Journal of Intellectual & Developmental Disability最新文献

Background: Fetal alcohol spectrum disorder (FASD) is a developmental disability. A diagnosis of FASD is vital for support and wellbeing. However, receiving a diagnosis can be challenging. The aim of this research was to understand the experiences and impact of diagnosis for caregivers of those with FASD in New Zealand.

Method: We conducted focus groups with caregivers and whānau (family) to explore their experiences with FASD. The transcripts were analysed using reflexive thematic analysis.

Results: We identified three themes across the life course of diagnosis, barriers to diagnosis, meaning of diagnosis and life with diagnosis.

Conclusion: A diagnosis is vital for caregivers of those with FASD. However, it is difficult to access a diagnosis in New Zealand due to professionals' lack of training, knowledge, and inadequate professional support. It is essential to build our professionals workforce competence and skills of FASD.

Background: This systematic review examined the effectiveness of digital activity schedules as an intervention for individuals with autism spectrum disorder (ASD) or intellectual disability.

Method: To be included, studies had to use a digitally presented activity schedule, excluding task analyses of single activities or group visual schedules, and the intervention must involve individuals with ASD or intellectual disability as the participants.

Results: Seventeen studies met the criteria, involving 58 participants, and focused on leisure, independent living, and academic skills across different age groups, with 82% reporting fidelity of implementation.

Conclusion: The review found that most interventions were concentrated in early childhood, primarily aimed at teaching leisure activities, and often combined with other concurrent interventions. The settings, participant ages, and interventions varied, with 41% meeting What Works Clearinghouse quality indicators. Future research should focus on interventions implemented in secondary education and independent living skills, with more rigorous methodological standards.

Background: A qualitative process evaluation was carried out to investigate implementation of Active Support in services for people with mild and moderate intellectual disability in the Netherlands, and to identify contextual factors that may contribute to variation in implementation, perceived effectiveness, and pathways to successful outcomes.

Method: Qualitative semi-structured interviews were conducted with stakeholders who were involved with the Active Support implementation. Interviews with practice leaders (n = 6), Active Support trainers (n = 4), direct support staff (n = 8), and residents with mild intellectual disabilities (n = 7) were analysed through a thematic analysis.

Results: Organisational and managerial preparation appeared to lead to positive Active Support training experiences, in turn leading to behavioural changes in staff, resulting in resident wellbeing. Practice leaders' coaching, staff collaboration, and additional staffing resources through volunteers and students facilitated implementation of Active Support.

Conclusions: Identification of these factors enhances our understanding of the dynamic process of Active Support implementation in a Dutch context.

Background: This study examined how Chinese cultural and socioeconomic contexts shape family support for young adults with intellectual disabilities seeking employment.

Method: Semi-structured interviews were conducted with 18 parents in Harbin, China, analysed using family systems theory.

Results: Findings revealed distinctly Chinese support patterns characterised by intense parental involvement, collective resource mobilisation, and emphasis on family harmony. Parents balanced traditional values with modern employment demands amid China's rapidly evolving labour market and limited formal services.

Conclusion: Chinese families develop unique strategies blending family-centred support with professional services, suggesting need for culturally responsive approaches addressing these unique contexts.

Background: Higher education institutions aim to provide access to individuals with intellectual disability, yet the numbers remain small. Developing inclusive learning environments is a complex process, with parents and advocates playing vital roles in identifying barriers and solutions. This study explores their perspectives on embedding inclusive practices in higher education in the Republic of Ireland.

Method: A qualitative design was employed, utilising focus group interviews and purposive sampling to gather in-depth insights.

Results: Thematic analysis identified three key themes: (i) advocating for educational opportunities; (ii) preparing for inclusion; and (iii) designing inclusive education. These themes were framed using normalisation process theory constructs to guide interpretation.

Conclusion: Inclusive higher education is desirable and achievable through collaboration, positive attitudes, and targeted support. Engaging parents and advocates as stakeholders is essential for overcoming challenges, fostering meaningful participation, and advancing the development of inclusive learning environments for individuals with intellectual disability.

Background: The idiosyncratic ways of communication of people with profound intellectual disabilities complicate meaningful interactions between them and support staff. A physiological explication of their interplay may help to better understand meaningful contact.

Method: Five staff-client-dyads were filmed during dyadic interactions, while their heart rate (HR) and electrodermal activity (EDA) were measured. HR and EDA synchrony were explored via Cross Recurrence Quantification analyses (CRQA), and the associations between physiological synchrony and meaningfulness as experienced by support staff were investigated.

Results: In the five dyads, HR synchrony was high, while EDA synchrony differed between dyads. The association between HR and/or EDA synchrony and experienced meaningfulness showed inconsistent patterns across dyads and yielded weak, non-significant pooled correlations in the meta-analytic analyses.

Conclusion: The association between physiological synchrony and meaningfulness was neither confirmed nor rejected. Follow-up research is needed to find out whether these physiological measures can be applied to quantify experienced meaningfulness.

Background: Research on how parents with intellectual and developmental disabilities perceive the Parenting Young Children (PTC) support program for the development of parenting skills is scarce. The study explored parents' experiences of PYC's methodology.

Method: Interviews were conducted with 15 Swedish parents (8 mothers, 7 fathers) at risk for child neglect who had received PYC for 6 months or longer. The interviews were analysed with reflexive thematic analysis.

Results: Two main themes, with six subthemes, were identified: "Developing a trusting relationship with the PYC practitioner" and "Tailored support, planning, and training in collaboration." One overarching theme was also created: "The PYC methodology facilitates learning of parenting skills through a trusting and collaborative process guided by adapted support."

Conclusion: Parents with intellectual and developmental disabilities perceived the PYC methodology as helpful and well-adapted. The study highlights that learning parenting skills can be facilitated by a collaborative and tailored approach using behavioural teaching strategies.

Background: Women with intellectual and developmental disabilities face barriers to cervical screening. This scoping review charts the literature on interventions designed to improve cervical screening receipt and knowledge in this population. Method: A systematic search of Embase (Elsevier), PubMed.gov, CINHAL (EBSCO), and Scopus (Elsevier) yielded 199 results, six of which met the inclusion criteria of women aged 21-65 years with intellectual and developmental disabilities, intervention studies, and outcomes of cervical screen receipt or knowledge. Results: All interventions, using the socioecological model (SEM) as a framework, reported an increase in receipt or knowledge of cervical screening. Interventions at the individual, interpersonal, and organisational levels of the SEM included education, physical therapy, health assessment programs, provider accompaniment, and screening adaptations. Conclusion: There are interventions that have potential to address disparities in cervical screening for women with intellectual and developmental disabilities. More research would help identify which women would benefit from interventions.