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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

A sector-wide response to national policy on client-centred care and support: a document analysis of the development of a range of instruments to assess clients' experiences in the care and support for people with (intellectual) disabilities.

BACKGROUND: Client-centred care serves as the foundation for healthcare policy. Indeed, various instruments for assessing clients' experiences of care and support are increasingly used to provide insights into the quality, and client-centred nature, of the care and support provided, which, in turn, aids the development of subsequent improvements. The unique characteristics of care and support for people with intellectual disabilities (ID), such as the need for both lifelong and life-wide care and support across all aspects of clients' lives, led to an initiative within Dutch ID care to jointly develop a range of instruments to assess the experiences of clients receiving ID care and support. Individual clients' experiences and suggestions for improvement, which are embedded in clients' care plan cycles, constitute the foundation of this Range of Instruments. This paper provides a unique, bottom-up, exhaustive account of the process of developing the Range of instruments used to assess the experiences of clients in the field of Dutch ID care. METHODS: Relevant documents at three levels (i.e. 1) national documents, such as policy papers and governmental reports, 2) documents and reports from the Dutch Association of Healthcare Providers for People with Disabilities (VGN) along with minutes from the meetings of the expert Committee who assessed the instruments, and 3) correspondence between the Committee and developers as well as the forms used in the assessment process for each instrument) were qualitatively analysed by two researchers who had no affiliation with the development of the Range of instruments used to assess clients' experiences in ID care and support. All of the documents were inductively coded using a thematic analytical approach. Informants who were either currently or previously involved in the development of these instruments were asked to provide clarification over the documents themselves and to explain the context in which they were produced. RESULTS: The development of the range of instruments can be classified into four phases, namely: 1) supporting the bottom-up development of initiatives to assess clients' experiences, 2) focusing on learning and further development, 3) stimulating exchange between the developers and users of the instruments and the Committee responsible for assessing them, and 4) further development in response to the changing times and new landscape. CONCLUSIONS: The range of instruments were found to be appropriate for a variety of clients in ID care and support, specifically in terms of assessing their individual experiences and gaining insight into their suggestions for improvement, and effective in terms of collaboratively improving the quality of ID care and support. In so doing, these instruments potentially provide an avenue through which clients' experiences can be embedded in the process of ID care and support. Other specific features in the development of these instruments, namely their incremental adoption, ongoing evaluation and strong practice orientation, were also found to be suitable for other care contexts' attempts to respond to the top-down policy objectives of client-centeredness and translating outcomes into direct care practice.

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.

The value of competitive employment: In-depth accounts of people with intellectual disabilities.

BACKGROUND: Increasing the societal participation of people with intellectual disabilities via competitive employment requires a full understanding of what this means to them. This paper aims to provide an in-depth examination of the lived experiences of people with intellectual disabilities in competitive employment. METHOD: Interviews were conducted with six participants with mild intellectual disability or borderline functioning and good verbal communication skills. Interviews were analysed according to the guidelines of interpretative phenomenological analysis (IPA). Member checks were conducted. RESULTS: Analysis yielded three main themes: (a) Building on my life experiences, (b) My place at work and (c) Being a valuable member of society, like everyone else. CONCLUSIONS: Competitive employment could make a substantial contribution to the sense of belonging to society and quality of life of people with intellectual disabilities. Nevertheless, they must cope with stigma-related obstacles and feelings of being dependent on others in the work environment.

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.

Family network typologies of adults with intellectual disability: Associations with psychological outcomes.

BACKGROUND: Based on self-reported social capital, different typologies of family networks of people with intellectual disabilities were examined. Associations between behavioural and emotional problems or well-being and typologies were investigated. METHOD: 137 participants with mild intellectual disability were interviewed using the Family Network Method-Intellectual Disability to assess their emotionally supportive family relationships. Data on participants' well-being and behavioural and emotional problems were also gathered. Latent class analysis was used to identify family typologies based on social network measures. RESULTS: Four distinguishable typologies were identified, two supportive and two less supportive. A small association was found with behavioural and emotional problems and one of the supportive typologies. Associations with constructs of well-being were found for both supportive and less supportive typologies. CONCLUSIONS: A variety of family types were found, with implications for sensitive professional support.

Love, Intimacy and Sexuality in Residential Dementia Care: A Client Perspective.

Objectives: Residential care facility (RCF) residents with dementia are highly dependent on care. This can influence their experience of intimacy and sexuality. The perspective of residents and their spouses with regard to love, intimacy, and sexuality were explored and analyzed.Methods: The study was designed using the IPA methodology. Eight in-depth interviews were held with 12 participants: four couples and four individual residents with dementia.Results: Varied stories were shared; however, dementia had a great impact on all of them. Love, intimacy, and being together were considered fundamentally important by both couples and individual participants, although profound dilemmas were encountered. While only one couple experienced physical sexuality within the RCF, other participants reported that love and being intimate were the most important aspects of their current relationship. Regarding the possibility of fulfilling their needs within the RCF, a secure feeling of privacy was considered to be important, but was absent at the time of the survey.Conclusions: Although challenging to appropriately facilitate at RCFs, love, intimacy, and sexuality are still important aspects for residents with dementia and their spouses.Clinical implications: This study addresses these dilemmas and ads to the normalization of love, intimacy, and sexuality within RCF settings; the findings will hopefully improve the wellbeing of residents with dementia and that of their spouses.