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 [email protected]

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:

  1. Several rounds of feedback from members of our Project Advisory Panel (comprising six carers and representatives from four voluntary organisations).
  2. 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.

Summer update – 2010

Data analysis and report writing is ongoing.

  1. A first draft of the cross-sectional quantitative analysis was completed early in March 2010.  The health economic analysis had been run towards the end of 2009, but was subsequently re-run in the light of new questions arising as the findings took shape and new insights emerged.  We have since carried out some further analysis and are re-visiting some sections in the report to expand on these findings.
  2. The longitudinal data has taken longer to come in than we had hoped.  As stated previously, some carers have taken weeks to return questionnaires.  We are reluctant to chase them, especially those caring for adults with end-stage progressive conditions.

User Involvement

During the past six months, we have held two meetings during which Project Advisory Panel members have actively contributed to our data analysis. Consensus discussions with Panel members have followed and will strengthen the authenticity of our report.

Data analysis

We have a sizeable, comprehensive and very rich dataset comprising both quantitative and qualitative data.  It has proved challenging to analyse, describe and distil our diverse findings into a single concise report. We are therefore separating cross-sectional from longitudinal components and will report on each separately. Even then, there will still be a wealth of qualitative data to look at in greater depth, which will be documented additionally.  This is not a problem, more a matter of having to plan for on-going analysis and dissemination beyond our previously anticipated milestones. 

We will be pooling some data with that collected on carers of people with late-stage Parkinsons Disease, Multiple System Atrophy and Progressive Supranuclear Palsy in Professor Leigh’s study when this is completed.

 

 

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