Insights into the impact of clinical encounters gained from personal accounts of living with advanced cancer.

Aim To describe the impact of interactions with health care professionals revealed by people’s accounts of living and dying with cancer; to explore reasons for the observed effects; and thus, to consider the implications for practice. Background The importance of practitioner–patient interactions is enshrined within professional values. However, our understanding of how and why the consultation impacts on outcomes remains underdeveloped. Stories recounted by people living and dying with cancer offer important insights into illness experience, including the impact of contact with health services, framed within the context of the wider social setting in which people live their lives. From our recent study of distress in primary palliative care patients, we describe how people’s accounts revealed both therapeutic and noxious effects of such encounters, and discuss reasons for the observed effects. Method A qualitative study with a purposive sample of 19 primary palliative care patients: (8 men, 11 at high risk of depression). In-depth interviews were analysed using the iterative thematic analysis described by Lieblich. Findings Living with cancer can be an exhausting process. Maintaining continuity of everyday life was the norm, and dependent on a dynamic process of balancing threats and supports to people’s emotional well-being. Interactions with health care professionals were therapeutic when they provided emotional, or narrative, support. Threats arose when the patient’s perception of the professional’s account of their illness experience was at odds with the person’s own sense of their core self and what was important to them. Our findings highlight the need for a framework in which clinicians may legitimately utilize different illness models to deliver a personalized, patient-centred assessment of need and care. The work provides testable hypotheses supporting development of understanding of therapeutic impact of the consultation

Improving Teaching and Learning through Instructional Partnerships: Building Librarian Relationships with One-on-One, In-Depth Conversations

How can librarians work to improve their teaching and student learning and build relationships and community? One solution at the University of Wisconsin-Madison Libraries is the creation of an Instructional Partnerships Program. The Program enables librarians to work on individual instructional goals with the help of a partner. Partner librarians help each other improve their teaching through self-directed activities of reflection, discussion, and observation. Presenters will discuss how the Program was developed and how partnerships are currently helping librarians improve their teaching skills and build supportive relationships with colleagues. With input from attendees, presenters will consider how the Program might be used in a variety of library and campus settings. Attendees will participate in an activity illustrating how partner librarians can facilitate reflection and give feedback on teaching. Benefits and challenges will be highlighted. Resources and tools produced to support partnerships will also be shared

EAPC task force on education for psychologists in palliative care

It is argued that psychological aspects of care and psychosocial problems are essential components of palliative care. However, the provision of appropriate services remains somewhat arbitrary. Unlike medical and nursing care, which are clearly delivered by doctors and nurses respectively, psychological and psychosocial support in palliative care are not assigned exclusively to psychologists. It is generally expected that all professionals working in palliative care should have some knowledge of the psychological dynamics in terminal illness, as well as skills in communication and psychological risk assessment. On the one hand, palliative care education programmes for nurses and doctors comprise a considerable amount of psychological and psychosocial content. On the other hand, only a few palliative care associations provide explicit information on the role and tasks of psychologists in palliative care. Psychologists’ associations do not deal much with this issue either. If they refer to it at all, it is in the context of the care of the aged, end-of-life care or how to deal with grief

What counts as evidence? The communication of information about older people between health and social care practitioners

This paper draws on a study to provide an evidence base for strategies and effectiveness of the transfer of information about older people between health and social care practitioners at the health and social care interface. It reports on the development of a systematic approach to the review of the related research literature and presents some key findings. It goes on to discuss some methodological issues arising from a review covering both health and social care research. By locating this study - a systematic review - within the wider debate on evidence-based practice, this paper considers the nature and scope of this form of evidence alongside other forms of evidence and their use in professional practice. It concludes with some observations regarding the relevance of the findings from this study for both practice and further research

Research, recruitment and observational data collection in care homes : lessons from the PACE study

Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challenging and often underreported. This paper draws on the experiences of the PACE study, a cross sectional mortality follow back study conducted in six European countries. Results: Multiple challenges were encountered in creating a sampling framework and contacting, recruiting and retaining care homes in the PACE study. Recruiting a randomly identified, representative cohort from a stratified sampling framework was problematic, as was engaging with care homes to ensure high response rates. Variation in the funding of care homes across the six countries involved in the study may explain the additional challenges encountered in England. Awareness of the challenges encountered in England in implementing an international study in care homes can inform the design and implementation of future studies within care homes. Further discussion is needed to determine the barriers and facilitators to conducting research in care homes, and how this is shaped by the focus of the study

Place of death in the Czech Republic and Slovakia:a population based comparative study using death certificates data

Place of death represents an important indicator for end-of-life care policy making and is related to the quality of life of patients and their families. The aim of the paper is to analyse the place of death in the Czech Republic and Slovakia in 2011. Research questions were focused on factors influencing the place of death and specifically the likelihood of dying at home

What it means to be a palliative care volunteer in eight European countries:a qualitative analysis of accounts of volunteering

This paper addresses the stories of volunteers in hospice and palliative care (HPC) from eight European countries. The aims of the paper are to explore the experiences of volunteers in HPC from their insider perspective, to understand why volunteers choose to work in this field and to understand what it means to them to be involved in palliative care in this way. Stories were collected by the European Association for Palliative Care (EAPC) Task Force for Volunteering contacts in each of the eight countries. The majority of stories (n = 32) came from volunteers involved in different settings including adult patient’s homes, hospices, hospitals and care homes. Twenty volunteers were female, six were male, and ten did not give their gender. Stories were translated into English, and a qualitative framework analysis was performed. Volunteers were asked two questions: ‘What do you do as a volunteer?’ ‘What does volunteering mean to you?’ Three themes were identified from the data: (i) What volunteers do (ii) How volunteers approach their work and (iii) What working in HPC means to volunteers. The analysis revealed that common approaches to addressing and describing HPC volunteering in terms of tasks and roles could be expanded. To volunteers, it is not about tasks, but about a part of their life, the impact upon which can be significant. The results of this paper, therefore, add to the understanding of volunteers, in the sense of giving attention, being with, and of compassion as a community resource to patients and families in difficult situations. Theories about presence and presencing might have value in further underpinning this contribution to palliative care. Understanding the extent and depth of the volunteers’ experience will help to prevent the undervaluing of their contribution and increase the impact of their involvement

‘It’s not really our thing’:lessons in engaging care homes in palliative care research

Background: In England and Wales there are just under 400,000 older adults residing in care homes at any one time. Despite this, care home residents are often excluded from epidemiological studies and little routine data are collected within care homes. Data on palliative care provided by care homes is reported to the Care Quality Commission, but the quality of care is often locally determined. There is ongoing research in this area aimed at collecting representative, internationally comparable data, such as the PACE study. Aims: To discuss the challenges encountered in engaging and recruiting care homes across England in the PACE study, a retrospective, cross sectional survey of deaths over three months. The study collected questionnaire data from care home staff, general practitioners and relatives of care home residents on their experiences of palliative care. It aimed to include 200 deceased residents in fifty care homes over a one-year period. Methods: The research team reviewed the barriers and challenges encountered throughout the research process, including developing a representative sampling framework, obtaining ethical approvals, advertising the study and recruiting care homes. Results: There is a lack of clarity regarding where care homes are located within the scope of ethical approval bodies. Recruitment through random sampling was found to be less effective compared to recruitment through ENRICH networks. Barriers to care home participation included concerns regarding sharing information, fear of opening up to potential criticism, lack of resources and misunderstandings regarding confidentiality. Conclusions: The development of care home networks and informal contacts can improve the rate and extent of research involvement. Whilst representativeness can be attained, random samples and ensuring a rigorous sample through these methods of recruitment remains a challenge

Examining palliative and end of life care research in Ireland within a global context: a systematic mapping review of the evidence

Background: Globally the state of palliative care research remains uncertain. Questions remain regarding impact, funding, and research priorities. Building upon previous research, this review examines palliative care research in Ireland and contributes to a wider international debate on the state of palliative care research. Methods: A systematic mapping review was undertaken. Eight bibliographic databases and thesis repositories were searched from May 2012 to April 2017. Palliative care related search terms were combined with "Ireland" or "Irish" to increase search sensitivity. Inclusion criteria were applied by two independent reviewers. Descriptive analysis was completed using IBM SPSS v23. Thematic analysis was undertaken using a data-driven approach to develop new themes. Results: In total, 808 studies were screened and 151 papers from 117 studies were included for review. The top two areas of research focus included: (1) specific groups, services, and settings (n = 70); and (2) identification, communication and education (n = 37). A diverse variety of research methods were used including mixed methods (25%), surveys (22%), interviews (20%), and reviews (17%). One randomised control trial was conducted. The predominance of research papers focused solely on health care professionals (n = 35%), and the community setting was the most frequent location for data collection (41%). The majority of data was collected across the two jurisdictions of the Republic of Ireland (ROI) and Northern Ireland (NI) (37%), and 23% of studies included data outside of Ireland and the UK. The most frequent sources of funding were: consortiums (n = 40); government (n = 24); and philanthropic bodies (n = 20). Forty percent (n = 60) of papers were either unfunded or did not acknowledge a funder. Conclusions: There is a continued increase in palliative care research in Ireland with increased collaborative working nationally and internationally. The quantity and impact of research has increased from the previous review, which can be attributed to significant investment in research funding and collaborative networks. However, research gaps continue to exist including out of hours' care, physical and psychological symptom control, intervention studies, and the patient and family perspective. Areas for attention include the need to ensure knowledge exchange and demonstrate impact of the research on patient and family carer outcomes. © 2018 The Author(s)