Promoting health literacy in people with intellectual disabilities via explanatory videos: scoping reviews.

People with intellectual disabilities have a significant lower level of health literacy compared to the general population which exacerbates participation of the target group. Therefore, people with ID shall be strengthened with regard to health literacy. Explanatory videos are a promising approach to reach that goal. Yet, explanatory videos are neither frequently used in people with intellectual disabilities nor is known a lot about the efficacy of explanatory videos. Two scoping reviews were conducted. One review is an update of an existing review dealing with Health Literacy in people with intellectual disabilities. The second review focused on explanatory videos and people with intellectual disabilities. CINAHL, PubMed, PubPsych and Web of Science were searched. Health Literacy and intellectual disability: nine publications were identified: five publications focused on several aspects of Health Literacy in the target group. A total of four publications discussed ways to increase Health Literacy in people with intellectual disabilities. One publication described existing barriers in accessing and understanding health-related information for people with intellectual disabilities. Explanatory videos and intellectual disability: No eligible publications could be found. The conceptual discussion on health literacy in people with intellectual disabilities is continuing. Nevertheless, often only small subgroups are addressed. Although ideas for increasing health literacy in people with intellectual disabilities exist, there are only little interventions that were scientifically evaluated. There are publications that deal with explanatory videos in the context of intellectual disability, but they do not focus on the efficacy of these videos or special needs of the target group.

There is an ongoing scientific discussion about health literacy and people with intellectual disabilities which is still located on a conceptual level. Most of the literature that was identified via one of the scoping reviews deals with certain aspects of health literacy. Some studies examined interventions that aim at improving health literacy in people with intellectual disabilities. A fairly disregarded intervention for increasing health literacy can be found in explanatory videos. Yet, there are hardly any studies that evaluate the effectiveness of using explanatory videos for people with intellectual disabilities. Therefore, a project at the University of Applied Sciences Bielefeld develops and evaluates explanatory videos for the target group. Their health literacy shall be strengthened.

Promoting physical activity in everyday life of people with intellectual disabilities: An intervention overview.

People with intellectual disabilities show significantly lower levels of physical activity than the general population in respect to all consequences for health. A positive effect of physical activity on health preservation has been proven, but interventions for physical activity in everyday life seem to be rare for people with intellectual disabilities. Based on a previously conducted scoping review the Template for Intervention Description and Replication (TIDieR) checklist was prepared. This article describes and compares physical activity interventions in everyday life for individuals with intellectual disabilities with the aim to of identifying successful strategies and areas for improvement. The 12 included interventions are heterogeneous, but commonalities and similarities can be identified. There are suggestions for successful strategies to implement physical activity interventions. However, much information could not be found. The promotion of healthier lifestyles is important to improve the overall health in this population.

Generic health literacy measurement instruments for children and adolescents: a systematic review of the literature.

BACKGROUND: Health literacy is an important health promotion concern and recently children and adolescents have been the focus of increased academic attention. To assess the health literacy of this population, researchers have been focussing on developing instruments to measure their health literacy. Compared to the wider availability of instruments for adults, only a few tools are known for younger age groups. The objective of this study is to systematically review the field of generic child and adolescent health literacy measurement instruments that are currently available. METHOD: A systematic literature search was undertaken in five databases (PubMed, CINAHL, PsycNET, ERIC, and FIS) on articles published between January 1990 and July 2015, addressing children and adolescents ≤18 years old. Eligible articles were analysed, data was extracted, and synthesised according to review objectives. RESULTS: Fifteen generic health literacy measurement instruments for children and adolescents were identified. All, except two, are self-administered instruments. Seven are objective measures (performance-based tests), seven are subjective measures (self-reporting), and one uses a mixed-method measurement. Most instruments applied a broad and multidimensional understanding of health literacy. The instruments were developed in eight different countries, with most tools originating in the United States (n = 6). Among the instruments, 31 different components related to health literacy were identified. Accordingly, the studies exhibit a variety of implicit or explicit conceptual and operational definitions, and most instruments have been used in schools and other educational contexts. While the youngest age group studied was 7-year-old children within a parent-child study, there is only one instrument specifically designed for primary school children and none for early years. CONCLUSIONS: Despite the reported paucity of health literacy research involving children and adolescents, an unexpected number of health literacy measurement studies in children's populations was found. Most instruments tend to measure their own specific understanding of health literacy and not all provide sufficient conceptual information. To advance health literacy instruments, a much more standardised approach is necessary including improved reporting on the development and validation processes. Further research is required to improve health literacy instruments for children and adolescents and to provide knowledge to inform effective interventions.

Health literacy in childhood and youth: a systematic review of definitions and models.

BACKGROUND: Children and young people constitute a core target group for health literacy research and practice: during childhood and youth, fundamental cognitive, physical and emotional development processes take place and health-related behaviours and skills develop. However, there is limited knowledge and academic consensus regarding the abilities and knowledge a child or young person should possess for making sound health decisions. The research presented in this review addresses this gap by providing an overview and synthesis of current understandings of health literacy in childhood and youth. Furthermore, the authors aim to understand to what extent available models capture the unique needs and characteristics of children and young people. METHOD: Six databases were systematically searched with relevant search terms in English and German. Of the n = 1492 publications identified, N = 1021 entered the abstract screening and N = 340 full-texts were screened for eligibility. A total of 30 articles, which defined or conceptualized generic health literacy for a target population of 18 years or younger, were selected for a four-step inductive content analysis. RESULTS: The systematic review of the literature identified 12 definitions and 21 models that have been specifically developed for children and young people. In the literature, health literacy in children and young people is described as comprising variable sets of key dimensions, each appearing as a cluster of related abilities, skills, commitments, and knowledge that enable a person to approach health information competently and effectively and to derive at health-promoting decisions and actions. DISCUSSION: Identified definitions and models are very heterogeneous, depicting health literacy as multidimensional, complex construct. Moreover, health literacy is conceptualized as an action competence, with a strong focus on personal attributes, while also recognising its interrelatedness with social and contextual determinants. Life phase specificities are mainly considered from a cognitive and developmental perspective, leaving children's and young people's specific needs, vulnerabilities, and social structures poorly incorporated within most models. While a critical number of definitions and models were identified for youth or secondary school students, similar findings are lacking for children under the age of ten or within a primary school context.

[Students Having Parents with Mental Health Issues and Teachers' Mental Health Literacy]. / Schüler mit einem psychisch erkrankten Elternteil und die Mental Health Literacy von Lehrkräften.

Students Having Parents with Mental Health Issues and Teachers' Mental Health Literacy Mental health issues of parents of school children often negatively affects the children as well, including their school performance and social behavior in the school setting. Teachers are then required to take actions with regards to supporting children in their coping with and mastering of their home situation and their responds to educational demands. As such, schools' and teachers' actions can either support affected children and fulfill a protective function or respond inappropriately, with negative impact on the affected children. Although the societal discussion about and acceptance of mental illnesses have increased in recent years, scientific knowledge on how well teachers are prepared for meeting the needs of affected students remains insufficient. Therefore, this research study examines teachers' attitudes towards, knowledge about, and competencies regarding children affected by a mentally ill parent. 15 in-depth interviews and 3 focus groups (n = 11) with teachers from primary and secondary schools were conducted and systematically analyzed. Although burdens in the family are perceived as major influences on children's school day and performance, teachers report to not feel sufficiently prepared for and uncertain about supporting and coping with the special needs of affected students. Instead they report to "learn from a case to case" basis. Recognizing the family situation of children with mentally ill parents is reported to be especially difficult for teachers. Responding inadequately and insensitive to the needs of affected children was perceived as a serious burden for teachers themselves. While schools can function as entry points to professional social help systems, teachers frequently reported barriers and challenges in accessing, communicating, and collaborating with these systems. The practical implications of these results regarding the "Mental Health Literacy" of teachers are being discussed.

[Subjective Needs of Support in Families with a Mentally Ill Parent ­ A Literature Review]. / Subjektive Hilfebedarfe in Familien mit psychisch erkranktem Elternteil - Eine Literaturübersicht.

Mentally ill parents are often sceptical about professional help for their children although these children face an increased risk to develop a mental disease themselves. To get a better understanding of needs and help-seeking behaviour in those families a systematic literature review was conducted. Four databases (FIS, PsycINFO, PSYNDEX, PubPsych) were scanned for international and national research literature. Out of 18,057 articles 56 were included which report quantitative or qualitative studies taking the children's and parents' perspectives into account. A thematic synthesis was done to categorize the needs. Results concerning the help-seeking behaviour and the influence of demographic variables were extracted and summarized. Our results were limited by the aspect that no evaluation of study quality had been made and influences on the categorizing process by the authors' subjective perceptions are likely. There were a lot of hints regarding the needs of the families, but little report was found about help-seeking behaviour and demographic variables. The "health literacy" concept was discussed as a basis for further research in this area.

An Introduction to Health Literacy and Social Contexts with Recommendations for Health Professionals and Researchers.

Rarely do individuals seek, obtain, and understand health information in a solitary void [...].

Case management and care expertise as a prevention approach for adults with intellectual disabilities (FaPP-MgB): study protocol for a randomized-controlled trial.

BACKGROUND: Adults with intellectual disabilities have a higher prevalence of unhealthy eating habits, stress, low levels of mobility, and comparable drug consumption as the general population. Consequently, they suffer from several chronic diseases earlier and more often, but there are fewer prevention and health promotion services including this population. The goal of this study is to determine if an advanced practice nursing approach in the community with home visits is an effective way to improve the health status of adults with intellectual disabilities. METHODS: We will conduct a randomized-controlled trial with waiting list design in Hamburg, Germany. Inclusion criteria are diagnosis ICD F70-F79 and exclusion criteria are care level > 3 according to the German Social Code XI or being at the end-of-life. Participants will be block randomized. The intervention consists of advanced practice nurses performing case management, social space analysis, prevention planning, and counseling through four outreach home visits on nutrition, mobility, addiction, and stress. Comparison is usual care. The primary outcome is health status (WHODAS) after 12 months. Secondary outcomes are health-related quality of life (EQ-5D) and resilience (RS-11) after 6 and 12 months. The calculated sample size is 256 with an estimated dropout of 30%. Raters and analysts will be blinded. Analysis will be performed using ANCOVAs. DISCUSSION: By providing case management and utilizing their nursing expertise, advanced practice nurses will provide valuable input and guidance on prevention and health promotion for people with intellectual disabilities. They will close the gap between health and social care, which is prominent in Germany, through cooperation between the existing care sectors. The findings will be disseminated in peer-reviewed journals and presented at national and international conferences. TRIAL REGISTRATION: German Clinical Trials Register, DRKS00028771 , registered 4 July 2022, Universal Trial Number: U1111-1277-0595.

Health Literacy of People with Intellectual Disabilities: How Meaningful Is the Social Context for a Target Group-Oriented Model of Health Literacy?

Health literacy is primarily understood as an individual construct. People with intellectual disabilities still seem to be a "hidden" population in health literacy research. A target-orientated health literacy approach for this population is needed for developing precise and effective interventions that consider social context dimensions. Therefore, the following research question was answered: Which dimensions influence the health literacy of people with intellectual disabilities? A secondary data analysis containing 38 guided interviews with people with mild to moderate intellectual disabilities was conducted. The analysis followed the content analysis by Schreier (2012). Six main dimensions were inductively outlined, which are "interpersonal relationship", "organizations and communities", "healthcare system", "education", "digital interaction spaces", "politics", and "cultural contexts". All these dimensions influence people with intellectual disabilities on an individual level regarding their level of health literacy. The importance of these single dimensions becomes clear, although for now, the link between all these dimensions is not yet considered. In future research, the focus should be on how to develop interventions considering social context dimensions. Furthermore, analyzing the connection between those dimensions seems promising.

"With Enthusiasm and Energy throughout the Day": Promoting a Physically Active Lifestyle in People with Intellectual Disability by Using a Participatory Approach.

People with intellectual disabilities have a comparatively low level of physical activity and are affected by associated numerous impairments and diseases. However, target group specific interventions and concepts aiming at sustainable physical activity-related behavior change in everyday life are rare and the needs and perspectives of the target group have hardly been considered so far. Therefore, a target-group oriented intervention was developed. The research and developmental process was characterized by a participatory approach, involving people with intellectual disabilities throughout the whole process. For example, the interview guideline, design of the interview situation and ways of communicating were developed in a participatory manner. Twenty-four qualitative interviews with people with intellectual disabilities were conducted to explore individual physical activity-related experiences and strategies. Individual and contextual influences on physical activity were identified. Interview results were used to conceptualize an intervention that aims at promoting physical activity in the everyday life of people with intellectual disabilities by strengthening their self-management strategies. The intervention was tested in practice and modified based on communicative validation methods. Good acceptance in the long term is also expected, as the intervention takes place in people's living environment, is socially embedded and builds upon the needs of the target group.

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

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.

Adapting the European Health Literacy Survey Questionnaire for Fourth-Grade Students in Germany: Validation and Psychometric Analysis.

BACKGROUND: Until now, children younger than age 13 years have received little attention in research on health literacy. Although some tools assess children's health literacy, no validated tool is available that assesses self-reported health literacy in a systematic and comparable way. The European Health Literacy Survey Questionnaire (HLS-EU-Q) is a valid and reliable measure of adults' self-reported health literacy. It has also been used among adolescents, but it has never been adapted for use with children. We believe it would be worth adapting for younger age groups so that self-reported health literacy could be assessed continuously. OBJECTIVE: This study aimed to quantitatively test an adapted scale based on the HLS-EU-Q developed for German-speaking children age 9 and 10 years. METHODS: An adapted 26-item HLS-EU-Q scale was given in a paper-and-pencil survey to 907 fourth-grade students in North Rhine-Westphalia, Germany. The psychometric properties of the scale were investigated with item analysis and factor analyses, and both convergent and discriminant validity were assessed. KEY RESULTS: Of the 26 tested items, 9 were discarded due to poor performance in terms of missing values, item difficulty, and factor structure. This left a 15-item scale with a high internal consistency (α = .791) that takes only a short time to administer. The scale, called the HLS-Child-Q15, had a low correlation with functional health literacy (r = .107, p < .001), and a moderate correlation with indicators of self-efficacy (ρ = .280 to .306, p < .001). The latter indicates adequate discriminant validity, whereas the former points to a need to further investigate convergent validity. CONCLUSIONS: This is the first study to apply an age-adapted version of the HLS-EU-Q to children. Statistical analyses indicated the successful development of a promising instrument, but further research is needed on its factor structure and validity. This study contributes significantly to the comparative assessment of health literacy across the life course by providing a measurement tool for children age 9 and 10 years. [HLRP: Health Literacy Research and Practice. 2020;4(3):e144-e159.] PLAIN LANGUAGE SUMMARY: The European Health Literacy Survey Questionnaire was adapted for German-speaking 9- and 10-year-old children, and 26 adapted items were tested in a written survey of 907 children. Item analysis resulted in a 15-item scale with satisfactory psychometric properties. This scale, the HLS-Child-Q15, shows high internal consistency and can be used to assess self-reported health literacy in German-speaking 9- and 10-year-old children. Nonetheless, further studies are needed to validate these results.

Adapting the European Health Literacy Survey for Fourth-Grade Students in Germany: Questionnaire Development and Qualitative Pretest.

BACKGROUND: Promoting health literacy in early life is regarded as an important means of sustaining health literacy and health over the life course. However, little evidence is available on children's health literacy, partly due to a scarcity of suitable measurement tools. Although there are 18 tools to measure specific items of health literacy for people younger than age 13 years, there is a lack of comparable, valid, and age-appropriate measures of generic health literacy. OBJECTIVE: This study aimed to develop and qualitatively test an age-adapted version of the European Health Literacy Survey Questionnaire (HLS-EU-Q) for German-speaking children age 9 and 10 years. Although validated for adults and adolescents, the HLS-EU-Q has never been age-adapted or used with children. METHODS: The content and language of HLS-EU-Q items were adapted for this age range. The literature was consulted to inform this process, and adaptations were developed and selected based on consensus among authors. From an item pool of 102 adapted items, 37 were given to 30 fourth-grade students in a cognitive pretest, which is a standard procedure in questionnaire development aiming to explore how items are interpreted. Participants (18 girls, 12 boys) were mostly age 9 or 10 years (range, 9-11 years). KEY RESULTS: Problems with misinterpretation were identified for some items and participants (e.g., items designed to assess participants' perceived difficulty in accessing and appraising health information were partly answered on the basis of knowledge and experience). A final selection of 26 well-performing items corresponded to the underlying HLS-EU-Q framework. CONCLUSIONS: This is the first age-adapted version of the HLS-EU-Q. A preliminary 26-item questionnaire was successfully developed that performed well in a cognitive pretest. However, further research needs to verify its validity and reliability. The present findings help to advance the measurement of generic self-reported health literacy in children and highlight the need for cognitive pretesting as an essential part of questionnaire development. [HLRP: Health Literacy Research and Practice. 2020;4(2):e119-e128.] PLAIN LANGUAGE SUMMARY: The European Health Literacy Survey Questionnaire is used for testing adults' health literacy. It was adapted for German-speaking children age 9 and 10 years. Based on a review of the original items and the literature, 26 questionnaire items were developed and tested in interviews with 30 children. Although problems with understanding could be identified, the questionnaire was mostly well understood.

Child and Youth Health Literacy: A Conceptual Analysis and Proposed Target-Group-Centred Definition.

(1) Background: This article adopts an interdisciplinary perspective to analyse, examine, and reflect upon prominent health literacy (HL) understandings in childhood and youth. (2) Method: The conceptual analysis combined Rodgers' and Jabareen's approaches to conceptual analysis in eight phases. (3) Results: First, we present exploratory entry points for developing a child-specific HL understanding based on the six dimensions of a 'health-literacy 6D model'. Second, we describe and reflect upon five meta-level dimensions covering the HL definitions and models for children and youth found in the conceptual analysis. Third, we integrate our findings into a target-group-centred HL definition for children and youth. (4) Discussion/Conclusion: This article raises awareness for the heterogeneity of the current conceptual HL debate. It offers a multidisciplinary approach for advancing the existing understanding of HL. Four recommendations for future actions are deduced from the following four principles, which are inherent to the proposed target-group-centred HL definition: (a) to characterize HL from an asset-based perspective, (b) to consider HL as socially embedded and distributed, (c) to recognize that HL develops both in phases and in flexible ways, and (d) to consider the multimodal nature of health-related information. Further research is necessary to test the feasibility and applicability of the proposed definition and conceptual understanding in both research and practice.

What are the family needs when a parent has mental health problems? Evidence from a systematic literature review.

PROBLEM: Little evidence exists showing how a given high-risk group of children born to parents with poor mental health seek help and how care may be improved in order to better reach and support their families. METHODS: A systematic literature review was undertaken to identify the needs and help-seeking behaviors of children and their parents. Through an analysis of both quantitative and qualitative studies, published in German- and English-speaking research literature, the needs of children and parents were identified and categorized. Findings concerning their help-seeking behavior and the influence of demographic variables on needs and help-seeking behaviors were also described. FINDINGS: In the primary studies, the most identified parental needs were "the need for being a good parent"; "worries about the child's well-being"; and "the need for practical help." For children, the categories identified included "the need for knowledge"; "worries about parent's well-being"; and "the need for normality." However, information about help-seeking behaviors and influences of demographic factors was fairly limited in the literature. CONCLUSIONS: In families with parental mental health problems, it seems especially important to take a family-focused approach. The individual needs of children (and their families) should shape the planning of treatment and nursing care.