Abstract

Background A growing emphasis on patient involvement in health care decisions has brought ‘patient participation’ and ‘informed choice’ to the core of the debates. Health care decisions, based on interpersonal relationships between the health worker and the patient, may be viewed along a continuum from paternalistic approaches to approaches emphasising counselling, patient involvement and patient choice. A key question is how the new models are implemented and experienced in diverging cultural contexts. Infant feeding by HIV positive women in low income contexts is challenging in terms of health care decisions, and rapidly changing guidelines complicate the picture. The present study explored experiences with different approaches to health care decisions within infant feeding counselling in ‘prevention of mother-to-child transmission of HIV’ (PMTCT) programmes. Methods 9 months of ethnographic fieldwork were conducted in two hospitals in rural and semi-urban areas of Tanzania. Core informants were nurses and HIV positive women. Results Hospital A presented no informed patient choice in infant feeding counselling - emphasising exclusive breastfeeding. The programme adapted their approach to what seemed realistic in terms of conditions of little or no actual choices. HIV positive women in hospital A communicated a clear understanding of the ‘instructions’ given. Hospital B expressed that they followed the national guidelines emphasising patient choice. The women enrolled in this programme experienced confusing messages. Findings show that in none of the hospitals counselling and choice principles were implemented as presented in the literature, as they were not found feasible. Conclusion In health care systems which have been dominated by paternalistic interactions, partly due to the knowledge gap between the health workers and patients, the introduction of concepts such as counselling and patient choice are challenged both by culturally constituted notions of decision making and by patient groups with limited knowledge and with no actual feeding choices.

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