Carers of people with LTNCs & respite/replacement care

Lead Applicant: Prof Lynne Turner-Stokes, Kings College, London
Start date: October 2008. End date December 2010.
Researcher, email: diana.m.jackson@kcl.ac.uk

The Final Report is now available for download.

Background

People who take on the responsibility of caring for a relative with a neurological condition play a critical role in lightening the load on health and social services but often experience persistent fatigue, stress and ill health due to the physical and emotional demands of the role. If they cannot leave the home to work, further their education or enjoy time out, their quality of life can be diminished even more. 
Access to replacement care can make a big difference, whether this involves someone coming in to the home or a residential stay. However, good quality care of this kind can be hard to come by. Currently, we do not know enough about the types of replacement care that would be of most benefit to the wide range of people who need it, making it difficult to develop improved services for the future. 

Aims

The aims of this research study are to:

  1. examine and contribute to definitions of the concepts ‘carer’ and ‘respite/replacement care’;
  2. increase our knowledge of the availability, suitability and flexibility of different models of replacement care;
  3. identify the essential components of good quality care;
  4. evaluate the potential cost implications of future provision of replacement care to inform service development for carers.

What we will do and how we will do it

In this study, guided by an advisory panel of carers, we will set up a postal/web-based survey to find out if carers of people with a range of neurological conditions can get the replacement care they need, whether past experiences of this type of care have been good or bad and what in their view a 'five star' service would be like. From past experience we anticipate responses from at least 300 carers nationally. We will also carry out 'own language' interviews with about 50 Indian and African Caribbean carers to ensure we reach out to people from diverse backgrounds.

Results of this research

The findings will inform best practice in replacement care provision and underpin guidelines to assist in developing flexible services that meet carers’ needs. Our economic analysis will show purchasers and providers of health and social services the likely cost of providing different models of care. The study will therefore benefit the NHS, carers and their families in future.

Further information

Download a PowerPoint presentation Support for carers Oct 08 summarising our plan for the study.

Progress Reports

Summer 2009 Update

Ethics approval has been obtained and a new research associate, Dr. David Williams, has joined the team.

Themes have been extracted from an existing dataset of carer experiences in acquired brain injury (ABI).  This data was collected in an earlier DH funded study of ABI carer experiences (project code 030/0066).  Additional issues raised by carers who are participants in our other current study (project code 053/0007) are complementing these themes and will inform survey development.

Version 1 of the questionnaire has been reviewed and discussed by the project advisory panel.  Some changes have since been made and further rounds of pilot testing are on-going.

A range of web-based survey software has been examined and pre-tested.  Survey Methods has been found to offer the best package in terms of:

Winter 2009 Update

A questionnaire was piloted with 10 carers and discussed with advisory panel of carers. Subsequently revisions were made and approved by ethics.

Nineteen online survey packages were reviewed and Survey Methods was identified as being most appropriate for this study. Survey Methods can in effect be used as a database in which paper questionnaires can be entered and online responses are automatically recorded.

An information sheet for carers has been produced and is available through the post or via our website: http://www.kcl.ac.uk/schools/medicine/depts/palliative/arp/eval/carers.html.

Contact has been made with known representatives of voluntary organisations plus a number of new organisations, including organisations representing people with rare conditions, e.g. Charcot-Marie-Tooth Disease. In total 16 organisations have agreed to help us publicise our survey and information is currently available on websites and/or in the newsletters of four of them. The others will begin to disseminate information about our survey over the coming months.

The survey is up and running, the first questionnaires were sent out on the 18th September 2009. Currently 28 carers have requested a questionnaire (13 requested a paper questionnaire and 15 an online questionnaire). Fifteen have been returned (6 paper, 9 online).  We aimed to provide an online form on our webpage for carers to request a survey automatically. We have had technical problems and have been unable to provide this but hope to do so in the near future.

An interview schedule for interviews / focus groups with BME carers has been developed and approved by the research ethics committee. We will shortly begin work with two BME organisations, The Afyia Trust and Cancer Equality, on the translation of documents and recruitment of BME carers for interviews and focus groups.

Project Advisory Panel meetings take place quarterly.  Members have made an invaluable contribution to the questionnaires (both paper based and web-based) through their appraisal of the content and style of presentation and by taking part in the pilot.

Summer 2010 update

Information about our survey is now displayed on our website and on websites and/or newsletters of 31 carer or LTNC charitable organisations.
http://www.kcl.ac.uk/schools/medicine/depts/palliative/arp/eval/carers.html

Recruitment

As of April 2010 we have recruited 144 carers and are working with Afyia Trust and Cancer Equality to identify and recruit BME carers. We have also conducted one focus group and one interview with BME carers. However,
recruitment of BME carers has proved problematic. To try and solve this we have searched for additional organisations and re-contacted the organisations already helping us, to ask them for additional help and ideas. In some cases they have put our notice back in their newsletters/homepages of websites, and some have used Twitter and Facebook to boost publicity. We have also tried going directly to individual branches / local support contacts of these organisations where possible, as well as via their websites and newsletters. We have also followed up with contacts to boost BME carer recruitment, and attempted ‘snowballing recruitment’ from the carers and professionals who have already taken part or provided advice.

User involvement

The Project Advisory Panel continues to make an invaluable contribution to the study. It has been expanded to include people with different experience of LTNCs (MS, Charcot-Marie-Tooth Disease, Head and Spinal Injuries).  Members are currently advising us on how best to boost recruitment and our work on defining what it means to be a ‘carer’.

Defining terms

We are now undertaking work on how best to define the terms ‘carer’ and ‘respite and replacement care services’. We have liaised with the representatives of carer organisations (Princess Royal Trust for Carers and Crossroads Care) and with a representative of the Department of Health on this issue.

 After discussion with our Project Advisory Panel we are now planning a survey of carers of people with LTNCs. By doing this we hope to provide a LTNC perspective on what it means to be a carer and what is required of respite/replacement care services.

October 2011 update

The study is now complete.

 

 

Valid CSS! Valid XHTML 1.0 Transitional