The Global Intellectual Disability Nursing Research Collaboratory: Forming an international transformational nursing network.

AIM: This paper explains how we created the Global Intellectual Disability Nurse Research Collaboratory (GIDNRC), a transformative network. The GIDNRC aims to make improvements in the understanding, research, policy, clinical care, and support provided to people with an intellectual disability. BACKGROUND: In 2022, the World Health Organization (WHO) called upon healthcare leaders internationally to take actions to promote more equal healthcare for disabled persons. This paper promotes the GIDNRC as a way for professionals to work together to make more equal healthcare throughout the world for people with intellectual disabilities. SOURCES OF EVIDENCE: We created this paper by reviewing peer-reviewed literature and research, international policies, and nursing networking initiatives. DISCUSSION: This paper explores current policy, research, and practice issues that formed the basis of beginning the GIDNRC, including how the COVID-19 pandemic changed care. CONCLUSION: Nurses are over 50% of the world's health workforce. Therefore, they have the potential to make a large impact in making care for people with intellectual disability much more equal than currently exists throughout the world. However, barriers exist. Forming the GIDNRC, as well as using the World Wide Web, offers an opportunity to address barriers to this goal. IMPLICATIONS FOR NURSING PRACTICE: Nurses can address the needs of people with intellectual disability in their daily nursing practice. The GIDNRC aims to strengthen these clinical skills, understand how care may vary throughout the world, and share knowledge, good practices, and new ways to approach care for people with an intellectual disability worldwide. IMPLICATIONS FOR NURSING POLICY: International nursing policy should actively focus on the needs of people with intellectual disabilities and the role nurses play in addressing these health needs. The GIDNRC may provide an important way to achieve developments in this policy.

Keep My Teeth: An evaluation of multi-disciplinary training in mouth care for people with intellectual developmental disorders.

AIM: To evaluate a modular didactic training intervention called Keep My Teeth designed by special care dentists, for a range of healthcare students to provide oral homecare for people with intellectual developmental disorders (PwIDD). METHODS: To evaluate the intervention a one-group pre-test post-test pre-experimental research design was utilized. The intervention was delivered by virtual platforms or face-to-face, with a sub-sample of participants also receiving practical training. Healthcare students included Speech and Language Therapy (SLT), Registered Nurse Intellectual Disability (RNID), Dental Science (DS), Dental Nursing (DN), and Dental Hygiene (DH). RESULTS: Sixty-three of the 147 trainees completed all surveys. A significant change in perspective on barriers was seen for most groups post-training, with an increase in confidence in delivering oral care to PwIDD across disciplines; 67% of DH/DN students who took part in the practical training felt that the didactic training was just as effective without the practical training, while 42% of the DS students felt that was true. CONCLUSIONS: The training interventions provided seem to have increased the awareness of study participants in relation to barriers to care, and increased their self-efficacy towards, and intention to perform, oral homecare behaviors.

Supporting the needs of people with intellectual and developmental disabilities 1 year into the COVID-19 pandemic: An international, mixed methods study of nurses' perspectives.

As the largest public health crisis within a century, the COVID-19 pandemic has caused long-term disruption in the support systems of people with intellectual and developmental disabilities (IDD) across the globe. The purpose of this study was to investigate challenges and ameliorative strategies to supporting the basic care needs of people with IDD 1 year into the pandemic, as experienced by nurses who specialize in IDD nursing. We surveyed a convenience sample of 369 nurses from across North America, Europe, and Australasia using a 52-item online questionnaire. Descriptive statistics were used to rank the greatest challenges and the degree of support available to nurses, and manifest content analysis was used to analyze open-ended responses related to ongoing challenges and ameliorative strategies. Results of descriptive analyses revealed consistent findings across global regions in terms of the challenges faced by nurses; the greatest challenges related to supporting or enabling socialization with family/friends, ensuring adequate day programming or educational services, identifying/planning alternative entertainment activities, ensuring adequate staffing of familiar support workers and caregivers, and managing challenging behaviors related to change in daily routine and activities. Nurses described a considerable degree of support offered by their organizations in terms of flexibility in scheduling related to family obligations and paid time off for COVID-19-related isolation and quarantine. Content analysis of open-ended survey responses revealed numerous challenges related to: (1) client socialization, meaningful activity, and mental/behavioral health; (2) interpreting, keeping up with, and helping others to understand COVID-19 guidelines; (3) access to, quality of, and continuity of care; and (4) COVID-19 fatigue and the influence of time. Overall, our study highlights ongoing issues with access to care and support, exacerbated by the pandemic, and the importance of having meaningful activity and socialization for overall well-being of people with IDD during a long-term public health crisis.

Late gadolinium enhancement is common in patients with hypertrophic cardiomyopathy and no clinical risk factors for sudden cardiac death: A single center experience.

BACKGROUND: Cardiac magnetic resonance (CMR) is used in the diagnosis and risk stratification of hypertrophic cardiomyopathy (HCM) and can detect myocardial replacement fibrosis (anindependent predictor of adverse cardiac outcomes) using late gadolinium enhancement (LGE). METHODS: We retrospectively analysed CMR studies carried out over a 2 year period identifying those which were diagnostic of HCM. 117 cases were analysed. Mean age of subjects was 53 years and 78 (67%) were male. Mean ejection fraction (EF) was 68.3% with a mean left ventricular (LV) mass index of 89.4 g/m². Hypertrophy was predominantly asymmetric in 94 (80%). RESULTS: All subjects received gadolinium and 80 (68%) had evidence of LGE. LVEF was lower (67 vs. 71%; p = 0.015) and LV mass index higher (94 vs. 81 g/m²; p = 0.007) in the LGE group. The proportion of patients with at least 1 clinical risk factor for sudden cardiac death (SCD) was similar in groups with and without LGE (48% vs. 32%; p = 0.160). In this study, a significant proportion (62%) of patients without clinical risk factors for SCD were found to have LGE on CMR. These patients would not currently be considered for therapy with an implantable cardiac defibrillator. CONCLUSIONS: 1. Patients with HCM are at increased risk of SCD, but identifying patients who may benefit from implantable defibrillators is difficult. 2. LGE is associated with adverse cardiovascular outcomes in HCM, but is present in a large proportion of patients. 3. Many patients without clinical risk factors for SCD have LGE and would not currently be considered for an implantable cardiac device.

The role of the public health nurse in a changing society.

AIM: This study is a report of a study to clarify the role of the public health nurse in one Irish community care area in the light of acknowledged problems in defining boundaries of the role. BACKGROUND: Demographic developments and planned reorientation towards primary care of the health service in Ireland have changed the workload of public health nurses, which is unique compared with other countries. However, there is a lack of clarity and consequent problems in defining the role of the Irish public health nurse. METHOD: A descriptive qualitative study was conducted with 25 representatives of community nursing from one county in Ireland with a population of 209,077 and a complement of 65 full-time equivalent public health nurses. Purposive sampling was used and 21 public health nurses, two registered general nurses, one assistant director and one school nurse participated. Tape-recorded, individual semi-structured interviews were conducted over a 15-month period from 2002 to 2004. The constant comparative method was used for analysis. FINDINGS: Four themes emerged: 'Jack of all trades: the role of the public health nurse defined and described', 'the essence of the role', 'challenges to the role of the public health nurse' and 'communication'. The first theme is discussed in this paper. CONCLUSION: Public health nurses need to define and redesign their role so that they no longer think that they are the catch-all service in the community. This will enable them to deal with the rapid demographic, sociological and cultural changes in the population, a change that has international resonance.

Reliability and validity of the CCNCS: a dependency workload measurement system.

AIM: To refine, test and evaluate the Community Client Need Classification System (CCNCS). BACKGROUND: Workload assessment in community nursing is complicated by the range of services that may be delivered in one patient interaction. The CCNCS is a workload measurement system designed to capture the direct and indirect elements of community nursing work and is suitable for use with all care groups in the community. DESIGN: Survey. METHOD: Forty-four community nurses implemented the CCNCS with all clients in their caseload for four weeks. Community nursing in the Irish Republic is known as public health nursing. The Public Health Nurses (PHNs) recorded the total time in minutes that was spent on each client each week. The satisfaction with and experiences of PHNs using the CCNCS during the study period was also recorded. RESULTS: Participants endorsed the utility of the CCNCS for use in community nursing. Inter-rater and intra-rater reliability results were positive with high level of agreement between raters in relation to scoring community clients. The amount of time the PHNs spent with clients correlated with ascending level of client need. CONCLUSIONS: The CCNCS affords insight into the complex nature of community nursing. It discriminates between levels of need and has potential to provide a standardised assessment of need in all community-nursing clients. Adequate resources are required to conduct further testing of the reliability and predictive validity of this system. RELEVANCE TO CLINICAL PRACTICE: The CCNCS can provide objective evidence of community nursing workload and thus facilitate workforce planning.

Genetic variants of complement factor H gene are not associated with premature coronary heart disease: a family-based study in the Irish population.

BACKGROUND: The complement factor H (CFH) gene has been recently confirmed to play an essential role in the development of age-related macular degeneration (AMD). There are conflicting reports of its role in coronary heart disease. This study was designed to investigate if, using a family-based approach, there was an association between genetic variants of the CFH gene and risk of early-onset coronary heart disease. METHODS: We evaluated 6 SNPs and 5 common haplotypes in the CFH gene amongst 1494 individuals in 580 Irish families with at least one member prematurely affected with coronary heart disease. Genotypes were determined by multiplex SNaPshot technology. RESULTS: Using the TDT/S-TDT test, we did not find an association between any of the individual SNPs or any of the 5 haplotypes and early-onset coronary heart disease. CONCLUSION: In this family-based study, we found no association between the CFH gene and early-onset coronary heart disease.

Assessment of dependency levels of older people in the community and measurement of nursing workload.

AIM: This paper is a report of a study to explore the relationship between the dependency levels of older people who are part of the community nurse's caseload and the volume and nature of nursing input required. BACKGROUND: International healthcare policy has consistently emphasized the reorientation of health services from hospital to community care. It is necessary to determine ways to use nursing resources appropriately to meet service needs of an increasing older population. METHOD: This quantitative study was conducted in one region of Ireland, which included a city and sparsely populated rural areas. Over a 4-week period in 2004, a volunteer sample of 44 nurses assessed all older people (1482) on their community caseload using the Community Client Need Classification System. In addition, participants recorded the amount of care time spent with each individual client by all members of the community nursing team. FINDINGS: The vast majority of clients were seen in their own homes (85%, n = 1259). On the 5-point Community Client Need Classification System, the majority (39%, n = 571) were assessed at level 2 (low level of need) and 4% (n = 61) at level 5 (high level of need). As client need level increased, the consumption of community nursing time also increased. CONCLUSION: The tool was successful in discriminating between care needs levels of older people and may be useful in predicting the type and amount of human resources required by individuals who need community nursing services. Lack of information on demographic variables may limit the transferability of these findings.

Cardiovascular disease risk profiles among 'healthy' siblings of patients with early-onset cardiovascular disease: application of the new SCORE system.

BACKGROUND: Cardiovascular disease (CVD) occurs more frequently in individuals with a family history of premature CVD. Within families the demographics of CVD are poorly described. DESIGN: We examined the risk estimation based on the Systematic Coronary Risk Evaluation (SCORE) system and the Joint British Guidelines (JBG) for older unaffected siblings of patients with premature CVD (onset

Measuring the workload of community nurses in Ireland: a review of workload measurement systems.

BACKGROUND: The primary community nursing service in Ireland is public health nursing and this unique healthcare role incorporates activities and responsibilities undertaken by a variety of health professionals in other countries. Capturing and comparing a measure of the work of any community nurse is complicated due to the difficulty in standardizing the nature of community nursing across care settings. AIM: The aim of this paper was to review the varied approaches to measuring the workload/caseload of community nurses to evaluate how they may be applied to measure the workload of the public health nurse in the Irish Republic. CONCLUSION: Many of the systems designed to measure nursing workload are reliant on measuring tasks and fail to capture the less tangible but core aspects of the public health nursing role like decision-making, assessment and case management. IMPLICATIONS: There is a need to develop a workload measurement system for use by public health nurses in Ireland that is capable of measuring the uniqueness of the role.

A critical analysis of the potential contribution of Orem's (2001) self-care deficit nursing theory to contemporary coronary care nursing practice.

BACKGROUND: Over the last three decades, nurse theorists have strongly advocated the use of conceptual models of nursing to guide nursing practice. Within coronary care units, conceptual model-based care has had inconsistent application and is currently challenged by contemporary approaches such as pathways of care. AIMS: This paper aims to critically analyze the use of Orem's self-care deficit nursing theory as a modus operandi to effectively meet the needs of hospitalized patients in coronary care. RESULTS: Although complex both in the language and construction, the self-care model , provides a comprehensive and holistic approach to the care of people in coronary care. CONCLUSIONS: This paper highlights the potential contribution the application of the self-care deficit nursing theory to the coronary care setting from a philosophical and practical perspective. Orem's conceptual model of nursing and current practice in coronary care units share certain similarities that render a useful model for use in practice. However, while it is recommended for consideration for use in both practice and educational settings, further empirical work is required in the area, together with realistic and practical application of the theory to practice in a way that embraces contemporary notions.

The Community Client Need Classification System - a dependency system for community nurses.

AIM: The aim of this paper was to discuss the predictive validity and reliability of the Community Client Need Classification System (CCNCS), the results of using this tool and public health nurses' satisfaction with the system. BACKGROUND: Public health nurses provide the majority of community nursing services in Ireland. The traditional method of measuring workload in the community is based on recording the number of visits. The revised Easley-Storfjell instrument for Caseload/Workload Analysis was modified for the Irish context and permission from the authors was sought to use it in this study and was thus named the CCNCS. METHODS: A convenience sample of 29 public health nurses used the CCNCS to classify 1352 clients for 2 weeks. RESULTS: The elderly and child health groups accounted for the majority of the nurses' direct and indirect time. Predictive validity analysis demonstrated a positive relationship between needs level and nursing time. Nurses reported that the CCNCS was useful in predicting the needs of new and existing clients. CONCLUSIONS: This classification system, albeit in the first draft of its revised form, was perceived by the chosen sample of public health nurses as useful in measuring their workload. Further research is required to ascertain the reliability of the modified classification system with a larger sample size.

Lack of MEF2A Delta7aa mutation in Irish families with early onset ischaemic heart disease, a family based study.

BACKGROUND: Ischaemic heart disease (IHD) is a complex disease due to the combination of environmental and genetic factors. Mutations in the MEF2A gene have recently been reported in patients with IHD. In particular, a 21 base pair deletion (Delta7aa) in the MEF2A gene was identified in a family with an autosomal dominant pattern of inheritance of IHD. We investigated this region of the MEF2A gene using an Irish family-based study, where affected individuals had early-onset IHD. METHODS: A total of 1494 individuals from 580 families were included (800 discordant sib-pairs and 64 parent-child trios). The Delta7aa region of the MEF2A gene was investigated based on amplicon size. RESULTS: The Delta7aa mutation was not detected in any individual. Variation in the number of CAG (glutamate) and CCG (proline) residues was detected in a nearby region. However, this was not found to be associated with IHD. CONCLUSION: The Delta7aa mutation was not detected in any individual within the study population and is unlikely to play a significant role in the development of IHD in Ireland. Using family-based tests of association the number of tri-nucleotide repeats in a nearby region of the MEF2A gene was not associated with IHD in our study group.

Progressively increasing operative risk among patients referred for coronary artery bypass surgery.

OBJECTIVE: Advances in surgical, anaesthetic and percutaneous interventional techniques may have led to higher risk patients being referred for coronary artery bypass graft surgery (CABG). The purpose of this study was to compare the predicted mortality risk (EuroSCORE) of a contemporary cohort of patients referred for isolated elective CABG (2002) with that of a cohort referred five years previously (1997) and to examine temporal trends in patient demographics. METHODS: Records (n=2873) of weekly cardiac surgical referral meetings were examined and the age, sex, type of operation and surgical decision for every patient referred from 1997 to 2002 inclusive were recorded. Furthermore samples of patients referred in 1997 (n=111) and in 2002 (n=110) were chosen, and a complete EuroSCORE was calculated for each patient and compared between groups. RESULTS: In both 1997 and 2002 the median EuroSCORE among patients not accepted for surgery was significantly higher than those accepted (1997; 3 vs 2, p < 0.001. 2002; 5 vs. 2, p < 0.001). The median EuroSCORE of patients referred in 2002 was significantly higher than those referred in 1997 (3 vs. 2; p < 0.001). There was a progressive increase in median patient age throughout the study period and this accounted for the observed temporal increase in EuroSCORE. CONCLUSIONS: Predicted mortality risk among patients referred for coronary artery bypass surgery is increasing, mainly due to patient age at referral.

Family-based association studies of lipid gene polymorphisms in coronary artery disease.

Dysfunction of lipid-metabolizing proteins is implicated in the pathogenesis of coronary artery disease. Single nucleotide polymorphisms in genes that encode sterol regulatory binding protein-1a, adenosine triphosphate binding cassette-A1, hepatic lipase, lipoprotein lipase, and cholesteryl ester transfer protein were assessed as potential markers of disease susceptibility in a family-based study of 1,012 patients from 386 families. Association between single nucleotide polymorphisms and coronary artery disease was tested by the combined transmission disequilibrium test/sib transmission disequilibrium test and pedigree disequilibrium test. After Bonferroni's correction, the pedigree disequilibrium test demonstrated significant excess transmission (p <0.0083) to affected patients of the hepatic lipase -514 T allele, which suggests that this may constitute a novel disease-susceptibility locus.

Acute onset dysphagia associated with an intramural oesophageal haematoma in acquired haemophilia.

A 78-year-old man presented with a 5-day history of epistaxis and spontaneous bruising, and a 2-day history of acute dysphagia. Barium swallow, computerized tomography scan of the chest and upper gastrointestinal endoscopy were suggestive of an upper oesophageal tumour, although biopsies failed to confirm this. Investigations including a raised activated partial thromboplastin time led to the detection of an inhibitor causing functional factor VIII deficiency. Following treatment with intravenous human immunoglobulin, oral prednisolone and oral cyclophosphamide, the patient's dysphagia resolved. There was a resolution of the findings seen at the initial endoscopy and on computerized tomography scan of the chest, consistent with an oesophageal haematoma. Follow-up endoscopy failed to detect recurrence or an aetiological factor.