Journal of Applied Research in Intellectual Disabilities最新文献

Background

Implementation issues often hinder reaching the potential of care technology to improve daily lives of people with intellectual disabilities. We investigated barriers to and facilitators of implementing different technology modalities (app/social robot/sensor/domotics) in long-term care.

Method

Care professionals (N = 83) from 12 Dutch disability care organisations completed a customised measurement instrument for determinants of innovations (MIDI) questionnaire.

Results

Out of 27 determinants, 20 were identified as facilitators and 16 as barriers. We highlight common barriers: few colleagues who work with the technology; no (awareness of) formal ratification of technology use; no arrangements regarding turnover of staff using the technology; unsettling organisational changes; technological defects and limited IT preconditions.

Conclusions

The results, which could be combined and compared across study sites, provide insight into which implementation determinants were already well addressed, and where there is ground to gain when implementing care technology in disability care organisations.

Background

Children with intellectual disability are less physically active and more sedentary than typically developing peers. To date no studies have tested the feasibility of a school-based walking intervention for children with Intellectual Disability.

Method

A clustered randomised controlled trial (cRCT), with an embedded process evaluation, was used to test the feasibility of a school-based walking intervention. Eight schools (n = 161 pupils aged 9–13 years) were randomised into either an intervention arm or an ‘exercise as usual’ arm. Measures included physical activity, physical fitness and emotional wellbeing. Baseline and 3-month follow-up data were collected.

Results

The ‘Walk Buds’ intervention was found to be acceptable to teaching staff and pupils, with an uptake rate of the walking sessions offered of 84%.

Conclusion

A number of challenges were experienced, relating to the COVID-19 pandemic, and difficulties collecting accelerometer data. Barriers, facilitators and required changes identified through the mixed methods process evaluation are discussed.

Background

Previous research identifies organisational culture as one of a number of factors associated with the quality of life outcomes of group home residents' with intellectual and developmental disabilities. This study aims to elaborate on the dimensions of group home culture in settings in England.

Method

Participant observations and semi-structured interviews with staff were carried out in two group homes. Field-notes, interview notes and transcripts were analysed using inductive thematic analysis by a researcher naïve to the project and the previous literature. Initial coding was re-examined after sensitisation to theorised models in previous literature to identify the most parsimonious fit. The two settings were rated and compared using a five-point Likert scale for each of the dimensions.

Results

The findings describe group home culture across seven dimensions. There were mixed ratings across the different dimensions reflecting inconsistencies in culture that were reflected in staff practice. The challenge in assigning a global rating of culture in group homes, which includes interactions across multiple staff and multiple residents over time, was highlighted.

Conclusion

The development of an observational measure of culture is highlighted as potentially helpful in understanding and responding to culture in services for individuals with intellectual and developmental disabilities.

Background

Building ‘key skills’ may help prevent the development of challenging behaviour in children with an intellectual disability. The aim of this paper was to extend the current limited evidence in this area.

Method

We undertook two studies with children with an intellectual disability in school settings: (1) a cross-sectional replication study exploring the relationship between ‘key skills’ and challenging behaviour. (2) a longitudinal study follow-up exploring change in ‘key skill’ levels and challenging behaviour.

Results

The replication study recruited 74 participants, those scoring lowest in ‘key skill’ had a 94% chance of having challenging behaviour; those with the highest scores had a 6% chance.

The follow-up study recruited 39 participants, we found a significant increase in children's ‘key skill’ level (p < .001) and a decrease in their challenging behaviour (p = .046).

Conclusion

Building ‘key skills’ in children with an intellectual disability may help reduce or prevent challenging behaviour.

Background

This study assessed the effectiveness of a cross-departmental case review panel—the Multicap Complex Behaviour Forum (CBF)—in reducing challenging behaviour exhibited by people with intellectual disabilities.

Methods

Thirty participants (15 CBF participants and 15 matched-control participants) took part in the study. Behavioural data was collected for each CBF participant (and their matched control) for the three-month period before entering the CBF, during their time in the CBF, and the 3 months after exiting the CBF.

Results

There was a significant interaction of group and time observed, with the CBF participants showing more change in behavioural incidents across time. Associated with this change was a noticeable reduction in staff injury costs related to the challenging behaviour of the CBF participants.

Conclusions

This study demonstrates that positive behavioural and organisational outcomes are enhanced by fostering collaboration across multiple organisational systems when it comes to supporting people who exhibit challenging behaviours.

Background

Prader-Willi syndrome (PWS) is commonly associated with intellectual disability, but also with a specific behavioural phenotype and a high predisposition to psychiatric comorbidity. This study examines the psychiatric care situation of people with PWS.

Method

A structured online questionnaire was administered to carers of people with PWS living in Germany, asking about demographic, diagnostic and treatment parameters as well as personal experiences.

Results

Of 77 people with PWS, 44.2% had at least one psychiatric comorbid diagnosis. The main reasons for seeking psychiatric care were emotional outbursts and aggressive behaviour. 34.9% reported that they were currently seeking psychiatric care without success. However, 32.5% of PWS had been treated with psychotropic medication, mainly antipsychotics.

Conclusions

Psychiatric comorbidity appears to be undertreated in PWS, especially in the ambulatory setting. Uncertainty among mental health care providers may also lead to frequent off-label use of psychotropic medications.

Background

This study aimed to identify perspectives of relatives and healthcare professionals regarding self-determination support for people with severe or profound intellectual and multiple disabilities, highlighting agreements and differences in their viewpoints.

Method

Following a concept mapping study, online focus group meetings yielded statements on self-determination support from relatives (residential facilities: n = 6, family homes: n = 7) and healthcare professionals (residential facilities: n = 9, family home: n = 5). Participants clustered and rated statements, resulting in four concept maps interpreted by experts (N = 6).

Results

The 285 statements were categorised into 5–7 clusters per map, revealing key strategies for self-determination support: communication and choice making (facilitated by aids), sensitivity, familiarity, and collaboration among involved parties.

Conclusion

Each group placed different emphasis on these strategies, highlighting importance of continuous support in their implementation. Future research should prioritise practical implementations of these strategies to enhance self-determination.

Background

In people with intellectual disabilities and/or autism spectrum disorder, oral midazolam (OM) is very effective as premedication for facilitating medical treatment. In this retrospective study, we investigated the optimal dosage of OM for premedication.

Methods

Patients with intellectual disability and/or autism spectrum disorder who were given OM as a premedication were selected from anaesthesia records. The primary outcome variable was the dose of OM (mg/kg) required to produce an adequate sedation.

Results

The mean OM dose required was 0.32 ± 0.10 mg/kg. The required OM dose decreased significantly as age and weight increased, and age and weight were also shown to be significantly associated with the dose of OM in the multivariate linear regression analysis.

Conclusion

The dosage of OM to achieve adequate sedation should decrease as the patient ages. Furthermore, adequate sedation can be achieved with even lower doses of OM in obese people.

Background

Providing menstrual education and guidance for menstrual management for girls and young women with intellectual disabilities is recommended to ensure smooth pubertal transitions and to support menstrual self-agency.

Method

The purpose of this systematic review is to explore menstrual education interventions for girls and young women with intellectual disabilities.

Results

Nine studies were included. Interventions were provided in small groups (n = 4) and individually (n = 5). Most studies used dolls (n = 7) and task analysis (n = 7) to teach pad-replacement skills. All reported significant improvements in participant skills and/or knowledge following the intervention. Only one study addressed self-agency and self-esteem as an outcome of the intervention. Menstrual education for girls and young women with intellectual disabilities is largely focused on pad-replacement skills.

Conclusion

Further research is needed to understand the impact of menstrual health and hygiene education on variables apart from skill improvement such as self-agency and long-term health outcomes related to menstrual health.

Background

Personal narratives play an essential role in children's social and academic development. However, children with Down syndrome have ongoing challenges with constructing and communicating personal narratives.

Methods

Using a single-case multiple-probe across participants design, we examined whether a targeted intervention could improve both micro- and macro-structural aspects of personal narratives from Chinese adolescents with Down syndrome.

Results

All three participants demonstrated high treatment effects in two macrostructural narrative outcomes (i.e., narrative element complexity and narrative coherence) in response to the intervention and moderate to high treatment effects in the microstructural narrative outcomes (i.e., the mean length of utterance in words and the number of different words). However, all participants demonstrated limited improvements in narrative cohesion. These effects were maintained and generalised in a different narrative condition.

Conclusions

The preliminary findings support the feasibility and effectiveness of the personal narrative intervention incorporated with self-monitoring strategies for adolescents with Down syndrome.