What Mattered Then, Now, and Always

Illness Narratives From Persons of Color

C. Robert Bennett, CPNP-AC, MSN; Nadia Shive, BA, CCRC; Heather Coats, PhD, APRN-BC


Journal of Hospice and Palliative Nursing. 2020;22(5):392-400. 

In This Article


This study contributes valuable insight into the experiences of persons of color living with serious illnesses and novel information about how their illness experiences influenced their life but did not define their whole personhood. Family presence and relationships played significant roles in shaping the participants' identities prior to illness, during illness, and beyond the present (ie, who they aspire to be), and these can also shape their priorities during each of these stages. Providing patients the opportunity to define and express their character through formation of narratives may inform health care providers' understanding of patients' coping style, coping resources, health care beliefs, and preferences for care. Knowledge obtained from creating illness narratives may be different from knowledge shared in questionnaires. Utilizing illness narratives may also overcome barriers such as literacy or discomfort disclosing personal information in the form of a written questionnaire while providing more in-depth, authentic information. Narratives from persons of color with serious illness can inform nurses' understanding of patients' illness experiences and enhance communication between nurses and patients. Improved communication may provide opportunities for the type of culturally congruent care that leads to improved QOL and can lessen suffering for persons of color with serious illness.