References

What do you think of our service?Evaluation of community rehabilitation service for Prolonged Disorders Of Consciousness

(PDoC) patients in a specialist care home from perspective of carers and family.

This is a summary of independent research funded by the National Institute for Health Research (NIHR)’s CLAHRC NWC Programme. The views expressed are those of the author(s)

and not necessarily those of the NHS, the NIHR or the Department of Health.

What is the aim?The aim of this project is to evaluate the

rehabilitation provided by CBIRS through

case studies of patients with PDoC.

The evaluation will be taken from the

perspective of close family members and

key support staff that are involved in the

rehabilitation. This is due to

communication limitations with the

patient group as well as the strong focus

on involving the family and individuals

that work closely with this patient group,

as outlined in the guidelines.

What is PDoC?Patients with prolonged disorders of consciousness (PDOC) are

defined in the Royal College of Physicians National clinical guidelines (2013). This document uses the term to describe states

of awareness that can follow after a severe brain injury. These states are coma, vegetative state and minimally conscious state.

Patients are described as having a disorder of consciousness if

they remain in a state of reduced consciousness for more than 4

weeks after a brain injury. Further assessment will then take

place at different intervals to determine the conscious state of

the patient i.e. vegetative or minimally conscious. The

Community Brain Injury Rehabilitation Service (CBIRS) has a

portion of its caseload that are diagnosed as being in a minimally

conscious state (MCS). For this study, the term PDOC will be used

however the individuals being referred to are currently in a MCS.

The minimally conscious state is defined in the clinical

guidelines (2013) as:

‘a state of severely altered consciousness in which minimal but

clearly discernible behaviour evidence of self – or –

environmental awareness is demonstrated. It is characterised by

‘inconsistent but reproducible responses above the level of

spontaneous or reflexive behaviour, which indicate some degree

of interaction with their surroundings’.

What is next?After gathering quantitative data from our service and

the specialist care home, the next step is to carry out

interviews with carers and family members. From the

interviews, key themes can be identified and feedback

can be evaluated about their experiences of the

rehabilitation service. The qualitative interview data will

be combined with quantitative information about the

input that the service provides to give a rich evaluation of

the rehabilitation service.

The results of this project will be presented to the team

and management of the Community Brain Injury

Rehabilitation Service. It will also be distributed to the

staff and family involved in the project and at the

specialist care home. Further dissemination will be

explored to share with similar services and specialist

conferences. The aim of further dissemination will help to

make other teams aware of the service that is provided

for PDoC patients. The next step for this project would

look at similar services to compare findings which may

lead to improvements in practise for PDoC patients.

Why is it important?There is not a standard rehabilitation programme outlined

in the guidelines as each case is so unique. CBIRS have

developed a rehabilitation pathway rehabilitation practise

for this patient group based on national clinical guidelines

and from research based practice and experience. However,

it has not been recently evaluated and this internship

provides an opportunity to reflect on the rehabilitation that

has been developed for this patient group.

Findings from this project may also be important in shaping

future practise and highlight training needs or

improvements to the service provided. As it is a pilot

project, this could be brought forward and developed to

further research other services that provide rehabilitation

for PDoC patients both local and nationwide. In the aim

that each practise is striving towards a gold standard of the

service they provide.

Most importantly, this project will capture the perspective

of family and carers who are closely involved in

rehabilitation of PDoC patients. The clinical guidelines

emphasise the importance of family involvement in care

and rehabilitation as they experience the process from

hospital to out in the community, and it can be challenging.

This project allows carers and family members to give

feedback and express their experiences.

What method will be used?The project will focus on case studies that are located in one

specialist nursing home. For this pilot project 7 case studies

have been identified from CBIRS clinical caseload.

A mixed methods approach will be used to gain richer

information for the evaluation. Quantitative data will initially

be collected to capture relevant demographic information

and the patient’s clinical pathway, as well as the input

received from CBIRS and the staff at the patient’s care home.

Qualitative data will also be collected using semi-structured

interviews to capture experiences of community

rehabilitation in a specialist care home environment.

There are communication limitations with this patient group

that mean it is not possible to obtain information directly

from them. However, it would be possible to capture

information from individuals that work closely with the

patient and with the team to provide rehabilitation, which

would be the staff at the specialist care home and family.

The perspective and experience of these individuals will not

directly reflect the patients’ views on the rehabilitation they

have received however it is the useful information that can

be used due to the limitations involved for this group of

patients. Interviews will be carried out with 1 or 2 family

members per individual case study as well as the manager of

the care home and an identified key worker.

Leila WilliamsRehabilitation Assistant for the Community

Brain Injury Rehabilitation Serviceleila.williams@bfwhospital.nhs.uk

ReferencesElliot, L. and Walker, L. (2005) Rehabilitation interventions for vegetative and minimally conscious

patients. Neuropsychological Rehabilitation: An International Journal. Vol 15 issue 3-4

Elvira de la Morena MJ, Cruzado JA. (2013) Caregivers of patients with disorders of consciousness:

coping and prolonged grief. Acta Neurol Scand: DOI: 10.1111/ane.12061.© John Wiley & Sons A/S.

Roberts, C., Rudolf Coetzer, B., Vaughan, F. and Robert Rafal (2003) The Journal of Cognitive

Rehabilitation, pp 4-8.

Royal College of Physicians. Prolonged disorders of consciousness: National clinical guidelines.

London, RCP, 2013.

Sarla GandhiPrincipal Lecturer

School of Nursingsgandhi4@uclan.ac.uk