A study looking at loved ones' experience of end of life care at home

Cancer type:

All cancer types

Status:

Results

Phase:

Other

This study looked into the experience of bereaved carers who have had home care services from health care assistants.

More about this trial

Many terminally ill Open a glossary item cancer patients choose to die at home. As the time gets nearer, caring can become more of a strain for the patient’s family and friends.

Health care assistants provide an important part of home care. They give nursing, social and emotional support. They stay with the patient for a number of hours and support the family who are caring for their loved one.

There is little research into

The care they give
The experience of the families receiving this service.

So, it is not clear what works well and what does not work so well.

In this study, researchers talked to

People involved in providing this service
Carers at home who have received this service and whose loved one has died

The main aim of this study was to explore the experiences of carers who have lost their loved ones after caring for them at home.

Summary of results

The researchers found that health care assistants see providing emotional support as one of their key roles. And family carers recognised and value this support.

The research took place in 3 different settings

NHS funded home care service based in a city in the middle of England
Hospice at home service which covers a mainly countryside area in the middle of England
A jointly funded NHS and cancer charity palliative care home service based in a town in the north of England

The researchers interviewed 8 health care assistants (HCAs) and 33 family carers from across the 3 settings.

The research team asked the HCAs about

Their duties
Their relationships with the carers, in particular the emotional support they provided

And asked the family carers about

Their experiences of caring for someone at home
The support they received from HCAs
How much they thought HCAs provided emotional support

The research team recorded all the interviews.

After listening to the recorded interviews the research team found 3 main themes.

HCA’s showed sensitivity and skill in developing relationships with patients and their carers

The family carers thought the HCAs were friendly, caring and genuine.

Family carers highlighted the difference between their regular HCAs and agency staff. They felt agency HCAs were often not as caring.

HCAs combine professional ability with the personal touch

The time HCAs spend with the family means that they can help with the relationship between the family carers and the patient’s doctors and nurses. The family carers saw this as particularly helpful if the relationship was not an easy one.

HCAs could also spend more time explaining the medical equipment and drugs the patient may need.

The trust built up between the HCAs and family carers meant that the carers could have a break. They were reassured that their loved one was well looked after.

HCAs and family carers work together so the patient is able to die at home

The main aim of both the HCAs and family carers was for the patient to die at home.

The researchers found that the HCAs worked with the families to make sure this happened. For example, carers reported that having the HCA present meant they were more able to cope with their loved one dying. There was someone around who could explain what was happening and provide direct support.

In this study the researchers found that HCAs

Provide valuable emotional and physical support to the dying patient and their family
Are able to use their knowledge and skills at the same time as building a relationship with the family

We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (peer reviewed Open a glossary item ) and published in a medical journal. The figures we quote above were provided by the trial team who did the research. We have not analysed the data ourselves.