Published on January 3, 2008
Rethinking Preventive Counseling in the Era of ARVs: Rethinking Preventive Counseling in the Era of ARVs Implications for Research Eileen Moyer, PhD Amsterdam School for Social Science Research University of Amsterdam Implications for research : Implications for research What’s needed? Prioritize research agenda What research is needed to improve preventive counseling? Are there other/better avenues for prevention? Has been done already? Examination of range of counseling services currently being provided – what works/what doesn’t/costing (desk study?) How does it need to be done? We have very little evidence about what’s working on the ground (group counseling/community level interventions vs. individual interventions for behavioral change). Does pre-test counseling works; Opt-out; targeting groups (adolescents); What type of research is appropriate in different settings -- specificity vs. generalizable? Barriers to research? Defining Research -- I: Defining Research -- I Evidence-based Whose evidence counts? Recognition that “evidence” is a product of a a particular scientific/philosophical culture, co-produced by adherents everywhere. Scientific evidence (and the questions we ask) must vie with (and be understood in the context of) politics, religion, norms, morals, etc., that may be at odds with evidence. Clinical evidence that something works is not the same as social evidence -- proof that something works in context/everyday situations. (ex., PMTCT). Use of case studies/best practices to influence policies. Issues of scale: sometimes one case study is not enough to influence policy; multiple sites. Differentiate between evidence-based evaluations of interventions and evidence-based generative research. Defining Research -- II: Defining Research -- II How/what to measure? Need better tools for evaluating effectiveness of counseling/need to determine how effectiveness is understood (lower HIV rates/reported behavior change/improved knowledge/decreased discrimination/improved quality of life) Improved standards/methodology for research – researching the researchers. Differentiating between M & E (integrated into existing programs) and outside, “independent” research. How to combine qualitative and quantitative methods? Range of methods – triangulation – observation, discussions, interviews, surveys. Should public health models replace rights-based, humanistic approaches (with their attendant connection to reaching ‘vulnerable’ populations? Public health as a social science vs. a sub-discipline of medicine? Defining Research III: Defining Research III Examination of relationship between research/expertise, policy makers, donors, and implementors. (ex., evidence as a rubber stamp; do we want to produce “evidence” to influence policy; Knowledge management issues; what form should reports/publications take?) Examination or relationship between research/expertise and subjects/objects or research (researchers as part of the problem). (Feedback to the community) Ethical issues: researchers competing for research subjects; issues of remuneration (money, food, travel allowances, gifts); informed consent. Do we need international standards for these issues? Counseling research: Counseling research Redefining/rethinking/re-emphasizing Examination of counseling as a social phenomenon Language, Training, Power Opportunity to both challenge and reinforce the status quo in regards to stigma/discrimination (particularly gender/generation/heteronormativity/issues of respect) What are conducive environments for counseling? How to measure the quality of counseling. VCT M&E tends to focus on numbers of people tested. Is counseling always necessary; can people refuse counseling and still get tested? Examination of existing counseling practices -- effectiveness of different models: collective counseling/home-based counseling (& testing), lay counseling, faith-based counseling. How important is confidentiality? What is the effect of mixed messages/different modes of counseling. The role of faith-based messages in all counseling. Sexuality research: Sexuality research Whose sexuality? Whose scale of intimacy? Whose normative ideals? Attention to non-heteronormative sexuality; non-reproductive sexuality? Can we disentangle talk about sexual desire and reproductive desire? What is considered a conducive environment for counseling on sexuality? Re-examine WHO conceptual framework Research on minimum standards for creating environment Research on children & Sexuality Research on quality of current training efforts. Stigma and Discrimination Research: Stigma and Discrimination Research How to measure/address stigma effectively? Should/can HIV stigma be disentangled from other stigmas? What political/religious/moral challenges result if efforts are undertaken to fight stigmas that contribute to HIV stigma (gender/age/socio-economic status/CSW/CSW clients/IDU/alcoholics/promiscuous behavior)? How effective are stigma reduction efforts directed at patient vs. community vs. national level? How important is context (specific vs general guidelines?) Need to develop better tools/indicators for measuring stigma. Evaluate the usefulness of existing indicators/tools (context/time bound) What interventions are effective for reducing self-stigma What is the relationship between stigma, phase/intensity of the epidemic? Learning from stigma reduction efforts for other diseases (leprosy, epilepsy, etc.); similarities and differences. Community Participation Research: Community Participation Research Feedback research to community Community involvement in setting research goals/objectives? Determine community appropriateness of Measuring and Evaluation. Examination of the practice of participatory methods. How do we define/bound communities (need to examine mobility, migration, tourism, etc.)? PMTCT/VCT Research - I: PMTCT/VCT Research - I Low utilization studies: How to reach wider populations (most people do not know their status; up to 1/3 do not return for test results). Relation to stigma? Examination of what is happening on the ground (current practices out-pacing guidelines). Gender differences, particular attention to men and masculinities If/how stigma, discrimination and processes of exclusion limit testing options for vulnerable populations. Public vs. Private services PMTCT/VCT Research - II: PMTCT/VCT Research - II Effect of knowing status on BC Outcomes of “opt-out” approach in different sites/services (medical/fp/sh clinics) How to deal with HIT+ women who want children Effect of counseling on uptake of testing, prevention, BC Which factors limit/encourage people to go for testing (gender) Effects/feasability of couples counseling Risk perceptions of pregnant couples Why women refuse testing in ANC sites What women gain (social/economic support)? from PMTCT? Technology Research: Technology Research Why are people still reluctant to come forward for testing? Do all technologies need detailed counseling or can some become over the counter products? What do people understand about messages of partial efficacy? What messages might prevent behavioural disinhibition? What messages are required for different tagret audiences, e.g., pre-adolescents and adolescents, high risk groups? Adherence Research: Adherence Research How to measure interventions? How do we define/de-limit adherence? Examination of what is happening on the ground (current practices out-pacing guidelines). Contextualizing of adherence counseling practices in lived realities. Are we contributing toward new stigma toward those who experience treatment failure on ART by over-emphasizing the relationship between adherence and success?