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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.

Background. The COVID-19 pandemic is expected to have a substantial impact on people with an intellectual disability. The goal of the current study was to explore the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period in the Netherlands.Method. A descriptive qualitative methodology was conducted, using semi-structured individual interviews with six people with a mild intellectual disability. Data were analysed thematically.Results. Three overarching themes were found: (i) Missing social contact and having people close; (ii) Being housebound has changed my daily life; and (iii) Hard to understand the preventive measures.Conclusions. Important insights into the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period were gained. These insights are valuable with respect to a potential second COVID-19 wave or a future infection-outbreak.

The application of restrictions plays a great part in daily support of people with moderate intellectual disability (ID). In this study we examine the evaluation of relatives of restrictions applied to their family members with moderate ID. Relatives are key and permanent figures in the lives of people with moderate intellectual disability. Moreover, relatives in their role as representatives are authorized to make decisions in case people with moderate ID are not able to oversee the consequences of their actions. To explore relatives’ evaluation of restrictions, we conducted semi-structured interviews with 10 relatives. Qualitative analysis was carried out using a thematic approach. We found that respondents consider restrictions necessary when they promote physical well-being, safety and indistinctive, ‘normal’, appearance of their family members with ID. In applying these restrictions a ‘rules are rules’ and a ‘tailor-made rules’ approach can be discerned. The ‘tailor-made approach’ provides space for dialogue with people with moderate ID. In this dialogue the criteria of proportionality, effectiveness, and subsidiarity are helpful. In using these criteria, the application of a restriction has to be in proportion, has to lead to the desired effect, and, finally, should be as unintrusive as possible for the person concerned. As such, it is recommended that, in dialogue, support staff, people with moderate ID themselves, and their relatives seek ways to examine what kinds of restrictions are justified for people with moderate ID.

Objectives: Care providers are key agents in the lives of individuals with an intellectual disability (ID). The quality of their support can be affected by manifestations of stigma. This scoping review was conducted to explore studies that provide indications of care providers’ stigmatization of people with ID. Methods: A structured search was made in four databases to identify relevant studies in English-language peer-reviewed journals. Records were systematically and independently screened by the researchers. Results: The 40 articles included in this review were mainly conducted in Western countries and used Likert-type self-report measures of explicit attitudes. Stigmatization seemed more distinct concerning people with high support needs. The few studies on public stigma preliminary suggest that staff may also stigmatize people with ID based on other social identities. Regarding the support of structural stigma, staff reported skepticism regarding community inclusion for people with high support needs, and tended to be ambivalent about the protection-or-empowerment balance in the support of people with ID. Possible indications of stigmatization regarding sexuality were found on specific issues, such as self-determination and privacy. Agreement of staff with certain rights did not necessarily lead to staff acting in accordance with such rights. Conclusion: Indications of stigmatization of people with ID by care providers were found. Stigmatizing attitudes might affect the quality of care providers’ support. Potential leads for future interventions concern creating awareness, sharing power, addressing diagnostic overshadowing, and providing explicit policy translations. Directions for future research concern strengthening the methodology of studies and enriching the studied topics.

Objectives: One of the general articles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) focuses on the right of freedom to make one's own choices and being aware of the importance for persons with disabilities to obtain independence. People with intellectual disability (ID) are, to a greater or lesser degree, dependent on significant others, such as support staff with respect to decision making. For that reason, the UNCRPD also stresses the relevance of supportive decision making, which should be stimulated by service policies. However, support staff may find it necessary to restrict people with ID to make their own choices, for example to prevent them from harm. Since restrictions should be applied in the interest of people with ID, it is essential to examine their own perception. In this study, we have examined how people with moderate ID themselves perceive and evaluate restrictions in daily care, using a qualitative methodology.Method: Based on an extensive pilot study, we conducted interviews being close in time and place in which possible restrictions might occur. Additionally, we applied triangulation of sources. After conducting interviews with eight persons with a moderate ID, we examined their clinical files and interviewed their key workers. Qualitative analysis was carried out by two researchers, using an inductive, thematic approach.Results: Results demonstrate communality between the participating people with ID and their key workers in perception and evaluation of restrictions, in people with ID tending to comply with the applied restrictions. When the participants with ID and their key workers differ in their evaluation of applied restrictions, this appears a value based dissensus.Conclusion: To ensure that restrictions are applied in the best interest of people with ID, it is essential that staff are attentive to the wishes of people with ID, which might be based on different values. By asking people with ID about their experiences and views of the restrictions imposed on them, we hope to contribute to an ongoing and open dialogue to inform the planning and delivery of services for people with ID based on ‘best interest’ principles.