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.

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.

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.

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.

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.

Homeward bound: Exploring the motives of mothers who brought their offspring with intellectual disabilities home from residential settings during the COVID-19 pandemic.

BACKGROUND: At the start of the COVID-19 pandemic, some parents in the Netherlands decided to bring their offspring with intellectual disabilities, who normally live in residential care, home. The present study explored why the mothers decided to bring their offspring home. METHOD: Interviews were carried out with seven mothers of adults with intellectual disabilities. An interpretative phenomenological approach was used to establish in-depth accounts of the mothers' experiences. RESULTS: The analysis yielded three overarching themes: (a) Families are indispensable; (b) the complex role of being a mother of a child with intellectual disabilities; and (c) Who is looking out for our offspring during COVID-19? CONCLUSIONS: The mothers experienced a strong sense of wanting to do what was best for their offspring with intellectual disabilities during COVID-19. The study provides insight into why mothers remain involved in the care for their offspring and the complexity of navigating lifelong care responsibilities.

Perceptions of people with mild intellectual disability and their family members about family-based social capital in the Netherlands.

Families play an important role in the lives of people with intellectual disability as they do for everyone. However, little research has addressed the views of people with intellectual disability about their families by using self-report. Individual family members may hold different views about their family relationships. Therefore, we used a social capital theoretical perspective to examine (a) how perceptions of people with mild intellectual disability (MID) about their family support networks compare to those of their family members and (b) what factors are associated with any diverging perceptions. Randomly selected participants with MID (n = 111) and their family members (n = 111) were interviewed individually at their homes using the Family Network Method-Intellectual Disability (FNM-ID). The FNM-ID examines how people define their family groups and how they perceive existing supportive relationships within this group. The findings showed that participants with MID perceived that they had somewhat denser family networks (i.e., bonding social capital) than family members perceived them to have and were more likely to report bridging social capital. They reported more relationships that involved them providing support to family members. This difference in estimation was greater when the participant with MID displayed higher levels of externalizing behaviour problems. They also perceived more reciprocity in their relationships with family. No differences were found in the estimated numbers of significant family members and relationships in which support was received. It is concluded that people with MID and their family members have different perceptions on several aspects of the family support network. Family professionals and services should seek the views of people with intellectual disability and their family members when carrying out assessments or organizing supports.

Psychosocial interventions for older people with intellectual disabilities and the role of support staff: A systematic review.

BACKGROUND: The life expectancy of people with intellectual disabilities has increased. The implications of ageing have resulted in changes in their support needs and challenges to support staff. Access to evidence based strategies for support staff providing care to elderly with intellectual disabilities remains scarce. A systematic review was conducted to provide an overview of available psychosocial interventions. METHODS: Four databases were searched and assessed according to the PRISMA guidelines. A narrative, integrative method of analysis was conducted to synthesise quantitative and qualitative data. RESULTS: The 36 studies included in the review reported on interventions aimed at either identifying and meeting the needs or perceptions of older individuals or at improving their behaviour and skills. Furthermore, the role of support staff in the implementation of interventions was either active, assisting or undefined. CONCLUSIONS: This overview of studies could contribute to the existing body of knowledge and help to optimise psychosocial support for a growing population.

Heart rate and skin conductance associations with physical aggression, psychopathy, antisocial personality disorder and conduct disorder: An updated meta-analysis.

The associations between physiological measures (i.e., heart rate and skin conductance) of autonomic nervous system (ANS) activity and severe antisocial spectrum behavior (AB) were meta-analyzed. We used an exhaustive partitioning of variables relevant to the ANS-AB association and investigated four highly relevant questions (on declining effect sizes, psychopathy subscales, moderators, and ANS measures) that are thought to be transformative for future research on AB. We investigated a broad spectrum of physiological measures (e.g., heart rate (variability), pre-ejection period) in relation to AB. The search date for the current meta-analysis was on January 1st, 2020, includes 101 studies and 769 effect sizes. Results indicate that effect sizes are heterogeneous and bidirectional. The careful partitioning of variables sheds light on the complex associations that were obscured in previous meta-analyses. Effects are largest for the most violent offenders and for psychopathy and are dependent on the experimental tasks used, parameters calculated, and analyses run. Understanding the specificity of physiological reactions may be expedient for differentiating between (and within) types of AB.