Why self-care fails: Implementing policy at a low-income sickle cell clinic

Abstract

a This paper addresses health care service delivery--its practice and its meanings--to a low income African-American population. Drawing on fieldwork and interviews at a sickle cell clinic, I explain why assumptions inCeleste, an African-American nurse-practitioner, is teaching Jamika, a sixteen year old with sickle cell anemia, how to self-administer a medication called Desferal. The procedure is quite complicated. Jamika has to insert a needle under the skin of her stomach, making sure it achieves the right angle and depth. Attached to the needle is a small cartridge of medicine which slowly, over the course of eight hours, will filter into her system and remove the iron that builds up in her blood as a result of her treatment for sickle cell anemia. She will use her Desferal equipment every other night at home while she sleeps. Celeste has a big notebook filled with pictures, diagrams, and charts to help her explain Desferal therapy to Jamika. They flip through the notebook together. "These symptoms mean too much Desferal, and these symptoms mean too much iron," Celeste explains, pointing to a chart. They speak for forty-five minutes, discussing Jamika's iron levels and other medications in very technical terms. They also discuss the different ways Jamika can integrate this therapy into her life with a minimum of discomfort, inconvenience Direct correspondence to

Troubling ruling discourses of health: Using institutional ethnography in community-based research

“…Nor did we use the concept to refer to particular health strategies or practices in a normative way, such that some PHAs could be found to be not 'properly' looking after their health. As an orienting concept, health work thus functions very differently from terms such as 'self-care', which in biomedical and health promotion discourses carries normative force (Kickbusch, 1989;Dean & Kickbusch, 1995;Ragins, 1995), or 'care of the self ' which in Foucauldian studies of health identifies a particular kind of self-surveillance in conformity with the biomedical gaze (Lupton, 1995;Petersen & Bunton, 1997). Health work, as we used it, located our research within a genuine investigative mode of inquiry.…”

Critical analysis of everyday self‐care decision making in chronic illness

“…The assumptions guiding much research regarding everyday self‐care decision making in chronic illness are similar to those that underlie research conducted for other purposes, such as decision making by practitioners (Lachman 1996). Consequently, the traditional conceptualization of everyday self‐care decision making has contributed to the contradictory and misleading formulations of everyday self‐care decision making that have shaped the practitioners’ understanding of everyday self‐care to date (Ragins 1995).…”