User Requirements and Perceptions of a Sensor System for Early Stress Detection in People With Dementia and People With Intellectual Disability: Qualitative Study.

BACKGROUND: Timely detection of stress in people with dementia and people with an intellectual disability (ID) may reduce the occurrence of challenging behavior. However, detecting stress is often challenging as many long-term care (LTC) residents with dementia and residents with ID have communication impairments, limiting their ability to express themselves. Wearables can help detect stress but are not always accepted by users and are uncomfortable to wear for longer periods. Integrating sensors into clothing may be a more acceptable approach for users in LTC. To develop a sensor system for early stress detection that is accepted by LTC residents with dementia and residents with ID, understanding their perceptions and requirements is essential. OBJECTIVE: This study aimed to (1) identify user requirements for a garment-integrated sensor system (wearable) for early stress detection in people with dementia and people with ID, (2) explore the perceptions of the users toward the sensor system, and (3) investigate the implementation requirements in LTC settings. METHODS: A qualitative design with 18 focus groups and 29 interviews was used. Focus groups and interviews were conducted per setting (dementia, ID) and target group (people with dementia, people with ID, family caregivers, health care professionals). The focus groups were conducted at 3 time points within a 6-month period, where each new focus group built on the findings of previous rounds. The data from each round were used to (further) develop the sensor system. A thematic analysis with an inductive approach was used to analyze the data. RESULTS: The study included 44 participants who expressed a positive attitude toward the idea of a garment-integrated sensor system but also identified some potential concerns. In addition to early stress detection, participants recognized other potential purposes or benefits of the sensor system, such as identifying triggers for challenging behavior, evaluating intervention effects, and diagnostic purposes. Participants emphasized the importance of meeting specific system requirements, such as washability and safety, and user requirements, such as customizability and usability, to increase user acceptance. Moreover, some participants were concerned the sensor system could contribute to the replacement of human contact by technology. Important factors for implementation included the cost of the sensor system, added value to resident and health care professionals, and education for all users. CONCLUSIONS: The idea of a garment-integrated sensor system for early stress detection in LTC for people with dementia and people with ID is perceived as positive and promising by stakeholders. To increase acceptability and implementation success, it is important to develop an easy-to-use, customizable wearable that has a clear and demonstrable added value for health care professionals and LTC residents. The next step involves pilot-testing the developed wearable with LTC residents with dementia and residents with ID in clinical practice.

Factors affecting the feelings of safety among individuals with mild intellectual disabilities and severe challenging behaviour in residential care: A qualitative study of professional and service users' perspectives.

Background: This study focuses on what feeling safe means for people with mild intellectual disabilities and severe challenging behaviour, and which factors affect their sense of safety. Method: Thematic analysis was used to analyse data collected during (1) ethnographic longitudinal research and (2) interviews and focus groups among professionals and service users. Results: Feelings of safety can relate to three main themes: (1) a physical environment that reduces risks and temptations; (2) a reliable, predictable, and supportive environment; and (3) an accepting environment that enables service users to establish a normal life. An analysis of which factors affect service users' sense of safety identified 20 themes (e.g. team climate) and 34 subthemes (e.g. interactions with other service users). Conclusions: A range of interconnected factors can affect service users' feelings of safety. Future research should explore what organisations and external actors (e.g. the police) can do to promote those feelings.

A behavioural description of meaningful moments of interaction between people with profound intellectual disabilities and support staff.

BACKGROUND: It can be challenging for support staff to develop meaningful moments of interaction with people with profound intellectual disabilities. Gathering information on observable behaviour characterising such meaningful moments is expected to be beneficial. METHOD: Three staff-client dyadic interactions were videotaped for 30 min. During reviewing the recording, staff members indicated which moments of interaction they experienced as meaningful. Per dyad, one meaningful moment was microanalytically coded via a developed coding system, and behaviourally described. RESULTS: The coding system reliably coded behaviour at the micro level. Exploratory results indicated that looking, movement and touching were most shown, and that staff displayed this behaviour more frequently than their clients. Both exhibited behaviours substantially more often during meaningful moments than at their onset. DISCUSSION: People with profound intellectual disabilities are more engaged during meaningful moments of interaction compared to at their onset. In daily practice, cultivating circumstances increasing their involvement is important.

Parent-perceived autonomy-supportive experiences and basic psychological needs of people with complex support needs: Development and preliminary psychometric evaluation of two questionnaires.

Background: Understanding and supporting basic psychological needs of persons with complex support needs is important but difficult because of communicative challenges . We developed and tested questionnaires to obtain parents' perspectives on autonomy support and basic psychological needs of autonomy, competence, and relatedness. Method: Two parent-informant questionnaires were developed, administered, and subjected to psychometric property analyses. Participants were 63 Dutch parents of persons diagnosed with severe or profound intellectual and multiple disabilities. Results: Principal component analyses revealed a one-factor structure for the Parental Perceptions on Autonomy-Supportive Experiences questionnaire, while the Parental Perceptions on Basic Psychological Need Signals questionnaire yielded two-factors interpreted as Noticing Signals of Autonomy and Noticing Signals of Competence/Relatedness. Evidence for construct validity was found for both instruments. Conclusions: Preliminary evaluation of the new questionnaires is encouraging, but further validation with a larger sample size is warranted.

Informal Network Members' Perspectives and Experiences on Work for People with Intellectual Disabilities: A Thematic Synthesis.

PURPOSE: The level of participation of people with intellectual disabilities (ID) in various forms of work, including daytime activities, appears to be suboptimal. Informal networks of people with ID constitute crucial forms of support, as they can significantly influence occupational choices and opportunities. This review aims to synthesize existing research for the purpose of examining how informal network members perceive the meaning of employment or daytime activities for their relatives with ID. METHODS: Following the PRISMA guideline, a systematic search of scientific literature published between 1990 and July 2022 was conducted. The qualitative results from twenty-seven studies (qualitative and mixed-method) were analyzed using thematic synthesis. RESULTS: Four overarching themes and several subthemes were identified: (I) Ensuring customized work for my relative; (II) The ongoing need to collaborate and share care responsibilities with professionals; (III) The meaning of work for both my relative and myself; and (IV) Achieving full work participation for my relative is neither straightforward nor self-evident. CONCLUSIONS: Informal networks place great value upon customized and sustainable work opportunities for their relatives with ID, particularly community-based work. While network members play an important role in creating these opportunities, they encounter obstacles resulting from both collaboration difficulties with professionals and employers and public and structural forms of stigma. Researchers, professionals, policy makers, and employers are encouraged to collaborate with individuals with ID as well as their networks to increase the meaningful work opportunities available to them.

Pushing the boundaries of digital social contact: Experiences of people with disabilities and their social networks during the COVID-19 pandemic.

During the COVID-19 pandemic, many people with intellectual disabilities living in care facilities could not receive visitors. Health authorities suggested the use of digital social contact as an alternative for in-person visits. We examined how people with intellectual disabilities living in care facilities experienced the use of digital social contact with their informal social network throughout 2020. Residents, their relatives, volunteer visitors, direct support staff, and care facility managers (N = 283) completed an online questionnaire, of whom 35 participated in an interview. Video calling and in-person visits were among the most common forms of staying in touch. Experiences with digital social contact depended on residents' abilities and support needs, and on preconditions, such as staff availability. The first phases of the pandemic led to experiences of possibilities and benefits of using digital social contact as complementary to in-person contact for people with different levels of intellectual disability, also after the pandemic.

Exploring the experiences of self-determination of individuals with mild intellectual disabilities and epilepsy.

BACKGROUND: While epilepsy can decrease quality of life and self-determination in individuals without intellectual disabilities, the impact of epilepsy on experienced self-determination in people with intellectual disabilities remains unclear. METHOD: We conducted semi-structured interviews with six adults (four men, two women) aged 30-61 with mild intellectual disabilities and drug-resistant epilepsy to investigate their experiences of self-determination. The data were analysed using Interpretative Phenomenological Analysis. RESULTS: Three main themes were identified: (A) I am a competent person with epilepsy; (B) My social needs: being accepted as I am and stability in relationships; and (C) Being in control. CONCLUSIONS: In this study, the impact of epilepsy on experienced self-determination of people with mild intellectual disabilities outweighs the influence of intellectual disabilities. Identity formation, friendships with peers, and autonomy support in risk management are identified as important topics in supporting this group.

Providing person-centred care to older people with intellectual disabilities during the COVID-19 pandemic: experiences of direct support workers.

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.

Using Concept Mapping to Explore the Perspectives of People with Mild to Borderline Intellectual DisabilitiesToward Sexual Health.

People with mild to borderline intellectual disabilities face many barriers toward their sexual health. To promote sexual health and overcome these barriers, they need individualized forms of sexuality support and education. To align sexuality support and education insight is needed on their understanding of sexual health. The current paper aims to provide greater insight in what sexual health consists of according to people with mild to borderline intellectual disabilities. Nine people with a mild to borderline intellectual disability participated in a concept mapping procedure, consisting of brainstorming, sorting, and ranking the statements. The resulting clusters and concept map were interpreted by an expert group. Analysis resulted in five clusters which participants considered important for their sexual health. According to people with mild to borderline intellectual disability cluster pertaining to romantic relationships and sexual socialization were the most important. These were followed by clusters on sexual health and lastly sexual selfhood. These results have implications for the development of sexuality support and education, as well as further research. Supplementary Information: The online version contains supplementary material available at 10.1007/s11195-023-09796-w.

Experiences of therapists conducting psychological assessments and video conferencing therapy sessions with people with mild intellectual disabilities during the COVID-19 pandemic.

Background. Due to the restrictive measures introduced to tackle the COVID-19 pandemic, therapists working with people with mild intellectual disabilities have had to use video conferencing to continue to conduct their psychological assessments and therapy sessions. This qualitative study explored therapists' experiences of using video conferencing during the initial lockdown period in the Netherlands. Method. In total, seven therapists working at a service organisation supporting people with intellectual disabilities participated in this qualitative study (M = 34.4 years; SD = 6.0, range: 26-42). The therapists documented their experiences via audio recordings, which were subsequently analysed using thematic analysis. Results. Five themes emerged: 1) An immediate transition to virtual working; 2) Developing virtual ways to support service users in both coping with COVID-19 related stress and with continuing therapy; 3) Lacking the appropriate equipment; 4) Limitations in virtually attuning to people with mild intellectual disabilities; and 5) Unforeseen opportunities for distance-based psychological assessments and therapy. Conclusions. This study provides valuable insights into the experiences of therapists using video conferencing to support people with mild intellectual disabilities during the COVID-19 pandemic. These insights can help inform clinical practice with respect to the use of video conferencing for psychological assessment and therapy with people with mild intellectual disabilities.

The Experiences of Outreach Support Staff Working with People with Mild Intellectual Disabilities during Different Stages of the COVID-19 Pandemic in the Netherlands: A Qualitative Study.

The COVID-19 pandemic profoundly impacted the work of professionals who support people with intellectual disabilities. This study aimed to explore the experiences of outreach support staff supporting people with mild intellectual disabilities in the Netherlands during different phases of the pandemic between March 2020 and May 2021. Overall, seven outreach support staff from three intellectual disability services participated in this qualitative study. Using semi-structured interviews, participants were interviewed on three occasions between December 2020 and May 2021. A thematic analytical framework was used to analyze the interviews. Four overarching themes could be distinguished based on the data: (1) balancing between one's professional and personal life; (2) vaccination as both a stress reducer and a source of agitation; (3) service users: vulnerable versus resilient; and (4) contact with colleagues and service users. These themes provided valuable insights into the experiences of outreach support staff during different phases of the pandemic, both in the enduring impact of the pandemic and its measures on support staff, as well as in terms of how the pandemic and its preventive measures impacted their profession.

Support needs of older people with intellectual disabilities: An exploratory study among psychologists in the Netherlands.

BACKGROUND: Information regarding the common-daily support needs of older people with intellectual disabilities remains scarce, despite the necessity of such knowledge to the provision of adequate support. This exploratory study aims to identify the most important support needs. METHOD: A mixed-method design was conducted, in which 11 semi-structured interviews were held with psychologists to gain insight into the support needs of older people with intellectual disabilities. RESULTS: The data provide an overview of the support needs of older people with intellectual disabilities in all quality-of-life (QoL) domains. Physical well-being, emotional well-being, interpersonal relationships and self-determination were identified as the most important domains for older people with intellectual disabilities. CONCLUSIONS: The findings of this study may guide the development of a specific training for support staff and constitute a valuable contribution to raising awareness among support staff concerning the broad range of support needs existing among older people with intellectual disabilities.

Long-term social restrictions and lack of work activities during the COVID-19 pandemic: impact on the daily lives of people with intellectual disabilities.

PURPOSE: Lockdowns due to the Covid-19 pandemic may have had a disproportionate impact on the daily lives of people with intellectual disabilities. Many of them had to deal with limited social contacts for an extended period. This study explores in depth how people with intellectual disabilities in the Netherlands experienced their daily lives, in particular due to lack of access to regular work activities. MATERIALS AND METHODS: Eight participants with intellectual disabilities were interviewed. Interpretative Phenomenological Analysis (IPA) was employed in conducting and analysing interviews. RESULTS AND CONCLUSIONS: Analysis yielded three overarching themes that are conceptually linked. Participants experienced a prolonged lack of social connections that resulted in experiences of social isolation and feelings of loneliness. This led to different kinds of struggles: either internal struggles involving negative thoughts or depressive feelings, or a perceived threat to their autonomous position in society. Meanwhile participants had to sustain their sense of self-worth in the absence of work activities. The findings emphasise the importance of social opportunities through the access to work activities for people with intellectual disabilities. Interventions are suggested to help reverse the increased social inequalities and enhance rehabilitation via work activities for people with intellectual disabilities.IMPLICATIONS FOR REHABLITATIONMore awareness may be raised among authorities, employers and the general public about the significant value people with intellectual disabilities attribute to meaningful social connections, in particular through work activities.Also, more awareness may be raised about the potential adverse effects of the loss of work activities and social connections on the quality of life of people with intellectual disabilities.Providing social support to others may help people with intellectual disabilities to construct social valued roles, either in or outside the work situation.Professionals and employers can support people with intellectual disabilities to find opportunities to provide social support to others.It is important to invest in sustainable and innovative post-pandemic community participation initiatives and particularly in accessible post-pandemic employment support, for example by organising paid in-company training placements.It is essential that professionals support people with intellectual disabilities to enhance their sources of resilience and coping strategies, that may have diminished as a result of the pandemic.

Public Stigmatization of People With Intellectual Disability During the COVID-19 Pandemic.

This study aimed to examine the level of discrimination against people with intellectual disability during COVID-19, and assessed stereotypes, levels of familiarity with people with intellectual disability, and personal experiences with COVID-19 as potential correlates. A cross-sectional study was conducted using a large sample from the Dutch population (n = 1,797). Salient stereotype factors of people with intellectual disability were "friendly" and "in need of help," but not "give nuisance." Those respondents who were unfamiliar with people with intellectual disability in real life demonstrated higher levels of discrimination, perceiving them as more of a nuisance and as being less in need of help, in comparison to those who were more familiar. People with intellectual disability were judged by an ambivalent set of stereotypes during the COVID-19 pandemic that were in line with pre-COVID-19 findings and as such seemed to be fairly persistent and robust. There is a pressing need to both raise awareness of stereotypes towards and discrimination against people with intellectual disability via advocacy and education, and to facilitate positive encounters.

A thematic analysis into the experiences of people with a mild intellectual disability during the COVID-19 lockdown period.

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.

Setting up a new team of support staff for people with mild intellectual disability or borderline intellectual functioning and severe challenging behaviour: A concept mapping study.

BACKGROUND: Studies about teams of staff supporting people with intellectual disability have focused on team performance of existing teams. This study aimed to examine important factors in the process of setting up a new team of support staff. Specifically, we considered the process for a team that supports service users with mild intellectual disability or borderline intellectual functioning who display severe challenging behaviour from the orthopedagogical perspective (i.e., with a focus on contextual factors). METHOD: Three participant groups (service users, support staff, and professionals supporting a team) participated in a concept mapping procedure, including generating statements in interviews and focus groups, sorting, and rating. An expert group interpreted the results. RESULTS: Important factors to one or more groups were: service users and support staff getting acquainted early, team safety, social support, a shared vision, and a positive reputation of the new home. CONCLUSIONS: Four core outcomes were addressed that may help service organisations to provide an environment matching the needs of service users who show severe challenging behaviour from the start.

Meaningful moments of interaction with people with profound intellectual disabilities: Reflections from direct support staff.

BACKGROUND: High-quality, affective relationships are built on meaningful moments of interaction, which are challenging for support staff to establish with people with profound intellectual disabilities. Therefore, we explored what makes a moment of interaction meaningful to support staff and what circumstances facilitate meaningful moments of interaction taking place. METHOD: Five direct support staff took part in unstructured, in-depth interviews. The interviews were analysed using interpretative phenomenological analysis (IPA). Member checks were also conducted. RESULTS: Support staff experienced moments of interaction as meaningful because they felt a connection with a person with profound intellectual disabilities and/or they had the feeling of being meaningful for this person. Staff-related and contextual circumstances facilitating meaningful moments of interaction to take place were described. CONCLUSIONS: Meaningful moments of interaction are highly valued by support staff, who believe these moments are valued by persons with profound intellectual disabilities as well. Implications for daily practice are described.

The General Public's Perceptions of How the COVID-19 Pandemic Has Impacted the Elderly and Individuals with Intellectual Disabilities.

This study examined the general public's perceptions of how the COVID-19 pandemic has impacted the elderly and people with intellectual disabilities as well how these perceptions relate to people's level of familiarity and contact quality with these groups. A cross-sectional survey was administered to a sample of the Dutch population (n = 1458 and n = 1761, comprising questions related to the elderly and people with intellectual disabilities, respectively). The general public was found to be generally aware of the deleterious impact of the pandemic upon the elderly and people with intellectual disabilities. Specifically, the respondents reported that both groups' quality of life, physical and mental health, and quality and frequency of social contact was lower than it was prior to COVID-19, in addition to perceiving them as lonelier and less self-reliant. Notably, the impact on the elderly was considered to be greater than that on people with intellectual disabilities. Furthermore, those who had no familiarity with people with intellectual disabilities in real life perceived the impact to be lower than those who had a greater degree of familiarity. These findings have important implications, both for increasing awareness of the pandemic's negative impact on these vulnerable groups and in terms of sufficiently addressing their specific needs and concerns. The findings also underscore that, particularly during the COVID-19 pandemic, it is important to increase the visibility of groups who already relied more on help and support from others in society prior to the pandemic, such as the elderly and people with intellectual disabilities, via, among other things, self-advocacy, education, and enhanced intergroup contact, in order to be able to sufficiently address their needs during these challenging times.

Perspective of relatives on restrictions applied to their family members with moderate intellectual disability.

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.

Attitudes towards sexuality and related caregiver support of people with intellectual disabilities: A systematic review on the perspectives of people with intellectual disabilities.

BACKGROUND: Sexual health remains at risk for people with an intellectual disability. Attitudes towards sexuality, its support and education have an important role in promoting sexual health. The current review aims to provide an overview of the current research on supportive and restrictive attitudes towards sexuality and its support of people with intellectual disabilities themselves. METHOD: A systematic review was conducted, searching across eight databases. The quality of the studies was assessed with the Mixed-Method Appraisal Tool. RESULTS: Six themes emerged from the data: sexual behaviour, sexual identity, intimate relationships, barriers to sexual expression, sex education and support by caregivers. Supportive and restrictive attitudes were reported throughout. CONCLUSIONS: Attitudes regarding sexuality of people with intellectual disabilities are heterogeneous and people with intellectual disabilities seem to be able to express their sexual desires, needs and attitudes. Findings allow for improved individual support and in-depth research questions.