STaff Resilience And Wellbeing Project (STRAW): Feasibility study of Critical Incident Stress Management (CISM) to support staff in learning disability adult social care services

Project group: Peter Baker (PI), Nick Gore (Co-I,Tizard), Beckie Whelton (RA, Tizard), Imarni Hill (RA, Tizard), Professor Richard Hastings (Co-I, University of Warwick), Nick Barrett (Co-I, Barrett Behaviour Change Consultancy), Catherine Henderson (Co-I, London School of Economics.

Funded by: NIHR School for Social Care Research  https://www.sscr.nihr.ac.uk/projects/p155/

Project aims: Staff working with people with learning disabilities and/or are autistic, who present behaviours that challenge are at risk of experiencing stress and trauma related to their work. Such stress can have a direct impact on the quality-of-care staff can provide. Previous research indicates that staff who feel more supported are better equipped to deal with the emotional impact of these experiences. This study aims to take Critical Incident Stress Management (CISM) – an approach currently used by first responders and adapt it for use as a service wide intervention specifically for adult social care staff working with LD and/autistic individuals who present with behaviours that challenge and explore the feasibility of implementing and evaluating CISM’s effectiveness and cost effectiveness. The project has two phases; phase one involved adapting CISM to support adult social care staff who work with LD and/or autistic people who present behaviours that challenge with the assistance of key adult social care stakeholders and experts in the field of LD challenging behaviour & organisational trauma. Phase two involves piloting the implementation of the adapted CISM support model with the assistance of two adult social care independent providers to identify four service units with high reported incidents of impactful behaviours that challenge. The pilot will explore the feasibility of implementation along with gathering outcome data and initial cost information.

Commenced: September 2020

Contact: Dr Peter Baker p.a.baker@kent.ac.uk

Early Identification of Autism & Training in Primary School Settings

Project group: Dr Paraskevi Triantafyllopoulou (PI), Dr Serena Tomlinson, Dr Melanie Howell, Dr Dani Shalet, Winnie Tsang, Georgios Mamolis, Lina Moraitou, Susie Bass, Stella Koiliari, Dr Tracey Warren, Dr Jill Bradshaw, Prof Glynis Murphy

Funded by: Department for Education

Project aims: The Early Years Foundation Stage Profile (EYFSP) is an assessment which is completed for all children in England at the end of reception year by their teachers. To facilitate best practice, it teachers in mainstream settings should have a basic understanding of autism, to aid early identification of autism and to promote positive attitudes towards autistic pupils.

This project aims to replicate and extend UK research by Wright et al. (2019) in which the EYFSP was employed as a screening tool in order to identify children who might be autistic. Primary school children who reached a cut-off in specific five EYFSP items are assessed using autism screening questionnaires. Autism is then confirmed by the gold standard method of Autism Diagnostic Interview Revised (ADI-R), the Autism Diagnostic Observation Schedule Version 2 (ADOS-2) and a multidisciplinary team meeting.

The aims and objectives of this study are :

(a) To identify whether autism awareness training increases teachers’ autism understanding as well as quality and accuracy of autism referrals.
(b)To further confirm the feasibility of a two-stage screening process within school settings, involving the EYFSP and autism screening questionnaires.
(c) To examine identification of autism in girls as compared to boys and investigate different cut -off scores of autism screening questionnaires.

Contact: Dr Paraskevi Triantafyllopoulou (PI) P.Triantafyllopoulou@kent.ac.uk

Helping people with intellectual and/or developmental disabilities at risk under the law. See: Safer-IDD project site.

Project group: Prof Glynis Murphy, Dr Neil Sinclair, Dr Rowena Rossiter, Dr Josie Collins, Lisa Richardson, Nadjet El-Mehidi

Funded by: DoH and Baily Thomas Charitable Fund. Now funded by NIHR (HTA).

Project aims: Safer-IDD provides information,  resources, training and research in relation to people with intellectual and/or developmental disabilities (IDD), who are at risk under the law (either as suspects or victims/witnesses).

Contact: g.h.murphy@kent.ac.uk

Experiences of conducting practice-based research amongst behavioural practitioners

Project group: Serena Tomlinson (Tizard Centre), Nick Gore (Tizard Centre), Andy Swartfigure (BeyondAutism)

Project aims: We would like to find out how behavioural practitioners view research, whether and how they use research in their practice, and their experiences of conducting practice-based research in the field (if applicable) including any advantages or challenges they have encountered in this. Behavioural practitioners include anyone using a behavioural framework in their work, and may be working in range of settings (including practice-based, or Universities). We are interested in the experiences of those who have and have not conducted research themselves. The study aims to provide information about how research is perceived and used within the field, ways to maximise the usefulness of research, and ways to support those who would like to conduct practice-based research as part of their role.

Contact: Serena Tomlinson: s.tomlinson@kent.ac.uk

Safer online lives: use of the internet & social media by people with Intellectual Disabilities

Project group: Dr Paraskevi Triantafyllopoulou (PI), Jessie Newsome (RA), Professor Michelle McCarthy (Co-I), Professor Shujun Li (Co-I)

Funded by: NIHR School for Social Care Research

Project aims: This is a mixed-methods exploratory study, using both qualitative and quantitative elements to explore the benefits of internet use for people with Intellectual Disabilities (ID), the risks they might come up against, the barriers people with ID might come across due to the ‘digital divide’, and the opportunities offered by being online. The views and experiences of adults with ID, family carers, paid carers, as well as the views of safeguarding practitioners and professionals, will be investigated.

Contact: saferonlinelives@kent.ac.uk

Access to Early Years Support for Children with Neurodevelopmental Conditions and Their Families: Associations with Neighbourhood Socio-Economic Deprivation

Project group: Suzi Sapiets, x2 undergraduate students (TBC), Professor Vaso Totsika (UCL), Professor Richard Hastings (University of Warwick), Dr Nick Gore (Tizard Centre) Embracing Complexity coalition

Funded by: University of Kent’s Summer Vacation Research Competition

Project aims: Neurodevelopmental conditions (eg autism, learning disabilities, attention difficulties) are lifelong conditions which affect the brain and influence how people think, perceive the world and interact with others. Children with neurodevelopmental conditions have an increased risk of poorer mental and physical health. While early support can improve outcomes, research indicates low rates of access. Factors such as local area-level income, employment, education, health, housing and services likely influence access, however, there is a lack of research on this. Developing understanding of the relationship between these and access to support is crucial to address low levels of access and ensure all children with neurodevelopmental conditions can benefit from early support. This research project aims to develop an understanding of the relationship between local area-level socio-economic deprivation and access to early years support for families of children with neurodevelopmental conditions. It will make use of a large dataset collated as part of the Support in the Early Years study, documenting access to a various education, health and social care services in addition to a range of early intervention programmes for families of young children with neurodevelopmental condition across the UK.

Contact: Suzi Sapiets s.sapiets@kent.ac.uk

Sensory needs and autistic adults

Project group: Jill Bradshaw (PI), Damian Milton, Jane Pringle and Julie Beadle-Brown

Funded by: John and Lorna Wing Foundation

Project aims: Many autistic adults have sensory needs. Little is known about these sensory needs and whether these needs are met.
The researchers worked with autistic advisors, paid supporters, family-carers and professionals. An observational study was planned but this was not possible due to Covid-19.

An online survey was completed by 130 autistic adults and by family-carers or paid supporters of 58 autistic adults who also had intellectual disabilities.

All but one participant identified some sensory needs with many having at least 20 issues. Autistic adults who had intellectual disabilities had fewer reported sensory issues and more than one fifth of informants did not know whether the person had a sensory need in that area.
There were significant differences between autistic people who did and did not have intellectual disabilities in three quarters of the items. Autistic adults who did not have additional intellectual disabilities were more likely to report an item as being an issue and were less likely to get their sensory needs met, particularly when reporting about a work environment. Sensory issues in autistic adults who have intellectual disabilities may not be recognised. Many autistic people do not get their sensory needs met even at home. Further research is needed.

Contact: Jane Pringle – J.M.Pringle@kent.ac.uk

Early Positive Approaches to Support

Project group: Dr Nick Gore and Dr Jill Bradshaw

Project aims: Early Positive Approaches to Support (E-PAtS) is a non-commercial, co-produced and co-facilitated support programme for caregivers of children with intellectual and developmental disabilities aged 0-5. E-PAtS has been the focus of a recently completed feasibility trial funded by NIHR PHR) and is currently being piloted and evaluated via online delivery.

Contact: N.J.Gore@Kent.ac.uk

Mapping and Evaluating Services for Children with Learning Disability and Behaviours that Challenge

Project group: Lead by University of Warwick. Dr Nick Gore and Dr Jill Bradshaw are Co-investigators

Funded by: NIHR Health Services and Delivery Research

Project aims: The aim of the MELD project is to map, describe distinct service models, and explore functioning of community services for children with learning disability and behaviours that challenge in England.

Contact: meldstudy@warwick.ac.uk and N.J.Gore@Kent.ac.uk

The New Normal

Project group: Dr Nick Gore and Dr Jill Bradshaw with the Challenging Behaviour Foundation

Project aims: A project to explore the experiences and views of family caregivers supporting a relative with severe learning disabilities and behaviour described as challenging during the COIVID period

Contact: N.J.Gore@Kent.ac.uk

Sharland Foundation Developmental Disabilities ABA Research and Impact Network (SF-DDARIN)

Project group: Lead by University of Warwick. Nick Gore and Peter Baker are Co-investigators

Funded by: Sharland Foundation (Via University of Warwick)

Project aims: The Sharland Foundation Developmental Disabilities ABA Research and Impact Network (SF-DDARIN) is a network of like-minded research practitioners. The over-arching purpose of SF-DDARIN is to increase the reach and impact of ABA-based interventions for children and adults with developmental disabilities (including intellectual disabilities and/or autism) to support their independence and increased quality of life. Nick Gore and Peter Baker lead on the PBS sub-group

Contact: N.J.Gore@Kent.ac.uk and l.denne@warwick.ac.uk 

Coronavirus and people with learning disabilities study: The impact of the COVID-19 pandemic on people with learning disabilities and factors associated with better outcomes

Project group:

• Primary Investigators: Prof Richard Hastings (University of Warwick), Prof Chris Hatton (Manchester Metropolitan University)
• Co-Investigators: Prof David Abbott (University of Bristol), Dr Stephen Beyer (Cardiff University), Dr Jill Bradshaw (University of Kent), Dr Nick Gore (University of Kent), Prof Pauline Heslop (University of Bristol), Prof Andrew Jahoda (University of Glasgow), Anna Marriott (National Development Team for Inclusion), Dr Katrina Scior (UCL), Dr Laurence Taggart (University of Ulster), Dr Stuart Todd (University of South Wales)
• Partner organisations: Learning Disability Wales, All Wales Forum of Parents and Carers of People with Learning Disabilities, Scottish Commission for Learning Disability, Promoting A More Inclusive Society (PAMIS), Positive Futures, Mencap Northern Ireland, Learning Disability England, PMLD Link
• Researchers: Dr Sue Caton (Manchester Metropolitan University), Dr Samantha Flynn (University of Warwick), Dr Tom Bailey (University of Warwick), Dr Amanda Gillooly (University of Glasgow), Dr Roseann Maguire (University of Glasgow), Dr Edward Oloidi (University of South Wales), Dr Peter Mulhall (University of Ulster)

Funded by: UKRI-COVID-19 research programme

Project aims: We are aiming to answer three key questions in this project:

1. What are the wellbeing, health and social effects of the COVID-19 pandemic, including social restrictions and changes to how people are supported, on the lives of adults with learning disabilities across the UK over time?
2. What actionable factors are associated with better outcomes for: a) people with mild/moderate learning disabilities; b) people with severe/profound learning disabilities?
3. What urgent issues concerning people with learning disabilities are emerging over time?
   We aimed to recruit 1000 people with learning disabilities across the UK (cohort 1), and 500 family carers or paid support staff of people with learning disabilities (cohort 2) who could not take part in an interview themselves.

There will be three ‘Waves’ of data collections to capture differences over time during the COVID-19 pandemic, so we will interview or survey all participants three times (once per ‘Wave’) during the project:

• Cohort 1 will take part in an interview (e.g., telephone, video-call) with a researcher three times over the course of the project
• Cohort 2 will complete an online survey three times over the course of the project.

Further information

• See Wave 1 results (March 2021)

Contact: S.Flynn.1@warwick.ac.uk

Seldom Heard

Project group: Challenging Behaviour Foundation (PI), Jill Bradshaw, Nick Gore (Co-I) and Steve Carnaby (Researcher)

Funded by: NHS England

Project aims: We all need to be more creative to make sure we try to involve everyone, especially about decisions that make a difference to peoples’ lives. This includes people who might not have their views and preferences considered, for example children and adults with severe learning disabilities or profound multiple learning disabilities.

The Challenging Behaviour Foundation and the Tizard Centre have been working on new and creative ways to improve how we listen, supported by an advisory group which includes family carers, providers, Mencap and PMLD Link.

Children and adults who take part will benefit by:

• Having their views heard by NHS England via a report
• Getting a personalised tool with ideas about how best to gain their views and support better communication, choice and control, which can be used by families and caregivers to make sure their views and preferences are taken into account in the future
• Helping to show how everyone’s views and preferences can be heard
• Helping influence how the NHS delivers support to people with learning disabilities and autistic people
• Influencing better support and services are designed that truly meet the person’s needs and preferences.

Contact: Jill Bradshaw – j.bradshaw@kent.ac.uk

Project report due: Summer 2021

Involving adults with intellectual and developmental disability who display behaviours that challenge in decisions relating to their support

Project group: Jill Bradshaw (PI), Nick Gore, Jane Pringle, Viv Cooper (Co-I) and Julie Beadle-Brown (SSCR link)

Funded by: School for Social Care Research

Project aims: To better understand how to access and respond to the views, will and preferences of people with intellectual and developmental disabilities, with a particular focus on ensuring people’s involvement in the development of behaviour support plans.  Whilst our research to date has demonstrated feasibility of direct involvement, more research is now needed to explore the benefits of this approach, by identifying ways of more directly involving people who have a greater range of communication skills and challenges and to document these experiences to produce and evaluate a toolkit for professionals to use.

Commenced: January 2021

Contact: Jane Pringle – j.m.pringle@kent.ac.uk

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The Research Excellence Framework (REF) 2021 has confirmed Kent as a leading research university, with the majority of its submissions rated as world-leading (4*) or internationally excellent.