Family caregivers (UK: carers) require support throughout the entire illness of their dying loved one, because they witness and share much of the patient’s experience, says a study published in the BMJ (British Medical Journal) today.
It is well known that terminal (dying) cancer patients experience distress, especially from four key time points:
- At diagnosis
- At home after initial treatment
- When recurrence occurs
- During the terminal stage
Professor Scott Murray, University of Edinburgh, and team now suggest that family caregivers may also experience characteristic patterns of wellbeing and anguish that their loved ones are going through.
The researchers carried out 42 interviews with lung cancer patient and 46 interviews with their family caregivers. They were interviewed every three months for up to a year or until the patient died.
The results show that caregivers were generally in better health than the patients, but any health problems they had could undermine their ability to care.
The authors say that caregivers frequently felt worn out and that they were sharing the illness, especially after some time elapsed and death approached.
They write:
Caregivers, like patients, often felt they were on an emotional rollercoaster, experiencing peaks and troughs at key times of stress and uncertainty in the cancer trajectory.
They concluded that psychological and existential support should be targeted at caregivers at the four key stages of the terminal illness.
They added:
It may also be empowering for caregivers to know that it is common to feel stressed and in need of support at certain times.
Research
Scott A Murray, St Columba’s Hospice professor of primary palliative care, Marilyn Kendall, senior research fellow, Kirsty Boyd, honorary clinical senior lecturer, Liz Grant, senior lecturer, Gill Highet, research fellow, Aziz Sheikh, professor of primary care research and development
Published 10 June 2010, doi:10.1136/bmj.c2581
BMJ 2010;340:c2581
Written by Christian Nordqvist