How to care for carers

It is well established that most people would prefer to die at home rather than in hospital. The family members or friends who make this possible (carers) play a vital role in sharing care with the health care professionals involved.  Just as the patient has complex and immediate needs, so does the carer. The carer provides the support needed to help someone close to them spend the last stage of their life in the familiar surroundings of their own home, within their own community.

Caring for people who are dying is stressful on multiple levels. Many carers are elderly or infirm and find themselves in situations for which they have had little preparation. Others have to juggle conflicting roles within families – for example as care-givers to relatives and as parents to young children – as well as fitting care around paid work. Pioneering research into the day-to-day experiences of a range of people who have recently provided this kind of support to family or friends has led to the development of an accessible but comprehensive tool for assessing the support needs of carers – and thus providing a point of reference for putting that support into place. 

The Carer Support Needs Assessment Tool (CSNAT) has been developed by Dr Gail Ewing, a senior researcher at the Centre for Family Research, University of Cambridge, in partnership with Professor Gunn Grande at the University of Manchester. Both have long experience of palliative and end of life care research, particularly with carers.Their work was carried out in collaboration with the National Association for Hospice at Home.

The CSNAT is based on findings from a study of 75 recently bereaved carers who had cared for a relative or friend at the end of life. Participants shared their experiences with researchers in interviews and focus groups which explored carers’ support needs, particularly in the last two to three months of the life of the person they were caring for. Carers were asked about support needs that were met and input from services that was perceived to be helpful, but also shortfalls in provision where needs had not been met. This enabled the researchers to identify key support domains (areas) for carers at the end of life.

One of the support domains is the matter of knowing who to contact about concerns. “We found that carers often had little knowledge of healthcare systems and who they should contact for help. What appeared to make a real difference was whether the carer had a main contact for support. This was not just a telephone number, but it was a person: someone who they could contact who knew their situation – who could be reached both in the daytime and out of hours.  Carers did not necessarily make use of named contacts a great deal but reported reassurance from knowing that there was a person they could call if needed,” said Dr Ewing.

“Our study with bereaved carers showed us that the needs of carers fell into two groupings: support to enable them to care for their relative/friend, but also more direct support for themselves, arising from the impact of their caring role. We built the tool around that understanding.”

Seven of the 14 domains on the tool ask the carer about the support he or she needs in order to fulfil the role of carer to a dying relative or friend, such as ‘do you need more support with managing your relative’s symptoms, including giving medicines?’  The second set of domains asks the carer about the support they need for themselves, such as ‘do you need more support with dealing with your feelings and worries?’

The CSNAT was designed as a screening tool to identify which of the 14 areas of support needs require further detailed assessment, thus enabling it to be short but comprehensive in approach. “The intention is to use it to use it to open up a conversation between practitioners and carers to explore, from the carers’ perspective, what their support needs are and what it most important to them,” explained Dr Ewing.

In 2009-2010 the tool was validated when 225 adult carers were surveyed twice – a baseline survey was followed by a second survey four weeks later where carers completed the CSNAT along with standard measures of the impact of caregiving, preparedness to care and carer health.

Carers’ needs may change over time due to shifts in the situation and the burden of continuing, often escalating, practical and emotional demands. Study findings suggested that the assessment tool was relevant and covered all the main support domains; feedback indicated that that the CSNAT was quick and easy to use. It was also seen as giving carers a voice: one former carer remarked that she felt she “could be heard through this”.

The study found that most carers wanted more support with knowing what to expect in the future and dealing with their feelings and worries. “In end-of-life care, carers often find themselves entering a world they are unfamiliar with – and find themselves coping with medications and equipment they know little about. They may need information about the drugs, or instruction about the equipment and devices they are handling,” said Dr Ewing.

“The assessment tool allows them to voice their worries about aspects of the care they are providing. Just as importantly it offers a framework that recognises the important role they play and legitimises their own needs. The way in which professional support is offered is vital. Sometimes it can be something very simple:  carers may just want to be included in aspects of the care of a loved one or even just to have acknowledgement of role they are playing.”

If you would like further information about the CSNAT, please contact Dr Gail Ewing ge200@cam.ac.uk.