A comparison of four dementia palliative care services using the RE-AIM framework.

BACKGROUND: Living with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned. METHODS: A long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services. RESULTS: The four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place. CONCLUSIONS: An effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.

Identification of eating, drinking and swallowing difficulties for people living with early-stage dementia: A systematic review.

BACKGROUND: The prevalence of dementia is increasing, bringing a range of challenges, such as eating, drinking and swallowing (EDS) difficulties, that are associated with aspiration, which can be fatal. Early identification of EDS difficulty in early-stage dementia could prevent complications, but reliable indicators are needed to help develop pathways to support the diagnosis. Previous reviews of this area require updating. AIMS: To identify reliable and clinically measurable indicators of EDS difficulty used in early-stage dementia. METHODS & PROCEDURES: A systematic search was conducted using common databases (MEDLINE, EMBASE and PsychInfo). Articles reporting indicators of EDS difficulty in early-stage dementia or mild cognitive impairment were included. The reliability of included studies was critically appraised using the risk of bias tools. Study outcomes were narratively reviewed by considering the reliability, clinical measurability and applicability of EDS indicators to early-stage dementia. OUTCOMES & RESULTS: Initial searches returned 2443 articles. After removing duplicates, limiting to English language and human studies, 1589 articles remained. After reviewing titles, 60 abstracts were reviewed, yielding 18 full-text articles. A total of 12 articles were excluded that did not report at least one indicator of EDS difficulty in early-stage dementia, or where the reported association was not strong. Six included studies that reported eight indicators of EDS difficulty in early-stage dementia (four studies including people with Alzheimer's disease). On the balance of measurability, reliability and applicability, the most promising indicators of EDS difficulty were: delayed oral transit, rinsing ability, sarcopenia and polypharmacy. Additional, less reliable and applicable indicators included: always opened lips and non-amnestic mild cognitive impairment, especially in men. The delayed pharyngeal response is subjectively measured when instrumental assessment is not available and the 'candy sucking test' cannot be recommended because there is an inherent choking risk. CONCLUSIONS & IMPLICATIONS: EDS difficulty in early-stage dementia can be highlighted by indicators that could be combined to create enhanced pathways to support the early identification of EDS difficulties for people living with early-stage dementia with a view to preventing complications and facilitating informed discussions regarding wishes in the event of further deterioration. Exploring the experiences of people living with dementia and their families' perspectives on potential indicators of EDS difficulty may add to the existing evidence base. WHAT THIS PAPER ADDS: What is already known on the subject Early identification of EDS difficulty in early-stage dementia may prevent complications, but more reliable and clinically measurable indicators of EDS difficulty are needed to help develop pathways to support diagnosis. What this paper adds to existing knowledge A comprehensive range of studies related to EDS identification in early-stage dementia have been selected and reviewed. Across six included studies, the most promising indicators of EDS difficulty in early-stage dementia included delayed oral transit, poor rinsing ability, presence of sarcopenia and polypharmacy. What are the potential or actual clinical implications of this work? This study could help to develop pathways to support the early identification of EDS difficulties for people living with early-stage dementia with a view to preventing complications and facilitating informed discussions regarding wishes in the event of further deterioration.

Effectiveness of Telephone-Based Interpersonal Psychotherapy on Antenatal Depressive Symptoms: A Prospective Randomized Controlled Trial in The Kingdom of Jordan.

BACKGROUND: Jordanian pregnant women report high prevalence of antenatal depressive symptoms, compared to their counterparts internationally. One potential nonpharmacological intervention is Interpersonal Psychotherapy (IPT), accessed by telephone. AIM: The aim of this study is to compare the depressive symptom level(s) among Jordanian pregnant women who received IPT treatment with those who received routine antenatal care. METHODS: A prospective randomized controlled trial design was used. Following ethical approval, a sample of 100 pregnant women (50 in each group) at 24 to 37 weeks gestation, was drawn from one governmental public hospital. Seven sessions (each half an hour) of telephone-based IPT were offered twice weekly to those assigned to the intervention arm: one pretherapy orientation, five intermediates, and one closing session. The Edinburgh Postnatal Depression Scale was administered before and after the intervention. Analysis of covariance was used to detect the intervention effect. The two groups were matched based on demographic and health characteristics. RESULTS: Compared to the control group, pregnant women who received the intervention reported fewer depressive symptoms. CONCLUSIONS: Midwives and general nurses should screen all pregnant women for symptoms of depression. The effectiveness of IPT treatment in alleviating depressive symptoms indicates the importance of using such supportive interventions by midwives and general nurses, who are trained in psycho-educational counseling techniques. Moreover, data provided by this study may encourage policymakers to legislate policies that make psychotherapists available and accessible in antenatal care units and ensure that staff have adequate training via continuing education programs to screen for antenatal depressive symptoms.

Exploring the connection between dementia and eating, drinking and swallowing difficulty: Findings from home-based semi-structured interviews.

BACKGROUND: Eating, drinking and swallowing (EDS) difficulties are important to identify early. Awareness of EDS changes starts with those living with dementia or their family carers. However, little is known about early identification from the perspective of people with dementia. AIM: The aim of this study was to understand the experience of EDS by people living with dementia in their own home. METHODS: Published evidence pertaining to EDS difficulties in dementia was used to inform an online semi-structured interview guide. Four people living with dementia and a third-sector Empowerment Lead were invited to become co-researchers. People living with dementia and their carers were invited to be interviewed. We enquired about their past and present experiences, and future expected changes in EDS, information needs, opinions on early problem identification, and lifestyle modifications following onset of EDS difficulty. Narrative concepts of heroes and villains in their 'stories' were identified. Responses were subjected to framework analysis informed by narrative enquiry. RESULTS: Seven people living with dementia and five family carers were interviewed. The overarching theme was a 'missed connection' between EDS difficulty and dementia. Where EDS difficulties were identified, 'compensatory changes' and a need for 'access to information' were noted. CONCLUSIONS: The connection between potential EDS difficulties and a dementia diagnosis may not be made, even though EDS changes were recognised by people living with dementia and their family carers. This may be explained by behaviours that mask problems or allow individuals to cope or compensate. Reduced awareness may also be due to inadequate access to information and lack of specialist services. If the connection between dementia and EDS difficulty is missed it could further delay access to support services. WHAT THIS PAPER ADDS: What is already known on the subject The prevalence of dementia is increasing and is expected to affect 9% of the population by 2040. EDS difficulties are common in people living with dementia and predispose to poorer outcomes. Better awareness of EDS changes early in the disease process of dementia or at preclinical stages can identify individuals at risk and allow for intervention prior to advanced EDS difficulties developing. What this paper adds to existing knowledge This paper reports the perspective of people living with dementia and family carers and provides insights into experiences of EDS and the challenges faced and identifies commonalities. The connection between potential EDS difficulties and dementia is missed despite various changes reported by both people living with dementia and their family carers, who tend to make compensatory lifestyle changes without support. What are the potential or actual clinical implications of this work? Lack of awareness of the connection between potential EDS difficulties and dementia may arise due to inadequate access to information to support people living with dementia and their family carers. Access to such information is needed and the quality assurance of information from reputable sources is important to people living with dementia. There is a need for greater service user awareness of signs of EDS difficulty and how to access specialist services.

Explaining and addressing the limitations in usefulness of available estimated prevalence figures relating to burnout in family doctors: Evidence from a systematic scoping literature review.

Burnout in family doctors (FDs) affects their well-being, patient care, and healthcare organizations, and is considered common worldwide. However, its measurement has been so inconsistent that whether the widely divergent prevalence figures can be meaningfully interpreted has been questioned. Our aim was to go further than previous systematic reviews to explore the meaning contribution and usefulness of FD-burnout prevalence estimates. Worldwide literature was systematically reviewed using Levac's scoping framework, with 249 papers undergoing full-text review. Of 176 studies measuring burnout, 78% used the Maslach Burnout Inventory (MBI), which measures burnout as now defined by the World Health Organization. We, therefore, concentrated on the MBI. Its burnout measurement was markedly inconsistent, with prevalence estimates ranging from 2.8% to 85.7%. Researchers made prevalence claims relating to burnout severity and implied diagnoses based on participants' MBI scores, even though the MBI has not been validated as a clinical or diagnostic tool. Except when comparisons were possible between certain studies, prevalence figures provided limited meaning and added little to the understanding of burnout in FDs. Our review revealed a lack of research-supported meaningful information about the prevalence of FD burnout and that care is required to avoid drawing unsubstantiated conclusions from prevalence results. This paper's overall purpose is to propose how obtaining meaningful prevalence estimates can begin, which are recognized as key to developing improved prevention policies and interventions. Researchers must adopt a consistent means to measure burnout, use the MBI as its authors intended, and explore making progress through quantitative and qualitative collaboration.

Heart Rate Variability Biofeedback to Treat Anxiety in Young People With Autism Spectrum Disorder: Findings From a Home-Based Pilot Study.

BACKGROUND: People with autism spectrum disorder (ASD) frequently experience high levels of anxiety. Despite this, many clinical settings do not provide specialist ASD mental health services, and demand for professional support frequently outstrips supply. Across many sectors of health, investigators have explored digital health solutions to mitigate demand and extend the reach of professional practice beyond traditional clinical settings. OBJECTIVE: This critical appraisal and pilot feasibility study examines heart rate variability (HRV) biofeedback as an approach to help young people with ASD to manage anxiety symptoms outside of formal settings. The aim is to explore the use of portable biofeedback devices to manage anxiety, while also highlighting the risks and benefits of this approach with this population. METHODS: We assessed the feasibility of using home-based HRV biofeedback for self-management of anxiety in young people with ASD. We adopted coproduction, involving people with ASD, to facilitate development of the study design. Next, a separate pilot with 20 participants with ASD (n=16, 80% male participants and n=4, 20% female participants, aged 13-24 years; IQ>70) assessed adoption and acceptability of HRV biofeedback devices for home use over a 12-week period. Data were collected from both carers and participants through questionnaires and interviews; participants also provided single-lead electrocardiogram recordings as well as daily reports through smartphone on adoption and use of their device. RESULTS: Pre-post participant questionnaires indicated a significant reduction in anxiety in children (t6=2.55; P=.04; Cohen d=0.99) as well as adults (t7=3.95; P=.006; Cohen d=0.54). Participant age was significantly negatively correlated with all HRV variables at baseline, namely high-frequency heart rate variability (HF-HRV: P=.02), the root mean square of successive differences in normal heartbeat contractions (RMSSD: P=.02) and the variability of normal-to-normal interbeat intervals (SDNN: P=.04). At follow-up, only SDNN was significantly negatively correlated with age (P=.05). Levels of ASD symptoms were positively correlated with heart rate both before (P=.04) and after the intervention (P=.01). The majority (311/474, 65.6%) of reports from participants indicated that the devices helped when used. Difficulties with the use of some devices and problems with home testing of HRV were noted. These initial findings are discussed within the context of the strengths and challenges of remotely delivering a biofeedback intervention for people with ASD. CONCLUSIONS: HRV biofeedback devices have shown promise in this pilot study. There is now a need for larger evaluation of biofeedback to determine which delivery methods achieve the greatest effect for people with ASD. TRIAL REGISTRATION: ClinicalTrials.gov NCT04955093; https://clinicaltrials.gov/ct2/show/NCT04955093.

An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting.

BACKGROUND: For outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2. Love and affection, 3. Physical suffering, 4. Emotional suffering, 5. Dignity, 6. Being supported, 7. Preparation) developed for use in economic evaluation of end-of-life interventions, has face validity and is feasible to use. This study aimed to assess the construct validity and responsiveness of the ICECAP-SCM in hospice inpatient and outpatient settings. METHODS: A secondary analysis of data collated from two studies, one focusing on palliative care day services and the other on constipation management, undertaken in the same national hospice organisation across three UK hospices, was conducted. Other quality of life and wellbeing outcome measures used were the EQ-5D-5L, McGill Quality of Life Questionnaire - Expanded (MQOL-E), Patient Health Questionnaire-2 (PHQ-2) and Palliative Outcomes Scale Symptom list (POS-S). The construct validity of the ICECAP-SCM was assessed, following hypotheses generation, by calculating correlations between: (i) its domains and the domains of other outcome measures, (ii) its summary score and the other measures' domains, (iii) its summary score and the summary scores of the other measures. The responsiveness of the ICECAP-SCM was assessed using anchor-based methods to understand change over time. Statistical analysis consisted of Spearman and Pearson correlations for construct validity and paired t-tests for the responsiveness analysis. RESULTS: Sixty-eight participants were included in the baseline analysis. Five strong correlations were found with ICECAP-SCM attributes and items on the other measures: four with the Emotional suffering attribute (Anxiety/depression on EQ-5D-5L, Psychological and Burden on MQOL-E and Feeling down, depressed or hopeless on PHQ-2), and one with Physical suffering (Weakness or lack of energy on POS-S). ICECAP-SCM attributes and scores were most strongly associated with the MQOL-E measure (0.73 correlation coefficient between summary scores). The responsiveness analysis (n = 36) showed the ICECAP-SCM score was responsive to change when anchored to changes on the MQOL-E over time (p < 0.05). CONCLUSIONS: This study provides initial evidence of construct validity and responsiveness of the ICECAP-SCM in hospice settings and suggests its potential for use in end-of-life care research.

Palliative care for older people with dementia-we need a paradigm shift in our approach.

Older people with dementia have multiple palliative care needs, with pain, agitation, dyspnoea, aspiration and pressure ulcers being common and persistent in advanced dementia. Anticipating the person's possible symptoms requires knowledge of the whole person, including the type of dementia, which is problematic when the dementia type is often not documented. A palliative care approach to dementia should look at symptoms across the four pillars of palliative care, but in reality, we tend to over-focus on physical and psychological symptoms, while spiritual and emotional needs can be overlooked, especially around the time of diagnosis, where such needs may be significant. Advance care planning (ACP) is a central tenet of good dementia palliative care, as the person may lose their ability to communicate and make complex decisions over time. Despite this, care planning is often approached too late, and with the person's family rather than with the person; much of the literature on ACP in dementia is based on proxy decision-making for people in residential care. Thus, we need a paradigm shift in how we approach dementia, beginning with timely diagnosis that includes the dementia type, and with services able to assess and meet emotional and spiritual needs especially around the time of diagnosis, and with timely ACP as an integral part of our overall approach.

A scoping review of the evidence for community-based dementia palliative care services and their related service activities.

BACKGROUND: Palliative care is identified internationally as a priority for efficacious dementia care. Research into "effective models" of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community. METHODS: A scoping review was employed. The search strategy was devised to identify all peer-reviewed research papers relating to the above aim. This process was iterative, and the search strategy was refined as evidence emerged and was reviewed. All types of study designs and both quantitative and qualitative studies of non-pharmacological interventions were considered for inclusion. RESULTS: The search identified 2,754 unique citations, of which 18 papers were deemed eligible for inclusion. Although a palliative care approach is recommended from early in the disease process, most evidence involves end-of-life care or advanced dementia and pertains to residential care. The majority of the research reviewed focused on the effects of advance care planning, and end-of-life care; specialist palliative care input, and/or generalist palliative care provided by dementia services to enable people to remain at home and to reduce costs of care. Community staff training in palliative care appeared to improve engagement with Specialist Palliative Care teams. Integration of dementia and palliative care services was found to improve care received for people with dementia and their carers. CONCLUSIONS: While the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia. This is imperative to enable people with dementia to inform their own care, to stay living at home for as long as possible, and, where appropriate, to die at home.

Speech and Language Practitioners' Experiences of Commercially Available Voice-Assisted Technology: Web-Based Survey Study.

BACKGROUND: Speech and language therapy involves the identification, assessment, and treatment of children and adults who have difficulties with communication, eating, drinking, and swallowing. Globally, pressing needs outstrip the availability of qualified practitioners who, of necessity, focus on individuals with advanced needs. The potential of voice-assisted technology (VAT) to assist people with speech impairments is an emerging area of research but empirical work exploring its professional adoption is limited. OBJECTIVE: This study aims to explore the professional experiences of speech and language therapists (SaLTs) using VAT with their clients to identify the potential applications and barriers to VAT adoption and thereby inform future directions of research. METHODS: A 23-question survey was distributed to the SaLTs from the United Kingdom using a web-based platform, eliciting both checkbox and free-text responses, to questions on perceptions and any use experiences of VAT. Data were analyzed descriptively with content analysis of free text, providing context to their specific experiences of using VAT in practice, including barriers and opportunities for future use. RESULTS: A total of 230 UK-based professionals fully completed the survey; most were technologically competent and were aware of commercial VATs (such as Alexa and Google Assistant). However, only 49 (21.3%) SaLTs had used VAT with their clients and described 57 use cases. They reported using VAT with 10 different client groups, such as people with dysarthria and users of augmentative and alternative communication technologies. Of these, almost half (28/57, 49%) used the technology to assist their clients with day-to-day tasks, such as web browsing, setting up reminders, sending messages, and playing music. Many respondents (21/57, 37%) also reported using the technology to improve client speech, to facilitate speech practice at home, and to enhance articulation and volume. Most reported a positive impact of VAT use, stating improved independence (22/57, 39%), accessibility (6/57, 10%), and confidence (5/57, 8%). Some respondents reported increased client communication (5/57, 9%) and sociability (3/57, 5%). Reasons given for not using VAT in practice included lack of opportunity (131/181, 72.4%) and training (63/181, 34.8%). Most respondents (154/181, 85.1%) indicated that they would like to try VAT in the future, stating that it could have a positive impact on their clients' speech, independence, and confidence. CONCLUSIONS: VAT is used by some UK-based SaLTs to enable communication tasks at home with their clients. However, its wider adoption may be limited by a lack of professional opportunity. Looking forward, additional benefits are promised, as the data show a level of engagement, empowerment, and the possibility of achieving therapeutic outcomes in communication impairment. The disparate responses suggest that this area is ripe for the development of evidence-based clinical practice, starting with a clear definition, outcome measurement, and professional standardization.

Factors associated with antenatal depression in the Kingdom of Jordan during the COVID-19 pandemic.

Fear of infection and measures taken to mitigate infection, such as social distancing, lockdown and isolation can lead to anxiety and depression across the life course, but especially in pregnancy. We set out to identify the prevalence of depression in pregnancy, using Edinburgh Postnatal Depression Scale (EPDS) during national quarantine and to examine women's knowledge, attitude, and practices (KAP) in regard to potential COVID-19-related depression. Following ethical approval, an observational design, with an online questionnaire and snowball sampling was used to recruit 546 pregnant women (231 primi and 315 multiparous) in Jordan via common social media platforms (facebook, WhatsApp). Over one third (36.7%) reported depressive symptoms. There were significantly lower depression scores among pregnant women who exhibited more knowledge about COVID-19 (in high [vs low] knowledge groups, mean EPDS = 10.8 [vs 12.2]; p = 0.007). Depression scores were not significantly associated with attitude nor with practice. This suggests that enhanced knowledge levels may protect pregnant women against depression. Our findings contribute to understanding of the experience of pregnant women in developing countries during the COVID-19 pandemic. Healthcare Professionals should provide health education to all pregnant women and timely services to pregnant women with depressive symptoms. This may lead to the prevention of serious symptoms and reduce negative consequences on the next generation, not only in Jordan, but worldwide.

A scoping review protocol: Mapping the range of policy-related evidence influencing maternal health outcomes in a fragile, low-income country.

AIM: The aim of this scoping review is to map the range of policy-related evidence influencing maternal health outcomes and determine the cultural and contextual factors influencing maternal health in Myanmar, a low-income, fragile setting. DESIGN: Eligible studies identified will include maternal health-related policies, policy documents and research. All types of health-related policies aimed at targeting population health and well-being influencing maternal mortality and morbidity will be considered. METHODS: This scoping review has been developed using the Joanna Briggs Institute recommendations. The database search will include MEDLINE, CINAHL, Web of Science, Cochrane Library and the grey literature. Documents published in English and Burmese in the past 10 years will be included. Numerical data will be extracted and summarized in diagrammatic form, and a descriptive format will be used to present narrative accounts. Funding approval was granted by the Economic and Social Research Council in January 2020. This protocol was registered with OSF registries (Open-ended Registration) on 30 March 2021. DISCUSSION: Little is known about which strategies work best as there is less evidence related to health policy and contextual factors in which maternal health care is delivered in fragile, low-income settings. Understanding the context of maternal health is key to the planning and implementation of effective maternal health services designed to address women's needs. IMPACT: This review will map the range of policy-related evidence influencing maternal health outcomes in Myanmar and will underpin future large-scale research in other low-income and fragile settings. The results of this scoping review will provide recommendations for developing and improving practice and education for nurses and midwives working in resource-restricted contexts.

Attitudes Toward the Use of Voice-Assisted Technologies Among People With Parkinson Disease: Findings From a Web-Based Survey.

BACKGROUND: Speech problems are common in people living with Parkinson disease (PD), limiting communication and ultimately affecting their quality of life. Voice-assisted technology in health and care settings has shown some potential in small-scale studies to address such problems, with a retrospective analysis of user reviews reporting anecdotal communication effects and promising usability features when using this technology for people with a range of disabilities. However, there is a need for research to establish users' perspectives on the potential contribution of voice-assisted technology for people with PD. OBJECTIVE: This study aims to explore the attitudes toward the use of voice-assisted technology for people with PD. METHODS: A survey was approved for dissemination by a national charity, Parkinson's UK, to be completed on the web by people living with the condition. The survey elicited respondent demographics, PD features, voice difficulties, digital skill capability, smart technology use, voice-assisted technology ownership and use, confidentiality, and privacy concerns. Data were analyzed using descriptive statistics and summative content analysis of free-text responses. RESULTS: Of 290 participants, 79.0% (n=229) indicated that they or others had noticed changes in their speech or voice because of the symptoms of their condition. Digital skills and awareness were reported on 11 digital skills such as the ability to find a website you have visited before. Most participants (n=209, 72.1%) reported being able to perform at least 10 of these 11 tasks. Similarly, of 70.7% (n=205) participants who owned a voice-assisted device, most of them (166/205, 80.9%) used it regularly, with 31.3% (52/166) reporting that they used the technology specifically to address the needs associated with their PD. Of these 166 users, 54.8% (n=91) sometimes, rarely, or never had to repeat themselves when using the technology. When asked about speech changes since they started using it, 25% (27/108) of participants noticed having to repeat themselves less and 14.8% (16/108) perceived their speech to be clearer. Of the 290 respondents, 90.7% (n=263) were not concerned, or only slightly concerned, about privacy and confidentiality. CONCLUSIONS: Having been added to the homes of Western society, domestic voice assist devices are now available to assist those with communication problems. People with PD reported a high digital capability, albeit those who responded to a web-based survey. Most people have embraced voice-assisted technology, find it helpful and usable, and some have found benefit to their speech. Speech and language therapists may have a virtual ally that is already in the patient's home to support future therapy provision.

Challenges for palliative care day services: a focus group study.

BACKGROUND: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams. METHODS: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically. RESULTS: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services' effectiveness and value for money was highlighted. CONCLUSIONS: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.

Exploring the costs, consequences and efficiency of three types of palliative care day services in the UK: a pragmatic before-and-after descriptive cohort study.

BACKGROUND: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland. METHODS: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM). RESULTS: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121-£190 (excluding volunteer contribution) to £172-£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: - 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: - 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: - 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis. CONCLUSIONS: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS.

The emerging contribution of speech and language therapists in awake craniotomy: a national survey of their roles, practices and perceptions.

BACKGROUND: Awake craniotomy with electrical stimulation has become the gold standard for tumour resection in eloquent areas of the brain. Patients' speech during the procedure can inform the intervention and evidence for language experts to support the procedure is building. Within the UK a burgeoning speech and language therapist awake craniotomy network has emerged to support this practice. Further evidence is needed to underpin the specific contribution of speech and language therapists working within the awake craniotomy service. AIMS: To investigate and analyse the current practices of speech and language therapists: their role, pre-, intra- and postoperative assessment, and management practice patterns and skill set within awake craniotomy. METHODS & PROCEDURES: Speech and language therapists in the UK, who work in awake craniotomy, were invited to complete an online questionnaire. Participants were recruited via several networks supported by a social media campaign. Data were analysed using a mixed methodology approach including descriptive statistics, summative and conventional content analysis. OUTCOMES & RESULTS: A total of 24 speech and language therapists completed the survey, an unknown proportion of the available population. All four UK countries were represented. The majority were highly specialist clinicians 58% (n = 14) with the remainder clinical leads 25% (n = 6) or specialist clinicians 17% (n = 14). Only 29% (n = 7) had funding for awake craniotomy or had awake craniotomy in their job description. Median experience with awake craniotomy was 3 years. Median estimated contact time per case was 10.3 h. Current intraoperative practice is characterized by a sustained period of real-time, dynamic, informal assessment of speech, language, oromotor and cognitive functions. Respondents described a range of intraoperative clinical deficits that, once detected, are immediately communicated to surgeons. There was evidence of variable and diverse language mapping practices and barriers to the translation of information at multidisciplinary team level. Barriers to participation in awake craniotomy included lack of: standardized validated language mapping methods, funding, standardized training methods and guidance to direct practice. CONCLUSIONS & IMPLICATIONS: The evidence suggests areas of consistent practice patterns in preoperative preparation and intraoperative assessment. However, considerable variability exists within language testing and mapping that would benefit from validation. These speech and language therapists support improved outcomes of awake craniotomy by real-time intraoperative speech, language, oromotor and cognitive assessment, rapid detection of clinical deterioration and immediate communication to surgeons. Further research exploring intraoperative language testing, consistent use of language mapping terminology, and selection of test methods is recommended.

Patient and carer survey of remote vital sign telemonitoring for self-management of long-term conditions.

BACKGROUND: Home-based self-monitoring has failed to show intended savings to healthcare budgets yet it continues to emerge and gain popularity. OBJECTIVE: We set out to verify stakeholders' perspectives of remote vital sign telemonitoring. DESIGN: An observational design was adopted by devising a survey for distribution to service users and their informal carers. SAMPLE: Service users in South Eastern Health and Social Care Trust were included. A total of 274 questionnaires were issued. Data from 97 patients (35% response rate) and 49 carers were analysed. Of these, 81 patients and 48 of their carers experienced a monitoring service known as TF3 and 16 patients and 1 carer experienced a service known as U-Tell. The cohorts comprised people living with a number of long-term conditions: diabetes, hypertension after stroke, chronic heart failure, chronic obstructive pulmonary disorder, bronchiectasis and those requiring anticoagulation using warfarin. RESULTS: Analysis showed that respondents were supportive of the technology with 90.7% of patients agreeing or strongly agreeing with the statement: the remote monitoring system assisted me in managing my health on a day-to-day basis. The patients liked the technology largely because it provided empowerment and control for self-management and allowed them to continue with their lives without major disruption. These views were independent of the technology used and not associated with the patient's long-term conditions, gender or age. There were no reported adverse incidents. CONCLUSION: As self-monitoring becomes more relevant to healthcare delivery, the technology will be accepted by many in the population with long-term conditions.

A systematic review investigating if genetic or epigenetic markers are associated with postnatal depression.

BACKGROUND: Postnatal depression (PND) is common, affects the health of the mother, the development of the infant and places a large financial burden on services. Genetic and epigenetic biomarkers for PND could potentially improve the accuracy of current antenatal screening approaches. The aim of this systematic review is to report on the evidence for an association between genetic or epigenetic factors and postnatal depression. METHOD: A systematic search of five databases (Medline, EMBASE, PILOT, PsychINFO and SCOPUS) was carried out using the following (MeSh) terms and keywords: postpartum, depression, postnatal depression, genetics, genetic polymorphisms and epigenetics. Inclusion criteria were applied and quality of studies was assessed using guidelines from the HuGE Review Handbook (Little and Higgins, 2006). RESULTS: Following removal of duplicate articles, 543 remained; of these 37 met the inclusion criteria. Positive associations have been reported between PND and polymorphisms in the HMNC1, COMT, MAOT, PRKCB, ESR1, SLC6A4 genes in the presence of stressful life events, the BDNF gene when the postnatal period occurs during autumn and winter months and the OXT and OXTR genes in the presence of childhood adversity experienced by the mother. Epigenetic interactions with genotype, estrogen, and childhood adversity were identified that are predictive of PND. LIMITATIONS: The number of studies investigating some of the markers was small and grey literature was not included. CONCLUSION: This review highlights the importance of examining the interaction between epigenetic, genetic, hormonal and environmental factors in order to fully understand the risk factors for PND and to improve the accuracy of current antenatal and early postnatal screening procedures. Women susceptible to PND appear to have heightened epigenetic sensitivity to the physiological changes of childbirth or to environmental factors conferred by genotype.

Key components of knowledge transfer and exchange in health services research: Findings from a systematic scoping review.

AIMS: To identify the key common components of knowledge transfer and exchange in existing models to facilitate practice developments in health services research. BACKGROUND: There are over 60 models of knowledge transfer and exchange designed for various areas of health care. Many of them remain untested and lack guidelines for scaling-up of successful implementation of research findings and of proven models ensuring that patients have access to optimal health care, guided by current research. DESIGN: A scoping review was conducted in line with PRISMA guidelines. Key components of knowledge transfer and exchange were identified using thematic analysis and frequency counts. DATA SOURCES: Six electronic databases were searched for papers published before January 2015 containing four key terms/variants: knowledge, transfer, framework, health care. REVIEW METHODS: Double screening, extraction and coding of the data using thematic analysis were employed to ensure rigour. As further validation stakeholders' consultation of the findings was performed to ensure accessibility. RESULTS: Of the 4,288 abstracts, 294 full-text articles were screened, with 79 articles analysed. Six key components emerged: knowledge transfer and exchange message, Stakeholders and Process components often appeared together, while from two contextual components Inner Context and the wider Social, Cultural and Economic Context, with the wider context less frequently considered. Finally, there was little consideration of the Evaluation of knowledge transfer and exchange activities. In addition, specific operational elements of each component were identified. CONCLUSIONS: The six components offer the basis for knowledge transfer and exchange activities, enabling researchers to more effectively share their work. Further research exploring the potential contribution of the interactions of the components is recommended.