Mothering and intellectual disability:partnership rhetoric?

This paper is about mothering an intellectually disabled child identified with special educational needs. It specifically looks at the parent partnership rhetoric that has dominated UK government policy and directives for nearly three decades and yet research suggests parents and more often mothers have to battle to be recognised as legitimate experts. This paper engages with sociological analysis as it highlights via qualitative narratives that mothers are weighed down by the sheer number of professionals involved in their day-to-day life. Moreover, mothers whose children are not identified in the early years are often blamed in the first instance for playing a part in their child’s difficult behaviour. This research ultimately suggests that partnership work is important and necessary for practice within health, education and social work professions, not least of all because the emotional roller-coaster that mothers experience during the assessment and statementing process is disabling.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

Disability and Participation in the Professions: Examples from Higher and Medical Education

Learners with disabilities remain under-represented in higher education and courses, such as medicine, that grant access to ‘the professions’. National and professional legislation, policy and guidance have changed over the last few decades in response to reforms in the way disability is viewed and valued by society. Principles of equal rights and equality of opportunity inform the negotiation of widened participation in the professions. However, drawing on the example of medical education, it is possible to see that widening articipation agendas may be insensitive to the needs of learners with disabilities. Analysing the development of practice and policy from a participation perspective suggests that tokenism may have played a role in deprioritising the voices of individuals with disabilities, rendering policy disconnected from the needs of marginalised groups. The concept of participatory parity may provide an opportunity to readdress this misrepresentation.

The Multi-Faceted Experience of Empathy in Intellectual Disability Settings: An IPA Study

This research thesis explored the concept of empathy. The specific purpose was to further understand the idea of empathy in relation to the experience of male support workers who provide residential care to adults with intellectual disabilities (ID) and challenging behaviour. The thesis aimed to provide some insights into how support workers develop and extract meaning from their experiences of relationships with clients and the impact of this on their own self-care, namely, self-compassion. Since personal accounts of experience were required, a qualitative methodology was employed, Interpretative Phenomenological Analysis (IPA) (Smith, 2004). This methodology was selected as it allows for the exploration and interpretation of idiographic lived experience and meaning making. 8 experienced support workers were interviewed using a semi structured interview. Four superordinate themes emerged from the data. These included: 1. Making sense of the others inner world; 2. Processes that enhance empathic practice; 3. Tensions and conflicts, and 4. Management of distressing feelings. Differing accounts of interpreting the needs of clients were identified which helped participants understand, make sense of their interpersonal experience and participate in their role. These included utilising academic knowledge and senses, particularly sight and hearing, which were seemingly complemented by a level of reflective practice. Additionally, to make sense of the experience of a client, they appeared to put themselves in their position, suggesting a form of empathy. Participants appeared to engage in a process of reflection on their relationships with clients, which helped them think about what they had learned about the person’s needs, moreover, this process enabled them to identify some of their own responses and feelings. However, participants seemed to struggle to recognise the occurrence or impact of distressing emotional experience and to express their feelings, possibly in response to a deep sense of responsibility and fear of transferring emotional distress to others. This dilemma of holding two potentially conflicting views of experience seemed to inhibit self-compassion. Although not specifically testing theories of empathy, from the overall findings, it could be suggested that empathy may be a dynamic, transient process that is influenced by reflexivity, values and context. The context in which participants discussed their practice, and situated within their accounts, suggested a sense of confusion and uncertainty. Consequently, it is suggested this impacted on how participants understood and related to clients, and to themselves. There were some specific implications for Counselling Psychology practice, mostly concerning training and supervision. These included recommendations for staff training and supervision, systemic organisational intervention, policy development, recommendations for revisions to models of specialist care frameworks and clinical training.

Promoting oral health in adults with learning disability

Introduction: It is complex to define learning disabilities, there is no single universal definition used; there are different interpretations and definitions used for learning disabilities in different countries and communities. Primarily, the term “learning disability” sometimes used as “learning difficulties” is a term widely used in UK. There are various types and degree of severity of learning disabilities depending upon the extent of disorder. Though different definitions used all over the world, its types and classification coupled with their health and oral health needs are discussed in this review. Objectives:  To review the background literature on definitions of learning disabilities and health needs of this population.  To review literature on individual clinical preventive intervention to determine the effectiveness in promoting oral health amongst adults in learning disabilities.  To review literature in relation to community based preventive dental measures.  To determine the interventions in this areas are appropriate to support policy and practice and if these interventions establish good evidence to suggest that the oral health needs of adults with learning disabilities are met or not.  To make recommendations in implementing future preventive oral health interventions for adults with learning disabilities. Methodology: It was develop a comprehensive narrative synthesis of previously published literature from different sources and summarizes the whole research in a particular area identifying gap of knowledge. It provides a broad perspective of a subject and supports continuing education. It also is directed to inform policy and further research. It is a qualitative type of research with a broad question and critical analysis of literature published in books, article and journals. The research question evaluated on PICOS criteria is: Effectiveness of preventive dental interventions in adults with learning disabilities. The research question clearly defines the PICOS i.e. participants, interventions, comparison, outcome and study design. The Cochrane database of systematic reviews (CDSR), Database of Abstracts of Reviews of effects (DARE) through York University and National institute of Health and Clinical Excellence (NICE) was searched to identify need of this review. There was no literature review found on the preventive dental interventions found hence, justifying this review. The guidance used in this review is from York University and methods opted for search of literature is based on the following: Type of participants, interventions, outcome measure, studies and search. The review of literature; author search; systematic and narrative reviews, through the following electronic databases via UFP library services: Pub-Med, Medline, EMBASE, CINHAL, Google scholar; Science Direct; Social and Medicine. A comprehensive search of all available literature from 1990-2015, including systematic reviews, policy documents and some guideline documents was done. Internet resource used to access; Department of Health, World Health Organization, Disability World, Disability Rights Commission, the Stationery office, MENCAP, Australian Learning Disability Association. The literature search was carried out with single word, combined words and phrases, authors' names and the title of literature search. Results: It is primarily looking at the oral health interventions available for adults with learning disabilities in clinical settings and the community measures observed over a period of 25 years 1990-2015. There were 7of the clinical intervention studies and one community based intervention study was added in this review. Conclusion: There is a gap of knowledge identified in not having ample research in the area of preventive dental interventions in adults with learning or intellectual disabilities and there is a need of more research, studies need to be of a better quality and a special consideration is required in the community settings where maintenance of oral hygiene for this vulnerable group of society is hugely dependent on their caregivers. Though, the policy and guideline directs on the preventive dental interventions of adults with LD there still a gap evident in understanding and implication of the guidance in practice by the dental and care support team. Understanding learning disabilities and to identify their behavior, compliance and oral health needs is paramount for all professionals working with or for them at each level.

Interaction Between Fiscal And Monetary Policy In A Dynamic Nonlinear Model.

The objective of this study is to verify the dynamics between fiscal policy, measured by public debt, and monetary policy, measured by a reaction function of a central bank. Changes in monetary policies due to deviations from their targets always generate fiscal impacts. We examine two policy reaction functions: the first related to inflation targets and the second related to economic growth targets. We find that the condition for stable equilibrium is more restrictive in the first case than in the second. We then apply our simulation model to Brazil and United Kingdom and find that the equilibrium is unstable in the Brazilian case but stable in the UK case.

Hegemonia e contra-hegemonia na construção de políticas de esporte e lazer : a experiência do Consórcio Brasília = Hegemony and counter-hegemony in the process of sport and leisure policy-making : the experience of the Consortium Brasilia

Universidade Estadual de Campinas . Faculdade de Educação Física

Desporto adaptado no Brasil : origem, institucionalização e atualidade

Universidade Estadual de Campinas. Faculdade de Educação Física

Brazilian foreign policy: Old and new paths as regards institutional aspects, multilateralism and foreign policy towards the South

This paper emphasizes the important changes in Brazilian foreign policy after Luiz Inacio Lula da Silva took tip the power in 2002. The paper defends the idea that it is not possible to argue that there were deep changes in comparison to Cardoso's administration. However, evidence shows that new things are happening as regards the design of a more active and clear foreign action line which led to institutional changes and to more incisive multilateral paths. This results both from the political profile of the direct operators of foreign policy and the aims of lite presidential diplomacy, The hypothesis dealt with on this paper consists on the fact that Lula's administration has not fully broken with the old administration practices, however the aims of global and regional integration are being plotted more clearly and with a higher degree of activism. This becomes clear in three aspects of the Brazilian foreign policy: the institutional framework, the practice of multilateralism and the foreign policy towards the South, the three topics analyzed in this paper.

Cross-national epidemiology of DSM-IV major depressive episode

Background: Major depression is one of the leading causes of disability worldwide, yet epidemiologic data are not available for many countries, particularly low- to middle-income countries. In this paper, we present data on the prevalence, impairment and demographic correlates of depression from 18 high and low-to middle-income countries in the World Mental Health Survey Initiative. Methods: Major depressive episodes (MDE) as defined by the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DMS-IV) were evaluated in face-to-face interviews using the World Health Organization Composite International Diagnostic Interview (CIDI). Data from 18 countries were analyzed in this report (n = 89,037). All countries surveyed representative, population-based samples of adults. Results: The average lifetime and 12-month prevalence estimates of DSM-IV MDE were 14.6% and 5.5% in the ten high-income and 11.1% and 5.9% in the eight low- to middle-income countries. The average age of onset ascertained retrospectively was 25.7 in the high-income and 24.0 in low- to middle-income countries. Functional impairment was associated with recency of MDE. The female: male ratio was about 2: 1. In high-income countries, younger age was associated with higher 12-month prevalence; by contrast, in several low-to middle-income countries, older age was associated with greater likelihood of MDE. The strongest demographic correlate in high-income countries was being separated from a partner, and in low- to middle-income countries, was being divorced or widowed. Conclusions: MDE is a significant public-health concern across all regions of the world and is strongly linked to social conditions. Future research is needed to investigate the combination of demographic risk factors that are most strongly associated with MDE in the specific countries included in the WMH.

Cost risk benefit analysis to support chemoprophylaxis policy for travellers to malaria endemic countries

Background: In a number of malaria endemic regions, tourists and travellers face a declining risk of travel associated malaria, in part due to successful malaria control. Many millions of visitors to these regions are recommended, via national and international policy, to use chemoprophylaxis which has a well recognized morbidity profile. To evaluate whether current malaria chemo-prophylactic policy for travellers is cost effective when adjusted for endemic transmission risk and duration of exposure. a framework, based on partial cost-benefit analysis was used Methods: Using a three component model combining a probability component, a cost component and a malaria risk component, the study estimated health costs avoided through use of chemoprophylaxis and costs of disease prevention (including adverse events and pre-travel advice for visits to five popular high and low malaria endemic regions) and malaria transmission risk using imported malaria cases and numbers of travellers to malarious countries. By calculating the minimal threshold malaria risk below which the economic costs of chemoprophylaxis are greater than the avoided health costs we were able to identify the point at which chemoprophylaxis would be economically rational. Results: The threshold incidence at which malaria chemoprophylaxis policy becomes cost effective for UK travellers is an accumulated risk of 1.13% assuming a given set of cost parameters. The period a travellers need to remain exposed to achieve this accumulated risk varied from 30 to more than 365 days, depending on the regions intensity of malaria transmission. Conclusions: The cost-benefit analysis identified that chemoprophylaxis use was not a cost-effective policy for travellers to Thailand or the Amazon region of Brazil, but was cost-effective for travel to West Africa and for those staying longer than 45 days in India and Indonesia.

Work disability remains a major problem in rheumatoid arthritis in the 2000s: data from 32 countries in the QUEST-RA Study

Introduction: Work disability is a major consequence of rheumatoid arthritis (RA), associated not only with traditional disease activity variables, but also more significantly with demographic, functional, occupational, and societal variables. Recent reports suggest that the use of biologic agents offers potential for reduced work disability rates, but the conclusions are based on surrogate disease activity measures derived from studies primarily from Western countries. Methods: The Quantitative Standard Monitoring of Patients with RA (QUEST-RA) multinational database of 8,039 patients in 86 sites in 32 countries, 16 with high gross domestic product (GDP) (>24K US dollars (USD) per capita) and 16 low-GDP countries (<11K USD), was analyzed for work and disability status at onset and over the course of RA and clinical status of patients who continued working or had stopped working in high-GDP versus low-GDP countries according to all RA Core Data Set measures. Associations of work disability status with RA Core Data Set variables and indices were analyzed using descriptive statistics and regression analyses. Results: At the time of first symptoms, 86% of men (range 57%-100% among countries) and 64% (19%-87%) of women <65 years were working. More than one third (37%) of these patients reported subsequent work disability because of RA. Among 1,756 patients whose symptoms had begun during the 2000s, the probabilities of continuing to work were 80% (95% confidence interval (CI) 78%-82%) at 2 years and 68% (95% CI 65%-71%) at 5 years, with similar patterns in high-GDP and low-GDP countries. Patients who continued working versus stopped working had significantly better clinical status for all clinical status measures and patient self-report scores, with similar patterns in high-GDP and low-GDP countries. However, patients who had stopped working in high-GDP countries had better clinical status than patients who continued working in low-GDP countries. The most significant identifier of work disability in all subgroups was Health Assessment Questionnaire (HAQ) functional disability score. Conclusions: Work disability rates remain high among people with RA during this millennium. In low-GDP countries, people remain working with high levels of disability and disease activity. Cultural and economic differences between societies affect work disability as an outcome measure for RA.

Psychometric properties of the Child Health Assessment Questionnaire (CHAQ) applied to children and adolescents with cerebral palsy

Background: Cerebral palsy (CP) patients have motor limitations that can affect functionality and abilities for activities of daily living (ADL). Health related quality of life and health status instruments validated to be applied to these patients do not directly approach the concepts of functionality or ADL. The Child Health Assessment Questionnaire (CHAQ) seems to be a good instrument to approach this dimension, but it was never used for CP patients. The purpose of the study was to verify the psychometric properties of CHAQ applied to children and adolescents with CP. Methods: Parents or guardians of children and adolescents with CP, aged 5 to 18 years, answered the CHAQ. A healthy group of 314 children and adolescents was recruited during the validation of the CHAQ Brazilian-version. Data quality, reliability and validity were studied. The motor function was evaluated by the Gross Motor Function Measure (GMFM). Results: Ninety-six parents/guardians answered the questionnaire. The age of the patients ranged from 5 to 17.9 years (average: 9.3). The rate of missing data was low(< 9.3%). The floor effect was observed in two domains, being higher only in the visual analogue scales (<= 35.5%). The ceiling effect was significant in all domains and particularly high in patients with quadriplegia (81.8 to 90.9%) and extrapyramidal (45.4 to 91.0%). The Cronbach alpha coefficient ranged from 0.85 to 0.95. The validity was appropriate: for the discriminant validity the correlation of the disability index with the visual analogue scales was not significant; for the convergent validity CHAQ disability index had a strong correlation with the GMFM (0.77); for the divergent validity there was no correlation between GMFM and the pain and overall evaluation scales; for the criterion validity GMFM as well as CHAQ detected differences in the scores among the clinical type of CP (p < 0.01); for the construct validity, the patients' disability index score (mean: 2.16; SD: 0.72) was higher than the healthy group ( mean: 0.12; SD: 0.23)(p < 0.01). Conclusion: CHAQ reliability and validity were adequate to this population. However, further studies are necessary to verify the influence of the ceiling effect on the responsiveness of the instrument.

The contribution of self-efficacy and depression to disability and work status in chronic pain patients: A comparison between Australian and Brazilian samples

There is evidence that cognitions (beliefs) and mood contribute to physical disability and work status in people with chronic pain. However, most of the current evidence comes from North America and Europe. This study examined the contribution of demographic, pain and psychosocial factors to disability and work status in chronic pain patients in two matched samples from quite different countries (Australia and Brazil). Data were collected from 311 chronic pain patients in each country. The results suggest that although demographic and pain variables (especially pain levels) contribute disability, self-efficacy beliefs made a significant contribution to disability in both samples. Age and educational level also contributed to unemployment in both samples. But there were some differences, with self-efficacy and physical disability contributing to work status only in the Brazilian sample. In contrast, depression was the only psychological risk factor for unemployment in the Australian sample. Catastrophising and pain acceptance did not contribute to disability or unemployment in either sample. These findings confirm key aspects of biopsychosocial models of pain in two culturally and linguistically different chronic pain samples from different countries. They suggest that different chronic pain populations may share more similarities than differences. (C) 2008 European Federation of Chapters of the International Association for the Study of Pain. Published