Dataset Information

Inclusion of People with Intellectual Disabilities in Health Literacy: Lessons Learned from Three Participative Projects for Future Initiatives.

ABSTRACT: Background: People with intellectual disabilities (IDs) constitute a high-risk group in relation to several diseases. Promoting their health literacy (HL) could be highly beneficial in the management of health information and making informed decisions. However, there are varying ranges of cognitive, communication and literacy levels in people with IDs. According to our literature review, a HL concept for this target group has not been adequately conceptualized. Methods: To increase knowledge about the target group, adapted HL results from three innovative (research) projects are presented. Results: The key factors are: a) target group orientation; b) social context and everyday life; c) individual resources, like communication and literacy levels; d) a multi-modal strategy to strengthen HL; and e) the self-determination and participation of people with IDs. Conclusions: The projects illustrate that the HL of people with IDs has been successfully addressed by taking these key factors into account. A target-group-orientated HL concept could affect more than positive health outcomes; it could also empower a high-risk group in relation to health problems. However, to develop successful action concepts and strategies, valid data are crucial. The heterogeneity of people with IDs is one of the biggest challenges in obtaining such data. Future studies will need to face these challenges.

SUBMITTER: Latteck AD

PROVIDER: S-EPMC7177820 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Inclusion of People with Intellectual Disabilities in Health Literacy: Lessons Learned from Three Participative Projects for Future Initiatives.

Latteck Änne-Dörte ÄD Bruland Dirk D

International journal of environmental research and public health 20200403 7

<i>Background</i>: People with intellectual disabilities (IDs) constitute a high-risk group in relation to several diseases. Promoting their health literacy (HL) could be highly beneficial in the management of health information and making informed decisions. However, there are varying ranges of cognitive, communication and literacy levels in people with IDs. According to our literature review, a HL concept for this target group has not been adequately conceptualized. <i>Methods</i>: To increase ...[more]

PMID: 32260257

Similar Datasets

Project description:BackgroundKnowledge translation platforms (KTPs), which are partnerships between policymakers, stakeholders, and researchers, are being established in low- and middle-income countries (LMICs) to enhance evidence-informed health policymaking (EIHP). This study aims to gain a better understanding of the i) activities conducted by KTPs, ii) the way in which KTP leaders, policymakers, and stakeholders perceive these activities and their outputs, iii) facilitators that support KTP work and challenges, and the lessons learned for overcoming such challenges, and iv) factors that can help to ensure the sustainability of KTPs.MethodsThis paper triangulated qualitative data from: i) 17 semi-structured interviews with 47 key informants including KTP leaders, policymakers, and stakeholders from 10 KTPs; ii) document reviews, and iii) observation of deliberations at the International Forum on EIHP in LMICs held in Addis Ababa in August 2012. Purposive sampling was used and data were analyzed using thematic analysis.ResultsDeliberative dialogues informed by evidence briefs were identified as the most commendable tools by interviewees for enhancing EIHP. KTPs reported that they have contributed to increased awareness of the importance of EIHP and strengthened relationships among policymakers, stakeholders, and researchers. Support from policymakers and international funders facilitated KTP activities, while the lack of skilled human resources to conduct EIHP activities impeded KTPs. Ensuring the sustainability of EIHP initiatives after the end of funding was a major challenge for KTPs. KTPs reported that institutionalization within the government has helped to retain human resources and secure funding, whereas KTPs hosted by universities highlighted the advantage of autonomy from political interests.ConclusionsThe establishment of KTPs is a promising development in supporting EIHP. Real-time lesson drawing from the experiences of KTPs can support improvements in the functioning of KTPs in the short term, while making the case for sustaining their work in the long term. Lessons learned can help to promote similar EIHP initiatives in other countries.

Project description:BackgroundPatients and healthcare stakeholders are increasingly becoming engaged in the planning and conduct of biomedical research. However, limited research characterizes this process or its impact.ObjectiveWe aimed to characterize patient and stakeholder engagement in the 50 Pilot Projects funded by the Patient-Centered Outcomes Research Institute (PCORI), and identify early contributions and lessons learned.DesignA self-report instrument was completed by researchers between 6 and 12 months following project initiation.ParticipantsForty-seven principal investigators or their designees (94 % response rate) participated in the study. MAIN MEASURES Self-report of types of stakeholders engaged, stages and levels of engagement, facilitators and barriers to engagement, lessons learned, and contributions from engagement were measured.Key resultsMost (83 %) reported engaging more than one stakeholder in their project. Among those, the most commonly reported groups were patients (90 %), clinicians (87 %), health system representatives (44 %), caregivers (41 %), and advocacy organizations (41 %). Stakeholders were commonly involved in topic solicitation, question development, study design, and data collection. Many projects engaged stakeholders in data analysis, results interpretation, and dissemination. Commonly reported contributions included changes to project methods, outcomes or goals; improvement of measurement tools; and interpretation of qualitative data. Investigators often identified communication and shared leadership strategies as "critically important" facilitators (53 and 44 % respectively); lack of stakeholder time was the most commonly reported challenge (46 %). Most challenges were only partially resolved. Early lessons learned included the importance of continuous and genuine partnerships, strategic selection of stakeholders, and accommodation of stakeholders' practical needs.ConclusionsPCORI Pilot Projects investigators report engaging a variety of stakeholders across many stages of research, with specific changes to their research attributed to engagement. This study identifies early lessons and barriers that should be addressed to facilitate engagement. While this research suggests potential impact of stakeholder engagement, systematic characterization and evaluation of engagement at multiple stages of research is needed to build the evidence base.

Project description:Due to the rapid increase in the availability of patient data, there is significant interest in precision medicine that could facilitate the development of a personalized treatment plan for each patient on an individual basis. Radiation oncology is particularly suited for predictive machine learning (ML) models due to the enormous amount of diagnostic data used as input and therapeutic data generated as output. An emerging field in precision radiation oncology that can take advantage of ML approaches is radiogenomics, which is the study of the impact of genomic variations on the sensitivity of normal and tumor tissue to radiation. Currently, patients undergoing radiotherapy are treated using uniform dose constraints specific to the tumor and surrounding normal tissues. This is suboptimal in many ways. First, the dose that can be delivered to the target volume may be insufficient for control but is constrained by the surrounding normal tissue, as dose escalation can lead to significant morbidity and rare. Second, two patients with nearly identical dose distributions can have substantially different acute and late toxicities, resulting in lengthy treatment breaks and suboptimal control, or chronic morbidities leading to poor quality of life. Despite significant advances in radiogenomics, the magnitude of the genetic contribution to radiation response far exceeds our current understanding of individual risk variants. In the field of genomics, ML methods are being used to extract harder-to-detect knowledge, but these methods have yet to fully penetrate radiogenomics. Hence, the goal of this publication is to provide an overview of ML as it applies to radiogenomics. We begin with a brief history of radiogenomics and its relationship to precision medicine. We then introduce ML and compare it to statistical hypothesis testing to reflect on shared lessons and to avoid common pitfalls. Current ML approaches to genome-wide association studies are examined. The application of ML specifically to radiogenomics is next presented. We end with important lessons for the proper integration of ML into radiogenomics.

Dataset Information

Inclusion of People with Intellectual Disabilities in Health Literacy: Lessons Learned from Three Participative Projects for Future Initiatives.

Publications

Inclusion of People with Intellectual Disabilities in Health Literacy: Lessons Learned from Three Participative Projects for Future Initiatives.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets