Early in her life, Safaa lost both her parents and has since lived with her grandma and uncle in an economically strained and marginalised family in Cairo. When she was diagnosed with HIV a couple of years ago Safaa’s life reached a turning point, forcing her to say goodbye to her childhood and embark on a life shaped by isolation and stigmatisation.
One day, Safaa, suffering from severe toothache and in increasing pain, rushed with her uncle to several dentists. They all sympathised, but as soon as her uncle informed them of her HIV status they refused to extract the infected tooth or intervene in any way.
“Desperate, I extracted Safaa’s tooth myself”, said her uncle to a social worker visiting Safaa a few days ago. This is a shocking story, but a real one.
According to UNAIDS, around 500 children are living with HIV in Egypt, with many more hidden by social stigma. Safaa’s toothache story made me wonder: how can the voices of such a marginalised, highly stigmatised and vulnerable section of the population be brought into the light, heard and taken into account by healthcare policy makers? How can this ensure that they get full access to healthcare services without any kind of discrimination?
Meeting the Sustainable Development Goals (SDGs)
With current global discussions around the SDGs, the previous question links directly to SDG 3 “Ensure healthy lives and promote well-being for all at all ages” and its eighth target “Achieve universal health coverage, including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all”
The Center for Development Services (CDS) is currently working on a unique initiative, in collaboration with the UNICEF Egypt Country Office, to understand and address the needs and aspirations of Children and Adolescents living with HIV (+CHAD). The question of how to ensure and sustain the long term access of this marginalized group to decent healthcare services was always a hard one to answer given that the healthcare agenda in Egypt is full of other priorities.
Furthermore, people living with HIV in Egypt suffer a high level of negative social stigma even at the level of healthcare service provision. This stigma and de-prioritisation has deeply hindered equitable access, and quality of services provided, to this group.
As part of the Participate initiative our analysis is that SDG 16 “Promote peaceful and inclusive societies for sustainable development, provide access to justice for all and build effective, accountable and inclusive institutions at all levels” provides an important platform to respond to this issue, specifically its seventh target “Ensure responsive, inclusive, participatory and representative decision-making at all levels”.
Participatory monitoring and accountability
CDS believes that an effective participatory monitoring and accountability (PMA) process would provide opportunities for +CHAD and their caregivers to voice their needs and interests, reduce their suffering, improve the services they receive and help mitigate the health hazards associate with HIV. This process involves nurturing a collective of +CHAD and their caregivers. With the support of an alliance of actors we aim to inform the relevant government bodies and decision-makers of access problems and service quality, ultimately to enhance their accountability for improved services to +CHAD.
Using Digital Storytelling to support change
To support this process we are developing an approach called Collective Digital Storytelling (CDST), which aims to visualise the +CHAD experiences and realities in a manner that is ethical, empowering and collective at the same time. In creating a space and process for +CHAD and their families to express how they experience care, the lived experiences of +CHAD and their caregivers will be located in the heart of advocacy to influence change in health service provision.
The CDST process itself is expected to impact the lives of +CHAD participants, through a creative and novel participatory experience that allows them to express their own realities living with a chronic illness. Importantly, the process will also engage +CHAD caregivers: important actors who influence the lives of this group and the possibilities of positive change.
The relationships between +CHAD and their caregivers form a crucial alliance, which will also be investigated as part of the PMA process. Creating a sense of collectiveness in the storytelling will accordingly steer and shape the advocacy discussion in the context of health care delivery for children living with HIV/AIDS. The children, adolescents and their families will visualise their own experiences through the CDST which is an engaging structured activity.
We are excited about this initiative and eager to share with you our progress in a series of critical reflection blogs. However, we cannot conclude this discussion without highlighting that challenging and shifting discriminatory social norms and stigma is central to this process, as those who are answerable for the access and quality of services provided to +CHAD are themselves sometimes prejudiced against this group.
Hence the question remains, to what extent will this approach be effective? Will the accountability mechanisms and drivers be different given the social circumstances? Central to our work therefore is understanding how and why participatory monitoring and accountability approaches that promote the engagement and voice of marginalised youth can find traction in such a complex social and political context.