Self-report instruments measuring aspects of self for people living with dementia: A systematic literature review of psychosocial interventions.

OBJECTIVE: A positive sense of self may be a key domain of psychological well-being for people living with dementia and therefore a legitimate target for psychosocial interventions in dementia care. Determining the effectiveness of such interventions often requires valid self-report instruments. This review aimed to investigate what aspects of self have been measured using self-report instruments in evaluating psychosocial interventions for people living with dementia and to explore the effectiveness of these interventions in terms of positive outcomes related to aspects of self. METHOD: A systematic search of the literature using five electronic databases and one register (CENTRAL) was conducted. A narrative synthesis and methodological quality assessment was completed for the included studies. RESULTS: A total of 24 studies were included in the review. Seven aspects of self were measured using a range of self-report instruments, many of which have not been validated for dementia. Aspects of self were; self-esteem, self-efficacy, self-compassion, self-growth, self-acceptance, self-management, and self-identity. Studies included a variety of interventions; however, the effectiveness of these interventions for these aspects of self was mixed. CONCLUSION: There is some evidence that psychosocial interventions improve specific aspects of self in dementia but further research to improve this evidence base is needed. Future research should also investigate and confirm the validity and reliability of existing self-report instruments that aim to measure aspects of self in dementia. Limitations and implications of the review are discussed.

A participatory approach to understand what might be most meaningful to people living with dementia in a positive psychology intervention.

OBJECTIVES: This study aimed to understand which character strengths are most important for people living with dementia and therefore which strengths-based psychological interventions could be most meaningful and acceptable. METHODS: A participatory design, utilising Delphi methodology, was incorporated into an iterative three stage framework: (1) literature reviewed for Positive Psychology (PP) interventions and patient public involvement to define the character strengths; (2) modified Delphi (N = 10) identified which character strengths are most important for living with dementia; (3) focus groups (N = 14) explored which PP interventions are most acceptable and meaningful. Qualitative data from the focus groups was analysed using thematic analysis. RESULTS: Love, kindness and humour were deemed the most important character strengths for living with dementia. Qualitative data from the focus groups was captured in three superordinate themes: (1) lack of opportunity not capacity; (2) key considerations of PP interventions for people living with dementia; and (3) potential benefits of PP interventions. CONCLUSIONS: Love, kindness and humour come naturally to people with dementia, but people may lack social opportunities to use these strengths. Therefore, a PP intervention promoting positive emotion, social relationships and connection to one's values appears most meaningful and acceptable as this may provide a social context to use and maintain these strengths.

Impact of Medicaid Expansion on Abdominal Surgery Morbidity, Mortality, and Hospital Readmission.

INTRODUCTION: Medicaid expansion's (ME) impact on postoperative outcomes after abdominal surgery remains poorly defined. We aimed to evaluate ME's effect on surgical morbidity, mortality, and readmissions in a state that expanded Medicaid (Virginia) compared to a state that did not (Tennessee) over the same time period. METHODS: Virginia Surgical Quality Collaborative (VSQC) American College of Surgeons National Surgical Quality Improvement Program data for Medicaid, uninsured, and private insurance patients undergoing abdominal procedures before Virginia's ME (3/22/18-12/31/18) were compared with post-ME (1/1/19-12/31/19), as were corresponding non-ME state Tennessee Surgical Quality Collaborative (TSQC) data for the same 2018 and 2019 time periods. Postexpansion odds ratios for 30-d morbidity, 30-d mortality, and 30-d unplanned readmission were estimated using propensity score-adjusted logistic regression models. RESULTS: In Virginia, 4753 abdominal procedures, 2097 pre-ME were compared to 2656 post-ME. In Tennessee, 5956 procedures, 2484 in 2018 were compared to 3472 in 2019. VSQC's proportion of Medicaid population increased following ME (8.9% versus 18.8%, P < 0.001) while uninsured patients decreased (20.4% versus 6.4%, P < 0.001). Post-ME VSQC had fewer 30-d readmissions (12.2% versus 6.0%, P = 0.013). Post-ME VSQC Medicaid patients had significantly lower probability of morbidity (-8.18, 95% confidence interval: -15.52 ∼ -0.84, P = 0.029) and readmission (-6.92, 95% confidence interval: -12.56 ∼ -1.27, P = 0.016) compared to pre-ME. There were no differences in probability of morbidity or readmission in the TSQC Medicaid population between study periods (both P > 0.05); there were no differences in mortality between study periods in VSQC and TSQC patient populations (both P > 0.05). CONCLUSIONS: ME was associated with decreased 30-d morbidity and unplanned readmissions in the VSQC. Data-driven policies accounting for ME benefits should be considered.

The meaning and experience of hope by people living with dementia as expressed through poetry.

BACKGROUND: Narratives of dementia can undermine the ability of people to live well. Positive psychology, concerned with the cultivation of personal strengths, is a model through which people's capacity to have positive experiences can be researched. This study explored the meanings and experiences of hope, a positive psychological construct found to facilitate well-being, in people with dementia. METHODS: People with dementia submitted poems about the meanings and their experiences of hope through an online platform. The submitted poems (n = 29) underwent thematic analysis. FINDINGS: There were three main themes: (1) "hope is light in the darkness" encapsulated the meaning ascribed to hope as a resource that spotlights what is still possible, (2) "poetry gives voice to experiences of hope" captured the role of poetry in communicating the otherwise elusive concept of hope, and (3)"peers uphold hope and cast away the darkness" captured that participants' hope was blocked by stigmatising views held and expressed by others but facilitated through positive social interactions. CONCLUSIONS: People are capable of having hope in the context of dementia, with hope being a uniquely functional strength that supports wellbeing. Health professionals, family and society have a clear role in supporting people with dementia to maintain their hope.

Clinical utility of small bowel ultrasound assessment of Crohn's disease in adults: a systematic scoping review.

Background: Ultrasound (US) is an alternative to magnetic resonance enterography, and has the potential to significantly reduce waiting times, expedite clinical decision-making and improve patient experience. Point of care US is an advantage of the US imaging modality, where same day scanning, interpretation and treatment decisions can be made. Aim: To systematically scope the literature on point of care US use in small bowel Crohn's disease, generating a comprehensive list of factors relating to the current understanding of clinical utility of this imaging modality. Methods: Searches included MEDLINE, EMBASE, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, clinicaltrial.gov,'TRIP' and Epistemonikos. Reference lists of included studies were hand searched. Search terms were searched for as both keywords and subject headings (MeSH) as appropriate. Searches were performed with the 'suggested search terms' and 'explode' selection, and restricted to 'human', 'adult' and 'English language' publications. No date limits were applied to be as inclusive as possible. Two investigators conducted abstract and full-text review. No formal quality appraisal process was undertaken; however, quality of sources was considered when reporting findings. A narrative synthesis was conducted. Results: The review included 42 sources from the UK, Europe, Japan, Canada and the USA. Small bowel ultrasound (SBUS) has been shown to be as accurate in detecting the presence of small bowel Crohn's disease, is quicker, safer and more acceptable to patients, compared with magnetic resonance enterography. SBUS is used widely in central Europe and Canada but has not been embraced in the UK. Further research considering economic evaluation, clinical decision-making and exploration of perceived barriers to future implementation of SBUSs is required.

The meaning and experience of gratitude for people living with dementia.

RATIONALE: Supporting people to live well with dementia is an international government priority. People living with dementia experience a range of positive emotions despite the challenges associated with dementia. Further research is needed to explore how these positive experiences can be fostered to support well-being. There is empirical evidence of the benefits of gratitude in other clinical groups, but no studies have explored how gratitude is experienced by people living with dementia. METHODS: In this mixed-methods study, eight people living with dementia shared their experiences of gratitude through interviews and gratitude diaries. Qualitative data were analysed using interpretative phenomenological analysis. Quantitative data regarding diary use were analysed using descriptive statistics. FINDINGS AND CONCLUSIONS: Gratitude holds interpersonal and transpersonal meanings for people living with dementia, balanced with challenges of dementia and ageing. This study offers insight into the existence and relevance of gratitude for people living with dementia, highlighting the importance of using multiple methods in dementia research. Positive psychology interventions informed by these findings may be effective in supporting well-being for people with dementia.

Exploring variation in ambulance calls and conveyance rates for adults with diabetes mellitus who contact the Northern Ireland Ambulance Service: a retrospective database analysis.

BACKGROUND: People with diabetes frequently contact the ambulance service about acute problems. Overall, treating diabetes and its associated complications costs the NHS 10% of the annual budget. Reducing unnecessary hospital admissions and ambulance attendances is a high priority policy for the NHS across the UK. This study aimed to determine the characteristics of emergency calls for people with diabetes who contact the ambulance service and are subsequently conveyed to hospital by the Northern Ireland Ambulance Service (NIAS). METHODS: A retrospective dataset from the NIAS was obtained from the NIAS Trust's Command and Control system relating to calls where the final complaint group was 'Diabetes' for the period 1 January 2017 to 23 November 2019. RESULTS: Of a total 11,396 calls related to diabetes, 63.2% of callers to the NIAS were conveyed to hospital. Over half of the calls related to males, with 35.5% of callers aged 60-79. The more deprived areas had a higher frequency of calls and conveyance to hospital, with this decreasing as deprivation decreased. Calls were evenly distributed across the week, with the majority of calls originating outside of GP working hours, although callers were more likely to be conveyed to hospital during working hours. Calls from healthcare professionals were significantly more likely to be conveyed to hospital, despite accounting for the minority of calls. CONCLUSION: This research found that older males were more likely to contact the ambulance service but older females were more likely to be conveyed to hospital. The likelihood of conveyance increased if the call originated from an HCP or occurred during GP working hours. The availability of alternative care pathways has the potential to reduce conveyance to hospital, which has been particularly important during the COVID-19 pandemic. Integration of data is vitally important to produce high quality research and improve policy and practice in this area.

Assessment of cytokines, microRNA and patient related outcome measures in conversion disorder/functional neurological disorder (CD/FND): The CANDO clinical feasibility study.

BACKGROUND: Conversion disorder/functional neurological disorder (CD/FND) occurs often in neurological settings and can lead to long-term distress, disability and demand on health care services. Systemic low-grade inflammation might play a role, however, the pathogenic mechanism is still unknown. AIM: 1) To explore the feasibility to establish and assess a cohort of CD/FND with motor symptoms, involving persons with lived experience (PPI). 2) To generate proof of concept regarding a possible role for cytokines, microRNA, cortisol levels and neurocognitive symptoms in patients with motor CD/FND. METHOD: Feasibility study. RESULTS: The study showed active involvement of patients despite high clinical illness burden and disability, neurocognitive symptoms, childhood adverse experiences (ACE) and current life events. The study provided valuable knowledge regarding the feasibility of conducting a study in these patients that will inform future study phases. In the sample there were elevated levels of IL6, IL12, IL17A, IFNg, TNFa and VEGF-a, suggesting systemic low-grade inflammation. Also, microRNAs involved in inflammation and vascular inflammation were correlated with TNFa and VEGFa respectively, suggesting proof of concept for an epigenetic mechanism. Owing to the COVID-19 outbreak, the patient sample was limited to 15 patients. CONCLUSION: It is a novelty that this study is conducted in the clinical setting. This innovative, translational study explores stress-related SLI in CD/FND patients and the feasibility of a larger project aiming to develop new treatments for this vulnerable population. Given the positive findings, there is scope to conduct further research into the mechanism of disease in CD/FND.

"Camouflaging" by adolescent autistic girls who attend both mainstream and specialist resource classes: Perspectives of girls, their mothers and their educators.

LAY ABSTRACT: There are a range of different types of schools that support children diagnosed with autism, including mainstream schools (where pupils are taught in general classrooms) and specialist schools (where pupils are exclusively taught alongside other children with special educational needs). An intermediary option involves resource bases attached to mainstream schools, which enable children to transition between mainstream and specialist educational settings. Autistic girls use a variety of strategies to negotiate the expectations and demands of school life. One of these strategies is known as camouflaging. This involves 'hiding' autism-based behaviours and developing ways to manage social situations, with the aim of fitting in with others. Research has shown that camouflaging can help to meet social expectations and friendships, but it can also result in challenges, including exhaustion and anxiety. In this study, we conducted detailed interviews with eight autistic girls, their parents and their school staff. The results showed that the girls tried to use camouflaging strategies to hide their autism and learning needs, especially within mainstream classrooms. Their camouflaging was often unsuccessful, which affected their relationships and sense of belonging. They also found camouflaging exhausting and distressing, which may (when combined with the demands of the classroom) affect their relationships, learning and mental health. This research provides important implications for supporting autistic girls who attend resource bases. These focus around increasing awareness of camouflaging and ways to support autistic girls, so they are included and able to fully participate and learn within school.

Introduction of point-of-care ROTEM testing in the emergency department of an Australian level 1 trauma centre and its effect on blood product use.

OBJECTIVE: To assess whether the introduction of point-of-care rotational thromboelastometry (ROTEM) analysis influences blood product transfusion and coagulation management in a modern Australian level 1 trauma centre. METHODS: Retrospective blood transfusion data collection from all level 1 trauma patients with an Injury Severity Score (ISS) >12 presenting to the Royal Adelaide Hospital in 2016 and 2018. Evaluation of changes in blood product administration with the addition of point-of-care viscoelastic testing in the ED in 2018. RESULTS: A total of 774 patients were analysed with 380 in 2016 and 394 in 2018. Almost a quarter of all 2018 trauma patients (93/394) had ROTEM performed within 24 h of ED arrival, 42% of these having an ISS >25. There was a significant increase in the number of patients receiving cryoprecipitate following the introduction of ROTEM (P = 0.01). In those receiving cryoprecipitate, there was a significant reduction in subsequent platelet and fresh frozen plasma use (P < 0.001). Overall, there was a reduction in expenditure on red cells, platelets and fresh frozen plasma from 2016 to 2018. CONCLUSION: Point-of-care ROTEM was performed in a small proportion of patients, mainly those with a higher ISS. ROTEM introduction in the ED altered blood product transfusion practices for major trauma patients with an ISS >12, leading to a potentially safer transfusion strategy and cost savings for key blood products.

Measuring the well-being of people with dementia: a conceptual scoping review.

BACKGROUND: Enabling people with dementia to 'live well' is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures. METHODS: Three scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined. FINDINGS: Six conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia. CONCLUSION: An assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based 'in-the-moment' measurement.

Shared Experiences of Resilience Amongst Couples Where One Partner Is Living With Dementia-A Grounded Theory Study.

Resilience is a concept which may help explain how older people are able to live well with dementia. Existing resilience research in dementia focuses on the caregiver and relatively little is known about how dyads (person with dementia and care partner) experience resilience. Using constructivist grounded theory, this qualitative study aimed to develop a theory of shared resilience amongst couples where one partner is living with dementia. Interviews were conducted with 12 dyads (n = 24) to explore their shared understanding of resilience, what helps to develop and maintain their resilience and how resilience shapes their relationship and mutual well-being. Findings indicate that resilience was experienced as continuing with a "normal" life as a couple notwithstanding the impact of dementia. This is in contrast to models of resilience which emphasize bouncing back or flourishing in the face of adversity. Instead, couples described a shared resilience that enabled them to maintain their couplehood, a sense of togetherness and reciprocity in their relationship, which in turn provided a further source of resilience. Findings emphasize the importance of dyadic research in developing a clearer understanding of the experience of living well with dementia. Interventions aimed at building resilience should engage dyads to consider how the couple's shared resilience can be maintained and enhanced.

A qualitative study of the shared experience of humour between people living with dementia and their partners.

Humour is a complex social and emotional experience which could constitute a positive resource for people endeavouring to live well with dementia. However, little is currently known about the shared use and value of humour in dyads where one person has dementia. The purpose of this study was therefore to explore how people with dementia and their care-partners experience, use and draw meaning from humour in relation to their shared experiences of dementia and their ongoing relationships. Ten participant dyads (the person with dementia and their spousal partner) took part in joint semi-structured interviews. Interpretative Phenomenological Analysis revealed eight subthemes that were subsumed under three super-ordinate themes: 'Humour Has Always Been There (and Always Will Be)'; 'Withstanding Dementia' and 'Renewing the Value of Humour in Dementia'. Overall, the findings suggest that humour, in different forms, can represent a salient and enduring relationship strength that helps dyads maintain well-being and couplehood by providing a buffer against stressors associated with dementia. The findings highlight the potential value of integrating a dyadic perspective with strengths-based approaches in future research into how people live well with dementia.

Through the eyes of others - the social experiences of people with dementia: a systematic literature review and synthesis.

ABSTRACTBackground:Psychosocial models suggest that the lived experience of dementia is affected by interpersonal factors such as the ways in which others view, talk about, and behave toward the person with dementia. This review aimed to illuminate how informal, everyday interpersonal relationships are experienced by people with dementia within their social contexts. METHOD: A systematic review of qualitative literature published between 1989 and May 2016 was conducted, utilizing the electronic databases PsycINFO, MEDLINE, and CINAHL-Complete. This was followed by a critical interpretative synthesis to understand how people with dementia perceive the attitudes, views, and reactions of other people toward them, and the subjective impact that these have. RESULTS: Four major themes were derived from the findings of the 23 included studies: being treated as an "other" rather than "one of us"; being treated as "lesser" rather than a full, valued member of society; the impact of others' responses; and strategies to manage the responses of others. Thus, people with dementia can feel outcast and relegated, or indeed feel included and valued by others. These experiences impact upon emotional and psychological well-being, and are actively interpreted and managed by people with dementia. CONCLUSION: Experiences such as loss and diminishing identity have previously been understood as a direct result of dementia, with little consideration of interpersonal influences. This review notes that people with dementia actively engage with others, whose responses can foster or undermine social well-being. This dynamic relational aspect may contribute to emerging understandings of social health in dementia.

An interpretative phenomenological analysis of the experiences of older people self-managing cancer pain at home.

Cancer is predominantly an illness affecting older people, yet there is a higher risk of under-treated pain in this age group. Many older people are required to self-manage their cancer pain at home but this is currently an under-researched and poorly understood area. We explored the experiences of older adults who self-manage cancer pain at home using an Interpretative Phenomenological Analytic approach. Eight older adults (aged 72-85 years) were recruited from a hospital in the United Kingdom and interviewed using a semi-structured questionnaire. Themes which emerged from the analysis suggest the self-management of cancer pain involves a perceived loss of control followed by a temporal process of gaining control over pain. Subordinate themes reflected the physical and social restrictions caused by pain; leading to fears regarding familial burden. Participants utilized inner strengths, past experiences, and social support to cope. Successful self-management of cancer pain in late life is conceptualized utilizing a positive psychology framework.

Improving Safe Sleep Modeling in the Hospital through Policy Implementation.

Introduction Sleep-related infant deaths are major contributors to Tennessee's high infant mortality rate. The purpose of this initiative was to evaluate the impact of policy-based efforts to improve modeling of safe sleep practices by health care providers in hospital settings across Tennessee. Methods Safe sleep policies were developed and implemented at 71 hospitals in Tennessee. Policies, at minimum, were required to address staff training on the American Academy of Pediatrics' safe sleep recommendations, correct modeling of infant safe sleep practices, and parent education. Hospital data on process measures related to training and results of crib audits were compiled for analysis. Results The overall observance of infants who were found with any risk factors for unsafe sleep decreased 45.6% (p ≤ 0.001) from the first crib audit to the last crib audit. Significant decreases were noted for specific risk factors, including infants found asleep not on their back, with a toy or object in the crib, and not sleeping in a crib. Significant improvements were observed at hospitals where printed materials or video were utilized for training staff compared to face-to-face training. Discussion Statewide implementation of the hospital policy intervention resulted in significant reductions in infants found in unsafe sleep situations. The most common risk factors for sleep-related infant deaths can be modeled in hospitals. This effort has the potential to reduce sleep-related infant deaths and ultimately infant mortality.

An implantable ENG detector with in-system velocity selective recording (VSR) capability.

Detection and classification of electroneurogram (ENG) signals in the peripheral nervous system can be achieved by velocity selective recording (VSR) using multi-electrode arrays. This paper describes an implantable VSR-based ENG recording system representing a significant development in the field since it is the first system of its type that can record naturally evoked ENG and be interfaced wirelessly using a low data rate transcutaneous link. The system consists of two CMOS ASICs one of which is placed close to the multi-electrode cuff array (MEC), whilst the other is mounted close to the wireless link. The digital ASIC provides the signal processing required to detect selectively ENG signals based on velocity. The design makes use of an original architecture that is suitable for implantation and reduces the required data rate for transmission to units placed outside the body. Complete measured electrical data from samples of the ASICs are presented that show that the system has the capability to record signals of amplitude as low as 0.5 µV, which is adequate for the recording of naturally evoked ENG. In addition, measurements of electrically evoked ENG from the explanted sciatic nerves of Xenopus Laevis frogs are presented.