**1. Introduction**

In 2009, approximately 2.98 million people in Nigeria were living with HIV/AIDS. More than 192,000 deaths were caused by AIDS and 2.175 million AIDS orphans are now living in Nigeria (UNAIDS, 2010). The availability of anti-retroviral therapy (ART) implies that people living with HIV/AIDS (PLWHA) should be able to carry out daily activities like the rest of society. However, there are a number of hindrances to the utilization of care, leading to suboptimal effectiveness of available treatment (Hilhorst et al., 2006; Morolake et al., 2009). One of the factors seems to be stigma; PLWHA and their care givers have to cope with negative reactions from the people directly around them as well as from the community (Mwinituo & Mill, 2006; Mitchell et al., 2007; Sabin et al., 2008; Adewuya et al., 2009; Hejoaka, 2009; Demmer, 2011). A study carried out among home based care givers in KwaZulu Natal South Africa showed that home based care givers experience high levels of burden and are targets of HIV-related prejudice and discrimination (Singh et al., 2011).

Not only does the discovery that one is infected with HIV lead to fear of progression into AIDS and fear of dying, it also creates an anticipation of negative social reactions among PLWHA. Sontag (1989) argues that it is not the suffering of the disease that is deeply feared, but the denigration that is suffered from having the disease that makes PLWHA vulnerable as individuals and within society. People in the community have a negative attitude towards PLWHA because they attribute the characteristic of promiscuity to those who are infected (Campbell et al., 2007). Societal norms and values in Nigeria are restrictive and secretive, while discussion about sex is often private for cultural and religious reasons (Ajuwon et al., 1998), making people who transgress these norms likely to be condemned because norms are very strong and strict.

Several studies around the world (Amirkhanian et al., 2003; Singh et al., 2009; Stevelink et al., 2011; Vlassoff & Ali, 2011) and in Africa indicate that PLWHA are still discriminated against (Muyinda et al., 1997; Duffy, 2005; Shisana et al., 2005; Muula & Mfutso-Bengo, 2005; Hilhorst et al., 2006; Liamputtong et al., 2009; Morolake et al., 2009; Amuri et al., 2011), making them resort to varied ways of coping with their problems (Mbonu et al., 2009). Despite these studies indicating the presence of stigma, literature have equally acknowledged that one of the positive noticeable interventions in the fight of HIV/AIDS

The Experiences and Complexities of

in Figure 1).

Care-Seeking Behavior of People Living with HIV/AIDS: A Qualitative Study in Nigeria 5

efficacy. Reinforcing and enabling factors are represented as moderating variables, such as poverty, gender, age, religion and policy and how stigma may impact on the variables that determine individuals' care-seeking behaviour. The model finally specifies different coping strategies (coping with self, coping directed at others and comparison with others, coping with solving the problems of HIV/AIDS) that can lead to various care-seeking choices, such as inappropriate self-care, inconsistent use of biochemical care or use of traditional healers and faith houses, which may result in non-utilisation of healthcare institutions. In our explanatory model, non-utilisation of healthcare institutions is the outcome variable (see [n]

In this study, while the interview was left open for interviewees to express a variety of issues, thoughts and feelings with respect to stigma and other concepts, we use the explanatory model as a general framework for identifying relevant categories of variables.

Fig. 1. Explanatory model of role of stigma in care-seeking behaviour.

We conducted in-depth semi-structured interviews with a purposive sample of 20 adults (12 females and 8 males) living with HIV/AIDS who were receiving care from a resource centre in Port Harcourt, Nigeria. Participants are members of network association of PLWHA and therefore were willing to be interviewed about their circumstances. All persons approached agreed to participate. Participants identified themselves as Christians and their ages ranged from 24 years to 48 years. In addition, ten of these participants (6 females and 4 males) participated in a focus group discussion which was conducted in the resource centre. The focus group discussion allowed the participants to exchange ideas and react to issues brought up by fellow participants. The resource centre was established to care for PLWHA and people with other sexually transmitted diseases. In addition, it provides pre and post HIV test counseling and nutritional advice for the PLWHA. Informed consent was obtained

Mbonu, Van den Borne, & De Vries, 2009

**3. Methodology** 

and stigma is giving HIV/AIDS a human face (Fokolade et al., 2009; Morolake et al., 2009) but this implies that PLWHA who are active in public HIV/AIDS programmes may have to cope with additional problems. A UNAIDS summary of literature on HIV-related stigma and discrimination recognizes the strengthening of networks of PLWHA that take lead in addressing stigma and calls for more studies to evaluate stigma and discrimination programs (UNAIDS, 2009; UNAIDS, 2010). There is an urgent need for evidence-based research to meet the needs of those affected by HIV/AIDS (Doyal, 2009). Moreover, experiences of PLWHA who are members of an existing network will help in future HIV/AIDS policies that can be used in society and by health care institutions (Nyblade et al., 2009).

In this chapter, we aim to report results from a qualitative study that explores the stigmatization experiences, coping mechanisms and care-seeking choices of PLWHA who belong to an association network in Port Harcourt, Nigeria. We also explore the possible role of contextual factors related to these stigmatization experiences and the PLWHA's health care-seeking behavior as a consequence.
