Convention Centre 7 – 9 November 2012 Ezulwini , Swaziland WINNIE N T NHLENGETHWA

1. AN EXPLORATORY STUDY ON HEALTH AND SOCIAL NEEDS OF WOMEN WITH HIV/AIDS IN SWAZILANDHEALTH SYSTEM STRENGTHENING FOR IMPROVED HEALTH OUTCOMES Convention Centre 7 – 9 November 2012 Ezulwini, Swaziland WINNIE N T NHLENGETHWA Ph.D., FNP, Dip. SRH, SCM, RN

2. INTRODUCTION • Swaziland has the highest HIV infection (26%) in the world (GOS, 2007; 2010). • HIV has devastating effects on the lives of women with female prevalence at 31% compared to 20% for men (within age group of 15-49 years) • HIV impact compounded by unemployment, drought and lower levels of national production • interventions not so effective to mitigate the impact though awaiting 2009 Quality of Impact Mitigation Survey results.

3. LITERATURE ON HIV STATUS DISCLOSURE • Few studies that have examined HIV disclosure in women • Available evidence suggest that women have a tendency not to disclose HIV status to their partners and others (Maman, et.al., 2001; Maman, et.al., 2002; Medley et.al., 2004;Nsabagasani and Yoder, 2006 ) • Difficulty to disclose is associated with fear of stigmatisation, verbal and physical abuse, abandonment and loss of support (Gielen et al., 1997; Moneyham et al., 1996; Rothenberg et al, 1995; Simoni et al., 1995; Sherr, 1996; Simoni et al., 2001; International Center for Research on Women, 2002; Mbambo, Nyblade, Mathur, Kilonzo, Kopoka & MacQuarrie, 2002; Black and Miles, 2003; Black and Miles, 2003; Simbayi , et.al., 2007) • There is dearth of HIV disclosure models for HIV seropositive women

4. PURPOSE • This study was to explore the health and social needs of women with HIV (WWH) in Swaziland with the aim of generating an in depth understanding of the scope of the problem from their perspective. It was hoped that this understanding would lead to development of a realistic HIV disclosure model and relevant modes of interventions and recommendations for improvement of the HIV/AIDS policy in Swaziland.

5. AIM AIM The aim was to capture the structure and processes characterising health and social needs of WWHs based on their perspective for the generation of an HIV disclosure model.

6. RESEARCH QUESTIONS The intention was to answer the research question: Is there a basic process and structure that captures the health and social needs of WWH in rural and urban areas in Swaziland?

7. SIGNIFICANCE OF THE STUDY The outcome of the investigation would contribute to: • the design of practical and realistic interventions • development of health and social policies for WLWHAs in Swaziland. • extend existing theory and models in the substantive area of HIV/AIDS.

8. METHODOLOGY PHILOSOPHICAL UNDERINNINGS Since the nature of the study sought to generate needs and explain the processes and interactions related to how WWH’s resolved their problems, a symbolic interactionism's perspective was appropriate as a basis to discovery (Blumer, 1962; 1967; 1969; Mead, 1934)

9. METHODOL0GICAL DESIGN • In keeping with this perspective and my philosophy of generating knowledge, Grounded Theory (GT)research design was relevant and fitting to guide the processes of this study. • GT places emphasis on generating concepts and their relationships inductively ‘that explain, account for and interpret the variation in behaviour in the substantive area under study’ (Glaser, 1992). • The process of discovery of theory is systematic and inductive (Glaser and Strauss, 1967).

10. RESEARCH METHODS DATA COLLECTION • In keeping with grounded theory methods to collect and analyse data, this study used audio taped, face-to-face, in-depth interviews (unstructured) to capture the basic structure and social process used by WWHAs to resolve their problems. • In-depth interviewing is a reliable method, which best captures people’s accounts of their personal experiences in order to gain an in-depth understanding of their needs (Manson, 2002).

11. SAMPLING OF PARTICIPANTS Purposeful sampling was used to select 30 participants from selected Counselling Sites for the interview. This method is in keeping with GT which allows the researcher to choose participants deliberately based on theoretical relevance (Glaser and Strauss, 1967; Glaser, 1978).

12. SELECTION OF PARTICIPANTS Participants were Drawn From The ff. Counselling Sites The AIDS Support and Information Centre (TASC), Caritas, Mankayane Government Hospital, Goodshephered Hospital, Dvokolwako clinic, Emkhuzweni Health Centre and the Swaziland AIDS Support Organisation (SASO).

13. SELECTION CRITERIA Women had to meet the following criteria to qualify to participate in this study: • HIV seropositive result. • More than six months experience living with HIV. • 18 years and above. • Permanent residence in Swaziland. • Willing to participate in the study.

14. DATA ANALYSIS Data was transcribed and analysed using coding and constant comparison methods by Glaser and Strauss (1967). Concepts generated from interview transcripts were grouped into thematic areas through theoretical sampling.

15. DATA ANALYSIS After analysing data from 15 interview transcripts, it was evident that the major issues emerging from this study were: • difficulties in telling others about their HIV diagnosis, • managing health problems, • acquiring social support ,and • accessing treatment. These were major issues of health and social need that were further validated through theoretically sample women with the relevant experience to confirm the emerging pattern of disclosure and how these problems were resolved.

16. DATA ANALYSIS • The process of selecting participants stopped upon realising that the same conceptual categories were repeatedly emerging. • Theoretical saturation for the main categories was reached after analysing transcript 23. • According to Glaser and Strauss (1967), theoretical sampling ceases when no new concepts emerge, that is when theoretical categories are ‘saturated’ (p. 102)

17. RESULTS (CONT…) The area “difficulty to disclose the HIV diagnosis” became a core category depicted the following pattern: Coming to Know of One’s HIV Positive Status Receiving the HIV Label Responding to Being Labelled Taking Cover Concealing Disconnecting

18. RESULTS (CONT…) A pattern of disorder eventually unfolded into an ordered pattern of behaviour, depicting a process, hence carrying the burden of disclosing the HIV diagnosis.

19. RESULTS (CONT…) Upon further theoretical sampling an unburdening process was emerged and systematically ordered into the following major and sub thematic areas: Accepting the HIV Label Giving-in Calculating the Risk Coming Out Sharing Selectively Going public

20. RESULTS (CONT…)EMERGENCE OF HIV DISCLOSURE MODEL

21. DISCUSSION OF RESULTSCarrying the Burden of Disclosing The HIV Diagnosis • HIV positive women in Swaziland identified ‘hurdles’, ‘bottlenecks’ and ‘roadblocks’ which prevented them from meeting their day-to-day health and social needs as they interacted with others. • Problems of HIV positive women identified described the multiple and challenging demands of disclosing their HIV positive status to others and living with a deadly and stigmatised disease. • HIV diagnosis was described as a burden that was difficult to share with anyone. Words like ‘difficult’ , ‘not telling’ and ‘burden’ were frequently used by interviewed WWHA in relation to disclosing the HIV diagnosis. • Women also described the burdens of keeping their diagnosis secret and how difficult it was taking care of self and caring for others with limited support as well as keeping harmonious relationships with family members, especially their partners. • Data analysis revealed a disordered pattern of personal life events immediately following confirmation of the seropositive status, which had a major emotional impact on most women in this study resulting in “taking-cover”.

22. DISCUSSION OF RESULTSCONTEXTUALISING CARRYING THE BURDEN OF HIV DISCLOSURE PROCESS The findings in this study revealed that • carrying the burden of HIV disclosure is difficult & complex process • coming to know one’s HIV positive diagnosis was the main trigger to the processes of carrying the burden of HIV disclosure • acceptance of an HIV positive status was an important step as it may have led to HIV diagnosis disclosure • telling others about the HIV diagnosis was a risk which led to most WWHA 'taking-cover'

23. SUMMARY DISCUSSION OF RESULTS (cont…) The results further showed that the burdening process of HIV disclosure operates within a social context of : • fear of stigma, discrimination, abandonment and rejection; • ignorance on HIV/AIDS and sexuality issues; • strong and embedded cultural beliefs; and • uncertainty about the HIV disease

24. DISCUSSION OF FINDINGSCONTEXTUALISING CARRYING THE BURDEN OF HIV DISCLOSURE PROCESS ‘Taking-cover’ acted as a deterrent to accessing support, yet social support tends to buffer stressand feelings of hopelessness(Lane and Wagner, 1995)

25. IMPLICATIONS FOR SERVICE DELIVERY(RECOMMENDED STRATEGIES) • Advocate for HIV serostatusdisclosure to re-inforceprevention of HIV/AIDS (CDC, 2002; WHO, 2004; Lugalla, et. al., 2008) • Identify HIV positive women with health & social challenges and strengthen their psychosocial support (2011 • Strengthen links between HIV positive women and community support system • Integrate gender perspective in HIV/AIDS prevention and control programmes • Improve access to reproductive health services and consider a merger of HIV/AIDS and STI programmes • Improve access to HIV prevention, treatment and care services • Demystify stigma and discrimination • Improve economic and social status of WWHA

26. POLICY IMPLICATIONS(RECOMMENDED STRATEGY) • REVISE HIV/AIDS POLICY TO CAPTURE WOMEN NEEDS • ALLEVIATE POVERTY

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