Sylivia Nalubega. University of Nottingham. 16 th Annual Conference of the National HIV Nurses Association (NHIVNA)

Transcription

1 16 th Annual Conference of the National HIV Nurses Association (NHIVNA) Sylivia Nalubega University of Nottingham June City Hall, Cardiff

2 The views and experiences of HIV research participants in sub-saharan Africa: a qualitative systematic review Sylivia Nalubega Catrin Evans University of Nottingham

3 Presentation outline Background Recommendations Aim and Objectives Discussion and conclusions Results Methods 01/07/ th Annual NHIVNA Conference,

4 Background There is increase of HIV clinical trials in sub-saharan Africa (Lairumbi et al., 2012; London et al., 2012). There is a need to increase research participation whilst also ensuring informed consent and the protection of participants rights (Mbuagbaw et al., 2011; Fitchett, 2009). For ethical research practice, researchers need to be aware of the specific issues pertaining to HIV research Hearing the views of those who participate in the research is essential 01/07/ th Annual NHIVNA Conference,

5 Review aims and objectives Aim To establish the views and experiences of HIV research participants in sub-saharan Africa 01/07/ th Annual NHIVNA Conference,

6 Methods Meta Aggregation Approach (JBI, 2012) Inclusion criteria (PICo) Search Strategy 9 Databases Quality appraisal JBI-QARI Data Extraction JBI-QARI Data Synthesis JBI-QARI 01/07/ th Annual NHIVNA Conference,

7 The metasynthesis process 01/07/ th Annual NHIVNA Conference,

8 Results Eligible papers from hand searching (N=4) Total number of retrieved papers (N=8334) Papers assessed on tittle (N=5979) Papers assessed on abstract (N=435) Papers assessed on full text (N=13) Eligible papers assessed for quality (N=12) Duplicates removed (N=2355) Excluded based on tittle (N=5544) Excluded on abstract (N=422) Excluded on full text (N=5) Excluded on quality (N=1) Papers included in the review (N=11) 01/07/ th Annual NHIVNA Conference,

9 Results cont.. 11 studies 58 findings 8 categories 4 synthesized findings 01/07/ th Annual NHIVNA Conference,

10 Characteristics of included studies Between 2004 and 2012 Quality From 5 countries Mixed participant groups FGDs and individual interviews 01/07/ th Annual NHIVNA Conference,

11 Findings of the review Individuals are motivated to participate Perceived Benefits in HIV to individual research wider society due benefits to a range of perceived individual benefits and also benefits to wider society Others were pressing me until I even decided though to they tell them, told me I that have they decided are doing to research sacrifice but I myself wanted [.] to see If if it they is a were vaccine, going then to help it will me. help other people... 01/07/ th Annual NHIVNA Conference,

12 Findings cont. I think mean people you are can not come supposed [to participate to give birth in an in that HIV vaccine period. So, trial] we but perceived they fear that knowing when their they are HIV giving status this and to stigma us and stay from in people our body when for a long they time know it your will status. cause harm Fears Participation related to to potential HIV in HIV stigma research harm can be associated with considerable fear and uncertainty, mainly due to HIV stigma and worries about potential harm from research interventions. 01/07/ th Annual NHIVNA Conference,

13 Findings cont. "This research was about If I were the positive product..,. I like would the join gel that all these you put into programs the vagina but if it can prevent because STDs."; I am HIV "She said negative they decided I just don t to give care. her AZT because she had had a miscarriage." Misconceptions about research and mixed/poor understandings of the research process and some key concepts are still common Mixed Misconceptions among understandings HIV research about of HIV the participants. research 01/07/ th Annual NHIVNA Conference,

14 Findings cont. Participation in HIV research is strongly influenced by social relationships, socialeconomic and domestic factors, and the nature of interactions with research staff Yes I did have a I am not afraid of problem with my anyone, my husband partner he did not is unemployed so I am want to use condoms. always busy either When I asked him to looking after the use condoms, he said children or something it means I do not trust else to find money ; him. 01/07/ th Annual NHIVNA Conference,

15 Discussion and conclusions Individuals seem willing to participate in HIV research There can be limited understanding of the process HIV research participation may cause anxiety or have negative consequences Sustained participation may become problematic due to social-economic pressure 01/07/ th Annual NHIVNA Conference,

16 Implications for practice and research Explanation of research processes Supporting participants when/if they encounter problems Sensitising the community about HIV research Research staff have a key role to play in all these Research on participants experiences of HIV trial closure is lacking 01/07/ th Annual NHIVNA Conference,

17 References Fitchett, J. R. (2009) Ethical considerations of clinical trials in the developing world. Transactions of the Royal Society of Tropical Medicine and Hygiene 103 (8): Joanna Briggs Institute (JBI) (2012). CSRTP study guide: the systematic review of evidence generated through Narrative and text. Comprehensive Systematic Review Training program. Adelaide, South Australia, Australia.: The Joanna Briggs Institute. Lairumbi, G. M., Parker, M., Fitzpatrick, R. and English, M. C. (2012) Forms of benefit sharing in global health research undertaken in resource poor settings: a qualitative study of stakeholders' views in Kenya. Philosophy, Ethics, & Humanities In Medicine 7 7 London, L., Kagee, A., Moodley, K. and Swartz, L. (2012) Ethics, human rights and HIV vaccine trials in low-income settings. Journal of Medical Ethics 38 (5): Mbuagbaw, L., Thabane, L., Ongolo-Zogo, P. and Lang, T. (2011) The challenges and opportunities of conducting a clinical trial in a low resource setting: the case of the Cameroon mobile phone SMS (CAMPS) trial, an investigator initiated trial. Trials [Electronic Resource] /07/ th Annual NHIVNA Conference,

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