**3. Methodology**

4 Social and Psychological Aspects of HIV/AIDS and Their Ramifications

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

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

Following prior research on stigma in relation to HIV/AIDS (Mbonu, Van Den Borne & De Vries, 2009), using an inductive approach from an extensive literature review in Sub-Saharan Africa, we adapted the Precede portion of the Precede-Proceed model (Green & Kreuter, 1999) as an explanatory model. The PRECEDE-PROCEED model provides a systematic approach for assessing quality-of-life of health and for designing, implementing, and evaluating health education and health promotion programs. PRECEDE includes five phases. In phase 1, quality of life or social problems and needs of a population are identified. Phase 2 includes an epidemiological analysis in which the relevant health problems are identified. Phase 3 involves an analysis of the behavioral and environmental determinants of a key health problem. In the fourth phase, the factors that predispose (beliefs, knowledge, self-efficacy, social norms, etc.), reinforce (e.g. social support), and enable (facilities etc.) the health behavior, are identified. In phase 5, the focus is on the development of a health education or health promotion intervention that would encourage desired behavior change, changes in the environment, and changes in the determinants of behavior and environmental factors. PROCEED includes an implementation phase, an intervention process evaluation, impact evaluation of changes in behavior or environment, and an outcome evaluation in which the impact on health and quality of life is assessed (Green & Kreuter, 1999). Since models are constantly modified to fit the situation (Chiang et al., 2003), we specified the model to the health care-seeking behaviour among PLWHA and used it to analyse people's coping strategies in dealing with stigma-related problems (Mbonu et al., 2009). The model proposes that a complex health problem, such as careseeking behaviour of PLWHA, is a function of various factors; and these factors have to be

considered from a wider perspective of the social structural context.

The first component of the explanatory model is the analysis of the problem – that is, careseeking behaviour of PLWHA and how stigma influences it (see [a] in Figure 1) and how it may have an impact on the socio-structural context within which PLWHA, society and healthcare professionals are embedded. The second component of the model involves identifying the predisposing, reinforcing and enabling factors. The predisposing factors are represented as variables such as beliefs, knowledge about HIV transmission and self-

al., 2009).

care-seeking behavior as a consequence.

**2. Theoretical framework** 

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

The Experiences and Complexities of

Care-Seeking Behavior of People Living with HIV/AIDS: A Qualitative Study in Nigeria 7

**Nr. Gender Status Work Reason for HIV test Age ART status** 

sickness

delivery

screening

test

test

test

for test

16 Male Married Government worker Got sick and tested 38 years On ART 17 Female Widow Petty trader Husband was sick 47 years On ART

20 Male Married Unemployed Was sick and tested 29 years On ART

The results of this study are organized according to the components of the explanatory model in Figure 1. Some basic distinguishing characteristics of participants are provided

Participants indicated that negative reactions towards them were the major problems they had, affecting the way they cope with HIV/AIDS and leading to non-utilization of healthcare institutions. These negative reactions came from the community, including their close social networks, such as neighbors, family or their spouse. A participant explained the reaction of her neighbors when they discovered the positive status of her and her husband: *'My neighbors found out in the church that my husband and I are HIV positive, they now pursued [sic] (sent away) us from the compound. The landlord and the neighbors drove us away from the compound we are living in because they said HIV will affect them. We live in an uncompleted* 

Some participants, even without revealing their HIV status to their partners, were abandoned because of suspicions of being HIV-infected. Others lived with their spouses although these spouses knew they were HIV-positive. But anticipated public reactions are apparently strong. A participant in the focus group discussion reported being abandoned by

*'I have lived with this man for five years. I have had HIV since then but he accepted it. He even was planning to marry me but then I went on a programme on the radio and his friends recognized my* 

41 years On ART

29 years On ART

45 years On ART

40 years On ART

48 years On ART

40 years On ART

28 years On ART

Company screening 35 years On ART

10 Male Separated Government Worker sent for test after

11 Female Married Unemployed went for test during

12 Female Widow Government Worker Pre-operative test

13 Female Widow Secretary (lost job) Got sick and sent for

14 Female Married Company worker Got sick and sent for

15 Male Single Banker Got sick and sent for

18 Male Single Government worker Was sick and went

*building now.' (Female, 29 years, housewife, participant 7, in-depth interview)* 

her partner when she went public with her positive status:

(lost job)

19 Male Single Company worker

**4. Results** 

after the quote.

**4.1 Stigma** 

verbally from the persons who were interviewed and their anonymity was guaranteed. The aim of the study was explained to them before the interview took place. Interviews were conducted in the English language. Rivers State Agency for the control of AIDS approved the study.

The interviews were held in the resource centre or, in some cases, in people's residences (3 people). All the participants discussed freely the questions and issues covered in the study. The interviews were transcribed from audio tape and analyzed. The software package Nvivo 7 was used to analyze the data and identify major themes from Figure 1. Coding was done by the first author and subsequently validated by an independent researcher, who coded a random selection of data to look for new concepts. Emerging themes were compared by the independent researcher with the coding by the author. New entries and discrepancies were checked by re-reading the transcripts and fine-tuning interpretations until unambiguous categories and themes were agreed.

**Nr. Gender Status Work Reason for HIV test Age ART status**  1 Female Widow Government Worker went for test after the Husband was sick with HIV 40 years On ART 2 Female Widow Government Worker went for test after the Husband was sick with HIV 44 years On ART 3 Female Single Office Worker in Company now unemployed was sick and went for test afterwards 24 years Not yet On ART because of lack of Money 4 Female Single Company Worker was sick and was sent for testing 39 years On ART 5 Female Widow Government Worker went for test after the husband was dying From HIV 45 years On ART 6 Male Single Private Office Worker sent for test after being sick 35 years Take herbs, Fruit, and Vegetable he stopped ART Reacts to ART 7 Female Married Housewife (husband lost job) discovered HIV status during delivery of baby 29 years On ART 8 Female Married Housewife Discovered HIV status during delivery of baby 27 years On ART 9 Female Widow Petty trader went for test after husband died from HIV/AIDS 38 years On ART

Table 1 shows information about the participants

