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

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 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

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 rehabilitation: More 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

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

Reducing restrictive measures in complex long-term care for people with intellectual disabilities:Implementation interventions through the lens of normalisation process theory

BACKGROUND The multi-disciplinarity of long-term care for people with intellectual disabilities makes organisations seek stability and predictability, complicating implementing innovations. Interventions to implement a method for reducing restrictive measures were analysed through the lens of Normalisation Process Theory to understand the social mechanisms at play. METHODS Process notes, collected during a trial in which a method to reduce restrictive measures was implemented, were analysed guided by implementation interventions defined by Cochrane Effective Practice and Organisation of Care Review Group. These interventions were mapped to social mechanisms of Normalisation Process Theory. RESULTS Implementation interventions were widely used in which clients’ perspectives were expressed (client-related-interventions), and consensus processes were held with care professionals. These interventions initiated NPT’s social mechanisms’ Coherence, Cognitive Participation and Collective Action. CONCLUSIONS The emphasis on consensus and clients’ perspectives when methodically reducing restrictive measures reflects some unique implementation challenges in long-term intellectual disability care

Satisfying basic psychological needs among people with complex support needs:A self-determination theory-guided analysis of primary relatives' perspectives

Background: The fulfilment of basic psychological needs (BPNs) is seen as an integral part of human self-determination, subjective wellbeing, and overall quality of life. However, the meaning of these psychological constructs for individuals with the most extensive support needs remains elusive. Methods: Primary relatives of nine people diagnosed with severe or profound intellectual and multiple disabilities were interviewed about their perceptions of autonomy, competence, and relatedness regarding their family member with complex care needs, and about the ways in which they tried to support their family member in fulfilling specific BPNs. The interview analysis followed a grounded theory with the sensitizing concepts approach. Results: The relatives assigned important meaning to the BPNs, providing insights into their subtle nature, their implicit drivers, and how they were experienced. The relatives also identified serious challenges in detecting, clarifying, and creating opportunities for BPNs. Conclusions: The themes in the relatives’ perspectives can be summarized into a conceptual framework that may contribute to better mutual understanding between people with complex care needs, their relatives, and healthcare providers

Measuring emotional support in family networks: Adapting the Family Network Method for individuals with a mild intellectual disability.

Informal supportive networks of individuals with intellectual disability have become increasingly important. The aim of this paper is to describe how the Family Network Method - Intellectual Disability (FNM-ID) offers a way to gather the perspective of people with mild intellectual disability on their family support. The FNM is designed to explore how individuals define their family contexts, and more specifically how they perceive existing supportive relationships in these contexts. By carefully piloting ways of questioning people with mild intellectual disability, systematic adaptations were made to the original FNM. Data obtained by the FNM-ID can be analysed using social network analysis. Thereby, the FNM-ID provides rich, theoretically significant information on emotional support in the family networks of individuals with mild intellectual disability. The FNM-ID is a useful and successfully adapted tool for other researchers and professionals to systematically explore the family support experiences of individuals with mild intellectual disability

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