One of the major problems in community health worker outreach programs are people who do not follow up (called “loss to follow up”) and tracking defaulters. Because I work with community health workers who deal with HIV pregnant women and exposed and HIV positive children, my examples will be derived from the things I’ve witnessed and learned specifically related to HIV, which often carries different weight than community health workers who deal with many other illnesses prevalent in communities.
In community health work around HIV positive pregnant mothers and children, a community health worker follows the pregnant woman or mother and child, checks up on them at home about once a month, counts their pills to make sure they have been adherent, accompanies them to check up appointments at the clinic, and provides a form of support and information. After around 6 months, you can generally tell who will be adherent and who won’t be.
A lot the time, the people who have been constantly taking their pills, going to regularly scheduled check ups at the clinics and are generally adherent to what they are supposed to do for the first 6 months of antiretroviral therapy (ART), will continue to do what they need to do to keep themselves healthy. So while a community health worker is a nice support, the patient is looking out for his/her own health outcomes and the health outcomes of their children.
The same cannot be said about people who are loss to follow up and defaulters, who usually stop showing up to clinic appointments, avoid their community health worker and have not been taking their pills. They are the people who really do need the community health workers, but many times, they opt out of the program because they do not want to be followed. There are many reasons for this, ranging from their fear that having a community health worker show up might be a red flag in the community and give away their HIV status, to that they don’t think they need to get their children treatment because they aren’t noticeably sick. So, how do you get people who don’t want to participate in a program to participate? It’s a difficult question, one riddled with human rights issues, such as freedom of choice, but also public health issues, such as trying to keep people healthy and stop the transmission to more people. (Which is talked about in the new book on Smallpox and mandating vaccinations in the USA, called Pox).
As I was thinking about this, an interesting idea occurred to me. There is currently an organization called mothers2mothers that takes women who have gone through their program of prevention of mother to child transmission, consisting or workshops, accountability meetings, and support groups until they give birth and have (hopefully) and HIV negative baby, and trains them to be mentors for other mothers currently going through the program. They usually meet in groups at a health center or clinic.
Now, what if we took this idea and added a program similar to the Alcoholics Anonymous (AA) program to it. Not the 12-step part, but the sponsor part. In AA, they have regular meetings with veterans and new members (like mothers2mohters), but they also have an assigned one-on-one relationship with a “sponsor”. A new person to the program is paired up with a veteran who is there to be their sponsor, offering guidance and support, there for them to call when they feel they are going to fall off the wagon and there for them to be a friend and a mentor. Many people describe this relationship as meaningful and life changing friendship that goes far beyond the bounds of just the sponsor relationship. This is a person who knows what you are going through and can be a guide, but is also just there to be a good influence and a good friend.
What if we transposed this idea onto HIV positive defaulter monitoring approaches? It is a lot less intimidating to just have a woman from your community befriending you and supporting you than a community health worker coming around to check up on you (sort of like the difference between an AA sponsor and a social worker). For people who have a high likelihood of loss to follow up or a history of defaulting, this could be a good way to keep eyes and ears on them. Community health workers are already crazy overworked, so keeping good track on defaulters is really hard. They may only be able to go out to visit them once a month depending on their workload, so having someone chosen from that persons own community to have a one-to-one relationship with them could allow the extra support needed to make sure that the people most prone to defaulting do not default.
Of course there are obvious problems with this model, the first being that in AA, people choose to go when they are ready, and if they are not ready and are forced to go, many times it does not go well and they fall off the wagon because they are psychologically not in the place to help themselves. So, you must ask, won’t the same happen with these women who are given a “sponsor” before they are ready.
The problem is that if a person starts ART and then decides to stop, many times their body develops immunity to the first line drugs and if they finally do get to a point when they want to get treatment, many times they need to be put on second line medication which has more side effects, and is more complicated to take. So, if someone starts and we are worried about defaulting, it is essential that we do whatever we can to keep them on.
And of course there is the danger of the sponsors defaulting. People are not always reliable, particularly when they aren’t formally trained as community health workers and especially if they aren’t being compensated. So, what keeps them continuing to be a sponsor for the new mother? I’m not sure yet. Maybe an investment in the program because they went through it and their child came out HIV negative? Are there other incentives for them to do this other than out of the goodness of their hearts?
I would love to hear your thoughts on how a model like this could be applied, if at all, or if you have ideas for other models or know of work like this going on and what the results have been.