ICALD - Stakeholder views v1.
Research type
Research Study
Full title
Improving Communication with Adults with Learning Disabilities (ICALD): barriers, facilitators and desired outcomes for communication support in social care settings.
IRAS ID
339593
Contact name
Vicky Slonims
Contact email
Sponsor organisation
South London & Maudsley
Clinicaltrials.gov Identifier
n/a, n/a
Duration of Study in the UK
1 years, 7 months, 31 days
Research summary
Around one fifth of adults with learning disabilities are supported in social care settings. Supporting people in these settings to experience a good quality of life requires skill and resources.
People with learning disabilities and minimal or no speech may find it difficult to communicate with others and to be understood. Poor communication skills can mean that people are at risk of developing behaviours that other people find challenging and at risk of being treated harshly or to be neglected. We want to find out what people would find helpful to improve and support the use of communication strategies for people with very little or no speech who live in social care settings. We want to learn from people with learning disabilities, their families and from staff working in social care settings. This information will help us to improve staff training and provide the right support after the training.
We will use a range of strategies to help us to understand the views of people with learning disabilities. We will also ask paid and family carers, trainers, service managers, health professionals and commissioners about their experiences of providing support relating to the communication needs of people with learning disabilities. We will ask staff if their working conditions affect the way they support communication for people with learning disabilities, and what changes they think are needed to improve the situation.
We will also ask the same people what they think good communication support should look like and how we would measure any improvements in communication support.
The findings of this study will be used to inform the co-production of a training package for staff working in social care supporting adults with learning with severe communication difficulties.Lay summary of study results: Many adults with learning disabilities communicate non-verbally, often using gestures, sounds, or facial expressions instead of words. For those with very little or no speech, communicating and being understood can be especially challenging. The people who regularly interact with adults with learning disabilities play an important role in supporting their communication.
NHS figures indicate that in 2020/21, one in five adults with learning disabilities receiving long-term social care were living in residential or nursing homes. Staff in these settings can support communication in many ways, but to do so they require skills and resources.
In this study, we spoke with adults with mild to moderate learning disabilities, family members, social care staff, and other health and care professionals to understand what they think helps with communication, what gets in the way, and what could improve communication support for people with a learning disability. We conducted online and in person workshops, interviews, focus groups, and supported conversations to maximise participation.
In total, forty-eight people shared their views to help researchers understand what needs to be in place and what needs to change, to achieve good communication support for adults with learning disabilities in social care settings. Researchers worked with participants to develop what we call a Theory of Change (ToC). This is an approach for developing complex interventions that illustrates why a programme works and how activities lead to outcomes. A ToC acts as a roadmap connecting short-term actions to long-term impact.
In the various discussions, participants talked about the importance for support staff of understanding the unique communication needs of each person with learning disability and adapting accordingly when their needs change. People talked about the value of family members of individuals with learning disabilities in helping staff understand their relative's communication signals, helping them to respond appropriately and provide effective support. Specialist input from Speech and Language Therapists (SLTs) was also highly valued, but participants told us that access is often limited.
Participants told us that sharing knowledge and information within staff teams was crucial. Practice leaders (staff responsible for guiding, supporting and supervising staff to ensure high quality, safe and effective practice) were seen to be particularly influential. Participants believed that leaders who were skilled and motivated to provide good communication support could share their knowledge and skills with others.
Communication training for staff was considered important for building consistent knowledge and skills, and participants thought that involving adults with learning disabilities in training may make it more effective. However, they told us that, in their experience, limited funding often restricted further training opportunities. Participants also said that post-training feedback & observations are important to check if the learnings from training are applied in daily practice.
Adults with learning disabilities highlighted the importance of staff responsiveness to non-verbal cues. The availability of appropriate resources, such as visual support and symbol systems, was considered important for supporting day-to-day needs. Participants also highlighted the need for staff to regularly review individuals’ assessments and documents.
Overall, participants believed that effective communication support could be achieved and sustained through collaborative communication training and resources, improved processes for information sharing and recording, ongoing skills development, peer mentoring, and supervision.
These findings have informed the development of a new staff education and workforce development programme to help staff provide effective communication support for adults with learning disabilities in social care settings.
A pre-print of a publication reporting the outcome of this work can be found at : OSF | Developing a theory of change to improve the implementation of communication support for adults with severe learning disabilities in social care settings.REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
24/WM/0147
Date of REC Opinion
31 Jul 2024
REC opinion
Favourable Opinion