Patients with cancer are often aided by friends or family who serve as informal caregivers. These informal caregivers, however, frequently undergo stress while providing care. The Measure Yourself Concerns and Wellbeing (MYCaW) tool was developed to help track the well-being of people affected by cancer. For the first time, researchers have now developed a framework to apply the MYCaW specifically to the needs of informal caregivers, according to a study recently published in Supportive Care in Cancer.
Informal caregivers for patients with cancer represent an estimated 1.1 million people in the United Kingdom and 7% of all informal caregivers in the United States. These caregivers must balance their own psychological distress from the diagnosis with their employment or other responsibilities while tending to patient care. Their psychosocial well-being is often impacted.
The study’s researchers first assessed informal caregivers’ concerns through an online survey of informal caregivers (n=21) in the United Kingdom, which formed the basis of a new coding framework that was piloted (n=76) and finally refined (n=144).
Two themes of concerns — for self and for those regarding the patient — formed the main structure for the framework, with 5 categories of concern prominent in each. Physical, emotional, and psychological concerns were included for self, as well as concerns around a change in identity and providing support.
Concerns around the patient included relationship and practical concerns, as well as the physical and psycho-emotional health of the patient, in addition to possible end-of-life issues.
Within each area of concern, particular items, such as sleep problems, grief, pain, and mood changes, can be identified. Development of the MYCaW tool with input from informal caregivers can potentially allow it to be a powerful aid in assessing and addressing the needs of this population.
Jolliffe R, Collaco N, Seers H, Farrell C, Sawkins MJ, Polley MJ. Development of Measure Yourself Concerns and Wellbeing for informal caregivers of people with cancer—a multicentred study[published online September 11, 2018].Support Care Cancer. doi: 10.1007/s00520-018-4422-8