Primary data on symptom burden and quality of life among elderly patients at risk of dying during unplanned admissions to an NHS hospital: a cohort study using EuroQoL and the integrated palliative care outcome scale.

BACKGROUND: Older people account heavily for palliative care needs at the population level and are growing in number as the population ages. There is relatively little high-quality data on symptom burden and quality of life, since these data are not routinely collected, and this group are under-recruited in primary research. It is unclear which measurement tools are best suited to capture burdens and experience. METHODS: We recruited a cohort of 221 patients aged 75 + years with poor prognosis who had an unplanned admission via the emergency department in a large urban hospital in England between 2019 and 2020. Risk of dying was assessed using the CriSTAL tool. We collected primary data and combined these with routine health records. Baseline clinical data and patient reported quality of life outcomes were collected on admission and reassessed within the first 72 h of presentation using two established tools: EQ-5D-5 L, EQ-VAS and the Integrated Palliative Outcomes Scale (IPOS). RESULTS: Completion rate was 68% (n = 151) and 33.1% were known to have died during admission or within 6 months post-discharge. The vast majority (84.8%) reported severe difficulties with at least one dimension of EQ-5D-5 L at baseline and improvements in EQ-VAS observed at reassessment in 51.7%. The baseline IPOS revealed 78.2% of patients rating seven or more items as moderate, severe or overwhelming, but a significant reduction (-3.6, p < 0.001) in overall physical symptom severity and prevalence was also apparent. No significant differences were noted in emotional symptoms or changes in communication/practical issues. IPOS total score at follow up was positively associated with age, having comorbidities (Charlson index score > = 1) and negatively associated with baseline IPOS and CriSTAL scores. CONCLUSION: Older people with poor prognosis admitted to hospital have very high symptom burden compared to population norms, though some improvement following assessment was observed on all measures. These data provide valuable descriptive information on quality of life among a priority population in practice and policy and can be used in future research to identify suitable interventions and model their effects.

Grasping a new approach to older persons' dignity: A process evaluation of the Swedish Dignity Care Intervention in municipal palliative care.

AIM: Dignity in older persons is a goal of palliative care. This study aimed to perform a process evaluation of the Swedish Dignity Care Intervention (DCI-SWE) in municipal palliative care in Sweden, focusing on implementation, context, and mechanism of impact. METHODS: This study had a process evaluation design. The Knowledge to Action framework supported the implementation of the DCI-SWE. The intervention was used by community nurses with older persons (n = 18) in home healthcare and nursing homes. Data were collected by focus groups- and individual interviews with community nurses (n = 11), health care professionals (n = 5) and managers (n = 5), reflective diaries, and field notes. RESULTS: Grasping the DCI-SWE was challenging for some community nurses. Enhanced communication training and increased engagement from managers were requested. However, the DCI-SWE was perceived to enhance professional pride in nursing. In terms of fidelity, dose and reach the project was not fully achieved. Regarding mechanism of impact the DCI-SWE contributes to address older persons' loneliness and existential life issues, as it put conversations with older persons on community nurses' agenda. CONCLUSIONS: The DCI-SWE provided opportunities to maintain older persons' dignity and quality of life. However, with refinements of design and the DCI-SWE, the sustainability in the context may increase.

Memory making in critical care: A qualitative thematic synthesis.

BACKGROUND: Caring for bereaved families is an important aspect of the nursing role in critical care. Memory making practices are one way in which dying, death and bereavement can be acknowledged and supported within critical care. Memory making was introduced into the care of stillborn babies and neonatal deaths to improve parents' experiences of bereavement, and has since become common practice in adult critical care. AIMS: The aim of this qualitative thematic synthesis was to explore families' experiences of memory making in critical care, with a view of gaining greater understanding of the ways in which memory making impacts bereaved families. METHODS: A systematic search strategy was developed, and five databases were searched (Medline, CINAHL, PsychINFO, Embase and ASSIA). Seven qualitative studies were included: four were conducted in adult and three in paediatric critical care settings in which memory making was initiated between 2014 and 2020. Memory making practices included, patient diaries, general keepsakes, word clouds and photography. RESULTS: The thematic synthesis generated four main themes to describe families' experience of memory making in critical care: 'connection', 'compassion', 'engagement and creation' and 'continuation'. CONCLUSIONS: Memory making is a meaningful activity for families whose loved one dies in critical care; it brings focus and meaning during a devastating process in a highly technical environment. Families rely heavily on nursing staff for support and guidance. The creation of memories and/or keepsakes can have a positive impact on the bereavement experience for families and can facilitate a continuing bond with their loved one. RELEVANCE TO CLINICAL PRACTICE: Memory making is a worthwhile practice to support and guide family bereavement within critical care. It can provide structure and purpose during an emotionally challenging transition, by supporting families to focus on a meaningful activity during a devasting time.

Communication strategies and persuasion as core components of shared decision-making for children with life-limiting conditions: A multiple case study.

BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. AIM: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. DESIGN: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. SETTING/PARTICIPANTS: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. FINDINGS: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child's best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child's psychosocial wellbeing. CONCLUSIONS: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals' moral reasoning may assist the process of shared decision-making.

Communicating with young children who have a parent dying of a life-limiting illness: a qualitative systematic review of the experiences and impact on healthcare, social and spiritual care professionals.

BACKGROUND: Healthcare professionals play a key role in interacting with children who have a parent with a life-limiting illness. While playing such a role can be challenging, not much is known about how such interactions impact these professionals and affect their ability to render support. METHODS: Four databases were searched with the intention to conduct a qualitative systematic review. Articles were selected based on pre-determined inclusion and exclusion criteria. Their quality was assessed using the tool "Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields". Findings were analysed using thematic analysis techniques outlined by Thomas and Harden as well as Sandelowski and Barroso. Review was registered with the Review Registry database. RESULTS: Three themes emerged - healthcare professionals' discomfort; their assumptions and actions; and potentiating workplace factors. The discomfort had several dimensions: fear of making a situation worse, concern of not being able to cope with emotionally charged situations, and internal conflict that arose when their values clashed with family dynamics. CONCLUSION: Healthcare professionals' sense of discomfort was very pronounced. This discomfort, together with their assumptions, could impact their ability to support children. The organisation played an important role, which was reflected in the work culture, workflow and ability to collaborate with other agencies involved in supporting children. The discomfort was mitigated by having more professional experience, workplace support systems and training on communicating with children. It was apparent that the individual professional did not work alone when supporting children but alongside others within an organisation. As such, issues raised in this review will benefit from multi-faceted solutions.

An analysis of the diagnostic accuracy and peer-to-peer health information provided on online health forums for heart failure.

AIMS: To examine the accuracy of diagnostic responses and types of information provided on online health forums. DESIGN: Qualitative descriptive study. METHODS: This paper reports the findings of a thematic analysis of peer responses to posts included on heart failure online health forums, to understand the quality and types of information provided. Responses posted between March 2016 and March 2019 were screened, collected and analysed thematically using Braun & Clarke. Themes were conceptually underpinned by Normalization Process Theory. Responses were assessed for quality against the NICE and SIGN guidelines to determine whether they were evidence based or not. RESULTS: The total number of responses collected for analysis was 639. Five main themes were identified: diagnostic, experiential, informational, peer relations and relationships with healthcare professionals. Out of 298 diagnostic responses, 5% were guideline evidence-based and 6% had information that were partly evidence-based. Non-evidence based and potentially dangerous responses were 10%. Experiential responses were 10%; 23% included advice that was not supported with any clinical evidence; and 46% signposted users to other online references/healthcare professionals. CONCLUSION: Online health communication largely focuses on provision of experiential responses to assist those in need of pre- or post-diagnosis advice and support. However, there is evidence of inaccurate information provision which suggests the use of a moderator would be beneficial. IMPACT: This study suggests heart failure online health forums are a source of support, however, there are potential risks. Increasing nurses and other health care professional's awareness of online health forums will be important. Additional training is needed to help them learn more about patient's use of online health forums, to gain a better understanding about the types of information sought, and how best to address such knowledge deficits. Healthcare systems must ensure sufficient time and resources are available to meet information needs for people with heart failure.

A mixed-methods systematic review of nurse-led interventions for people with multimorbidity.

AIMS: To identify types of nurse-led interventions for multimorbidity and which outcomes are positively affected by them. DESIGN: Mixed-methods systematic review following the Joanna Briggs Institute (JBI) methods for convergent-integrated reviews. PROSPERO ID: CRD42020197956. DATA SOURCES: Cochrane CENTRAL, CINAHL, Embase and MEDLINE were searched in October 2020. Grey literature sources included OpenGrey, the Journal of Multimorbidity and Comorbidity and reference mining. REVIEW METHODS: English-language reports of nurse-led interventions for people with multimorbidity were included based on author consensus. Two reviewers performed independent quality appraisal using JBI tools. Data were extracted and synthesized using a pre-existing taxonomy of interventions and core outcome set. RESULTS: Twenty studies were included, with a median summary quality score of 77.5%. Interventions were mostly case-management or transitional care interventions, with nurses in advanced practice, support to self-manage conditions, and an emphasis on continuity of care featuring frequently. Patient-centred outcomes such as quality of healthcare and health-related quality of life were mostly improved, with mixed effects on healthcare utilization, costs, mortality and other outcomes. CONCLUSION: Interventions such as case management are agreeable to patients and transitional care interventions may have a small positive impact on healthcare utilization. Interventions include long-term patient management or short-term interventions targeted at high-risk junctures. These interventions feature nurses in advanced practice developing care plans in partnership with patients, to simplify and improve the quality of care both in the long and short-term. IMPACT: This is the first mixed-methods review which includes all types of nurse-led interventions for multimorbidity and does not focus on specific comorbidities or elderly/frail populations. Using adapted consensus-developed frameworks for interventions and outcomes, we have identified the common features of interventions and their overall typology. We suggest these interventions are of value to patients and healthcare systems but require localization and granular evaluation of their components to maximize potential benefits.

Mixed methods systematic review: Factors influencing research activity among nurses in clinical practice.

AIM: This study aimed to identify, evaluate and summarise current evidence in relation to the factors that influence the conducting of research by nurses in clinical practice. DESIGN: This study used mixed methods systematic review. DATA SOURCES: CINAHL, EMBASE, MEDLINE, Scopus and ASSIA, with dates limited from 2015 to 2020, were used to conduct a systematic search of the literature. REVIEW METHODS: The Joanna Briggs Institute approach was followed, with results reported according to the Preferred Reporting System for Systematic Reviews and Meta-Analyses. The associated checklist for systematic reviews was also used. A standardised data extraction tool was then used, with quality appraisal guided by the Mixed Methods Appraisal Tool, with a subsequent convergent qualitative synthesis. RESULTS: Sixteen papers were identified for inclusion, nine quantitative, six qualitative and one mixed methods. Four themes were identified: research competence and culture, proactive research mentorship, research resources and making a difference. These were critically discussed in relation to barriers and enablers to the conduct of research by nurses in clinical practice. Commonly cited barriers included a lack of research knowledge, confidence and access to resources, particularly protected time, while enablers such as educational partnerships, identifying research-motivated clinical nurses and access to research role models were also apparent in the literature. CONCLUSIONS: Globally, nurses in clinical practice are clearly motivated to engage in the research process despite apparent barriers that have a significant impact on productivity. Nevertheless, there are also enablers to building research capacity apparent that offer methodological and structural approaches to empower this group to conduct research.

Florence Nightingale's legacy for clinical academics: A framework analysis of a clinical professorial network and a model for clinical academia.

BACKGROUND: Clinical academic nursing roles are rare, and clinical academic leadership positions even more scarce. Amongst the United Kingdom (UK) academia, only 3% of nurses who are employed within universities are clinically active. Furthermore, access to research fellowships and research grant funding for nurses in clinical or academic practice is also limited. The work of Florence Nightingale, the original role model for clinical academic nursing, is discussed in terms of how this has shaped and influenced that of clinical academic nurse leaders in modern UK healthcare settings. We analysed case studies with a view to providing exemplars and informing a new model by which to visualise a trajectory of clinical academic careers. METHODS: A Framework analysis of seven exemplar cases was conducted for a network of Clinical Academic Nursing Professors (n = 7), using a structured template. Independent analysis highlighted shared features of the roles: (a) model of clinical academic practice, (b) infrastructure for the post, (c) capacity-building initiatives, (d) strategic influence, (e) wider influence, (f) local and national implementation initiatives, (g) research area and focus and (h) impact and contribution. FINDINGS: All seven of the professors of nursing involved in this discourse were based in both universities and healthcare organisations in an equal split. All had national and international profiles in their specialist clinical areas and were implementing innovation in their clinical and teaching settings through boundary spanning. We outline a model for career trajectories in clinical academia, and how leadership is crucial. CONCLUSION: The model outlined emphasises the different stages of clinical academic roles in nursing. Nursing as a discipline needs to embrace the value of these roles, which have great potential to raise the standards of healthcare and the status of the profession.

A Portuguese trial using dignity therapy for adults who have a life-threatening disease: Qualitative analysis of generativity documents.

OBJECTIVES: Dignity therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a final generativity document. DT addresses psychosocial and existential issues, enhancing a sense of meaning and purpose. Several studies have considered the legacy topics most frequently discussed by patients near the end of life. To date, no Portuguese study has done that analysis. METHOD: We conducted a qualitative analysis of 17 generativity documents derived from a randomized controlled trial (RCT). Inductive content analysis was used to identify emerging themes. RESULTS: From the 39 RCT participants receiving DT, 17 gave consent for their generativity document to undergo qualitative analysis. Nine patients were female; mean age of 65 years, with a range from 46 to 79 years. Seven themes emerged: "Significant people and things"; "Remarkable moments"; "Acknowledgments"; "Reflection on the course of life"; "Personal values"; "Messages left to others"; and "Requests and last wishes". SIGNIFICANCE OF RESULTS: Generativity document analysis provides useful information for patients nearing death, including their remarkable life moments and memories, core values, concerns, and wishes for their loved ones. Being conscious of these dominant themes may allow health providers to support humanized and personalized care to vulnerable patients and their families, enhancing how professionals perceive and respond to personhood within the clinical setting.

Caring, sharing, preparing and declaring: how do hospices support prisons to provide palliative and end of life care? A qualitative descriptive study using telephone interviews.

BACKGROUND: Older adults in prison have complex healthcare needs, and many will need palliative care before their sentence ends. Compared with prison-based hospices, little is known about the role played by community-based hospices in providing palliative care to people in prison. AIM: To describe the roles Scottish hospices have adopted to support prisons to provide palliative care, and to discuss the international relevance of these findings in addressing the knowledge gap around community hospices supporting people in prison. DESIGN: A qualitative descriptive study using semi-structured telephone interviews. SETTING/PARTICIPANTS: Representatives from all Scottish adult hospices were invited to take part in a short telephone interview and all (N = 17) participated. RESULTS: Four roles were identified: caring, sharing, preparing and declaring. Most hospices employed different combinations of roles. Five (30%) hospices were engaged in caring (providing direct care at the prison or the hospice). Eleven (65%) hospices were engaged in sharing (supporting the prison by sharing knowledge and expertise). Eleven (65%) hospices were engaged in preparing (making preparations to support prisons). All seventeen hospices were described as declaring (expressing a willingness to engage with prisons to provide care). CONCLUSIONS: There are differences and similarities in the way countries provide palliative care to people in prison: many are similar to Scotland in that they do not operate prison-based hospices. Variations exist in the level of support hospices provide. Ensuring that all people in prison have equitable access to palliative care will require close collaboration between prisons and hospices on a national level.

Implementing technology to support the deteriorating patient in acute care: evaluating staff views.

BACKGROUND: Early warning scores (EWS) have been widely used to aid in the detection of deterioration. The use of technology, alongside EWS, may improve patient safety and lead to improvements in the accuracy of documentation. AIM: The aim of this service evaluation was to understand nurses' and healthcare support worker views around the implementation of handheld electronic devices for documenting care related to the deteriorating patient. METHODS: Before the implementation of an electronic handheld device, in-depth semi-structured interviews with nursing staff and healthcare support workers were undertaken to explore the context for improvement. The Consolidated Framework for Implementation Research was used to analyse, organise and present data, to ensure systematic inquiry across the range of potential facilitators and challenges perceived by staff. In all, 11 interviews were undertaken across three speciality areas (four wards). FINDINGS: Challenges to the use of new technology included staff apprehension around training and education needs and the uncertainty of technological reliability in the clinical setting. Potential facilitators to support the implementation of this technology were: the potential for improved communication across the individual ward and hospital setting and the potential for more streamlined processes for escalation of concerns. CONCLUSION: Three main recommendations for practice emerged. First, nurses should be involved in the development of the systems. Appropriate time is required to embed the technology in practice. Finally, thought must be given not just to the absolute number of devices required and their reliability, but also how new technology interacts in each individual context.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

BACKGROUND: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. METHODS: Mortality follow-back postal survey. SETTING: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). PARTICIPANTS: Informal carers (ICrs) of decedents who had received palliative care. DATA: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). ANALYSIS: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. RESULTS: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. CONCLUSIONS: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

COVID-19 and Hospital Palliative Care - A service evaluation exploring the symptoms and outcomes of 186 patients and the impact of the pandemic on specialist Hospital Palliative Care.

BACKGROUND: Patients hospitalised with COVID-19 have increased morbidity and mortality, which requires extensive involvement of specialist Hospital Palliative Care Teams. Evaluating the response to the surge in demand for effective symptom management can enhance provision of Palliative Care in this patient population. AIM: To characterise the symptom profile, symptom management requirements and outcomes of hospitalised COVID-19 positive patients referred for Palliative Care, and to contextualise Palliative Care demands from COVID-19 against a 'typical' caseload from 2019. DESIGN: Service evaluation based on a retrospective cohort review of patient records. SETTING/PARTICIPANTS: One large health board in Scotland. Demographic data, patient symptoms, drugs/doses for symptom control, and patient outcomes were captured for all COVID-19 positive patients referred to Hospital Palliative Care Teams between 30th March and 26th April 2020. RESULTS: Our COVID-19 cohort included 186 patients (46% of all referrals). Dyspnoea and agitation were the most prevalent symptoms (median 2 symptoms per patient). 75% of patients were prescribed continuous subcutaneous infusion for symptom control, which was effective in 78.6% of patients. Compared to a 'typical' caseload, the COVID-19 cohort were on caseload for less time (median 2 vs 5 days; p < 0.001) and had a higher death rate (80.6% vs 30.3%; p < 0.001). The COVID-19 cohort replaced 'typical' caseload; overall numbers of referrals were not increased. CONCLUSIONS: Hospitalised COVID-19 positive patients referred for Palliative Care may have a short prognosis, differ from 'typical' caseload, and predominantly suffer from dyspnoea and agitation. Such symptoms can be effectively controlled with standard doses of opioids and benzodiazepines.

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

BACKGROUND: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. AIM: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. DESIGN: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs. SETTING: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). PARTICIPANTS: Informal carers of decedents who had received palliative care participated in the study. RESULTS: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%-16%, palliative care 1%-15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. CONCLUSION: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.

QALY-time: experts' view on the use of the quality-adjusted LIFE year in COST-effectiveness analysis in palliative care.

BACKGROUND: The Quality-Adjusted Life Year (QALY) is internationally recognized as standard metric of health outcomes in cost-effectiveness analyses (CEAs) in healthcare. The ongoing debate concerning the appropriateness of its use for decision-making in palliative care has been recently mapped in a review. The aim was to report on and draw conclusions from two expert meetings that reflected on earlier mapped issues in order to reach consensus, and to advise on the QALY's future use in palliative care. METHODS: A nominal group approach was used. In order to facilitate group decision making, three statements regarding the use of the QALY in palliative care were discussed in a structured way. Two groups of international policymakers, healthcare professionals and researchers participated. Data were analysed qualitatively using inductive coding. RESULTS: 1) Most experts agreed that the recommended measurement tool for the QALYs 'Q' component, the EuroQol-5D (EQ-5D), is inappropriate for palliative care. A more sensitive tool, which might be based on the capabilities approach, could be used or developed. 2) Valuation of time should be incorporated in the 'Q' part, leaving the linear clock time in the 'LY' component. 3) Most experts agreed that the QALY, in its current shape, is not suitable for palliative care. CONCLUSIONS: 1) Although the EQ-5D does not suffice, a generic tool is needed for the QALY. As long as no suitable alternative is available, other tools can be used besides or serve as basis for the EQ-5D because of issues in conceptual overlap. 2) Future research should further investigate the valuation of time issue, and how best to integrate it in the 'Q' component. 3) A generic outcome measure of effectiveness is essential to justly allocate healthcare resources. However, experts emphasized, the QALY is and should be one of multiple criteria for choices in the healthcare insurance package.

A mixed methods systematic review of the effects of patient online self-diagnosing in the 'smart-phone society' on the healthcare professional-patient relationship and medical authority.

BACKGROUND: As technology continues to advance, the internet is becoming increasingly popular. Self-diagnosis and health information seeking online is growing more common and it will be important to understand the influence this may have on the patient-healthcare professional relationship. METHODS: A mixed-method systematic review of quantitative, qualitative and mixed method studies concerning the public and healthcare professionals' perceptions of online self-diagnosis and health information seeking and how this can impact the patient-healthcare professional relationship. We searched MEDLINE, EMBASE, CINAHL, ACM & SCOPUS between 2007 and 2018. Relevant data were extracted, and a thematic analysis was conducted and conceptualised using the Normalisation Process Theory framework. RESULTS: Of 6107 records identified, 25 articles met the review eligibility criteria which included 16 qualitative, 8 quantitative and 1 mixed method study. The findings indicated that patients found the internet as a complementary information source alongside healthcare professionals. Health care professionals were perceived to be the most reliable and valued information source. People feel responsible for their own health and find the internet to be a source that provides information rapidly with accessibility at their convenience. Most healthcare professionals agreed on the importance of collaboration with patients and the need to develop a partnership and shared decision-making process but struggled to find time in the consultation to do so efficiently. Some healthcare professionals felt that the internet was advantageous for patients looking after their own health, while others felt it was due to a lack of trust in their expertise. Patients tended to present information to the healthcare professional to support the therapeutic relationship rather than to challenge it and to become more involved in the decision-making process of their healthcare. CONCLUSION: The results of this review suggests that patients value healthcare professionals as a source of medical advice more than the internet. While health professionals' views were mixed our findings indicate that online health information seeking can potentially improve the patient-healthcare professional relationship as patients reported they usually conducted an online search to form a partnership with the healthcare professional as opposed to trying to prove them wrong.

Variation in resource allocation in urgent and emergency Care Systems in Ireland.

BACKGROUND: A key challenge for most systems is how to provide effective access to urgent and emergency care across rural and urban populations. Tensions about the placement and scope of hospital emergency services are longstanding in Irish political life and there has been recent reform to centralise hospital services in some regions. The focus of this paper is a system approach to examine the geographic variation in resourcing and utilisation of such care across GP practices, out-of-hours care, ambulance services, Emergency Departments and Local Injury Units in Ireland. METHODS: We used a cross-sectional study design to evaluate variation in resource allocation by aggregating geographic funding to various elements of the urgent and emergency care system and assessing patterns in hospital resource utilisation across the population. Expenditure, staffing, access and activity data were gathered from government sources, individual facilities and service providers, health professional bodies, private firms and central statistics. Data on costs and activity in 2014 are collated and presented at both county and regional levels. Analyses focus on resources spent on urgent and emergency care across geographic areas, the role of population concentration in allocation, the relationship between pre-hospital spending and in-hospital spending, and the utilisation of hospital-based emergency care resources by residents of each county. RESULTS: An array of funding mechanisms exists, resulting in a fragmented approach to the resourcing of urgent and emergency care. There are large differences in spending per capita at the county-level, ranging from between €50 and €200 per capita; however, these are less pronounced regionally. Distribution of hospital emergency care resources is highly skewed to the North East of the country, and away from the recently reconfigured South and Mid-West regions. CONCLUSIONS: This analysis advances the traditional approach of evaluating individual services or hospital resourcing. There are notable differences in utilisation of hospital-based emergency care resources at the regional level, indicating that populations within those regions which have been reconfigured have lower utilisation of hospital resources. There is a clear case for more integration in decision-making around funding and consideration of key principles, such as equity, to guide that process.

Multiple and multidimensional life transitions in the context of life-limiting health conditions: longitudinal study focussing on perspectives of young adults, families and professionals.

BACKGROUND: There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not listening to the voice of YAs, collecting data retrospectively, at one time point, from one group's perspective and single case studies. The aim of this study was to address the gaps found in our literature review and provide a clearer understanding of the multiple and multi-dimensional life transitions experienced by YAs and significant others, over a period of time. METHODS: This qualitative study used a longitudinal design and data were collected using semi-structured interviews over a 6-month period at 3 time points. Participants included 12 YAs with life-limiting conditions and their nominated significant others (10 family members and 11 professionals). Data were analysed using a thematic analysis approach. RESULTS: Life transitions of YA and significant others are complex; they experience multiple and multi-dimensional transitions across several domains. The findings challenge the notion that all life transitions are triggered by health transitions of YAs, and has highlighted environmental factors (attitudinal and systemic) that can be changed to facilitate smoother transitions in various aspects of their lives. CONCLUSIONS: This study makes a unique and significant contribution to literature. It provides evidence and rich narratives for policy makers and service providers to change policies and practices that are in line with the needs of YAs with life-limiting conditions as they transition to adulthood. Families and professionals have specific training needs that have not yet been met fully.

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.