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.
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.
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.
Partly due to a lack of evidence-based methods to support people with intellectual disability (ID) and challenging behavior, their needs are often poorly met. One way to generate rapid evidence is to systematically describe and monitor interventions that are considered to be "good practice"-to develop evidence based on practical knowledge. This study describes the Dutch practice-based intervention Triple-C (Client, Coach, Competence). The intervention was developed in practice to support people with severe ID to borderline functioning and challenging behavior. The practice-based nature of Triple-C means that many of the professionals' actions or activities are often underpinned by their implicit knowledge about the intervention they are delivering. Consequently, as the emphasis is on practice, the professionals can find it difficult to articulate how the intervention is operationalized and positive change achieved. This study aimed to assess the practical knowledge of Triple-C professionals and to develop an understanding of the mechanisms of change for Triple-C to improve understanding and to inform future research about the intervention. Through an iterative process, a logic model was developed to describe the intervention and its underlying assumptions. The development of the logic model was shaped using interviews with the founders, focus groups with support staff, psychologists, managers and members of the board of a service provider, and the analysis of published accounts of the Triple-C intervention. Data gathered from these sources were analyzed using content analysis. The logic model of the Triple-C intervention provides insight into the key elements of the approach, such as the need for unconditional supportive relationship and carrying out meaningful activities. Moreover, the potential relationship with existing evidence-based interventions such as Positive Behavioral Support and Active Support are described. Defining the underlying logic of a practice-based intervention like Triple-C is an important first step toward producing an evidence base for interventions developed from clinical practice.
Even though family plays a significant role in the lives of people 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.
Background Family is recognised as an important context for the self‐development of young adults in emerging adulthood, although very little research has addressed the perspective of young people with intellectual disability about their families by using self‐report. This study examined how emerging adults with mild intellectual disability define their family support networks, compared with definitions of students without intellectual disability, within a social capital theoretical framework. Methods Fifty‐three participants with mild intellectual disability and 53 students without intellectual disability were interviewed individually using the Family Network Method – Intellectual Disability (FNM‐ID). Data from the FNM‐ID relate to key social network measures on how individuals define their family groups, and how they perceive existing supportive relationships within their families. Participants with mild intellectual disability and students were compared on the FNM‐ID social network measures. Results Participants with mild intellectual disability reported fewer family members who they considered significant to them than students without intellectual disability. They were less likely to include peers (i.e. friends and partners) and siblings in their significant family networks, had fewer relationships with family members in which they received or gave support, had fewer reciprocal support relationships and had a less central position in their family network. Discussion The family‐based social capital of emerging adults with mild intellectual disability differed from that of students without intellectual disability. They may remain more dependent on their natural family for emotional support as their supportive networks have not necessarily made the transition to networks with emotionally close peer relationships.
Background: The Family Network Method-Intellectual Disability (FNM-ID) was used to compare perspectives of people with mild intellectual disability and their support workers on family networks of people with intellectual disability. Method: 138 participants with mild intellectual disability and support workers were interviewed, using the FNM-ID. Paired t-tests were used to examine differences in perspectives. Multiple regression analyses were used to examine divergence in perspectives. Results: People with mild intellectual disability perceived their family networks to be larger and to provide more support than support workers did. Living in a residential setting and having higher levels of externalising behaviour were associated with differences in perspectives, whereas a higher level of internalising behaviour was associated with more similar views. Conclusions: Individuals with intellectual disability and support workers are unlikely to provide the same information about family networks of people with mild intellectual disability. Behavioural and emotional problems were associated with divergence in perspectives.
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.
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