Caring for someone who is terminally ill can often lead to considerable personal distress. In some cases caregivers may suffer from hopelessness and negative mood, in others they may experience anxiety disorders, clinical depression or other mental or physical health problems.
This Cochrane systematic review assesses the effects of supportive interventions that aim to improve the psychological and physical health of informal caregivers of patients in the terminal phase of their illness.
The review includes 11 randomised controlled trials involving 1,836 caregiving participants. The trials included quite a wide range of mental health conditions and interventions, which may have obscured some of the results.
Overall the evidence found was fairly low-quality.
Here’s what they found:
- Interventions that directly support the family and/or friends help them to cope emotionally, and may help them to cope with their role in caring and improve their quality of life
- There were few assessments of the impact of the interventions on physical health; one study found overall no difference in sleep improvement
- No study looked at whether the interventions increased or decreased the carers’ health service use or looked for potential harms, although higher levels of family conflict was identified in some participants in one trial
- Interventions that aimed to help support the family and/or friends indirectly via patient care, may also help them cope emotionally
- There were no assessments on whether the indirect interventions helped them cope with their role in caring, improved quality of life, increased or decreased their health service use, or had potential harms
- In one of these trials there was no difference in caregiver physical health between those whose friend or relative had received the additional patient care, and those who had not
- The findings of some studies included in this review may be at risk of bias, because they under-report key design features and may have been conducted poorly
The reviewers concluded:
There is evidence that supportive interventions may help reduce caregivers’ psychological distress. These findings suggest that practitioners should enquire about the concerns of caregivers and should consider that they may benefit from additional support. There is, however, a need for further research to explore the benefits identified, and to assess the interventions’ effects on physical health, and potential harms. Trials need to report their methods fully.
Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database of Systematic Reviews 2011, Issue 6. Art. No.: CD007617. DOI: 10.1002/14651858.CD007617.pub2.
No one has ever considered the psychological impact of caring for my partner on me. He has progressive MS and is now in a care home. I do not know from one day to the next what will happen. I have seen him deteriorate physically from a fit young man in his early twenties to someone with complex care needs. This does not prevent him from enjoying an active life when he is well enough but our relationship has changed and I also now have health problems. I am now under pressure to leave our adapted flat as it is not considered to be my home because my partner was the wheelchair user.
The last twenty years has been a struggle to access services that meet his needs and recognise his human rights: I apparently don’t have any. As a carer I am used to being told where to live, how to live and who to live with, usually by professionals who then go home to their own lives than involve more choice and security than mine. If they are feeling generous they will show me their photos – just to rub my face in it.
Glad to see someone taking an interest