The rising incidence of cancer and successes in its treatment mean that an ever increasing number of people are living with cancer. This is leading to the involvement of more and more informal caregivers in their care. In a new Cochrane Review from June 2019, Charlene Treanor from the Centre for Public Health in Queen’s University Belfast in Northern Ireland and colleagues looked at the evidence on the effects of psychosocial interventions for these people. We asked her to tell us about their findings in this podcast.
"Informal caregivers, meaning those people who are not paid or trained healthcare professionals, play an important role in supporting individuals affected by cancer. They include family members, friends and neighbours and the type of support they provide is wide ranging. Among other things, it includes going to hospital appointments, taking on additional household roles such as shopping and cooking, and providing emotional support.
Informal caregivers can spend up to 30 hours a week providing care, often in addition to their job and any other family caring roles they have. This additional role, coupled with having to come to terms with the cancer diagnosis of their loved one, can impact on all aspects of their health including increased fatigue, disturbed sleep and impaired quality of life.
Formal support for informal caregivers is often limited or absent, but it’s important to know whether there are things that might be done to help them. We’ve looked at this for psychosocial interventions designed to inform, educate and increase the coping capacity of informal caregivers through an interaction with a healthcare professional. We wanted to see if this might improve outcomes for informal caregivers and, perhaps, for the individuals living with cancer.
We identified 19 trials covering a range of psychosocial interventions including psychoeducation and psychotherapy delivered face-to-face or by telephone to groups of caregivers, pairs of caregivers and patients (usually spouses), or individual caregivers. Almost 2000 caregivers and just over 1700 patients took part in the studies. All were from high income countries and, given the differences in resources which mean that informal caregivers in lower resource settings might take on caring tasks more akin to those of a healthcare professional, their experiences and need for support are unlikely to be represented by this review.
Disappointingly, we found that psychosocial interventions did not help with the health or wellbeing of informal caregivers or patients. And although there did seem to be a small benefit for caregiver global quality of life immediately after the intervention, this did not last. Indeed, some interventions even had a negative effect, including discomfort related to the intervention’s content, distress for caregivers who had previously low distress, and negative changes in relationship satisfaction.
There may be several reasons for the lack of benefits. For instance, it wasn’t clear if caregivers were included in the design of the interventions, so those being tested might not have addressed their needs appropriately. Moreover, caregivers with a history of, or current psychological illness were excluded from the research, and these might be those in most need of the help.
We identified 13 ongoing studies and it will be interesting to see how these add to the current evidence, although the interventions being tested appear similar to those already included in the review. However, it may be that the interventions are effective for other important caregiver outcomes such as relationship quality and these outcomes should be captured in future updates of our review. Looking further into the future, research needs to be done for caregivers in low and middle income countries and for caregivers most in need. The researchers doing these trials should also involve caregivers in intervention design and development.”