Background Health literacy (HL) is a crucial factor in terms of health and health-related outcomes. HL refers to personal and social resources as well as the abilities to access, understand, appraise and apply health information to make self-determined health decisions. Due to reduced resources including cognitive abilities it is assumed that HL in people with intellectual disabilities (PWID) is low. Up to 3% of the general population have an ID (IQ < 70). Methods Current state of the art is presented via a mixed-method literature review published in 2019. Against that, results from 5 target group orientated groups are presented (n = 50). Results Literature Review (12 studies incl.): HL does not go beyond a purely functional understanding. Studies assume that the HL level of PWID is very low, but fail to mention a reference source. Overall, studies are mainly from the health professionals' perspective and exceptions directly questioned or focused people with ID. People with ID still seems to be a 'hidden' population in HL research. Group discussions: An introducing quiz about health-related topics turns into a discussion within the group of PWID. Topics were physical activity, nutrition and health advices from health professionals like GPs. Instructions of physicians were discussed; a critical view of health advices were taken. Bassed on experiences own health decisions are described. Trained caregivers like nurses are stated as an own professional HL resource. Communicative and critical HL have been demonstrated. Conclusions There is only little knowledge about HL in PWID. Promoting HL could be highly beneficial for managing health information with a positive impact on PWID themselves (empowerment), their (family) caregivers, and the health care system (reducing health costs). A debate to conceptualize HL for PWID is mandatory. This must be based on valid data, consider the perspectives of PWID and have to respect the resources of PWID. Future directives will be discussed. Key messages People with ID communicative and critical health literacy is is available but not yet explored how it can be increased. A target-adapted health literacy of people with intellectual disabilities is beneficial, it it takes the perspectives of this target group into account.
Background Physical inactivity is a global health problem. Physically active people show lower rates of chronic diseases or mortality. People with intellectual disabilities (PWID), a vulnerable group for health problems, have significantly lower levels of physical activity (PA) than general population. Due to reduced cognitive abilities, communicative and literacy skills, PWID have less access to health programs. Target-group-oriented interventions are rare. Methods Methodological triangulation to survey PA-related health competences in all 3 subcategories: 3 participating observations and 24 interviews with PWID (inclusion criteria for both: mild or moderate ID); staff online survey (n = 67), all in an integration assistance institution. Participatory approach: 2 expert groups with PWID advise researchers e.g. validating results. Results As expected, movement abilities and body awareness various highly from general population. An effect knowledge is widely spread (PA = health), but execution knowledge of PA is only marginally available e.g. not knowing how to increase PA healthy. Control competences as results from interview and observations: intrinsic motivation is highly present (unlike results from staff survey), but volition - self-efficacy and bring into action - is very poor, self-management and a lack of ideas are identified as a major problem. Low expectation of self-efficacy proved to be the biggest obstacles for PA, but caregiver are an own health resource. Expert groups confirm important of PWID perspectives on living environment. Conclusions To promote a PA lifestyle, health education with a focus on promoting self-efficacy orientated to the living environment (incl. caregiver) regarding own perspectives and health resources is needed. In this way, a vulnerable group for health problems can be empowered. Results indicate a successful approach to promote PA-related health competences in PWID to minimize health inequalities in relation to general population. Key messages Health inequalities among people with intellectual disability through promoting a PA lifestyle can be minimized. Intervention for people with intellectual disabilities must take into account the perspectives and the resources of the users.
Background Inclusive research aims to involve people with intellectual disabilities (ID) with their views and values in all steps of the research process. But there is a lack of published training programs that address the qualification of people with ID for their roles as co-researchers. Objectives The aim was to develop a training program, based on constructivist didactics, in order to empower people with ID to act as initiators of health-related research, interviewers, data analysts and authors. In addition, the program aims to promote social self-organization and health literacy. The program consists of four steps: 1) Recruiting, relationship and team building; 2) Analysis of communication skills; 3) Choice of topic and formulation of a research question relevant to the lifeworld of the co- researchers 4) Exercises, carried out with an open, flexible approach, taking into account the individual biographies, knowledge, skills and interests of the team. Professional researchers moderate this process and promote the activation of knowledge and experiences. The whole process comprised weekly team meetings over a period of 7 months. Results The co-researchers were successfully empowered to deal with new kinds of demands and tasks. As of March 2020, the co- researchers selected pain as their topic and successfully formulated research questions, developed a guideline for semi-structured interviews and acquired essential interviewing skills. Data collection and analysis are still pending. Conclusions The implemented inclusive research approach pursued here, offers opportunities for generating research findings that are more relevant for the target group and their lifeworld. Consequently, professionals can better address the needs of their clients and develop tailored interventions. For the involved co-researchers with ID the training program seems to be successful in empowering them in decision-making and in reflecting on their own and other's health-related needs. Key messages People with intellectual disabilities can successfully be qualified as co-researchers with a 7-months weekly training program. The training program helps the co-researchers in reflecting on their own and other’s health-related needs.
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