LTNC Research
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Support for carers, particularly those with multiple caring roles: an investigation of support needs and the cost of provision

Lead researcher: Prof. Lynne Turner-Stokes, Regional Rehabilitation Unit, Northwick Park, Kings College, London
Start date: Late 2006

Email:
please contact Dr Diana Jackson for further information about this research [email protected]

Background: Our work to date has demonstrated that carers often struggle unsupported – particularly where the person they care for does not have obvious physical problems (such as the inability to walk or care for themselves), but has ‘hidden’ disabilities, such as difficulty with memory, communication or with controlling their temper. It can be relatively easy to get formal care services to come in at home to help with tasks such as washing, dressing, etc, but it is much more difficult to get help to ‘mind’ someone who has a tendency to wander out into the street, 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 requiring care. Under these circumstances carers can find themselves torn between their different responsibilities. In our current research, 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 is not only inappropriate to their needs, but also much more expensive to provide. This is clearly in no-one’s interest, but what would be suitable alternatives?

Aims: This study aims to increase our understanding of the problems faced by people who care for someone with a long term neurological condition (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.

In this study 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 in more detail any of the issues raised. In this way we will obtain some standardised information about the person they care for, the types of care they provide and the support they have to help them. In addition, the questionnaire will include more open-ended questions which will allow them 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 problems faced by carers of people with a range of neurological conditions - for example, 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. Our current experience suggests that we will need to interview about 260 carers to reflect the range of problems, and we will select the participants in such a way as to ensure that at least half have ‘multiple caring roles’, so that this vulnerable 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 the problems in different areas. We are in the process of applying 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 how their need for support changes – either as they adjust to their changed circumstances, or as the person they care for gets better or worse.

Project outputs: From the information obtained in this project 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 these types of support, so that purchase and providers of health and social services may have better information about which types of services to provide and what it is likely to cost. The project will therefore be of benefit to both the NHS and to carers and their families in the future.

 

 
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