Journal of Intellectual & Developmental Disability最新文献

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.

Background: The Developmental Behaviour Checklist (DBC) is an established, internationally used questionnaire for assessing behavioural and emotional problems among young people with developmental or intellectual disabilities (ID). The present study aims to evaluate the psychometric properties of its German teacher version (DBC-T).

Method: The German DBC-T was administered to 397 school staff members who reported twice on 1177 children and adolescents with ID over a period of 7-9 months. Data were analysed within an exploratory structural equation modelling framework.

Results: Our results supported the five-factor structure of the DBC-T and found good reliability for all scales. Analyses on the relationship of DBC-T scores with students' age, gender, and adaptive behaviour provided further evidence for the validity of the DBC-T.

Conclusions: Our study endorses the notion that the German DBC-T is an important instrument both for research and practice. Limitations and further directions are discussed.

Background: This study reports the findings from a Dutch study, exploring care workers' knowledge and perceptions of the online lives of adolescents with mild or borderline intellectual disabilities.

Method: Using an inductive research design 33 semi-structured interviews were conducted with care workers.

Results: Three themes were derived from the data: (1) The clients' online world is largely unknown to care workers. (2) The online world is a gateway to an inclusive and connected life. (3) The online world is a dangerous and challenging place.

Conclusion: Care workers have limited knowledge of clients' online lives. Care workers show ambivalence about the good and bad of the Internet for their clients. They acknowledge the possibilities of the Internet but mostly perceive it as a place of risk and challenge. Paradoxically, care workers report little experiences of incidents of online risks. Perceptional processes might help explain why this paradox exists.

Background: Adults with disabilities in low-income communities of colour are disproportionately affected by the COVID-19 pandemic.

Method: We interviewed 14 self-advocates with intellectual and developmental disabilities (IDD) to learn more about their experiences during the peak of infections, hospitalisations, and deaths in Los Angeles, between December 2020 and March 2021.

Results: A modified grounded theory analysis revealed major themes of family, making choices & going places, formal services, and employment, which are discussed in relation to the participants' sense of autonomy and access to goods and services.

Conclusions: Implications for practice include increased access and training for adults with IDD in computer skills to maintain social engagement with video conferencing, and to utilise grocery delivery services.

Background: People with severe to profound intellectual disabilities have particular needs for others to help them regulate stress. Such support may be hampered by difficulties in detecting and interpreting expressions of stress. This study aimed to describe and identify stress-related behaviours and sensitive, stress-regulating responses to these behaviours.

Method: Video recordings of psychotherapeutic interactions between four clients with severe intellectual disabilities and behavioural problems and two attachment therapists were analysed using a stepwise spiral of analysis approach. Stress-related behaviours were identified with a behaviour rating scale for arousal and valence.

Results: Distinct stress-related behaviours were subdivided into stress-specific, non-stress-specific, and client-specific behaviours. Additionally, examples of responsive behaviours to clients' expressions of varying arousal and valence were found.

Conclusions: A wide variety of expressions indicative of different levels of arousal were found, with few expressions specific for stress. The descriptions of responsive behaviours might support parents and caregivers in external stress regulation.

Background: Identifying the students with intellectual disabilities and deciding the required services would not be sufficient without parental involvement. The purpose of this study was to understand the perspectives of the parents of students with intellectual disabilities about the Guidance and Research Centres (GRCs) and reveal the parents' experiences at the GRCs.

Method: In this qualitative study, unstructured interviews were conducted. Twenty-one parents who had a child with an intellectual disability were asked about their experiences during their visit to the GRCs. Content analysis with an inductive approach was used to analyse the data.

Findings: Most of the parents reported problems regarding educational evaluation, and communication and collaboration. The participants provided their suggestions about evaluation procedures, professionalism, and institutional practices.

Conclusions: The problems at the GRCs must be considered by educators and other stakeholders to better provide educational evaluation, support services, and guidance to the students and their parents.

Parents of children with special healthcare needs search the Internet to learn about and share health-related information. Indeed, online communities (OCs) often increase knowledge and skills, decreasing feelings of isolation and distress. The current study explored the content and functioning of an Italian OC comprising parents of children with Down Syndrome. Following a netnographic method, data were analysed through the Latent Thematic Analysis. Five main themes emerged: the e-group, the child, prescriptive knowhow, being a parent, and personal experience across time. The findings illustrated the complex relationship between parents and children with Down Syndrome within the OC, exploring psychological themes recurring in parents of children with Down Syndrome. Within the e-group, special children and parental challenges can be described, sharing concerns, conflicting emotions, and experience-based information, countering Down Syndrome difficulties and social isolation. Clinicians and healthcare professionals should consider the OCs-related advantages to enhance the healthcare of parents and children with Down Syndrome.

Background: Organisational culture in group homes for people with intellectual disabilities has been identified as an influence on service delivery and staff behaviour. The aim was to examine patterns of culture across group homes in disability organisations.

Method: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture. Data were available from 260 staff who worked across 58 group homes managed by eight organisations. Using scatterplots and measures of dispersion, the scores on the seven GHCS subscales were examined for patterns of integrated (i.e., similarities) and differentiated (i.e., variability) culture within the organisations.

Results: Patterns of differentiated culture were found in six organisations for one or more GHCS subscales. Patterns of integrated culture were found in three organisations for one subscale. In two organisations, patterns of both integrated and differentiated culture were found.

Conclusions: The findings contribute to the conceptualisation of and research into organisational culture in group homes, with implications for changing and maintaining culture.