Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs

Abstract

AYAs with cancer (aged 15 to 39 at primary diagnosis) form a specific group within oncology, and there is limited information on the impact on their informal caregivers. This scoping review aimed to gain insight into the burden on caregivers of AYAs with cancer and identify the unmet needs they might have. Eligible articles focused on impacts in one of the domains of caregiver burden (physical, psychological, social, on schedule, financial) or unmet needs. In all domains of caregiver burden, impact was reported by caregivers. Caregiving leads to physical problems (such as sleep problems) and psychological symptoms (e.g., depression, anxiety, and negative emotions). Loneliness is reported, and little peer-support. Many different tasks and roles must be undertaken, which is perceived as challenging. In addition, there is a financial impact and there are unmet needs to be met. Several domains of the lives of caregivers of AYA cancer patients are negatively affected by the disease. Some of these are age-specific, and tailored to a particular group of caregivers (parents, partners, or friends). AYA cancer patients represent a wide age range, resulting in the engagement of many different caregivers. Future research will need to take this into account in order to adequately provide support.

Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP)

“…Consequently, taking care of an AYA cancer patient with a UPCP could result in caregiver burden, defined as “the extent to which caregivers perceive that their physical health, psychological health, schedule, social life, and financial status have suffered due to providing care for a cancer patient” [ 4 ]. Our recent review shows that informal caregivers of AYA cancer patients experience impact in each of the domains of caregiver burden [ 5 ]. Aside from the fact that caring for a patient of AYA-age is already demanding, research shows that taking care of someone with advanced disease could entail an additional burden.…”

“…They provide practical as well as emotional support for the patient. Caregivers oftentimes report negative emotional states related to caretaking and they face age-specific challenges related to the young age of the patient (e.g., an altered future for their partners) [ 5 ]. Consequently, the diagnosis and disease trajectory may affect the relationship with their caregivers.…”