'Was it worth it?' Intrathecal analgesia for cancer pain: A qualitative study exploring the views of family carers.

BACKGROUND: Intrathecal drug delivery is known to reduce pain in patients where conventional systemic analgesia has been ineffective or intolerable. However, there is little information regarding the effects of intrathecal drug delivery on quality of life and function in those with advanced, incurable cancer. AIM: Retrospective exploration of the views of bereaved carers regarding the physical and psychosocial effects of external tunnelled intrathecal drug delivery in patients with advanced incurable cancer. DESIGN: Thematic analysis of qualitative interviews with carers of deceased individuals who received percutaneous external tunnelled intrathecal drug delivery as part of their pain management, within two UK centres. SETTING: A total of 11 carers were recruited from two UK Palliative Care centres. Family carers of adult patients who had received external tunnelled intrathecal drug delivery analgesia for cancer pain and had died between 6 and 48 months prior to contact were included. Carer relatives who were considered likely to be too vulnerable or who had lodged a complaint about treatment within the recruiting department or who had been treated directly by the interviewer were excluded. RESULTS: In total, 11 interviews took place. The emerging themes were (1) making the decision to have the intrathecal - relatives described desperate situations with severe pain and/or sedation, meaning that the individual would try anything; (2) timing and knowing they were having the best - an increased access to pain and palliative care services, meant carers felt everything possible was being done, making the situation more bearable; (3) was it worth it? - the success of the external tunnelled intrathecal drug delivery was judged on its ability to enable the individual to be themselves through their final illness. Side effects were often considered acceptable, if the external tunnelled intrathecal drug delivery enabled improvements in quality of life. CONCLUSION: Carers perceived external tunnelled intrathecal drug delivery as most valuable when it improved quality of life towards the end of life, by reducing pain and side effects of conventional systemic analgesia to enable individuals 'to be themselves'. Under these circumstances, the carers judged significant side effects to be acceptable.

The spiritual concerns of people experiencing homelessness at the end of life.

BACKGROUND:: Spiritual care is a fundamental component of holistic end-of-life (EoL) care. AIM:: To explore what is known about the spiritual concerns of people experiencing homelessness towards the EoL. METHODS:: A narrative literature review was conducted from 1997 to June 2018 using CINAHL Complete, MEDLINE and PubMed. This identified just 11 relevant papers; eight papers report on studies based in the US, one paper reports on a study based in the Republic of Ireland (ROI), and two of the papers are literature reviews. RESULTS:: Both the ROI and US studies report the primacy of religious beliefs and spiritual experience for people experiencing homelessness considering EoL issues. However, the findings of studies from the US and the ROI are not necessarily transferable to the other populations of people experiencing homelessness. Furthermore, it cannot be assumed that the spiritual needs of people experiencing homelessness mirror those of the housed population. CONCLUSION:: There is a need for further research into the international perspective on the spiritual needs of homeless people towards the EoL, especially in secular countries.

Intimate partner violence and pregnancy intentions: a qualitative study.

AIM AND OBJECTIVE: In this qualitative study, we explored women's pregnancy intentions and experiences of intimate partner violence before, during and after pregnancy. BACKGROUND: Unintended pregnancies in the context of intimate partner violence can have serious health, social and economic consequences for women and their children. DESIGN: Feminist and phenomenological philosophies underpinned the study to gain a richer understanding of women's experiences. METHODS: Eleven women who had been pregnant in the previous two years were recruited from community-based women's refuges in one region of the UK. Of the 11 women, eight had unplanned pregnancies, two reported being coerced into early motherhood, and only one woman had purposively planned her pregnancy. Multiple in-depth interviews focused on participants' accounts of living with intimate partner violence. Experiential data analysis was used to identify, analyse and highlight themes. RESULTS: Three major themes were identified: men's control of contraception, partner's indiscriminate response to the pregnancy and women's mixed feelings about the pregnancy. Participants reported limited influence over their sexual relationship and birth control. Feelings of vulnerability about themselves and fear for their unborn babies' safety were intensified by their partners' continued violence during pregnancy. CONCLUSION: Women experiencing intimate partner violence were more likely to have an unintended pregnancy. This could be attributed to male dominance and fear, which impacts on a woman's ability to manage her birth control options. The women's initial excitement about their pregnancy diminished in the face of uncertainty and ongoing violence within their relationship. RELEVANCE TO CLINICAL PRACTICE: Women experiencing violence lack choice in relation to birth control options leading to unintended pregnancies. Interpreting the findings from the victim-perpetrator interactive spin theory of intimate partner violence provides a possible framework for midwives and nurses to better understand and respond to women's experiences of violence during pregnancy.

The experiences of patients with ascites secondary to cancer: a qualitative study.

BACKGROUND: Ascites secondary to cancer has a dramatic effect on all aspects of patients' lives. Healthcare professional surveys have shown that there is considerable variation in the management of ascites. AIM: To explore patients' experiences of living with ascites and its management. DESIGN: Qualitative research study using digitally recorded semi-structured interviews. SETTING/PARTICIPANTS: Twelve adult patients with ascites who, between them, had undergone 47 paracentesis procedures in hospitals and/or specialist palliative care units in Southern England. RESULTS: Symptoms were pain, discomfort and effects on appetite, digestion, breathing and mobility. All participants had experienced paracentesis in hospital or a specialist palliative care unit, and these experiences differed. They had views on what constituted a good procedure: setting, competence and pain control. They reported rapid improvement of symptoms after paracentesis. While some did not like the idea of a semi-permanent drain, those with them appreciated the convenience and not having to wait for repeated admissions or the recurrence of symptoms. The interval between ascitic taps was seen as a useful guide as to when a semi-permanent drain should be offered. Participants had mixed views on participation in a hypothetical randomised controlled trial of repeated ascitic taps versus semi-permanent drains. CONCLUSION: Patients' experiences of ascites management are variable and could be improved. These experiences can inform healthcare professionals. They have views on when semi-permanent drains should be offered and future research.

'Lost time'. Patients with early inflammatory/rheumatoid arthritis and their experiences of delays in Primary Care.

BACKGROUND: Early referral forms a crucial part in early inflammatory/rheumatoid arthritis (EI/RA) recovery. Delayed decisions to refer can lead to severe incapacity and emotional distress for individuals and family and feelings of lost time. How patients with EI/RA experience early referral decisions in Primary Care is an under explored area and warrants further investigation. AIM: To explore how patients newly diagnosed with EI/RA experienced their early contacts with Primary Care as they negotiated their journey through the referral process into secondary care. DESIGN AND SETTING: Qualitative face-to-face interviews with newly diagnosed EI/RA patients. METHODS: In-depth semi-structured interviews were conducted to explore patients' experiences of referral from first symptoms to General Practitioner referral. All participants were interviewed within 2 weeks of being diagnosed in Secondary Care. Data analysis was conducted using interpretative phenomenological analysis. FINDINGS: All participants in this study described having experienced struggles with their navigation through Primary Care towards diagnosis and specialist EI/RA services. This struggle comprised five key elements: 'family persuasion', 'lack of continuity in care', 'pushing for referral', 'strained relations' and 'lost time'. CONCLUSION: The delays experienced by patients when attempting to reach an early referral decision in Primary Care cause frustration for those presenting with EI/RA, partly because they do not feel heard. There is a significant impact on patients and their families when referral to specialist care is delayed.

Using Death Cafés as a method for discussing death and dying with third year student nurses.

BACKGROUND: Death Cafés are increasingly being held to facilitate discussions around death and dying and end-of-life issues with the public. They are thought to provide a safe, confidential and interactive space in which sensitive and supportive conversations about death and dying and end-of-life are shared. AIM: To explore nursing students' experiences of participating in a modified Death Café and its impact on their learning about death and dying. METHODOLOGY: A qualitative interpretive approach was employed using face-to-face semi-structured interviews with a purposive sample of third year student nurse volunteers. Thematic analysis was used to identify key themes. FINDINGS: Students viewed the modified Death Cafés positively, reporting that they were stimulating, informative and worthwhile for discussing sensitive topics related to death and dying. Five themes were developed from interview data: anticipation of the Death Cafés; timing of the Death Cafés within the curriculum; facilitation; trust within the group and getting involved; and reflection on, and for, practice. CONCLUSION: Students voiced a preference to disclose their feelings about death to an expert facilitator in the more informal environment of a Death Café because they thought they might be judged by their nursing lecturers. Effective facilitation of a Death Café session is critical to encourage self-scrutiny and disclosure by students, and the modified Death Café sessions achieved this. IMPLICATIONS: It is expected that students may feel vulnerable while participating in a Death Café, but it is important that the sessions enable students to be open about their feelings about death and the reciprocal sharing of inner thoughts and feelings about death and dying.

The consultant nurse - expert practitioner and much more.

The consultant nurse (CN) role is usually described in terms of four domains devised by the Department of Health - clinical practice, education and training, leadership, and research and service development. This study set out to explicate the diversity and complexity of CN roles in an NHS trust; to describe aspects of extraordinary practice and to identify perceived differences between this role and other advanced practice roles. Accounts were written by six CNs and subjected to concept mapping to facilitate identification of extraordinary practice. Four themes emerged: entrepreneurial activity and innovation; clinical autonomy and role dynamism; influential national and international research conduct; consultancy and education across discipline boundaries. These included descriptions of higher order skills that surpass usual requirements of 'expert' or 'advanced' practice. Comparisons with other advanced practice roles are drawn from the literature and data collected in this study. Differences between the roles have implications for sustainability.

Life's hard and then you die: the end-of-life priorities of people experiencing homelessness in the UK.

BACKGROUND: People experiencing homelessness often die young and without adequate support. In the UK, they fail to access palliative care services and their end-of-life priorities remain poorly understood. AIMS: To explore the end-of-life concerns, fears, preferences and priorities of a sample of people experiencing homelessness in the UK. METHODS: This is an interpretive phenomenology. Data collected through semi-structured, audio-recorded, face-to-face interviews with 21 homeless participants in the UK were analysed iteratively using thematic analysis. Findings have been interpreted through the lens of Merleau-Ponty's philosophy. RESULTS: Eight themes are reported: spiritual concerns; practical concerns; fear of needing care; fear of being forgotten; preference for dying suddenly; preference for being somewhere comfortable where people know me; prioritising autonomy and self-determination; and prioritising authenticity. CONCLUSION: A strengths-based, trauma-informed, person-centred, collaborative 'compassionate community' approach to care is recommended for people experiencing homelessness at end of life.

Academic and research misconduct in the PhD: issues for students and supervisors.

There are many pressures upon PhD students not least the requirement to make an original or significant contribution to knowledge. Some students, confronted with complex research processes, might adopt practices that compromise standards that are unacceptable within a research community. These practices challenge the PhD student-supervisor relationship and have implication for the individual, the supervisory team, the institution, the awarding body and the wider research context. Discussion relating to misconduct within the PhD is of international importance if the aim is to encourage and facilitate rigorous research practice. Cases involving academic and research misconduct, especially those occurring at PhD level, are likely to become more frequent as numbers of PhD students increase and will demand appropriate, defensible responses from supervisors. Misconduct during PhD study can be difficult to resolve because of lack of clarity in definitions, supervisor naiveté and failure to acknowledge students' decision making limitations. Using scenarios from the first author's supervisory practice to illustrate issues of concern for students and supervisors during PhD supervision, the authors aim to illuminate the importance of engagement with regulatory bodies; problems of knowledge and understanding transfer; culturally specific issues and meanings of academic theft.

Nurses' perceptions of care received by older people with mental health issues in an acute hospital environment.

A qualitative methodology using focus groups was used to access the views of 14 nurses in one NHS trust about caring for older people with mental health issues in an acute hospital setting. The findings suggest that communication about mental health disorders between healthcare professionals and with patients and relatives in the acute general hospital setting needs to be improved and that assessment throughout the care pathway is often inadequate.

Care professionals' views on undertaking care assessment in the community.

This study explores the understanding of care assessments by care staff, which, the author contends, can become simply a task and another workforce issue, rather than actively supporting older people. The policy background to care assessments is explored and qualitative research is described. Key themes emerged from interviews conducted with care staff working in various settings, among them communication, documentation and a needs-led approach. These are explored and recommendations for improved practice are made.

Nursing management of people experiencing homelessness at the end of life.

Homelessness is a complex and multidimensional issue often involving a combination of personal vulnerability, the limitations of social housing, and inadequacies in welfare support. Providing palliative and end-of-life care to people experiencing homelessness is challenging, both to individuals receiving care and nurses aiming to meet their complex needs. This article discusses what is understood by the concept of 'homelessness' and examines the barriers to accessing effective healthcare for people who are homeless and have life-limiting conditions. The authors review the research into end of life care for people experiencing homelessness and identify areas for further investigation, notably the lack of evidence regarding the end of life care priorities of these individuals. There is a focus on the availability of healthcare services for people who are homeless at the end of life, as well as the factors that should be considered if evidence-based healthcare services for this group of people are to be improved in the future.

The role of Philosophical Hermeneutics in contributing to an understanding of physiotherapy practice: a reflexive illustration.

This paper provides an overview of Philosophical Hermeneutics based on the work of German philosopher Hans Georg Gadamer. The concepts of the 'hermeneutic circle' as a vehicle for interpretation, management of the researcher's pre-understandings (prejudices), and the 'fusion of horizons' are introduced and illustrated by examples from the first author's research, before considering how rigour can be achieved in this type of research. The actual research study which aimed to explore how shared decision making and patient partnership are addressed by physiotherapists in the process of exercise prescription for patients with low back pain (LBP) is not the focus of this paper. However short descriptions of the study are used to explore issues surrounding a hermeneutic inquiry. For physiotherapists interested in research or considering undertaking an interpretive phenomenological inquiry, this theoretical discussion paper explores how Gadamer's philosophy offers a credible framework for undertaking such research.

Exercise prescription for patients with non-specific chronic low back pain: a qualitative exploration of decision making in physiotherapy practice.

BACKGROUND: Providing an effective exercise prescription process for patients with non-specific chronic low back pain (NSCLBP) is a challenging task. Emerging research has indicated that partnership in care and shared decision making are important for people with NSCLBP and calls for further investigation into the approaches used to prescribe exercise. OBJECTIVE: To explore how shared decision making and patient partnership are addressed by physiotherapists in the process of exercise prescription for patients with NSCLBP. DESIGN: A qualitative study using a philosophical hermeneutic approach. METHODS: Eight physiotherapists were each observed on three occasions undertaking their usual clinical activities (total n=24 observations). They conducted brief interviews after each observation and a later in depth semi-structured interview. Iterative hermeneutic strategies were used to interpret the texts and identify the characteristics and processes of exercise prescription for patients with NSCLBP. FINDINGS: The findings revealed how physiotherapy practice often resulted in unequal possibilities for patient participation which were in turn linked to the physiotherapists' assumptions about the patients, clinical orientation, cognitive and decision making processes. Three linked themes emerged: (1) I want them to exercise, (2) which exercise? - the tension between evidence and everyday practice and (3) compliance-orientated more than concordance based. CONCLUSIONS: This research, by focusing on a patient-centred approach, makes an important contribution to the body of evidence relating to the management of NSCLBP. It challenges physiotherapists to critically appraise their approaches to the prescription of exercise therapy in order to improve outcomes for these patients.

Exercise prescription for non-specific chronic low back pain (NSCLBP): a qualitative study of patients' experiences of involvement in decision making.

BACKGROUND: The culture of current clinical practice calls for collaboration between therapists and patients, sharing power and responsibility. This paper reports on the findings of a qualitative study of exercise prescription for patients with NSCLBP, taking into account issues such as decision making and how this accords with patient preferences and experiences. OBJECTIVE: To understand the treatment decision making experiences, information and decision support needs of patients with NSCLBP who have been offered exercise as part of their management plan. DESIGN: A qualitative study using a philosophical hermeneutic approach. METHODS: Semi-structured interviews with eight patients (including use of brief patient vignettes) was undertaken to explore their personal experiences of receiving exercise as part of the management of their NSCLBP, and their involvement in decisions regarding their care. FINDINGS: The findings provide a detailed insight into patients' perceptions and experiences of receiving exercise-based management strategies. Four themes were formed from the texts: (1) patients' expectations and patients' needs are not synonymous, (2) information is necessary but often not sufficient, (3) not all decisions need to be shared, and (4) wanting to be treated as an individual. CONCLUSIONS: Shared decision making did not appear to happen in physiotherapy clinical practice, but equally may not be what every patient wants. The overall feeling of the patients was that the therapist was dominant in structuring the interactions, leaving the patients feeling disempowered to question and contribute to the decision making.

Leading and co-ordinating a multi-nurse researcher project.

Leading and co-ordinating a research project is a complex undertaking involving management of people, processes, budget and material resources. The task is even more complex when there are nine nurse researchers collecting and analysing data in the midst of their practice. In this paper, Theresa Mitchell and Steve Jones describe the experiences of the project lead and co-ordinator responsible for planning and managing such a project in the Oncology Centre in Gloucestershire, UK. Using examples from the project, the authors share some of the potential problems encountered during research activities, and propose strategies and remedies to address them.

Leading and co-ordinating a multi-nurse researcher project.

Leading and co-ordinating a research project is a complex undertaking involving management of people, processes, budget and material resources. The task is even more complex when there are nine nurse researchers collecting and analysing data in the midst of their practice. In this paper, Theresa Mitchell and Steve Jones describe the experiences of the project lead and co-ordinator responsible for planning and managing such a project in the Oncology Centre in Gloucestershire, UK. Using examples from the project, the authors share some of the potential problems encountered during research activities, and propose strategies and remedies to address them.

Aromatherapy and massage intrapartum service impact on use of analgesia and anesthesia in women in labor: a retrospective case note analysis.

BACKGROUND: Over the past decade, interest in complementary therapies and alternative medicine has escalated among midwives and the general public in response to increased demand from expectant mothers for more choice, control, and continuity in labor. OBJECTIVE: The aim of this study was to explore if an aromatherapy and massage intrapartum service (AMIS) reduced the need for analgesia during labor. This article reports results related to the effects of an AMIS on type of analgesia chosen by women in labor, and on rates of anesthesia--one aspect of the full study. SETTING/LOCATION: The study was conducted in a general maternity unit in southwest England, UK. DESIGN: A quantitative research approach was taken, whereby contemporaneously completed service evaluation forms of 1079 women (601 nulliparous women and 478 multiparous women; AMIS group) were retrospectively analyzed in comparison with the birth records of an equal number of similar women (comparison group). Data analysis was achieved by entering data from the forms and comparison sample into an SPSS package and running statistical tests. RESULTS: In the AMIS group, overall analgesia usage was higher for transcutaneous electrical stimulation at 34%, compared with 15.9% (p<0.001 allowing for parity), and for nitrous oxide and oxygen at 87.6%, compared with 80.8% (p<0.001). Pethidine use did not differ after adjustment for parity at 30.1%, compared with 24.2% (p=0.27) in the AMIS and comparison groups, respectively. Rates were lower in the AMIS group for epidural anesthesia at 29.7%, compared with 33.8% (p=0.004 allowing for parity) in the comparison group; spinal anesthesia at 6%; compared with 12.1% (p<0.001) in the comparison group; and general anesthesia at 0.8%, compared with 2.3% (p=0.033) in the comparison group. CONCLUSIONS: Having an AMIS appears to have a positive impact on reducing rates of all types of intrapartum anesthesia. The Service is a beneficial addition to conventional midwifery practice that may influence mode of delivery and reduce general anesthesia rates.