Dataset Information

The impact of intellectual disability nurse specialists in the United Kingdom and Eire Ireland: An integrative review.

ABSTRACT:

Aim

To identify and evaluate the impact of Intellectual Disability Nurse Specialists person-centred care for people with intellectual disability.

Design

An Integrative review of the literature was performed between January 2007-December 2017.

Methods

Searching the PubMed Library of Medicine, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline Ovid, PsychINFO, Health Source: Nursing/Academic edition. A total of eight articles were selected for the final study example, including four mixed methods studies and four qualitative studies.

Results

Three Intellectual Disability Nurse Specialist models were evaluated, and three main themes emerged: person-centred care, organizational and practice development.

Conclusion

The Intellectual Disability Nurse Specialist expert knowledge and skills contribute to the development of effective systems and processes. The results highlighted the complex nature of the Intellectual Disability Nurse Specialist role and the importance of ongoing development, promotion and evaluation and their contribution to care in the healthcare setting.

SUBMITTER: Bur J

PROVIDER: S-EPMC8363355 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundThe Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV.MethodsWe conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; > 0.7 acceptable), and test-retest reliability (Intra Class Correlation Coefficient; > 0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity).ResultsThree hundred fifty nine participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test-retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19-25 out of 100), followed by the presence (MDC95% range: 37-54) and episodic scales (MDC95% range:44-76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed.ConclusionsThe EDQ possesses internal consistency reliability, construct validity, and test-retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV.

Project description:BackgroundPediatric disorders include a range of highly penetrant, genetically heterogeneous conditions amenable to genomewide diagnostic approaches. Finding a molecular diagnosis is challenging but can have profound lifelong benefits.MethodsWe conducted a large-scale sequencing study involving more than 13,500 families with probands with severe, probably monogenic, difficult-to-diagnose developmental disorders from 24 regional genetics services in the United Kingdom and Ireland. Standardized phenotypic data were collected, and exome sequencing and microarray analyses were performed to investigate novel genetic causes. We developed an iterative variant analysis pipeline and reported candidate variants to clinical teams for validation and diagnostic interpretation to inform communication with families. Multiple regression analyses were performed to evaluate factors affecting the probability of diagnosis.ResultsA total of 13,449 probands were included in the analyses. On average, we reported 1.0 candidate variant per parent-offspring trio and 2.5 variants per singleton proband. Using clinical and computational approaches to variant classification, we made a diagnosis in approximately 41% of probands (5502 of 13,449). Of 3599 probands in trios who received a diagnosis by clinical assertion, approximately 76% had a pathogenic de novo variant. Another 22% of probands (2997 of 13,449) had variants of uncertain significance in genes that were strongly linked to monogenic developmental disorders. Recruitment in a parent-offspring trio had the largest effect on the probability of diagnosis (odds ratio, 4.70; 95% confidence interval [CI], 4.16 to 5.31). Probands were less likely to receive a diagnosis if they were born extremely prematurely (i.e., 22 to 27 weeks' gestation; odds ratio, 0.39; 95% CI, 0.22 to 0.68), had in utero exposure to antiepileptic medications (odds ratio, 0.44; 95% CI, 0.29 to 0.67), had mothers with diabetes (odds ratio, 0.52; 95% CI, 0.41 to 0.67), or were of African ancestry (odds ratio, 0.51; 95% CI, 0.31 to 0.78).ConclusionsAmong probands with severe, probably monogenic, difficult-to-diagnose developmental disorders, multimodal analysis of genomewide data had good diagnostic power, even after previous attempts at diagnosis. (Funded by the Health Innovation Challenge Fund and Wellcome Sanger Institute.).

Project description:ObjectivesTo capture the extent and nature of intellectual disability nursing publications in Ireland.DesignScoping review using Arksey and O'Malley approach.Data sourcesSix databases (PsycINFO, CINAHL, Medline, Academic Search Complete, Scopus, Embase) were searched along with a web-based search of the eight academic institutions delivering intellectual disability nurse education in Ireland for publications indexed from the earliest available date to the 31 December 2020.Eligibility criteriaPublications by an academic, practitioner or student working in intellectual disability practice or education in Ireland relating to intellectual disability nursing, care or education.Data extraction and synthesisData pertaining to type of paper/design, authors (academic/professional/student), year, collaboration (national/international), topic/content area and title were extracted from each paper. Data were analysed by two authors using Colorafi and Evans content analysis steps where data was tabulated, and a narrative synthesis undertaken.ResultsThe reporting of the review is in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) and PRISMA extension for Scoping Reviews Checklist. Database and web-based searching resulting 245 articles meeting the criteria for this review. Through content analysis the 245 articles were mapped onto six themes: supporting inclusion, future planning, aspects of health, interventions, education, professional development and research, and personal and professional accounts of caring.ConclusionsThis review highlights the extent and nature of intellectual disability publications by academic, practitioner or student working in intellectual disability nursing in Ireland together with opportunities for future growth and development. From the findings it is apparent that there is an ongoing need for intellectual disability nurses to define their role across the full trajectory of health provision and to make visible their role in person-family centred support, inclusion, and contributions in health education, health promotion and health management.

Project description:The outbreak of COVID-19 led to restrictions on movements and activities, which presented a serious challenge to the resilience of the water sector. It is essential to understand how successfully water companies responded to this unprecedented event so effective plans can be built for future disruptive events. This study aimed to evaluate how the water sectors in the UK and Ireland were affected from a holistic sustainability and resilience-based perspective. Using pre-COVID data for 18 indicators of company performance and comparing them to the first year of the pandemic, the direction and magnitudes of change varied across companies. Financial indicators were significantly negatively affected, with interest cover ratio, post-tax return on regulated equity, and operating profit, exhibiting the greatest average declines of 21%, 21%, and 18%, respectively, a trend that would be dangerous to provisions and company operations if continued. Despite this, service and environmental indicators improved during the first year of the pandemic, exemplified by unplanned outage, risk of sewer storm flooding, and water quality compliance risk decreasing by a mean average of 37%, 32%, and 27%, respectively. Analysis using the Hicks-Moorsteen Productivity Index concluded that average productivity increased by 35%. The results suggest that the water sector was relatively resilient to the COVID-19 pandemic in terms of services, but adverse effects may have manifested in a deteriorated financial position that could exacerbate future challenges arising from exogenous pressures such as climate change. Specific advice for the UK water sector is to scrutinize non-critical spending, such as shareholder payments, during periods of economic downturn to ensure essential capital projects can be carried out. Although results are temporal and indicator selection sensitive, we recommend that policy, regulation, and corporate culture embrace frameworks that support long-term resilience to since the relative success in response to COVID-19 does not guarantee future success against differing challenges. This study generates a timely yet tentative insight into the diverse performance of the water sector during the pandemic, pertinent to the water industry, regulators, academia, and the public.

Project description:BACKGROUND:Rapid spread of coronavirus disease 2019 (COVID-19) has affected people with intellectual disability disproportionately. Existing data does not provide enough information to understand factors associated with increased deaths in those with intellectual disability. Establishing who is at high risk is important in developing prevention strategies, given risk factors or comorbidities in people with intellectual disability may be different to those in the general population. AIMS:To identify comorbidities, demographic and clinical factors of those individuals with intellectual disability who have died from COVID-19. METHOD:An observational descriptive case series looking at deaths because of COVID-19 in people with intellectual disability was conducted. Along with established risk factors observed in the general population, possible specific risk factors and comorbidities in people with intellectual disability for deaths related to COVID-19 were examined. Comparisons between mild and moderate-to-profound intellectual disability subcohorts were undertaken. RESULTS:Data on 66 deaths in individuals with intellectual disability were analysed. This group was younger (mean age 64 years) compared with the age of death in the general population because of COVID-19. High rates of moderate-to-profound intellectual disability (n = 43), epilepsy (n = 29), mental illness (n = 29), dysphagia (n = 23), Down syndrome (n = 20) and dementia (n = 15) were observed. CONCLUSIONS:This is the first study exploring associations between possible risk factors and comorbidities found in COVID-19 deaths in people with intellectual disability. Our data provides insight into possible factors for deaths in people with intellectual disability. Some of the factors varied between the mild and moderate-to-profound intellectual disability groups. This highlights an urgent need for further systemic inquiry and study of the possible cumulative impact of these factors and comorbidities given the possibility of COVID-19 resurgence.

Project description:BACKGROUND:People living in rural and remote communities commonly experience significant health disadvantages. Geographical barriers and reduced specialist and generalist services impact access to care when compared with metropolitan context. Innovative models of care have been developed for people living with chronic diseases in rural areas with the goal of overcoming these inequities. The aim of this paper was to describe the characteristics and outcomes of studies investigating innovative models of care for people living with chronic disease in rural areas of developed countries where a metropolitan comparator was included. METHODS:An integrative systematic review was undertaken. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) method was used to understand the empirical and theoretical data on clinical outcomes for people living with chronic disease in rural compared with metropolitan contexts and their models of care in Australia, New Zealand, United States, Canada and the United Kingdom. RESULTS:Literature searching revealed 620 articles published in English between 1st January 2000 and 31st March 2019. One hundred sixty were included in the review including 68 from the United States, 59 from Australia and New Zealand (5), 21 from Canada and 11 from the United Kingdom and Ireland. 53% (84) focused on cardiovascular disease; 27% (43) diabetes mellitus; 8% (12) chronic obstructive pulmonary disease; and 13% (27) chronic kidney disease. Mortality was only reported in 10% (16) of studies and only 18% (29) reported data on Indigenous populations. CONCLUSIONS:This integrated review reveals that the published literature on common chronic health issues pertaining to rural and remote populations is largely descriptive. Only a small number of publications focus on mortality and comparative health outcomes from health care models in both urban and non-urban populations. Innovative service models and telehealth are together well represented in the published literature but data on health outcomes is relatively sparse. There is significant scope for further directly comparative studies detailing the effect of service delivery models on the health outcomes of urban and rural populations. We believe that such data would further knowledge in this field and help to break the deadly synergy between increased rurality and poorer outcomes for people with chronic disease.

Project description:BackgroundCalcium ions are involved in several human cellular processes including corticogenesis, transcription, and synaptogenesis. Nevertheless, the relationship between calcium channelopathies (CCs) and intellectual disability (ID)/global developmental delay (GDD) has been poorly investigated. We hypothesised that CCs play a major role in the development of ID/GDD and that both gain- and loss-of-function variants of calcium channel genes can induce ID/GDD. As a result, we performed a systematic review to investigate the contribution of CCs, potential mechanisms underlying their involvement in ID/GDD, advancements in cell and animal models, treatments, brain anomalies in patients with CCs, and the existing gaps in the knowledge. We performed a systematic search in PubMed, Embase, ClinVar, OMIM, ClinGen, Gene Reviews, DECIPHER and LOVD databases to search for articles/records published before March 2021. The following search strategies were employed: ID and calcium channel, mental retardation and calcium channel, GDD and calcium channel, developmental delay and calcium channel.Main bodyA total of 59 reports describing 159 cases were found in PubMed, Embase, ClinVar, and LOVD databases. Variations in ten calcium channel genes including CACNA1A, CACNA1C, CACNA1I, CACNA1H, CACNA1D, CACNA2D1, CACNA2D2, CACNA1E, CACNA1F, and CACNA1G were found to be associated with ID/GDD. Most variants exhibited gain-of-function effect. Severe to profound ID/GDD was observed more for the cases with gain-of-function variants as compared to those with loss-of-function. CACNA1E, CACNA1G, CACNA1F, CACNA2D2 and CACNA1A associated with more severe phenotype. Furthermore, 157 copy number variations (CNVs) spanning calcium genes were identified in DECIPHER database. The leading genes included CACNA1C, CACNA1A, and CACNA1E. Overall, the underlying mechanisms included gain- and/ or loss-of-function, alteration in kinetics (activation, inactivation) and dominant-negative effects of truncated forms of alpha1 subunits. Forty of the identified cases featured cerebellar atrophy. We identified only a few cell and animal studies that focused on the mechanisms of ID/GDD in relation to CCs. There is a scarcity of studies on treatment options for ID/GDD both in vivo and in vitro.ConclusionOur results suggest that CCs play a major role in ID/GDD. While both gain- and loss-of-function variants are associated with ID/GDD, the mechanisms underlying their involvement need further scrutiny.