Roma Women’s Perspectives on End-of-Life Decisions

Patricia Peinado-Gorlat, Francisco Javier Castro-Martínez, Beatriz Arriba-Marcos, Miguel Melguizo-Jiménez, Inés Barrio-Cantalejo

Spain's Roma community has its own cultural and moral values. These values influence the way in which end-of-life decision-making is confronted. The objective of this study was to explore the perspective of Roma women on end-of-life decision-making. It was a qualitative study involving thirty-three Roma women belonging to groups for training and social development in two municipalities. We brought together five focus groups between February and December 2012. Six mediators each recruited five to six participants. We considered age and care role to be the variables that can have the most influence on opinion regarding end-of-life decision-making. We considered the discussion saturated when the ideas expressed were repeated. Data analysis was carried out according to five steps: describing, organizing, connecting, corroborating/legitimating, and representing the account. The main ideas gleaned from the data were as follows: (1) the important role of the family in end-of-life care, especially the role of women; (2) the large influence of community opinion over personal or family decisions, typical of closed societies; (3) the different preferences women had for themselves compared to that for others regarding desired end-of-life care; (4) unawareness or rejection of advance directives. Roma women wish for their healthcare preferences to be taken into account, but "not in writing." The study concluded that the success of end-of-life healthcare in Roma families and of their involvement in the making of healthcare decisions depends upon considering and respecting their idiosyncrasy.