A case study on the impact of inclusive practice in Neuro-Rehabilitation / Neuro-Psychiatry services

Lead applicant: Dr Tina Cook, Northumbria University
Start date: September 2008. End date: September 2010
Email: tina.cook@northumbria.ac.uk

Background

The people who want to do this research, backed by evidence from our Service Users Forum, think there might be a link between the way people with neurological impairments are included in the NHS and the way they use treatment knowledge to develop their skills and independence in the community.
There is evidence of the need to improve the relationship between treatment and community. The importance of the subjective understandings that people attach to situations have been identified as drivers for their participation. In the UK, the need to understand how “cultural factors and personal values can affect judgements and decisions” was identified by the Department of Health as an important focus for their work. Much has been written about types of medical treatment people receive but we have found nothing about the effect of feeling included and its impact on the ability of people to use hospital-based and community services. It is important that the awareness, contribution, and effects of being including are researched.

Aims

This research seeks to find out whether there is a link between the way people with neurological impairments are included in the NHS community and the way they use knowledge from treatment to develop their skills and independence.
It will:-
1. identify current perceptions of service delivery
2. investigate understandings of integrated and inclusive practice
3. map what inclusion looks/feels like for people using neuro-rehabilitation services
4. articulate the impact of current forms of inclusive practice on the lives of service users
5. identify enablers and barriers to inclusive practice
6. provide holistic knowledge and a set of principles to support the development of more inclusive, effective service delivery
7. develop a body of knowledge on inclusive practice and its impact

What we will do and how we will do it

Users/ex-users, carers, staff of Neuro-Rehabilitation Services (NRSs) and representatives from the voluntary sector (RVSs), supported by University researchers, will carry out a study using facilitated action research. Researchers will receive training in using interviews, focus groups, narrative accounts (including use of blogs, diaries and other visual representations) and mapping. This mixed method approach supports both internal and external validity and trustworthiness. The sample population will be drawn from two strands, a) service users/carers and b) NRS staff/RVSs. Whilst beginning separately, the two strands will converge to shape the action stage of the research. Data analysis will be integral to the research process, using multiple perspectives to locate key themes and concepts.

The results of the research

The research will identify what works in practice and barriers people face because of the way people engage and react with them. It will provide information to other organisations about improving service delivery and raise awareness about how segregation and exclusion affects people’s ability to reach their potential. The findings will be shared with NHS Trusts, presented at conferences and be written up in journals.

Further information

Download a PowerPoint presentation Inclusive practice Oct 08 summarising our plan for the research.

Progress reports

Summer 2009 Update

The following ethical approvals have been sought:

University: Approved
R &D Committee NHS Trust: Approved by committee but due to complications with the CLRN IRAS process the formal approval process has not yet been completed
Provision approval by the NHS REC. However, as we had to await approval for our information processes before we could make the DVD for sending out to participants, final approval is pending on the basis of the DVD.

The original group of service users, carers and voluntary sector partners and staff have continued to shape the project through project management meetings and attending the steering group meetings.

The steering group has met twice and the management group has had 6 meetings.

A researcher, Eileen Birks, has been recruited and will begin work in May 2009.

The project has been embedded within the NHS Trust, the University and DeNDRoN. Links with The SHA and other regional organisations have been established with positive and supportive outcomes.

People with neurological conditions have been involved in every aspect of the study, from identifying the initial question to carrying out the research. They have worked collaboratively with academic and NHS Trust staff to design the study, develop innovative methods and to ensuring the practical inclusion of people with neurological long term.
Everyone has worked together to develop:

information sheets and DVDs in relation to informing prospective participants about the research
letters and consent forms,
an article for INVOLVE and
a poster for conferences.

Winter 2009 update

Full ethical approval for the project has now been obtained and 11 Management Group meetings and 4 steering group meetings have been held.

Recruitment to the study commenced 22nd June 2009. To date we have recruited: 31 service users, 9 staff, 3 carers and 3 voluntary sector partners. A newsletter is being produced on a quarterly basis to keep participants up to date with progress.

Data collection is underway. Most people have expressed a preference to be interviewed, however, 2 people have been engaged in photography projects, 1 person in writing a diary and a number of people are about to engage in focus groups and mapping. Sadly one person who was going to keep a diary for the project has died.
Some data analysis is taking place through 2 MSc students taking part in the project. An initial research group data analysis meeting is taking place in November, where the research team will explore the early data together.

The team is taking advice from an expert in the use of NVivo 8 to assist with data storage.

Service users, carers, representatives from voluntary sector organisations, staff and researchers from DeNDRoN came together to undertake training to support their role as researchers within the study. Everyone is a researcher on the study. It has proved time consuming for service users and carers to be given honorary contracts as researchers. The application process including CRB clearance and health clearance has taken 9 months to complete. However, the original group of service users, carers and voluntary sector partners and staff have continued to shape the project through project management meetings and attending the steering group meetings.

Recruiting carers to the study has been a challenge as there is no formal database of carers kept within the case study area. The most effective way of recruiting them has proved to be by talking to them at the time of engaging with the service users.

It has also been difficult to recruit staff. Whilst there was considerable interest shown in the study in the initial stages, only a relatively small proportion of consent forms have been returned. Informal discussions with staff have indicated problems with time pressures. Plans are in place, through the auspices of the local project steering group, to address this issue.

The nature of this research is to make it inclusive to all participants and researchers. This has resulted in the need for time to be taken to ensure that we engage with people in the appropriate manner.