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

Shena Gazaway; James Nicholas Odom; Ivan Herbey; Margaret Armstrong; Felicia Underwood; Tametria Vantrice Heard; Ashley Allen; Christiana Ekelem; Marie A Bakitas; Ronit Elk

doi:10.1016/j.jpainsymman.2024.04.012

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

J Pain Symptom Manage. 2024 Apr 18:S0885-3924(24)00718-8. doi: 10.1016/j.jpainsymman.2024.04.012. Online ahead of print.

Authors

Affiliations

¹ School of Nursing (S.G., J.N.O., M.A., M.A.B.), University of Alabama at Birmingham, Birmingham, Alabama, USA; Center for Palliative and Supportive Care (S.G., J.N.O., F.U., C.E., M.A.B.), University of Alabama at Birmingham, Birmingham, Alabama, USA. Electronic address: gazaways@uab.edu.
² School of Nursing (S.G., J.N.O., M.A., M.A.B.), University of Alabama at Birmingham, Birmingham, Alabama, USA; Center for Palliative and Supportive Care (S.G., J.N.O., F.U., C.E., M.A.B.), University of Alabama at Birmingham, Birmingham, Alabama, USA.
³ School of Health Professions (I.H.), University of Alabama at Birmingham, Birmingham, Alabama, USA.
⁴ School of Nursing (S.G., J.N.O., M.A., M.A.B.), University of Alabama at Birmingham, Birmingham, Alabama, USA.
⁵ Center for Palliative and Supportive Care (S.G., J.N.O., F.U., C.E., M.A.B.), University of Alabama at Birmingham, Birmingham, Alabama, USA; School of Medicine, Division of Geriatrics (F.U., C.E., R.E.), University of Alabama at Birmingham, Birmingham, Alabama, USA.
⁶ Russel Medical Center (T.V.H.), Alexander City, Alabama, USA.
⁷ Anderson Regional Medical Center (A.A.), Meridian, Mississippi, USA.

PMID: 38641135
DOI: 10.1016/j.jpainsymman.2024.04.012

Abstract

Context: Rural 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.

Objective: This 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.

Methods: This 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.

Results: Twelve 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.

Conclusion: This 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.

Keywords: Family caregiving; older adult; qualitative research; rural caregiving; serious illness.