Meeting the needs of family members who give care and support to an adult with a long-term neurological condition

Are you the main person spending time every day providing care and support for a family member aged 18-65 with epilepsy following a brain injury - and finding life difficult?

If the answer is ‘yes’, are you getting the help you need?

If you are not getting the help and support you need, or believe that services could and should be improved, you can make your views known by contributing to a questionnaire study that is investigating this very problem.

A team from King’s College London have been commissioned by the Department of Health to carry out this study across the UK as part of the Government's National Service Framework (NSF) for Long-term (Neurological) Conditions.*

The aim is to inform the development of better support services for people who care for adults of working age with acquired neurological conditions, such as head injuries or brain infections that can sometimes lead to epilepsy.

There are two ways you can contribute:

If you are going through a period of adjustment in your life, for example, if the person you look after has recently left hospital and things are not going well at home, we would like you to tell us about these problems now and twice more over the next year. This is so we can better understand your needs and how well you are being supported by health and social services during a time of change.

If your situation has been the same for some while, we would be interested to know about any current problems you have, whether your support needs are being met, and any ideas you may have as to how services could be improved in the future.

What exactly will I be asked to do if I take part?

We will post you a set of questionnaires to fill in and return to us. Most questions involve ticking a box, circling a number or writing a short sentence. We will ask for:

• General information about you and the person you are caring for.
• Whether you are working or studying, if you have given up work or study because of your caring responsibilities and details about any benefits you receive.
• How epilepsy affects the person you care for in terms of their ability to do things for themselves, and the time you and others spend helping them.
• How much distress you experience as a result of the various difficulties that sometimes crop up when people take on a caring role.
• The level and type of contact both you and the person you care for have had with health and social services over recent months.
• Whether you have received help for managing your own problems or not, and what extra help or support would allow you greater choice in your life.

When we receive your questionnaires back, we will telephone you at a time convenient to you to help with any questions you were unsure about, and to give you the opportunity to tell us about any problems that were not covered.

With your permission, we would like to record the call so we can be sure that we have understood your views correctly. If you are unhappy about this, we will just make notes. Any recordings that are made will be destroyed once they have been checked over.

All the information collected about you will be kept strictly confidential. Your name will not appear on any of the forms as we will give you a code number instead. Only the study researchers will be able to trace you from this number.

Will the study benefit me or affect me in any way?

We cannot promise the study will help you, but the information we get is likely to benefit the NHS as well as people who take on a caring role and their families in future. If we can obtain information from lots of people, we will be in a much better position to advise on how services can be improved overall.

Some people may find it upsetting to answer questions about the difficulties they face, both when completing the questionnaires and during the follow-up telephone interview. On the other hand, our previous research has found that talking about experiences can help people to understand their caring situation better.

If you would like to know more, you can do one of three things:

• Phone Diana Jackson or Dee Howley on 0207 848 5582 or 0207 848 5418,
• Email the LTNC Care Research Team at carestudy@kcl.ac.uk, or
• fill in the online form. These will then be sent through to the research team.