Life in the Field

The story of precious eight year old Sbonelo (his name has been changed) is one demonstrating the challenges and successes experienced by Home-Based Care volunteers.

We went on our first home visit with Sbongile to see her patient Sbonelo was June 2007. At that point, we found his mother a shining example for others: HIV positive, but healthy and on ARVs for over a year, with a healthy week-old baby. She had taken nevarapine to prevent transmission of her disease to her baby girl.

Sbonelo, in grade 2, and also HIV+ wasn’t doing as well – his hair was badly thinning and he had bad oral thrush and sores as well as a light fever. They had started him in the process for ARV treatment, but had run short of funds to continue. We gave money for transport to the clinic, and told Sbonelo’s mother and gogo (grandmother) to urgently fetch his CD4 results, the indicator of his immune system strength and requirement for initiation of ARV treatment. As we had suspected, his results indicated that he needed to start treatment, so we wrote a referral letter to the ARV clinic at the hospital explaining that the mother had already taken the required ARV adherence training, and so her son, Sbonelo could start ARVs straight away. (Without some intervention, seemingly simple cases like this can face difficulty and delay at the hospital and/or clinic.)

With the CD4 results and our referral letter in hand, more transport money assistance in their pocket, Sbonelo and his mother left for Estcourt Hospital where Sbonelo received his first dose of ARV treatment that he’s been taking ever since. His smile brightened our day when we visited the other day: he’s doing VERY well on his treatment, the oral sores gone and shine back in his eyes.

But that’s where the good news of our last visit (March 2008) stopped. Sbonelo’s mother had abandoned him and his baby sister (now 9 months) to their gogo’s care while she went off to get married to a neighbor guy. Even worse, she didn’t just leave her children behind, but also her ARVs. This treatment for her HIV is a sensitive one, whereby a meagre 5% default rate can lead to drug resistance. The mother’s defaulting on her ARVs is a serious matter, as is the fact that Sbonelo was left to manage his own ARV treatment, without his gogo knowing how to give him his triple-drug cocktail. Xoli went through the pills with him, gogo listening on, and were impressed how much an eight year old child could remember about his pills. But unfortunately, that wasn’t good enough, for he wasn’t taking all the pills, all six different types, 100% correctly. To make matters worse, Sbonelo’s mother had left with her cell phone, the only way they had of checking the time to ensure he took the pills on time. In addition to taking the correct pills in the correct way, ARVs require 12 hour intervals in between each dose, making careful adherence much more crucial.

We closed up the visit by giving the gogo a referral letter and money to get ARV adherence at the clinic for two days in the following two weeks. We also gave a phone call to Sbonelo’s mother inquiring about her ARVs, about the wellbeing of Sbonelo and her 9 month old, and referring her to the local VCT counsellor to help her work through all the issues surrounding her HIV status. Two days later, Sbongile, Sbonelo’s HBC volunteer brought them a small clock we bought to help with their adherence. Things for Sbonelo’s health are looking up, and we have referred Sbonelo’s mother to an excellent VCT counsellor to ‘empower her’ about the importance of making her health, and her treatment adherence.

General Thembalethu Updates

• Registration as an NPO: We are just weeks away from formal approval as a Non-Profit Organization in South Africa. Our documents have been sent off to the appropriate government office, and we will soon be officially “Thembalethu Care Organization,” Lord willing!
• Drop-In Centre Plans Underway: Exciting new plans are underway to coordinate an Amangwe community drop-in centre in collaboration with a local business man, Thembalethu and a recently re-emerged local organization. The precise details of the drop-in centre are still being ironed out, but initial discussions include implementing the following: a feeding scheme for orphaned and vulnerable children (OVC) and other indigent people as well as satellite feeding schemes in more remote areas; Voluntary Counselling and Testing (VCT) for HIV, and potentially a municipal clinic.
• Maize Meal Distributed from Winterton Farmers to Emangweni (Loskop) Orphans: Thanks to a surplus of mealie meal donated to the local inter-church organization Matthew 25, we started this month distributing big bags of mealie meal to orphan-headed households and extremely vulnerable children. We gave out fourteen bags of mealie to fourteen families, the worst cases we have found, as there are SO many orphans in the Amangwe community that are in great need. As funds are available, we will supplement this with beans, fruit, soya mince, and other staples. We are working towards improvements in social welfare’s service delivery as well as developments in the drop-in centre mentioned above to bring broader assistance to these kids in need.
• Nurse Volunteer Helping Out: We now have a volunteer nurse from Winterton Methodist (Jenny Braithwaite) who comes out with us every couple of weeks on home visits to patients. It’s a great help to have her nursing expertise, experience and way with people as we reach out to sick patients in their homes. Thanks, Jenny!
• Regular HBC Home Visits: We are just one HBC short of completing our goal of monitoring each and every one of our home-based care volunteers, many of these new carers over the past couple months. Monitoring includes meeting their patients and checking their work with them. In doing so, I can’t help but be wonderfully encouraged by all the love, care and hours that they put into assisting their sick neighbors.
• New Forms to Track HBC Patients Better: We have just completed simplifying our patient intake and monitoring forms, as well as training the HBC in them. The tracking forms help us keep track of our over 100 patients, enabling us to monitor their health status and activism, as well as being able to submit reports to the local Clinic. Because the average grade completed by our HBC was grade 7, we exchanged text for pictures, and streamlined the patient data that we really wanted to collect. We have collected the first round of forms, but have yet to get full feedback about the changes we made; at the time of training there was a lot of positive sentiment.