Caregivers of patients with terminal cancer were up to seven times more likely to experience mental distress than the general population, according to findings published in Palliative Medicine.
Caregiving offers vital support to patients towards end-of-life, but also impacts the caregivers’ own health, according to Gunn Grande, PhD, from the University of Manchester, England, and colleagues.
“If carers can no longer cope or function, then patient care also suffers, and inpatient admission becomes more likely,” Grande told Healio Internal Medicine. “This is often not what patients want and is more costly for health care services.”
Grande and colleagues administered a national 4-month post-bereavement postal census survey to 1,504 family caregivers of patients who died of cancer to investigate their psychological morbidity and general health during the patient’s last 3 months of life, compared with the general population.
The researchers found that caregivers of the terminally ill had significantly greater levels of clinically high psychological morbidity than the general population (83% vs. 15%). Clinically high psychological morbidity was defined as a level in which further clinical investigation is needed or the ability to concentrate, make decisions or deal with problems is compromised, according to the researchers. The prevalence of psychological morbidity was five to seven times higher among caregivers across all age groups.
Additionally, caregivers had lower general health scores than the general population (median, 75 vs. 80). Health score differences were more significant at younger ages. Psychological morbidity and general health were worse among female caregivers than male caregivers.
The scale of psychological suffering that caregivers endured when caring for the terminally ill was surprising, according to Grande.
“The impact of caregiving on carers’ health can be ameliorated through better support. We know that carers need support to enable them to care for their family member as ‘co-workers’ and to look after their own health and wellbeing as ‘clients,’” she said.
Health care providers play an important role in supporting caregivers, she said.
“Most carers have no healthcare training, but are expected to take on the responsibility for the care of someone who is dying,” Grande said. “Not being prepared for the role and learning by trial and error is a source of considerable carer stress and distress.”
“Practitioners can here make a considerable difference by ensuring that carers have information and sufficient preparation they need in terms of understanding the patient’s illness, knowing what to expect, knowing who to contact if there is a problem, managing symptoms and medicines, or personal care,” she added. “The important thing is to ask what the individual carer is struggling with. Practitioners’ own assumptions are often wrong and what seems like a small problem to a practitioner may be a cause of considerable concern to a carer.”
Early prevention is also an important factor and physicians should screen caregivers for mental health problems, according to Grande.
Caregivers are often the foundation of patient care as they provide a median of 70 hours of care per week, she said.
“The main starting point is to identify who a patient’s main carer is and ask about their support needs, separately from the patient’s,” Grande said. “Carers may not identify themselves as carers and will normally not ask for help for themselves.” – by Alaina Tedesco
Grande reports funding from Dimbleby Cancer Care.