Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites.

BACKGROUND: The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these 'Innovation Centres'. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites. METHODS: The study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014-2016) included: Quantitative outcome measures - Palliative Performance Scale [PPS] and Palliative Prognostic Index [PPI] (n = 2711); Integrated Palliative Outcome Scales [IPOS] (n = 1157); Carers Support Needs Assessment Tool [CSNAT] (n = 241); Views of Informal Carers -Evaluation of Services [VOICES-SF] (n = 102); a custom-designed Service Data Tool [SDT] that gathered prospective data from each site (n = 88). Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis. RESULTS: Comparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support. CONCLUSIONS: Macmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.

How do nurses in specialist palliative care assess and manage breakthrough cancer pain? A multicentre study.

OBJECTIVE: To gain a better understanding of how registered nurses working in specialist palliative care assess and manage breakthrough cancer pain. METHODS: A mixed-methodology study was undertaken in two stages-this paper reports findings from stage two. Anonymous postal questionnaires, designed based on themes identified in interviews undertaken during stage one, were sent to trained nurses working in ten specialist palliative care services in England. RESULTS: A total of 104 questionnaires were returned. Respondents were experienced nurses mainly working in inpatient settings. Some 82% of the nurses wanted more training on the assessment of breakthrough cancer pain. Although there were inconsistencies around the use of terminology, pain management appeared to be good. CONCLUSION: The use of terminology in the field of breakthrough cancer pain remains variable. However, this does not appear to have a negative impact on patient management, which was broadly in line with recently published consensus recommendations. There is a desire for more education within this area of practice.

Public attitudes to death and dying in the UK: a review of published literature.

BACKGROUND: Public attitudes are important in shaping public policy and the political will that determines future service provision. They also help to identify priorities for public education. This paper presents a review and synthesis of published literature on public attitudes to death and dying in the UK from 1990. METHOD: The approach to the review was systematic and involved searching for published research in five databases combined with reviewing references proposed by experts in the field and following up relevant citations from identified sources. The selected sources were assessed by the review team and analysed using a thematic approach. RESULTS: The review identified 22 sources reporting 19 studies which met our criteria for inclusion in the descriptive analysis. Three descriptive themes were identified: preferences relating to death and dying, attitudes to euthanasia and attitudes to life-sustaining treatments and interventions. CONCLUSION: The review outcomes challenge widespread assumptions about public attitudes to death and dying and identify the need for more rigorous work to better understand public views on dying and death. Such work is needed if public health services are to meet the expectations and reflect the wishes of individuals in this area in future.

Liminality as a framework for understanding the experience of cancer survivorship: a literature review.

AIMS: To report a narrative review of literature that drew on the concept of liminality as a framework for understanding the cancer experience. In doing so, we explored the utility of liminality for guiding research on experiences of cancer survivorship. BACKGROUND: The 'rites of passage' model uses the concept of liminality to explore transition. Taking cancer survivorship as a process, liminality may facilitate our understanding of this phenomenon. DATA SOURCES: Searches of Medline, PsycInfo, British Nursing Index, Cinahl, ASSIA, Web of Science, Cochrane Library and British Library databases were conducted, covering 1985-2011. Search terms were cancer and liminal* or rite* of passage. DESIGN: A narrative review, using a textual narrative approach, was undertaken to provide a comprehensive overview of the topic. REVIEW METHODS: Studies were arranged into groups according to the stage of the cancer trajectory on which they focused. Findings from each study were presented to highlight facets of the liminal experience at each stage. RESULTS: Ten studies were included for review. Liminality depicts the ambiguity and uncertainty often experienced by people affected by cancer. Although liminality appears useful for understanding experiences of cancer risk, diagnosis, treatment and the period following active treatment, little research has explored the concept with respect to long-term survivorship. CONCLUSION: Gaps in current evidence highlight the need for additional research to ascertain the utility of liminality for understanding experiences of long-term survivorship. Research exploring the personal and social implications of living a liminal life, at all stages of the cancer trajectory, is also warranted.

"Did the trial kill the intervention?" experiences from the development, implementation and evaluation of a complex intervention.

BACKGROUND: The development, implementation and evaluation of any new health intervention is complex. This paper uses experiences from the design, implementation and evaluation of a rehabilitation programme to shed light on, and prompt discussion around, some of the complexities involved in such an undertaking. METHODS: Semi-structured interviews were conducted with 15 trial participants and five members of staff at the conclusion of a trial evaluating a rehabilitation programme aimed at promoting recovery after stem cell transplantation. RESULTS: This study identified a number of challenges relating to the development and evaluation of complex interventions. The difficulty of providing a standardised intervention that was acceptable to patients was highlighted in the participant interviews. Trial participants and some members of staff found the concept of equipoise and randomisation challenging and there was discord between the psychosocial nature of the intervention and the predominant bio-medical culture in which the research took place. CONCLUSIONS: A lack of scientific evidence as to the efficacy of an intervention does not preclude staff and patients holding strong views about the benefits of an intervention. The evaluation of complex interventions should, where possible, facilitate not restrict that complexity. Within the local environment where the trial is conducted, acquiescence from those in positions of authority is insufficient; commitment to the trial is required.

Feedback of trial results to participants: a survey of clinicians' and patients' attitudes and experiences.

PURPOSE: There is growing interest in the provision of trial results to trial participants. However, there are a number of gaps in the research base relating to the closure of clinical trials and feedback of results to participants. METHODS: The aim of this research was to explore the practice of feeding back trial results to trial participants and to identify best practice in this area. Postal questionnaires were sent to members of the UK National Cancer Research Institute Clinical Studies Groups (NCRI CSG) and to patients over the age of 18 years who completed trial treatment (located in one Cancer Network) during a 16-month period (April 07-July 08). RESULTS: 145 NCRI CSG member surveys and 81 patient questionnaires were returned. The vast majority of all respondents supported the idea of offering results to trial participants. However, NCRI members and trial participants differed in their opinions about the timing and method for the provision of results. CONCLUSION: The results provide an insight into the views of these groups in relation to desire for results and practical aspects of results feedback which should inform further investigations into trial management and the practice of feedback of trial results.

Rehabilitation programme after stem cell transplantation: randomized controlled trial.

AIM: The aim of this study was to compare the effect of two methods of rehabilitation after stem cell transplantation on health and quality of life. BACKGROUND: Stem cell transplantation is routinely used in the treatment of haematological malignancy. However, it is an intensive treatment often associated with deterioration in wellbeing and the need for prolonged recovery. METHODS: During a 14-month data collection period (August 2005 to October 2006), patients who had had a stem cell transplant (n = 58) were randomly allocated to either a healthcare professional-led rehabilitation programme or a self-managed rehabilitation programme. The primary outcome measure, physical functioning as measured by the 36-item Short Form Health Survey, was recorded at baseline and 6 months after randomization. Secondary health and quality of life measures included the seven other dimensions of the 36-item Short Form Health Survey, General Health Questionnaire, Graham and Longman Quality of Life Scale and a Shuttle Walk Test. FINDINGS: There was no difference in change in Short Form 36 physical functioning scores between the two groups at follow-up (mean difference 0.19 points, 95% confidence interval 10.77-11.16). No evidence of a difference between the two modes of rehabilitation was observed for any of the trial outcomes. CONCLUSION: One approach for providing a flexible service may be for staff and individual patients to work together, selecting from a series of specified options a programme with the appropriate content and duration to meet that individual's needs.