Hillsborough: The Truth

Hillsborough: The Truth was first published in 1999 to universal acclaim. Established as the definitive, unique account of the disaster, in which 96 men, women and children died, hundreds were injured and thousands traumatised, it details the appalling treatment endured by the bereaved and survivors in the immediate aftermath and the inhumanity of the identification process. It reveals the inadequacies of the police investigations, official inquiries and inquests, uncovering the systematic review and alteration of South Yorkshire police statements conducted with the approval of police investigators and Lord Justice Taylor’s inquiry. It examines in depth the subsequent private prosecution and trial of two senior police officers in 2000. Using verbatim accounts, Scraton's detailed analysis demonstrates the inadequacy of legal processes and the remarkable breadth of judicial discretion, undermining and inhibiting such cases.

Powerful, disturbing and harrowing, Hillsborough: The Truth exposes the institutional complacency that made a tragedy on this scale inevitable. It shows the law’s failure to provide appropriate means of access, disclosure and redress for those facing the consequences of institutional neglect and personal negligence. And it tells how ordinary people suffer when those in authority sacrifice truth and accountability to protect their reputations. In this new edition Scraton reflects critically on two decades of policy and legal reform including crowd safety and inquest procedure and on the continuing struggles of the bereaved and survivors who have campaigned relentlessly for truth, acknowledgment and justice.

The experience of cancer cachexia: A qualitative study of advanced cancer patients and their family members

Background
Cachexia in advanced malignancy is a debilitating syndrome which contributes to approximately two million deaths worldwide annually. In spite of advances in understanding the biomedical aspects of cancer cachexia, little attention has been paid to exploring its holistic impact on patients and those who care for them.

Objective
The aim of this paper is to describe the lived experience of cachexia from the perspective of patients with cancer and their family members.

Design
An interpretative phenomenological approach was employed.

Setting and participants
A purposive sampling strategy recruited 15 patients and 12 family members from the Regional Cancer Centre in Northern Ireland.

Method
Each participant was interviewed during 2004/2005 using an unstructured interview. All interviews were recorded and transcribed verbatim. Analysis combined a two stage approach using thematic and interpretative phenomenological analysis.

Results
Analysis generated six superordinate themes that reflected the complex dynamics of the cachexia experience. Themes were: physiological changes in appetite; visuality of cachexia; weight loss interpreted as a bad sign; response from health care professionals; conflict over food; and coping responses.

Conclusions
Findings confirmed that cancer cachexia has far reaching implications for patients and their families, extending beyond physical problems into psychological, social and emotional issues. This insight is a critical first step in the development of more responsive care for these clients.

An exploration of the experience of cancer cachexia: What patients and their families want from health care professionals

The aim of this paper is to investigate the perceptions of patients and family members with regard to care received for cancer cachexia. A qualitative study recruited 27 participants, of which 15 were patients with advanced cancer who had primary cachexia and 12 were family members. Participants were recruited from a regional cancer centre in the UK. All participants took part in a domiciliary interview, which was transcribed verbatim for analysis. A major finding from analysis was ‘lack of response from health care professionals’ in relation to cancer cachexia management. This finding illuminated that patients and their family members wanted three things from healthcare professionals. They wanted their profound weight loss acknowledged, they wanted information about it and why it was happening and they wanted interventions to deal with it. This paper provides powerful messages for healthcare professionals and highlights the needs of patients and their family regarding cancer cachexia management. Patients and their families want this problem addressed by healthcare professionals. This client group requires supportive healthcare interventions, so that they can understand the nature and impact of this syndrome.

The experience of individuals with renal failure participating in home haemodialysis: An interpretative phenomenological analysis.

This study explored the experience of individuals with renal failure undertaking home haemodialysis (HHD). Semi-structured interviews were conducted with six participants who were active HHD users in a UK region. Participants’ accounts were transcribed verbatim and analysed using an interpretative phenomenological approach. Three main themes were identified: (1) embracing treatment and lifestyle freedom and flexibility; (2) re-establishing a sense of self and preferred self-identity; and (3) integrating aspects of active engagement and aspects of supported, life-sustaining dependence. A ‘good fit’ between the HHD user (an independent, self-determined health participant) and the healthcare provision (personalized, enabling) is proposed.

Factors influencing patients with stage 5 chronic kidney disease to opt for conservative management: a practitioner research study

Aims and objectives. This study explored decision-making experiences of patients with stage 5 chronic kidney disease when opting for conservative management of their renal failure.

Background. Dialysis is an invasive treatment, and for some older patients, there is an associated treatment burden of dialysis-related symptoms. An alternative choice is conservative management, but little is known about those who make this decision and how they are supported through the process.

Design. Qualitative practitioner research study.

Method. Data were generated from nine patients' naturally occurring clinic consultations with a renal clinical nurse specialist between May 2010 - July 2010. Interviews were transcribed verbatim and findings fed back at three multi-disciplinary meetings to check for relevance and resonance. Common themes were identified and codes applied.

Results. Patients reported age and having to travel three times a week to hospital for dialysis as reasons not to opt for treatment. Others felt well without dialysis not wanting to upset the 'status quo' or to burden loved ones. Most felt equipped to make the decision following explanation and discussion with the clinical nurse specialist in the renal clinic.

Conclusions. Patients opting for conservative management give numerous reasons for this including old age, travel limitations, feeling well without dialysis and not wanting to be a burden, but appear content with their decision. One-to-one discussions with the clinical nurse specialist appear helpful during the decision-making process presenting an opportunity for advancing nursing roles in the chronic kidney disease service.

Relevance to clinical practice. Understanding patients' reasons for refusing dialysis assists in supporting until death. There is an opportunity for developing nursing practice to meet the multi-faceted needs of this group.

The influence of evidence-based medicine training on decision-making in relation to over-the-counter medicines: a qualitative study

Objectives
To explore the role of evidence of effectiveness when making decisions about over-the-counter (OTC) medication and to ascertain whether evidence-based medicine training raised awareness in decision-making. Additionally, this work aimed to complement the findings of a previous study because all participants in this current study had received training in evidence-based medicine (unlike the previous participants).

Methods
Following ethical approval and an e-mailed invitation, face-to-face, semi-structured interviews were conducted with newly registered pharmacists (who had received training in evidence-based medicine as part of their MPharm degree) to discuss the role of evidence of effectiveness with OTC medicines. Interviews were recorded and transcribed verbatim. Following transcription, all data were entered into the NVivo software package (version 8). Data were coded and analysed using a constant comparison approach.

Key findings
Twenty-five pharmacists (7 males and 18 females; registered for less than 4 months) were recruited and all participated in the study. Their primary focus with OTC medicines was safety; sales of products (including those that lack evidence of effectiveness) were justified provided they did no harm. Meeting patient expectation was also an important consideration and often superseded evidence. Despite knowledge of the concept, and an awareness of ethical requirements, an evidence-based approach was not routinely implemented by these pharmacists. Pharmacists did not routinely utilize evidence-based resources when making decisions about OTC medicines and some felt uncomfortable discussing the evidence-base for OTC products with patients.

Conclusions
The evidence-based medicine training that these pharmacists received appeared to have limited influence on OTC decision-making. More work could be conducted to ensure that an evidence-based approach is routinely implemented in practice

A qualitative study exploring the perceived impact of supervision training on cognitive therapy supervisor practice

Although cognitive therapy (CT) has a large empirical base, research is lacking for CT supervision and supervision training, which presents an obstacle for evidence-based practice. A pilot CT supervision training programme, based on Milne’s (2007a, 2009) evidence-based supervision and Roth and Pilling (2008) supervision competences was developed by the Northern Ireland Centre for Trauma and Transformation (NICTT), an organisation specialising in CT therapy provision and training. This study qualitatively explores CT supervisors’ perceptions of the impact the training had on their practice. Semi-structured interviews were conducted with seven participants, transcribed verbatim and analysed using Burnard’s (1991) thematic content analysis.

Findings illustrated that experienced CT supervisors perceived benefit from training and that the majority of supervisors had implemented contracts, used specific supervision models and paid more attention to supervisee learning as a result of the training. Obstacles to ensuring good supervision included the lack of reliable user-friendly evaluation tools and supervisor consultancy structures.

Recommendations are also made for future research to establish the long-term effects of supervision training and its effect on patient outcomes. Implications for future training based on adult learning principles are discussed.

Healthcare professionals’ response to cachexia in advanced cancer: A qualitative study

Purpose/Objectives: To explore healthcare professionals' experience, understanding, and perception of the needs of patients with cachexia in advanced cancer.

Research Approach: A qualitative approach based on symbolic interactionism.

Setting: A regional cancer center in a large teaching hospital in the United Kingdom.

Participants: 34 healthcare professionals who had experience providing care to patients with cachexia in advanced cancer.

Methodologic Approach: Data collection consisted of two phases: focus group and semistructured interviews. Interviews were digitally recorded and transcribed verbatim for analysis. This article reports on findings from the second phase of data collection.

Findings: Analysis revealed that professional approaches to cachexia were influenced by three overarching and interthinking themes: knowledge, culture, and resources. Healthcare professionals commonly recognized the impact of the syndrome; however, for nonpalliative healthcare professionals, a culture of avoidance and an overreliance on the biomedical model of care had considerable influence on the management of cachexia in patients with advanced cancer.

Conclusions: Cachexia management in patients with advanced cancer can be difficult and is directed by a variable combination of the influence of knowledge, culture of the clinical area, and available resources. Distinct differences exist in the management of cachexia among palliative and nonpalliative care professionals.

Interpretation: This study presented a multiprofessional perspective on the management of cachexia in patients with advanced cancer and revealed that cachexia is a complex and challenging syndrome that needs to be addressed from a holistic model of care.

Knowledge Translation: Cachexia management in patients with advanced cancer is complex and challenging and is directed by a combination of variables. An overreliance on the biomedical model of health and illness occurs in the management of cachexia in patients with advanced cancer. Cachexia needs to be addressed from a holistic model of care to reflect the multidimensional needs of patients and their families.

A qualitative study of psychological, social and behavioral barriers to appropriate food portion size control

Background: Given the worldwide prevalence of overweight and obesity, there is a clear need for meaningful practical healthy eating advice - not only in relation to food choice, but also on appropriate food portion sizes. As the majority of portion size research to date has been overwhelmingly quantitative in design, there is a clear need to qualitatively explore consumers’ views in order to fully understand how food portion size decisions are made. Using qualitative methodology this present study aimed to explore consumers’ views about factors influencing their portion size selection and consumption and to identify barriers to appropriate portion size control.

Methods: Ten focus groups with four to nine participants in each were formed with a total of 66 persons (aged 19–64 years) living on the island of Ireland. The semi-structured discussions elicited participants’ perceptions of suggested serving size guidance and explored the influence of personal, social and environmental factors on their food portion size consumption. Audiotapes of the discussions were professionally transcribed verbatim, loaded into NVivo 9, and analysed using an inductive thematic analysis procedure.
Results: The rich descriptive data derived from participants highlight that unhealthy portion size behaviors emanate from various psychological, social and behavioral factors. These bypass reflective and deliberative control, and converge to constitute significant barriers to healthy portion size control. Seven significant barriers to healthy portion size control were apparent: (1) lack of clarity and irrelevance of suggested serving size guidance; (2) guiltless eating; (3) lack of self-control over food cues; (4) distracted eating; (5) social pressures; (6) emotional eating rewards;
and (7) quantification habits ingrained from childhood.

Conclusions: Portion size control strategies should empower consumers to overcome these effects so that the consumption of appropriate food portion sizes becomes automatic and habitual.
Keywords: Food portion size, Barriers, Obesity, Consumers, Qualitative study. © 2013 Spence et al.; licensee BioMed Central Ltd

How does involvement of a hospice nurse specialist impact on the experience on informal caring in palliative care? Perspectives of middle-aged partners bereaved through cancer

The aim of this study was to retrospectively explore partners' understandings and experiences in relation to caring for a loved one with a terminal illness, with a particular focus on the role of the hospice nurse specialist (HNS). Participants were purposively sampled and recruited through HNS gatekeepers. Seven middle-aged, bereaved partners participated in semi-structured, qualitative interviews. The interviews were audio recorded and transcribed verbatim and data were analysed using thematic content analysis. Five main themes emerged regarding the impact of the HNS on informal caring: ‘the ambivalence of caring’, ‘the HNS as a “confidante” in caring’, ‘the HNS as a “champion” in support’, ‘the work of the HNS – an unseen benefit’ and ‘being prepared for death and bereavement’. Findings from this study offer new insights into how involvement of a HNS impacts on the ability of carers to perform their role as an informal caregiver. Results highlight a crucial need for carers to have a clear understanding of all aspects of the HNS role so that full benefit is derived from their input. Recruitment of experienced and knowledgeable nurses is paramount, but equally important for carers is the supportive aspect of the role for which nurses need to demonstrate excellent communication skills and an intuitive, caring approach.

Identifying solutions to increase participation in physical activity interventions within a socio-economically disadvantaged community: a qualitative study

Background: There is an urgent need to increase population levels of physical activity, particularly amongst those who are socio-economically disadvantaged. Multiple factors influence physical activity behaviour but the generalisability of current evidence to such ‘hard-to-reach’ population subgroups is limited by difficulties in recruiting them into studies. Also, rigorous qualitative studies of lay perceptions and perceptions of community leaders about public health efforts to increase physical activity are sparse. We sought to explore, within a socio-economically disadvantaged community, residents’ and community leaders’ perceptions of physical activity (PA) interventions and issues regarding their implementation, in order to improve understanding of needs, expectations, and social/environmental factors relevant to future interventions.

Methods: Within an ongoing regeneration project (Connswater Community Greenway), in a socio-economically disadvantaged community in Belfast, we collaborated with a Community Development Agency to purposively sample leaders from public- and voluntary-sector community groups and residents. Individual semi-structured interviews were conducted with 12 leaders. Residents (n=113), of both genders and a range of ages (14 to 86 years) participated in focus groups (n=14) in local facilities. Interviews and focus groups were recorded, transcribed verbatim and analysed using a thematic framework.

Results: Three main themes were identified: awareness of PA interventions; factors contributing to intervention effectiveness; and barriers to participation in PA interventions. Participants reported awareness only of interventions in which they were involved directly, highlighting a need for better communications, both inter- and intra-sectoral, and with residents. Meaningful engagement of residents in planning/organisation, tailoring to local context, supporting volunteers, providing relevant resources and an ‘exit strategy’ were perceived as important factors related to intervention effectiveness. Negative attitudes such as apathy, disappointing experiences, information with no perceived personal relevance and limited access to facilities were barriers to people participating in interventions.

Conclusions: These findings illustrate the complexity of influences on a community’s participation in PA interventions and support a social-ecological approach to promoting PA. They highlight the need for cross-sector working, effective information exchange, involving residents in bottom-up planning and providing adequate financial and social support. An in-depth understanding of a target population’s perspectives is of key importance in translating PA behaviour change theories into practice.

Learning fluid prescription skills: why is it so challenging?

IIt is well recognised that medical students and junior doctors find fluid prescription a challenging topic. This study was designed to gain a greater understanding of the experiences that medical students face related to learning about fluid prescribing. Methods: A qualitative approach, using focus groups, was employed in this research. Final-year medical students in academic year 2011-12 at Queen's University Belfast were invited to participate during their 'Assistantship' placement in March 2012. Discussions in focus groups, consisting of between six and eight students, were recorded and transcribed verbatim. The research team, consisting of three separate investigators, conducted thematic analysis independently. A final consensus regarding emerging themes was reached by discussion within the whole research team. Medical students and junior doctors find fluid prescription a challenging topic Results: Five prominent themes emerged: 'Teaching experience: a disruptive variation'; 'Curricular disconnections'; 'The driving test: Theory-practice transformation'; 'Role modelling: which standard to aspire to?'; and finally 'Reconciling the perceived risk'. Discussion: This re search provided insights into medical students' opinions of the teaching practices and learning experiences related to fluid prescribing. The learning of prescribing skills is complex andcontextual. In the development of such skills, medical students are often exposed to conflicting educational experiences that challenge the novicelearner in making judgements on best prescribing practice. This study adds to the body of evidence that fluid prescription is a difficult topic, and has generated a number of multifaceted and strategic recommendations to potentially improve fluid prescription teaching.

Learning, development, and support needs of community palliative care clinical nurse specialists

Background: The palliative care clinical nurse specialist (PC-CNS) is a core member of the specialist palliative care team. According to professional policy, the role has four specific components: clinical practice, education, research, and leadership and management. Little is known about how to support staff in this role. Aim: The aim of this study was to explore what learning, development, and support PC-CNSs in one hospice need to enable them to fulfil all components of their role. Design: Using a descriptive exploratory approach, semi-structured interviews were undertaken with a purposive sample of community PC-CNSs from a hospice in Northern Ireland. Interviews were audio-recorded, transcribed verbatim, and thematically analysed. Findings: Seventeen interviews were analysed and three themes identified: influence of organisational culture, influence of the individual, and learning and development solutions. Conclusions: Participants reported that the PC-CNS role was stressful. They identified that the organisational culture and indeed individuals themselves influenced the learning and development support available to help them fulfil the four components of the role. Working relationships and stability within teams affected how supported individuals felt and had implications for managers in meeting the needs of staff while balancing the needs of the service.

‘All illness is personal to that individual’: a qualitative study of patients’ perspectives on treatment adherence in bronchiectasis

Background: Adherence to treatment is low in bronchiectasis and is associated with poorer health outcomes. Factors affecting adherence decisions have not been explored in patients with bronchiectasis. 

Objective: We aimed to explore patients' perspectives on adherence, factors affecting adherence decision making and to develop a conceptual model explaining this decision-making process in adults with bronchiectasis. 

Methods: Adults with bronchiectasis participated in one-to-one semi-structured interviews. Interviews were audio-recorded, transcribed verbatim and analysed independently by two researchers using thematic analysis. Data from core themes were extracted, categorized into factors affecting adherence decision making and used to develop the conceptual model. 

Results: Participants' beliefs about treatment, the practical aspects of managing treatment, their trust in health-care professionals and acceptance of disease and treatment were important aspects of treatment adherence. The conceptual model demonstrated that adherence decisions were influenced by participants' individual balance of barriers and motivating factors (treatment-related, disease-related, health-care-related, personal and social factors). 

Conclusion: Adherence decision-making in bronchiectasis is complex, but there is the potential to enhance adherence by understanding patients' specific barriers and motivators to adherence and using this to tailor adherence strategies to individual patients and treatments. © 2014 John Wiley & Sons Ltd.

Caught in a 'spiral': barriers to healthy eating and dietary health promotion needs from the perspective of unemployed young people and their service providers

The number of young people in Europe who are not in education, employment or training (NEET) is increasing. Given that young people from disadvantaged backgrounds tend to have diets of poor nutritional quality, this exploratory study sought to understand barriers and facilitators to healthy eating and dietary health promotion needs of unemployed young people aged 16-20 years. Three focus group discussions were held with young people (n=14). Six individual interviews and one paired interview with service providers (n=7). Data were recorded, transcribed verbatim and thematically content analysed. Themes were then fitted to social cognitive theory (SCT). Despite understanding of the principles of healthy eating, a ‘spiral’ of interrelated social, economic and associated psychological problems was perceived to render food and health of little value and low priority for the young people. The story related by the young people and corroborated by the service providers was of a lack of personal and vicarious experience with food. External, environmental factors such as the proliferation and proximity of fast food outlets and the high perceived cost of ‘healthy’ compared to ‘junk’ food rendered the young people low in self-efficacy and perceived control to make healthier food choices. Agency was instead expressed through consumption of junk food and substance abuse. Both the young people and service providers agreed that for dietary health promotion efforts to succeed, social problems needed addressed and agency encouraged through (individual and collective) active engagement of the young people themselves.