Cultural Resources for Health Participation: Examining Biomedicine, Acupuncture, and Massage Therapy for HIV-Related Peripheral Neuropathy

Abstract

In this article we use a culture-centered approach to understand people's experiences of treatment options for human immunodeficiency virus (HIV)-related peripheral neuropathy. We present from often unheard and marginalized voices the stories of how people live with this chronic illness and negotiate treatment options. Based on individual and group interviews, participants reported that biomedical pills were an important context for understanding decision making regarding neuropathy treatment. While most people spoke of the necessity of these drugs for their survival, they also expressed deep resentment and frustration with biomedically prescribed pills. Complaints about the pills worked to frame the holistic alternatives of acupuncture and massage therapy as better options for neuropathy and to establish a foundation for understanding how participants made particular health treatment decisions. Through strategically refusing certain drugs and choosing holistic treatments instead, participants asserted agency and control over their health decision making. By choosing holistic therapies, these clients were able to make choices about their neuropathy treatment in light of the many issues surrounding drug toxicity and treatment efficacy.

Acknowledgments

The University of San Francisco's Jesuit Foundation Grant provided funding for this research. An earlier version was presented at the Western States Communication Association Annual Conference, Mesa, AZ, February 2009. We thank the staff of the HTC and research assistants Jessica Anderson, Jillian Fish, Katherine Lloyd, and Katarina Peña, who helped with this project. Thanks also to Vesta Silva, Kate Cady, and two anonymous reviewers for their helpful suggestions on earlier drafts.

Notes

¹In this article, we use the term holistic instead of the more popular complementary and alternative medicine (or CAM). Holistic uses a positive definition (therapies that are holistic in nature), as opposed to CAM, which names therapies based on what they are not (complementary to or alternative to biomedicine). See Geist-Martin, Sharf, and Jeha (2008) and Schreiber (2005) for discussions about the use of these terms. However, when reviewing literature about “CAM,” we use the authors' terms.

²In this article, we use the term biomedicine to refer to scientifically accepted medicine that is typically found in major hospitals and doctors' offices (such as antiretroviral treatment) because this is generally the standard academic term used to name this body of health therapies. However, since many of the participants in this study used the term “Western” medicine to reference the same body of health care, when referencing their words and experiences, we use their terms.

³The name of this clinic and all participant names have been changed to protect their privacy.

⁴The Pawluch et al. (2000) term.

⁵Research in holistic medicine cites that women tend to use these therapies more than men (see Barnes et al., 2004). We recognize that this is not typically a powerful demographic category; however, many of the other categories including high education and income typically are.

⁶At these initial meetings, the research procedures approved by the University of San Francisco Institutional Review Board for the Protection of Human Subjects were explained and participants gave informed consent.