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Background:Palliative care professionals have had to adapt to rapidly changing COVID-19 restrictions with personal protective equipment and physical distancing measures impacting face-to-face communication with patients and relatives.Aim:To explore the narratives of palliative care doctors working during the pandemic to understand their experiences at a personal and professional level.Design:In-depth narrative interviews were carried out via video call. Interviews were transcribed verbatim and analysed using a joint paradigmatic and narrative approach to elucidate common themes and closely explore individual narratives.Setting/participants:Eight palliative care doctors who had worked on a hospice inpatient unit in the UK before and during the pandemic were recruited from two hospices in Scotland.Results:Three intersecting themes are described, the most significant being moral distress. Participants articulated a struggle to reconcile their moral convictions with the restrictions enforced, for example, wanting to provide support to patients through physical proximity but being unable to. To differing degrees, this resulted in internal conflict and emotional distress. Two further themes arose: the first concerned a loss of humanity in interaction and a striving to re-humanise communication through alternative means; the second being a change in staff morale as the pandemic progressed.Conclusions:Restrictions had a considerable impact on palliative care doctors’ ability to communicate with and comfort patients which led to moral distress and contributed to decreasing morale. Future research could explore moral distress in palliative care settings internationally during the pandemic with a view to compare the factors affecting how moral distress was experienced.

BackgroundVirtual reality (VR) technology as a therapeutic intervention has been gaining attention in healthcare settings in recent years. Studies suggest that using the technology can help alleviate symptoms such as pain and anxiety and induce positive emotions for people in hospital. Managing symptoms and promoting emotional and psychological well-being are core palliative care goals of relieving suffering of people with life-limiting illness. Accordingly, VR may be highly beneficial for use in hospice care yet remains underdeveloped in such settings. This qualitative study aimed to trial the technology and consider what benefits may emerge for hospice in patients.MethodsA one-off VR session was offered to patients at a hospice in Scotland. Sessions were observed by a researcher and followed by qualitative semi-structured interviews to discuss the experience with those who took part. Interviews were audio recorded, transcribed and thematically analysed.ResultsNineteen hospice patients successfully tried an immersive VR experience. VR sessions were acceptable for people within the hospice environment. The majority of participants enjoyed the experience. Many expressed joy and delight at the process. VR holds possibilities for relieving symptoms such as pain and anxiety frequently experienced by people in hospices. Furthermore, the technology offers the capacity to reconnect with a previous sense of self and to allow respite through the capacity to transcend current reality and connect with another meaningful reality. This exploratory study offers a starting point for larger studies to investigate the utility of VR for hospice patients.

Background: Person-centred practice is inherently integrated in palliative care. However, it cannot be assumed that its underpinning values are lived out in day-to-day practice in a hospice. At St Columba’s Hospice, Edinburgh, the five-year strategy demonstrated commitment to person-centredness and this prompted an 18-month project focusing on the evaluation and development of a person-centred culture, taking a practice development approach. Aim: To implement a person-centred practice development research project to assess, evaluate and enhance person-centred culture within St Columba’s Hospice. Methods: The theoretical underpinnings of the programme were based on the Person-centred Practice Framework. A transformative practice development approach was employed to bring about change in individuals and teams. Twelve multidisciplinary team members from different departments across the hospice formed a core research project group, which was allocated 10 protected learning and development days over the 18-month period. To assess the existing culture, data were collected at the beginning of the practice development programme, including observation in practice and real-time interviews with patients and staff. The data were analysed using a participatory approach, with group members mapping the data collected against the Person-centred Practice Framework and undertaking creative hermeneutic analysis. Discussion: The project created and sustained a space to explore and expose person-centredness within the hospice and raised awareness of what person-centred culture means in day-to-day practice. Fourth-generation evaluation highlighted further areas for action, with teams developing their own action plans aimed at enhancing person-centred culture. Conclusion and implications for practice: The context of day-to-day practice in a hospice setting is complex, and developing person-centred culture is an ongoing process. Hospices can help their staff to flourish by providing the necessary space to reflect and for critical awareness of own practices to be heightened. This could encourage staff to embrace the contradictions inherent in the work they undertake and to learn from it in order to improve their own wellbeing.

Background Compassionate Neighbours, originated from the Public Health Palliative Care model, is a community development project aimed at developing mutually beneficial relationships that also helps build social capital and capacity within our communities. One hospice located in Scotland developed such an approach by expanding the role of volunteers within the hospice. Whilst hospices have long valued volunteers for their support in the provision of a de-medicalised, holistic approach to care, this new initiative reflects a longer-term, citizen-led investment that can equip communities to help one another during times of increased health need, loss and grief. Initiated and sustained during the COVID-19 pandemic, the project used an online blend of discussion, reflection and learning before matching Compassionate Neighbours with local people known to the hospice. Aim To capture ‘compassionate neighbours’ experience and the impact of transitioning from a traditional volunteering role to a role reflecting the ethos of compassionate citizen. Method Focus group inclusive of 10 volunteers that were part of the compassionate communities initiative and interviews with six people in the community they were ‘matched with’. Results Analysis of the data so far has highlighted how: The partnering process enabled the building of reciprocal relationships between volunteers and those they were matched with; vital to the success of the initiative. The Compassionate Neighbours negotiated, developed and sustained a mutually beneficial relationship with those they were matched with, reflecting the compassionate communities approach within the Public Health Palliative Care model. Conclusion Central to the project’s early success and future growth has been the emergence of a different kind of volunteer; one who sees him or herself as part of a community-led social movement involving ordinary people capable of responding in practical and compassionate ways to shared problems and needs in their own communities.

Background A collaborative project between the clinical and research teams at a hospice in Scotland highlights a person-centred model of Hospice at Home being developed and utilised with a focus on ‘what matters to patients and families’. Aims Evaluate the impact and potential benefit of Hospice at Home and identify the factors that underpin these. Support the development of a model of care that underpins the Hospice at Home service. Methods The evaluation part of the project was informed by a pluralist approach, allowing for evaluating the complexity of a service by taking into account its organisational context. The pluralist model encourages participation of stakeholders and takes account of varied data sources. Within this study this consisted of: Interviews and focus groups with managers and the new Hospice at Home team. Descriptive quantitative data. 15 patients’ case stories. Results During the period of the study 140 patients were admitted to the service. The most frequent reason for the service being requested was for psychological support, the average length of stay in the service was 17.1 days with the majority of patients staying in the service for 8.0 days. The model of care underpinning the new Hospice at Home service enabled person-centred care in patients’ homes. Three key elements of the model were identified: flexible and responsive care; relationship based care; and empowering patients and family members. The key outcomes of this model of care were identified as family members feeling supported and patients being able to be cared for and die in their preferred place. Conclusion The person-centred care model of the Hospice at Home service enabled a level and focus of care that adds a new layer to care within the community. This person-centred model of care may be meeting the needs of patients with less clinical/medical palliative care needs and be more appropriate than the more traditional medical model.

Background Across the UK, more people are projected to die in community settings over the next two decades. The role of the hospice inpatient unit (IPU) needs to be better understood in light of these shifts. The term complex needs is used for patients admitted to IPU, however, there is little clarity around these needs and how they trigger admission. Aim To understand why patients are admitted to IPU and to describe the palliative care services available to them beforehand. Method Prospective mixed methods study. Data were collected in two hospices in one city of Scotland. We examined case notes of 259 patients admitted to the IPU over four months and conducted 40 semi-structured interviews. (22 patients or a relative proxy, 11 health care professionals, 7 pro-forma interviews-source of referrals). Results Mean age was 71 years, 53% were female; 47% male. Most patients admitted were Scottish or White British (95%). Most were living with another person at the time of admission (72%); 28% lived alone. The vast majority had cancer (95%). Phase of illness was judged as deteriorating or unstable for over two-thirds at the time of admission. Most patients were receiving specialist palliative care support prior to admission – 73% had a community palliative care CNS (Clinical Nurse Specialist). Just under half had district nurse support (48%). Over one-fifth (21%) had no prior community palliative care involvement; most of these patients were referred from the hospital (81%). Length of stay was 12 days (median). 68% of admissions were for end-of-life care, with the patient dying during the admission. The hospice inpatient unit was the documented preferred place of death for 56% who died in that location. Thematic analysis of the qualitative data identified the key reasons for admissions, symptom control, anxiety and fear, social isolation and end-of-life care. Conclusion Admission to inpatient hospice is a last resort and often a response to a crisis situation. Greater palliative care support in home settings is needed so that more patients can remain at home when that is their preference.

Background The decision to undergo chemotherapy for incurable cancer demands informed discussions about the risks and benefits of proposed treatments. Research has shown that many patients have a poor grasp of these factors. Methods An evaluation of the patient experience of palliative chemotherapy decision-making was undertaken. Patients with lung or gynaecological cancers were surveyed about their decision, what they understood about its risks and benefits, and how supported they felt. Results A total of 29 people with lung cancer (n = 21) or gynaecological cancer (n = 8) completed questionnaires. The majority felt sure about their decision, though many were less sure of the risks and benefits of treatment. Unprompted comments revealed significant nuance, including that the decision to undergo chemotherapy may not necessarily have felt like a choice. Conclusions Our positive findings may reflect participant selection bias, or could represent genuine comfort in decision-making in Scottish oncology clinics. Further research is needed.

We describe the findings of a qualitative longitudinal interview study of a group of initially community-dwelling frail older people, and their informal and formal carers. We used a narrative approach to explore the role that narrative may have for people living with frailty. This has been less explored comparative to the experiences of those living with chronic illness. The frail older people told stories of their experiences that revealed three distinct shapes or typologies. These were eitherstable,unbalancingoroverwhelmed, and related to how the person managed to adapt to increasing challenges and losses, and to reintegrate their sense of self into a cohesive narrative. Each is illustrated by an individual case story. Frailty is described as both biographically anticipated yet potentially biographically disruptive as older people may struggle to make sense of their circumstances without a clear single causative factor. Findings are discussed in relation to biographical disruption and reconstruction in chronic illness and the rhetoric around ‘successful ageing’. We conclude by drawing attention to the complex individual and social factors that contribute to the experience of living with frailty in later life.

Caring for a relative or friend at the end of life can be rewarding but all-encompassing. These caregivers are often not identified, meaning their diverse needs remain unmet, and the lack of assessment, support and planning increases the likelihood of crisis and burnout. The Carers (Scotland) Act 2016 places responsibility on local authorities to implement such a plan, which will be fast-tracked for carers supporting someone at the end of life. Our research described the factors which might influence this planning, triangulating primary focus groups with 15 carers and secondary qualitative data from transcripts with 30 carers, all of whom who had looked after someone with a terminal illness. Analysis was iterative, and constant comparative analysis of the secondary data informed the primary focus groups. Three main themes were identified; 1. The importance of early identification as a carer to enable timely assessment and support. 2. Carers experience isolation and loneliness which limits opportunities for support. 3. Responding in a timely fashion to carer assessment and support is vital to avoid crises. This research confirms that identifying carers early in the illness trajectory, ideally at diagnosis, is vital to avoid carer burnout. Health and social care providers have a key role in identification and should ensure, where possible, that carer needs are dynamically assessed, supported and documented. Finally, caring does not end after death, it extends into bereavement. Thus, we need to consider system and cultural change to ensure the experiences and needs of carers are addressed and valued.

The objective of the review was to synthesize the best available qualitative evidence regarding the experiences of stroke survivors, their families and unpaid carers, about goal setting within stroke rehabilitation.Clinical guidelines recommend person-centered goal setting in stroke rehabilitation but many barriers exist to its implementation. Individual differences and preferences, of both the stroke survivor and practitioner, may influence involvement in goal setting. A stroke survivor's relationship with close family members and unpaid carers can be powerful and could influence rehabilitation, recovery and goal setting.The participants of interest were adults (over 18 years) who had experienced a stroke and undergone rehabilitation, and their families and unpaid carers. The phenomena of interest were the experiences of goal setting within stroke rehabilitation for stroke survivors, their families and unpaid carers. The context was stroke rehabilitation in acute and community hospitals, inpatient rehabilitation units and the community. Studies considered for this review were qualitative primary research studies and the qualitative portion of mixed methods research.A three-step search strategy was used to identify English language qualitative primary research studies (both published and unpublished) through November 2017. Two reviewers independently appraised the included studies using the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. Studies were included if they achieved 50% "yes" results for the methodological assessment. Data were extracted from the included papers using the standardized JBI qualitative data extraction tool. Data were synthesized using meta-aggregation.Four studies were included in this review, from which 44 findings were extracted. These were aggregated into 12 categories and four synthesized findings: (1) Person-centered goal setting is possible but often does not occur; (2) Practitioners shape the context of goal setting; (3) Practitioners need to listen to the person and know "who they are" - there is a need for an individualized approach to goal setting; (4) Recovery is ongoing and unpredictable. No findings reporting the experiences of goal setting from the perspective of family or unpaid carers were found, therefore all findings represent stroke survivor experiences. The role of goal setting in self-management could not be extracted from the data.Person-centered goal setting within stroke rehabilitation is both possible and rewarding but often does not occur. Goal setting contributes to the post-stroke rehabilitation experience and can be positively or negatively influenced by practitioners. Maintaining hope and a sense of forward momentum in recovery after stroke is perceived by stroke survivors as important and could be supported using goal setting that is tailored to the individual's needs and preferences. Future research should focus on refining individualized methods of goal setting in stroke rehabilitation and the role of the practitioner in this, including what skills are needed and how they can be acquired. The identified gaps in the literature about family members' and unpaid carers' experiences, and the role of goal setting in self-management, warrant further research.

Background Several studies have confirmed positive outcomes using virtual reality (VR) for clinical conditions such as anxiety disorders, phobias, post-traumatic stress syndrome, eating disorders and pain management. VR has also been employed to promote emotional wellbeing and induce positive emotions for people in hospital. Research into the clinical applicability of VR in health care settings is still in its infancy. Until now, little research has focused on VR in a hospice setting with one other hospice in the UK that has started a small research pilot. The aim of this study is to explore the feasibility, acceptability and potential benefits of using VR for people with incurable long term conditions in a hospice setting. Methods This was a prospective observation and interview study of hospice patients’ experiences of taking part in a 30 minute VR session where they were immersed in a virtual world. Results Observational data of VR sessions with 20 patients showed that most people respond positively. Reactions were of joy, happiness and amazement or of feeling peaceful and calm. Some people voiced that they were able to forget symptoms. These participants valued being able to visit somewhere that they now never would while others were able to visit places, often from younger days, that they wished to see again, expressing that it allowed recourse to a happy time of life. Some participants’ responses were more muted. Those participants would have preferred to have further opportunity to think about where they would like to visit having experienced a session. Some people, however, declined to take part stating that they saw no need for it, or that they felt that it was new and not for them. Conclusion Preliminary findings are encouraging with VR well received by staff and patients alike. VR may best be targeted to people who are most likely to benefit from the technology.

ObjectivesThere has been a recent drive to embed rehabilitation within palliative care. The concept of rehabilitative palliative care has been advocated to help patients preserve function and independence, through greater patient enablement and self-management. Such an approach requires engagement from all members of the palliative care team. There is a lack of understanding of such viewpoints. The objective of this research was to explore hospice-based palliative care professionals’ understanding and perceptions of rehabilitation.MethodsQualitative semi-structured interviews were conducted. Eighteen hospice-based healthcare professionals were recruited from a hospice in central Scotland. Interviews were audio-recorded, transcribed and thematically analysed.ResultsOverall, participants clearly articulated the underlying values and benefits of rehabilitative palliative care. Emphasis was placed on ensuring that rehabilitation was appropriately tailored to each individual patient. There was more ambiguity regarding the pragmatic implementation of rehabilitative palliative care, with a number of barriers and facilitators identified.ConclusionsThe findings suggest that hospice-based palliative care professionals would be receptive to further implementation of rehabilitative palliative care. A lack of conceptual clarity among palliative care professionals may be a barrier to the effective implementation of rehabilitative palliative care. At an organisational level, this would require clarification of the approach, and additional training involving all members of the multidisciplinary team.

Non-profits and social enterprises face significant financing challenges that include problems in securing public funding, unpredictability and discontinuities in grant funding from foundations and charities, and the difficulty of generating earned income. Crowdfunding has emerged as a promising new option for securing large numbers of small donations from the socially conscious crowd for the needs of projects run by both established non-profit organizations as well as socially focused startups. This chapter reviews the current state of academic research on the topic of social venture and non-profit crowdfunding, and makes suggestions for future research in this area.

The traditional approach to research ethics is to ensure that all ethical issues are adhered to through the scrutiny of research proposals by research ethics committees, themselves sitting within national research governance frameworks. The current approach implies that all potential ethical issues can be considered and mitigated prior to the research. This article is a perspective piece whereby we consider how this approach, on its own, is not enough to ensure ethical practice. We draw attention to the limitations of current ethical procedures in the inherent detachment between the researcher and research participants. We argue that applying a person-centred approach to research ethics allows for contextual and situational factors and places the relationship between research participants and researcher as central.

Background In a hospice inpatient unit (IPU), registered nurses (RNs) raised concerns about time taken to administer controlled drugs impacting on patient waiting time for pain and symptom control and limiting the time available for other RN activities. Aim To enhance person-centred practice around pain and symptom control by using a practice development (PD) approach to implement single nurse controlled drug administration (SNCDA) in a hospice IPU. Method A Practice Development approach using collaboration, inclusion and participation (McCormack, Manley & Titchen, 2013) was used throughout. Preparatory phase A literature review and staff engagement sessions to elicit an overview of values and beliefs informed policy, procedure and risk assessments. A programme of education was developed in collaboration with the MDT including facilitated critical reflection. Programme implementation phases IPU managers undertook programme Self–selecting Band 5 RNs undertook programme Joint working with another local hospice which has offered a peer review and ensured sustainability of the education programme. Evaluation phase Claims, concerns and issues (Guba & Lincoln, 1989) exercise around prescribed medication with all RNs. Patient and family experience with pain and symptom medication sought through direct engagement and review of general hospice feedback Focus groups with RNs Review of CD administrations procedure pre– and post–implementation Mapping against the Person–centred Practice Framework (McCance & McCormack, 2017). Results RNs described moving through a period of anxiety to feeling overall confidence, autonomy, safety, trust and eventual sense of liberation and empowerment through the process. They reported reduced waiting and quicker response times for patients requiring controlled drugs since the commencement of the SNCDA programme. In a 24 hour period 14 hours of nursing time was released for other activities. Conclusion SNCDA has a positive impact for patients and RNs in supporting pain and symptom management. A PD approach supported staff to embrace SNCDA and enhanced person-centred practice.

CONTEXT: Quality care for people living with life-limiting illnesses is a global priority. A detailed understanding of the varied experiences of people living and dying with different conditions and their family and professional caregivers should help policymakers and clinicians design and deliver more appropriate and person-centered care.OBJECTIVES: To understand how patients with different advanced conditions and their family and professional caregivers perceive their deteriorating health and the services they need.METHODS: We used a narrative framework to synthesize eight methodologically comparable, longitudinal, and multiperspective interview studies. We compared the end-of-life experiences of people dying from cancer (lung, glioma, and colorectal cancer), organ failure (heart failure, chronic obstructive pulmonary disease, and liver failure), and physical frailty and those of their family and professional caregivers in socioeconomically and ethnically diverse populations in Scotland.RESULTS: The data set comprised 828 in-depth interviews with 156 patients, 114 family caregivers, and 170 health professionals. Narratives about cancer typically had a clear beginning, middle, and an anticipated end. Cancer patients gave a well-rehearsed account of their illness, hoping for recovery alongside fear of dying. In contrast, people with organ failure and their family caregivers struggled to pinpoint when their illness began, or to speak openly about death, hoping instead to avoid further deterioration. Frail older people tended to be frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying.CONCLUSION: These contrasting illness narratives affect and shape the experiences, thoughts, and fears of patients and their carers in the last months of life. Palliative care offered by generalists or specialists should be provided more flexibly and equitably, responding to the varied concerns and needs of people with different advanced conditions.

Background Person centred care is inherently integrated into palliative care as one of its cornerstones. Having developed from a pioneering grass route movement to an established organisational structure the culture of palliative care has become increasingly influenced by routine and the need for standardised practice. This has challenged the capacity to foster creative, flexible and dynamic approaches to care that put the person at the centre. McCormack and McCance’s Person Centred Practice Framework (2017) is a theoretical framework that addresses such limitations. Using this framework as an underpinning theory in our research we aimed to assess and develop a person centred culture in a hospice. Aim To evaluate and develop a person centred culture in a hospice setting. Method Participatory action research using a cooperative inquiry approach involving key stakeholders within the hospice. Research Group established with staff members being co–researchers Values and beliefs exercise around the meaning of person centred care across the hospice. Baseline data collection including observations and interviews to identify the existing culture. Analysis of base line data and mapping against the Person Centred Practice Framework. Identifying key areas for further exploration and development. Development and implementation of an action plan. Results Staff relationships and communication, identified as a key area needing further exploration. A fourth generation evaluation (Guba and Lincoln 1989) workshop with all teams in the hospice highlighted a lack of time for staff to reflect on practice and engage in meaningful relationships with each other and thus neglecting the positive impact of effective teamwork. Action plan, including development of stronger team relationships was implemented. Conclusion McCormack and McCance (2017) consider the existence of ‘healthful relationships’ as central to a person-centred culture. This research highlights a practical approach for teams to explore their own micro level structures in order to develop healthful relationships in teams.

People are living longer, but with increased age comes greater frailty and multi-morbidity. This secondary data analysis examines transcripts from interviews with 11 frail older people and 6 informal carers to explore emotion in relation to frailty and deteriorating health. Anger and frustration were frequently experienced with declining functional ability; sadness occurred with social isolation, loss of autonomy and independence; anxiety was evident when transition to a care home was discussed; and contentment was described when connecting with others. Reluctant acceptance emerged as a coping strategy. Insights gained from analysing emotion may inform communications training courses for community nurses, though further research is required.

This chapter explores the positive attributes of Virtual reality (VR) in relation to the language classroom. It includes technologies that allow the user a first-person view of the virtual world. The chapter speaks to students and teachers and asked them their opinions of virtual reality as a language learning tool. It explores teacher and student perceptions of VR in education. B. Dalgarno and M. Lee describe five affordances of VR in education: enhanced spatial knowledge of the explored domain, tasks that would not be possible in the real world, enhanced motivation and engagement, contextualized learning, and, effective collaborative learning. The world of VR falls into several quite distinct genres, each with its own challenges. One of the technical challenges is latency. The virtual world loses its credibility if some objects can be picked up but others cannot, or if different parts of the world lack coherence.

General practices in the United Kingdom are encouraged to have a protocol for the identification of carers and a mechanism for social care referral. However, a minority of carers are identified and those caring for someone with a terminal illness often cope until the situation becomes overwhelming. Earlier identification could enable more timely support. The aim of this project was to model and pilot a systematic approach to identify, assess and support carers of people with supportive and palliative care needs in primary care.The intervention was modelled on the Medical Research Council complex intervention framework with a preliminary theoretical phase, which has been reported elsewhere. In this study, which lasted 12 months, four general practices were recruited. Each practice identified a 'carer liaison' person to take the lead in identifying carers, followed by assessment and support using a toolkit modelled from the earlier phase. Qualitative evaluation interviews were conducted with carers who had received the intervention and the carer liaisons and general practitioners in the pilot practices. A stakeholder event was held to disseminate and deliberate the findings.The practices' populations ranged from 5840 to 10832 patients and across the four practices, 83 carers were identified. Thirty six carers were identified from practice registers (disease - 16; palliative care - 9; carer - 11; advanced care plan - 12), whilst 28 were identified opportunistically by practice staff at appointments or at home. Seven carers self-identified. Overall, 81 carers received the carer pack and 25 returned the Carer Support Needs Assessment Tool (CSNAT) form. Eleven carers received a follow up call from the practice to discuss support and 12 were also referred/signposted for support. Qualitative interviews suggest carers valued connection with their practices but the paperwork in the toolkit was onerous.This approach to identifying and supporting carers was acceptable, but success was dependent on engagement within the whole practice. Carers did not tend to self-identify, nor ask for help. Practices need to proactively identify carers using existing opportunities, resources and computer systems, and also adopt a public health approach to raise carer awareness and perceived support within their communities.

This paper seeks to establish the state of knowledge of Knowledge Management (KM) among Library and Information Services (LIS) professionals, the extent to which they find positions in the KM sector, the extent to which they practise identifiable KM processes in their work and the adequacy of educational preparation and professional development opportunities. It draws on research begun in 2005, which included a survey of advertisements for KM positions, a survey of KM courses in Australia; and an online questionnaire for LIS and KM practitioners and educators. The literature review highlights knowledge, skills and attributes associated with KM, and notes some overlap with those required for the LIS profession. The job analysis suggests that there may be some overlap between LIS and KM practice and between what are perceived to be LIS and KM core competencies, but that the two are quite distinct. Findings from the survey of KM courses suggest only a limited amount of overlap between what are considered by ...

REVIEW QUESTION / OBJECTIVE The overall aim of this qualitative systematic review is to explore the personal experiences of stroke survivors, their families and unpaid carers in goal setting in stroke rehabilitation. The objectives of this review are to: 1. Describe the experiences of stroke survivors, their families and unpaid carers in goal setting in stroke rehabilitation 2. Identify whether stroke survivors, their families and unpaid carers consider the impact of goal setting on the person-centeredness of the rehabilitation approach 3. Ascertain whether stroke survivors, their families and unpaid carers consider if goal setting enables them to effectively self manage their condition. INCLUSION CRITERIA Types of participants This review will consider studies that include adults (18 years old and over) who have experienced a stroke and undergone rehabilitation (as an inpatient or an outpatient), and their families and unpaid carers. Family members who care directly for their stroke survivor spouse or relative will be included. Family members who do not provide direct care but live with their stroke survivor spouse or relative will be included. Others who provide direct care, but are not paid or related to the stroke survivor, will be included. Paid carers (non-family) or family members who neither live with nor care for a stroke survivor will be excluded. Phenomena of interest Studies that investigate the experiences of stroke survivors, their families and unpaid carers regarding goal setting within rehabilitation will be considered. Studies investigating stroke rehabilitation goal setting as the entire focus, or those where it TRUNCATED AT 250 WORDS

Background The experiences of people with cancer and organ disease have been described across different dimensions of need as they approach death. Such information is lacking for frail older people approaching death, but could highlight how a palliative approach might be relevant for this population. Methods Cognitively intact, community dwelling adults considered to be moderately or severely frail were recruited from a medical day hospital. Those recruited nominated an informal carer and case-linked professional. Qualitative in-depth serial interviews with older people and their informal carers were conducted over an 18 month period, and single interviews with case-linked healthcare professionals. Interviews were recorded, transcribed and narrative analytical techniques were used to compile case studies. Results Thirty-four participants (13 patients, 13 informal carers and 8 healthcare professionals) completed 40 individual, 14 joint and 8 professional interviews. Five patients died during the study. The analysis highlighted a dynamic balance between losses and adaptations. Three typical patterns of multi-dimensional change emerged. 1) Maintenance of psychological and existential well-being with a gradual social decline mirroring the physical deterioration. 2) a gradual reduction in both psychological and existential well-being. 3) a marked downturn in social, psychological and existential well-being before death. Frail older people sustained their well-being through maintaining a sense-of-self, garnering support from carers and community structures, and focusing on living from day to day. Their well-being lessened when they lost their sense-of-self, feeling alienated from the world, and confused over the cause of their circumstances. Death remained distant and ‘undiagnosed’. Social and community frameworks were essential for supporting their well-being. Conclusions Multidimensional end-of-life trajectories for frail older people differed from those with other conditions. Alleviating psychological, social and existential distress should be a priority of care as frail older people reach the end of life. The current palliative care model is problematic for this group. Care should address future concerns and not necessarily involve a focus on death or place of death.

Unlogged buffers are used to ameliorate impacts to riparian areas in timber production forests. One function of these buffers is to protect the biodiversity of riparian areas. We measured bat activity in buffered streams with ultrasonic detectors across four different stream orders in logged, regrowth and mature forests (60 sites). Bat activity, foraging rates and species richness were similar in buffered streams surrounded by logged, regrowth and mature forests, suggesting that riparian areas effectively provide habitat for foraging and commuting bats in selectively logged forests. Vespadelus pumilus was the only species that responded to logging history, with decreased activity in mature forests. We found higher activity on larger rather than smaller order streams, a pattern also not affected by logging history. Bat activity along paired forest trail flyways on upper slopes (60 sites) was measured simultaneously with riparian flyway activity (for a total of 120 sites) to determine the importance of riparian areas relative to other available flyways. Activity was higher on upper slopes than on small streams, but similar to levels on larger streams. Total foraging activity was similar between riparian zones and upper slopes. Upper slopes contained higher species diversity, with Chalinolobus gouldii, Miniopterus schreibersii, Mormopterus norfolkensis, Scotorepens sp., Vespadelus pumilus and, to a lesser extent, Vespadelus darlingtoni detected more often than along streams. Other species (Rhinolophus megaphyllus, Nyctophilus spp. and Miniopterus australis) were not affected by topography. Estimates of total vegetation cover and, in particular, rainforest cover, were negatively associated with bat activity, highlighting the need for management of forest ‘clutter’ in regrowth forests for a suite of bat species. Streams and forest trails provide areas of lower clutter, which assist in maintaining high species diversity in regrowth forests. Our results support the use of riparian buffers, and point to the need for greater recognition of tracks on upper slopes as important habitat.

Interviewing patients over the course of their illness can give a much better picture of their experience than single interviews, but the approach is rarely used. Scott Murray and colleagues explain how to get the most from it

Introduction The “danse macabre” has been depicted in Europe since medieval times. Providing good end-of-life care for all patients, whatever form their last dance takes, is a global challenge. Aim(s) and method(s) To explore typical narratives of living with and dying from advanced illnesses, to provide insights into providing effective care. Secondary analysis of data from 8 qualitative longitudinal studies: 3 cancer; 3 organ failure; 1 frailty; 1 with South Asian participants from all 3 trajectories. Patients were interviewed up to 4 times over 18 months. Researchers from each study reviewed the data using a narrative analytic framework. The narratives were initially synthesised by illness trajectory, then compared and discussed at analysis workshops. Results The dataset was 828 in-depth interviews with 156 patients. Cancer narratives had a well-rehearsed beginning, middle and anticipated end, with dual themes of hope for recovery alongside fear of dying. People with organ failure struggled to tell their story, being unclear when the illness began, or how one event linked to another. Fewer spoke about death, hoping instead to avoid further deterioration. Frail older people9s narratives often began with a specific event in combination with ageing, yet lost salience amidst increasing losses and future fears. Death was only fully anticipated very near the end, and feared less than nursing homes or dementia. Conclusion(s) Patients from different illness groups gave very different accounts. Consequently the cancer-based model of end-of-life care seems poorly suited to the needs of those dying in other ways. Understanding how different patient groups perceive their deteriorating health and approaching death will inform appropriate future palliative care for all.

Background Palliative care services have widened beyond cancer in recent years yet frail older adults rarely receive such services. There is a need to understand the multidimensional end of life experiences of this group in order to assess how or if a palliative approach could be beneficial. Aims To describe the changing multidimensional experiences of frail older adults towards the end of life. Methods 76 in-depth qualitative interviews were carried out with 13 core participants and their key formal and informal carers repeatedly for a period lasting up to 18 months. Core participants were cognitively intact, community dwelling older adults considered to be moderately or severely frail using a clinical frailty scale. The interviews were participant led, audio-recorded and fully transcribed. The ‘voice centred relational’ narrative method, incorporating analyses of multidimensional experience, was used to compile case studies. Results Narratives of frail older people approaching the end of life illustrate patterns of multidimensional experience that differ from the end of life trajectories of other groups. All participants experienced physical decline however three possible patterns of psychological, social and existential experience emerged. These were: stable; regressive and tragic; or regressive; according to the capacity to hold on to core values, and maintain a sense of self and of belonging in the world. Areas of greatest unmet need focused around psychological, social and existential dimensions while provision of care mainly focused on physical need. Conclusion The current palliative care model may not be appropriate to meet the needs of frail older people. Considering the core values and sense of self that are involved in adjusting to and coping with losses experienced at this stage may help to highlight where best to alleviate psychological, social and existential distress as frail older people reach the end of life.

Background Recent controversy around the Liverpool Care Pathway has highlighted the need to listen to patient and carer perspectives. Better understanding of how different patient groups perceive their deteriorating health and approaching death can inform palliative care developments for all conditions. Aim To establish whether there are typical narratives of living with and dying from a variety of progressive conditions, that might provide insights into how best to provide effective, patient-centred care. Methods We used a narrative framework to synthesise eight methodologically comparable, longitudinal, interview studies undertaken by our research group. We examined the narratives of people dying from cancer (lung, glioma and colorectal cancer), organ failure (heart, liver and chronic obstructive pulmonary disease) and physical frailty, in socioeconomically and racially diverse populations in Scotland. Results The dataset comprised 828 in-depth interviews with 156 patients, 114 family caregivers and 170 health professionals. The cancer narratives typically had a clear beginning, middle and anticipated end. They gave a well-rehearsed account of the illness, with the dual themes of hope for recovery alongside fear of dying. In contrast, people with organ failure struggled to pinpoint when their illness began, or see meaningful patterns between acute events. Fewer spoke about death, hoping instead to avoid further deterioration. Some attributed their poor health to ‘old age’, others struggled to identify any specific illness. Frail older people were frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying. Conclusions The typical cancer narrative is very different from those in frailty or organ failure. Palliative care as a concept may be too inextricably linked to imminent death to be acceptable and appropriate for these patients. We must diversify palliative care provision to meet the range of holistic needs of all patients approaching the end of life.

A better understanding of the needs of patients and their carers can help improve services. Marilyn Kendall and colleagues describe how to conduct multiperspective studies.