Contested knowledge in the assessment of public health risks: A case study of the Nant-y-Gwyddon landfill site in the Rhondda valley, South Wales

In recent years traditional approaches to the assessment of health hazards have struggled to connect with the concerns of local communities, resulting in disputes over the interpretation of risk. The Nant-y-Gwyddon (NyG) landfill site in the Rhondda valley, south Wales, was shut down in March 2002 on the recommendations of an independent investigation, following five years of concerted and highly publicised protest action by a group calling itself Rhondda Against Nant-y-Gwyddon Tip (RANT). This local environmental protest provides an interesting case study in the sociology of public health risks and community mobilisation. The research has aimed to explore the key processes and relationships involved in the evaluation of perceived threats to public health in the period up to the closure of the tip in 2002. Rich documentary data formed the primary evidence for the case-study, and this has been used for two main purposes: first, to construct an historical account of the protest focusing specifically on the actions and perspectives of the residents who became local activists and secondly, to explore the positioning of the main actors in relation to some of the key issues and events. This research contributes to theory in several ways. The findings are illustrative of the different kinds of knowledge and expertise brought into play by both residents and statutory bodies, and as such connects with the literature on types of expertise, local knowledge and popular epidemiology. The research also highlights the need to locate such struggles in their broader social and cultural contexts, and suggests the importance of concepts such as dependency, hegemony and counter- hegemony, for understanding lay-expert relationships and protest more broadly. Following this, various examples are also given to suggest the development of several counter-hegemonic features of the residents' campaign, across epistemological, social and political domains

“It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers

Background Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a “void” created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues

The challenge pathway: a mixed methods evaluation of an innovative care model for the palliative and end-of-life care of people with dementia (innovative practice)

An innovative service for the palliative and end-of-life care of people with dementia was introduced at a UK hospice. This evaluation involved analysis of audit data, semi-structured interviews with project staff (n=3) and surveys of family carers (n=15) and professionals (n=20). The service has increased access to palliative, end-of-life care and other services. Improvements were reported in the knowledge, confidence and care skills of family carers and professionals. Carers felt better supported and it was perceived that the service enabled more patients to be cared for at home or in their usual place of care

Why do patients decline surgical trials? Findings from a qualitative interview study embedded in the Cancer Research UK BOLERO trial (Bladder cancer: Open versus Lapararoscopic or RObotic cystectomy)

Background Surgical trials have typically experienced recruitment difficulties when compared with other types of oncology trials. Qualitative studies have an important role to play in exploring reasons for low recruitment, although to date few such studies have been carried out that are embedded in surgical trials. The BOLERO trial (Bladder cancer: Open versus Lapararoscopic or RObotic cystectomy) is a study to determine the feasibility of randomisation to open versus laparoscopic access/robotic cystectomy in patients with bladder cancer. We describe the results of a qualitative study embedded within the clinical trial that explored why patients decline randomisation. Methods Ten semi-structured interviews with patients who declined randomisation to the clinical trial, and two interviews with recruiting research nurses were conducted. Data were analysed for key themes. Results The majority of patients declined the trial because they had preferences for a particular treatment arm, and in usual practice could choose which surgical method they would be given. In most cases the robotic option was preferred. Patients described an intuitive ‘sense’ that favoured the new technology and had carried out their own inquiries, including Internet research and talking with previous patients and friends and family with medical backgrounds. Medical histories and lifestyle considerations also shaped these personalised choices. Of importance too, however, were the messages patients perceived from their clinical encounters. Whilst some patients felt their surgeon favoured the robotic option, others interpreted ‘indirect’ cues such as the ‘established’ reputation of the surgeon and surgical method and comments made during clinical assessments. Many patients expressed a wish for greater direction from their surgeon when making these decisions. Conclusion For trials where the ‘new technology’ is available to patients, there will likely be difficulties with recruitment. Greater attention could be paid to how messages about treatment options and the trial are conveyed across the whole clinical setting. However, if it is too difficult to challenge such messages, then questions should be asked about whether genuine and convincing equipoise can be presented and perceived in such trials. This calls for consideration of whether alternative methods of generating evidence could be used when evaluating surgical techniques which are established and routinely available