ descriptions of a critical event that led to a sudden bereavement. Practical strategies of relevance to the processes of: participant recruitment, the interview encounter and follow-up care in the post-interview period are illustrated and discussed. Concerns about the possible repercussions of bereavement research are balanced with the views of family members who gave credence to the therapeutic and cathartic benefits of taking part in sensitive, death related research. Through our research with bereaved families, we are privileged to offer acceptable standards for research ethics and governance, of value to the community of nurses involved in bereavement research.
    • The experiences of orthopaedic and trauma hospital care from the perspectives of adults with an intellectual/learning disability in England, UK: An interpretative phenomenological analytical study

      Drozd, Mary; Chadwick, Darren; Jester, Rebecca (RCN, 2019-09-03)
      Introduction: Musculoskeletal conditions and injuries are prevalent in people with intellectual disabilities and have significant impacts on wellbeing. This study was important as this group seldom have their voices heard and their experiences valued and interpreted. Aim: To better understand the orthopaedic and trauma hospital experiences from the perspective of people with an intellectual disability. Methods: A qualitative perspective focusing on peoples’ lived experiences was utilized. A purposive sample of five participants was recruited and one-to-one, semi-structured interviews were undertaken. Analysis of the interviews employed an interpretative phenomenological analytical framework. Results: A cross-case comparison was undertaken and the themes below represent common experiences across participants: • Communication problems. • Lack of person-centred care. • Issues related to pain. • Lack of confidence in hospital care. • The support of carers. • Incompetence of hospital staff. • Loneliness. Implication for practice: Specific and on-going education and training of health care staff is required to improve orthopaedic and trauma care for people with an intellectual disability around: • Effective communication • Regular and competent pain assessment and management • Including and valuing carers of adults with an intellectual disability • Person-centred care for all
    • Flipped Learning in Teacher Education

      Smith, Matt; Gurton, Paul (2019-06-28)
      The very term “flipped classroom” describes how the locations for learning events are inverted (Wilson, 2013). Abeysekera & Dawson list six characteristics of flipping learning, most of which demonstrate a clear inversion of the more normative, traditional approach to learning activities, which they call “moving tasks in time and space” (Abeysekera & Dawson, 2015 p2). They list some examples of this as transferring what would traditionally have happened in class (i.e. the teaching of the subject material) to an out-of-class activity and, conversely doing activities traditionally considered homework (such as working on problems after teacher input) in the classroom. These in-class activities emphasise active learning and peer learning, facilitated through pre- and post-class activities, and the use of technology (Abeysekera & Dawson, 2015; Yough et al., 2017).
    • HeadStart schools qualitative research

      Smith, Matt (BESA, 2019-06-27)
      In order to understand the perspectives of schools participating in the HeadStart programme better, the Education Observatory undertook qualitative research with the member of senior management with overall responsibility for PSHE, SUMO and/or the integration of HeadStart in a focused sample group of four primary schools. Using a common semi-structured interview schedule based on our created theoretical framework, four researchers each went in to one primary school to interview the lead teacher. Their responses were then analysed by the research team and collated to identify key themes. Schools stated programmes which were embedded in school practice had greater impact. In these cases HeadStart activities are seen as complementary rather than an add-on; that children were involved in learning essential skills for life, coupled with developing greater self-esteem and resilience; and that teachers have also become more conscious of their own mental health and wellbeing as a result of their engagement with HeadStart. The development of a shared language through SUMO was highlighted as positive, but schools were clear about the need for high quality training for all members of staff, which needs to be maintained as staff move key stages or new staff join the school.
    • Online bibliographic databases and systematic literature reviews: some reflections

      Smith, Matt; Scott, Howard (University of Wolverhampton, 2020-07-08)
    • Recognising the gift of organ and tissue donation: an evidence-based approach

      Walker, Wendy; Sque, Magi; Carpenter, Benedict; Roberts, Suzanne (2017-09)
      Introduction: Transplantation would not be possible without public commitment and support. In 2008, the UK Organ Donation Taskforce1 advocated formal means of honouring the gift of donation. A key recommendation was the need for research to establish the means of recognition that most donor families would appreciate.1 This paper presents 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. Method: We carried out an exploratory study over 12 months. Our study sample comprised bereaved adult family members who gave consent to organ and/or tissue donation from a deceased relative at an Acute National Health Service 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 analysis2 to form categories and themes. The study received ethical approval. Results: Our investigation established the meaning of recognition 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. Although there was no real consensus of opinion or superior choice about the exact item of recognition, participants shared an inclination for convention, and their ideas helped to establish communal preferences regarding the nature, design and location of the object. An interesting observation was the extent to which participants symbolised their experience of donation when deciding on the physical, emotional and relational qualities of the artwork. 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 experiences of orthopaedic & trauma nurses who have cared for people with a learning disability in hospital

      Drozd, Mary; Norris, Kirsty; Chadwick, Darren; Eggison, Peter; Clinch, Christine (2016-09-16)
    • Towards optimal intensity

      Metsios, George (BMJ Publishing Group Ltd and European League Against Rheumatism, 2019-05-27)
      Background: There is ample evidence now to suggest that exercise can help ameliorate RMD symptoms and comorbidities. Similar to the prescription of medication, the dosage of exercise should be optimized to achieve the best health benefits. However, a consensus on the dosage of exercise prescription for RMD patients is currently missing. Objectives: This talk will explore the data required from RMD patients to develop the best exercise prescription, exercise principles and current state-of-the-art, as well as how we can use the current evidence to identify the optimum dosage for the exercise prescription in people with RMDs. Methods: Suggestions have been synthesized using existing evidence-based resources, including recent systematic reviews and meta-analyses (EULAR, Cochrane Library and peer-reviewed journals publications) as well as randomized controlled trials. Data for the effectiveness of exercise dosage on various different outcomes has been extracted and will be explored. Results: Different dosages of exercise have differing effects on symptoms of RMDs. The optimal dosage depends on various factors and on the outcome that the exercise prescription aims to improve. Conclusion: Despite the increasing research on exercise in RMDs, a currently a consensus for the optimal exercise dosage is currently missing. More interdisciplinary research, with a heavy patient involvement, is required in the area. Disclosure of Interests: None declared
    • What does it mean to be well for a person with prostate cancer?

      Matheson, David (University of Wolverhampton, 2022-04-06)
    • What is important from a patient's perspective?

      Matheson, David (APCCC, 2022-04-28)