29 then this may lead to a positive self-image. On the other hand, if one thinks that others think negatively about him/her, this may lead to low self-esteem. People's reactions to the self can either be positive or negative depending on their evaluation of the body. Accordingly, it is important that an individual’s body is in its normal or near normal state as much as possible.
This sense and experience of normality is however undermined by chronic illness (Bury, 1982; Carel, 2008; Charmaz, 1983; Freund and McGuire, 1999; Nettleton, 2006).
The conceptions of self can also be affected when the illness is unmanageable and undermines the person's ability to live a normal life. Literature indicates that when the person is so subdued and is unable to organize his life or perform daily tasks, they may be flooded with thoughts of suicide. When a person cannot effectively fulfill their social obligations (such as those of mother, father, spouse, worker, community member, Church member), then the person's self-image is likely to crumble and they are likely to suffer an identity crisis. The crumbling of a person's identity may result from episodes of illness or overwhelming sense of grief or loss associated with a HIV-positive diagnosis consequently rendering one physically, mentally and socially incapacitated (Carel, 2008; Charmaz, 1999; Freund and McGuire, 1999).
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1.7.1 Taking care of Oneself
According to literature (Barroso and Powell-Cope, 2000; Dageid and Duckert, 2008;
Musheke et al., 2013; Russell and Seeley, 2010), taking care of oneself incorporates themes such as engaging in positive behaviour change, by adopting new beneficial habits, and abandoning risky behaviours that can jeopardize tolerable standard of living. Taking care of oneself should be seen to encompass the activities generally referred to us “illness work” and
“everyday life work” (Bury, 1982). Among the things mentioned by women in a study by Liamputtong et al. (2012) as comprising taking care oneself included adapting good nutritional practices such as eating balanced diets, engaging physical exercises, ensuring they had enough rest and not getting too mentally engrossed with their physical health and well-being. The women took care of themselves so that they could add more years to their lives.
This coping strategy also involved doing everything within one's ability to stay healthy and if possible find a cure for the condition. In other studies, taking care of oneself also meant remaining optimistic and always having a positive outlook towards life in spite of the fact that one faced difficult circumstances. It meant not giving up to a defeatist mentality (Barroso and Powell-Cope, 2000; Liamputtong et al., 2012).
1.7.2 Disclosure of HIV Status
Participants in a study by Medley et al. (2009) reported that an increasingly favourable social atmosphere had developed in the country over the years and since people were more understanding and more informed, it was easier to make one's status known to others as well as live positively with HIV. According to literature, disclosure was adopted as a coping mechanism for various reasons and decisions were also made concerning the extent of disclosure, whether to a close circle of family and friends or a more public disclosure. Among the reasons for disclosure to family and friends was the need to be understood and to be supported. Others disclosed in order to make public their status or to circumvent speculation and to be the ones to make the information about their status public instead of it being spread by others in form of rumours (Anderson, 1988; Anderson et al., 2009; Baumgartner and David, 2009; Dageid and Duckert, 2008; Makoae et al., 2008). Some disclosed because they felt moved to be a source of information for others and to help demystify the disease (Baumgartner and David, 2009).
In a study by Anderson et al. (2009), most of the respondents had disclosed their status to at least one person. These were mostly close family members and friends. Others opted for a closer relationship with the health care provider who knew their status as opposed to family members. Most participants in the study by Anderson et al. (2009) had decided against a
31 more widespread disclosure instead restricting it to a few members of their social networks.
In findings echoing those of other studies, reasons that influenced restricted disclosure included lack of assurance as to whether those to whom they disclosed would keep the information confidential (Liamputtong et al., 2012; Makoae et al., 2008; Baumgartner, 2007).
Others had self-stigmatizing attitudes and did not want to associate with support groups of PLHIV. The need to keep one's status under wraps appeared to have deleterious effects for it often led to increased isolation as the PLHIV wanted to avoid contact with their friends and acquaintances. This is because of the fear that these significant others would notice changes in their physical appearance. In other words, it was difficult to face others in such a situation (Anderson et al., 2009; Charmaz, 1983; Corbin, 2003; Williams, 1984).
Disclosure was also shown to have positive outcomes for most of the respondents in a number of studies. In a study by Liamputtong et al. (2012) women reported that they were able to deal better with their lives and other associated challenges since their family members knew of their HIV status. The fact that their family members received the news positively acted as a big source of relief and encouragement to the women. Family members appeared concerned and provided support and solace to the ill members so as to help them cope (Liamputtong et al., 2012). In two studies among PLHIV in the United States, Baumgartner (2007) and Baumgartner and David (2009) noted that disclosure started with a close circle of significant others, then to a more open or public disclosure and finally to disclosure as the situation demanded. Public disclosure, even though in some cases involving more extensive and far reaching—as those done through electronic media such as television programmes, newspaper adverts and disclosure in social forums such as and AIDs conference and workshop—was mostly restricted to support groups or disclosure within the HIV community (Baumgartner, 2007; Baumgartner and David, 2009).
1.7.3 Faith and Religious Activities
Faith in God or a supreme being was a source of strength and solace for PLHIV. In some studies, it was noted that for faith led some participants to view life from a new and positive perspective. God was viewed as an ever present companion and friend who one could tell his/her problems and that he, God, was powerful enough to keep the PLHIV from harm and danger and help them realize positive outcomes (Anderson et al., 2009; Makoae et al., 2008;
Russell and Seeley, 2010; Ribeiro Nobre et al., 2012). Faith also enabled some participants to understand their HIV status as part of God's will or one's own destiny. For instance, in a study within a predominantly Buddhist context, karma was a strong theme in how faith played a prominent role in helping PLHIV not only to comprehend but adapt to a life with HIV
32 (Liamputtong et al., 2012). Belief in karma assisted the women to accept their HIV status.
Moreover, it helped them to change their actions making them resort to meritorious acts so as to accumulate benefits for either the present or next life. Consequently the women gave alms to the poor and provided support to Buddhist monks (Liamputtong et al., 2012).
In a study by Anderson et al. (2009) the aspect of faith that was most beneficial to participants was a personal relationship with God as opposed to comfort and support from the Church, where sometimes preachers condemned a life of HIV and some members responded with glee. Relationship with God helped PLHIV to deal with isolation since they saw God as a companion and comforter. According to Russell and Seeley (2010), faith gave PLHIV a sense of hope that they could overcome the difficulties they faced if they became proactive and took steps to improve their situation. Moreover, some participants believed that God was a healer who could provide healing from HIV even if that was not fulfilled immediately. This kind of attitudinal disposition was a great source of hope and motivation for PLHIV to carry on with life (Anderson et al., 2009; Russell and Seeley, 2010).
1.7.4 Support Groups
Since members of support groups are all people in similar circumstances or life situations, they help meet the emotional, social and psychological needs of their members. Research consistently shows that being part of a network or support group of PLHIV is one of the key ways or strategies used by people living with HIV to cope (Anderson et al., 2009; Campbell et al., 2011; Liamputtong et al., 2012; Makoae et al., 2008; Russell and Seeley, 2010). In the aforementioned studies, support groups give members a sense of identity, belonging and acceptance and help with overcoming negative outlooks such as being angry and sad. The group experience can give a sense of solidarity that one is not facing the condition alone but that there was a community of people with the same condition. Support groups also provide or restore a person's sense of self-worth through making one feel that whatever one shares is valued and will not be rejected. Therefore as has been documented in these studies, support group provides a good resource for overcoming stigmatization associated with a positive HIV status (Baumgartner and David, 2009; Dageid and Duckert, 2008; Liamputtong et al., 2012;
Nettleton, 2006; Russell and Seeley, 2010). In this sense, PLHIV can use support groups as effectives tool for positive resistance, advocacy and lobbying for services and sensitizing the wider community on the special circumstances they face. Being in a support group is a source of social power with which the narratives of the dominant prevailing and discriminatory social and cultural attitudes can be counteracted. Additionally, support groups provide a forum where members cannot only learn more about their condition but also how to confront
33 the challenges associated with being HIV positive as well as challenges associated with life generally (Anderson et al., 2009; Dageid and Duckert, 2008; Liamputtong et al., 2012).