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

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

eHealth in support for daily functioning of people with intellectual disability:Views of service users, relatives, and professionals on both its advantages and disadvantages and its facilitating and impeding factors

Background: The use of eHealth in support for daily functioning of service users with intellectual disability (ID) is a rather unexplored domain. Therefore, the current study identified the a) level of familiarity, b) advantages/disadvantages, and c) facilitating/impeding factors for the use of eHealth in support for daily functioning of people with ID according to service users, relatives, and professionals. Method: Four focus groups and one semi-structured qualitative interview were conducted. Results: Participants were familiar with numerous eHealth applications. Benefits were related to service users (e.g., increased independency) and relatives/professionals (e.g., providing more efficient support). Adequate informing and involving all stakeholders and centrally positioning the needs and possibilities of service users were reported as important facilitators. Contrary, impeding factors were malfunctioning Internet, expenses of eHealth, and lack of proper IT-support. Conclusions: The results provide imperative information for future eHealth implementations and to direct its use more specifically to people with ID

Impact of infection outbreak on long-term care staff:A rapid review on psychological well-being

Context: Older people and people with an intellectual disability who receive long-term care are considered particularly vulnerable to infection outbreaks, such as the current Coronavirus Disease 2019. The combination of healthcare concerns and infection-related restrictions may result in specific challenges for long-term care staff serving these populations during infection outbreaks. Objectives: This review aimed to: (1) provide insight about the potential impact of infection outbreaks on the psychological state of healthcare staff and (2) explore suggestions to support and protect their psychological well-being. Method: Four databases were searched, resulting in 2,176 hits, which were systematically screened until six articles remained. Thematic analysis was used to structure and categorise the data. Findings: Studies about healthcare staff working in long-term care for people with intellectual disabilities were not identified. Psychological outcomes of healthcare staff serving older people covered three themes: emotional responses (i.e., fears and concerns, tension, stress, confusion, and no additional challenges), ethical dilemmas, and reflections on work attendance. Identified suggestions to support and protect care staff were related to education, provision of information, housing, materials, policy and guidelines. Limitations: Only six articles were included in the syntheses. Implications: Research into support for long-term care staff during an infection outbreak is scarce. Without conscious management, policy and research focus, the needs of this professional group may remain underexposed in current and future infection outbreaks. The content synthesis and reflection on it in this article provide starting points for new research and contribute to the preparation for future infection outbreaks

Impact of infection outbreak on people with intellectual disabilities:A scoping review

Background:  One would assume that infection outbreaks such as the COVID-19 pandemic have a deleterious effect upon the physical, mental, and/or social functioning of people with intellectual disabilities (ID).  Methods:  A systematic search of four databases produced 18 articles. General information pertaining to the topics under consideration, information related to infectious diseases and ID were extracted.  Results:  All but one of the studies investigated the impact of infection outbreaks on the physical functioning of people with ID. Although in some instances certain studies briefly reflected on the impact of infection outbreaks on mental or social functioning, there was no empirical data available.  Conclusions:  There is scarce scientific knowledge on the impact of infection outbreaks on the mental and social functioning of people with ID. This underscores the exigency for further psychosocial research to both explore the impact of infection outbreaks and develop strategies to deal with them in the future

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

Integrated emotion-oriented care for older people with ID:Defining and understanding intervention components of a person-centred approach

An increase in descriptive evidence regarding person‐centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well‐being and quality of life. A specific Dutch example is the Integrated Emotion‐Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in‐depth understanding of the use of these components in the day‐to‐day support of older people with ID. A content analysis of five key documents was carried out. Five semi‐structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus‐group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion‐Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion‐Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed

Support needs of parents with intellectual disabilities:Systematic review on the perceptions of parents and professionals

This review aimed to examine the perceptions of parents, professionals and informal network members regarding support needs of parents with intellectual disabilities (ID). In accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement, five databases were systematically searched and 19 qualitative studies were reviewed using thematic analyses. No data were available on the perceptions of the informal social network. Data on parents and professionals were categorized in four themes (type of support, sources of support, conditions of successful support and characteristics of support members). Data from professionals did not refer to emotional support needs or to the potential support of volunteers, friends and neighbours. Data from parents indicated a preference to be treated as ‘full’ parents, whereas professionals tended to focus on disabilities of parents. Results and implications contribute to insights into support needs of parents with ID from different perspectives and may help identify new entry points to improve future interventions and working alliances

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

Social capital and the reciprocal nature of family relationships : the perspective of individuals with mild intellectual disability

Even though family plays a significant role in the lives of individuals with intellectual disability, little research has included their own views about their families. This study examined how 138 people with mild intellectual disability describe their family group, with a focus on the reciprocal nature of the emotional support in relationships with family members. Participants reported “significant” family members beyond the nuclear family, and parents were seen as the main provider of support. Only half of participants had a support relationship with siblings and just 13% of participants reported partners. About 30% of support was reciprocal, and reciprocity varied greatly with the types of family connection (e.g., siblings, peers). Implications for future research as well as practice are discussed