Cultural Values Influence on Rural Family Caregivers' Decision-Making for Ill Older Adult Loved Ones

Abstract

ContextRural older adult Americans receive more intense treatment at end of life. Studies indicate that those who participate in goals of care conversations receive care more concordant with their values. Yet, rates of documented goals of care discussions are lower in rural and Black communities. Although multi-factorial, the role that rural family caregivers (FCGs) play in decision-making for ill loved ones is understudied. ObjectiveThis study aimed to explore rural FCGs cultural values, beliefs, and attitudes about serious illness and treatment decision-making and to understand how these factors influence their decision-making around goals of care for their family members. MethodsThis is an embedded qualitative study within a tele-palliative care consult randomized trial that the PEN-3 theoretical model guided. Semi-structured interviews were conducted with FCGs who had completed study participation. Thematic analysis was used to analyze the data. ResultsTwelve rural FCGs center their decisions around core values, and the decision-making experience was supported by faith. A model of how the key themes and subthemes interact around the central space of supporting the seriously ill loved to demonstrate the complexity of caregiving when race and rurality intersect is presented. ConclusionThis study is a foundational step in understanding how rural FCGs beliefs and values influence decision-making. We recommend incorporating those constructs into the development of culturally responsive decision-support interventions.