Intellectual Disabilities In Europe Research Articles

Dying with disability: a disability and palliative care intersectoral partnership framework

People with intellectual disabilities have poor end-of-life experiences compared with other community members. Few strategies are in place to ensure they receive end-of-life care tailored to their specific needs. More is known about “what” constitutes quality end-of-life care for people with intellectual disabilities, and the barriers to achieving these outcomes, than “how” to overcome these barriers. The expertise of both the palliative care and disability sectors are needed, at national, state, regional, and local levels, to address the causes that result in poor end-of-life experiences for people with intellectual disabilities, their families, and carers. This study developed an intersectoral disability and palliative care policy and practice partnership framework using a modified Delphi approach to integrate the key findings of two studies that provided guidance on what good end-of-life care looks like for people with intellectual disabilities: the Disability Healthy End of Life Program service model with the European Association of Palliative Care Consensus Norms for Palliative Care of People with Intellectual Disabilities in Europe. The intersectoral framework developed from this study is solution-focused and addresses the challenges of achieving quality practice.

Outcome of 10 years of ear and hearing screening in people with intellectual disability in Europe: A multicentre study.

Undetected ear and hearing problems negatively impact the quality of life of people with intellectual disability. This multicentre retrospective study describes the outcome of 10 years of ear and hearing screening in athletes with intellectual disability in seven European countries. The screening was conducted by a trained team using a strictly standardised protocol. Of 15,363 screened athletes with intellectual disability, more than half (58.7%) needed referral for ear and/or hearing problems, ranging from 51.7% (<20 years old) to 81.4% (≥60 years old). The most commonly detected conditions were excessive/impacted earwax (40.3%), middle ear problems (30.1%) and hearing loss (27.0%), with significant differences between age groups and countries. This study demonstrates an increased risk of ear and hearing problems in people with intellectual disability as compared to the general population. Considering the unawareness and impact of these problems, it is highly recommended to organise systematic screening. Follow-up for diagnostic elaboration, therapeutic management and long-term guidance should be provided.

Obesity in youth and adults with intellectual disability in Europe and Eurasia.

Information about obesity among people with intellectual disability comes mostly from small-scale, national samples in high-income countries. There are limited data from transnational studies. BMI scores had been obtained for over 25,000 youth and adults with intellectual disabilities drawn from 60 European and Eurasian countries. Their height and weight had been measured using standardized procedures when they attended Special Olympics Healthy Athletes events. Binary logistic regression identified higher levels of obesity for athletes living in high-income countries, and for adult females, for those aged 30years and over, and also for youth aged 8-13years. Participation in sports does not appear to have protected these athletes from obesity. Arguably, this remains the most pressing health issue for people with intellectual disability, particularly in Western Europe.

Special edition: mental health and intellectual disabilities in Europe

Special edition: mental health and intellectual disabilities in Europe

Prevalence of psychological distress among parents of children with intellectual disabilities in Malawi

BackgroundChildren with intellectual disabilities are common and are increasing in number as more children survive globally. In stark contrast to the 1–3% prevalence of intellectual disability in children globally (reported by WHO), studies from Malawi provide alarmingly high rates (26%). We know that the prevalence of psychological distress is as high as 50% in parents of children with intellectual disabilities in Europe and the US. No such studies have yet been conducted in Africa. This study is aimed at determining the prevalence and risk factors for psychological distress among parents of intellectually disabled children in Malawi.MethodsThis quantitative cross-sectional study was conducted in January and February 2015. One hundred and seventy mothers and fathers of children with intellectual disabilities as diagnosed by psychiatric clinical officers were randomly sampled from two selected child disability clinics. The Self-Reporting Questionnaire (SRQ) was used “as measure for psychological distress and questions on socio-demographic variables were administered to all consenting participants.” Data was coded, cleaned and analyzed using STATA.Results70/170 (41.2%) of parents of children with intellectual disabilities reported psychological distress. Univariate and multivariate analysis showed that area of residence (P < 0.05), low socio-economic status (P < 0.05), knowledge of the disability of one’s child (P < 0.05), low confidence in managing the disabled child (P < 0.05), increased perceived burden of care (P = 0.05), and having no sources for psychological support (P < 0.05) significantly predicted psychological distress among the parents for children with disabilities.ConclusionThere is huge burden of psychological distress among parents of intellectually disabled children in Malawi. Psychosocial interventions are urgently needed to support parents of children with intellectual disability in Malawi.

Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.

BackgroundEmpirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe.MethodsA two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance.ResultsA total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities.ConclusionsThe proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.

Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

La atención educativa al alumnado de educación especial en Europa = Educational attention for students with intelectual disability in Europe

People with intellectual disabilities represent one of the most disadvantaged social groups in European countries. This study gathers and describes the main lines of support for students with intellectual disability in Europe. This study presents descriptions of three representative countries, highlighting descriptions in three representative countries (Finland, France and Germany). Also, it provides an overview of educative attention for students with intellectual disability, briefly highlighting arrangements in different countries. In order to make comparisons across the states, several key elements were identified: diagnostic assessment, choice of school, specific support measures, teachers, pupil assessment and certification. Finally this is followed by a short conclusion on the impact of different kinds of support around Europe, addressing specific policies relating to educative attention for students with intellectual disability.

EPA-0365 – Mental health services for people with intellectual disabilities in Europe

People with intellectual disabilities (ID) make up to 3% of the general population. The prevalence of mental illness is higher among people with ID due to social and medical factors. The prevalence of Schizophrenia is 3%. Healthcare systems in Europe differ in how they meet the mental health needs of European citizens with ID. In services there are either specialists in ID or generalists to support people. In some systems, there is no identifiable healthcare model to meeting the specialist mental health needs of people with ID. To describe mental healthcare systems in five states in Europe and the drivers of change. A description of mental health systems for people with ID in Europe. The mental healthcare models are diverse across Europe. There are specialist community and in-patient services in the UK and Ireland. In Romania mental healthcare in ID is often in institutional settings. In Croatia, there is an emerging provision of mental healthcare in ID in the community. In Hungary there is progress in providing community care in ID. The mental health systems for people with ID in Europe employ a range of models. In general, there is a move from institution-based care to the adoption of community-based models. Healthcare systems are at different stages in their path to community provision. Healthcare policy and human rights legislation will shape healthcare models in mental health and ID that also rely on political will and advocacy on the needs of people with ID.

EPA-0333 – Psychotherapy in people with intellectual disabilities

The use of psychotherapeutic strategies in people with intellectual disabilities (ID) is at different stages in various countries in Europe. The UK and Ireland use special modified psychotherapeutic programmes for people with ID but there appears not to be many resources in psychotherapy in other European countries. The presentation considers the different psychotherapeutic approaches published in the scientific literature within the last ten years. To ascertain the use of psychotherapy in people with intellectual disabilities in Europe. ‘Psychotherapy‘, ‘intellectual‘, ‘developemental‘, and ‘disabilities’ were chosen as keywords in searching the databases. Abstracts of publications were grouped in to psychotherapy models, Cognitive Behavioural Therapy, Systemic Psychotherapy, Analytic Psychotherapy. Sub-groups included other models, for example group psychotherapy. The formats of publications were defined as case report, structured assessment, analysis of therapeutic methods The database research revealed nearly 300 publications on psychotherapy in people with ID over a ten-year period. It supports the assertion of the use of psychotherapy in ID. Most publications reported on work undertaken in the United Kingdom. The presentation gives more detailed information about the relationship between cognitive behavioural and analytic-oriented strategies, intervention type and study characteristics. There is currently a good evidence base on the use of psychotherapeutic methods in working with people with ID. Much of it is in the English language literature. There is potential for the development of models to be applied in ID. The use of psychotherapeutic approaches in ID needs to be encouraged across healthcare systems in Europe.

Training on intellectual disability in health sciences: the European perspective

Background: Intellectual disability (ID) has consequences at all stages of life, requires high service provision and leads to high health and societal costs. However, ID is largely disregarded as a health issue by national and international organisations, as are training in ID and in the health aspects of ID at every level of the education system.Specific aim: This paper aims to (1) update the current information about availability of training and education in ID and related health issues in Europe with a particular focus in mental health; and (2) to identify opportunities arising from the initial process of educational harmonization in Europe to include ID contents in health sciences curricula and professional training.Method: We carried out a systematic search of scientific databases and websites, as well as policy and research reports from the European Commission, European Council and WHO. Furthermore, we contacted key international organisations related to health education and/or ID in Europe, as well as other regional institutions.Results: ID modules and contents are minimal in the revised health sciences curricula and publications on ID training in Europe are equally scarce. European countries report few undergraduate and graduate training modules in ID, even in key specialties such as paediatrics. Within the health sector, ID programmes focus mainly on psychiatry and psychology.Conclusion: The poor availability of ID training in health sciences is a matter of concern. However, the current European policy on training provides an opportunity to promote ID in the curricula of programmes at all levels. This strategy should address all professionals working in ID and it should increase the focus on ID relative to other developmental disorders at all stages of life.

Urine screening for patients with developmental disabilities detected a patient with creatine transporter deficiency due to a novel missense mutation in SLC6A8

Creatine transporter deficiency (CTD) is an example of X-linked intellectual disability syndromes, caused by mutations in SLC6A8 on Xq28. Although this is the second most frequent genetic cause of intellectual disabilities in Europe or America after Fragile X syndrome, information on the morbidity of this disease is limited in Japan. Using the HPLC screening method we have established recently, we examined samples of urine of 105 patients (73 males and 32 females) with developmental disabilities at our medical center. And we have found a family with three ID boys with a novel missense mutation in SLC6A8. This is the second report of a Japanese family case of CTD. A systematic diagnostic system of this syndrome should be established in Japan to enable us to estimate its frequency and treatment.

The impact of living arrangements and deinstitutionalisation in the health status of persons with intellectual disability in Europe

Despite progress in the process of deinstitutionalisation, very little is known about the health conditions of people with intellectual disability (PWID) who live in large institutions and PWID living in small residential services, family homes or independent living within the community. Furthermore, there are no international comparison studies at European level of the health status and health risk factors of PWID living in fully staffed residential services with formal support and care compared with those living in unstaffed family homes or independent houses with no formal support. A total of 1269 persons with ID and/or their proxy respondents were recruited and face-to-face interviewed in 14 EU countries with the P15, a multinational assessment battery for collecting data on health indicators relevant to PWID. Participants were grouped according to their living arrangements, availability of formal support and stage of deinstitutionalisation. Obesity and sedentary lifestyle along with a number of illnesses such as epilepsy, mental disorders, allergies or constipation were highly prevalent among PWID. A significantly higher presence of myocardial infarctions, chronic bronchitis, osteoporosis and gastric or duodenal ulcers was found among participants in countries considered to be at the early stage of deinstitutionalisation. Regardless of deinstitutionalisation stage, important deficits in variables related to such medical health promotion measures as vaccinations, cancer screenings and medical checks were found in family homes and independent living arrangements. Age, number of people living in the same home or number of places in residential services, presence of affective symptoms and obesity require further attention as they seem to be related to an increase in the number of illnesses suffered by PWID. Particular illnesses were found to be highly prevalent in PWID. There were important differences between different living arrangements depending on the level of formal support available and the stage of deinstitutionalisation. PWID are in need of tailored primary health programs that guarantee their access to quality health and health promotion and the preventative health actions of vaccination programs, systematic health checks, specific screenings and nutritional controls. Extensive national health surveys and epidemiological studies of PWID in the EC member states are urgently needed in order to reduce increased morbidity rates among this population.

Health indicators for persons with intellectual disabilities in Europe

Introduction: People with intellectual disabilities comprise an estimated five million persons in the EU 27 member states. Evidence suggests that people in this group show negative disparities in health status and in access to optimal health care. They are more likely to incur secondary health conditions and thus report increased morbidity and poorer health status. Higher rates of obesity, mental health disorders, and lower rates of cardiovascular fitness, vaccination levels, and preventative health screening have been identified among people with intellectual disabilities. Epilepsy and mental health difficulties have a high rate of prevalence. To identify health disparities, measures to gather comparable health data are required. This presentation outlines the procedures adopted to develop and implement a set of health indicators for persons with intellectual disabilities in Europe. Methods: With support from the DG-public health of the EU, the Pomona group developed a set of 18 health indicators for persons with intellectual disabilities (2002–2004). Partners operationalized these indicators in a survey instrument, translated this into 14 languages, secured ethical approval, carried out a pilot study and gathered data among n=1269 participants. Results: Most (77%) lived independently or semi-independently, with their families or in group homes with fewer than 16 residents. Countries varied in the proportion of persons living in hospitals or nursing homes. About one-half of participants were in the ‘overweight’ or ‘obese’ categories. Rates of health checks were not optimal, especially for gender-specific conditions. Discussion: Results are discussed in the light of priorities for gathering and maintaining health information systems that can help to identify health needs of persons in this segment of the population, and efforts at European level to decrease health inequalities.

Brief Report: Applying an Indicator Set to Survey the Health of People With Intellectual Disabilities in Europe*

Abstract This report gives an account of applying a health survey tool by the Pomona Group that earlier documented the process of developing a set of health indicators for people with intellectual disabilities in Europe. The Pomona health indicator set mirrors the much larger set of health indicators prepared by the European Community Health Indicators group for the general population in Europe. The 18 indicators are classified under four categories: demographic characteristics, health status, health determinants, and health systems. After 3 years of collaborative project activity, key areas have been identified to heighten the visibility of people with intellectual disabilities in the public health domain so as to address evident health inequalities or disparities.