Support for carers: an investigation of support needs and the cost of provision
Lead applicant: Prof. Lynne Turner-Stokes, Kings College, London
Start date: Late 2006 End date: late 2009
Email: please contact Dr Diana Jackson for further information about
this research diana.m.jackson@kcl.ac.uk
Background
Our work to date has demonstrated that carers often do not get the support
they need – particularly where the person they care for does not
have obvious physical problems (such poor mobility), but has ‘hidden’ disabilities,
such as difficulty with memory, communication or controlling their temper.
It can be relatively easy to get care agencies to help with tasks like
getting washed or dressed etc, but it is more difficult to get help to ‘mind’ someone
who has a tendency to wander and to make sure they are safe while the family
carer has a few hours to themselves.
This situation can be particularly difficult where the carer has ‘multiple
caring roles’ – that is, they are also the main or sole carer
for children, an ageing parent or for another family member. Carers have
told us that their needs for help can actually be quite modest and inexpensive
to provide, but that current NHS or social care provision is so rigid that
they can only get one type of help, which they may find inappropriate and
also much more expensive to provide. This is clearly in no-one’s
interest, but what are suitable alternatives?
Aims
This study aims to increase our understanding of the problems faced by people who care for someone with a LTNC, in order to learn from their experiences what kinds of support has helped, or what they feel would have helped, if it had been offered.
What we will do and how we will do it
Our approach to this study has been guided by a ‘Project Advisory
Panel’, who have advised us during development of the proposal, and
who will continue to be involved throughout the project.
We will interview carers, based on a ‘semi-structured’ questionnaire
which will be developed in the first 6 months of the study, and will be
informed by our existing work in this area. The questionnaire will be sent
out to participants by post to complete in their own time. This will be
followed up with a telephone interview, to discuss any of the issues raised.
In this way we will obtain some standardised information about people being
cared for, the types of care provided and what support is being provided.
In addition, the questionnaire will include more open-ended questions which
will allow respondents to describe their experiences and needs in their
own words. We are not only interested in numbers, but also in the quality-related
aspects of their experience.
We want to explore people’s experiences from a range of perspectives
- for example, from those caring for someone with obvious ‘physical’ as
compared with ‘hidden’ disabilities; or for someone with a
rapidly progressive condition compared with a stable or improving condition.
We will not restrict participation to any specific diagnosis, but try to
cover a range of conditions. We will need to interview about 260 carers
to reflect a range of experience, and we will select the participants in
such a way as to ensure that at least half have ‘multiple caring
roles’, so that this group is appropriately represented. Through
our various contacts with clinical neurology and rehabilitation service
networks and with voluntary organisations, we will try to ensure that we
recruit carers from up and down the country so that we get a good idea
of what is happening in different areas. We will apply for full ethical
permission to carry out this study.
Clearly, people’s need for support will change as the condition of
the person they care for changes, or as other circumstances change around
them. In a subgroup of approximately 50 carers, we will therefore undertake
three repeat interviews at 4-6 monthly intervals over a period of 1-2 years
to see what changes occur.
Results of the research
From the information obtained in this study we will draw up a set of recommendations or guidelines to help professionals in offering the most appropriate types of support in the future. Our economic analysis will provide information about the likely cost of providing different types of support, so that purchasers and providers of health and social services may have better information about what services to provide and what they are likely to cost. The project will therefore be of benefit to the NHS, local authorities, carers and their families in the future.
Progress reports
Winter 2007 Update
The development phase of this study has been completed and a final version of the questionnaire schedule and follow-up telephone interview guide has been agreed. This was informed by:
- Several rounds of feedback from members of our Project Advisory Panel (comprising six carers and representatives from four voluntary organisations).
- Responses from fifteen carers who completed questionnaires and follow-up interviews as part of the pilot study.
Information about the study is being widely disseminated. Six national voluntary organisations have posted details with on-line reply forms on their websites, and are also mailing details to members in routine newsletters. We are recruiting ‘hard to reach’ carers through organisations such as the Black and Asian Neurological Project Group.
We have obtained research and development approval to recruit carers for the longitudinal study through three neuroscience centres, and are waiting for approval from a further six.
To date, 38 questionnaires have been sent to carers on request and 17 have been returned. Data management procedures are in place. A database with validation rules has been set up and tested so that data entry can proceed efficiently and accurately.
We keep in regular contact with Professor Leigh’s project team (who are researching palliative care needs for people with Parkinson’s Disease and sub-types). We have agreed the content and coding of a core set of demographic data and so three questionnaires will be common to both studies. This will enable pooled analyses to be carried out on some carer data across the two studies.
Summer 2008 update
Data collection is continuing. Early findings from telephone interviews with a diverse range of carers confirm a need for clearly set out pathways to guide them through the process of getting the support they require from statutory and voluntary organisations.
It is becoming much clearer how vitally important it is to take account of the cared-for person and their difficulties, as well as carers’ multiple responsibilities and their desire to participate in activities outside the home. Carers’ ideas for improvements in services are being collated and will contribute to good practice guidelines to inform future service development.
A complementary research project is due to start in Autumn 2008. It will investigate ‘replacement’ (or ‘respite’) care which will extend and complement the findings from this work.
Further information
Download a PowerPoint presentation Support for carers Oct 08 summarising our work to date.
Summer 2009 Update
By 31st December, 2008 round 1 questionnaires had been completed and returned by 234 carers. By 21st April, 2009, 48 more had come in, giving a total of 282 (response rate 81%) and exceeding our target.
By 31st March, 2009 a sub-set of 67 carers had been enrolled to the longitudinal study. To date, 50 (75%) have completed and returned round 2 questionnaires. This is slower progress than expected against the milestone set. Eleven carers have been sent round 3 questionnaires and to date, eight of this group have completed and returned them.
By 31st March, 2009, baseline data for 253/282 (90%) of questionnaires had been checked and entered on the study database. In addition, 37/50 (74%) of round 2 questionnaires had been checked and entered.
Meetings of our Project Advisory Panel continue to take place quarterly. Carer members have expressed an interest in collaborating with the research team in synthesising some of the findings that will inform recommendations for service development.
A search of recent literature on caring in the context of long term neurological conditions has been carried out by one of the applicants, Professor Jennifer Harris, and a research assistant at Dundee University. This work has been written up for publication and has been submitted to the journal ‘Medical Care Research and Review’.
Winter 2009 Update
Full cross-sectional data entry was achieved by 23rd June, 2009, ahead of schedule. However, the process of data checking and cleaning continued for some weeks longer, as the initial analysis got underway. Demographic data, health economic data and outcome measures have now been described and are informing the on-going multi-variate analyses.
By 30th September, 2009, a preliminary report of baseline data had been prepared. The full report is well underway.
Longitudinal data collection and entry is keeping pace with in-coming questionnaires but is not yet complete. Some carers have taken weeks and even months to complete and return questionnaires. It was necessary to leave a gap of at least 6 months between rounds 2 and 3 in order to be sure of capturing change over time so there has been a longer than anticipated delay in sending some of the round 3 questionnaires out.
Meetings of our Project Advisory Panel continue to take place quarterly. Members will be participating in the synthesis of results from some short answer qualitative questions at our next meeting. They are keen to be involved in guideline development.
The completed final report is on track to be submitted to the Department of Health by 30th April, 2010.
