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Nov 30
World AIDS Day 2022: Case management, expert patients and the meaning of partnership

by: Joslyn Walker, Ntombifuthi Shezi, Sanele Mvelase, Primrose Sithole, Hlengiwe Ngcobo, and Judith King

The SA SURE Pro project combines clinical interventions and peer mentorship to ensure inclusive and equitable access to HIV and TB care and treatment in public health facilities and in communities.

Partnering with the Department of Health (DoH), the Centers for Disease Control and Prevention (CDC), and the communities in which we live and work, the SA SURE Pro project is implemented in four districts in KwaZulu-Natal.

People living with or at risk of HIV and/or TB infection are central to all of the work we do. We strive to improve their experience of care by providing health education, support and treatment – but not as merely passive recipients of care.

For authentic parity in our care approach, we ensure that patients are actively engaged in their own journey to health and wellbeing. The healthcare worker and health system do not stand alone, but function productively only when strongly affiliated with the patient, whose unique experiential knowledge is drawn from individual circumstances, preferences and values.

In order to best serve the needs of people living with HIV (PLHIV) and TB, HST developed and implements the Case Management Model, which ‒ as a patient-focused modality ‒ allows for adjustment to suit the context and needs of the local population, environment, and leadership structures.

Case management is designed to put the patient first ‒ to regard the patient as a whole and competent person, and not as a 'package' of disease symptoms, or an epidemiological statistic. The success of this model relies on collaboration between the patient and healthcare worker, each on an equal footing. It entails the patient developing a trust in a Case Manager for psychosocial and clinical support, and the Case Manager being guided by the patient when monitoring patient's clinical progress towards viral suppression or being cured of TB. 

As a vital method for patient-centred care, case management brings improvements to the whole system by improving patients' waiting times and information systems, enabling regular and convenient appointments, and customising service delivery to individual needs.

Case management also integrates the HIV and TB programmes directly into Primary Health Care services, making the treatment pathways more accessible, more equitable and less stigmatising.

Although case-managing a patient is a clinical intervention, HST prioritises the involvement of patients in various initiatives to strengthen this care approach. We collaborate with the PLHIV sector to gain a deeper understanding of patients' experiences of care and their capacity for self-management. To break down some of the barriers to care, we employ PLHIV as expert patients – essential members of the healthcare team who can help those newly diagnosed with HIV to deal with their health status, and to walk the journey with them from a position of knowledge and empathy.

Collaborating with the District AIDS Council and PLHIV sector  

The District AIDS Councils are crucial platforms for partnership across sectors. In these fora, PLHIV, DoH officials, representatives of government departments, political and traditional leaders, non-government actors and other stakeholders can engage to improve health outcomes for the people of the district.

In eThekwini, the DAC is chaired by the city's Mayor, Councillor Mxolisi Kaunda. HST has assigned Nurse Clinician Amanda Mkhize as a technical advisor to the DAC, and together with the SA SURE Project Manager, Community Co-ordinator and other technical leads, we are working through the Mayor's agency in the DAC towards an AIDS-free generation in the city.

DAC Co-ordinator Nthabiseng Malakoane describes this collaborative approach: "Together, across eThekwini, the DAC and HST are implementing programmes for health promotion, behavioural change and our 'Welcome back' campaign. We work closely with the Chairperson and Secretary of the PLHIV sector, and have brought in the CINDI Youth Living with HIV to promote adherence to treatment."

Mayor Kaunda is a passionate advocate for HIV prevention and for equitable access to treatment for all PLHIV. He champions specific activities to address issues for communities, such as the MINA men's health campaign, by joining in men's gatherings to discuss the key issues affecting their lives and how the youth of eThekwini can be supported.

Councillor Mxolisi Kaunda, Mayor of eThekwini and DAC Chairperson, launches the MINA campaign for men’s health

The MINA campaign is a targeted, insights-based and data-informed brand that speaks directly to men on health and wellbeing generally, and on HIV care and treatment specifically. Having the Mayor as a MINA champion in eThekwini shows men that their health is truly in their hands.

In the lead-up to 16 Days of Activism for No Violence Against Women and Children, the Mayor hosted a breakfast session with PLHIV, where issues affecting this sector were discussed at length. Children born with HIV and living openly shared their testimonies and their willingness to support other children towards accepting their status. The key message for the day was voiced by the PLHIV and youth advocates: "We are where we are today through support groups, and would like to see our brothers and sisters benefitting as we have."

Ntokozo, a child living with HIV, had written a book on her experiences that she shared with the Mayor; she affirmed that the peer mentoring approach is the most effective route for achieving viral suppression.

HST's Sr Mkhize is making this wish a reality. Through her work in the DAC, and teaming up with a Lay Counsellor from HST's Unfinished Business project (our other flagship programme which works with children and adolescents), she has set up support groups in the Inanda area.

Joining Mayor Kaunda to welcome HST's Sr Amanda Mkhize as the DAC technical advisor are (from left) the Civil Society Forum Chairperson Siya Nzimande, HST's HAST Co-ordinator Lucia Myeza, and DAC Co-ordinator Ms Nthabiseng Malakoane.

Peer mentorship

The role of the Peer Mentor in Zululand District is to provide peer education and psychosocial support to adolescent girls and young women (AGYW) aged between15 and 24 years, as well as their partners, parents and families. Peer Mentors are HIV-positive young women who have voluntarily declared their HIV status so that they can support other young women; their goal in this work is to help in reducing new HIV infections, illness and death among youth, and promoting health-seeking behaviours through uptake of sexual, reproductive, maternal and child health services.

The Peer Mentors map the community services available in the catchment area, and visit households. To create an enabling environment for young women to engage with health services, they set up and facilitate Youth Clubs and parenting sessions in the community, as well as Youth Corners and Young Mothers' Clubs at facilities, along with referrals and linkage to healthcare and social services.

This programme has reduced HIV-related stigma and discrimination in facilities, especially for young women whose reluctance to disclose their status prevents their access to healthcare. The love and support offered by Peer Mentors boosts the self-esteem of young mothers living with HIV, and has increased the number of clients who are willing to disclose their status to their partners or children, as they find it easier to interact with someone who has been on the same journey. mothers breastfeeding week at KaHhemulana Clinic

Qobile Zenele Buthelezi

Peer mentor, KaHhemulana Clinic

I wanted to be a Peer Mentor because I understand very well how challenging it is being a mother with such experiences in life, and being a Social Worker by a profession, I will help them conquer their personal issues. It also helps me to improve my skills because I like to work with people. I know that people are unique and it's easy to understand their behaviour in a non-judgemental way.

Peer mentorship improves the quality of health services to PLHIV because I teach them about me as I am HIV-positive, and that makes them feel free to share their experiences with me because we are at the same threshold of health status and we can listen to each other.

It makes me feel so happy to be the one who is responsible in my clinic and as a member of the community. Those who are on treatment are responding so well to their medication. Peer mentoring decreases the number of patients with interrupted treatment because I teach them the importance of taking medication on time, using condoms, and family planning. Patients who are orphaned, survivors of rape and abuse, poor and angry are able to verbalise their concerns to me, and I can refer them to Social Workers for additional support.

One teenager had declined to take treatment but after I counselled her, she enrolled in treatment. Patients who have missed appointments need my assistance and counselling and they are returned to treatment, as I go with the outreach team to trace them. 

Thandeka Mchunu

Peer mentor

I wanted to be a Peer Mentor because I am passionate about empowering adolescent girls and young women by giving them knowledge about services for mental health, STIs, gender-based violence, preventive interventions, nutritional counselling, and contraception.

Being a Peer Mentor makes me happy because I am helping AGYW with health services and improving their self-belief. I make sure I teach them about how to manage peer pressure via counselling and offer them life skills during Youth Zone sessions in the facility and during health talks.

Being a Peer Mentor improves the quality of health services for PLHIV, and counselling adolescent girls reduces the rate of teenage pregnancy.

I had a postnatal patient who is currently on antiretroviral therapy (ART), but she had interrupted treatment, was addicted to drugs due to an abusive relationship, and had dropped out of high school. Peer mentoring does not end at the facility. I had a one-on-one session with her after she was re-initiated and her file was referred to me as a Peer Mentor. After the initial, session I stayed in contact with her over the phone, offering to talk to her whenever she needed. She then opened up about her past struggles with her abusive partner and her battle with drug addiction. After continued sessions, she is now keeping up with clinic appointment dates and is virally suppressed. She has gone back to school and overcome her drug habit. She managed to stand up to her abusive partner and leave the relationship. In our last session, she revealed that it was the relationship she had built with me as someone to just listen and not judge her, that helped her. She is now advising others who are in a similar situation to seek help before it's too late.

Having a friendly face and an ear to listen to you in your time of distress helps. All of this was facilitated by the Peer Mentor Programme. 

Peer mentorship through the Coach Mpilo Programme is another means of reaching out to men living with HIV. This programme assigns men who are living openly with HIV as coaches for encouraging men to disclose their status and guiding them through the challenges of HIV diagnosis, adherence and treatment. It recognises that men fear their diagnosis, and while they want to be healthy, they do not always have the tools at their disposal to achieve this. Coach Mpilo is currently implemented by the SA SURE Pro project in uMgungundlovu and uThukela, where it is making a substantial difference in the way we engage men and is improving integration of HIV-positive male mentors into health service delivery. 

Nqobisizwe Ngubane

Peer Mentor – Coach Mpilo

​I wanted to be a coach because I want to help people to understand and know about their status, and to gain self-confidence as I have. I want to show people that and HIV diagnosis is not the end of the world. I inspire men to be survivors by taking their medication correctly. I give a step up on treatment adherence by empowering men with knowledge.

My name is Thobani Shabangu and I am 28 years old. My main reason for becoming a Coach was to try to eradicate the spread and stigma of HIV, and to educate and enlighten people in the community with emphasis on men about health education. What I enjoy most about my job is that I bring new hope to men who have lost all hope with their lives. I love seeing my players rise from the ground up, regaining their confidence and giving them a different and positive view of life and their health. 

My name is Thembalihle Cedrick Khumalo. I’m 36 years old and the reason I wanted to be a Coach is because I want to educate people, mostly males, about HIV and how positively you can live, and also how you should present yourself in a respectful manner in the community and be a responsible individual living with the virus. I live openly with my status and I am not afraid of disclosing. I am able to tell my story without fear, helping other people to open up and be comfortable with themselves. I tell them that living with HIV is not death sentence. The world is a beautiful and wonderful place to be in, so make every moment count. What I like most about my role in the men’s health programme is the gratitude shown by my players and the men I interact with, telling me that they now can see light at the end of a dark tunnel. 

I am Siyamukela Shange and am 40 years of age. I'm a Men’s Coach at Bergville Clinic. I wanted to be a Coach because I want to be a part of making a change in our country, and to help men who are living with HIV, by giving them hope and assuring them that being HIV- positive is not a death sentence but a condition that requires you to take care of yourself. And if you adhere to your treatment, you can live a normal life. I also want to help men who are HIV-negative to stay uninfected. I believe my strongest trait is my attention to detail, which has helped me tremendously as a Coach. As a man living with HIV, I find it easier to point out the challenges that my players are facing, and because of my observations it’s easier to find solutions. I see myself as an inspiration to men who are struggling with treatment adherence because when they see how healthy I am and how I live a normal life, they get inspired to adhere to their treatment. My message is: We are here for you in this HIV journey, you won't be alone. Start your treatment today.

My name is Justice Sithembiso Khanyile, and I am 41 years old. I wanted to change the lives of people living with HIV and give them the hope and encouragement before taking their treatment. l see myself playing a big role and providing ongoing guidance and support for their own personal experience of living with HIV, and above all, I see myself as an important tool for helping them to live a healthy life. 

My name is Zakhele Zwane, greetings. I am 35 years old. I wanted to be a Coach after I found out about my status in August this year. I was very shocked to hear about my status, but when I was asked about initiating treatment, I agreed immediately because I was thinking about my dream in life and the things I want to achieve. I love to be a Coach. It works for me and my community. As a man living with HIV, I always give hope to myself first. Without hope, I don’t think we will make it. So before leaving a client, I make sure he understands me very well, in order to make him gain strength through hope. It is so exciting to see a player recovered from illness and come around and ask for you by name, just so he can show you that he is getting better.

I am Ndumiso Ndlovu, aged 30 years. Men's health is important, but men find it is not easy to attend, as they do not want to attend clinics like a woman. I wanted to be a Coach so that I can encourage all men to go to the clinic. I tell them that I'm living with HIV but I'm still the same. They can live their life the way they want to if they do things right. Adherence is important. This pill is like a spring: if you put something which is heavy on it, it goes down. Once you remove that thing, it rises up again. You will be in danger. The thing I like about being a Coach is that I see many men coming back to the clinic, looking for me to help them. I see them coming to do HIV testing, consulting, others coming to collect their medications, without any shame. I see myself as a life-saver. 

My name is Mntungwa Derrick Khumalo. I am an example of how being HIV-positive is not the end of the world. Always I inspire men by telling them about my status and the way I am free about it and also how acceptance makes the treatment work on your system. This helps our players to be honest to us and open to our friendship with them. What I like the most about my programme is that players now are my friends. Always they want my help every time they arrive in our facility; the only thing they ask is for me, and that makes me feel great because I love to help people and to know people, and also to see people happy, knowing that I am the reason for that. 

My name is Sanele Gwala and I am 32 years old. The reason I wanted to be a Coach is because we as men are not aware of the importance of our health. The strength that I bring to case management as a man living with HIV is unique. Every time that I speak with my players, they understand me very well because I always start by referring to myself first, which makes it easier for them to receive the information because no one is judging and we are living the same life. We are sharing in this because as much as I am helping them, they are helping me as well. I see myself as an inspiration to men who are struggling with adherence because we share a lot and come up with many different strategies. Every player is facing different challenges when it comes to adherence. Most of my players have a problem with alcohol so that they forget to take their medication, so we find the most suitable time for them to take their medication. I would like to say to men and women who already know their status but are not yet taking their medication that sometimes it is not about us but the next person that we care about, and giving the next generation the chance for a better life and future.
Coach Zanele Zwane reaches out to guide and support his player.
​Thembelihle Cedric Khumalo gathers his players for a coaching session.

Coaches run group sessions for their players.
​Coaches speak to their players on their level
​Siyamukela Shange demonstrates viral load with the ‘B-OK’ bottles of beads.
​Justice Sithembiso Khanyile is an advocate for men’s health. By sharing his experiences, he becomes a tool in their lives
​Ndumiso Ndlovu showing men that even though he has HIV, he is still the same strong and proud man he always was
​The B-OK bottles are a great aid for explaining how the virus and medication interact
​Coach Mntungwa Khumalo using the B-OK bottles for adherence classes.

Nhlakanipho Kunene

Peer Mentor – Coach Mpilo

​Since my childhood, I've longed to work as a Health Worker. I saw the stats for the level of health services rendered and the outcomes of people needing care. For various reasons, there are fewer men seeking health care. Given the opportunity to change that, I took it because I understand how it feels like to be a man living with HIV. I know what advice and help are needed by men, whether HIV-positive or HIV-negative. I believe I am living proof that even if I'm HIV-positive, I can still live a healthy life, by first accepting my status, asking for help if I need it, and reminding myself that by taking care of others and taking my treatment I'm not only taking care of myself, I'm also protecting others from being infected. I tell men who are not on treatment the history of how hectic it was when the ART programme started; I take them through the improvements in medication, and about the advantages and disadvantages of taking or not taking treatment.

Whether as Coaches, Peer Mentors, Case Managers or a Managers working with the district to develop strategies for more inclusive health services, we are all working towards more equitable and integrated health systems to make treatment more accessible for and more widespread among people living with HIV. Together, we can do more. 


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