Psychosocial and Support Needs of the Main Caregiver for Adolescents and Young Adults Undergoing Treatment for Cancer

BACKGROUND: Family relationships and social networks are critically important to adolescents and young adults (AYAs) with cancer, impacting their experience and well-being throughout the cancer trajectory. A cancer diagnosis impacts the development of independence and an adult identity, which can present challenges to psychosocial well-being needs and relationships between caregivers and AYAs.

OBJECTIVE: The aim of this study was to explore the psychosocial and support needs of the main caregivers of AYAs.

METHODS: This is a secondary analysis of the BRIGHTLIGHT caregiver survey, exploring items pertaining to support offered/engaged with, appraisal of helpfulness, and caregivers' emotional and psychological distress experience. Descriptive statistics, a correlational analysis, and a 1-way analysis of variance were conducted.

RESULTS: There were 518 caregiver responses (62%). Over half received information about their caregiving needs, with the majority finding this very/fairly helpful. Most (80%) of those who had not received the information would have valued it. High levels of negative emotional and psychological well-being were reported, with 91% feeling depressed or anxious since the AYAs' diagnosis and 41% always/often experiencing these feelings. Total distress was associated with being younger, a parent, female, and unemployed, and earning a below-average income.

CONCLUSIONS: The needs of caregivers are broad and multidimensional; however, some characteristics were associated with higher distress. When caregiver-specific information was provided by healthcare professionals, it was well received.

IMPLICATIONS FOR PRACTICE: Healthcare professionals should consider caregivers' needs individually and provide/signpost to support. Caregivers need to be involved in designing and implementing future research, given the heterogeneity of needs identified.