Kampala Key Population's AIDS Survivors And Resilience Advisory Committee-KASRAC
MOST AT RISK POPULATIONS' SOCIETY IN UGANDA SOGIHIV Plan 2017-2027
The Four Way Approach:
We have developed considerable tools to help capture a universe which in turn can raise awareness on issues to do with normativity. We have in turn gained skill and expertise in many areas but some critical product categories we are very confident in are captured in our SOGI Plan 2017-2027:
The SOGI Plan 2017-2027: Sexuality Spectrum and its day-to-day application
The SOGI Plan 2017-2027: Orientation Spectrum and its day-to-day application
The SOGI Plan 2017-2027: Gender Spectrum and its day-to-day application
The SOGI Plan 2017-2027: Identity Spectrum and its day-to-day application
The above can only be well tackled when we have in turn addressed: the meaning of “End to HIV”; HIV Criminalization; communicating SRH preferences appropriately.
NB. Join our SOGIHIV Law Uganda email list please. Yes, we have one.
NB. Join our SOGIHIV Law Uganda email list please. Yes, we have one.
1. End to HIV
Our theory of change uses Mobilization, Education, Dissemination (MED) to impart knowledge, ensure transformation and encourage engagement in activities promoting change. When we talk about “End to HIV” we want to communicate appropriately and these are the areas we include in ensuring a catalytic literacy and muscle level activity:
1. Prevention & Control Infrastructure needed for providing services
2. Community Mobilization and Organization
3. Testing to know one’s status
4. Attending clinic for individual assessment
5. Checking for or treating opportunistic infections
6. Checking for other viral infections
7. Pap smears
8. Screening for cancer ( breast, anal, oral, lung, prostate….)
9. Support to quit smoking
10. Health education
11. Provision of Information, education and Communication materials
12. Access to safe motherhood services
13. Access to Mother and Child Health Services
14. Diabetes screening
15. STIs screening
16. UTI screening
17. Anal screening
18. Pregnancy testing
19. Treatment for STIs/UTIs
20. Physicals
21. Mammograms
22. High blood screening
23. Mental health care
24. Referral services
25. Tetanus vaccination
26. Thyroid screening
27. Anaemia testing
28. Modernizing Criminalization laws
29. Engaging in bursting stigma
30. Engaging in bursting discrimination
31. Acknowledging and recognizing what works
32. Trickle down services to individual recipient
33. Trained health care provider
34. SRH-specific needs
35. Family planning needs
36. Gender-specific planning needs
37. Traditional public health
38. social interventions
39. Biomedical approaches to HIV and integration of services with broader health systems
40. Zero HIV-related deaths; zero-stigma; zero discrimination
2. HIV Criminalization
HIV Criminalization is one area where we want to increase our engagement at policy level so as to effect change. We shall do this through social marketing, media advocacy and community organizing to promote meaningful involvement of people living with HIV (PLHIV) in having their say as well as leading productive lives. PLHIV are impacted by services they require e.g., health care, medication, housing, communication and modernization of policy. In using the three approaches, there are inbuilt advantages including cultural competency (Bentacourt J.R. 2005), tackling stigma and improving the quality of life for those living with HIV.
Through social marketing it is possible to influence practices at different levels e.g., decision-making; experts; implementers; speakers; contributors; target audiences (who are almost always not realized to be the subject matter (illnesses) experts). Social marketing, provides opportunities to implement practices by: accepting a new behavior, e.g., health facilities coming up with say, support meetings and regularized events for people living with HIV; reject a potential undesirable behavior, e.g., adopt language that is not stigmatizing of PLHIV; modify a current practice or behavior, e.g., encourage input in planning and managing of services by PLHIV; abandon an old undesirable behavior, e.g., using preferred language to reduce stigmatization of PLHIV such as adopting the use of terms like mixed status couple/serodifferent and not serodiscordant or use a people first language that emphasizes the person and not their diagnosis (Lynn V. 2016). Social marketing analyses neighborhoods or key populations and provides appropriate interventions (Farr, M., 2008). Social marketing promotes participation of consumers in designing mechanisms for airing out their own needs. It is also a mechanism for soliciting solutions from consumers. It sets the stage for healthy outcomes for all population groups and operationalizes policy for well being in society. Social marketing applies principles and techniques to create, communicate and deliver value to influence target audience practices or behaviors that benefit society and target audience (Correil, J., 2010) . For it to be effective, it employs the 4 P’s marketing mix strategies. By 4 P’s is meant: product; price; place; and promotion. It integrates the 4 P’s in any behavior change, maintenance or adoption strategy. Social marketing is employed in the following areas:
- Health promotion-related issues such as: housing, fruit and vegetable intake, heavy binge/drinking, safety in cars, drinking and driving, storage of dangerous materials in homes, tobacco use, breastfeeding, obesity, teen pregnancy, STI’s prevention, oral health, immunization, diabetes, eating disorders and blood pressure.
2. Injury-prevention related behavioral issues such as: syringe exchange sites, decriminalization, safety in cars, drinking and driving, storage of dangerous materials in homes, avoiding falls in buildings, gun storage, domestic violence, injuries, drowning and suicides.
3. Environmental protection- related behavioral issues such as: waste reduction, wild life habitat protection, forest destruction, toxic fertilizers and pesticides, water conservation, air pollution, litter, avoiding unintentional fires and energy conservation.
4. Community mobilization-related behavioral issues such as: safe drinking water campaigns, mosquito net use, decriminalization of HIV, blood donation, literacy, voting, animal adoption, increase utilization of public health services, combat chronic diseases and promote healthy living.
Media Advocacy, is when different communication means are utilized to deliver a message/s that promote/s healthy outcomes (Pérez, L., & Martinez, J. 2008). The communication means can be such as: news broadcast, social media, instant messaging, advertising, skits, information bulletins, public relations, social events, public meetings, exhibitions, sponsorships and use of platforms to continue with a given conversation on healthy outcomes.
Community organizing, is effective when communities are mobilized to address certain issues as well as empowered to participate in decision-making. This is effectively done when pretesting/piloting, monitoring and evaluation are integrated in the strategies or initiatives (Pulliam, R. 2009). Community organizing is influenced by the social, cultural and regulatory environments prevailing to maximize effectiveness. The events around which organizing occurs may range from: modernizing laws, immunizations to treating Hepatitis. Community organizing is done to yield behavior change or maintain a positive practice (Galer-Unti, R. A., Tappe, M. K., & Lachenmayr, S. 2004). For meaningful involvement of people living with HIV, organizing is done around: core practice; actual practice; and augmented practice. The core practice in this case is: providing empowerment for PLHIV to articulate correctly issues pertaining to them in an intervention planning event. The actual practice will be: creating space at the table for PLHIV to bring their expertise. The augmented practice in this case can be: hearing first hand accounts that can be used to inform planning and policy.
3. Communicate SRH preferences appropriately
Our work with empowering Young MSM born with HIV (YMSMPoz) to communicate SRH preferences appropriately revealed other vulnerabilities.
MARPS in Uganda created the #YMSMPoz as an internet ribbon cutting ceremony to celebrate working with 278 HIV positive sexually active Young MSM below 35 years. 97 of them are 25-29 years; 81 are between 22-25 years; and 100 are between 17-22 years. All 278 are taking medications. 175 do not identify as LGBTIQQ. 180 use some form of substances. All of them have missed their medications at one time in the previous six months. 189 engage in a form of talent and performing art but, have had no chance of exploring their talents under a more talented mentor or instructor.
YMSMPoz has been a culmination of events. In 1997, we worked as an orphan support organization in Uganda and by 1997 had 25 young children living with HIV we were caring for. We could not look after the children so we handed them over to another organization as we were changing our objectives to work with MSM. In 2000, some of the former children came back to us, revealed they were sexually active and regularly engaged in unprotected anal sex with other boys. This was in the suburbs of Kampala City Authority. We later found out that there are many more abandoned children on the streets who were engaging in unprotected survival sex. We have since worked with many more but we do need to be supported. We want to provide condoms, other birth-control methods and provide appropriate referral for those who want to have expressed the desire to have children.
It was important to formalize formation of a viable YMSMPoz support club; we use the platform for empowerment to communicate SRH needs appropriately; and establish the YMSMPoz support center for former male street children who have sex with men. Developing unique information, education and communication materials on the intersection of homelessness, helps inform policy and programming targeting survival sex-work and HIV in Uganda. Writing using simple and easy to read English provides information which is accessible and a service to make beneficiaries informed consumers.
MARPS In UGANDA’s LGBTIQQ sexual and reproductive health (SRH) package focuses on three priority areas (Individual needs/ expectations of services/ Influences of the larger community:
1. Integrating gender and sexual choices, childbearing choices, maternal and newborn care skills
2. Services for preventing and managing sexually transmitted infections/ hematological(blood), oral, vaginal and anal infections
3. Engaging in support mechanisms to align pressures with the goal of healthy outcomes
BACKGROUND:
In Uganda, SRH package delivered through primary health care ((Katherine Williams, Charlotte Warren & Ian Askew. 2010) with referrals and has the following standards of care:
• Family planning/birth spacing services
• Antenatal care, skilled attendance at delivery, and postnatal care
• Management of obstetric and neonatal complications and emergencies
• Prevention of abortion and management of complications resulting from unsafe
abortion
• Prevention and treatment of reproductive tract infections and sexually transmitted
infections including HIV/AIDS
• Early diagnosis and treatment for breast and cervical cancer
• Promotion, education and support for exclusive breast feeding
• Prevention and appropriate treatment of sub-fertility and infertility
• Active discouragement of harmful practices such as female genital cutting
• Adolescent & Adult sexual and reproductive health
• Prevention and management of gender-based violence.
YMSMPoz, is a unique platform and knowledge hub for a section of population fast gaining in numbers in Uganda. The youth who were born with HIV and those who have had anal sexual intercourse are the target for this service. It is our hope this will improve decision-making for quality health outcomes. As part of building a prevention and care movement in Uganda, we shall leverage our linkages through the 6 building blocks around which health services are provided in Uganda. These blocks are:
1. Service Delivery: continue exploring how best service can be available in form of friendly, effective, safe and quality interventions for improving SRH status;
2. Human Resources: to empower youths to engage in self-care awn well seek medical care to achieve the best health;
3. Health Information: to use reliable and timely information on health system performance, as well as health determinants and status;
4. Medicines and Technologies: to ensure equitable access to products and technologies that are of assured quality, safety, efficacy and cost-effectiveness;
5. Health Financing: to provide opportunities to young consumers to use needed services and are protect them from impoverishment through having to pay for them.
6. Leadership and Governance: to ensure a strategic policy framework exists, together with effective oversight and accountability.
4. Tailored Services:
Education services and gender planning (biological and cultural genders)
Education and services on gender and sexual planning
Education and services on voluntary family planning information
Education and services on healthcare including HIV/HPV testing and management
Education and services on anal cancer screening. Hostility to men-who-sex-with-men seeking health services is documented (SMUG, 2015). However, MARPS IN UGANDA, has medical doctors who can be facilitated to provide anal-health care services.
Education and services on sexuality, orientation, gender and identity (conforming and non-conforming identities)
Education and services on gender-based violence like correction-rape, genital mutilation, early and forced marriage. Anti-gay movements create hostile climate which demotivates service providers, drives beneficiaries underground and raises acts of violence toward LGBTIQQ. Uganda criminalizes homosexuality but as a signatory to the UN Declaration of Human Rights it is called upon to uphold human rights standards. All persons have a duty to seek out information or counsellors with training to guide them as they make SRH plans and choices. There are different organizations in Uganda with qualified health educators and counsellors. One such organization is Spectrum Uganda Initiatives (Spectrum Uganda Initiative).
YMSMPoz Counselling Package involves:
• Sexuality, Orientation, Gender and Identity Counselling
• Individually-tailored assessment for better health outcomes provides opportunities to meet SRH needs at individual levels and open ways for referral (Lambda Legal)
• Provision of education or services on HIV/AIDS & STIs
5. Seminars on Mainstreaming HIV, Human Rights and SOGI in all our work
Integrating HIV & STI Programs in LGBTIQQ, MSM, WSW, Sexuality, Gender, Orientation, Health and Wellness plans
You are an LGBT-Living with HIV or HPV, you have been asked to attend a Global Fund Planning meeting. This meeting is convened after realizing the umbrella organization which was identified to manage the funds did not have an inclusion plan.
Ask yourself, what would be the best parameters to frame your needs and therefore move toward problem solving.
The answer lies in:
Human rights:
Acceptability of services is a key aspect of effectiveness
Health literacy
Community empowerment
Three zero’s
Sexuality, Gender, Orientation and health
Guiding principles for implementing comprehensive HIV and STI programs
Several principles underlie the 2011 Recommendations and 2014 Key Populations Consolidated Guidelines and the operational guidance given in this publication. These principles are described in the 2014 Key Populations Consolidated Guidelines (pp.11–12). They may be summarized as follows:
Human rights:
Protection of human rights for all members of each key population. Legislators and other government authorities should establish and enforce anti discrimination and protective laws, derived from international human-rights standards, in order to eliminate stigma, discrimination and violence faced by key population groups and to reduce their vulnerability to HIV. Access to quality health care is a human right. It includes the right to appropriate quality health care without discrimination. Health-care providers and institutions must serve beneficiaries based on the principles of medical ethics and the right to health. Health services should be accessible to all. HIV programmes and services can be effective only when they are acceptable and high quality and widely implemented. Poor quality and restricted access to services will limit the individual benefit and public-health impact of the recommendations contained in this guidance document. Access to justice is a major priority for key populations, due to high rates of contact with law enforcement services and the current illegality of their behaviours in many countries. Access to justice includes freedom from arbitrary arrest and detention, the right to a fair trial, freedom from torture and cruel, inhuman and degrading treatment and the right, including in prisons and other closed settings, to the highest attainable standard of health. The protection of human rights, including the rights to employment, housing and health care, for key populations it requires collaboration between healthcare and law-enforcement agencies, including those that manage prisons and other closed institutions. Detainment in closed settings should not impede the right to maintain dignity and health.
6. Acceptability of services is a key aspect of effectiveness:
Interventions to reduce the burden of HIV must be respectful, acceptable, appropriate and affordable to recipients in order to enlist their participation and ensure their retention in care. Services delivery must often employ appropriate models of service delivery with expertise in HIV. There is a need to build service capacity on both fronts. Services that are acceptable are more likely to be used in a regular and timely way. Consultation with organizations led by and including community outreach workers in service delivery are effective ways to work towards this goal. Mechanisms of regular and ongoing feedback from beneficiaries to service-providers will help inform and improve the acceptability of services.
7. Health literacy:
A lack of sufficient health and treatment literacy, may hinder decision-making on HIV risk behaviours and their health-seeking behaviour. Health services should regularly and routinely provide accurate health and treatment information. At the same time health services should strengthen providers’ ability to prevent and to Integrate service provision: Multiple co-morbidities and poor social situations for example, HIV, viral hepatitis, tuberculosis, other infectious diseases and mental health conditions are often linked to stress associated with persistent social stigma and discrimination. Integrated services provide the opportunity for patient-centred prevention, care and treatment for the multitude of issues. In addition, integrated services facilitate better communication and care. When integration is not possible, strong links among health services should be established and maintained.
8. Community empowerment:
Community Empowerment means empowering and supporting self help groups to address for themselves the structural constraints to health, human rights and well-being that they face, and improve their access to services to reduce the risk of acquiring HIV. Community empowerment is an essential approach that underlies all the interventions and programme components described in this tool, and is inseparable from them. Community participation and leadership in the design, implementation, monitoring and evaluation of programmes are also essential. Participation and leadership help to build trust with those whom programmes are intended to serve, make programmes more comprehensive and more responsive to needs and create more enabling environments for HIV prevention.
9. Three zero’s:
Key population groups should be empowered to plan activities that lead to zero deaths by HIV; zero stigma; and zero discrimination. This will help align downstream plans with what is taking placing at the upstream.
Sexuality, Gender, Orientation and health:
These themes are recurring and affect the way key populations interact or seek social services in situations that are stigmatizing and discriminatory. Key populations should be empowered to examine and articulate the sexuality, gender, orientation and health needs with the goal for quality life and wellness.
10. Empowering Leaders In Mainstreaming Skills In A Two Day Workshop
By the end of two days, participants will have:
been introduced to human rights framing their inclusion and self determination
been introduced to the concepts around acceptability of services as a key aspect of effectiveness
been introduced to health literacy
been introduced to community empowerment
been introduced to the three zero’s
been introduced to Sexuality, Gender, Orientation and health
been able to plan around all integration requirements
11. Human rights:
The action points:
i. Identify protection parameters of human rights for all members of each key population.
ii. Map out legislators and other government authorities should establish and enforce anti discrimination and protective laws, derived from international human-rights standards, in order to eliminate stigma, discrimination and violence faced by key population groups and to reduce their vulnerability to HIV.
iii. Identify various HIV & STI needs of the community.
iv. Identify access points to quality health care and provide information as a human right. It includes the right to appropriate quality health care without discrimination.
v. Seek out mechanisms to work with health-care providers and institutions. One of the best-practice to agree upon is serving beneficiaries based on the principles of medical ethics and the right to health. Health services should be accessible to all. HIV programmes and services can be effective only when they are acceptable and high quality and widely implemented. Poor quality and restricted access to services will limit the individual benefit and public-health impact of the recommendations contained in this guidance document.
vi. Seek out mechanisms to work with law enforcement. Access to justice is a major priority for key populations, due to high rates of contact with law enforcement services and the current illegality of their behaviours in many countries. Access to justice includes freedom from arbitrary arrest and detention, the right to a fair trial, freedom from torture and cruel, inhuman and degrading treatment and the right, including in prisons and other closed settings, to the highest attainable standard of health.
vii. The freedom from fear is an important pillar. The protection of human rights, including the rights to employment, housing and health care, for key populations it requires collaboration between healthcare and law-enforcement agencies, including those that manage prisons and other closed institutions. Detainment in closed settings should not impede the right to maintain dignity and health.
12. Acceptability of services is a key aspect of effectiveness:
The action points:
i. All interventions to reduce the burden of HIV must be respectful, acceptable, appropriate and affordable to recipients in order to enlist their participation and ensure their retention in care.
ii. Services delivery must often employ appropriate models of service delivery with expertise in HIV.
iii. There is a need to build service capacity on both fronts. Services that are acceptable are more likely to be used in a regular and timely way.
iv. Consultation with organizations led by and including community outreach workers in service delivery are effective ways to work towards this goal.
v. Mechanisms of regular and ongoing feedback from beneficiaries to service-providers will help inform and improve the acceptability of services.
13. Health literacy:
The action points:
i. Develop readily usable health and treatment literacy materials in understandable language.
ii. Provide opportunities for information to be available to influence decision-making on HIV risk behaviours and their health-seeking behaviour.
iii. Ensure health services regularly and routinely provide accurate health and treatment information. At the same time health services should strengthen providers’ ability to prevent and to Integrate service provision: Multiple co-morbidities and poor social situations for example, HIV, viral hepatitis, tuberculosis, other infectious diseases and mental health conditions are often linked to stress associated with persistent social stigma and discrimination.
iv. Integrate services to provide the opportunity for patient-centred prevention, care and treatment for the multitude of issues. In addition, integrated services facilitate better communication and care. When integration is not possible, strong links among health services should be established and maintained.
14. Community empowerment:
The action points:
i. Engage participants in a community empowerment session where they are supported to form enduring self help groups to address for themselves the structural constraints to health, human rights and well-being that they face, and improve their access to services to reduce the risk of acquiring HIV.
ii. Make sure that community empowerment is planned and an essential approach that underlies all the objectives.
iii. Community participation and leadership in the design, implementation, monitoring and evaluation of programmes are also essential. Participation and leadership help to build trust with those whom programmes are intended to serve, make programmes more comprehensive and more responsive to needs and create more enabling environments for HIV prevention.
Three zero’s:
The action points:
i. Key population groups should be empowered to plan activities that lead to zero deaths by HIV; zero stigma; and zero discrimination.
ii. Align downstream plans with what is taking placing at the upstream level. This is the only way realistic plans are made.
15. Sexuality, Gender, Orientation and health:
The action points:
i. Point out how these themes are recurring and affect the way key populations interact or seek social services in situations that are stigmatizing and discriminatory.
ii. Key populations should be empowered to examine and articulate the sexuality, gender, orientation and health needs with the goal for quality life and wellness.
iii. Combine all action points into activity lists and identify required resources.
16. Empowering Leaders In Applying the SOGI Spectra
Sexuality, Orientation, Gender and Identity Spectra :
To make it easy, we use cue thematic approaches which are explored using Brainstorming, Question and Answer Sessions:
- The biology of Gender Identity: Emerging understandings
- Identifying, examining and articulating sexuality, gender, orientation and health needs with the goal for quality life and wellness
- Generating activity lists and identifying required resources
- Gender fluidity
- Toxic Femininity
- Toxic masculinity
- Gender expansiveness
- A gender expansive child
- Parenting a gender expansive child
- SOGI Stakeholder Mapping
- SOGI Social support Social Mapping
- Visibility and Behind The Scene Experiences
- Supporting Visibility
- Repression of SOGI by Policy, Programing, Media, Religions and Institutions
- Role Modelling
- Literature and Knowledge development
- Use of research to support arguments
- Fertility issues for youth: Puberty blockers, hormones and making decisions support structures
- Ridicule, stigma and discrimination at different contexts including homes
- Being seen, safe and supported at different spaces including homes
- The different frames: Living with HIV, ADHD and Gender Spectrum
- Visibility through talent, music, dance and drama
- Talking about sex with LGBTIQQ and Gender Expansive Pre-Teens
- Talking about sex with LGBTIQQ and Gender Expansive Teens
- Teaching Negotiated Sexual Agreements-NSA
- Building Gender resilience and Pride using multicultural tools
- Non-binary Gender Identity Development Testimonies from Young Adults
- Effective story telling as a means of advocating
- Gender Inclusive Spaces
- Parents or relatives of LGBTIQQ and how they negotiate homophobia
- Knowing one’s rights when interacting with Police, Prison and Immigration Authorities
- Gender Dysphoria
- Puberty blocker basics
- Cross-hormone basics
- Connecting online
- Seeing body congruence
- Surgical options
- Successful surgical experiences
- New normal
- Normativity fluidity
- Outside of the Gender Binary: Defining and Caring for Non-Binary Identified Youth
- Exploring Gender in familiar contexts
- Legal approaches to Gender Congruence
- Embracing one’s faith and supporting spirituality
- Uncovering one’s own SOGI understanding to help support others
- Advocating for comprehensive and LGBTIQQ Affirmative Sex Education
- Living Gender through Cultural contexts
- Understanding pathways to personal Gender through stories, films, texts and role plays
- Sharing stories of grief to create space for the joy of change
- When communities don’t welcome LGBTIQQ; Counselling and Legal implications
17. Expected Outputs
We hope to achieve the following:
- We shall have a planned action matrix show-casing the areas on which we need to concentrate our efforts.
- We shall build a critical number of trainees who are able to deeply analyze the different life pathways as they move toward self-actualization
- There will be a body of works from Uganda with particular themes around SOGI
- We hope to disseminate findings and experiences with other organizations
- We shall develop community resilience resources which can leverage translation of knowledge into applicable everyday life experiences.
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