Journal of Applied Research in Intellectual Disabilities最新文献

Background

Family members of children with developmental disabilities on average report poorer family functioning and mental health. Positive Family Connections is a co-produced, positively-oriented, family-systems support programme for families of children with developmental disabilities aged 8–13. We investigated experiences of Positive Family Connections, and the processes involved in change.

Method

We conducted semi-structured interviews with eight family carers who took part in Positive Family Connections and nine facilitators. Data were analysed using framework analysis.

Results

Programme recipients' and facilitators generally reported positive experiences of Positive Family Connections and described beneficial effects on wellbeing and family relationships. We developed a model showing how the lived experience of facilitators and positive approach led to reductions in isolation and perceived changes in mindset that were described as improving family carers' wellbeing and family relationships.

Conclusions

Positive Family Connections appears to be an acceptable programme which programme recipients and facilitators perceive to be beneficial.

Background

Staff working in municipal care homes with adults with intellectual disabilities impact their diet significantly.

Aim

To explore how external factors influence staff's motivation and performance of nutritional work with these residents.

Method

Semi-structured qualitative interviews with 11 staff using systematic text condensation for analysis.

Results

Five main themes were revealed: Need for the implementation of the official nutritional guidelines, lack of nutritional skills and knowledge, prioritisation of nutritional work tasks, staff's ethical dilemmas with the different legislations and management anchoring and collaboration.

Conclusions

Implementing systematic nutritional routines and clarifying nutritional work in practice were emphasised to promote continuity and better cooperation among the staff. This, and the need for increased nutritional competence in the municipality organisation, adequate framework conditions for nutritional work and practical and pedagogical measures for nutritional tasks, were crucial factors for staff's motivation, performance, consistency and equality in nutritional practice.

Background

There is a paucity of research into interventions that help people with intellectual disabilities learn to read. This feasibility study examines whether an online reading programme, Headsprout, with additional support strategies and supervision (the intervention), can be delivered by support workers/family carers and the feasibility of conducting a later large-scale effectiveness trial.

Methods

The study used a 2-arm randomised controlled trial (RCT) design with an embedded process evaluation using a mixed methods approach.

Results

Thirty-six adults with intellectual disabilities were recruited. Informed consent and data were obtained remotely. Progression criteria for recruitment, retention, randomisation and usual practice were met; intervention adherence and fidelity were poor. Pressure on support services was a key barrier.

Conclusions

Whilst progression to a large-scale effectiveness trial was not recommended, the success of conducting an RCT and remotely obtaining informed consent and data from adults with intellectual disabilities opens opportunities for increased participation in research for a currently under-represented group.

Registration: ISRCTN11409097

Background

Given the significant gap in tailored assessment tools, this research seeks to adapt the Self-concept (Form 5-AF5) questionnaire for young students with intellectual disabilities, employing an inclusive approach.

Method

Twenty-three disability experts initially assessed questionnaire suitability, leading to revisions for clarity. Cognitive interviews with eight students with intellectual disabilities clarified questions, and both original and adapted questionnaires were administered to students with and without intellectual disabilities for equivalence verification.

Results

The adapted scale showed good internal consistency. The correlation between scores of students without intellectual disabilities on original and adapted questionnaires exceeded 0.70. Students with intellectual disabilities reported higher levels of academic self-concept than their peers without intellectual disabilities.

Conclusions

The adaptation of the Self-concept (Form 5-AF5) questionnaire in this research facilitates the comparison of diverse student populations, as demonstrated by the alignment of results between the original and adapted questionnaires in the general student population.

Background

The evidence on the effect of age on the receptive and expressive language skills of individuals with Down syndrome is inconclusive. Recent research highlights the relevance of having tools to detect age-related changes in language skills.

Method

Data were collected on 45 adults with Down syndrome. All were assessed with the Peabody test, token test, verbal fluency tasks and an expressive language sample.

Results

Scores on token and Peabody showed a decline in older adults, whereas no significant effect of age was observed for expressive language measures. A quadratic regression confirmed the association between age and receptive language measures. Highly significant associations were also found between the performance on receptive and expressive language measures.

Conclusions

Receptive language skills are more age-sensitive than the expressive language skills. In addition to expressive language skills, receptive language skills should be measured because they show age associated changes not observed in expressive language.

Background

The COVID-19 pandemic precipitated a rapid roll-out of virtual health care services to people with intellectual disabilities. Limited evidence is available for clinicians to guide virtual care delivery.

Method

Twenty-three studies were identified through systematic searching of 16 databases. Extracted data were mapped to the NSW Virtual Health Strategy.

Results

Evidence exists to support the use of virtual care for screening, diagnosis, assessment, and review of people with intellectual disabilities, with benefits for clients, carers, and clinicians. Evidence mapped well to the priority areas of the NSW Virtual Health Strategy, highlighting the need for clinician training and specific supports and adaptations to ensure accessibility for people with intellectual disabilities.

Conclusions

The use of virtual care to assess the health needs of people with intellectual disabilities across the lifespan is nascent. An opportunity exists for co-design with people with intellectual disabilities to reduce barriers to accessing and engaging in virtual care.

Background

The positive impact of physical activity on health is widely known. A comparison between activPAL objective measures and International Physical Activity Questionnaire short form (IPAQ-SF) self-reported activity levels was completed with older adults with intellectual disability. Understanding differences between the two methodologies will better support the interpretations of findings and recommendations.

Methods

ActivPAL measures including intensity, time and type were considered for 72 participants. Similarly, the IPAQ-determined measures were investigated. Implications of different numbers of activPAL valid days were considered. Comparisons between the activPAL and IPAQ-SF scores were examined using multiple correlation coefficients.

Results

Low to moderate agreement was found between the activPAL and IPAQ-SF using Spearman's Rho and Pearson's correlation coefficients.

Conclusions

The IPAQ-SF may not be the optimal tool for the accurate determination of activity levels in this population.

Background

Children and young people with intellectual disability have poor healthcare and are at risk of patient safety events due to lack of staff training and consensus on competencies for safe and quality care. For the adoption of reasonable adjustments in mainstream paediatric healthcare clinical competencies needed to be adapted to an existing patient safety education framework.

Methods

Thirteen experts in intellectual disability health and patient safety participated in an eDelphi survey aimed at reaching consensus on core competencies required of the paediatric healthcare workforce. Four rounds were completed with descriptive and thematic analyses undertaken.

Results

Consensus was achieved for 120 competencies across seven domains. Results highlighted the need for adaptations in all the domains, particularly communication, working safely and specific areas unique to this population.

Conclusion

An adapted framework that addresses competencies for safe and quality care that included reasonable adjustments is critical for improving care for this population.

Background

Autistic people without intellectual disabilities have increased perceptual capacity: they can process more information at any given time compared to non-autistic people. We examined whether increased perceptual capacity is evident across the autistic spectrum (i.e. for autistic people with intellectual disabilities) and whether it is specific to autism, or also experienced by people with Williams Syndrome (WS).

Methods

Five autistic adults with intellectual disabilities and five adults with WS took part in accessible, qualitative interviews. Responses were analysed using thematic analysis.

Results

Both groups expressed enjoyment of focussed attention, with autistic participants preferring multiple simultaneous inputs. Responses suggested increased perceptual capacity for autistic participants only. The sensory environment was reported to be anxiety-inducing for both groups.

Conclusions

This study gives preliminary evidence that increased perceptual capacity may be universal across the autistic spectrum, and specific to autism. Understanding differences in capacity offers more targeted suggestions to support sensory challenges.

Background and Aims

Students with intellectual disability benefit from high-quality instruction in reading and mathematics.

Methods

This Theoretical Paper outlines the need for effective, evidence-based instructional practices for this population and the potential for observation research to inform such advancements. We report our systematic process of adapting two widely used observation tools initially developed for students with learning disabilities, to address content and instructional practices relevant to classrooms serving elementary students with intellectual disability.

Results

Our revised observation tools facilitated more inclusive data collection, taking into account the needs and goals of students with intellectual disability, in addition to their peers for whom the original tool was designed.

Conclusions

We offer guidance for researchers and practitioners to make similar adaptations when using research tools intended for other populations or instructional settings.