Tracy Long-Sutehall

Secondary analysis of qualitative data: a valuable method for exploring sensitive issues with an elusive population?

This paper aims to demonstrate the process of conducting a secondary analysis of primary qualitative datasets. Whilst there is a well-established tradition of carrying out a secondary analysis of quantitative datasets within social and health research, this has not been the case with qualitative datasets. Despite a recent growth in interest in the secondary analysis of qualitative data, very little information is available regarding the process, as publications tend to focus on the outcomes of analyses. A secondary analysis of 28 transcripts, sorted from two primary datasets containing longitudinal and cross-sectional interview data, was carried out. The choice of applying a secondary analysis fulfilled the aims of: (i) addressing a sensitive area of research; and (ii) accessing a research population that was elusive, factors that may be barriers to carrying out research in areas that are considered to be of a sensitive nature, or topic. Secondary analysis has potentially important implications for qualitative researchers who seek to investigate sensitive topics within health, not least of which is the opportunity it offers to facilitate the training of researchers at all levels.

Challenges in transition from intervention to end of life care in intensive care: a qualitative study

BACKGROUND Providing quality end of life care is a challenging area in intensive care practice. The most demanding aspect for doctors and nurses in this setting is not the management of care at end of life per se, but facilitating the transition from active intervention to palliation and finally, end of life care. Whilst there is understanding about some aspects of this transition, recognition of the complex and inter-related processes that work to shift the patients trajectory from cure to end of life care is required. This is important in order to work towards solutions for issues that continue to pose problems for health care professionals. OBJECTIVES To identify the challenges for health care professionals when moving from a recovery trajectory to an end of life trajectory in intensive care. DESIGN Qualitative methods of enquiry. METHODS AND SETTING Single semi-structured interviews with 13 medical staff and 13 nurses associated with 17 decedents who underwent treatment withdrawal in intensive care were carried out. Participants were drawn from two Intensive Care Units in a large university-affiliated hospital in England. FINDINGS Patients who died in intensive care appeared to follow a three-stage end of life trajectory: admission with hope of recovery; transition from intervention to end of life care; a controlled death. The transition from intervention to end of life care was reported as being the most problematic and ambiguous stage in the end of life trajectory, with potential for conflict between medical teams, as well as between doctors and nurses. CONCLUSIONS End of life care policy emphasises the importance of end of life care for all patients regardless of setting. These findings demonstrate that in intensive care, there is need to focus on transition from curative intervention to end of life care, rather than end of life care itself so that effective and timely decision making underpins the care of the 20% of intensive care patients who die in this setting each year.

Conversations in end-of-life care: communication tools for critical care practitioners

BACKGROUND Communication skills are the key for quality end-of-life care including in the critical care setting. While learning general, transferable communication skills, such as therapeutic listening, has been common in nursing education, learning specific communication tools, such as breaking bad news, has been the norm for medical education. Critical care nurses may also benefit from learning communication tools that are more specific to end-of-life care. STRATEGY We conducted a 90-min interactive workshop at a national conference for a group of 78 experienced critical care nurses where we presented three communication tools using short didactics. We utilized theatre style and paired role play simulation. The Ask-Tell-Ask, Tell Me More and Situation-Background-Assessment-Recommendation (SBAR) tools were demonstrated or practiced using a case of a family member who feels that treatment is being withdrawn prematurely for the patient. The audience actively participated in debriefing the role play to maximize learning. The final communication tool, SBAR, was practiced using an approach of pairing with another member of the audience. At the end of the session, a brief evaluation was completed by 59 nurses (80%) of the audience. SUMMARY These communication tools offer nurses new strategies for approaching potentially difficult and emotionally charged conversations. A case example illustrated strategies for applying these skills to clinical situations. The three tools assist critical care nurses to move beyond compassionate listening to knowing what to say. Ask-Tell-Ask reminds nurses to carefully assess concerns before imparting information. Tell Me More provides a tool for encouraging dialogue in challenging situations. Finally, SBAR can assist nurses to distill complex and often long conversations into concise and informative reports for colleagues.

International dialogue on end of life: challenges in the UK and USA

AIM The aim of this paper was to increase international collaboration on end of life care (EoLC) in critical care. Objectives included highlighting key challenges for critical care nurses in EoLC through a transcribed interview between a clinician, an educationalist and a researcher who all hold an EoLC focus. BACKGROUND EoLC continues to hold high profile within international health care arenas, including critical care units. Whilst end of life care remains well debated, it still presents many challenges for everyday practitioners. Dialogue with international colleagues and disciplines may provide opportunity for further understanding of this complex and sensitive area. CONCLUSIONS A key issues to arise from this venture of shared learning was that futility of treatment is problematic for all. This is further complicated in the USA where the concept of (family) autonomy strongly shapes EoLC decision making. RELEVANCE TO CLINICAL PRACTICE This paper demonstrates that there are opportunities for nurses within health care teams which could be addressed through education and professional development initiatives. Furthermore, knowledge from other disciplines can provide a useful lens through which to improve our understanding of EoLC.

Doctors’ and nurses’ views and experience of transferring patients from critical care home to die: A qualitative exploratory study

Background: Dying patients would prefer to die at home, and therefore a goal of end-of-life care is to offer choice regarding where patients die. However, whether it is feasible to offer this option to patients within critical care units and whether teams are willing to consider this option has gained limited exploration internationally. Aim: To examine current experiences of, practices in and views towards transferring patients in critical care settings home to die. Design: Exploratory two-stage qualitative study Setting/participants: Six focus groups were held with doctors and nurses from four intensive care units across two large hospital sites in England, general practitioners and community nurses from one community service in the south of England and members of a Patient and Public Forum. A further 15 nurses and 6 consultants from critical care units across the United Kingdom participated in follow-on telephone interviews. Findings: The practice of transferring critically ill patients home to die is a rare event in the United Kingdom, despite the positive view of health care professionals. Challenges to service provision include patient care needs, uncertain time to death and the view that transfer to community services is a complex, highly time-dependent undertaking. Conclusion: There are evidenced individual and policy drivers promoting high-quality care for all adults approaching the end of life encompassing preferred place of death. While there is evidence of this choice being honoured and delivered for some of the critical care population, it remains debatable whether this will become a conventional practice in end of life in this setting.

Research with bereaved families: A framework for ethical decision-making

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.

A national survey exploring views and experience of health professionals about transferring patients from critical care home to die

Background: Transferring critically ill patients home to die is poorly explored in the literature to date. This practice is rare, and there is a need to understand health care professionals’ (HCP) experience and views. Objectives: To examine (1) HCPs’ experience of transferring patients home to die from critical care, (2) HCPs’ views about transfer and (3) characteristics of patients, HCPs would hypothetically consider transferring home to die. Design: A national study developing a web-based survey, which was sent to the lead doctors and nurses in critical care units. Setting/participants: Lead doctors and senior nurses (756 individuals) working in 409 critical care units across the United Kingdom were invited to participate in the survey. Results: In total, 180 (23.8%) completed surveys were received. A total of 65 (36.1%) respondents had been actively involved in transferring patients home to die and 28 (15.5%) had been involved in discussions that did not lead to transfer. Respondents were supportive of the idea of transfer home to die (88.8%). Patients identified by respondents as unsuitable for transfer included unstable patients (61.8%), intubated and ventilated patients (68.5%) and patients receiving inotropes (65.7%). There were statistically significant differences in views between those with and without experience and between doctors and nurses. Nurses and those with experience tended to have more positive views. Conclusion: While transferring patients home to die is supported in critical care, its frequency in practice remains low. Patient stability and level of intervention are important factors in decision-making in this area. Views held about this practice are influenced by previous experience and the professional role held.

Evaluation of the experiences of family members whose deceased relative donated tissues at the NHSBT dedicated donation facility in Speke, Liverpool

Donation of human tissue for transplant and research has historically been facilitated within the hospital mortuary. In 2006 NHSBT Tissue Services opened the Dedicated Donation Facility [DDF], the first facility in the UK dedicated to the donation of tissues under strictly controlled conditions. Nine family members who had agreed and experienced the transfer of their deceased relative to the DDF for tissue donation participated in a service evaluation applying qualitative data collection methods and framework analysis. The evaluation aimed to: understand the decision-making process of family members who agreed to their deceased relative being moved to the DDR for tissue donation; identify any concerns that family members had; gather the views of family members regarding the ‘service’ provided to them by NHSBT Tissue Services. Family members were unaware of the possibility of tissue donation. The process of reasoning behind both agreeing to tissue donation and movement of the deceased to the DDF by family members was fundamentally, ‘the benefit to others’ that tissue donation would bring, and fulfilling the wishes of the deceased [when known]. Family decision making was facilitated by: (i) a positive rapport with the requester, (ii) satisfaction with the information provided to the family about what would happen, and (iii) trust in that what was being said would happen. Family members were satisfied with the service provided to them by Tissue Services and confident in agreeing to the transfer of their deceased relative to the dedicated facility for tissue donation.

Transferring patients home to die: what is the potential population in UK critical care units?

Objectives Most people when asked, express a preference to die at home, but little is known about whether this is an option for critically ill patients. A retrospective cohort study was undertaken to describe the size and characteristics of the critical care population who could potentially be transferred home to die if they expressed such a wish. Methods Medical notes of all patients who died in, or within 5 days of discharge from seven critical care units across two hospital sites over a 12-month period were reviewed. Inclusion/exclusion criteria were developed and applied to identify the number of patients who had potential to be transferred home to die and demographic and clinical data (eg, conscious state, respiratory and cardiac support therapies) collected. Results 7844 patients were admitted over a 12-month period. 422 (5.4%) patients died. Using the criteria developed 100 (23.7%) patients could have potentially been transferred home to die. Of these 41 (41%) patients were diagnosed with respiratory disease. 53 (53%) patients were conscious, 47 (47%) patients were self-ventilating breathing room air/oxygen via a mask. 20 (20%) patients were ventilated via an endotracheal tube. 76 (76%) patients were not requiring inotropes/vasopressors. Mean time between discussion about treatment withdrawal and time of death was 36.4 h (SD=46.48). No patients in this cohort were transferred home. Conclusions A little over 20% of patients dying in critical care demonstrate potential to be transferred home to die. Staff should actively consider the practice of transferring home as an option for care at end of life for these patients.

Vigilant attentiveness in families observing deterioration in the dying intensive care patient: A secondary analysis study

BACKGROUND Family support in intensive care is often focussed on what information is communicated to families. This is particularly important during treatment withdrawal and end of life care. However, this positions families as passive receivers of information. Less is known about what bereaved family members actually observe at end of life and how this is interpreted. AIM Secondary analysis study was conducted in order to explore the concept of vigilant attentiveness in family members of adult patients dying in intensive care. METHOD Secondary analysis of eight interviews sorted from two primary data sets containing 19 interviews with 25 bereaved family members from two intensive care units in England was undertaken. Directed content analysis techniques were adopted. FINDINGS Families are observant for physiological deterioration by watching for changes in cardiac monitors as well as paying attention to how their relative looks and sounds. Changes in treatment/interventions were also perceived to indicate deterioration. CONCLUSION Families are vigilant and attentive to deterioration, implying that families are active participants in information gathering. By clarifying what families notice, or do not notice during the dying trajectory in ICU, health care professionals can tailor information, helping to prepare families for the death of their relative.