Intergovernmental Organization University of Yaoundé II Institute of Demographic Training and Research (IFORD) Laureate of the United Nations 2011 Population Award EXPERIENCE OF USING WG TOOLS IN FRENCH-SPEAKING SETTINGS An appraisal of the vulnerability of people with disabilities to HIV and other sexual and reproductive risks in Yaoundé (Cameroon) and Bujumbura (Burundi) Pierre De Beaudrap, Co-PI North (CEPED/IRD, France) Gervais Beninguisse, Co-PI South (IFORD, Cameroon)

OUTLINE What is IFORD? Creation and main missions Research & Technical support Programs How did we use the WG tools in our research on people with disabilities? The HandiVIH experience Future directions

What is IFORD? Creation: Main missions: Created on November 9, 1971 following an agreement between the United Nations and the government of Cameroon To cover 23 francophone countries : Algeria, Benin, Burkina Faso, Burundi, Cameroon, Central African Republic, Chad, Comoros, Congo, Congo (DR), Côte d'Ivoire, Djibouti, Equatorial Guinea, Gabon, Guinea, Madagascar, Mali, Mauritania, Morocco, Niger, Rwanda, Senegal, and Togo Went operational in November 1972 The Institute is based in Yaoundé, Cameroon with the status of intergovernmental organization endowed with a legal personality and financial and administrative autonomy. The Institute is academically attached to the University of Yaoundé II without jeopardy on its administrative and financial autonomy Main missions: Training of high level experts in population sciences (Master & Ph.D.) ; Improvement of knowledge on population issues especially through the carrying out and promotion of research; Technical support to member countries and development partners

What is IFORD? Research Program : 5 broad areas Sexual and Reproductive Health Population, Environment and Development Migration and Development Gender, societies and demographic behavior Demographic Dividend Technical Support to countries members and Development Partners: Collection, analysis and valorization of socio-demographic data (census, surveys and administrative data) including quality assurance ; Collection and analysis of data in emergency situations and from vulnerable populations; Design, Monitoring and Evaluation of sector-specific policies (health, education, employment, etc.); Social development analysis; Capacity building of national executive officers in data collection and analysis.

Achievements in the Training Programs: What is IFORD? Achievements in the Training Programs: More than 900 Demographers trained at Master level, representing about 95% of Francophone African Demographers 4 PhD graduated Current research projects using WG questionnaires Disability and HIV: Vulnerability to HIV of people with disabilities in two main cities of Sub-Saharan Africa (Yaoundé, Ouagadougou) (HandiVIH) funded by ANRS, Sidaction and the 5% Initiative (France); Sexual and Repro, ductive Health of youth and adults with disabilities in Bujumbura - Burundi (HANDI-SSR) funded by NOW-WOTRO.

How do we use the WG tools in our research on people with disabilities? 2 Research projects on Sexual and Reproductive Health: Disability and HIV: Vulnerability to HIV of people with disabilities in tow main cities of sub-Saharan Africa (Yaoundé, Cameroon) (HandiVIH) Survey implemented in 2015 using questions of the short and extended WG questionnaires; In-depth data analysis is underway Publications and communications of results: workshop to present results to policy makers Documentary film (on youtube) https://youtu.be/VYYD_e5mJe4 “HandiVIH-A population-based survey to understand the vulnerability of people with disabilities to HIV and other sexual and reproductive health problems in Cameroon: protocol and methodological considerations” (BMJ open, 6 (2), p. e008934. DOI : 10.1136/bmjopen-2015-008934) “Assessing HIV prevalence and vulnerability factors among People with Disabilities in Cameroon: overcoming methodological issues” (ICASA, Harare, Zimbabwe 29 November - 4 December, 2015) “Higher prevalence of HIV infection among people with disabilities: results of a population-based observational study in Yaoundé, Cameroon (HandiVIH)” The Lancet HIV (accepted) Sexual and Reproductive Health of youth and adults with disabilities in Bujumbura - Burundi (HANDI-SSR) funded by NOW-WOTRO The study has started in September 2016 Survey to be done from April 2017 to March 2018 using questions of the short and extended WG questionnaires

The HandiVIH experience Disability and HIV: an appraisal of the vulnerability of people with disabilities to HIV infection in Yaoundé, Cameroon

Objectives General: to document quantitatively and qualitatively the vulnerability of people with disabilities to HIV Specifics: HIV prevalence and risk factors KBP (HIV, and SRH) Access to prevention and health Sexual violence Reproductive and sexual health Quantitative Yes Explo Qualitative - Targed Targeted Explo and targeted

Methods Design: Population: Procedures: Population based study (Yaoundé, Cameroon) Cross-sectional and comparative (control group) Population: People with disabilities: Age: 15 to 49 years Washington Group questionnaire: ≥ 1 major difficulty or 2 minor difficulties (>1 year) Visual, hearing, physical, intellectual/mental limitations considered Controls matched on age, sex and residential area Procedures: Two stages sampling Face to face interviews On site HIV testing using to rapid tests

90751 persons screened (21869 households) Identification of people with disabilities eligible and of their controls Socio-demographics characteristics Habitat & wealth characteristics Disabilities and eligibility Screening team Phase 1: Screening Oct. 2014-Oct. 2015 + 90751 persons screened (21869 households) 12,9% with ≥1 functional limitations 2,3% meeting inclusion criteria Tirage aléatoire de zones de dénombrement Recensement complet des zones de dénombrement

90751 persons screened (21869 households) Identification of people with disabilities eligible and of their controls Socio-demographics characteristics Habitat & wealth characteristics Disabilities and eligibility Screening team Phase 1: Screening Oct. 2014-Oct. 2015 + 90751 persons screened (21869 households) 12,9% with ≥1 functional limitations 2,3% meeting inclusion criteria Phase 2: Interview of eligible subjects Nov. 2014- Nov. 2015 Disability team Interviews about Disability and social participation Life-course history KBP HIV & FP Reproductive Health Access to services and health care including environmental barriers THIV test PwD=807 et Controls=807

Specificities of HandiVIH Adoption of a disability-inclusive approach; Use of a qualitative exploratory phase to adapt processes and tools; Questions about the composition of the household asked several times; Use of signs language translators as interviewers and adaptation of the various tools to participants’ needs: picto, dolls, training of nurses and interviewers, etc.; Adoption of a life-course approach to better understand the link between HIV and disability Helps to identify sequences of risks & trajectories associated to HIV; Allows to compare life-course trajectories between: (i) PwD & those without; (ii) PwD across different type of impairments; It is a cheaper alternative of longitudinal studies with adequate accuracy and reliability

Contribution of the WG questionnaires in the HandiVIH study The WG questionnaire detected people experiencing difficulties in carrying out their daily activities because of long-term health problems and/or disability without the lack or inadequacy of resources being involved. For this purpose, it was used in two phases: 1. The screening phase The short set questionnaire, comprising 8 questions, made it possible to detect people with difficulties that prevent or reduce their ability of carrying out their daily activities without any inadequacy or lack of resources being involved. 2. Interviews with eligible subjects This phase started with a stage of confirmation of the disability status of the persons selected in the screening phase (PwD and controls) using the 16 questions of the extended WG questionnaire. The Confirmation of subjects' disability status led to their eligibility for the in-depth interview. Peut-être mentionner que nous avons utiliser le short set (6 questions) + 2 questions pour mieux capturer les troubles intellectuels / psy Je pense que cela vaut le coup de détailler le processus de formation des enquêteurs screening sur l’utilisation du questionnaire du Washington Group

Contribution of the WG questionnaires in the HandiVIH study At this intermediate stage, the extended WG questionnaire enabled a meticulous verification of inclusion criteria by rephrasing the questions posed in order to avoid recruiting "false positives" and "false negatives", because, sometimes the respondents easily answered "yes, I have difficulties to ..." to questions for various reasons: They did not always understand the meaning of some questions. For example the question on "difficulties to hear" was sometimes considered "difficulties to understand". The verb to hear can sometimes mean to understand for some people. Thus, the sentence was reworded as follows: "Do you have any difficulty in perceiving sounds, voices or music with your ears?” Some people talked about punctual difficulties even if they lasted for more than 1 year. For example, many mentioned "difficulties in seeing in the morning when they wake up and look at the sun". They were focusing on a short moment of the day. They frequently referred to financial difficulties because many respondents thought they were going to get help from the team. It was possible that the respondents preferred to say that they had difficulties just to give themselves greater chances to obtain assistance. Peut-être ajouter que les questions sur les limitations fonctionnelles mesurées par le WG sont complétées par des questions sur la participation sociale et les barrières environnementales.

Some results

Prevalence of disability Persons screened N =90751 12,9% with ≥1 functional limitations 2,3% meeting inclusion criteria 807 PwD and 807 Controls included

OR d’infection VIH chez les PH vs PT: 1.7 [1.03 – 2.83] HIV infection OR d’infection VIH chez les PH vs PT: 1.7 [1.03 – 2.83]

Risk of HIV infection ORcond = 1.7 [1.03 – 2.83]

Risk of HIV infection ORcond = 1.7 [1.03 – 2.83]

Risk of HIV infection ORcond = 1.7 [1.03 – 2.83]

Future directions In-depth analyzes, publications and communication of HandiVIH results to policy makers (policy briefs) Sexual and Reproductive Health of youth and adults with disabilities in Bujumbura - Burundi (HANDI-SSR) funded by NOW-WOTRO (Data collection in 2017) IFORD, as part of its technical support mission to population censuses in its member countries, is committed to promoting the use of WG tools in these censuses. This is the case of the forthcoming censuses of Cameroon and Mali which are being prepared with the technical support of IFORD. Dans les conclusions, je pense qu’il est important de dire que l’expérience que nous avons eu montre l’importance de la formation des enquêteurs et du pilotage initial.

Thank you for your kind attention.