MODULE FIVE

1. MODULE FIVE COMMUNITY MOBILIZATION AND RECORD KEEPING

2. LEARNING OBJECTIVES Upon completion of this module, the participant will be able to: • Identify types of support needed in PMTCT • List types of support systems existing in the community • Describe PMTCT interventions that can be undertaken at community level • Describe the goal of PMTCT communication strategy • Discuss the importance of traditional practices • Discuss the importance of male involvement in PMTCT

3. LEARNING OBJECTIVES CONT.. • Define and describe stigma and discrimination • Discuss how stigma can be reduced within PMTCT programs • Understand the role of lay workers in record-keeping and monitoring PMTCT programs, at the community level • Demonstrate use of community, and clinic record keeping /monitoring tools to collect appropriate information for monitoring and evaluation.

4. Community mobilisation • Community mobilisation is the process of supporting members of a community to clarify and address their problems needs and aspirations collectively. The people themselves understand the problem and its cause and are involved in responding to their own problems with the help of experts. Community mobilisation encourages participation and empowerment through this process, community members use their resources to achieve a common goal.

5. Types of support • Nutritional support for the mother and her baby • Psychosocial support for the mother and family • Follow up of mothers and their HIV exposed infant

6. Community Organisations and Support Systems The following may be organised in the communities in your catchments area. • Neighbourhood Health Committee • Village Development Committee • WASHE Committee • Traditional leaders, chiefs, indunas • Religious groups • NGOs or CBOs • Mothers’ support groups; Breastfeeding support groups • PLHA groups • Peer educators, community theatre groups • School groups, HIV/AIDS clubs

7. Interventions communities can implement which will help to reduce MTCT • Promote individual or group attitudinal change toward being more supportive of people living with HIV/AIDS (PLHA), to be less stigmatising and non-discriminatory • Promote healthy risk reduction behaviours, such as the “ABCs” • “A” for Abstaining from sex • “B” for Being faithful to one uninfected partner • “C” for Consistent and Correct Condom use.

8. interventions communities can implement which will help to reduce MTCT • Promote family planning to prevent unintended pregnancies • Promote Counselling and Testing (CT, also known as VCT) • Establish mothers’ support groups • Establish fathers’ support groups • Set up emergency financing and transport schemes

9. The role of a community Health worker • Go through the table in the reference manual with the participants

10. PMTCT Communication Goal: • Empower individuals, families, and communities to make informed choices to prevent HIV transmission, prevent unintended pregnancies, use PMTCT services, and access care and support through effective BCC strategies.

11. The importance of Male Involvement in PMTCT • There is need for advocacy for male involvement at community level because traditionally men are decision makers and bread winners. • Male involvement is crucial in the fight against HIV, as well as in family planning, maternal health, and child care. • Traditionally, men usually make decisions on important issues such as whether to use a condom or not, when or whether to seek health care, infant feeding and the number of children in the family and when to have them.

12. Traditional Practices and Beliefs • Health workers and Lay Counsellors should work together with their communities to identify, understand and address existing traditional practices and beliefs that could impact mother-to-child transmission of HIV in the community, or uptake of services provided. • There may be harmful traditional practices that increase HIV transmission, stigma and discrimination. • There may also be traditional practices that could be utilized to promote or encourage good practices and behaviours (Health Centres should work together with the NHCs and other community groups to address these practices at the community level.

13. What is discrimination? • Discrimination is the treatment of an individual or group with partiality or prejudice. Discrimination is often defined in terms of human rights and entitlements in various spheres, including healthcare, employment, the legal system, social welfare, and reproductive and family life.

14. Stigmatisation and discrimination • Stigmatisation reflects an attitude, but discrimination is an act or behaviour. Discrimination is a way of expressing, either on purpose or unknowingly, stigmatising thoughts. • Stigmatised individuals may suffer discrimination and human rights violations. • Stigmatising thoughts can lead a person to act or behave in a way that denies services or entitlements to another person.

15. Stigmatisation and discriminationcont… • Attitudes and actions are stigmatising. • Choice of language may express stigma. • Stigma can exist even in caring environments

16. Effects of stigma • Stigma may reduce an individual's choices in healthcare and family/social life. • Stigma may limit access to measures that can be taken to maintain health and quality of life. • HIV/AIDS-related stigma fuels new HIV infections. • Stigma and discrimination can lead to social isolation. • Stigma and discrimination can limit access to services.

17. Effects of stigma cont… • Stigma may stop people from getting tested for the infection • Stigma may make people less likely to acknowledge their risk of infection. • Stigma may discourage those who are HIV-infected from discussing their HIV status with their sex partners and/or those with whom they share needles. • Stigma may deter PLWHA from adopting risk-reduction practices that may label them as HIV-infected. • Stigma makes disclosure more difficult.

18. Addressing Stigma and PMTCT services • Increase knowledge about HIV • Increase awareness of issues faced by PLWHA • Increase awareness of domestic violence faced by newly diagnosed women • Communicate, through community leaders, that violence against women is inappropriate, immoral, and/or illegal • Encourage leaders to make their workplaces HIV-friendly

19. Addressing Stigma and PMTCT services • Promote PMTCT activities as an integral part of healthcare and HIV/AIDS prevention and treatment • Educate the community about PMTCT interventions (including ARV prophylaxis and safer infant-feeding practices), stressing the importance of community and family support in PMTCT initiatives • Increase referrals to and from PMTCT services • Secure the involvement of community members and PLWHA in organising, developing, and delivering HIV education, prevention, and support programmes

20. Community awareness of PMTCT interventions • Increase community awareness of PMTCT interventions to help men and women recognise their roles and responsibilities in protecting themselves and their families against HIV infection.

21. Community partnerships • Build partnerships with churches, schools, and social or civic organisations when developing PMTCT services. Promoting PMTCT services in community organisations will enhance sustainability and will help develop a broad base of support for the PMTCT initiative.

22. Addressing Stigma Through Greater Involvement of PLWHA • Help PLWHA gain and practise life skills in communication, negotiation, conflict resolution, and decision-making, which empowers them to challenge HIV/AIDS-related stigma and discrimination • Encourage PLWHA to join together to challenge stigma and discrimination. • Promote the active involvement of PLWHA in national and local activities to foster positive perceptions of people living with HIV • Support the establishment of PLWHA organisations and networks, including those that enable people to demand recognition and defend their rights

23. Characteristics of a community mobilized for HIV/AIDS activities • members are aware, in a detailed and realistic manner, of their individual and collective vulnerability to HIV/AIDS, and of the risk of MTCT of HIV/AIDS • members are motivated to do something about this vulnerability and risk • members have practical knowledge of the different options they can take to reduce their vulnerability and risk

24. Characteristics of a community mobilized for HIV/AIDS activities • members take action within their capability, applying their own strength and investing their own resources, including money labour, materials or whatever else they have to contribute • members participate in deciding what actions to take, evaluate the results and take responsibility for both successes and failures • members seek outside assistance and cooperation when needed.

25. Key indicators: • Knowledge level- the majority or all members are aware, in detail and in a realistic way, of their individual and collective vulnerability to HIV/AIDS and the risk of MTCT. They have practical knowledge of the different options they can take to reduce their vulnerability or risk. • Motivation to intervene- members take action within their capacity, applying their own strengths and investing their own resources, including labour, money, materials, time and whatever else they can contribute. • Empowerment level- members participate in decision making on what action to take, evaluate their resultsand take responsibility for failure. The community seeks outside assistance and cooperation when it is needed

26. The following important assumptions are made in mobilising communities • Communities have knowledge, which can be tapped and used in assessment and in taking appropriate actions. • Communities have a right to expression and to question information and ideas • Communities have resources- human, materials and financial • With HIV/AIDS, a community must be taken through a process of assessing the situation and factors contributing to rapid increase and it must participate in identifying solutions, planning and implementing interventions, and monitoring response.

27. RECORD KEEPING

28. Record Keeping - PMTCT • For the success of the PMTCT program, as with any health program, it is critical that the necessary commodities be routinely available. In addition, a functional and reliable record keeping, monitoring and reporting system must be in place.

29. Facility Indicators • Are we reaching our target audience? • Can we provide services (e.g., do we have the equipment, the staff, the drugs)? • Do we provide quality services, (e.g., do our services meet MOH standards)? • Are we meeting the needs of our clients? • Are we referring appropriately? • Are our patients getting better care? • Are we recording reduced incidence of HIV in children born to HIV+ mothers?

30. Rules to keep data good and useful • Understand the data. Make sure before you record information that you know what is being asked for. • Record the data every time. • Record all the data. • Record the data in the same way every time. Use the same definitions, the same rules, and the same tests for reporting the same piece of information over time. This is not always possible, particularly when tests change and definitions change as we learn more about treatment and as we get new technologies. When it is not possible to record the data in the same way, a note should be made describing the change.

31. Registers • VCT/PMTCT Counselling Register. This captures essential counselling and testing data for all clients. • Antenatal Register and Tally Sheet. This is kept in the facility and filled out for each antenatal patient, to record essential information about the patient’s condition and services provided, and an HMIS tally sheet to easily record cumulative information on key indicators for routine reporting.

32. Registers • Delivery Register and Tally Sheet. This is kept in the facility and filled out for each delivery patient, to record essential information about the patient’s condition and services provided, and a tally sheet to easily record cumulative information on key indicators for routine reporting. • Family Planning Register and Tally Sheet. This is kept in the facility and filled out for each client who receives FP services, and an HMIS tally sheet to easily record cumulative information on key indicators for routine reporting. • Under-5 Register. This is kept in the facility to record vital information on the care of infants and children under five years old.

33. Client Cards • Mother’s Card. This is a client-owned record of findings and care received during her pregnancy, which the woman carries with her and presents each time she comes for services at any facility. • Family Planning Card. This is a client-owned record for family planning, which the client carries with her/him and presents each time s/he comes for services at any facility for FP services or follow-up. • Under-5 Card. This is a client-owned record of findings and care received for infants and children under five years old, which the client’s parent or guardian carries and presents each time he/she brings the child for services at any facility.

34. Monthly community PMTCT/VCT integrated Reporting Form • . Collect and report data from the community.

35. SUMMARY • Community support for and involvement in PMTCT programs can determine whether a program is successful or not. • Lack of adequate community involvement and support can prevent people from accessing services or adhering to health worker recommendations, while strong community support can increase participation and provide crucial additional support for quality services which go beyond the capacity of health facilities to deliver.