Teoría de las políticas públicas

The last decade witnessed increasing recognition of the importance of stigma and its negative psycho-social impacts such as isolation and self-blaming among patients with cancer in general (Chatman and Green, 2011, den Heijer et al., 2011, Else-Quest et al., 2009), but in this study it seems that it takes a stronger form and plays a powerful role in informing women‘s decisions about Sanad that later shapes the recovery process at least at the individual level. In this research, stigma was seen by women as a cluster of feelings, experiences, perceptions and actions that includes fears of telling others about the diagnosis, hiding changes in appearance following medical treatment and avoiding being seen in public.

Stigma and social support groups have extensively been studied with patients with HIV (Phillips et al., 2000, Yoshioka and Schustack, 2001), prostate cancer (Else-Quest et al., 2009) and evidence showed that stigma prevents them from seeking medical help and contributes to social isolation (Brahams, 2011, Vos et al., 2012). These findings apply to

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the emerging evidence from this thesis, in particular the role of stigma in social integration.

However, previous research on stigma and self-help groups has focused on men with prostate cancer, mental patients, cardiac rehabilitation programmes (Davison et al., 2000, Else-Quest et al., 2009, Walker, 2005, Bloom et al., 2001) and patients from different cultural and religious contexts from those in this study. What is clear from this study is that the fear of social discrimination among Jordanian women with breast cancer limits the possibility of participation in any social group such as Sanad. It should be noted that stigma is a complex social issue that can delay diagnosis, and thus receiving the medical treatment needed (Sussner et al., 2011, Ablon, 2002, Skinner and Mfecane, 2004).

Slef-help groups require a readiness to disclose personal experience, feelings and concerns and it seems that there are socio-cultural barriers to doing this (Ashing Giwa et al., 2004, Fang et al., 2013, Guruge et al., 2011). Referring to taking part in Sanad as ―putting the family as a headline in the newspapers‖ is indicative of the fear of social stigma contributed to women‘s decisions. A British study illuminates this point, confirming that having a condition that people perceive as stigmatising means that people feel fearful of the judgments of others (Munn Giddings and McVicar, 2007), and this in turn informs the decision process of not taking part in self-help groups (Avis et al., 2008). It is not surprising therefore that only a small percentage of cancer patients in general join support groups (Lieberman and Goldstein, 2006, Oka, 2013), as mirrored by this research.

However, the thesis offers some conflicting findings about the impact of stigma on women‘s decisions to join Sanad. Whilst stigma played a vital role in inhibiting women from taking part in Sanad, it also encouraged others to seek support and become members of the self-help group. The emergence of this interesting and unexpected positive impact of the perception of stigma might be explained by a number of factors.

First, the findings reveal that women with breast cancer can experience some difficulties affecting their sense of femininity, sexual functioning and fertility. These challenges were cited and confirmed elsewhere in the literature (Kunkel and Chen, 2003, Broeckel et al.,

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2002, Chatman and Green, 2011). Sensitive issues such as sexual functioning and fertility may better be understood by those who suffer from breast cancer (Boesen et al., 2011, Cho et al., 2006, Avis et al., 2008, Lam et al., 2012a); in other words, for some participants the power of the sensitivity of certain topics that need to be shared with those ―in the same boat‖ in Sanad was a main driver for taking part in the group because of the presence of social stigma among outsiders.

This reflects that social stigma can act to isolate people and cut them off from support, but when patients identify the illness as disfiguring, embarrassing, and stigmatizing, this leads to seeking the support of others, who share common experiences without the fear of being stigmatised and looked at as abnormal (Davison et al., 2000, Fang et al., 2013, Graves et al., 2012). When women share their concerns about social stigma and body image and how to deal with them, this leads to better mental health outcomes and symptom reduction (Coreil et al., 2012a, Goodwin, 2005, Sammarco, 2003). For instance, practitioners are urged to recognize that the stigma suffered by patients with breast cancer could influence decisions to join Sanad, and such issues should be explored and discussed carefully with them without projecting assumptions and pre-conceptions onto patient feelings and preferences.

The current discussion offers health professionals a better understanding of women‘s need for support, and of their concerns during diagnosis and treatment, highlighting the need for sound counselling services. This study concurs with other research arguing that the belief that information and knowledge are adequate to modify stigma attached to illness is erroneous (Skinner and Mfecane, 2004, Arora et al., 2007). It would appear therefore that social stigma and ―labelling‖ and its impact on taking part in Sanad is a complex issue that desires to be understood from both individual and family perspectives. It can be suggested that the perception of not being accepted by society or even families due to the social stigma encouraged some women to take part in Sanad, in which relationships constitute a ‗separate space‘ for those women suffering from breast cancer (Ussher et al., 2006). Women‘s efforts were directed towards such a separate space where they left behind all sorts of fears of being lonely, being treated as infectious and feeling themselves (or being perceived to be) an added burden on the family. In short, the

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findings show that the feeling of being stigmatized by family and society induced women to take part in Sanad in order to get a sense of feeling normality.

Perhaps the most interesting issue to emerge in the context of motives behind deciding whether to take part in Sanad is the perception that not being married will be regarded by others as a flaw or reason to be ashamed. Some single women felt that Sanad would expose their private lives and thus lead to feeling embarrassed in front of married women, and that being a member might reduce their chances of getting married. To some extent the available evidence is inconsistent with the current findings. For example, a quantitative American study with a sample of 549 women with breast cancer aged 22-50 found that women with breast cancer believe that being married is associated with more body image concerns, fears and social acceptability than those who are singles (Fobair et al., 2005). Whilst it is recognized that the sample size in this research is small, the occurrence of the fear of negative marital affects arising from participation in a breast cancer self-help group found in this particular study is attributable to numerous reasons. First, many participants with breast cancer in the previous studies included exclusively married women with children (Cebeci et al., 2011, Chamberlain Wilmoth et al., 2006, Baider et al., 2004), and consequently the experience of single women in decisions regarding social groups have not been well understood. Second, although the utilization of a quantitative method would most likely enhance the generalisability of this finding, this approach might restrict the emergence of complex and in-depth subjective experiences of women with breast cancer. Third, it seems that single and younger women in this study are aware of their stigmatised status but this is triggered further in Sanad when married women explore marriage- and children-related issues.

In line with this, I agree with other researchers who found that commonality in terms of illness alone is not enough for joining a self-help group and each individual‘s experience is diverse and complex (Avis et al., 2008). Accordingly, it might be beneficial in the future to create a sub-group of Sanad that is homogeneous in terms of some demographics such as marital status and age groups that better promote interactions among the members, minimize stigmatization and contribute to a more relaxing atmosphere and thus experience open and comfortable exchanges.

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However, it is clear that more empirical work is needed in future to draw attention to the experiences of single and younger women with breast cancer and its impact on their lives. To date, many research studies used qualitative methodologies to explore women‘s experiences of breast cancer, stigma and self-help groups; whilst such methodologies are valuable, there is a need to examine women‘s demographics and decisions about joining Sanad through quantitative means and thus sharpen the generalisability of issues identified in the qualitative data.