Coventry University & Headway Coventry & Warwickshire Full Report

November 2006

Report for Headway Coventry and Warwickshire

‘Are there unmet needs for people with acquired brain injury living in the Community and what are those needs?'

Introduction

During the summer of 2006 a survey of ongoing needs of people with acquired brain injury was conducted. The research question was:

    "Are there unmet needs for people with acquired brain

    injury living in the community and what are those needs?"

The study aimed to find out how people living in the community with acquired brain injury were managing, and to gain a deeper understanding of any areas of concern or persisting difficulties. The research was a collaborative venture between Headway Coventry and Warwickshire and Coventry University.  Ethical approval for the study was gained from Coventry University Research Ethics Committee.  Participants living in Coventry were recruited from the Headway Coventry and Warwickshire database and were initially contacted by a member of the Headway organisation.  Participants were asked to answer a series of questions and discuss any difficulties they were experiencing.  Participants were also asked to discuss individual goals and services they felt would help address unmet needs.

The information gained from the study will be valuable in determining which services need to be developed to address ongoing needs of people with acquired brain injury.

Results

31 people participated in the survey, of these 7 reports were given by carers, or the person who had been the carer following the injury.

Participants took part in a telephone interview based on a questionnaire. The questionnaire focussed on aspects relating mobility, social functioning, roles and responsibilities, communication and cognition.  The questionnaire also incorporated questions to identify those services which were seen as beneficial in the past and services which are seen as required.  It also aimed to identify specific goals that individuals would now like to achieve.  During the interviews participants were invited to discuss the reasons why difficulties were experienced in order to gain a more complete understanding of the situation of different individuals.  Demographic information was also gathered.

Of the 31 participants, 9 felt they were able to do things which were important and had made a good recovery. 5 of these were employed or attending college and none of the 9 identified additional goals they wished to achieve. This group appeared to have made a good recovery or had managed to achieve an acceptable quality of life, adapting to the effects of their brain injury.

4 individuals required constant supervision and support due to a range of physical, cognitive or behavioural problems.  In these cases reports were given by carers.

Of those who did not fall into the above groups, some required support from other people, usually family and friends, to take part in daily activities and/or to access the wider environment. Others appeared to have adopted a different lifestyle to that experienced prior to the brain injury but not all expressed dissatisfaction with this and seemed able to accommodate a different way of life. In some cases participants expressed concerns in one or more areas, identifying specific goals they would like to achieve.  In many cases the answers given did not fit neatly into the different categories of the questionnaire, there were different factors which enabled or disabled people at different times, therefore the comments to clarify the situation of different individuals was important.

Specific problems discussed

The variety of problems resulting from the brain injury which were raised by participants was very broad and included:

• Physical functioning: problems with mobility, fatigue, epilepsy, dizziness, poor vision.
• Communication: aphasia, word-finding difficulties, confidence in relating to others.
• Cognition: problems with memory, concentration, making decisions, planning and organising, processing information, learning.
• Emotion: experience of depression, anxiety, anger/irritability, lack of confidence.
• Behaviour: managing anger, relating to others.

Rarely were any of these problems experienced in isolation, there was often a combination of different problems which affected the ability to gain employment, go to college, maintain or increase social networks, engage in leisure activities or achieve an acceptable quality of life.

Services perceived as beneficial.

There were a variety of services mentioned in this category; among them were Social Services, hospital counselling services, outpatient rehabilitation, psychology services and physiotherapy services.  The most commonly named organisation was Headway Coventry and Warwickshire.  This service had been highly valued by many as it gave social opportunities, opportunities for support and access to counselling and information. Some expressed regret that Headway Coventry and Warwickshire is at the present time unable to offer its previous level of support.

Services required

Participants were invited to identify any services or support they would find helpful. These included:

• Vocational advice and support, (paid employment, voluntary work or education).

• More opportunities to meet people.
• More opportunities to engage in leisure activities or take up an interest.
• Counselling services.
• Advocacy.
• Information and education (about the condition, management of symptoms, support systems available).
• Anxiety management, anger management, confidence building.
• Financial support to meet the costs of care (funding for carers and support for informal carers).
• Specialist facilities to care for those with ABI.
• Practical support with transport.
• Carers support group.
• Support groups at Headway.

These issues were sometimes directly related to goals and areas individuals would like to develop. The most commonly reported areas are presented below.

Goals discussed

Not all felt they had additional needs as precious goals had been achieved, these individuals did not express concerns regarding achieving future goals. However, personal goals which were discussed included:

• To gain employment, (paid employment or voluntary work).
• To access appropriate educational courses.
• To increase social contact.
• To resume family roles.
• To take part in leisure activities.
• To manage emotion: anxiety, depression, anger/irritability.
• To improve physical health (management of condition or fitness programmes).

Implications for service development

The results of this survey identify a number of areas where services are needed:

• Vocational rehabilitation, to give advice, support and facilitate return to employment (including voluntary work) or education.
• Advice and support with social integration.
• Advice and support to enable leisure activities and development of interests.
• Psychological support to address problems of anxiety, anger/irritability and to build confidence.
• Counselling services.
• Provision of support groups for carers.
• Provision of support groups for people with ABI.
• Improved funding for care (and carers).
• Transport to provide practical support in accessing the wider community.
• Appropriate and timely medical support to assist with the management of symptoms and provide information and education.

The findings of this study will help add weight to the arguments for development of services to meet ongoing needs of people with acquired brain injury and will be presented at appropriate planning and development meetings. Headway Coventry and Warwickshire will keep you informed of any relevant developments.  If you have any comments about the study please contact Headway Coventry and Warwickshire who will forward comments to the researchers.

Acknowledgements

A big THANK YOU is due to all those who took part in the study. Your time and co-operation is greatly appreciated, without your help this study could not have taken place. Also acknowledgements are due to Headway Coventry and Warwickshire and members of the Executive Committee, particularly Jane Boyce for the support and interest which was given. Acknowledgements are also due to Coventry University for enabling the study to commence.

Dr Louise Conneeley, PhD, MSc, DipCOT, SROT, TCert

(Senior Lecturer in Occupational Therapy, Coventry University)

Claire Pavlou, MSc, BSc (Hons), DipBST

(Former Secretary Headway Coventry and Warwickshire, Trainee Clinical Psychologist)