RESUMEN
In order to explore the cultural constructs of pain, a series of focus groups were held among adult American Indian (AI) cancer survivors and their caregivers in the Southwest USA. Thirteen focus groups held at four sites (reservation, urban setting, hospital and clinic) elicited information on the barriers to cancer pain management. In response to facilitator questions about cancer pain and existing measurement scales, participants drew pictures to better explain their pain type (i.e., "pounding"), intensity (i.e., "spider web-like"), and other more abstract aspects of their pain episodes. Noting this novel outlet, subsequent groups were prompted for illustrations of pain. A total of 17 drawings were collected from focus group participants. We discuss seven of the drawings that best opened a window into the lived experience of pain, reflected through the eyes of cancer survivors. This study provides evidence that self-expression through color, imagery and written personal accounts provides more accurate depictions of pain for Southwest AI cancer survivors than pain scales alone. It is hypothesized that cultural modes of communication (i.e., storytelling) and intergenerational influences of artwork led to the depiction of pain in drawings. Suggestions for further exploration of the use of the pain drawings for pain assessment in healthcare settings are included.
RESUMEN
There is limited literature related to culturally embedded meanings of cancer and related symptoms among American Indians. A culturally appropriate intervention to improve management of cancer-related symptoms, including pain, depression, fatigue and loss of function, was tested. Two-hundred and twenty-two adult American Indians with cancer were recruited from eight Southwest sites for a randomized clinical trial. The intervention group received tailored education, a toolkit with a video, and participated in discussion sessions on cancer symptom management; the control group received information on dental care. Pre- and post-test questionnaires were administered to control and intervention groups. Measures included socio-demographics, cancer-related symptom management knowledge and behavior, and quality of life measures. Male cancer survivors reported poorer self-assessed health status and lower scores on quality-of-life indicators as compared to female cancer survivors. Significant improvement was reported in symptom management knowledge scores following the intervention: management of pain (p = 0.003), depression (p = 0.004), fatigue (p = 0.0001), and loss of function (p = 0.0001). This study is one of the first to demonstrate a change in physical symptom self-management skills, suggesting culturally appropriate education and interventions can successfully enhance cancer-related symptom management knowledge and practice.
