National Reference Group Research Articles

Who cares for the carers? carerhelp: development and evaluation of an online resource to support the wellbeing of those caring for family members at the end of their life

BackgroundMost people living with a terminal illness and approaching death will need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional, and practical caring supports. A significant portion of these carers can feel overwhelmed, isolated and experience psychological and/or financial distress. Carers can have unmet information needs and information needs can change across the caring period.MethodsGuided by an Australian National Reference Group, this project undertook a multiphase set of activities to enable the development of an online carer resource. These activities included a literature review of key issues and considerations for family carers supporting someone with a terminal illness, a scoping scan of existing online resources, and interviews and focus groups with eighteen carers to understand their needs and context of caring. This information formed the basis for potential digital content. A web project team was established to create the information architecture and content pathways. User testing survey and usability assessment of the CarerHelp Website was undertaken to assess/optimise functionality prior to release. An evaluation process was also devised.ResultsThe literature review identified carer needs for practical and psychological support along with better education and strategies to improve communication. The scoping scan of available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed, and disease specific. The eighteen carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement. User testing and usability assessment of the prototype resource led to changes to enhance the user experience and effectiveness of navigation. It also highlighted a lack of awareness of existing resources and the needs of marketing and communication to address this problem.ConclusionsThe project led to the development of an open access online resource, CarerHelp (www.carerhelp.com.au), for use by carers and families caring for a person who has palliative care needs. The web metrics demonstrate substantial use of the resources.

1270 DEVELOPMENT OF A COMPETENCY FRAMEWORK FOR EARLY CAREER NURSES UNDERTAKING POST-REGISTRATION EDUCATION IN CARE FOR OLDER PEOPLE

Abstract Introduction Despite recognition of the status of gerontological nursing as a speciality, there is no specific UK competency framework for early career nurses working with older people. As part of a feasibility intervention to improve recruitment and retention of nurses within the speciality (ECHO Early Careers in Healthcare of Older People and PEACH Programme for early careers for care home nurses), we developed a bespoke competency framework appropriate for nurse working within all sectors. Method The national and international literature on published competency frameworks was reviewed to identify core domains of knowledge and skill. We integrated these within a CGA model to develop a draft competency framework which we then tested for face and content validity. It was reviewed by expert practitioners and managers from NHS and care home providers, and a national reference group (British Geriatrics Society Nurse Special interest group). It was then implemented by students under taking the ECHO and PEACH programmes. A mixed-methods approach was used involving online surveys, one-to-one interviews and focus group interviews with students, mentors, ward managers and care home managers. Ethical approval was obtained from the university ethics committee. Results From an initial draft of 80 competency statements 69 were adopted across 10 domains. Thirty students across the ECHO and PEACH programmes used the framework and participated in evaluation. Our analysis found that students benefited from recognising unique gerontological knowledge, expanded insights into practice and affirmation through mentor feedback. Some students faced logistical challenges including access to mentors. The framework was found to be appropriate and acceptable across both hospital, community and care home settings. Conclusion/s The competency framework was valid in clinical gerontological settings across hospital, community and care homes, and supported knowledge and skills development and evidencing for early career nurses.

Refreshing the Perinatal Periods of Risk: A New Reference Group and Nationwide Large-County-Level Analyses.

The Perinatal Periods of Risk approach (PPOR) is designed for use by communities to assess and address the causes of high fetal-infant mortality rates using vital records data. The approach is widely used by local health departments and their community and academic partners to inform and motivate systems changes. PPOR was developed and tested in communities based on data years from 1995 to 2002. Unfortunately, a national reference group has not been published since then, primarily due to fetal death data quality limitations. This paper assesses data quality and creates a set of unbiased national reference groups using 2014-2016 national vital records data. Phase 1 and Phase 2 analytic methods were used to divide excess mortality into six components and create percentile plots to summarize the distribution of 100 large US counties for each component. Eight states with poor fetal death data quality were omitted from the reference groups to reduce bias due to missing maternal demographic information. There are large Black-White disparities among reference groups with the same age and education restrictions, and these vary by component. PPOR results vary by region, maternal demographics, and county. The magnitude of excess mortality components varies widely across US counties. New national reference groups will allow more communities to do PPOR. Percentile plots of 100 large US counties provide an additional benchmark for new communities using PPOR and help emphasize problem areas and potential solutions.

Racial Disparities Among the Physical and Mental Health of Head Start Staff

Racial disparities are known to exist in terms of health care; this paper investigated if such differences existed among Head Start staff in terms of health and wellness. The purpose of the study was to compare physical health indicators from a Louisiana HS sample to a previously published data set of Pennsylvania HS staff [4]. 
 We surveyed a predominately black (85.6%) group of HS teachers (n = 195) using a modified questionnaire developed by a Pennsylvania research team. The responses were compared to a national reference and Pennsylvania group of HS teachers [4].
 Results indicated that HS teachers have higher prevalence of health-related problems than the national sample. However, our sample of black teachers in HS start classrooms experienced worse physical health than white women with similar characteristics (age, marital status, etc.). These results have profound implications regarding health disparities as well as the physical well-being of HS teachers.

Comparing Louisana and Pennslyvania Head Start Teachers' Physical and Mental Health

Racial disparities have been found to exist within the health care setting; this paper investigates the existence of such differences among Head Start (HS) staff in terms of health and wellness. The purpose of the study was to compare physical health indicators from a Louisiana HS sample to a previously published data set of Pennsylvania HS staff (Whitaker et al., 2013). We surveyed a predominately Black (85.6%) group of HS teachers (N = 195) using a modified questionnaire developed by a Pennsylvania research team. The responses were analyzed against a national reference and Pennsylvania group of HS teachers (Whitaker et al., 2013). Results indicated that HS teachers have a higher prevalence of health-related problems than the national sample. However, our sample of Black teachers in HS start classrooms experienced worse physical health than White women with similar characteristics (age, marital status). These results have profound implications regarding health disparities and the physical well-being of HS teachers.

Exploratory attitude survey of homeless persons regarding telecare services in shelters providing mid- and long-term accommodation: The importance of trust.

BackgroundWith the expansion of digital health, it is imperative to consider intervention techniques in order not to be the cause of even more social health inequalities in underserved populations struggling with chronic diseases. Telemedicine solutions for homeless persons might compensate for shortcomings in access to valuable health services in different settings. The main aim of our research was to examine the attitudes and openness of homeless persons regarding telecare on a Hungarian sample.MethodsQuantitative survey among homeless people (n = 98) was completed in 4 shelters providing mid- and long-term accommodation in Budapest, Hungary. Attitudes regarding healthcare service accessibility and telecare were measured by a self-developed questionnaire of the research team. Telecare attitude comparison was made with data of a Hungarian weighted reference group of non-homeless persons recruited from 2 primary care units (n = 110).ResultsA significant fraction of homeless people with mid- or long-term residency in homeless shelters did not oppose the use of telecare via live online video consultation and there was no difference compared to the national reference group (averages of 3.09 vs. 3.15, respectively). Results of the homeless group indicate that those more satisfied with healthcare services, in general, manifest more openness to telecare. It is clearly demonstrated by the multivariate analysis that those participants in the homeless group who had problems getting health care in the last year definitely preferred in-person doctor-patient consultations.ConclusionDigital health technologies offer a potentially important new pathway for the prevention and treatment of chronic conditions among homeless persons. Based on the attitudes towards telecare, initiating an on-site telecare program for mid- and long-term residents of homeless shelters might enable better care continuity. Our results draw attention to the key factors including building trust in the implementation of such programs among underserved and other vulnerable patient groups.

How material deprivation impacted economic stress across European countries during the great recession. A lesson on social comparisons

The development of a common standard of consumption is one goal of the ongoing harmonization of the EU member states’ economies. As a result, the degree to which household deprivation affects people’s economic stress should converge. Based on comparison theory, such convergence could be one indicator for Europe growing together (‘Europeanization’). The association between deprivation and economic stress is tested across and between 28 EU countries with EU-SILC data. Moreover, it is examined whether this association changed between 2007 and 2015, as the great recession starting in 2008 affected European countries differently. The results show that, given a certain level of household deprivation, people judge their situation differently across Europe. Whereas economic stress levels are higher in relatively poor countries, the deprivation-stress link is stronger in rich countries. Across-time comparisons suggest no decline in the extent to which a country’s deprivation level moderated the effect of household deprivation on economic stress. The findings support the persistence of national reference groups against which individuals judge their own economic situation.

Internet opportunities and risks for adolescents with intellectual disabilities: A comparative study of parents’ perceptions

Background: In contemporary society internet and digital competencies are used to perform activities.Aim: The aim of this study is to investigate opportunities and risks of internet use as perceived by the parents of adolescents with intellectual disabilities (ID) in comparison with a national reference group of parents of adolescents.Methods: This was a cross-sectional study with group comparisons using a national survey. Analyses were carried out using Fisher’s exact test and logistic regression to control for confounding factors.Results: A significantly higher proportion of parents of adolescents with ID perceive opportunities associated with internet use and playing games, and a lower proportion perceive risks with negative consequences, compared with the reference group. Significantly more parents of adolescents with ID perceive their adolescent never use smartphones and social media compared with the reference group. Fewer parents of adolescents with ID have concerns about online risks for their adolescents compared with the reference group.Conclusion and Significance: The results provide new knowledge for occupational therapists to support positive risk-taking in internet-use for adolescents with ID, in collaboration with their parents, to enable the development of digital competencies and digital participation in everyday life in a digitalised society.

Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care

Background: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. Aim: To develop a prompt list suitable for paediatric palliative care. Design: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. Participants: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. Results: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. Conclusion: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.

Monte–Carlo simulation of wall correction factor of graphite cavity ionisation chamber

The purpose of this article is to discuss the method of determining the wall correction factor of graphite cavity ionisation chamber. The method is the ‘equal effect wall thickness’ simulation and direct calculation of the wall correction factor of the std10cm3 and std30cm3 spherical graphite cavity ionisation chamber in the national air-specific kinetic energy reference group (National Institute of Standards and Technology NIST), respectively, in the NIST10cm3 and NIST30cm3 spherical graphite cavity ionisation chamber. The calculated results are in agreement with the values released by NIST in 0.1%. Conclusions of the equivalent wall thickness simulation method and the direct calculation simulation method meet each other's requirements, which provide a new idea for the determination of wall correction factor.

Towards the development of a wellbeing model for Aboriginal and Torres Strait Islander peoples living with chronic disease

BackgroundRe-defining the way in which care is delivered, to reflect Aboriginal and Torres Strait Islander peoples’ needs and values, is essential for improving the accessibility of primary healthcare. This study focused on developing a Framework to support the quality of care and quality of life of, as well as treatment for, Aboriginal and Torres Strait Islander peoples living with chronic disease.MethodsA team of researchers, including thirteen experienced Aboriginal healthcare professionals, came together to undertake this important work. Using a Participatory Action Approach, this study actively engaged people with local knowledge to ensure that the Framework was developed by and for Aboriginal people.ResultsThe final Wellbeing Framework consists of two core values and four elements, each supported by four principles. Importantly, the Framework also includes practical examples of how the principles could be applied. National Reference Group members, including community representatives, policy makers and healthcare providers, reviewed and approved the final Framework.ConclusionThe outcome of this collaborative effort is a Framework to guide primary healthcare services to develop locally relevant, flexible approaches to care which can respond to communities’ and individuals’ varied understandings of wellbeing.

A decade of health assessments in Appalachia

PurposeThe purpose of this paper is to describe standardized clinical process of care and quality performance metrics at Roane Medical Center (RMC) and compare data from 2005 to 2015.Design/methodology/approachInformation was extracted from a nationwide sample of short-term acute care hospitals using the Hospital Quality Alliance (HQA) database, evaluating multiple parameters measured at RMC. HQA data from RMC were matched against state and national benchmarks; findings were also compared with similar reports from the same facility in 2005.FindingsInformation collected by HQA expanded substantially in ten years and queried different parameters over time, thus exact comparisons between 2005 and 2015 cannot be easily calculated. Nevertheless, analysis of process of care data for 2015 placed RMC at or above state- and national-average performance in 64.9 percent (24 of 37) and 56.5 percent (26 of 46) categories, respectively. RMC registered superior process of care scores in heart failure care, pneumonia care, thrombus prevention and care, as well as stroke care. While RMC continues to perform favorably against state and national reference groups, the differences between RMC vs state and RMC vs national averages using current reporting metrics were both statistically smaller in 2015 compared to 2005 (p<0.05).Research limitations/implicationsPerhaps the most significant interval health event for the RMC service area since 2005 was a coal ash spill at the nearby Tennessee Valley Authority facility in December 2008. Although reports on environmental and health effects following one of the largest domestic industrial toxin releases reached a number of important conclusions, the consequences for RMC in terms of potential added clinical burden on emergency services and impact on chronic health conditions have not been specifically studied. This could explain data reported on emergency department services at RMC but additional research will be needed to establish causality.Practical implicationsWhile tracking of care processes at all US hospitals will be facilitated by refinements in HQA tools, longitudinal evaluations for any specific unit will be more meaningful if the assessment instrument undergoes limited change over time.Social implicationsAppalachia remains one of several regions in the USA often identified as medically underserved. Hospitals here have confronted the challenge of diminished reimbursement, high expenses, limited staffing and other financial hardships in a variety of ways. Since the last published report on RMC, a particularly severe global recession has placed additional stress on organizations offering crucial health services in the region.Originality/valueAs a follow-up study to track potential changes which have been registered in the decade 2005-2015, this is the first report to provide original, longitudinal analysis on RMC, an institution operating in a rural and underserved area.

Vaccination Status of Pneumococcal and Other Vaccines in 444 Liver Transplant Patients Compared to a Representative Population Sample.

Studies have documented deficits of pneumococcal and other vaccinations in kidney and lung transplant patients, but the vaccination status of liver transplant (LT) recipients is unknown. This cross-sectional study investigated the prevalence of immunizations among LT patients at a large university medical center compared to a representative general population sample. In 2014, all LT patients (>18 years of age) were asked for their vaccination documents. The immunization rates for pneumococcal and other vaccine-preventable diseases were calculated. LT patients' rates for tetanus, diphtheria, and polio vaccinations were compared to a national reference group. Because these vaccinations are recommended for both groups, pneumococcal and influenza vaccination rates of LT patients were compared to those of seniors (>65 years of age) from a national sample. We found that 444 of 581 LT patients (76.4%) had evaluable vaccination documents. Only 60% of the patients received at least 1 pneumococcal vaccination. Insufficient immunization rates (≥1 vaccination/lifetime prevalence) were also documented for other vaccine-preventable diseases: hepatitis B 64%, hepatitis A 48%, tetanus 87%, diphtheria 79%, polio 72%, pertussis 38%, and seasonal influenza (the preceding season) 51%. Only 0.7% (n=3) of LT patients had received all vaccinations as recommended. Similar deficits were documented in the national sample: tetanus 96%, diphtheria 82%, polio 86%, and pertussis 35%. LT patients received pneumococcal vaccines twice as frequently compared to seniors (60% vs. 31%), while influenza vaccination rates were comparable (51% vs. 45%). In agreement with studies addressing other solid organ transplant recipients, vaccination coverage of LT patients and the general population needs to be improved.

From Registers to Repertoires of Identification in National Identity Discourses: A Comparative Study of Nationally Mixed People in France, Germany, and the United Kingdom

AbstractAs nationally mixed people have parents born in different countries, they can potentially identify with multiple national reference groups, allowing the researcher to study national identification processes. The analysis of approximately one hundred people of nationally mixed background living in France, Germany, and the United Kingdom highlights different registers of identification. There are important differences in how nationally mixed people articulate them, which leads to the identification of different national repertoires of identification. In France, a strong French national identity was emphasized, whereas German national identity seems more fragile because it depends mainly on cultural socialization. In the United Kingdom, non‐national identities are developed in a context where the national community is not clearly defined, while ethnicity is publicly recognized. The register and repertoire of identification concepts thus allow the researcher to analyse identity discourses and then explain national differences through international comparison.

G171(P) Providing psychology support in a district paediatric cardiology service

Introduction Advances in medical and surgical care have improved mortality and morbidity rates in children with congenital heart disease (CHD). It has been recognised that children with CHD and their families benefit from psychology input. In 2010 the National Reference Group for Psychologists working in Paediatric Cardiology drafted minimum standards for services to meet the psychosocial needs of these children. These were approved by the British Psychological Society, the Congenital Heart Service Standards Group and the Clinical Implementation Advisory group in 2013. Aims The study reviewed the impact of newly introduced clinical psychology service for Paediatric Cardiology patients in Cambridge. Methods Patients were identified from local paediatric and psychology databases. Children and families were referred to a Clinical Psychologist working in general paediatrics. Access to the service was initially limited the children referred were deemed to be the most complex in the Service. Results Between March 2012 and March 2014 twenty five referrals were made and 18 patients/families were seen, 2 declined input and 5 are pending. Of those seen, 10 were male and 8 female aged between 4 months and 16 years. There were 116 contacts with the psychologist. Most were offered 6 appointments, ranging from 2 to 20. The reasons for referral were for: parental anxiety/trauma (4), attachment issues (1), adjustment to a new diagnosis (4), management of neurodevelopmental concerns and school difficulties (1), behavioural difficulties (2) and emotional difficulties (6). So far, eleven Service satisfaction questionnaires have been sent to 11 families and six have been returned. All respondents valued accessing a psychologist locally rather than travelling to a specialist centre. Conclusions This study supports national and local drivers to provide high quality medical and psychological care close to child’s home from birth through to transition to adult services. There is anecdotal evidence that direct family contact with the psychologist has freed up Consultant time and improved shared care. This data together with the standards documents have been used to establish a dedicated cardiology psychology service.

Investing in Workplace Innovation Pays Off for SMEs: A Regional Innovation Initiative from the Netherlands

From 2009 to 2013 the workplace innovation project “My Enterprise 2.0” was carried out in the region of Utrecht in the Netherlands in order to strengthen the workplace innovation capability of small and medium-sized enterprises (SMEs). Participating enterprises completed a questionnaire regarding the “workplace innovativeness” of their company. A workplace innovation intervention was then implemented by some of the companies, while other companies chose not to take part. At the end of the project, a second questionnaire indicated that those companies that implemented interventions had a significantly higher score with regard to overall workplace innovativeness. The companies without such interventions reported a small decrease. While the companies in the region had higher workplace innovativeness scores relative to a national reference group both before and after the project, the increase in the “workplace innovativeness” of the regional SMEs that experienced interventions suggests that the project proved beneficial to their continued “workplace innovativeness.” Moreover, these companies also reported positive effects on company performance, achieving company goals and improving labor productivity.

When There is more than a Cleft: Psychological Adjustment When a Cleft is Associated with an Additional Condition

In spite of studies reporting a relatively high frequency of additional conditions in children with a cleft lip and/or cleft palate (CL/P), almost no research has focused on this clinically important subgroup. The objective of this study was to compare psychosocial adjustment in children with CL/P with and without an additional condition. Cross-sectional data based on routine psychological assessments at age 10 years, with comparisons to national reference groups. Centralized treatment, Norway. Two hundred five children with CL/P (participation rate: 80.1%) from three consecutive birth cohorts. The Strengths and Difficulties Questionnaire (self-report and parent report) and the Child Experience Questionnaire (self-report). Eighty-one children (39.5%) were identified as having at least one condition in addition to the cleft. These children reported significantly more psychosocial difficulties than children with a cleft alone. Differences between specific conditions were minor. Children with a cleft alone (n = 124) reported mean scores that were comparable to those reported by the reference group. There were no differences in adjustment between children with a visible versus a non-visible cleft. The present study highlights the need for research to be conducted in children with CL/P who have additional conditions to provide better knowledge and clinical care for a potentially vulnerable subgroup of children and their parents.

Material Deprivation, Economic Stress, and Reference Groups in Europe: An Analysis of EU-SILC 2009

In this paper we take advantage of the recent availability of data from the special module on material deprivation in the 2009 European Union Statistics on Income and Living Conditions (EU-SILC) to develop a more comprehensive understanding of the relationship between material deprivation and economic stress, the mediating role played by cross-national differences in levels of income and income inequality and the implications for competing perspectives on the nature of reference groups in Europe. The paper establishes the critical role of basic deprivation, relating to inability to enjoy customary standards of living, in rising economic stress levels and in mediating the impact of socio-economic conditions. National income levels and inequality had no direct influence on economic stress. However, the impact of basic deprivation was stronger in countries with higher levels of income indicating the crucial role of national reference groups. An interaction between basic deprivation and income inequality was also observed. However, contrary to the expectation that experiencing basic deprivation in a national context of high income inequality is likely to be particularly stressful, the consequences of such deprivation were most negative in low inequality countries. Experiencing basic deprivation where high income levels and lower inequality would lead to the expectation that such deprivation is eminently avoidable exacerbates its impact.

The Seventeenth- and Eighteenth-Century Sexuality Hypothesis

Until recently, we’ve thought of the modern sex/gender system and homosexual identity as sociointellectual developments of the later nineteenth century. Over the past three decades, however, evidence has accumulated suggesting that these categories coalesced much earlier—during the seventeenth and eighteenth centuries (the national reference group here is England). At the beginning of this period, the customary distinction understood male and female as superior and inferior versions of each other within a shared hierarchy. By the period’s end, this understanding was being replaced by the modern tendency to view men and women as basically different from each other, separate ways of being whose difference is crucially marked by a preference for the other sex and crucially mediated by the existence of a category of men who, on the contrary, prefer the same sex. This change was overdetermined. But its most important agent was the empirical epistemology of the scientific revolution, whose unprecedented rooting of nature in the material world biologized gender as a physiologically determinate difference rather than, as formerly conceived, a matter of relative social, political, and familial authority. Penile penetration, traditionally practiced to the express end of reproduction and otherwise only one among a range of the practices we call foreplay, came to be seen as the definitive sexual practice. The abstract category “sex” helped ground the emergent idea of personal identity in anatomical difference. And in time the word “gender” took on the additional function of denoting the culturally imposed and culturally variable modes of social being that correlate with biological sex but aren’t naturally determined by it.

Cross-cultural Aspects of Academic Discourse

This paper investigates cross-cultural aspects of academic discourse, explo ring the complex nature of its realisations. Indeed, academic discourse is not at all uni form but varies according to a host of factors, such as language com pe tence, local culture, disciplinary field, community membership, pro fes sional expertise and generic conventions. The data presented in this paper originate from a research project on Identity and Culture in Academic Discourse carried out by CERLIS, the research centre on specialised discourse based at the University of Bergamo. In this project special attention has been given to the relationship between socioculturally-oriented identity factors and textual variation in English academic discourse, focusing in particular on the identification of identity traits typical of different branches of learning. The data presented here show that the (native or non-native) Anglophone textual realisations taken into consideration are clearly influenced by their authors’ cultural allegiance to their linguistic, professional, social, or national reference groups.