Although comprehensive palliative care for patients with serious illness improves quality of life, quality of care and patient satisfaction, the growin population of African American (AA) elders with serious illness experience disparities in the receipt of palliative care, dissatisfaction with that care, and care inconsistent with their wishes leading to decreased quality of life and increased suffering. In addition, little is known about th AA elders'cultural values and beliefs about the psycho-social-spiritual dimensions of palliative and end-of-life care. Disparities in palliative and end-of-life care are due to lack of integrationof culturally sensitive psychological, social and spiritual healing for AA elders with serious illness Patient-centered palliative care focuses on psychological, sociological and spiritual dimensions of healing, as well as the physiological, to decrease suffering and improve quality of life. Healin is conceptualized as generating a """"""""life transforming positive subjective change"""""""" or what has been described as psychological-social-spiritual healing occurring when one experiences a serious illness. The Principal Investigator has a unique opportunity to collaborate with colleagues at the NIH Clinical Center Pain and Palliative Care Service, who are studying this phenomenon and methods to measure it. The proposed study will investigate psych-social-spiritual healing for seriously ill AA elders to decrease critical gaps in knowledge about culturaly sensitive palliative patient-centered interventions for AA elders with serious illness. It will tak place in Mississippi, which is greatly underserved for palliative care. The long-term goals are to develop and test culturally sensitive interventions that support psych-social- spiritual healing through provision of patient-centered palliative care across a more diverse patient population, contributing to decreased suffering and improved quality of life for the AA elder with serious illness. There are 2 specific aims.
Aim 1) Describe categories and patterns of psych-social-spiritual healing from the perspective of AA elders with serious illness. Using the qualitative method of narrative analysis, we will describe psychological, social and spiritual experiences of healing for AA elders with serious illnesses of cancer, stroke, heart failure and/or diabetes.
Aim 2) Examine the NIH Clinical Center's psych-social-spiritual healing measure as a valid, culturally appropriate measure for AA elders with serious illnesses. Using a verbal probing, cognitive interviewing methodology for content validity, we will summarize participants'interpretations on each item of the measure. Together, these findings will serve to characterize psych-social-spiritual healing for AA elders. To avoid subject burden, we will enroll separate samples of 10-15 AA elders with serious illness for each aim. Data will be collected through audio-recorded interviews. The outcomes of this study and the training plan will prepare the Principal Investigator to launch a program of research focused on testing culturally sensitive palliative care interventions to improve the quality of life of AA elders with serious illness.
The proposed research is relevant to public health because disparities in palliative care for AA elders with serious illness exist due to lack of integration f culturally sensitive psychological, social and spiritual care practices. The expected outcomes of the proposed study will be descriptions of categories and patterns of experiences of psycho-social-spiritual healing from the AA elders'stories about their serious illness and will summaries of individual item analyses, informing decisions about the cultural applicability and content validity of the current National Institutes of Health psych-social-spiritual healing measure. Together, these findings will serve to characterize PSS healing for AA elders. Collectively, these outcomes will provide directions for the next steps in the PI's program of research, namely development and testing of culturally sensitive, patient- centered palliative care interventions to promote psych-social-spiritual healing for AA elders with serious illness.
|Coats, Heather; Crist, Janice D; Berger, Ann et al. (2017) African American Elders' Serious Illness Experiences: Narratives of ""God Did,"" ""God Will,"" and ""Life Is Better"". Qual Health Res 27:634-648|