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

the Final Report is now available for download.

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.

Summer 2010 update

Recruitment to the study continues. We currently have 41 service users, 16 staff, 10 carers, 4 voluntary sector partners and have met over 75% of our accrual target. We have been successful in recruiting some senior managers to the research, though as yet we have been unsuccessful in recruiting nursing staff, despite verbal interest being expressed. The number of carers and voluntary sector partners is increasing and this remains the focus for our ongoing recruitment. We are currently following up all participants who had originally expressed an interest but had not returned their consent forms.

Data collection is also continuing, although our capacity as a research team has been reduced by the sad loss of one of our service users. In addition, unforeseen circumstances have led to reduced opportunities for a second user-researcher to carry out data collection and our carer-researcher being unable to take an active part. The team has, however, worked hard to keep the data collection working in parallel with the recruitment and we are relatively on target.

Data analysis

Using participatory approaches, all team members have been trained, and have had practice in, qualitative data coding. Data is currently being coded by the researchers on the paper transcripts; it is then being transferred to NVivo in order to manage the large amount of data effectively. We continue to benefit from the advice of an NVivo expert.

Everyone is now involved in:

Collecting data e.g. interviews, focus groups, mapping
Analysing data
Management and Advisory group meetings
Planning the next stages of the research process e.g. the Big Conversation Day
Developing an abstract for the 2010 INVOLVE conference.

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. They have been helpful in opportunistic recruitment.

Findings to date

We are in the very early stages of data analysis but, as we are listening to the stories that people are telling us about living their lives with a long term condition, early findings show that people feel included in their treatment and in society when:

they are enabled on a macro level through equipment, accessible environments and information
on a micro level through their interactions with NHS staff and people in local communities.

One aspect is not sufficient, both are part of inclusion.

Emergent themes include:

1. Recognition of ‘the person’ as well as their rights and needs.

There is a strong sense that when staff focus predominantly on ‘the problem’, (for example the physical presentation of multiple sclerosis) the goals of that treatment are not necessarily relevant to the service user and therefore outcomes of treatment are compromised. However when service users feel listened to and understood they are much more satisfied with the outcomes of the intervention.

2. Tensions between perceived roles

How users of services (including carers and family members) see their role, based on historical and hierarchical perceptions and their own confidence, can influence the effectiveness of their treatment.

Staff highlighted tensions between their perceived ‘medical/professional’ role and the extra time and energies required for them to recognise what might be important to service users and understand them better.

3. Influencing the choice: making informed decisions:

Where people are included in the decisions about their treatment and life the outcome is felt to be right and comfortable. Making a choice from a pre-determined menu can obscure the real focus of individuals’ hopes and expectations. Seeing changes made, or action taken, based on collective deliberations (in respect of treatment approaches) is an indicator of being heard.

Dissemination

Since the last report the research team has:

Had 2 abstracts accepted for the College of Occupational Therapy Conference 2010
Been invited to contribute to the 2010 Beacon North East workshop series which has a focus on universities and communities working together.
The two MSc students who have been involved with the research have completed their projects. They will present their experience of being involved in the research at the 2010 Occupational Therapy Conference.
There has been a Poster Presentation at Northumbria University’s Staff Development Study day.
Produced two newsletters which keep study participants up to date with project progress and news.
Had an article published in the INVOLVE newsletter: Hutchinson, C., Bell, E., Bond, M., Carter, L., Mitchell, P., Moore, P. & White, A. Towards inclusive living; a record of a research journey. (accessed 12.04.10) http://www.invo.org.uk/pdfs/Newsletter_finalwinter10.pdf

October 2011 update

The study is now complete.