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.

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.

The experiences of psychologists working with people with intellectual disabilities during the COVID-19 crisis.

BACKGROUND: The aim of this study was to explore the experiences of psychologists working with people with intellectual disabilities during the initial stage of the COVID-19 lockdown in the Netherlands. METHOD: Five psychologists, who were affiliated with three intellectual disability services, participated in this descriptive qualitative study. Overall, they recorded 22 audio messages during the period under examination, which were analysed using thematic analysis. RESULTS: Three themes were identified: (a) Working from home; (b) Adapting to the new reality; and (c) Advising and coaching support staff. CONCLUSIONS: This study provides critical insights into the experiences of psychologists working with people with intellectual disabilities during the initial stage of the COVID-19 lockdown. These insights can help policymakers and practitioners to prepare for either a potential second wave of COVID-19 or a future pandemic.

People with intellectual disabilities living in care facilities engaging in virtual social contact: A systematic review of the feasibility and effects on well-being.

BACKGROUND: During the initial phase of the COVID-19 pandemic, many people with disabilities living in home care facilities could not receive visitors. The use of virtual social contact has been recommended by health authorities. This systematic review examined the scientific evidence of the use and feasibility of information and communication technology (ICT) for social contact by people with intellectual disabilities living in care facilities, and potential effects on well-being. METHODS: Five databases were searched using traditional systematic screening and machine-learning supported screening. Findings are presented in a narrative synthesis using thematic analysis. RESULTS: Nine studies were included. We described three themes: means of ICT used for social contact; effects on well-being; and benefits, barriers, and preconditions. CONCLUSIONS: Engaging in virtual social contact may be feasible for people with severe to mild intellectual disabilities, but there is little concrete evidence that this can be used as an alternative for in-person contact.

Experiences and needs of direct support staff working with people with intellectual disabilities during the COVID-19 pandemic: A thematic analysis.

BACKGROUND: The present study aimed to explore the experiences and needs of direct support staff during the initial stage of the COVID-19 lockdown in the Netherlands. METHOD: Overall, eleven direct support staff were recruited from five intellectual disability services to participate in this descriptive qualitative study. They recorded 34 audio messages during the considered period. Thematic analysis was used to analyse these audio recordings. RESULTS: Four themes emerged: (1) Emotional impact, which pertained to various emotions they experienced in their work; (2) Cognitive impact, which referred to challenges and changes they had undergone in their work; (3) Practical impact, which centred on the practical impact of the pandemic on their work; and (4) Professional impact, which concerned their experiences with other professionals. CONCLUSIONS: This study provides valuable insights into the experiences and needs of direct support staff during the COVID-19 pandemic, which, in turn, can help inform practice in preparation for a second wave of COVID-19 or another future pandemic.

Psychological eHealth interventions for people with intellectual disabilities: A scoping review.

BACKGROUND: The use of eHealth, which has accelerated in the wake of the COVID-19 pandemic, could contribute to the access to tailor-made psychological interventions for people with intellectual disabilities. METHOD: A scoping review was conducted on peer-reviewed studies between 1996-2019. RESULTS: Thirty-three studies reported on the use of psychological eHealth interventions focused on mental health problems and/or challenging behaviour. The vast majority of these studies reported on interventions that were delivered at the individual level. The context in which these interventions were delivered varied, primarily ranging from the home setting to residential settings, as well as day or activity centres and schools. The studies described various types of interventions: telehealth interventions, computerized cognitive behavioural therapy, and interventions focused on (social) learning principles targeting challenging behaviour. CONCLUSIONS: eHealth provides new opportunities for both therapists and lay-therapists to deliver psychological interventions. Future studies should focus on the effectiveness of psychological eHealth interventions.

eHealth in the support of people with mild intellectual disability in daily life: A systematic review.

BACKGROUND: eHealth has recently made rapid progress in care, support and treatment. However, studies on the use of eHealth to support people with a mild intellectual disability in daily life are limited. A systematic review was conducted to provide an overview of this use of eHealth. METHODS: Seven databases were searched for relevant studies and assessed according to the PRISMA guidelines. Descriptive analyses were deployed using the Matching Person to Technology model to evaluate the key areas contributing to successful eHealth use. RESULTS: Most of the 46 studies included were small-scale case studies and focused on using eHealth to acquire daily living skills and vocational skills. In addition, several studies focused on eHealth use for self-support in daily living, and three studies focused on remote professional support. CONCLUSIONS: eHealth offers opportunities to support people with mild intellectual disability in various different contexts of daily life. Scientific research on this topic is in its early stage, and further high-quality research is needed.

Autonomy support in people with mild-to-borderline intellectual disability: Testing the Health Care Climate Questionnaire-Intellectual Disability.

BACKGROUND: Autonomy support in people with intellectual disability (ID) is an important yet understudied topic. Psychometrically sound instruments are lacking. This study tested the factor structure and reliability of an instrument for assessing the extent people with intellectual disability perceive their support staff as autonomy supportive. METHOD: In a single wave, 185 adults with mild-to-borderline intellectual disability filled in an adapted version of the Health Care Climate Questionnaire (i.e., HCCQ-ID). Forty of them participated in a second wave to determine test-retest-reliability. The HCCQ-ID consists of 15 items on a 5-point Likert scale. RESULTS: The expected one-factor structure was found. Internal consistency (α = 0.93) and test-retest reliability (r = .85) were good. The score distribution was skewed towards high satisfaction. CONCLUSIONS: The factor structure and reliability of the HCCQ-ID were supported for people with mild-to-borderline intellectual disability. Given the homogeneous factor structure and the high reliability, the number of items may be further optimized.

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.

Modification of motivational interviewing for use with people with mild intellectual disability and challenging behaviour.

BACKGROUND: Motivational interviewing is a promising method to increase treatment motivation for people with mild intellectual disability and challenging behaviour. The purpose of the present study was to identify how professionals could adapt motivational interviewing techniques for use with clients. METHOD: We conducted semistructured qualitative interviews and focus groups with 26 clients, parents, and professionals. A general inductive approach led to the identification of multiple core themes. RESULTS: The authors recommend several modifications to accommodate motivational interviewing for use with clients: adapt to language level, adjust to cognitive abilities, and control for social desirability of responding. In addition, certain characteristics of professionals were also found to be critical for effective motivational interviewing: trustworthiness, engagement, acceptance, empathy, and honesty. CONCLUSIONS: Concrete recommendations for the adaptation of the motivational interviewing techniques for use with people with mild intellectual disability and challenging behaviour are identified. Certain characteristics of professionals are also critical for maximising the treatment motivation of clients.

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.

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.

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.

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.

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.

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.

Autonomy Support, Need Satisfaction, and Motivation for Support Among Adults With Intellectual Disability: Testing a Self-Determination Theory Model.

The tenets of self-determination theory as applied to support were tested with structural equation modelling for 186 people with ID with a mild to borderline level of functioning. The results showed that (a) perceived autonomy support was positively associated with autonomous motivation and with satisfaction of need for autonomy, relatedness, and competence; (b) autonomous motivation and need satisfaction were associated with higher psychological well-being; (c) autonomous motivation and need satisfaction statistically mediated the association between autonomy support and well-being; and (d) satisfaction of need for autonomy and relatedness was negatively associated with controlled motivation, whereas satisfaction of need for relatedness was positively associated with autonomous motivation. The self-determination theory provides insights relevant for improving support for people with intellectual disability.

[Toilet training in mental retardation; approach to diurnal enuresis in a 12-year-old boy with hemiparesis]. / Zindelijkheidstraining bij verstandelijk beperkten; aanpak van broekplassen bij een 12-jarige hemiparetische jongen.

A 12-year-old boy with hemiparesis, severe mental retardation, reduced mobility and behavioural problems was not yet toilet trained. He was successfully trained using a behavioural treatment. The training program was based on gradual prolongation of urine retention, the introduction of behaviour restrictions, rewards for using the toilet and overcorrection using repeated exercises if diurnal enuresis occurred. A third of 4- to 18-year-olds with a cerebral palsy do not have diurnal bladder control at the age of 6, in contrast to 1-3% in the general population. An important cause of this difference is the believe that bladder control is dependent on the time of development of bladder control muscles and that it cannot be affected by external methods. This case study shows that even in a relatively older and severely and multiply disabled boy diurnal enuresis can be solved.