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Some trials have evaluated peer support for people with mental ill health in high-income, mainly English-speaking countries, but the quality of the evidence is weak.
Aims
To investigate the effectiveness of UPSIDES peer support in high-, middle- and low-income countries.
Method
This pragmatic multicentre parallel-group wait-list randomised controlled trial (registration: ISRCTN26008944) with three measurement points (baseline and 4 and 8 months) took place at six study sites: two in Germany, and one each in Uganda, Tanzania, Israel and India. Participants were adults with long-standing severe mental health conditions. Outcomes were improvements in social inclusion (primary) and empowerment, hope, recovery, health and social functioning (secondary). Participants allocated to the intervention group were offered UPSIDES peer support.
Results
Of the 615 participants (305 intervention group), 337 (54.8%) identified as women. The average age was 38.3 (s.d. = 11.2) years, and the mean illness duration was 14.9 (s.d. = 38.4) years. Those allocated to the intervention group received 6.9 (s.d. = 4.2) peer support sessions on average. Intention-to-treat analysis showed effects on two of the three subscales of the Social Inclusion Scale, Empowerment Scale and HOPE Scale. Per-protocol analysis with participants who had received three or more intervention sessions also showed an effect on the Social Inclusion Scale total score (β = 0.18, P = 0.031, 95% CI: 0.02–0.34).
Conclusions
Peer support has beneficial impacts on social inclusion, empowerment and hope among people with severe mental health conditions across diverse settings. As social isolation is a key driver of mental ill health, and empowerment and hope are both crucial for recovery, peer support can be recommended as an effective component of mental healthcare. Peer support has the potential to move global mental health closer towards a recovery- and rights-based orientation.
Good social connections are proposed to positively influence the course of cognitive decline by stimulating cognitive reserve and buffering harmful stress-related health effects. Prior meta-analytic research has uncovered links between social connections and the risk of poor health outcomes such as mild cognitive impairment, dementia, and mortality. These studies have primarily used aggregate data from North America and Europe with limited markers of social connections. Further research is required to explore these associations longitudinally across a wider range of social connection markers in a global setting.
Research Objective:
We examined the associations between social connection structure, function, and quality and the risk of our primary outcomes (mild cognitive impairment, dementia, and mortality).
Method:
Individual participant-level data were obtained from 13 longitudinal studies of ageing from across the globe. We conducted survival analysis using Cox regression models and combined estimates from each study using two-stage meta-analysis. We examined three social constructs: connection structure (living situation, relationship status, interactions with friends/family, community group engagement), function (social support, having a confidante) and quality (relationship satisfaction, loneliness) in relation to the risks of three primary outcomes (mild cognitive impairment, dementia, and mortality). In our partially adjusted models, we included age, sex, and education and in fully adjusted models used these variables as well as diabetes, hypertension, smoking, cardiovascular risk, and depression.
Preliminary results of the ongoing study:
In our fully adjusted models we observed: a lower risk of mild cognitive impairment was associated with being married/in a relationship (vs. being single), weekly community group engagement (vs. no engagement), weekly family/friend interactions (vs. not interacting), and never feeling lonely (vs. often feeling lonely); a lower risk of dementia was associated with monthly/weekly family/friend interactions and having a confidante (vs. no confidante); a lower risk of mortality was associated with living with others (vs. living alone), yearly/monthly/weekly community group engagement, and having a confidante.
Conclusion:
Good social connection structure, function, and quality are associated with reduced risk of incident MCI, dementia, and mortality. Our results provide actionable evidence that social connections are required for healthy ageing.
INDUCT (Interdisciplinary Network for Dementia Using Current Technology), and DISTINCT (Dementia Inter-sectorial strategy for training and innovation network for current technology) are two Marie Sklodowska-Curie funded International Training Networks that aimed to develop a multi-disciplinary, inter-sectorial educational research framework for Europe to improve technology and care for people with dementia, and to provide the evidence to show how technology can improve the lives of people with dementia.
Methods:
In INDUCT (2016-2020) 15 Early Stage Researchers worked on projects in the areas of Technology to support everyday life; technology to promote meaningful activities; and healthcare technology. In DISTINCT (2019-2023) 15 Early Stage Researchers worked on technology to promote Social health in three domains: fulfilling ones potential and obligations in society, managing one’s own life, and participation in social and other meaningful activities.
Both networks adopted three transversal objectives: 1) To determine practical, cognitive and social factors needed to make technology more useable for people with dementia; 2) To evaluate the effectiveness of specific contemporary technology; 3) To trace facilitators and barriers for implementation of technology in dementia care.
Results:
The main recommendations resulting from all research projects are integrated in a web-based digital Best Practice Guidance on Human Interaction with Technology in Dementia which was recently updated (Dec 2022 and June 2023) and will be presented at the congress. The recommendations are meant for different target groups, i.e. people in different stages of dementia, their (in)formal carers, policy makers, designers and researchers, who can easily find the recommendations relevant to them in the Best Practice Guidance by means of a digital selection tool.
Conclusions:
The INDUCT/DISTINCT Best Practice Guidance informs on how to improve the development, usage, impact and implementation of technology for people with dementia in various technology areas. This Best Practice Guidance is the result of intensive collaborative partnership of INDUCT and DISTINCT with academic and non-academic partners as well as the involvement of representatives of the different target groups throughout the projects.
To assess whether measurement and feedback of chlorhexidine gluconate (CHG) skin concentrations can improve CHG bathing practice across multiple intensive care units (ICUs).
Design:
A before-and-after quality improvement study measuring patient CHG skin concentrations during 6 point-prevalence surveys (3 surveys each during baseline and intervention periods).
Setting:
The study was conducted across 7 geographically diverse ICUs with routine CHG bathing.
Participants:
Adult patients in the medical ICU.
Methods:
CHG skin concentrations were measured at the neck, axilla, and inguinal region using a semiquantitative colorimetric assay. Aggregate unit-level CHG skin concentration measurements from the baseline period and each intervention period survey were reported back to ICU leadership, which then used routine education and quality improvement activities to improve CHG bathing practice. We used multilevel linear models to assess the impact of intervention on CHG skin concentrations.
Results:
We enrolled 681 (93%) of 736 eligible patients; 92% received a CHG bath prior to survey. At baseline, CHG skin concentrations were lowest on the neck, compared to axillary or inguinal regions (P < .001). CHG was not detected on 33% of necks, 19% of axillae, and 18% of inguinal regions (P < .001 for differences in body sites). During the intervention period, ICUs that used CHG-impregnated cloths had a 3-fold increase in patient CHG skin concentrations as compared to baseline (P < .001).
Conclusions:
Routine CHG bathing performance in the ICU varied across multiple hospitals. Measurement and feedback of CHG skin concentrations can be an important tool to improve CHG bathing practice.
Growth hormone (GH) deficiency is associated with decreased fertility. Since the placenta starts to produce a biologically active GH variant in the first gestational weeks, GH replacement therapy is usually stopped upon confirmation of conception or in the first trimester. Also acromegaly is associated with decreased fertility caused either by size effects of the pituitary adenoma that might lead to gonadotroph insufficiency or co-secretion of prolactin. Women with acromegaly should be treated in centers with adequate experience. In women with macroadenomas, transsphenoidal removal or size reduction of the adenoma prior to conception should be considered. The size of GH producing adenomas or residual tumors usually does not increase during pregnancy and symptoms of acromegaly might even improve due to hepatic GH resistance caused by high estrogen concentrations. In case of symptomatic tumor growth during pregnancy pharmacologic therapy with the somatostatin analogs octreotide and lanreotide might be considered before surgery. Comorbidities of acromegaly such as impaired glucose tolerance, diabetes, and hypertension deserve special attention. Rebound disease activity after delivery is frequent.
What does it mean to have a good life? Why has it proved so difficult for people with intellectual disabilities to live one? This important book explores these questions, provides an analysis of related policies and underpinning ideologies and looks to how a good life may be made more attainable.
To evaluate whether a series of quality improvement interventions to promote safe perioperative use of cephalosporins in penicillin-allergic patients improved use of first-line antibiotics and decreased costs.
Design:
Before-and-after trial following several educational interventions.
Setting:
Academic medical center.
Patients:
This study included patients undergoing a surgical procedure involving receipt of a perioperative antibiotic other than a penicillin or carbapenem between January 1, 2017, and August 31, 2019. Patients with and without a penicillin allergy label in their electronic medical record were compared with respect to the percentage who received a cephalosporin and average antibiotic cost per patient.
Methods:
A multidisciplinary team from infectious diseases, allergy, anesthesiology, surgery, and pharmacy surveyed anesthesiology providers about their use of perioperative cephalosporins in penicillin-allergic patients. Using findings from that survey, the team designed a decision-support algorithm for safe utilization and provided 2 educational forums to introduce this algorithm, emphasizing the safety of cefazolin or cefuroxime in penicillin-allergic patients without history of a severe delayed hypersensitivity reaction.
Results:
The percentage of penicillin-allergic patients receiving a perioperative cephalosporin improved from ∼34% to >80% following algorithm implementation and the associated educational interventions. This increase in cephalosporin use was associated with a ∼50% reduction in antibiotic cost per penicillin-allergic patient. No significant adverse reactions were reported.
Conclusions:
An educational antibiotic stewardship intervention produced a significant change in clinician behavior. A simple intervention can have a significant impact, although further study is needed regarding whether this response is sustained and whether an educational intervention is similarly effective in other healthcare systems.
Epidemic intelligence activities are undertaken by the WHO Regional Office for Africa to support member states in early detection and response to outbreaks to prevent the international spread of diseases. We reviewed epidemic intelligence activities conducted by the organisation from 2017 to 2020, processes used, key results and how lessons learned can be used to strengthen preparedness, early detection and rapid response to outbreaks that may constitute a public health event of international concern. A total of 415 outbreaks were detected and notified to WHO, using both indicator-based and event-based surveillance. Media monitoring contributed to the initial detection of a quarter of all events reported. The most frequent outbreaks detected were vaccine-preventable diseases, followed by food-and-water-borne diseases, vector-borne diseases and viral haemorrhagic fevers. Rapid risk assessments generated evidence and provided the basis for WHO to trigger operational processes to provide rapid support to member states to respond to outbreaks with a potential for international spread. This is crucial in assisting member states in their obligations under the International Health Regulations (IHR) (2005). Member states in the region require scaled-up support, particularly in preventing recurrent outbreaks of infectious diseases and enhancing their event-based surveillance capacities with automated tools and processes.
Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.
Every year, 71% of all deaths globally are due to NCDs. Over 85% of these deaths occur in low- and middle-income countries (LMICs), with 36% of all reported deaths in Rwanda attributed to NCDs. Approximately 24 million lives are lost each year in LMICs due to emergency medical conditions. The collaboration between VCU and the EMS Rwanda designed and implemented a pre-hospital medical emergencies training course and train-the-trainers program to address the rise of NCDs.
Methods:
During the course, pre and post 50 assessment questions were administered. Two cohorts participated 25 prehospital staff identified by EMS to form an instructor core and 19 emergency staff from public hospitals who are likely to respond to local emergencies in the community. A two-day EMCC was developed using established best practices. The Instructor core completed EMCC 1 and a one-day educator course and then taught the second cohort (EMCC2). Student’s t-test and matched paired t-tests were used to evaluate the assessments.
Results:
Mean score on EMCC 1 was 43% (SD: 20) compared to 85% (SD: 5) on post-course assessment. Pre-assessment failure rate was 88%. Mean scores for EMCC 2 were 45% (SD: 14) and 81% (SD: 10) on post-assessment. Pre-assessment score was low (50%). A paired t-test comparing pre-course to post-course assessment means demonstrated an increase by 42% (SD 30) for EMCC 1 (p<0.001) and 37% (SD: 14) for EMCC 2 (p<0.001) with 95% confidence. No items had to be removed from analysis based on the discrimination index (di).
Discussion:
NCDs often present as emergencies such as myocardial infarction and stroke. Effective management of these in the prehospital setting is essential to optimal outcomes. This study effectively implemented a training program in Kigali, Rwanda and created an instructor core to allow scale-up of effective pre-hospital services across the country.
Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research (CSER) Consortium. The authors then negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death.
Decreases in children's anger reactivity because of the onset of their autonomous use of strategies characterizes the prevailing model of the development of emotion regulation in early childhood (Kopp, 1989). There is, however, limited evidence of the varied pathways that mark this development and their proposed antecedents and consequences. This study used a person-centered approach to identify such pathways, antecedents, and outcomes. A sample of 120 children from economically strained rural and semirural households were observed while waiting to open a gift at ages 24, 36, and 48 months. Multitrajectory modeling of children's anger expressions and strategy use yielded three subgroups. As they aged, typically developing children's strategy use (calm bids and focused distraction) increased while anger expressions decreased. Later developing children, though initially elevated in anger expression and low in strategy use, demonstrated marked growth across indicators and did not differ from typically developing children at 48 months. At-risk children, despite developing calm bidding skills, did not display longitudinal self-distraction increases or anger expression declines. Some predicted antecedents (12–24 month child language skills and language-capitalizing parenting practices) and outcomes (age 5 years externalizing behavior) differentiated pathways. Findings illustrate how indicator-specific departures from typical pathways signal risk for behavior problems and point to pathway-specific intervention opportunities.
The legend of Tristan and Isolde -- the archetypal narrative about the turbulent effects of all-consuming, passionate love -- achieved its most complete and profound rendering in the German poet Gottfried von Strassburg's verse romance Tristan (ca. 1200-1210). Along with his great literary rival Wolfram von Eschenbach and his versatile predecessor Hartmann von Aue, Gottfried is considered one of three greatest poets produced by medieval Germany, and over the centuries his Tristan has lost none of its ability to attract with the beauty of its poetry and to challenge -- if not provoke -- with its sympathetic depiction of adulterous love. The essays, written by a dozen leading Gottfried specialists in Europe and North America, provide definitive treatments of significant aspectsof this most important and challenging high medieval version of the Tristan legend. They examine aspects of Gottfried's unparalleled narrative artistry; the important connections between Gottfried'sTristan and the socio-cultural situation in which it was composed; and the reception of Gottfried's challenging romance both by later poets in the Middle Ages and by nineteenth- and twentieth-century authors, composers, and artists -- particularly Richard Wagner. The volume also contains new interpretations of significant figures, episodes, and elements (Riwalin and Blanscheflur, Isolde ofthe White Hands, the Love Potion, the performance of love, the female figures) in Gottfried's revolutionary romance, which provocatively elevates a sexual, human love to a summum bonum.
Will Hasty is Professor of German at the University of Florida. He is the editor of Companion to Wolfram's "Parzival," (Camden House, 1999).
This 12 month, Australian study sought to compare the Capabilities Model of Dementia Care (CMDC) with usual long-term care (LTC), in terms of (1) the effectiveness of the CMDC in assisting care staff to improve Quality Of Life (QOL) for older people with dementia; and (2) whether implementation of the CMDC improved staff attitudes towards, and experiences of working and caring for the person with dementia.
Methods:
A single blind, non-randomized controlled trial design, involving CMDC intervention group (three facilities) and a comparison usual LTC practice control group (one facility), was conducted from August 2010 to September 2011. Eighty-one staff members and 48 family members of a person with dementia were recruited from these four LTC facilities. At baseline, 6 and 12 months, staff completed a modified Staff Experiences of Working with Demented Residents questionnaire (SEWDR), and families completed the Quality of Life – Alzheimer's Disease questionnaire (QOL-AD).
Results:
LTC staff in the usual care group reported significantly lower SEWDR scores (i.e. less work satisfaction) than those in the CMDC intervention group at 12 months (p = 0.005). Similarly, family members in the comparison group reported significantly lower levels of perceived QOL for their relative with dementia (QOL-AD scores) than their counterparts in the CMDC intervention group at 12 months (p = 0.012).
Conclusions:
Although the study has a number of limitations the CMDC appears to be an effective model of dementia care – more so than usual LTC practice. The CMDC requires further evaluation with participants from a diverse range of LTC facilities and stages of cognitive impairment.
The debate about how to manage individual research results and incidental findings in genetic and genomic research has focused primarily on what information, if any, to offer back to research participants. However, increasing controversy surrounds the question of whether researchers have any responsibility to offer a participant’s results (defined here to include both individual research results and incidental findings) to the participant’s relatives, including after the participant’s death. This question arises in multiple contexts, including when researchers discover a result with potentially important health implications for genetic relatives, when a participant’s relatives ask a researcher whether any research results about the participant have implications for their own health or reproductive planning, when a participant’s relative asks whether any of the participant’s results have implications for a child’s health, and when the participant is deceased and the participant’s relatives seek information about the participant’s genetic results in order to address their own health or reproductive concerns.
The cover for this book is a painting by Philip Kearney who is a disabled artist in Ireland. We chose this as the cover because it seemed an appropriate metaphor both for this book and for a good life.
The good life as we understand it involves a journey. It is a voyage of discovery. We begin it at birth and end it probably with our death. We each set out in small boats on unknown seas. Some of us are better sailors than others and are well equipped for travel. Some of us have sturdier boats and more provisions. The seas on which we voyage are unknown to us although they are not altogether uncharted. As we have seen in this book, many previous explorers have recorded their voyages and have noted some of the hazards and wrong turnings as well as providing some guidance along the way. We are not alone in our travels, others share our boat for varying lengths of time, offering support and assistance. And as you can see from the painting, other boats are with us. However we should remain always captain of our journey.
In our search for a good life we are truly explorers. Our destination is not known to us at the beginning of the voyage and is only slowly discovered. And although we may form ideas about what it may be as we travel, these can change with time and circumstances. Our attention is divided between the necessities of keeping our boat afloat and moving and on the learning that we acquire as we go along. The values and ideas about a good life that we acquire as we travel inform our voyage and shape its destination. In this conclusion we explore the implications of making a good life central in our consideration of, and work with, people with intellectual disabilities.
Making a good life central
In our view there are sound reasons for making a good life a central consideration in the lives of people with intellectual disabilities. Our policies and practices are currently predicated on a view that life can be better for people with intellectual disabilities, not that they can and should lead good lives.