Since I wrote last describing what my typical week looks like, its not a surprise that thing have changed dramatically since then. Since October, I’ve been imagining the start of a project that is related to the support groups formed through the health centers and hospitals with the intention of easing many of the burdens, and lifting some of the most common obstacles that often stand in the way of people living with HIV & AIDS (PLWHA) and their adherence to anti-retroviral treatment (TARV). With the encouragement and facilitation of health center staff, PLWHA who are living in proximity to others who frequent the same health center and who live in the same neighborhood are encouraged to form groups of at least 2 and up to 6 persons, with the intention of forming an ongoing group of social and logistical support. Understanding that extreme poverty is one of the most significant reasons stated by PLWHA for their non-compliance to TARV treatment – because they simply cannot make it to the health center to pick up their medications – GAAC groups are meant to alleviate some of the obstacles experienced by many on antiretroviral treatment, to make adherence to treatment less of a challenge.
Groups to Support Community Accession, known as GAAC groups, maintain a structure and process which includes a rotating medication pick up each month by a group member, so that members are not responsible for picking up their medications every month, thereby relieving them of the burden of payment for transportation and the cost of lost work/school days. We were introduced to this initiative, developed on the national level, managed at the provincial, and implemented at the local level, during training when we first arrived in Moçambique. A representative came to speak with us to share the mission and vision of GAAC support as it has been envisioned at the macro-level, including many successes that have come from the initiative, leading to a plan to increase the numbers of GAAC groups and PLWHA participating in the process.
The idea of GAAC groups, creating groups of family and/or community members who are seropositive, on treatment, and who are at least marginally accepting of others knowing their status, has the potential to offer a number of benefits to members of groups in terms of logistical and resporce support to remain adherent to antiretroviral treatment. On these terms, many groups have found relief through the rotating responsibity of medication pick-up, particularly in those groups that have managed to maintain a large number (6) participating members. At (6), a group member would not have to visit the hospital to collect the group’s medication more than 2 times per year. For families who are surviving on very little in terms of tangible resources to meet basic needs, this support positively impacts the entire family household – in addition to the individual family/community member.
Regardless of the level at which it has been developed, every initiative/intervention has its pros and its drawbacks. From the beginning, my concern for the mental and emotional support of GAAC members has been my main interest. For a year, during my social work graduate program, I worked with an agency in New York City which focuses on foster care and adoption services for children with “special” needs and chronic medical illnesses. One of the most important observations I made during the time I spent working with families there, was how challenging it is to provide needed support (mentally, physically, and emotionally) to a loved one who is managing a chronic illness – particularly when you have no formal training or education in how to provide such care. This agency had the resources to work with families to learn to recognize the strengths and needs of their loved ones, and was able to offer education to family members so that they might provide better support and care to their loved ones. Although the ideal of the formation of GAAC groups is that they would alleviate logistical obstacles and burdens to HIV care, I was struggling to understand how the process actually offers the mental and emotional support between group members, if they themselves are struggling to care for themselves and possible family members who are also living with HIV.
In my first 6 months at site, during a more focused process of learning about the strengths, resources, and gaps in services that exist within my community, I learned that the hospital is meant to be making regular, monthly visits to these groups to see how they are doing and what support they might need from the hospital and its staff. From GAAC group members, staff at the hospital, and others in the community, it seems that the hospital hasn’t been able to maintain these visits due to their own challenges with resources and other administrative expectations and requirements of stakeholders at all levels. So I decided to draw up a proposal and present it to the depatment sector staff (the medical technicians, nurses, and the Psychologist), and the equivalent of the “Chief of Medicine”, as a project that we could work on together to strengthen GAAC groups, the system surrounding its function within the hospital and community, and perhaps influence the adherence rate of TARV patients in a positive way. My thought was to put together a small team (a nurse, a technician, a community activist known as an “Activista”, the psychologist, and myself as the health volunteer) to visit groups and offer suggestions on how group members can better support each other in terms of their physical, mental and emotional health.
I started this process in November, beginning with a conversation with my Peace Corps supervisor to be sure that I was moving forward in a culturally “humble” manner. I then had all of the conversations mentioned above to be sure that it is was actually a priority, and a “gap” in services available to the community, and a process that would/could sustain after my departure in 2019. We even decided to use the Program Development and Management Seminar (PDM) offered through Peace Corps, which I attended with my counterpart (a young Moçambican woman who is a technician in the same Psycho-social support department), to further develop the idea and begin to think through planning and implementation. Upon returning from the seminar, I had begun to work on locating the registration forms of group members from hospital files (which is often a nightmare in health centers and hospitals here around the country), so that we could begin to contact group members to arrange visits. It was the first time I had started to feel useful here – in some way.
It didn’t take long after coming back from the seminar with my counterpart, that the hopes for forward progress on the project started to take a turn. One of the doctors started to take more interest in the project, only to assert complete control over the process shortly after – and essentially told me that he and the team in the unit would continue to connect with group members and arrange visits – and that I would be informed of the dates of visits when the time came, so that I could participate in that part of the process. That was at the end of April, and nothing has been arranged or communicated to me since then. At first I was really angry about it, considering all of the time, effort, discussion and planning that had already been invested in it. In addition to that, and more personally, it has been an honest realization that the process had begun to provide me with something tangible – and seemingly useful – to focus my time and effort on during my days with the hospital. And now that was gone.
I’ve continue to go to the hospital, to show up, because it is part of my responsibility here as a Peace Corps volunteer in Moçambique. I also continue to show up – not because of what I believe I might be able to do to be of service for community members in this district, but because somewhere in the future of volunteer placement here, there might be a volunteer whose integral success in working alongside of Moçambican staff at the hospital in service of members of the community – will depend on how I show up and work to sustain a positive relationship with my colleagues here at the hospital during my service. It has been frustrating. It has been disappointing. I am aware, however, that the system that Moçambican staff are working within is complicated and burdened in so any ways, and that contributes to the constant overwhelm that hospital staff feel day to day in the health centers around the country. Financial constraints, resource limitations, increasing numbers of community members needing treatment, and an increasing demand from Funders and donors to “see” where their dollars are going contribute to the challenges that exist in providing critical care for members of the community. Change is not as simple as drawing up a proposal on a piece of paper.
This project was never about me – so to be in control of, or even an active part of the process of making these support visits happen, is not something that I need. If the visits from the hospital begin, and offer GAAC members the support they need, then the service that the community needed was answered by members of the community itself (hospital staff), and can be better sustained that way. I have to be honest and say that I would have liked to have participated in the visits, for many reasons, but mainly because my interest in supporting families and communities has always acknowledged the importance of mental and emotional health at the center of fully functioning and thriving individuals and communities.
Although this project at the hospital didn’t develop as I had hoped, there have been other relationships I’ve been working to build and develop since arriving at site last August, which have slowly developed into actual working relationships where I can offer some of the skills and information I’ve come with to help support my community here. In February, I started to work regularly (once to twice monthly) with the hospital’s youth clinic, which is located in an altogether separate building from the main hospital. The purpose of the youth unit (SAAJ) is to provide a separate space and tailored care and services for adolescents and youth ages 13-24. The head nurse at the SAAJ welcomed my involvement with open arms, and has been a great connection to have here at site as I’ve introduced the unit to a less didactic and more interactive method of education around family planning, HIV and malaria provention, sexual and reproductive rights, nutrition and general physical, mental and emotional health of young people. As is the case with most of the work of volunteers, things often progress forward, and then take steps back before (hopefully) progressing forward again. Just yesterday I received a message from the nurse that from now on I should be in contact with a doctor for any plans for continued activities in the unit. I’ll just have to wait and see how this relationship changes and develops from here forward.
The other connection that is still fragile – as it is still very new – is one started with a primary school about an hour’s walk from my home, and located in the same community as my community based organization, Tsinela. The school Director and the Director of Education (Chefe do Programas) have both welcomed me in to offer health-related activities with the students at the school, and have also opened up potential to work with staff as well in matters related to health. I’ve been able to arrange one meeting so far – just two weeks ago – with a small group of 6 girls who are participating in a group created specifically to focus on health and leadership for girls in our communities. The first meeting was brief, but it was a nice opportunity for us to begin getting to know one another and discuss what we are hoping to do during our time together. I’m also working with the school to identify a Moçambican woman (ideally) who will be my counterpart in this partnership, so that there is potential to increase the capacity of the work with girls in the community, by joining competencies and developing a structure that can and will continue after I leave. I’m still unsure how often we will be gathering – it’s always one step at a time here. This, however,being flexible is paramount and why celebrating each step is critical. I’m hopeful that this relationship and the work we’ve begun will continue.