Qualitative inquiry of cancer caregiving during young adulthood: responsibilities, challenges, teamwork, and social support.

Abstract

Background:Young adult cancer caregivers (YACC) may experience heightened caregiver burden because they take on caregiving during a dynamic time of life. The purpose of this study was to describe YACC experiences, burden, and social support while caregiving.Methods:Grounded by the Cancer Family Caregiving Experience Model and the Stress and Coping Social Support theory, semi-structured interviews were conducted with YACC. Inductive analysis was applied to YACC perceptions of caregiving, and deductive analysis to YACC social networks and social support.Results:YACC (N=34) were primarily between 25 to 29 years of age (38.2%), primarily female (70.6%), non-Hispanic White (91.2%), employed (85.3%), college graduates or higher (53.0%), and caring for a spouse/partner (52.9%). Qualitative analysis of interviews with YACC resulted in 2 themes: cancer caregiving during young adulthood and young adult cancer caregiver social support. In the first theme YACC often did not perceive themselves as caregivers, rather their caregiving responsibilities were viewed as an extension of their relationship with the patient. Further YACC reported developmental-specific responsibilities (eg, caring for young children, being unable to take time off while solidifying careers) which often conflicted with their caregiving responsibilities (eg, managing patient’s medication, attending appointments) and heightened burden. In response, YACC often formed caregiver teams consisting of family, friends, and community members to care for their loved one. In the second theme YACC most commonly reported receiving emotional and instrumental support from their social network. YACC specifically mentioned their appreciation for emotional support provided by other young adults and instrumental support in the form of financial support.Conclusions:YACC faced developmentally specific challenges during caregiving that older adult caregivers may not encounter. The conflict of young adult and caregiving responsibilities resulted in YACC forming caregiver teams. Thus, theoretical approaches to understand and improve caregiver health would benefit from the inclusion of the developmental context of young adulthood. Furthermore, it is crucial that cancer centers tailor supportive services to YACC as the number of young caregivers increases.