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Bakgrund Intellektuell funktionsnedsättning [IF] omfattar komplexa och varierande hälsoproblem. Personer med IF lider ofta av samsjuklighet och är därför en vanligt förekommande patientgrupp inom hela den somatiska hälso- och sjukvården. Det är däremot inte lika vanligt förekommande att det finns hälso- och sjukvårdspersonal som besitter speciell kunskap om personer med IF. Hälso- och sjukvårdspersonalens begränsade kunskap om IF i kombination med kommunikationshinder som kan uppstå i vårdmötet riskerar att resultera i att personcentreringen i omvårdnaden brister och patienter med IF löper en högre risk att drabbas av vårdskador jämfört med personer utan IF. Syfte Syftet med denna litteraturöversikt var att undersöka hur personer med intellektuell funktionsnedsättning och deras vårdare upplever den somatiska hälso- och sjukvården. Metod Databassökningar utfördes i PubMed och CINAHL och 14 vetenskapliga originalartiklar som uppfyllde författarnas inklusionskriterier valdes ut för att inkluderas i resultatet. Samtliga 14 artiklar kvalitetsgranskades utifrån Sophiahemmet Högskolas bedömningsunderlag för vetenskaplig klassificering och kvalitet. Författarna utförde sedan en integrerad dataanalys för att sammanställa resultatet. Resultat Tre huvudteman och sju underteman identifierades efter att ha sammanställt resultaten av de 14 originalartiklarna. Dessa tre huvudteman var: upplevelser av information och kommunikation; upplevelser av kunskap och attityder; och upplevelser av relation och tillit. Resultatet belyste att personer med IF och deras vårdare upplevde bristande kommunikation, otillräcklig kunskap och negativa attityder hos hälso- och sjukvårdspersonalen. Dessa brister tillsammans med otillgänglig information, undermåliga vårdanpassningar och dålig kontinuitet resulterade i bristande tillit till hälso- och sjukvården och dess personal. Slutsats För att främja en personcentrerad och patientsäker vård och förbättra personer med IF:s och deras vårdares upplevelser, Background People with intellectual disabilities [ID] have complex and varied health issues and commonly suffer from co-morbidity. Therefore, it is not uncommon to find patients with ID within the somatic health care system. It is, however, not as common for health care staff to possess knowledge about people with ID. The health care staff's limited knowledge of ID in combination with communication barriers that can arise often result in a lack of person-centered care. Patients with ID are therefore at a greater risk of getting harmed in health care compared to people without ID. Aim The aim of this literature review was to investigate how people with intellectual disabilities and their carers experience somatic health care. Method Database searches were performed in PubMed and CINAHL and resulted in the inclusion of 14 original scientific articles that met the authors' inclusion criteria. All 14 articles were quality-checked based on Sophiahemmet University's assessment document for scientific classification and quality. The results were then compiled using integrated data analysis. Results Three main themes and seven sub-themes were identified after collating the results of the 14 original articles. The three main themes were: experiences of information and communication; experiences of knowledge and attitudes; and experiences of relationship and trust. The result highlighted that people with ID and their carers experienced inadequate communication and knowledge, as well as negative attitudes from health carestaff. These faults, in combination with inaccessible information, substandard care adaptations and poor continuity, resulted in a lack of trust in the health care system and itsstaff. Conclusions It is of necessity that nurses gain an increased knowledge about people with ID and learn how to communicate with them in a clear and respectful manner, to ensure that people with ID receive a safe and person-centered care and to improve people with ID and their care

The overall aim of the research described in this thesis was to inform and facilitate shared decision making of people with intellectual disabilities who are in the palliative phase of their illness, their relatives and support staff. The research described in this thesis started with the acknowledgement that an aid for shared decision making in the palliative phase with people with intellectual disabilities is desirable (1, 2), but that such an aid did not exist. A scoping review identified ten studies on how people with intellectual disabilities in the last phase of life are involved in decision-making processes about their care and treatment. These studies all emphasised the relevance of involving people with intellectual disabilities themselves, or at least their relatives, in making decisions at the end of life. Only two papers described processes of decision-making in which persons with intellectual disabilities actively participated. We concluded that knowledge about participation of people with intellectual disabilities in the end-of-life decision-making process is mostly lacking. In order to better align palliative care to the values of people with intellectual disabilities, we developed a conversation aid, called In-Dialogue (3). In a Delphi process, an expert panel completed online questionnaires about the relevance and feasibility of draft versions of In-Dialogue. This expert panel consisted of 11 people with intellectual disabilities, 14 relatives, and 65 care professionals. In two rounds, the members of the panel reached agreement on different components of In-Dialogue, including its lay-out. The In-Dialogue conversation aid consists of a box containing a pad that looks like a board game, see Figure 1. The aid focuses on four main themes: 1) who are you; 2) illness and end of life; 3) making choices; and 4) application, i.e. sharing the decisions made

Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care facilities for frail people with mild to severe intellectual disabilities was evaluated with semi-structured interviews with five relatives, nine support staff and three people with intellectual disabilities. Results: Most participants considered the training helpful to apply shared decision-making. Sixty-three people with intellectual disabilities participated in In-Dialogue conversations. Almost all interviewees stated that these conversations provided additional insight into people's concerns and preferences. Involvement of people with profound intellectual disabilities and their relatives appeared to be challenging.Conclusion: Conversations about illness and the end of life appeared to be feasible with the In-Dialogue conversation aid and provided insight into people's experiences and preferences.

Background People with intellectual disabilities are less physically active and suffer from ill-health more than the general population. Support staff play an important role in the person's life. This study aimed to explore the support staff's experiences regarding the feasibility of adapted web-based exercise for people with intellectual disabilities. Method Participants with intellectual disabilities living in community-based settings were recruited for a web-based exercise study. Eight semi-structured interviews were carried out with their support staff before and after the intervention period. Results The main theme, ‘Support staff are crucial for feasibility’ encompasses the importance of communication, structure, and motivation in improving physical activity for people with intellectual disabilities. Conclusion The experiences of support staff, indicate that a web-based exercise program is feasible for the target group, and one way to overcome challenges for PA, where the role of the staff is crucial.

Background: Responsible digital care refers to any intentional systematic effort designed to increase the likelihood of a digital care technology developed through ethical decision-making, being socially responsible and aligned with the values and well-being of those impacted by it. Objective: We aimed to present examples of action opportunities for (1) designing “technology”; (2) shaping the “context” of use; and (3) adjusting the behavior of “users” to guide responsible digital care for people with intellectual disabilities. Methods: Three cases were considered: (1) design of a web application to support the preparation of meals for groups of people with intellectual disabilities, (2) implementation of an app to help people with intellectual disabilities regulate their stress independently, and (3) implementation of a social robot to stimulate interaction and physical activity among people with intellectual disabilities. Overall, 26 stakeholders participated in 3 multistakeholder workshops (case 1: 10/26, 38%; case 2: 10/26, 38%; case 3: 6/26, 23%) based on the “guidance ethics approach.” We identified stakeholders’ values based on bottom-up exploration of experienced and expected effects of using the technology, and we formulated action opportunities for these values in the specific context of use. Qualitative data were analyzed thematically. Results: Overall, 232 effects, 33 values, and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholder values included quality of care, autonomy, efficiency, health, enjoyment, reliability, and privacy. Both positive and negative effects could underlie stakeholders’ values and influence the development of action opportunities. Action opportunities comprised the following: (1) technology: development of the technology (eg, user experience and customization), technology input (eg, recipes for meals, intervention options for reducing stress, and activities), and technol

Background: People with intellectual disabilities are more likely to be prescribed psychotropic medication than the general population and are frequently prescribed multiple medications. Understanding people with intellectual disabilities and carer perspectives is essential to improving the quality of psychotropic medication prescribing and usage. Method: A rapid review explored people with intellectual disabilities' understanding of psychotropic medications, as well as family members and paid carers, and how this understanding can be improved. Results: Twenty-one journal articles were included. Lack of understanding of medication was universal, with participants often unaware of adverse effects, alternatives, and rights around medication. There was also a lack of involvement in decision making for all participants. Some interventions aimed at people with intellectual disabilities or paid carers helped to improve knowledge. Conclusion: Evaluating how best to improve psychotropic medication understanding for people with intellectual disabilities, family members and paid carers should be a focus for future research.

Background: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can be supported to lead flourishing lives. Methods: Interviews and focus groups were conducted with 50 people with intellectual disabilities and 28 family carers. Data were analysed using an adapted template approach and conceptual analysis. Results: Our analysis led to the identification of one overarching theme; ‘Doing what you love and growing’ and sub‐themes; ‘Choice, opportunity and empowerment’, ‘Being out in the world’ and ‘Lowered expectations and static lives’. Conclusion: People with intellectual disabilities can lead capability‐deprived lives. Methodological and practice innovation is needed to better understand what people value and ensure they have capability sets that enable flourishing lives.

Background People with intellectual disabilities are less physically active and suffer from ill-health more than the general population. Support staff play an important role in the person's life. This study aimed to explore the support staff's experiences regarding the feasibility of adapted web-based exercise for people with intellectual disabilities. Method Participants with intellectual disabilities living in community-based settings were recruited for a web-based exercise study. Eight semi-structured interviews were carried out with their support staff before and after the intervention period. Results The main theme, ‘Support staff are crucial for feasibility’ encompasses the importance of communication, structure, and motivation in improving physical activity for people with intellectual disabilities. Conclusion The experiences of support staff, indicate that a web-based exercise program is feasible for the target group, and one way to overcome challenges for PA, where the role of the staff is crucial., Parasport och inkluderande träning

Background: In the context of caring for people with intellectual disabilities, knowledge (scientific, professional, and experiential) is of profound importance for care professionals to be able to provide sufficiently good care. Through their knowledge policies, care organisations for people with intellectual disabilities seek to stimulate their care professionals to share and apply the knowledge they have acquired. However, it often takes a long time for the most up-to-date scientific knowledge is acquired by care professionals and properly applied within the care and support for people with intellectual disabilities. In addition to this, professional knowledge and experiential knowledge are also insufficiently shared and utilised. If care professionals do not have the requisite knowledge, then this can negatively impact upon their ability to provide professional support, and, in turn, lead to poorer quality of care and quality of life for service users. This thesis focuses on how care professionals in care organisations for people with intellectual disabilities can be stimulated to effectively share and apply knowledge within their practice. Research question and method: Five sub-studies investigated what factors and strategies influence both the sharing and application of knowledge within the context of care and support for people with intellectual disabilities. The first sub-study identified organisational factors that had been identified in extant scientific literature in this field. This revealed the important contingent role of management. Based on this, the second and third sub-studies focused on the key role of CEOs. Through interviews with CEOs, we found out which strategies they deploy in their knowledge policies, what motivated this, and which factors influence the subsequent execution of these strategies. These studies showed, amongst other things, that establishing a good fit between their strategies and inco

Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being.

Purpose: Evidence of overprescribing of psychotropic medicines to manage challenging behaviour in people with intellectual disabilities has led to national programmes within the UK to promote deprescribing, such as stopping the overprescribing of medication in people (with learning disabilities, autism or both). To successfully implement deprescribing initiatives, we need to understand how to engage stakeholders in the process. Design/methodology/approach: In a published systematic review, we reported evidence about the process of deprescribing psychotropic medicines for people of all ages with intellectual disabilities and challenging behaviour. As a part of the original review, we searched for evidence about stakeholders’ experiences of the psychotropic deprescribing process, which was synthesised and reported within the current study. Findings: Six studies were identified. Involving carers and people with intellectual disabilities, providing ongoing support and improving access to non-pharmacological interventions, including positive behaviour support, may contribute to successful outcomes, including reducing or stopping psychotropic medicines and improving quality of life. Implementing psychotropic deprescribing requires a multidisciplinary collaborative care approach and education for stakeholders. Originality/value: There have been no previous reviews of stakeholder experiences of deprescribing psychotropic medications for people with intellectual disabilities and challenging behaviour. The existing literature is scant, and further research is needed.

In this article, we describe the healthcare system for people with intellectual disabilities (ID) in the Netherlands. The general background about healthcare for people with ID is the same worldwide: their health needs are often unrecognized and unmet. We delineate, from a historical perspective, the steps the Netherlands has taken to change the situation for them. The Netherlands crossed a milestone in 2016 when it ratified the UN Convention on the Rights of Persons with Disabilities. Despite challenges in establishing numbers, an estimated ID prevalence of 1.45% was determined. The Dutch healthcare system has different levels, is funded through six distinct laws, and is complicated. The Netherlands has a spectrum of disability care services that increasingly collaborate in shaping the care of people with ID. People with ID and their representatives are increasingly involved in the process of shaping this care. The general practitioner plays a central role in the Dutch healthcare system, serving as the gatekeeper to medical specialists. Furthermore, the Netherlands recognizes the role of a physician for people with ID as a medical specialization. The core competencies of the ID physician include knowledge of the etiology and consequences of ID and associated health problems. The ID physician also knows how to deal with diagnostic and therapeutic barriers. Key challenges facing ID healthcare in the Netherlands include difficulties supporting people with ID due to the increasing complexity of society, concerns about continuity of care at the transition age (18−/18+), inadequate reach of population screening programs for people with ID, and limited availability of (routine) data for research on the ID population. The Dutch government encourages research in the ID field to overcome these challenges by financially supporting academic collaboratives. Substantial progress has been made, but key challenges remain, showing that there is still great room for improvement.

Background: We investigated the prevalence of swallowing difficulties and associated factors in people with intellectual disability. Methods: We included people aged 50+ receiving care for people with intellectual disabilities. The Dysphagia Disorder Survey (DDS) was used to assess swallowing difficulties. We determined the agreement between the DDS and swallowing difficulties in medical records. We used logistic regression analyses to explore associated factors. Results: One thousand and fifty people were included. The prevalence of swallowing difficulties was 43.8%. Swallowing difficulties were not reported in the medical records of 83.3% of these cases. Frailty (odds ratio (OR) = 4.22, 95% CI = 2.05–8.71), mobility impairment (OR = 2.50, 95% CI = 1.01–6.19), and mealtime dependency (OR = 3.05, 95% CI = 1.10–8.47) were independently associated with swallowing difficulties. Conclusion: Swallowing difficulties are prevalent in older people with intellectual disability but may be under-recognised. Frailty may be a good indicator for population-based screening for swallowing difficulties.

Referencias bibliográficas: • Alnahdi, G. H. (2019). The interaction between knowledge and quality of contact to predict Saudi university students’ attitudes toward people with intellectual disability. International Journal of Developmental Disabilities, 67, 202–208. https://doi.org/10.1080/20473869.2019.1638582 • Alnahdi, G. H., Elhadi, A., & Schwab, S. (2020). The positive impact of knowledge and quality of contact on university students’ attitudes towards people with intellectual disability in the Arab world. Research in Developmental Disabilities, 106 (103765), 103765. https://doi.org/10.1016/j.ridd.2020.103765 • American Psychiatry Association-APA. (2022). Diagnostic and statistical manual of mental disorders-TR (DSM-5-TR) (5th ed.). American Psychiatry Association. • Amossy, R., & Herschberg-Pierrot, A. (2020). Estereotipos y clichés. EUDEBA. • Aston, M., Breau, L., & MacLeod, E. (2014). Diagnoses, labels and stereotypes: Supporting children with intellectual disabilities in the hospital. Journal of Intellectual Disabilities: JOID, 18 (4), 291–304. https://doi.org/10.1177/1744629514552151 • Avramidis, E., & Norwich, B. (2002). Teachers’ attitudes towards integration/inclusion: A review of the literature. European Journal of Special Needs Education, 17 (2), 129–147. https://doi.org/10.1080/08856250210129056 • Bates, C. (2020). “It’s nothing to be ashamed of, I’m like, I’m bisexual and I love women, I like men”–Being a bisexual person with an intellectual disability. Journal of Bisexuality, 20 (4), 493–513. https://doi.org/10.1080/15299716.2020.1836544 • Beart, S., Hardy, G., & Buchan, L. (2005). How people with intellectual disabilities view their social identity: A review of the literature. Journal of Applied Research in Intellectual Disabilities, 18 (1), 47–56. https://doi.org/10.1111/j.1468-3148.2004.00218.x • Ben-Zeev, D., Young, M. A., & Corrigan, P. W. (2010). DSM-V and the stigma of mental illness. Journal of Mental Health (Abingdon, England), 19 (4), 31, Stereotypes result from interpersonal and intergroup relations and have specific repercussions on behaviour. This study investigated the stereotypes held by university students in the Faculty of Education, Complutense University of Madrid, Spain, towards people with intellectual disabilities and analysed possible attitudinal differences based on previous contact with people with intellectual disabilities or who had family members with intellectual disabilities. Results obtained through participants’ responses to a list of adjectives showed a clear positive stereotype formed by adjectives such as determined, sincere, affectionate, and capable but no significant differences were found between the groups. The study results were analysed in detail and compared with previous studies, from which future lines of research have been suggested, including longitudinal research, larger samples, and addressing additional variables. Examining the attitudes of people with intellectual disabilities towards others with intellectual disabilities is also important., Depto. de Investigación y Psicología en Educación, Fac. de Educación, TRUE, pub

Våld mot människor med intellektuell funktionsnedsättning är ett allvarligt samhällsproblem. Omfattande tidigare forskning visar att denna grupp är överrepresenterade som offer för våld och övergrepp såväl inom som utanför funktionshinderomsorgens domän. Trots detta saknas forskning om våldets fenomenologi och kontextensens betydelse för våld inom funktionshinderomsorgens område. Denna scoping review syftar till att undersöka våldets karaktär på stöd- och omsorgsboende för individer med intellektuell funktionsnedsättning. Detta arbete visar på att dessa boende är miljö där våld av både interpersonell och institutionell karaktär frodas. De boendes utsatthet förstärks av faktorer såsom graden av funktionalitet och kön. Våldets negativa effekter ses även förstärkta av den omständighet att det inte sällan är omsorgsorganisationen eller enskilda representanter för denna som står för utförandet av våldshandlingar. Genom att belysa risk- och skyddsfaktorer kopplade till våld och makt inom funktionshinderomsorgen och omsorgsboenden framträder bilden av den organisatoriska kulturen som en central faktor när det gäller våld och missförhållande kopplat till miljön på stöd- och omsorgsboenden. Trots att lagstiftning och riktlinjer inom funktionshinderomsorgen har utvecklats väsentligt de senaste årtiondena så tycks ett fostrande ideal med institutionella anor leva vidare inom delar funktionshinderomsorgen., Violence against people with intellectual disabilities is a significant social problem. Extensive previous research shows that this group is over-represented as victims of violence and abuse both within and outside the domain of disability services. Despite this, research on the phenomenology of violence is lacking. This scoping review aims to examine the nature of violence in residential care settings for individuals with intellectual disabilities. This review shows that these settings for are an environment where violence of both an interpersonal and institutional nature thrives. Residents' vulnerability is reinforced by factors such as their level of functionality and gender. The negative effects of violence are also amplified by the fact that it is frequently the care organisation or individual representatives of the organisation who carry out acts of violence. By highlighting risk and protection factors linked to violence and power in disability care and residential care settings, the picture emerges of an organisational culture as a central factor in violence and abuse linked to the environment in residential care settings. Legislation and guidelines in disability care have developed considerably in recent decades, but still an educationist ideal with institutional roots lives on both inside and outside disability care.

Introduction Staff working with individuals with intellectual disabilities face challenges addressing sexual health. Professionals in this context have diverse backgrounds and education, and little is known about their attitudes and skills in providing support for a healthy sexual life and preventing abuse. Moreover, this topic has not been explored in the Norwegian context. The current study examined health professionals’ attitudes toward addressing sexual health with individuals with intellectual disabilities in Norwegian municipal health and care services. Methods A cross-sectional study was conducted using the Norwegian version of the professionals’ attitudes toward addressing sexual health among 72 health professionals working in municipal services for people with intellectual disabilities in Mid-Norway. The data was collected from November 2022 to January 2023. Results The professionals reported feeling partially comfortable and prepared to address sexual health issues with clients. They consistently expressed a need for more basic knowledge about sexual health and training in communicating about sexuality. Attitudes toward addressing sexual health varied based on the professionals’ education, gender, age, and work experience. Conclusions More targeted training on sexual health is needed within the educational programmes in health and social sciences. Sexual health should also be continuously addressed in the workplace and among colleagues. The differences in attitudes between professionals indicate that the composition of the staff benefits from diversity.Policy Implications Healthcare managers are responsible for ensuring greater openness and reflection on attitudes toward sexuality among individuals with intellectual disabilities in workplaces. Educational institutions must provide the necessary skill development and training in communication about sexual health for this client group., CC BY 4.0

Background: Little is known about how health issues identified at the annual health check (AHC) are followed up and addressed, how participants self-manage their health in between AHCs, and what support they receive. This research aimed to explore this. Methods: People with intellectual disabilities (n = 12), and/or their supporters residing in Wales, were interviewed following their AHC and again at 6 and 11 months. A recurrent cross-sectional thematic analysis was undertaken. Results: Five main themes emerged from interview one: going for a health check, issues identified, and actions taken, supporting the self-management of health, the personal context, and addressing health inequities. Four main themes emerged from follow-up interviews: follow-up, supporting the self-management of health, the need for reasonably adjusted health services, and going for another health check. Conclusion: A broader system of support around the AHC is required if people are to achieve or maintain the best possible health.

Introduction. The assessment of well-being is crucial for measuring the effects of psychosocial interventions in people with intellectual disabilities. The aim of this study was to adapt and validate a measure of integrative well-being, the Pemberton Happiness Index (PHI) to use it specifically for this population. Methods. The Pemberton Happiness Index was first tailored to individuals with intellectual disabilities (PHI-Intellectual Disabilities). Then a sample of 130 adults with mild-moderate intellectual disabilities completed this adapted version alongside other well-being and affective measures. Results. The psychometric properties of this new PHI-Intellectual Disabilities were shown to be very good (i.e., internal consistency, convergent and incremental validity). Conclusion. The study provides initial evidence of the reliability and validity of a brief measure of well-being that can be used for both applied and research purposes specifically for adults with mild-moderate intellectual disabilities., Plena inclusión, Depto. de Personalidad, Evaluación y Psicología Clínica, Fac. de Psicología, TRUE, pub

Facial expression recognition plays an important role in human behaviour, communication, and interaction. Recent neural networks have demonstrated to perform well at its automatic recognition, with different explainability techniques available to make them more transparent. In this work, we propose a facial expression recognition study for people with intellectual disabilities that would be integrated into a social robot. We train two well-known neural networks with five databases of facial expressions and test them with two databases containing people with and without intellectual disabilities. Finally, we study in which regions the models focus to perceive a particular expression using two different explainability techniques: LIME and RISE, assessing the differences when used on images containing disabled and non-disabled people.

Studies and reports have shown that a significant portion of young individuals with intellectual disabilities who complete their studies at special needs upper-secondary school find themselves outside the labor market. Among these, a considerable number are described as being somewhere else, i.e., not in employment, education, or daily activities. This is despite Sweden, through the ratification of the UN Convention on the Rights of Persons with Disabilities (Ds 2008:23), acknowledging their right to work on equal terms as others. The aim of this essay is to highlight the underlying reasons why young individuals with intellectual disabilities are excluded from the labor market and the reasons they find themselves in NEED (Not in Employment, Education, or Daily Activity). In a non-systematic literature review, twelve scientific articles found through PsycInfo and Libsearch were examined to address the challenges and opportunities that young individuals with intellectual disabilities face in relation to employment and work. The results were then analyzed based on theories of stigma, social justice, and developmental ecology. The findings primarily point to three reasons why young individuals with intellectual disabilities are excluded from labor markets and are in NEED: 1. stigmatization of the group, 2. structural barriers such as a complex welfare system and limited educational opportunities, and 3. difficulties in participating in today's work structure due to limited adaptive abilities.

The issue of affective and sexual relationships in intellectual disability (ID) has been hidden and even denied for a very long time. The research focuses on the point of view of professionals working in the field of ID. Through a qualitative-quantitative research design, the aim was, on the one hand, to understand whether sexuality and affectivity are topics that are addressed within the various structures through projects or courses, and, on the other hand, to give space to the representations, practices, and experiences of the professionals themselves. Data show an acknowledgement of the importance that people with ID can have sexual and affective experiences, but, at the same time, a gap in daily practices, which is attributed to three reasons: the lack of training; the idea that there are needs that are more important to work on; the difficulty of sharing ideas about this topic in the team.

The internet has become very central to today’s society. The aim of this scoping review was to map internet use among people with an intellectual disability (ID) in Sweden, and to scrutinise the phenomenon from a critical perspective. The concepts of digital divide, digital inequality, social construction of intellectual disability, and power relations were applied to conceptualise the empirical material. The results showed that people with ID have limited access to the internet. A discrepancy in approaches towards internet use was identified. Generally, people with ID subscribe to a positive view of the internet. Among professionals a generally pessimistic view was instead identified. People with ID are described as a vulnerable and naive group, who presumably cannot protect themselves from the risks the internet entails. From a critical perspective, control of internet access could strengthen asymmetric power, and human rights of social participation are withheld from people with ID.

The aim of this qualitative study is to explore how staff members within daily activities forpeople with intellectual disabilities experience and implement the right to self-determination.Through in-depth interviews and thematic analysis, the study aims to understand thechallenges and facilitators that influence staff members' attitudes and behaviors towardspromoting client autonomy. Data from six staff members working in daily activities havebeen analyzed using Michel Foucault's power-theory, Miranda Frickers theory abouthermeneutical injustice and empowerment theory. Findings reveal a complex interplay ofpersonal thoughts, organizational structures, and client needs shaping the way autonomy isunderstood and practiced. Key themes include empowerment through choice-making, barriersto autonomy fulfillment, and the need for supportive environments. An overall conclusion ofthe study is the importance of training and ongoing support for staff in enhancing theautonomy of individuals with disabilities. Implications for policy and practice underscore thenecessity of creating inclusive and empowering environments that embrace and prioritizeindividual autonomy.

Mensen met een verstandelijke beperking worden steeds ouder door verbeterde levensomstandigheden en betere medische zorg. Dit komt overeen met de toenemende vergrijzing in de algemene bevolking. Hoewel de levensverwachting van zowel mensen met als zonder verstandelijke beperking toeneemt, verschilt het verouderingsproces van mensen met een verstandelijke beperking van dat van ouderen in de algemene bevolking. Het verouderingsproces van mensen met een verstandelijke beperking begint vaak al eerder: vanaf het 50e levensjaar worden mensen met een verstandelijke beperking al tot ‘de ouderen’ gerekend. Ouderen met een verstandelijke beperking hebben daarnaast een verhoogd risico op het ontwikkelen van gezondheidsproblemen, zoals diabetes, depressie, obesitas, visuele beperkingen, slikproblemen, angststoornissen en dementie. De toename in levensverwachting en het mogelijk complexe verouderingsproces van mensen met een verstandelijke beperking heeft geleid tot veranderingen in ondersteuningsbehoeften en tot nieuwe uitdagingen voor zorgprofessionals in de dagelijkse zorg en ondersteuning. Desondanks is er nog weinig onderzoek gedaan naar de ondersteuningsbehoeften of het perspectief van ouderen met een verstandelijke beperking, en daarbij passende ondersteuningsbenaderingen. Het promotieonderzoek bestaat uit drie onderdelen. Hieronder een omschrijving van elk onderdeel, inclusief de resultaten: 1. In het eerste deel zijn de belangrijkste ondersteuningsbehoeften van ouderen met een verstandelijke beperking op de verschillende domeinen van kwaliteit van leven onderzocht. Hiervoor werden psychologen met expertise op het gebied van ouderen met een verstandelijke beperking geïnterviewd. Daarnaast werden gesprekken gevoerd met ouderen met verstandelijke beperking over wat zij het belangrijkst vinden in hun dagelijks leven en welke ondersteuningsbehoeften zij ervaren. De resultaten laten zien dat ouderen met een verstandelijke beperking, naast ondersteuning op het vlak v

Young people with an intellectual disability (ID) generally have poorer opportunities to participate in society and to influence their own lives than other youth. The possibility to participate and have influence in social life is a fundamental human right. Previous studies have measured factors such as e.g., how young people with ID manage to achieve goals in terms of participation in e.g. daily activities, problem solving and self-efficacy. Further research is needed to, through co-creation, find ways to investigate and supplement how participation can be made possible for young people with ID. The purpose of this study was to investigate how participation and influence for young people with ID can be enhanced using the participatory visual method photovoice. Participants were six students with severe to middle severe ID in a special high school in a municipality in northern Sweden and four of their teachers and resource personnel. The students participated in three photovoice workshops by taking and discussing photos. A focus group with school staff were conducted about their experiences of photovoice to enable student’s participation. Collected data were analyzed with content analysis. The preliminary results show that participation and influence can be enabled for participants through photovoice if it is adapted to their cognitive skills and includes careful preparation and adaptations. The process of using photographs turned out to be significant. Photovoice might be used together with youth with ID as co-creators, but more preparation, repetition and time is needed than when photovoice is used with others.

People with Intellectual Disability (ID) were more likely to contract COVID-19 infection and more likely to die from the consequences. However, there is no evidence on the long-term impact of COVID-19 infection in people with ID. Post-Covid Syndrome (PCS) is an established diagnosis that requires specialist clinical support. To date there is no data on how common PCS is in people with ID, or how symptoms present. Dysphagia is identified as a clinical marker because of the known association with PCS, and the clear objective diagnostic criteria applicable through specialist assessment. This investigation presents a cohort of people with ID, who developed dysphagia/worsening of dysphagia post diagnosis with COVID-19. Cases were identified through support from the Royal College of Speech and Language Therapists. Data was collected by electronic survey, including application of the COVID-19 Yorkshire Rehabilitation Scale-modified (C19-YRSm). The C19-YRSm is a validated assessment tool for PCS and it's impact upon functional disability. This case series identifies that symptoms consistent with PCS are present in people with ID, post-COVID-19 infection. The risk of diagnostic overshadowing or misdiagnosis is high due to the subjective nature and the quality of PCS symptoms. People with ID who develop PCS may not be readily identified by clinical services and therefore not be accessing the specialist medical support required. Furthermore, changes in behaviour secondary to PCS may lead to unnecessary increased prescribing of psychotropic medication which in itself risks worsening dysphagia. Dysphagia could be an important bellwether to identify PCS in people with ID. [Abstract copyright: © 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.]

The study aimed to gain insight into knowledge management in the intellectual dis-abilities (ID) care sector during the COVID-19 pandemic. We explored and describedhow knowledge producers, intermediaries, and knowledge users experienced knowl-edge management during this crisis situation, the responses to the specific knowl-edge needs in the ID-care sector, and changes in roles and collaboration during thisperiod. Twenty-five individual in-depth semi-structured interviews were conductedwith knowledge producers, intermediaries, and knowledge users in the Dutch ID-caresector. An inductive thematic analysis was conducted. Three key themes were identi-fied: (1) knowledge needs during the COVID-19 pandemic, (2) experiences withknowledge management, and (3) roles and collaboration in knowledge management.There was an urgent need for specific ID-related knowledge and how to translateavailable evidence for the general population into ID-care settings. In knowledgemanagement, the focus was on knowledge production and exchange, with validationand application receiving less attention. Within stakeholder groups, collaboration andknowledge exchange were intensified by existing or new knowledge infrastructures.Between stakeholder groups, knowledge producers and users created short lines toexchange needs and produce knowledge. This paper provides unique insights intoknowledge management in the Dutch ID-care sector during the COVID-19 pandemic.Implications are discussed to improve future knowledge management processes. Sup-port with knowledge validation and local knowledge infrastructures (complementaryto centralized national knowledge infrastructures) help to assess the reliability andusefulness of knowledge and improve its use in practice during future pandemic-related crisis situations.

Background: Mainstream economic evaluations methods may not be appropriate to capture the range of effects triggered by interventions for people with intellectual disabilities. In this systematic review, we aimed to identify, assess and synthesise the arguments in the literature on how the effects of interventions for people with intellectual disabilities could be measured in economic evaluations. Method: We searched for studies providing relevant arguments by running multi‐database, backward, forward citation and grey literature searches. Following title/abstract and full‐text screening, the arguments extracted from the included studies were summarised and qualitatively assessed in a narrative synthesis. Results: Our final analysis included three studies, with their arguments summarised in different methodological areas. Conclusions: Based on the evidence, we suggest the use of techniques more attuned to the population with intellectual disabilities, such sensitive preference‐based instruments to collect health states data, and mapping algorithms to obtain utility values.

There is an increased emphasis on utilizing and sharing new knowledge within daily practice, in order to optimize the quality of care and support for people with intellectual disabilities. This emphasis involves incorporating three types of knowledge: scientific knowledge, the expertise of healthcare professionals, and the experiential knowledge of people with intellectual disabilities. Collaborating with researchers, professionals, and individuals with intellectual disabilities contributes toward the optimal development of evidence-based care and support. Alongside this collaboration, the incorporation of experiential and professional knowledge is invaluable for applying research findings to both individual cases and unique settings. This paper, firstly, explores how experiential knowledge can complement professional and scientific knowledge and, secondly, underscores the benefits of incorporating experiential knowledge within the development of evidence-based care and support for people with intellectual disabilities.

Background: Mainstream economic evaluations methods may not be appropriate to capture the range of effects triggered by interventions for people with intellectual disabilities. In this systematic review, we aimed to identify, assess and synthesise the arguments in the literature on how the effects of interventions for people with intellectual disabilities could be measured in economic evaluations. Method: We searched for studies providing relevant arguments by running multi‐database, backward, forward citation and grey literature searches. Following title/abstract and full‐text screening, the arguments extracted from the included studies were summarised and qualitatively assessed in a narrative synthesis. Results: Our final analysis included three studies, with their arguments summarised in different methodological areas. Conclusions: Based on the evidence, we suggest the use of techniques more attuned to the population with intellectual disabilities, such sensitive preference‐based instruments to collect health states data, and mapping algorithms to obtain utility values.

Background: Although the current preventive measures relating to COVID-19 can lead to challenges in the daily work of direct support workers (e.g. keeping 1.5 m distance), it remains vital to uphold the principles of person-centred care when working with older people with intellectual disabilities. The current study explores the extent to which direct support workers have been able to apply a specific form of person-centred care (i.e. integrated emotion-oriented care, or IEOC) when working with older people with intellectual disabilities during the COVID-19 pandemic. Method: Six direct support workers from five facilities serving older people with intellectual disabilities in the Netherlands participated in this qualitative study. They participated in a two-hour focus group, which was transcribed verbatim, and the transcript was analysed thematically. Results: Three themes emerged: (i) the negative impact of changes due to the COVID-19 measures on service users; (ii) the adaptation of direct support workers to changes due to the COVID-19 measures; and (iii) putting the needs and wishes of service users first. Conclusion: This study provides first impressions into the experiences of direct support workers providing person-centred care to older people with intellectual disabilities during the COVID-19 pandemic.

Bakgrund: Det finns ett växande intresse för att tillhandahålla palliativ vård för personer med intellektuell funktionsnedsättning, och därmed ett erkännande av deras särskilda behov och svårigheter att få tillgång till rättvis vård i livets slutskede. Detta ställer krav på att vårdpersonal ska kunna identifiera palliativa behov, samt inte minst bedöma när livets slut närmar sig. Denna kunskap gynnar både individen och hela samhället. Då tillgången till palliativ vård för personer med intellektuell funktionsnedsättning är sämre än för övrig befolkning sökte denna litteraturstudie identifierade orsaker till denna ojämlikhet. Syfte: Att beskriva vårdpersonals upplevelser av faktorer som möjliggör och försvårar palliativ vård för personer med intellektuell funktionsnedsättning. Metod: Studien är en litteraturöversikt. En tematisk analys med induktiv ansats genomfördes där inkluderade artiklar analyserats utifrån Braun och Clarkes tematiska analysmetod. Totalt valdes 14 artiklar ut från databaserna CINAHL och PubMed. Resultat: I resultatet framkom fem huvudteman – hur etiska värderingar påverkar vårdpersonals upplevelser av palliativ vård, kunskapsnivåns betydelse för möjligheten att ge god palliativ vård, de praktiska förutsättningar som arbetsgivare tillhandahåller, vårdpersonals upplevelse av hur närstående påverkar den palliativa vården samt hur vårdpersonals känslor påverkar deras upplevelse av att ge palliativ vård – vilka belyste vårdpersonalens erfarenheter. Slutsats: Resultatet visade både hinder och möjligheter för palliativ vård för personer med intellektuell funktionsnedsättning. Vårdpersonalens upplevelser präglas av ett fokus på hinder där bristande utbildning samt bristande samarbete tydligast försämrar möjligheten till jämlik vård till patientgruppen. Utifrån dessa resultat finns förutsättningar att utveckla framtida vård., Background: There is a growing interest in providing palliative care for people with intellectual disabilities, and as a consequence a growing interest in recognizing their special needs and difficulties in accessing equitable end-of-life care. This places demands on healthcare staff to be able to identify palliative needs, not least to assess when the end of life is approaching. This knowledge benefits both the individual and society as a whole. As palliative care for people with intellectual disabilities is less avaliable than for the rest of the population, this literature study looked for identified reasons for this inequality. Aim: To discribe healthcare professional’s experperinces of factors that facilitates or hinder palliative care for people with intellectual disabilities. Method: This study is a literature review. A thematic analysis with an inductive approach was carried out, where included articles were analyzed using Braun and Clarke's thematic analysis method. A total of 14 articles were selected from the databases CINAHL and PubMed. Results: Five main themes emerged in the result – How ethical values affect the way healthcare professional´s experiences palliative care, How the level of knowledge impacts the possibility to provide good palliative care, The practical conditions that an employer offers, How healthcare professionals experience the impact of the patients' family members on the palliative care and How the emotions of the healthcare professional’s affects their experience of providing palliative care – which illuminated the experiences of the healthcare professionals. Conclusion: The result showed both obstacles and opportunities for palliative care for persons with intellectual disabilities. The healthcare professionals' experience is characterized by a focus on obstacles, where insufficient training and cooperation are the most prominent factors in making it more difficult to provide equal care for the patient group. Based on these resu