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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.

This scoping review aims to map the social dimensions of kidney care pathways. End-stage kidney disease places significant demands on patients, caregivers, healthcare professionals, and the broader healthcare system. Kidney replacement therapy and conservative kidney management are the common management pathways for end stage kidney disease, but its delivery entails substantial time, financial, and social costs. Research has documented some social aspects of kidney care pathways, but findings are fragmented across disciplines and have not been synthesised coherently. A scoping review is therefore needed to map the existing evidence, identify key domains of social impact, and highlight gaps to inform future research and policy. Eligible studies will include primary research that reports on the social dimensions of managing end-stage kidney disease (ESKD) in adults. Studies from all settings, involving relevant stakeholder groups including patients with end stage kidney disease, informal caregivers, healthcare staff, and Industrial and supply chain workers engaged in different roles associated with kidney replacement therapy and/or conservative kidney management, will be included. The review will follow JBI methodology. Peer-reviewed and grey literature will be identified through searches of electronic databases (MEDLINE, CINAHL, PsycInfo, SocINDEX, EconLit, Web of Science) and grey literature sources (including Google Scholar and organisational reports). Reference lists of relevant reviews and identified articles will also be screened to identify any other relevant articles. Two reviewers will independently screen records and extract data using a predefined form. Results will be synthesised narratively and presented in thematic and tabular formats. This scoping review aims to generate evidence on the social impact of kidney replacement therapy and conservative management across multiple stakeholder groups. The review will provide a structured overview of how social outcomes are conceptualised, measured, and reported across the kidney care continuum. Open Science Framework osf.io/63wpk.

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.

Background Effective communication is critically important for providing child- and family-centred care. This approach puts children and their parents at the centre of the nursing care and decision-making processes. However, there are limited studies from a cultural perspective from low- and middle-income countries like Türkiye on how nurses approach end-of-life conversations with children. This study aims to explore nurses’ experiences of end-of-life communication with children who have life-threatening conditions in paediatric intensive care units. Methods A qualitative descriptive study with data generated by semi-structured interviews were conducted using thematic analysis. The purposive sampling technique was used to gather data from 16 nurses caring for children with life-threatening conditions in paediatric intensive care units between July and October 2024. Ethical approval was obtained from University of Mugla Sitki Kocman Research Ethics Committee [Ref: 230007]. Results The data analysis developed four themes and 12 subthemes. The main themes were: (1) Avoiding talking about death, (2) Challenging situations unique to the paediatric intensive care unit,3) End-of-life communication facilitators, and 4) How best to support nurses in improving their end-of-life communication skills. Nurses experienced difficulties in how to answer children’s questions during end-of-life care, and sometimes they told partial truths or changing the subject. The study also revealed end-of-life communication facilitators such as compassion, knowing children’s interests and age-appropriate communication. Challenging experiences were identified as talking about death, child-witnessed resuscitation, struggling between compassion and hospital visiting policies and, non-adherence to treatment in children. In addition, participants reported the need for end-of-life communication skills training and support from psychiatric consultation liaison nurses to overcome challenging situations. Conclusions Nurses in paediatric intensive care units have significant difficulties in communicating effectively with children who have life-threatening conditions and need support to enhance their end-of-life communication skills with children. To contribute higher quality child and family centred care and facilitate end-of-life communication with children who have life-threatening conditions, the development of culturally sensitive end-of-life communication guidelines/tools/policies for paediatric intensive care units need to be prioritised and effective support measures should be implemented for these nurses.

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.

Background Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death. Methods We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors. Results One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40–9.90) and living with someone (OR 2.19, 1.33–3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14–5.03). Conversely, functional independence (OR 1.05, 1.04–1.06) and valuing quality of life (OR 3.11, 2.89–3.36) were associated with dying at home. There was a mismatch between preferences and achievements – of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference. Conclusion Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply ‘achieved preferences’.

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.

ObjectivesTo explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision.DesignA rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results.Data sourcesSix databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus.Eligibility criteriaPrimary research articles reporting qualitative or quantitative findings about palliative and end of life care in prisons, published in peer-reviewed, English language journals between January 2014 to December 2018.ParticipantsPrisoners, prisoners’ families, prison healthcare staff and other prison staff.Data extraction/synthesisData extracted included: citation, design, aim, setting, sample/population, methods and key findings. Data were analysed thematically then subject to a narrative synthesis in order to answer the research questions.Quality appraisalTwo researchers independently appraised articles using the Qualsyst tool, by Kmet et al (2004). Aggregate summary quality scores are included with findings. Articles were not excluded based on quality appraisal.Results23 articles were included (16 qualitative, 6 quantitative, 1 mixed methods). Top three findings (by prevalence) were: fostering relationships with people both inside and outside of prison is important to prisoners with palliative and end of life care needs, inmate hospice volunteers are able to build and maintain close relationships with the prisoners they care for and the conflicting priorities of care and custody can have a negative impact on the delivery of palliative and end of life care in prisons.ConclusionsThe key findings are: relationships are important to prisoners at the end of life, inmate hospice volunteers can build close bonds with the prisoners in their care and the prison environment and regime conflicts with best practices in palliative and end of life care. Directions for future research are also identified.PROSPERO registration numberPROSPERO ID: CRD42019118737. Registered January 2019.

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.

ObjectiveTo describe how care home staff experience bereavement and their perspectives on providing bereavement care within care home settings.DesignQualitative descriptive study using focus groups analysed with the Framework Method.SettingSeven residential and nursing care homes for older adults in Scotland.Participants37 care home staff were recruited through the Enabling Research In Care Homes (ENRICH) Scotland research network. Participants included registered nurses, care workers, senior care workers, managers and ancillary workers with experience of resident death and bereavement practice.ResultsBereavement was woven through everyday care home life, understood as a tapestry of experiences, relationships and practices that involved staff, residents and their relatives. Three themes that connected to the tapestry metaphor were identified: Warps: structural threads grounding bereavement within the culture of homely living, where close bonds normalise death and dying, and pragmatic acceptance. Wefts: strengthening practices nurturing resilience, including relational trust, mutual support, rituals and follow-up with relatives. Moths: disruptions undermining bereavement practice include family secrecy, hospital deaths with withheld information, difficulty supporting residents with advanced dementia and dissatisfaction with online training.ConclusionsBereavement in care homes is collective, relational and embedded in routine practice. Organisational recognition of grief improved interservice communication. Tailored reflective support for staff is needed to sustain compassionate care. Further research should explore how residents experience repeated exposure to death and bereavement within communal living environments.