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

Abstract

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.

Foot health among the Roma population of southern Spain according to the foot health status questionnaire

“…The Roma population is the oldest and largest ethnic minority in Spain [1] with their own cultural and moral values [2], and in Europe it represents one of the oldest ethnic groups (1.35% of Europe's total population) [3]. Currently, in Europe the Roma population is estimated to be of seven to 9 million people and, in Spain, it represents 1.5-2.1% of the total Spanish population (725,000-750,000 Roma people) [4] [5].…”

“…Condon et al reported that the Roma population has serious health inequalities when compared to other minority ethnic groups [6], and that they have poor health indicators with respect to the non-Roma population [7]. Health inequalities are due to the fact, that it is an ethnic group with its own culture and values [2], and not only that, minority groups have a socio-economic gap [8]. However, some authors point out that the absence of evidence on the health of the Roma population should not be equated with evidence on the absence of health inequalities [9].…”

Exploring the Barriers: A Qualitative Study about the Experiences of Mid-SES Roma Navigating the Spanish Healthcare System

“…In general, the study’s findings are aligned with the existing evidence of discrimination against Romani women in healthcare systems in Europe, specifically in maternity care [ 20 ]. Nonetheless, all these investigations emphasize the central importance of social support from the family to address healthcare accessibility problems [ 24 , 25 , 26 ], accentuating the active role that women play in leading the improvement of their family and community’s living conditions [ 27 ], which is also identified in other social groups when facing difficult situations [ 28 , 29 , 30 ].…”

“…All in all, the lack of cultural sensitivity in healthcare systems is often fed by the intolerance, prejudices, and stereotypes of some healthcare personnel towards all non-white clients, accentuated in the case of the Roma people as a result of long-lasting discrimination [ 14 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 ]. Although some efforts have been dedicated to exploring the barriers that the Roma community face in accessing the healthcare system in Spain [ 32 ], more research specifically addressing how these barriers are embodied, and looking at the cases not only of those who are in the most vulnerable social positions, but also of those who have stable socioeconomic positions and higher cultural capitals, can help us to better understand how anti-Roma sentiments underlie society, and specifically, the health-care system.…”

Is the Definition of Roma an Important Matter? The Parallel Application of Self and External Classification of Ethnicity in a Population-Based Health Interview Survey

“…According to recent publications, non-self-reported ethnicity can be based on lifestyle [ 34 ], surname [ 35 ], and residence [ 36 , 37 , 38 , 39 , 40 ], but not on explicitly defined racial characteristics [ 41 , 42 , 43 , 44 , 45 , 46 , 47 ]. Health care staff members [ 48 ], officers [ 34 ], survey interviewers (with or without the support of a Roma community leader [ 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 ]), and parents of children [ 59 , 60 ] can perform this classification. Furthermore, the combination of self-reporting and a decisive external classification is also in practice [ 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 ].…”