Search results

The purpose of this paper is to outline the development, piloting and evaluation of the Who’s Challenging Who? (WCW) training intervention for social care staff to improve their empathy and attitudes towards people with learning disabilities (LD) and challenging behaviour (CB).

A phased approach was taken to the development and testing of the intervention. Initially, the existing literature was reviewed, the theoretical background of the intervention was developed, and then the intervention was designed. A pilot study was undertaken, followed by further development, and a large-scale randomised controlled trial (RCT).

WCW had a small positive effect on staff empathy 20 weeks after the intervention, and small to moderate effects for other staff reported outcomes (e.g. positive empowerment attitudes and positive work motivation). Being trained by people with LD and CB encouraged staff to reflect on the impact they have on the people they support. The trainers with LD valued their role, and saw benefits beyond this (e.g. friendships).

It is possible to carry out high-quality RCT evaluations of social care practice, and research should continue to generate evidence in this way, as in healthcare settings. However, there were difficulties in retaining participants.

People with LD can be actively involved in the co-production and delivery of social care training.

Employment and a fair wage can increase the confidence and empowerment of people with LD.

This is the first large-scale RCT of an intervention that aimed to improve empathy/change attitudes in social care staff who work with people with LD and CB.

The purpose of this paper is to present data about the experiences of adults with learning disabilities during the COVID-19 pandemic across the UK.

Interviews were conducted with 609 adults with learning disabilities. Family carers and support staff of another 351 adults with learning disabilities completed a proxy online survey. The data were collected between December 2020 and February 2021 and concerned both worries/negatives and anything positive that had happened because of the COVID-19 pandemic.

Social isolation was the most commonly reported worry/negative for adults with learning disabilities, with other frequently reported worries/negatives including: changes to/loss of routine; loss of support/services; and decreased health/well-being/fitness. A large proportion of participants indicated that nothing positive had happened because of COVID-19, but some positives were reported, including: digital inclusion; more time spent with important people; improved health/well-being/fitness; and, a slower pace of life.

Future pandemic planning must ensure that adults with learning disabilities are supported to maintain social contact with the people who matter to them and to support their health and well-being (including maintaining access to essential services and activities). Some adults with learning disabilities may benefit from additional support to improve their digital confidence and access. This may in turn enable them to maintain contact with family, friends and support services/activities.

This is the largest study about the experiences of adults with learning disabilities during the COVID-19 pandemic in the UK. The authors primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities throughout the study.

This paper aims to outline the process of developing a new co-produced virtual group support programme called Positive Family Connections (PFC) aimed at family carers of children with a learning disability, or who are autistic, aged between 8 and 13 years.

Development process: family carers were recruited to develop PFC prior to a feasibility randomised controlled trial being conducted (not reported in this paper). The programme was positively oriented and family systems-focused. PFC was developed by family carers, along with the research team, and designed to be delivered by family carer facilitators. The development process included several meetings to design the format and content of the programme. An initial pilot was then delivered and further amendments made to the programme in response to the pilot participants’ feedback.

The programme: the co-produced PFC programme involved attending six weekly sessions on Zoom; each 2-h session focused on different themes (e.g. communication and activities).

Reflections on the co-production process: key ingredients of co-production included ensuring clarity on roles, positive communication and understanding of the family carers’ situation and utilising the varied skills family carers can bring to research and practise.

This is the first family systems-focused programme that the authors know of, that has been co-produced with family carers and solely delivered virtually by trained family carer facilitators from the outset.

Measuring “impact” is an important aspect of the dissemination of evidence-based practice and relevant to all disciplines. However, it has only recently become a focus of enquiry and is not commonly directly researched within the learning disabilities field. The purpose of this paper is to describe the process of developing a logic model for the UK Positive Behavioural Support (PBS) Academy as part of an evaluation and impact study of its work to date.

Logic models are a visual representation of the relationship between a project’s resources, activities and outputs and identified outcomes, in relation to key stakeholder groups. This representation allows for key impact measures to be identified and can be a useful tool for evaluation purposes. The authors used the process outlined by McLaughlin and Jordan (1998) to develop a bespoke logic model for the PBS Academy.

The model was particularly helpful in making clear the distinction between output and impact, identifying impact criteria differentiated by stakeholder group and across time scales, and highlighting areas of activity that are needed to increase the impact of the work of the PBS Academy in the longer term.

In the absence of any generalised impact evaluation frameworks in the learning disabilities field, the authors suggest that logic models may provide a useful framework for evaluating the impact of policy, practice, and research interventions.

This paper aims to present data about access to and use of health and social care services by adults with learning disabilities during the COVID-19 pandemic in England, Northern Ireland, Scotland and Wales.

Data were collected in three waves between December 2020 and September 2021 and concerned the use of health and social care services during the COVID-19 pandemic. Data were collected at one or more time-points directly from 694 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 447 adults with learning disabilities.

Many people with learning disabilities who reported regularly accessing services/supports pre-pandemic were not receiving them during the timeframe of this study. There were indications of increasing access to some services and supports between Wave 2 and 3, but this was not universal.

People in Cohort 2, who were likely to have severe/profound learning disabilities, were less frequently reported to access online community activities than people in Cohort 1, which is likely to exacerbate existing social isolation for this cohort and their family carers. Service providers should seek to ensure equitable access to services and activities for all people with learning disabilities in the event of future lockdowns or pandemics.

This is the largest longitudinal study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. We primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities and family members throughout the study.

The COVID-19 pandemic meant that it became impossible for many individuals with intellectual disability to access specialist mental health support. The purpose of this study was to evaluate a set of guided self-help resources adapted for delivery on an outreach basis.

The use and impact of the resources were evaluated through: data about downloads and requests for printed materials; interviews with individuals who used the resources; webinars with organisations; family members and support workers who had delivered the resources and an online survey with individuals who had delivered the resources.

The resources had considerable reach, with over 12,555 printed copies requested from across Scotland. The materials were perceived to be relevant and useful, helping individuals to talk about difficulties and to be aware that others were facing similar challenges.

The findings highlight the potential long-term value of guided self-help resources to help promote well-being that can be delivered on an outreach basis by family members and social care organisations.

The Behavior Problems Inventory-Short Form (BPI-S) is a shorter version of the Behavior Problems Inventory-01. In this paper, BPI-S population norms are reported from a total administrative population of adults with intellectual disability (ID). To facilitate the use of the BPI-S in clinical services to assess behavior change, the purpose of this paper is to describe how to use BPI-S clinically significant and reliable change (RC) scores.

Data were gathered on 265 adults with ID known to services. Proxy informants completed the BPI-S on challenging behaviors over the previous six months. Clinically significant cut-off values and RC scores were calculated using the Jacobson and Truax’s (1991) method.

BPI-S clinical reference data are presented to provide benchmarks for individual and group comparisons regarding challenging behavior. Examples demonstrate how to use clinical norms to determine change.

Behavior change is a major goal of researchers and practitioners. Data from the present study can make the BPI-S a valuable tool for determining change in challenging behavior following service input or intervention.

Whilst well used in research, the BPI-S may be less extensively used in practice. This present study provides data to enable researchers and practitioners to use the BPI-S more widely in assessing clinical outcomes, such as intervention research and service evaluation.

The purpose of this paper is to analyse ratings data from the recently developed Learning Disability Needs Assessment Tool (LDNAT) to identify factors associated with specialist intellectual disability (ID) hospital admissions.

Ratings from 1,692 individuals were analysed and the LDNAT items differing significantly between inpatients and non-inpatients were identified. Statistical analyses on total scores derived from these items were used to calculate an optimal cut-off. This LDNAT inpatient index score was also confirmed via an alternative statistical technique.

On average, 18 of the 23 LDNAT item ratings were significantly higher in people with ID assessed as inpatients compared to those rated in community settings. Using the total of these items, the resulting LDNAT inpatient index was analysed. A cut-off score of 22.5 was calculated to be the optimal balance between sensitivity (0.833) and specificity (0.750). This was confirmed by calculating the Youden index (j=0.583). At this level 68 per cent of inpatients and 81 per cent of non-inpatient cases were correctly identified.

Currently there is a national (UK) programme to radically reduce the amount of specialist inpatient care for people ID. This will necessitate early identification of individuals most at risk of admission together with investment in improved, proactive community services if admissions to a diminishing bed-base are to remain manageable.

This study confirms the associations between mental health difficulties, challenging behaviour and specialist hospital admissions for people with ID, extending existing research by translating these findings into a clinically usable risk index.

Evidence of overprescribing of psychotropic medicines to manage challenging behaviour in people with intellectual disabilities has led to national programmes within the UK to promote deprescribing, such as stopping the overprescribing of medication in people (with learning disabilities, autism or both). To successfully implement deprescribing initiatives, we need to understand how to engage stakeholders in the process.

In a published systematic review, we reported evidence about the process of deprescribing psychotropic medicines for people of all ages with intellectual disabilities and challenging behaviour. As a part of the original review, we searched for evidence about stakeholders’ experiences of the psychotropic deprescribing process, which was synthesised and reported within the current study.

Six studies were identified. Involving carers and people with intellectual disabilities, providing ongoing support and improving access to non-pharmacological interventions, including positive behaviour support, may contribute to successful outcomes, including reducing or stopping psychotropic medicines and improving quality of life. Implementing psychotropic deprescribing requires a multidisciplinary collaborative care approach and education for stakeholders.

There have been no previous reviews of stakeholder experiences of deprescribing psychotropic medications for people with intellectual disabilities and challenging behaviour. The existing literature is scant, and further research is needed.

With a historic lack of attention to synthesis methods such as systematic review and meta-analysis and a lack of randomised controlled trials, the evidence base for behavioural interventions for children and adults who are autistic or are diagnosed with developmental disabilities is patchy. The Sharland Foundation Developmental Disabilities Applied Behavioural Research and Impact Network (SF-DDARIN), a network of like-minded researchers and practitioners across the UK, aims to address this. The purpose of this paper is to describe the network’s work and provide the context for the remaining articles in the special issue that exemplify network projects.

In this case study paper, the authors describe how the SF-DDARIN works and is resourced, detailing the process used to maximise research opportunities by facilitating network members working together. The authors outline the progressive research steps that the SF-DDARIN has identified are needed to develop and improve the evidence base for behavioural interventions systematically and, with examples, describe how the network delivers these steps.

Since its establishment in 2016, the SF-DDARIN network members have collectively worked on more than 53 projects involving over 50 researchers, had over 120 special schools contribute to projects and have recruited over 500 participants. This has been achieved through funding from the Sharland Foundation, primarily to cover the staffing costs of a small support team and internship partnerships with external organisations. Some projects have attracted external funding.

SF-DDARIN may provide an innovative, effective and resource-efficient model for other groups seeking to develop and extend their evidence base in developmental disability research.