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


The themes derived from the participant illness narratives of time, life changes, and family demonstrate how multiple contextual factors contribute to the lived experiences of seriously ill persons of color. Within these illness narratives, one can begin to understand the patient as a whole person. They describe their identities that are not linked to their illness, describing themselves as persons prior to being ill. Consistent with Newman's[7] theory of health as expanding consciousness, they all described how their illness experiences may have impacted their personhood in their social, spiritual, psychological, and physical domains.

In relation to the participants' illness, specifically, the description of time was very prominent, whether it was being discussed in past, present, or future tense. Participants relayed that the ability to have positive psychological, social, or spiritual outlooks helped them through difficult "times." In the narratives, there were descriptions about waiting, worry of the unknown, and uncertainty, and how these experiences made the participants feel a lack of control over illness. Time expressed as past, present, and future was an important factor discussed in reference to participants' personhood. Participants reported their perspectives changing over the course of time, which is additionally supported by literature describing patients experiencing clarity in what they value.[19] Many of the participants were waiting for something: to receive an organ transplant, to complete treatment, to feel better, and to return to a "regular" life. Waiting—and its associated loss of control—may contribute to physical and emotional suffering.[19] The phenomenon of suspended time while waiting has been documented in patients receiving palliative care, especially waiting for treatments and appointments.[19]

Within the theme of life changes, none of the participants described negativity in the existential domain. This even includes 3 participants who did not discuss spirituality. The 17 participants whose narratives included spiritual content described this domain as a highly important part of their lives. The participants linked their meaning and purpose for living to spiritual beliefs and values. Some of these meaning/purpose statements link to the theme of family.

In the theme of family, the participants described their concept of family with various compositions. This is consistent with the definition of family as suggested by the National Coalition for Hospice and Palliative Care.[2] Family includes the family of origin and/or the family of choice, as defined by the person.[2] More than half of the participants (13/20) described their family as having a nuclear structure, explicitly including their siblings, spouse or significant other, children, stepchildren, and grandchildren. Other family structures included naming either a single parent or adult child as a primary supportive family member. When analyzing frequency of mention based on ethnicity, there were apparent similarities between groups. An exception is that the grandmothers were mentioned more frequently among the Hispanic/Latino participants than among the Black, Asian, or Native American participants.

Types of chosen family members included in-laws, stepfamily members, or half siblings. Several participants embraced their stepchildren and grandchildren as their own. Some participants regarded a half sibling as a full sibling because they were raised together, in contrast to half siblings with whom they were not raised. Other prominent types of chosen family members were extended family such as third cousins and godchildren. Some participants regarded former significant others with whom they are coparenting children as their primary source of family support. It was evident in each of these scenarios that embracing a person as family or not was a choice.

Family virtues imparted by parents and grandparents had a lasting effect on participants, continuing to influence their present experiences. Participants described the value of religion (most commonly Christianity), and how the importance of attending church as a way of life had been passed on to them. Faith was passed on as a legacy through a tradition followed by generations of family members. Participants whose parents were deceased utilized lessons from their parents' mortality. A participant who had a hereditary illness utilized her mother's mortality as an opportunity to recognize the importance of self-care so she may avoid a premature death and continue to provide care for her son. Another participant drew from the experience of her parents being deceased and her professional training as a counselor to keep her family together. Regarding the social aspects of care, awareness of a patient's social-support systems, relationships, and social resources is important in order to optimize the patient's coping abilities and to ultimately support QOL.[2]

As a culmination of lessons from their parents and grandparents, participants discussed their future thoughts about family and their desire to influence the next generation. One participant stated, "I want to be able to teach my son right from wrong and be a positive example for him. My grandparents taught me those things" (P17). A participant melded the concepts of identity, pride, and influence on the next generation with the quote, "I am so glad my daughter has become a strong independent woman. I heard from my daughter how she wants to be like me, a strong Hispanic woman who takes care of herself" (P7).