129 resultados para developmental disabilities
Resumo:
BACKGROUND: The need for structured education programmes for type 2 diabetes is a high priority for many governments around the world. One such national education programme in the United Kingdom is the DESMOND Programme, which has been shown to be robust and effective for patients in general. However, these programmes are not generally targeted to people with intellectual disabilities (ID), and robust evidence on their effects for this population is lacking. We have adapted the DESMOND Programme for people with ID and type 2 diabetes to produce an amended programme known as DESMOND-ID. This protocol is for a pilot trial to determine whether a large-scale randomised trial is feasible, to test if DESMOND-ID is more effective than usual care in adults with ID for self-management of their type 2 diabetes, in particular as a means to reduce glycated haemoglobin (Hb1Ac), improve psychological wellbeing and quality of life and promote a healthier lifestyle. This protocol describes the rationale, methods, proposed analysis plan and organisational and administrative details.
METHODS/DESIGN: This trial is a two arm, individually randomised, pilot trial for adults with ID and type 2 diabetes, and their family and/or paid carers. It compares the DESMOND-ID programme with usual care. Approximately 36 adults with mild to moderate ID will be recruited from three countries in the United Kingdom. Family and/or paid carers may also participate in the study. Participants will be randomly assigned to one of two conditions using a secure computerised system with robust allocation concealment. A range of data will be collected from the adults with ID (biomedical, psychosocial and self-management strategies) and from their carers. Focus groups with all the participants will assess the acceptability of the intervention and the trial.
DISCUSSION: The lack of appropriate structured education programmes and educational materials for this population leads to secondary health conditions and may lead to premature deaths. There are significant benefits to be gained globally, if structured education programmes are adapted and shown to be successful for people with ID and other cognitive impairments.
TRIAL REGISTRATION: Registered with International Standard Randomised Controlled Trial (identifier: ISRCTN93185560 ) on 10 November 2014.
Resumo:
This paper will explore from a ‘child’s rights perspective’ the ‘right’ of children with autistic spectrum disorder (ASD) to appropriate and meaningful education.Human ‘rights’ principles within international law will be evaluated in relation to how they have been interpreted and applied in relation to achieving this ‘right’. The International Convention of the Rights of the Child (United Nations in Convention on the rights of the child, office of the high commissioner, United Nations, Geneva, 1989) and the convention on the rights of the person with disability (United Nations in Convention on the rights of person’s with disabilities and optional protocol, office of the high commissioner, United Nations, Geneva, 2006) amongst others will be utilised to argue the case for ‘inclusive’educational opportunities to be a ‘right’ of every child on the autistic spectrum. The efficacy of mainstream inclusion is explored, identifying the position that a ‘one size fits all’model of education is not appropriate for all children with ASD.
Resumo:
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.
Resumo:
Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services.
Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities.
Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework.
Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent.
Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme
Resumo:
Background
Specialty Registrars in Restorative Dentistry (StRs) should be competent in the independent restorative management of patients with developmental disorders including hypodontia and cleft lip/palate upon completion of their specialist training.1 Knowledge and management may be assessed via the Intercollegiate Specialty Fellowship Examination (ISFE) in Restorative Dentistry.2
Objective
The aim of this study was to collate and compare data on the training and experience of StRs in the management of patients with developmental disorders across different training units within the British Isles.
Methods
Questionnaires were distributed to all StRs attending the Annual General Meeting of the Specialty Registrars in Restorative Dentistry Group, Belfast, in October 2015. Participants were asked to rate their confidence and experience of assessing and planning treatment for patients with developmental disorders, construction of appropriate prostheses, and provision of dental implants. Respondents were also asked to record clinical supervision and didactic teaching at their unit, and to rate their confidence of passing a future ISFE station assessing knowledge of developmental disorders.
Results
Responses were obtained from 32 StRs (n=32) training within all five countries of the British Isles. The majority of respondents were based in England (72%) with three in Wales, and two in each of Scotland, Northern Ireland, and the Republic of Ireland. Approximately one third of respondents (34%) were in the final years of training (years 4-6). Almost half of the StRs reported that they were not confident of independently assessing (44%) new patients with a developmental disorder, with larger numbers (72%) indicating a lack of confidence in treatment planning. Six respondents rated their experience of treating obturator patients as ‘poor’ or ‘very poor’. The majority (56%) rated their experience of implant provision in these cases as ‘good’ or ‘excellent’ with three-quarters (75%) rating clinical supervision at their unit as ‘good’ or ‘excellent’. Less than half (41%) rated the didactic teaching at their unit as ‘good’ or ‘excellent’, and only 8 StRs indicated that they were confident of passing an ISFE station focused on developmental disorders.
Conclusion
Experience and training regarding patients with developmental disorders is inconsistent for StRs across the British Isles with a number of trainees reporting a lack of clinical exposure.
