The 'lived experience' of palliative care patients in one acute hospital setting - a qualitative study

Background There is limited understanding of the ‘lived experience’ of palliative care patient within the acute care setting. Failing to engage with and understand the views of patients and those close to them, has fundamental consequences for future health delivery. Understanding ‘patient experience’ can enable care providers to ensure services are responsive and adaptive to individual patient need. Methods The aim of this study was to explore the ‘lived experience’ of a group of patients with palliative care needs who had recently been in-patients in one acute hospital trust in the north-west of England. Qualitative research using narrative interviews was undertaken, and data was analysed using thematic analysis. A sample of 20 consecutive patients complying with the inclusion/exclusion criteria were recruited and interviewed. Results Patient Sample: Of the 20 patients recruited, there was a fairly equal gender split; all had a cancer diagnosis and the majority were white British, with an age range of 43–87 years. Findings from Interviews: Overall inpatient experience was viewed positively. Individual narratives illustrated compassionate and responsive care, with the patient at the centre. Acts of compassion appeared to be expressed through the ‘little things’ staff could do for patients, i.e., time to talk, time to care, humanity and comfort measures. AHSPCT involvement resulted in perceived improvements in pain control and holistic wellbeing. However, challenges were evident, particularly regarding over-stretched staff and resources, and modes of communication, which seemed to impact on patient experience. Conclusions Listening to patients’ experiences of care across the organisation provided a unique opportunity to impact upon delivery of care. Further research should focus on exploring issues such as: why some patients within the same organisation have a positive experience of care, while others may not; how do staff attitudes and behaviours impact on the experience of care; transitions of care from hospital to home, and the role of social networks

Factors influencing the surgery intentions and choices of women with early breast cancer: the predictive utility of an extended theory of planned behaviour

Contains fulltext : 125449.pdf (publisher's version ) (Open Access)BACKGROUND: Women diagnosed with early breast cancer (stage I or II) can be offered the choice between mastectomy or breast conservation surgery with radiotherapy due to equivalence in survival rates. A wide variation in the surgical management of breast cancer and a lack of theoretically guided research on this issue highlight the need for further research into the factors influencing women's choices. An extended Theory of Planned Behaviour (TPB) could provide a basis to understand and predict women's surgery choices. The aims of this study were to understand and predict the surgery intentions and choices of women newly diagnosed with early breast cancer, examining the predictive utility of an extended TPB. METHODS: Sixty-two women recruited from three UK breast clinics participated in the study; 48 women, newly diagnosed with early breast cancer, completed online questionnaires both before their surgery and after accessing an online decision support intervention (BresDex). Questionnaires assessed views about breast cancer and the available treatment options using items designed to measure constructs of an extended TPB (i.e., attitudes, subjective norms, perceived behavioural control, and anticipated regret), and women's intentions to choose mastectomy or BCS. Objective data were collected on women's choice of surgery via the clinical breast teams. Multiple and logistic regression analyses examined predictors of surgery intentions and subsequent choice of surgery. RESULTS: The extended TPB accounted for 69.9% of the variance in intentions (p <.001); attitudes and subjective norms were significant predictors. Including additional variables revealed anticipated regret to be a more important predictor than subjective norms. Surgery intentions significantly predicted surgery choices (p <.01). CONCLUSIONS: These findings demonstrate the utility of an extended TPB in predicting and understanding women's surgery intentions and choices for early breast cancer. Understanding these factors should help to identify key components of interventions to support women while considering their surgery options

Resilience, vulnerability and adaptive capacity of an inland rural town prone to flooding: a climate change adaptation case study of Charleville, Queensland, Australia

Australia is currently experiencing climate change effects in the form of higher temperatures and more frequent extreme events, such as floods. Floods are its costliest form of natural disaster accounting for losses estimated at over $300 million per annum. This article presents an historical case study of climate adaptation of an Australian town that is subject to frequent flooding. Charleville is a small, inland rural town in Queensland situated on an extensive flood plain, with no significant elevated areas available for relocation. The study aimed to gain an understanding of the vulnerability, resilience and adaptive capacity of this community by studying the 2008 flood event. Structured questionnaires were administered in personal interviews in February 2010 to householders and businesses affected by the 2008 flood, and to institutional personnel servicing the region (n=91). Data were analysed using appropriate quantitative and qualitative techniques. Charleville was found to be staunchly resilient, with high levels of organisation and cooperation, and well-developed and functioning social and institutional networks. The community is committed to remaining in the town despite the prospect of continued future flooding. Its main vulnerabilities included low levels of insurance cover (32% residents, 43% businesses had cover) and limited monitoring data to warn of impending flooding. Detailed flood modelling and additional river height gauging stations are needed to enable more targeted evacuations. Further mitigation works (eg., investigate desilting Bradley’s Gully and carry out an engineering assessment) and more affordable insurance products are needed. Regular information on how residents can prepare for floods and the roles different organisations play are suggested. A key finding was that residents believe they have a personal responsibility for preparation and personal mitigation activities, and these activities contribute substantially to Charleville’s ability to respond to and cope with flood events. More research into the psychological impacts of floods is recommended. Charleville is a valuable representation of climate change adaptation and how communities facing natural disasters should organise and operate

A review of decision support, risk communication and patient information tools for thrombolytic treatment in acute stroke:Lessons for tool developers

Background: Tools to support clinical or patient decision-making in the treatment/management of a health condition are used in a range of clinical settings for numerous preference-sensitive healthcare decisions. Their impact in clinical practice is largely dependent on their quality across a range of domains. We critically analysed currently available tools to support decision making or patient understanding in the treatment of acute ischaemic stroke with intravenous thrombolysis, as an exemplar to provide clinicians/researchers with practical guidance on development, evaluation and implementation of such tools for other preference-sensitive treatment options/decisions in different clinical contexts. Methods. Tools were identified from bibliographic databases, Internet searches and a survey of UK and North American stroke networks. Two reviewers critically analysed tools to establish: information on benefits/risks of thrombolysis included in tools, and the methods used to convey probabilistic information (verbal descriptors, numerical and graphical); adherence to guidance on presenting outcome probabilities (IPDASi probabilities items) and information content (Picker Institute Checklist); readability (Fog Index); and the extent that tools had comprehensive development processes. Results: Nine tools of 26 identified included information on a full range of benefits/risks of thrombolysis. Verbal descriptors, frequencies and percentages were used to convey probabilistic information in 20, 19 and 18 tools respectively, whilst nine used graphical methods. Shortcomings in presentation of outcome probabilities (e.g. omitting outcomes without treatment) were identified. Patient information tools had an aggregate median Fog index score of 10. None of the tools had comprehensive development processes. Conclusions: Tools to support decision making or patient understanding in the treatment of acute stroke with thrombolysis have been sub-optimally developed. Development of tools should utilise mixed methods and strategies to meaningfully involve clinicians, patients and their relatives in an iterative design process; include evidence-based methods to augment interpretability of textual and probabilistic information (e.g. graphical displays showing natural frequencies) on the full range of outcome states associated with available options; and address patients with different levels of health literacy. Implementation of tools will be enhanced when mechanisms are in place to periodically assess the relevance of tools and where necessary, update the mode of delivery, form and information content