Using a Knowledge Translation Lens to Develop International Collaborations to Improve the Health of Individuals With Intellectual Disabilities (original) (raw)
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Editorial Intellectual Disabilities: Public Policy and Resources
2014
The prevalence of intellectual disability is an estimated to be 1-4%. Etiological factors such as malnutrition, lack of perinatal care, and exposure to toxic and infectious agents, which are more common in low- and middle-income (LAMI) countries, possibly contribute to a higher prevalence of intellectual disabilities in these countries.1-5 People with intellectual disabilities have a greater risk of experiencing physical and mental health problems and are vulnerable to chronic disease at an earlier age.2,6 While the disease burden due to intellectual disabilities has not been estimated, it is known that 1% of the global burden of diseases is due to lead exposure derived intellectual disability and cardiovascular diseases alone.7 In addition, persons with intellectual disabilities are frequently the most vulnerable group of the society and, on many occasions, are exposed to human rights violations and deprived of minimum services and dignity. They are often unable to access basic hea...
Journal of Policy and Practice in Intellectual Disabilities, 2005
The presentations and workshops aimed to identify domains of health disparity and examples of evidence-based or good practice and from them define statements and recommendations that would form the basis of an agenda for change. This multiprofessional international workgroup included healthcare providers, policy makers, researchers, and others involved in the field of intellectual disabilities. This report has been designed to provide a framework for addressing the disparity in health that exists for people with intellectual disabilities. The intent is to influence the direction of research, interventions, service provision, and the thinking of policy makers in order to minimize disparity. While this document reflects a population-based approach, some of the recommendations may be applied to individuals. The recommendations represent a consensus view based on currently available evidence from appropriate specialist knowledge and a review of the literature.
Journal of Policy and Practice in Intellectual Disabilities, 2004
With the increasing number of adults with intellectual disabilities (ID) surviving into old age governments, provider agencies, and practitioners are recognizing the insufficiencies of available information related to the interaction of the aging process with lifelong disability, the incidence of disease and secondary conditions with advancing age, and the means to provide quality medical and health care. These insufficiencies were noted by a World Health Organization report that identified a need for more research on the health of older adults with IDs and reports from two meetings held by United States Public Health Service and the United States Surgeon General that examined health disparities among adults with ID. This paper reports the process and results of the Tampa Scientific Conference on Intellectual Disabilities, Aging, and Health, a meeting held in 2002 specifically to examine health issues germane to older adults with ID. The meeting produced a long-term research agenda for determining more effective physical and mental health outcomes for aging and older persons with ID and recommendations for aging-related medical and health surveillance practices that would improve the overall health status of adults with ID.
Journal of Policy and Practice in Intellectual Disabilities, 2004
This article reports upon the usefulness of a focus group strategy to develop a consensus on key health and aging research recommendations for persons with intellectual disabilities (ID). This strategy was employed at an opportunistic situation, a consensus meeting (the Tampa Scientific Conference on Intellectual Disability, Aging and Health) which involved 75 diverse background participants from the United States and other countries who came together to evolve recommendations for aging health policy. The meeting's participants included basic and applied researchers with a range of professional interests (physicians, psychologists, sociologists, social workers, and nurses), public policy workers and administrators, and family members and persons with ID. A working group process, a focus group strategy, was used successfully to develop recommendations in the areas of medical and epidemiological issues, syndrome-specific concerns, and the promotion of healthy aging. The approach used was found to be particularly helpful in reconciling diverse researcher and consumer perspectives, considering both basic and applied research issues, and yielding both national-specific and internationally relevant recommendations.
Journal of Policy and Practice in Intellectual Disabilities, 2011
Gaps in policy and service systems exist for people with intellectual disability (ID). The areas of policy and services research that are required to address this situation are vast, complicated, and often interrelated. Strategically developed research agendas underpinned by a strict adherence to human rights principles can optimally inform policy and service development and reform. A framework to facilitate the conceptualization of a comprehensive and structured research agenda for ID that can underpin policy has been developed. It is informed by templates developed in mental health and health and consists of external parameters and internal domains and elements. It is overarched by human rights principles and takes into account other contextual factors including government policies and resources. The framework is applicable in a range of settings and can be used to prioritize and optimize research efforts and resources in the area of ID. The development, dissemination, and implementation of a comprehensive research agenda for ID requires the involvement of a range of key stakeholders, including consumers and carers, clinicians, researchers, and policymakers.
Journal of Policy and Practice in Intellectual Disabilities
A number of practice guidelines are available to set the benchmark for best practice when working with individuals with intellectual disabilities and co-morbid mental health concerns. However, dissemination and implementation of such guidelines in the context of psychologists' work settings has received little attention. The aim of this qualitative study was to investigate adherence to current practice guidelines by Australian psychologists working with this specialist population and explore organizational factors that may facilitate or hinder evidence-based practice implementation. Thirty-eight Australian psychologists from government disability and non-government disability organizations working primarily with individuals with intellectual disability participated in eight semistructured focus groups. Psychologists were presented with a summary of a current Australian practice guideline in dual disabilities and asked about their views of best practice adherence and implementation of the guideline including facilitative and hindering factors influencing implementation. Psychologists reported views consistent with current Australian best practice standards but noted a number of barriers impacting on adherence. Facilitators and hindrances to best practice implementation were discussed in relation to views on applicability of current guideline, organizational level considerations, organizational resources and training, organizational operations, and systemic considerations. Findings highlight the importance of a collaborative and systemic approach in order for practice guidelines to be effectively implemented for psychologists working with disabilities. Implications for policy development and training are discussed.
International Journal for Equity in Health
Background Medical care for people with intellectual and developmental disabilities (IDD) is organized differently across the globe and interpretation of the concept of medical care for people with IDD may vary across countries. Existing models of medical care are not tailored to the specific medical care needs of people with IDD. This study aims to provide an improved understanding of which aspects constitute medical care for people with IDD by exploring how international researchers and practitioners describe this care, using concept mapping. Methods Twenty-five experts (researchers and practitioners) on medical care for people with IDD from 17 countries submitted statements on medical care in their country in a brainstorming session, using an online concept mapping tool. Next, they sorted all collected statements and rated them on importance. Results Participants generated statements that reflect current medical and health care practice, their ideas on good practice, and aspirati...
Across the globe, promoting the wellbeing of vulnerable populations is a key mandate of both governments and academics. Promoting the wellbeing of persons with intellectual disabilities is arguably one of the key responsibilities of social work academics in Ghana. In fulfilling this mandate, we have conducted a number of studies into the care and health needs of Persons Living with Intellectual Disabilities (PwIDs). We have prepared this policy brief as a way of informing policy and practice and making our research relevant to practitioners and policy makers in Ghana. Our aim is to, through this brief, bridge the divide between PwIDs and healthcare professionals.
Healthy lifestyle for people with intellectual disabilities through a health intervention program
Open Journal of Nursing, 2012
There are well known gaps related to health care service and public health interventions for people with Intellectual Disabilities (ID), but there is still lack of research information of what nurses can do to reducing health disparities of persons with ID. The present study aimed at exploring the views of people with ID about a healthy lifestyle, exercise, and to take part in a health promotion program. A qualitative method was an appropriate method for capturing the informants' points of view. Participants were adults with intellectual disability who would be able to give their consent verbally and in written form. Women (n = 7) and men (n = 6). Data were collected from focus group interviews and analysed according to a qualitative content analysis of the tape-recorded and verbatim transcribed interviews. The participants took part in four workshops about healthy food, and ten physical activities addressing the connection to physical, social and emotional health. The results of the focus group interviews show that participants have knowledge about the importance of a healthy lifestyle for good health including physical activity and healthy food. Participants also describe social interaction and self-determination as important aspects in their life. It could then be concluded that the health promotion program result point at consciousness about a healthy lifestyle. There is still lack of research information of what public health nurses can do to reducing health disparities of persons with ID. Public health nurses work in community-based services and therefore they also might support persons with ID through health intervention programs.