Ewch i’r prif gynnwys

Behaviour change

Mae'r cynnwys hwn ar gael yn Saesneg yn unig.

REF - Education

We are developing and testing interventions to benefit hard to reach and under-researched populations, including patients with Huntington's Disease and people with learning disabilities.

Research areas

  • Understanding why people behave the way they do
  • Developing models for interventions to change the behaviour of populations, patients and professionals
  • Evaluating interventions to change behaviours

Case studies

Mae'r cynnwys hwn ar gael yn Saesneg yn unig.

Group of students with teacher holding notebook

A cluster randomised controlled trial to test the effectiveness of a staff training intervention to improve support staff attitudes and empathy towards adults with learning disability and challenging behaviours.

Background

The study primarily addresses a recognised need for developing an effective workforce in adult social care, delivering effective leadership throughout the system, assessing models of co-production and their impact on social care outcomes, and providing best care and support for carers.

This study also aims to contribute to the evidence base for care homes and conceptualising and developing the evidence base for prevention in adult social care.

Previous research

Individuals with a learning disability (LD) often engage in behaviours that are labelled as “challenging” (challenging behaviours – CB) which are, by definition, a significant challenge for services and impact negatively on the quality of life of people with LD. CBs are also related to risk of abusive practices (cf. Winterbourne View scandal exposed by BBC Panorama), increased carer stress (Hastings, 2002a, 2002b), and high cost of support services (Knapp et al., 2005). High quality epidemiological research suggests that 18.7% of adults with LD known to services engage in CB that has significant impact on their lives (Jones et al., 2008).

Recruitment targets

We aim to recruit 118 residential settings into the trial with two members of staff from each locations: 236 participants in total.

Study design

We developed the Who’s Challenging Who (WCW) training course for support staff to address an identified need for training. The WCW training course is a half-day in length and involves a co-trainer with LD and CB working with a co-trainer without disability.

A pilot study was completed to establish the content of the training programme, which is now being evaluated in this large scale robust research trial.

Involving the public and patients

Involving the public has led to detailed feedback on the content of the training programme and the delivery of the course.

Research impact

As well as being grounded in longer-term research and theoretical development, Who’s Challenging Who offers a practical solution to the inclusion of the perspectives of users with learning disability and challenging behaviours in staff training to directly impact social care practice.

Funder: National Institute for Health Research (NIHR) School for Social Care Research

Chief investigator: Professor Richard Hastings

Montage of three images of elderly man exercising

A study to assess whether physical activity could benefit patients with Huntington's Disease.

Background

Huntington's Disease (HD) is an inherited neurological disease, which over time results in progressive problems with movement, thinking and behaviour, and ultimately difficulties in undertaking usual activities of daily living. This was a randomised study where participants were randomly given one of two home-based programmes, which were specifically developed for people with HD. One was based on physical activity and the other on social activity. The study was commissioned because it is unknown if physical activity is beneficial to people with HD (or indeed any more beneficial than social interaction).

Assessing the benefits of physical activity

We know that keeping active (both physically and socially) is important for any person who has a chronic health condition. This can become very difficult for people with HD given the complex and varied problems that they are faced with on a daily basis. This study was specifically trying to address what impact, if any, a physical activity programme has for those with HD, and whether physical activity or the act of communicating with people, makes a difference.

Recruitment

We aimed to recruit 62 participants from eight centres across Great Britain. This was a big challenge given the relative rarity of the disease and also the complex nature of the symptoms. We managed to recruit 42 participants (approximately 40% of those who we approached). Some of those identified potentially eligible only wanted to take part in research involving drugs, and for others there were too many other complexities in their daily living to be able to consider taking part in research that required a certain commitment.

Study design

Public and Patient Involvement Case Study

ENGAGE-HD Patient and Public Involvement Case Study

4 July 2016

Full interview with Monica Busse and Astrid Burrell about the ENGAGE-HD study.

PDF

The most unique aspect of this study was that HD participants received both programmes in their own home and that one of the programmes was based on social interaction alone and, over six sessions, participants were encouraged to talk about their interests with their coach.

Involving the public and patients

The public were involved right from the outset in the design and concept of the study. Our public representative advised on the study throughout and contributed to the dissemination day.

Learning from carers and the HD community

The public gave insight to specific problems that those with HD and their carers face on a daily basis. We invited participants, site staff and our steering group to join our management group at the end of the study to hear about the results and to share their experiences about being involved in the study.

Positive feedback

On the whole the feedback was very positive. Participants shared their thoughts in particular about the length and style of the assessments and also about the challenges in using exercise diaries. Moving forward as a study team, we will investigate the role of wearable technology to supplement our assessments.

Research impact

This was a feasibility study and was only designed to test if it was possible to run the two home-based programmes, if it was acceptable to participants, how well the assessments were received and how sensitive they were to measure any changes that took place. The results showed that both the home-based programmes were acceptable to participants. The assessments showed that the physical activity programme did have benefits for people with HD, although these results have to be taken with caution as this was a small study.

Potential wider study

Discussions are still ongoing as to how this study can be taken forward but it is clear that in order to properly measure how effective the exercise programme is, we would need to conduct a larger randomised trial.

Positive feedback from participants

The study participants from both groups reported that they enjoyed taking part. The social group valued the time to talk to the coach. If in a larger study the exercise programme was shown to be beneficial this would have huge impact on the lives of people and their families living with HD.

Funder: Health and Care Research Wales

Chief Investigator: Professor Monica Busse

Theme leads

Busse, Monica

Yr Athro Monica Busse

Professor

Email:
busseme@caerdydd.ac.uk
Telephone:
+44 (0)29 2068 7559
Rachel McNamara

Dr Rachel McNamara

Senior Research Fellow, South East Wales Trials Unit Head of Trials Management

Email:
mcnamara@caerdydd.ac.uk
Telephone:
+44 (0)29 2068 7614