Carers feel guilty and isolated, regional survey finds

Categories: Research.

A study carried out by Nottinghamshire Hospice has found that people caring for someone with a terminal condition across the region often feel guilty, lonely and disempowered.

Those in caring roles also take less care of their own wellbeing, often feel exhausted, and their work and study suffers, according to the focus group conducted with the Greater Nottinghamshire Cancer Forum.  The research, carried out as part of the hospice’s Public Patient Engagement commitment, involved interviews with 31 past and present carers of hospice patients.

Of those surveyed,  84 per cent found it hard to look after their own health, 87 per cent agreed that caring made them focus less on their own happiness and wellbeing, 78 per cent said they felt lonely and 94 per cent felt guilty that they were not doing enough for the person they cared for.

Nearly two thirds said they had lost independence, more than 80 per cent felt exhausted, and 69 per cent felt their caring role had negatively affected their ability to work or study.

The findings mirror research carried out nationally by Carers UK in the State of Caring report in which carers reported feeling isolated, depressed and unsupported, and said that their own health had taken a lower priority as a result of their caring role.

One respondent of Nottinghamshire Hospice’s survey said:

“I gave up temporarily my place of work (my own shop), and the abysmal carers allowance went towards paying the rent for the premises, but I knew I had to keep it as when my partner passed away it would be my only source of income.”

Social life, time with family and other activities outside the caring role also suffered, as another respondent commented:

“At times I feel overwhelmed and isolated. Family and grandchildren used to stay but can’t now. I do not have time to attend support groups due to my caring role. I cannot plan anything as it may need to be cancelled.”

Those surveyed ranged in age from 18 to over 85 with the majority being in the 65-84 age bracket. More than two thirds were women.

Asked about support, responses were appreciative of the help Nottinghamshire Hospice provided, but several people felt the services offered should be expanded.

“The hospice does a wonderful job with limited resources – I feel that if support could be increased it would make a difference.”

However some people felt other agencies were less helpful:

“Support promised by the majority of agencies failed to materialise” and “You only seem to get to know what is available after the person has passed away.”

Liz Morgan, Clinical Nurse Specialist at Nottinghamshire Hospice, who commissioned the study, said:

“The survey has highlighted that the need is great and the burden and guilt felt by carers is often overwhelming. It has also highlighted that they care, by themselves for long periods of time, with little support and can often feel isolated.

“Carers are often older and their own health needs come second to those they are looking after. Families are complex and there is often an assumption that family members will help when for whatever reason they cannot.

“It was felt that hospice services were supportive but again these were not always sufficient, so we are now looking at the responses and suggestions to see how we can develop and shape our services appropriately.”

For more information visit Nottinghamshire Hospice