Transitions into adult services for young people with complex communication needs are often experienced as challenging and rarely include the voices of young people.
We piloted a person-centred method to enable one young person's (Dominic) voice to be included in his transition to adult services. An ‘I am’ Digital Story is a short video (c.6 min) that provides a strengths-based representation of a young person that is designed to be shared with and between settings. The process and outcomes of story cocreation were evaluated through semi-structured interviews with key stakeholders.
The process of story creation was evaluated very positively by key stakeholders. The information about Dominic's strengths and preferences helped the new setting to prepare for Dominic's arrival.
The ‘I am’ Digital Story method provides a powerful and accessible method for including the voices of young people with complex communication needs in their transitions.
Despite the growing diversity among students in higher education, nonprogression to postsecondary education persists for many students with intellectual disabilities with low completion rates for those who do progress. Research suggests that occupational therapy (OT) support can be extremely beneficial in assisting students. Less is known however about the impact of OT in higher education. This study aims to examine the use of OT embedded in a postsecondary programme for students with intellectual disabilities.
This study uses a scoping review of relevant literature and a qualitative analysis of OT working in a higher education programme specifically designed for students with intellectual disabilities in Ireland.
This paper highlights how the OT support within this programme uses a four-fold collaborative approach supporting students, staff, business partners and wider organisational structures in the university.
The analysis highlights the opportunities for collaboration between OT and curriculum developers, teaching and ancillary staff and students in higher education along with the significant OT input into work placements and internships with business partner mentors. Challenges in educating stakeholders to understand OT in the higher education environment would suggest a substantial need for further research.
In people with intellectual disabilities and mental disorders and/or challenging behaviours, rates of psychotropic drug prescription are high. In clinical treatments and evaluations, all stakeholders should be involved in a process of shared decision-making (SDM). We aimed to investigate the perspectives of clients and their carers on clients’ treatments with psychotropic drugs.
We conducted a survey among adults with intellectual disabilities in a Dutch mental healthcare centre providing community, outpatient and inpatient care. Data were collected between January and June 2022. Questions focused on experiences with the provision of information, treatment involvement and SDM and participants' wishes in this regard.
Respondents (57 clients and 21 carers) were largely satisfied with the overall care from their clinicians, and with how information on the pharmacological treatment was provided verbally, but written information was insufficient or not provided. Seventy per cent of clients and 60% of carers reported being involved in medication decision-making. However, over 75% of participants desired greater involvement in SDM and over 60% in medication reviews.
Service users and representatives were satisfied about the treatment and verbal information on their psychotropic drug use. The provision of written information, the SDM process and ongoing evaluation of psychotropic medication use could be improved.
Participation-focused interventions are gaining momentum. The Pathways and Resources for Engagement and Participation (PREP) is one such intervention, and it was investigated in this study for its effectiveness in supporting participation in employment-related activities for young adults with intellectual disabilities in Australia.
The application of the PREP approach was adapted to accommodate COVID-19 restrictions. Data were gathered from multiple sources in a triangulating manner following a case study design. Measures of performance, satisfaction, and a third measure of involvement were collected using the Canadian Occupational Performance Measure (COPM) in a multiple baseline format. The work questionnaire from the Assessment of Life Habits (Life-H) was administered at three time points, and qualitative data were collected post-intervention via a separate semi-structured interview with four young adults with intellectual disabilities and the two occupational therapist facilitators.
Performance, satisfaction and involvement scores had increased for 75% or more of employment-related goals at follow-up, although these changes were not statistically significant. Visual analysis indicated improved Life-H accomplishment scores post-intervention, but satisfaction with employment scores did not change. PREP was positively perceived, but the young adults reported needing more support from their participation teams.
The PREP intervention shifts the focus from a skills-based approach to a participation approach to practice and empowers young adults with intellectual disabilities to have greater independence over employment goals and related activities. COVID-19 restrictions limited the application of the PREP approach, but the experience was still valued by the participants, although additional training and support for them and the PREP participation team working with them may have further enhanced their experience and participation outcomes.
People with a learning disability experience challenges accessing primary health care services, including eye care services.
Eye care needs of people with a learning disability, and how well they are met by existing services in England, were explored. Barriers and enablers to accessing these services were investigated. This was informed by a scoping review of the literature and a historic literature library.
Adults with a learning disability are 10 times more likely than other adults to have a serious sight problem and children with learning disabilities are 28 times more likely. There is good evidence of high levels of unmet eye care need special schools in England with over 4 in 10 children attending having no history of any eye care.
The authors discuss possible systemic changes to address these inequalities in England. These include automatic entitlement to an NHS sight test annually, specialist pathways in community opticians, eye care services in special schools, and peer to peer and peer to professional promotion of services by people with lived experience. Dedicated care pathways have improved uptake of services in other areas of primary care. Research into the effectiveness of lived experience eye health advocacy is needed.
People with intellectual disability frequently have eating, drinking and swallowing difficulties (dysphagia) and are at greater risk of premature mortality, particularly from aspiration and respiratory infections. The insertion of a percutaneous endoscopic gastrostomy (PEG), as part of a multidisciplinary management plan, may help to maintain and improve nutrition. This study included people with intellectual disability who had ever had a PEG inserted and who presented to the specialist Speech and Language Therapy team in one Greater Manchester borough between 2000 and 2022 and assessed the risk of death and sociodemographic and clinical factors associated with this.
This was a cohort study using secondary data. Kaplan–Meier estimates were used to construct the probability of mortality curves. Cox proportional hazards were used to compare death rates in the different sociodemographic and clinical characteristic groups and were presented as hazard ratios and 95% confidence intervals.
Of 42 people included in the study, 18 (43%) died from the point of PEG insertion to the end of the study (December 2022). The median (interquartile range) time to death from PEG insertion was 5 (2–10) years, with four people (10%) dying in the first year. Aspiration pneumonia and unspecified pneumonia were responsible for seven (39%) deaths. No significant associations were found between sociodemographic and clinical factors and risk of death.
In persons with intellectual disability and a PEG who were followed up between 2000 and 2022, the mortality was around 40% with deaths occurring in the first year and respiratory conditions being an important cause. The lack of association with sociodemographic and clinical characteristics may have been due to a limited sample size. Further research is needed with larger samples and more variables, including quality of life data, to help understand and improve clinical practice in this area.
Special attention is required when considering any educational intervention aimed at its promotion and development. Our objective is to conduct an umbrella review of systematic reviews that gather evidence from relationships and sex education programmes tailored for individuals with intellectual disabilities.
The protocol was developed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analyses Protocol. Systematic reviews were identified through a search in Web of Science, SCOPUS and PsychINFO, using the descriptors: ‘intellectual disab*’ AND ‘sex*’AND ‘systematic’.
The results of the nine reviews included in the meta-review yield relevant outcomes related to 50 sex education interventions carried out with people with intellectual disabilities. This provided the opportunity to delve into the characteristics of these interventions to ascertain the accomplishments achieved to date.
The findings serve as foundation to propose and promote new research on this important area of life, addressing the inequalities identified concerning the sexuality and affective-sexual education of people with intellectual disabilities. It offers valuable information for the educational, social and healthcare fields, facilitating the design of more effective and rights-respecting initiatives.
During the COVID-19 pandemic in the United Kingdom, many health services were withdrawn from people with learning disabilities, with negative impacts on people's health. What has happened to people's health and healthcare as we move beyond the pandemic?
Access to health services and health status were tracked for 550 UK adults with learning disabilities, using structured online interviews with people with learning disabilities and online surveys with family members or paid carers. Information was provided four times, from Wave 1 (in the winter 2020/2021 ‘lockdown’) to Wave 4 (autumn 2022, over a year after public health protections stopped).
By Wave 4, most people with learning disabilities had had COVID-19, although high vaccination rates limited the number of people hospitalised. There was little evidence that use of GP services, community nurses, other therapists or annual health checks had increased over time, and at Wave 4 more people were having difficulty getting their medicines. People's health did not substantially improve over time. People with profound and multiple learning disabilities had poorer health and were less likely to be accessing health services.
Improvements in access to health services for people with learning disabilities after the pandemic have not yet happened.
京公网安备 11010802042870号
京ICP备2023020795号-1
扫码关注我们
求助内容：
应助结果提醒方式：